Hello
25F, 130lbs, 5’10”, no tobacco, MMJ user, hydrocodone and oxyxodone as needed, cyclobenzaprine, protonix
If you read this thank you so much because I’m absolutely desperate and my doctors are tired of me and I think they think I only want pain meds. I don’t, I just want to feel better. I have a huge stash of emergency oxycodone anyway so I barely even need them for that.
On 12/15 I fell down the stairs and hit the lower of my middle back quite hard. 12/19 I had a LEEP done, 01/06 I came down with extreme urinary issues and between then and now have been back 6 times, seen 4 specialists and have seen my PCP at least ten times for urine samples. I’ve also only been able to attend my full time job for 43 days so far this year and have no more money for copays and if it weren’t for my ADA paperwork, I’d have been fired a long time ago
Over the last two weeks, it’s been taking me up to two hours to produce urine while having a full (and very sore - mostly left side) bladder. This is infuriating. When I do end up finally feeling the need to release, I have less than 3 minutes to get to a restroom before my vision starts going spotty from the bladder pressure pain.
My urologist ordered a cystoscopy, but has been blaming my 3mm kidney stone until I begged for an ultrasound last month of my bladder. Found bladder wall thickening and bladder cyst / possible urachal remnant.
I found out what Cuada equina is today. I learned that it is very very commonly missed. I can barely walk, and at the music festival I went to over the weekend I had to use ADA for just about everything. I look completely normal so I got judged pretty hard, but I do have paperwork. I have been losing weight without much diet change and my back has been killing me as well. I feel so weak. My urine flow is so small compared to what it used to be. I had a period of time where the pain was so bad, I couldn’t feel my clitoris or labia at all so sex was pointless as well, and I thought I’d lose my relationship and be alone forever. They send me to an OB-Oncologist who said not to come back, which is why my urologist finally agreed to check my bladder.
Is it possible that all my issues are related to the cyst and thickening, or could this be cuada equina that was missed on multiple CT’s? I can’t find info on bladder cysts. using retention. When is the appropriate time to go to the hospital? I can barely walk without pain meds. I urinated about 40 times on Saturday, with my usual being 10-20 times, and some days there’s very little pain or urgency at all, but the retention is almost always there to some extent.
It almost feels like the part of my brain that controls my bladder doesn’t work anymore because no matter how hard I tell my bladder to release, it just doesn’t happen sometimes and I can’t get comfortable after that. I’ve slept a total of 4 hours since Saturday morning and I only have one hydrocodone left. Pyridium does NOTHING except for when burning pain presents, and I can’t take NSAIDS until my GI clears me due to extreme gas, constipation and bloating / belching thought to be caused by peptic ulcers. I can’t walk at this point without pain meds, but the ER always releases me with the same DX of cyst and bladder wall thickening and tells me they have no clue what that means. But I’m in so much pain I feel like there has to be something they can do other than give me fluids and monitor me for an hour or two until I can get to my cystoscopy next week.
If you have any advice for me I really appreciate it. I don’t want to die but I feel the only way out of lifelong urinary pain after 6 months now is suicide. The only time suicide doesn’t cross my mind a couple times is when I do end up having to take a pain pill. In March, I had to take oxy every day. I only take them now when I can’t walk because the effects are too strong for me to keep my life in order while taking them every day. But this weekend I have had the most trouble walking, and using the restroom, since all of these issues began.
I can’t afford any more specialists visits after my procedure, so I really wish the ER could do something for me as they’re the only ones who won’t turn me away for not having money at this point. My GI doc actually canceled my appointment because I don’t have $20 and I’ve been putting off another ultrasound because it’s $200 up front. IDK what to do but I’m pretty sure this is how a lot of people end up on fent and heroin - if I had been denied pain meds this far I would have turned to the streets, and that’s coming from someone who has chosen - on their own - to quit most drug related and extracurricular activities to better their life at a young age and is much happier for it.
I can’t even get the ER to catheterize me when I can’t urinate for 6+ hours at a time. What gives? Why won’t they run a different imaging test? They wouldn’t even give me a breath test for h pylori recently and now I’m waiting a month for an appointment I can’t even afford.
TL;DR extreme bladder pain, nobody understands why, extreme difficulty urinating, ER can’t do anything for me and awaiting surgery. Is there anything I can say or do to get proper medical attention or can the ER really not touch your bladder like they say? Is there a way I can convince them to admit me so I could see a urologist before my procedure? My urologist is unavailable until my follow-up and I don’t think the company they work for allows them to Rx narcotics and I’m against taking more than 1 oxycodone a week at this point but so far have been unsuccessful in getting something weaker like hydro or tramadol.

DAY: MAY 7 2024
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Proof read, edited, and formatted to hopefully be easy for The Trip Keeper to read on YouTube.
A lil about me: I have a family history of schizophrenia with two people in my family being diagnosed. I think that's why psychedelics hit me like a train. I know I'm one of the folks they say shouldn't tripping but I've already done it and I am not stopping anytime soon. I'm quite the spiritual hippie type. I live for the esoteric, bizarre, and werid side of tripping. I'm also quite experienced with psychedelics and drugs in general having tried alcohol, cigarettes, vapes, kava, Kratom, weed, oxycodone, hydrocodone, percocet, Hospital Morphine, Adderall, Ritalin, Vyvanse, Conserta, Nitrous, Acid, Shrooms, n-BOMEs, Synthetic shrooms, random Acid non n-BOME RCs, Hydroxyzine (only snorted while drunk), Phenibut, Promethazine w/o codeine, blue lotus, and a bunch of random herbs and nootropics.
A little context to story, I had got some liquid Acid dropped on Bottle Caps Candy from a family member we'll call R. R had called me up informing me he had liquid LSD and to bring a chalky candy when I came to pick it up. He dosed the candy in another room when I picked them up. When he brought them back there was a thick layer of liquid struggling to absorb into each hit so we smooshed another piece on top of each one, 3 tabs altogether. He told me each one was an equivalent of 2 to 3 hits of high quality LSD. I also hadn't tripped in 6 months at this point but that's a story for another sub. Though the reason why didn't have much to do with tripping itself nor anything fun like psychosis.
A couple days later I found myself with my bills caught up, a slow night on Doordash so no work, extra money, weed, some cigarettes, and my roommate was out visiting Family. I had showered and ate some Chinese before taking a short nap. When I woke up it was around 9pm, obviously already dark outside. I was in a good mood, had nothing to do, and didn't want to go back to sleep so I slapped an LSD bottle cap on my tongue and went for a walk.
One of the pieces dissolved really quickly, like less than a minute quick, while the other piece took atleast 15 to 20 minutes fully dissolve. I was slightly nervous about tripping the days prior and was even a lil scared before placing it on my tongue; but, that fear was completely annihilated when 5 to 7 minutes in I felt this electric tingle that started in the back of my head go down my spine. I started smiling, feeling super happy, and chilled out when the tingle reached the base of my spine. I thought to myself, "Wow, I can't believe I was scared to trip again, I feel amazing right now!!" I lit a cigarette and enjoyed my walk for awhile until I started coming to the end of a col-de-sac, the street I was on was on a downward slope I think this affected things but the end of the col-de-sac and the houses started stretching super tall and became super thin kind of like a fun house mirror. I was completely mesmerized by it till I was interrupted by this electric beeping that made my skeleton nearly jump out of my skin. I had looked over and saw this gray box with 2 pink lights on it sticking out of the ground and assumed that's where the beeping came from. I then straight sprinted home cause I wasn't sure if it was hallucination or not. I did go back a few days later and couldn't find the box.
After opening my front door the night is hard to remember linearly but I will try my best. I don't have the texts anymore from this night since I got a new phone. Once I got back home, I had to use the bathroom so I went did my business but while washing my hands I looked in the mirror and noticed my pupils are starting to look a lot like bowling balls. It was then, I noticed the reflection of the SpongeBob, Sandy, and Patrick on ketamine meme my roommate printed out and pinned on the wall. Their eyes were dilating more than normal and they were all swaying back and forth. I texted R to tell him I finally tried the acid and it's strong. It's roughly 10:40p.m. by this point, even though it had been 1 hour 40 minutes since dropping it had only felt like 30 or 40 minutes ago at the most. I was about to sit down and do a dab but I got a almost telepathic sense I was about to throw up rather than a physical feeling I was about to. After throwing up I texted R freaking out questioning if it was acid since it's not supposed to make you nauseous. He just told me "too much too fast" "calm down put your phone down and be safe". I didn't put my phone down.
I started finally doing some dabs after 2 or 3 big rips I looked over and saw 2 shadow people. One was a little girl with blonde hair, a yellow sun dress, no face, instead was an empty void. It was as if her head was an empty shell and her face was the hole. The other one was a middle aged man with short blackish gray balding hair dressed in overalls, no shirt, work boots, also no face. The second shadow person looked a lot like one of my deceased uncles. They didn't feel menacing or demonic nor even holy as one would expect an encounter of this type. I got up and walked to my kitchen probably to get water but I got distracted by a third shadow person who was a woman but I didn't get too good of a look before being distracted by my thoughts. I started stretching and thinking to myself, "well atleast the dark isn't so scary anymore compared to being schizophrenic" at the time it did feel very profound aswell as I am now genuinely less scared of the dark. There's also cardboard cut outs of the Elysian Full Haze and Full Contact IPA cans hung up in my kitchen. People were walking in and out of the giant head on the Full Haze poster, I thought they were sacrificing themselves to the massive head. Thought the dude on the Full Contact poster was holding my brain aswell.
I remember it was around this time the body load and vasoconstriction was getting so intense that my arms and legs felt lankier than normal and my jaw felt like it was wired shut. I drank some water and brought a glass back to my room. When I came back the ocean thunderstorm tapestry above bed had the clouds and ocean actually moving with the lightning striking. I have string lights behind that tapestry that wrap around to the conjoining wall. The string lights looked like technicolor rainbow stars forming beautiful constellations. Normally, they are only blue, yellow, green, red and twinkle but during the trip some were changing colors to pink, purple, violet, orange, and more colors that don't exist. While the tapestry was animated, it had no sound. There's a framed painting of a deer in a forest during the sunrise on the same wall. The light in the painting was actually coming through the painting as if it was a window with sunlight shining through. The deer even had his head down grazing when normally he has his head turned towards the viewer of the painting. I layed down and decided to throw on some music. I couldn't decide on a song, I hit skip on Spotify at least 30 times before settling on Pink Floyd's Comfortably Numb, cliche I know, but they're one of my favorite bands and usually seem to find me when things start getting intense on psychedelics. I couldn't actually read anymore so I only knew it was Comfortably Numb by the hook and album art.
As I layed in bed I started stretching out and looking around the room. I finally started to relax a lil and calm down from thinking these were possibly nBOMes. I started to really lose myself in the trip. The slight movement of my air mattress made feel like I was floating on the ocean sea, which gave way to a euphoric sense of oneness and that I am an ocean of pure consciousness. The string lights above my bed were twinkling and reflecting slightly off the ceiling. The reflections were blending with the moving geometry on the ceiling. Next, I looked up at my Pokémon 20th anniversary poster. It was a bunch of black and white silhouettes of starter Pokémon from the first five or six gens with the ones in the middle being colored and shaped like Pikachu's head. Every silhouette was pulsating and almost bubbling.
At one point, I watched this abstract splatter colored tapestry for what felt like two hours, in reality it was probably only 30 or 40 minutes at the most. There were rotating hexagonal and octagonal pillars shooting out of the tapestry between the pillars it appeared to boil, the bursting bubbles had sparks flying off of them.
I can't remember exactly when this happened in the night so might as well stick it here. While hanging out in my bedroom, I got up to do what else but smoke more dabs. I did multiple in a row where I would do the whole ritual and forgot I had done so and follow it up with another. While sitting there, I light a cigarette to pass time and to just smoke more while conserving a lil on the wax. On my second or third cigarette in a row I started thinking to myself out loud that, "Ya know, Family Guy is right!! Vaping does look pretty fucking goofy. My twin flame out there probably thinks vaping looks goofy as fuck!! And smoking might look cool to some bitches but they give you cancer and shorten your life. It's less money for weed and psychedelics. I think after tonight I'm done smoking forever." I chain smoked a few cigarettes.
I think this is when I started hearing voices in my head. I was hearing random YouTubers, friends, celebrities, family members, and other random voices saying random words over over again. I truly thought I was hearing my sleeping neighbors' thoughts. I genuinely believed I had Telepathy. The only words I could make out vividly; however, was The Trip Keeper saying, "Gassid" over over like it was a soundbyte looping. At the time I took this as a sign to do Nitrous with Acid and that there was something spiritual I needed to see/experience from it. I was right, however this wasn't the night I did that combo as I had no nitrous at the time and it's an equally crazy experience but shorter story. I'm planning on posting that experience soon, also DO NOT huff nitrous it actually KILLS your brain cells.
Thoroughly freaking out again about hearing voices. I start frantically texting R, however I can't remember what for though. I even vividly remember asking R what would happen if I took more phrasing it "will things get more colorful or last longer?" He never responded. Since I couldn't read I was using speech to text to text R. I also had got up to pace through the house. Ordinarly, I would've left to go on another walk but I had convinced myself if that I had left again one of my cats would get out of the house and somehow I'd get arrested. I look up from my phone to notice a swirling florescent neon colored vortex of geomtry in the middle of my living room. The vortex started swirling towards me and started to suck the words out of my mouth. I saw the phrase ,"The only words that make sense are the ones I say out loud" get sucked out of my mouth by the vortex in bubble letters that distorted and mixed with geometry. As the bubble letters got closer to center of the vortex they would distort super cartoonishly, individual patterns and a mix of colors appeared over each letter. The vortex itself had a wigwag shape to it. At the time I thought in my head, "Damn this is what Jerry Garcia probably ment by "Steal your face right off your head"". I actually attempted to draw this out later on. See the drawing here if I can get imgur to work. I don't really remember turning the lights on all through my house but I vividly remember all the lights being off when the vortex stole my words. I don't remember how the vortex incident ended just that next all I know is all the lights are on suddenly and I'm walking out of my bedroom. It's probably 3 or 4am at this point cause I started hearing my neighbor cough and going in and out for cigarettes the rest of the night. I had laid my recliner, the voices had stopped but that was replaced with an intense loud buzzing inside of my head. I had my head on one of armrests, legs hanging off the other armrest, chair reclined, facing the wall. I was watching the logo on my clawhammer wall flag drip like white blood. My cats, of which I had 10 at the time, 5 being kittens still nursing, were running back and forth and playing with each other. Below the wall flag is a table with a wooden CD tower, my cats Cinderella and Oreo had jumped on the table at the same time. Completely in sync and as one fluid motion they stood up, turned to look at me, arched their backs, and sat down. Their coats were flowing and Cinderella had extra golden stripes in her fur. They stared deep into my eyes for a long time and were trying to ask me telepathically if I was doing okay. I more or less alternated between laying on the floor and my recliner for the next couple hours.
Every now and then I'd hear my neighbor out front coughing. I was debating whether or not to go talk him and wait for the sun to come up. Normally, I would've put on a show from myself at various points through the night but I had no internet at the time.
As the sun was starting to really come up and I was starting to really come down, I went outside and talked with my neighbor for awhile. Told him about my night, he's actually a little bit of a hippie too. I walked to the gas station to get some food. I felt like a zombie the whole way there and back. The light made my eyes sizzle like bacon on the Texas pavement in the middle of July. It felt like my brain was a steaming bowl of scrambled eggs. My jaw felt like I got my shit rocked by Mike Tyson. I came home, ate my powdered donuts despite only being able to taste it's texture which was low-key wigging me out, and watched either Space Ghost Coast to Coast or The Trip Keeper on my phone till I passed out.
The next morning (afternoon), my dad picked me up and we hung the whole day while I recovered and slowly returned to feeling human again. I bummed a cigarette off my dad and decided while smoking it that it was my last cigarette. I actually quit all nicotine for a month and half after this night. I started back up purely because of a bad (tested real) Acid/Nitrous Trip.
I do wanna add while not using nicotine I had vivid dreams about smoking cigarettes and vaping. Keep posted for the follow up stories about my bad Acid/Nitrous Trip, Smoking Dreams, and Snorting Hydroxyzine with Alcohol cause I bet The Trip Keeper wants to hear that last one.

Over the last ~3 years our area has been having an issue with a known pill mill provider, we will call Mr. Frank. Mr. Frank is a Nurse Practitioner (with a degree from the online for-profit university) who has a felony conviction for 3rd degree assault that was plead down from child abuse charge in which he nearly killed his four month old daughter. Here's a lovely excerpt the judge wrote in his subsequent divorce proceedings:
See the [REDACTED] Complaint, which provides that the treating physician’s medical assessment concluded that the reported fall did not account for severity of the child’s injury, which resulted in a subdural hematoma and cerebral edema which required the child to undergo a craniotomy.
Since his conviction, no reasonable employer will hire him- as a result he was forced to start his own practice where he began charging $400 cash for oxycodone prescriptions, for which I still have a picture of from his website before he changed it. Mr. Frank began to try and bully us in Feb 2022 after my manager and I refused to fill a prescription of oxycodone 15mg for one of his "patients". He called back and asked to speak to another manager, and then faxed us some bogus liability workup that he clearly has sent to other pharmacies before us. I began to do research and learned all of the above, as well as his surescripts eprescribing had sent prescriptions for promethazine syrup (no codeine) and sildeanfil (viagra) for fictitious patients. About this same time, surescripts sent out an email stating they inactivated his SPI to investigate suspicious or fraudulent activity. (He would later state that he requested this himself as his account was hacked). I partially believe this, but it was probably done by his employee or a patient as I'm pretty sure all Electronically prescribed controlled substances (ECPS) software suites require 2 factor authentication. I talked to other pharmacists in the area and concluded that we all felt the same way that this operation was suspicious at the least, and most likely illegal. We found other reasons based on old opiate prescribing guidelines from 2018 to refuse to dispense (based on him giving everyone more than 50mMeq daily). Those guidelines were revamped shortly after I was sued in 2022 and that particular part is no longer relevant. Another nearby pharmacist also stated Mr. Frank was having a personal bodyguard pick up prescriptions for his 'patients'. I also discovered that a person who had a prior conviction for obtaining a controlled substance by fraud or deceit and attempted to pass a fake prescription for a different provider two years earlier at our pharmacy was getting oxycodone from him- (fun fact, he was confronted about this 'patient' and still is seeing them).
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In March 2022 he sent another prescription for oxycodone for a different patient that we refused to dispense for the same reasons as before. On about March 9 or 10, he called to bully us into filling it, and I confronted him that I didn't feel comfortable dispensing oxycodone for a cash only clinic. He started saying I was making false accusations about his practice. Getting upset about being repeatedly called a liar, I told him we knew that he was a pill mill, and that he is a felon, and asked if he informed the board of that as is required. He responded with "yes I've been through this with them; I've reported dozens of pharmacists like you to the board of pharmacy-" "...well I reported you to the DEA, the Board of Nursing, and the local police department, hopefully it goes better for you than it did for this other pill mill provider or your child abuse charges". He responded with "Don't you ever fucking talk about me or my kid[s] again". I said "Did you just threaten me? I think we're done here" and hung up. I immediately notified my pharmacy manager (who was on the same page as I was) and my pharmacy supervisor. I was as transparent as possible with the whole series of events. He filed corporate complaints against me with [FORMER EMPLOYER] and with the board of pharmacy. When he requested a call back from the supervisor, Chris (pharmacist supervisor) stated he was threatening to sue us for defamation, but to not worry about it and just let my manager handle him in the future. By this point my manager and I had to speak with a BOP investigator, who said they were more than familiar with Mr. Frank and other pharmacists were dealing with similar issues. I had communicated with an assistant general counsel for [FORMER EMPLOYER] about my statement for the board of pharmacy, and the events as I recalled them (late March/ early April). at 6pm on Thursday, April 14th, 2022 my wife was served a summons and complaint at our home that I was being sued by Mr. Frank for defamation and tortious interference. I notified my supervisor immediately, and faxed the summons and complaint to the company's assistant general counsel as I was subsequently instructed. I told them I had intended to use the company counsel to tender my defense and that they would reach out to me. In a text message exchange with my brother, who is a patent attorney, he suggested I not use the company's counsel because they would throw me under the bus if it was convenient for them. I did not listen. On Tuesday, after my shift had ended I was walked back to the store director's office, sat in front of an HR supervisor I've never met, the director, Chris. They asked what I said to Mr. Frank was accurate from the complaint i submitted to the board of nursing. I said it was, then I was told "we have to part ways, at least for now..." and terminated. TWO BUSINESS DAYS after I was served.
The summons and complaint were full of incredible inaccuracies, grammatical errors, spelling errors, and lies. Plaintiff stated he was not a felon, and that I was defaming him by telling other pharmacists that he was. IT IS CLEARLY EVIDENT FROM THE PUBLICLY AVAILABLE DATABASES HE PLEAD GUILTY TO A FELONY CHARGE. I found a private attorney who specializes in litigation who is well qualified and trust to the tune of $350/hr, which is actually a good rate for his level of experience and below average rate in this market. I applied for unemployment and went on a job hunting spree. I ended up 6 weeks later signing with [Big Chain Pharmacy] for a large signing bonus to fill my 'Warchest' after not being able to find any offers outside of retail pharmacy. My unemployment was contested by [FORMER EMPLOYER], and later declined by a judge when I appealed it. The store director argued he was the only one with the power to terminate me and he was uninformed of my conversation with Mr. Frank. Had I been better prepared, I believe I would have won as I believe his claim to be a flagrant lie: any time someone makes a corporate complaint it goes straight to the store director's email inbox.
Back at my new job, I spoke with other pharmacists in the company and relayed my experience and many were familiar with Mr. Frank. Apparently he went into a store to harass pharmacy staff for refusing to fill his prescriptions. After coordinating with a few others, we submitted a request to have a narcotic prescriber block against him within the company. After 2 weeks, we were notified that he would no longer be able to have controlled substance prescriptions dispensed by our company. A 60 day grace period would be given and mail would be sent to him and his 'patients' so they could make other arrangements. In the fall, I was interviewed over zoom with the state AG office with respect to my complaint, and after being in contact with a few local DEA Drug Diversion Task Force agents. The DEA agents stated their supervisor has a mantra of not taking action against providers/professionals until after their respective board hands down disciplinary action. A little later, I was notified the Board of Pharmacy complaint filed against me was dismissed.
I went through discovery and was deposed and after a little over a year, they withdrew their case with prejudice. The reason: plaintiff says I was defaming him by saying he was going over 50mMeq daily for all his patients. We said we would need patient information to confirm or deny that, and would need a protective order, to which his attorney agreed. Plaintiff refused to provide that information, citing HIPAA. We went to the judge and got an order to compel, which the judge agreed with. The deadline passed, and they did not provide the information (likely knowing it would immediately get handed over to the state AG's office). We went back to the judge who stated if they did not comply the court would look upon motions for sanctions and attorney's fees favorably. They continued to not comply, to which his attorney only said "i know, I'm sorry". They withdrew the case with prejudice before we were able to depose him. However, we were able to subpoena the county records in which he pleaded guilty to a felony and the board of pharmacy complaints he filed against other pharmacists and pharmacies (there were 15 in all by this time, some of which predated my involvement).
After this, I had to deal with getting my now $75,000 in legal fees back from [FORMER EMPLOYER]. Their attorneys were giddy that [FORMER EMPLOYER] was going to send their general counsel on a plane to be present for mediation. Because of this, my brother spent $2500 on a round trip flight to be present at mediation, because "this is what I'm good at". The Sunday before mediation we learned that general counsel wouldn't be there. In fact, nobody would other than their lawyers, and they had one of their attorneys who then had him available by phone. For some backstory, their VP of legal affairs and general counsel was THE FORMER CEO'S SON, who was given that position that usually requires a decade plus of experience at the age of like 32... My brother was pissed, he couldn't comp his ticket because he was co-counsel strictly to be in the fold and have privileged conversations. On top of that, they only offered 10k initially, and wouldn't agree to more than 15k after 5 hours. My brother said "this is insane, and I can't even go talk or yell at the guy because he isn't here". After 5 months of dealing with them and the mediator essentially telling them they were assured to lose, they agreed to settle for what was about 73% of my legal costs (about 25 days before our scheduled trial block would begin). There is no gag or confidentiality agreement in place, only mutual releases. Since then, nothing has happened to Frank with respect to the state AG's office, or the justice department. However, I did hear recently from a friend that [OTHER BIG CHAIN PHARMACY] is now refusing to dispense controlled substances for him. My former employer (sans my old store) continues to fill oxycodone for him, and I have been told the supervisor essentially tells pharmacists not to start trouble with him.
January 2024 update, Since then Frank's felony conviction has been reduced to a misdemeanor after completing a probationary period as a part of his initial plea deal. I recently learned that [FORMER EMPLOYER] now refuses to fill his oxycodone scripts after I settled with them.
I just wanted to let everyone know, never trust your employer. Public or Private, big or small, they won't hesitate to throw you under the bus if you become an inconvenience. Even if you have a decade of dedicated work, through the pandemic, on site covid testing, vaccine clinics that start at 3am, covering a last minute illness, personally delivering medications to notoriously unsafe neighborhoods in the dead of night, even being one of the few pharmacist trained to do nasopharyngeal swabs, and do so outside in -20F weather. They will discard you. And if you stand up for yourself, go public, or become a whistleblower, you'll become unhirable. This is why nobody does the right thing anymore.

I’m a 43 year old male living in San Francisco and was diagnosed back in high school with mitral valve prolapse (which they discovered via a really faint heart murmur). At the time, it was decided to wait and see and eventually the murmur went away. As I changed doctors over the years, no one seemed concerned.
Over the past few years, I’ve been noticing that my tiredness has increased and I was getting increasingly winded walking upstairs but attributed that to getting older (and to recently diagnosed sleep apnea). During my physical back in August, my primary care physician was listening to my heart and said “woah”. He gave me his stethoscope and let me listen and sure enough, there was a significant murmur that sounded like “thump, squish, thump” surely indicating that my prolapse had re-emerged with a vengeance.
After a few tests (including an EKG, Echocardiogram, and a Transesophageal echocardiogram), I was confirmed to have myxomatous degeneration (FED) with severe mitral regurgitation with anteriorly directed eccentric jet. Essentially, because my mitral valve was enlarged, blood was shooting back up in the wrong chamber of my heart instead of into my body causing it to have to work harder.
I met with my cardiologist and he explained that it wasn’t emergent meaning I wouldn’t have to get it addressed immediately but that I would need to eventually and the younger I am, the faster I’ll rebound. I decided to wait a couple months to get past the holidays while we did some more tests to confirm if my valve and repairable and get on the surgeon’s schedule.
Finding a surgeon
My cardiac doctor referred me to the chief of cardiac surgery for Kaiser in San Francisco and we had a consultation with him. He was super nice and informative but explained that he only did a method with a full sternotomy (meaning, they crack open your breastplate and go in from the top). I had done some research and knew there were alternative approaches that were minimally invasive and had to ask if that was something he supported. He said no but he has a colleague that does that and if I’d like to consult with him, he’s happy to help set that up. He talked through what he saw as the advantages to his method and downplayed the differences between the “normal” method and the minimally invasive method but ultimately, I was leaning towards a minimally invasive. This was a big lesson to me – you really need to do your own research (which isn’t easy!) to at least understand your options. Doctors will almost always defer to what they feel most comfortable with because that’s how they are trained (which totally makes sense if you think about it – you want someone who trains on fixing what you specifically have the more experience they have in it, the higher chance of success). I think overall though, I was a bit disappointed that they pigeon holed me into a method without at least explaining the options.
After my consultation with the second surgeon, it felt right on all levels and he not only specialized in mitral valve repairs (which is what I needed), he also could do either method and felt equally comfortable with both. He said that many doctors do around 10 of these a year and he does 2 a week which, while maybe not 100% accurate, sounded great. I found that it’s really hard to get good solid information on hospitals and doctors with respect to how they rank in specific surgeries but was able to at least gain minimal confidence that Kaiser here in the Bay Area had a solid program.
So I went through a couple extra tests to confirm I was a good candidate for the minimally invasive port approach to repair my mitral valve (essentially a couple of scans). Everything was set for my surgery in early Feb.
As we were leading up to my surgery, I found my level of anxiety increasing. First, there was a question of getting things set up at work to cover my absence. I have a somewhat stressful job (probably because I mostly make it that) but was trying to balance taking enough time off to recover but also not be gone for too long. I came to the conclusion that without knowing what recovery would look like, I would take a recommended 12 weeks off (my company has a generous medical leave policy) so it was nice to know that I would have a long runway to recover.
Second, there was the unknown of what recovery would look like. What would it feel like when I woke up? How much pain would I be in? How long would that last? Etc. There weren’t a ton of resources that provided the level of detail I was interested in to feel like I could have an idea of what recovery would look like and that was a bit scary for me.
Oddly, I wasn’t super anxious with the surgery itself. I felt pretty comfortable with my surgeon and knew that I just had to trust that they knew what they were doing. It was more of the unknown following surgery that gave me pause. Of course, you have moments where you think about things going wrong and not waking up after being put out but those were minimal in my overall emotional process. As the surgery date got closer, evenings is where my anxiety peaked but as the day approached, I was just ready to get to the other side.
Day of Surgery:
My call time for surgery was at 5am. After going through some quick things during the admitting process, my husband and I went up to the cardiac surgery floor and waited to get check in. Once there, a nurse set me up with an IV catheter (which would get heavy use over the next week) and asked me to change in to my scrubs. They took a full inventory of the belongings I brought with me but on advice of others, I didn’t much of anything except my clothes and my phone. Luckily, I lived locally and would have visitors pretty regularly so if I needed anything, they could bring it. They did advise me to bring my CPAP machine which I did (but in practice, I ended up not using it because most nights I slept a bit elevated which helped; well, that and the drugs).
After I changed into scrubs, they put in in a bed with a warm blanket and wheeled me to a pre-op room. One of the nurses asked me if I had any questions while another shaved all my body hair around the surgical sites. Note, if you are a guy, I’d recommend trimming your arm hair down because you’ll get a lot of blood draws and IV so when they pull off the tape, it can be a bit painful and they didn’t shave my arms because that wasn’t near an actual surgical site).
Then the surgeon came over and asked how I was doing. He also asked if that he can’t repair my valve and needed to replace it, what I wanted to replace it with (a biological or mechanical valve). I wasn’t expecting to make that decision there and felt like I had to make a snap decision but in our original consult, I had asked about what happens if they can’t repair and they talked through the options. For me, they said that a biological valve would calcify quickly and because I was young, it would almost certainly mean that I’d need to get the surgery again within 5-10 years whereas a mechanical valve would last me a really long time. So in my head, I knew a mechanical valve was the right choice for me and I confirmed that with the surgeon when he asked me that morning. But! I encourage you to understand all the permutations of what can happen and the pros and cons of each. Talk to your surgeon beforehand to get comfortable with the possible outcomes so you aren’t making decisions right before going into surgery.
They made me say goodbye to my husband and wheeled me into the OR which was quite the site (it was my first surgery). They transferred me to the table and my anesthesiologist was there and started making small talk with me. I remember two sentences before I was out.
I would later learn the surgery went pretty quickly by most standards – I was out around 7:30 and everything was done by 10:30ish and the surgeon called my family around 11:15 which is when I was transferred up to the ICU.
My next memory was a few doctors over me telling me it was time to wake up. My brain was sort of with it but it didn’t feel connected to my body. As I was coming out of my anesthesia, I remember my mouth being really dry and feeling the breathing tube. They were trying to get me to breathe on my own and they would do so by turning down the oxygen in my breathing tube. I’m semi conscious at best and recall the machines alerting when I wouldn’t be breathing and they would all tell me to breathe and I’d start breathing again. I think they had to turn up the oxygen once in that process so it took two attempts to get me breathing again.
I remember my mouth being so dry and uncomfortable and the machine alerts would always snap me back to reality. By 3:30, my tube was able to come out. When they were ready to take it out, I remember them saying to cough which, after heart surgery, is no easy feat. I can’t say it was painful when they pulled it out but it was definitely uncomfortable and it felt like there were a lot of stuff attached to the tube. I was able to give the meakest cough but they eventually got it all out on one long pull.
From there I was gaining more and more consciousness and was aware of my surroundings a bit more although I couldn’t really talk or do much with my body other than point or give a thumbs up.
As I regained more consciousness, I was able to see what all I had coming out of me. I had two lines – one on the right side of my neck and another on my lower left side of my neck. I also had a small tube coming out of my right peck and a larger chest tube coming out of my right peck that would be with me for a while and was meant to drain fluid in my chest. I had about a 3 inch scar under my right peck (which is where the port was that they did the surgery) and in my groin which is where they put me on bypass. I also had a catheter to help drain my bladder.
They tried to get me out of the ICU as quickly as possible but all in all I was there for about 24 hours so I spent the night. It was nice because you essentially have a dedicated nurse who constantly helping to manage your pain (although you are still a bit out of it). I had a challenge with being nauseous as I was coming off the anesthesia and with the pain meds so even though they pumped me full of anti nausea medicine, it was a constant balance of managing either my pain or my nausea. Because of the nausea, they wouldn’t really give me water because they didn’t want anything in my system to throw up but they would occasionally give me ice chips which were godsends. I did end up throwing up a little bit at one point but it was very minimal. I think my body knew it would be painful to have anything substantive come up so it was a little spit up. But I always kept the tub close.
Before they could move to the regular ward, they removed the smaller tube in my breast (which wasn’t painful because they ablated the nerves in my surgical site – which I recommend as it apparently helps minimize a lot of the pain). I think they also removed the lines in my neck (but those could have been removed before I woke up – I can’t recall).
They also make you sit up into a chair and then also go for a walk before they move you. It felt like a herculean mental effort to transfer to a chair but when I did it, with the assistance for the nurses, it was easier than I thought. The walk was a bit tougher for me. I was able to walk ok but I started to tremor and shake uncontrollably (like I was cold; but I wasn’t cold). I’d come to learn those are called “pain tremors” or “pain shivers”. I wasn’t actually in that much pain but they said that your body is in so much stress that it doesn’t know how to react. It got so uncontrollable they had to lay me back down and give me more pain meds. It also has to do with my body purging the remaining the anesthesia and sounded like the pain meds were interacting with that.
Despite that, they were ready to move me to my own room on the hospital floor and there was an aggressive nurse who couldn’t get me out of the ICU fast enough.
Regular recovery.
24 hours after arriving in the ICU, I was being transported by wheelchair to my normal hospital room where I would spend the next few days. Overall, I expected to be in the hospital 4-7 days hoping that my relative youth would put me on the early end of that.
Once I arrived in my regular room, it was a pretty standard routine of being woken up at 6:30am, getting my blood drawn for labs, and a nurse coming in every 4 hours to check my vitals to give me medication. They would tell me what medications they were giving me but honestly, there were so many that it was hard to keep track. There were checks on my pain and if I ever said I was in pain, they were pretty open with pain meds (Oxycodone and Tylenol) but they weren’t always volunteering the Oxy which I think is a good thing. You need to be honest and proactive about telling them your pain level but also be mindful that you’ll eventually need to wean off of them (and by eventually I mean after you leave the hospital).
Sitting in the hospital room is sort of miserable (to no one’s surprise). I was able to get to the bathroom on my own (and it certainly got easier each day). I almost always had pee in a container so they could measure my output. I had a really tough time peeing early on and they were going to put the catheter back into my bladder but I definitely didn’t want that so I made sure I peed and once I got through the initial hurdle, it got a little better.
The first time I tried to walk, I got the same pain tremors again so I had to cut my walk short but after that, it settled and I was able to walk fairly regularly. They told me walking is the most important thing I could have done and I was surprised the nurses didn’t force it more but given I had visitors to help me and I was tired of sitting in the room, I tried to walk around the floor 2-3 times per day.
Each day someone from the surgical team would pop in and ask how I was doing. One of the bigger pains (literally and metaphorically) is that they keep your chest tube in for quite a while to help drain fluid in your lungs. The nurses measure every few hours and it’s the last thing (aside from your IV) that they pull out of you. It’s pretty uncomfortable and leads to a dull pain in your chest and shoulder. The pain meds help but it makes it difficult to get truly comfortable. In addition, you have a plastic box with tubes that you have to carry around anywhere you go while it's in. I believe they took it out on Friday for me so it’s with you for a couple days (to ensure the drainage is winding down).
One thing I wasn’t aware of is that they were going to put me on blood thinners for three months following the surgery. Because I was getting a repair vs. a replacement, I didn’t think I’d need blood thinners (you’re on them permanently with a replacement as I understand). Blood thinners are high maintenance – you have to watch what you eat and drink and they require multiple blood samples to make sure you stabilize in the right range of “thinness”. Luckily, my hospital covers traveling nurses to visit you at home to check for you but that’ll happen at least twice a week for a few weeks until you settle. But all things considered, I can manage that .
Overall, I was in the hospital for 5 full days, including my surgery. I went in on a Tuesday and was able to go home on Sunday which I was told is pretty quick. There was a possibility that I would have been able to go home on Saturday but they were putting me on blood thinners and my levels weren’t right so they wanted to get that closer to normal. When I was able to go home was a complete mystery to me and everyone I asked would give a different (or non) answer. I’d learn that the on call doctor helps make that decision so when they come around once a day, ask them questions on the criteria for going home as they are best suited to help you know).
Home
About 1 week out from the surgery I was home about 4 days and overall I’d say my recovery was going pretty well. It was hardest early on but each day gets better as your body stabilizes. I hadn’t had any issues with walking (I was able to take a 30 min / 1.3 mile walk my second day home) but I definitely have to take a slower pace and have some breaks.
You get sent home with some pain meds to help manage but not quite as powerful as what you had in the hospital . I’ve found that most of my pain is in my breast area near the surgical sites. It’s certainly manageable but feels both tight and pinchy at the same time. As I mentioned, they ablated my nerves around the site which I think substantially helps minimize pain there but you can certainly feel the pain underneath the numbness and the mobility in my right arm is much more limited and I’m much more sensitive to it.
Sleeping was challenging at first but I made sure to have a healthy dose of pain meds before bed so I could sleep easier and that’s helped a lot.
I’m about a month out from surgery as of this week and I’d still say it’s going well. One of the frustrating parts of the process is that they don’t really give you any granularity as to what your recovery will look like (and anything they give you seems geared towards a full sternotomy and not a minimally invasive approach). Of course recovery is different for everyone but it would have been helpful to get a sense of the average recovery.
I’m pretty mobile and able to go where I want and walk decent amounts of time. I found that the pain was pretty manageable during the day but at night, it would escalate. I took some sort of pain meds before I went to bed to make sure I didn’t have flare ups at night but I’ve mostly stopped those within the past week. The biggest annoyance I have (and it can get significant) is a fairly intense burning sensation I have around my shoulder, back, and arm. It’s not constant but it flares up after a lot of movement (or a day of moving) and it’s like having really bad sunburn under your skin which makes it hard to concentrate or do a whole lot. I think it’s caused by my nerves growing back (the sensitivity is where I have feeling on one side and numbness on the other). My visiting nurse also tends to think I have some muscle inflammation. I know that the nerves take 4 months to a year to grow back so I’m hoping the burning doesn’t last that long but we shall see.
Now that I’m far enough out, I feel like I’m able to start living my life pretty normally (except going back to work – I probably could go back to work if I really needed to but that would be pushing it). I can’t say that I feel an differently after the surgery. I’m guessing that’s best left to a time when I’m fully, fully recovered (back at work, etc.). I am still a bit winded walking up stairs though.
It’s really strange to process everything that happened to me. Oddly, I get flashes of guilt that pop up, almost akin to survivor’s guilt which is really weird (and somewhat baffling) but thankfully they are fleeting. The doctor said that going on bypass messes up your endocrine system so you get all sorts of feelings and emotions. I can’t say I’ve experienced the crying and depression that others said are common (although depression and I are old friends) so that’s been good. There’s a large part of me that wants to go back to doing everything normally but I know I still have to take it easy – I’m learning that I’m not great and allowing myself to fully heal.
I hope this helps a little to demystify the process for some folks.

I've read this Sub for awhile leading up to my surgery and wanted to share my experience. I've had diverticulitis flareups for about 18 months. They wouldn't stop for anything so we decided to go the laparoscopic route.
Day 1, January 12th - Its hard. The previous day you have to prep and that’s difficult. We got to the hospital at 5:15am just to literally "hurry up and wait." We checked in and a nurse brought us to check vitals then left. 15 minutes later I was called to the back and left my family. That was the last I saw of them until recovery. In the back they'll have you disrobe and put a robe on. They'll place the IV. I waited here literally for almost two hours. I spoke with the surgeon, anesthesiologist, head nurse and so forth. They'll all ask you the same questions to make sure the team is on the right page. Finally at 7:45 I was rolled into the surgical room. Everyone is busy so there aren't much pleasantries so I just laid there waiting then next thing I know I woke up and my mom was staring at me. The nurse next to me asked me if I was in pain and I just said yes. I really wasn't but for just having surgery, the more pain meds the better. I know he called for Fentanyl and that basically that put me in and out of consciousness.
I'm not quite sure how long I was their but in a few hours they decided to take me to where I would stay. It was the first time I tried to get out of bed as they wanted to take me in a wheelchair. Let me tell you, I didn't have incision pain or internal pain, the pain came from the core muscles. Your core muscles will be so incredibly sore, you will be surprised. I also found that I had multiple tubes coming out of me. I had an IV for fluids. I had a catheter and I had a JP Drain.
For me, during the first day, moving was incredibly difficult and painful. I couldn't even pull myself up on the bed. My core muscles almost just didn’t want to work. The nurses were very helpful and kind. Use them for help; don’t be afraid to page them. You are injured and need help and that is what they are there for. You will be asked to walk a lot and I recommend you do. I did one simple lap the day of the surgery. It went slow and I had a big man making sure I didn't fall.
Food - The first few days, all I did was drink apple juice. I didn't have an appetite in the slightest. On day three they moved me to solid food. The only thing I ate was half of a turkey sandwich, which was only sliced bread, turkey and mayo. I felt extremely full after that. I kept with the apple juice then after about 5 hours I had a small omelet with cheese. Again I couldn’t really put down that much food but I snacked where I could. One thing to note was the solid food gave me a lot of gas.
Bathroom - It took multiple attempts to get anything going. I don't think I was successful until late into the second day. I finally went to the bathroom in just the slightest amount but was able to get a lot of the gas out of me. You will have incredibly loud and long farts. It will be embarrassing but lord have mercy you will literally know what a balloon feels like deflating. The bowel movements were very much just like sand and I did not have any blood. I never urinated since I had the catheter in for fours days. I don't know if it was the nerve block or it was just put in well but I hardly felt it and between not going #2 and having the catheter, it saved me from having to get in and out of bed. They will want to pull the catheter as soon as possible due to a risk of a UTI but I held firm. As of writing this, two weeks later, today was my most successful bowel movement. It does feel like everything is getting back to normal but it takes time.
Pain - Outside of the core muscles there wasn't an overwhelming amount of pain for me. I was very uncomfortable from the amount of gas in me. They use a lot of gas during the procedure and some gets trapped. I didn't have any shoulder pain like I read about but the abdominal gas pain was very uncomfortable. I had one 3" incision and four 1/2" incisions. I was given a nerve block. I was given oxycodone every 6 hours and Dilaudid every two hours. For me, the oxycodone was too strong so I mostly went with Tylenol and Dilaudid. To be honest, when I just laid there watching a show, I was in next to no pain - even after the nerve block wore off. Pain was associated with the core muscles and trying to get in and out of bed. On day 4, I was sent home with some oxycodone tablets and I think I only took 3 of them. By release, you should almost just be on Tylenol or Ibuprofen.
Staples - I ended up with 11 staples. Seven in the long incision and 4 in the random cuts for the DaVinci machine. For those who wonder about the pain of removal - Oh my god I was so nervous getting the staples removed but in all honesty when they are pulled, it felt like a pinch at worse. Some of the ones removed, I didn't even feel. Don't worry so much about this, the anxiety is much worse than the actual removal. It feel like you are being tapped with a needle.
Hospital Discharge – The surgeon had four criteria I had to pass to leave. 1. Pass gas. 2. Poop. 3. Eat solid food and 4. Not bloat up from food. On day four I passed all four test and thank god, I wanted to get out of there. My last day I had the catheter removed. Ouch. I also had the JP Drain removed. Very Ouch. They’re fast but intense. As of today the incisions are scabbed over and still healing. They itch! Let me emphasize something, when you are driven home… ask literally the most defensive driver in your family. Go slow and disregard everyone on the road around you. Its not a comfortable car ride home and they can pass you.
Recovery - My first week was tough. You can basically only sleep on your back. I stayed in the hospital for four days. I had a shot of Heparin every 8 hours (blood thinner) and that stuff hurts. Its supposed to go in your stomach but given the situation, I had to have them put it in the back of my arm. Through week one, moving up and down is very difficult. Try and use your legs and arms, nurses, family members and so forth. Again, my surprise was that my core muscles were the major source of pain; not interior pain or incisions. The first week of recovery is slow but in the second week, once you really start eating, you’ll turn the corner and healing just takes off. As of today, I am now a little over two weeks removed from having the surgery and feel like I could almost go to work tomorrow. (I won’t but I could)
Bring with You - I HIGHLY recommend you bring a tablet, laptop or something to keep yourself entertained. Bring an eye mask and earplugs to help with sleeping. I also brought noise cancelling ‘over-the-ear’ headphones. You won't sleep well but its helps. I stayed in the hospital for four days and just binge watched shows. Don't worry about toiletries. They have all you need. I brought clothes like hoodies and flannel pants but never used them.
All in all, two weeks removed I feel it was the total right decision for me. First week is tough, no way around that but then the healing takes off and hopefully you’ll be like me and almost normal in no time.
Please feel free to ask me questions.

46 female 5'0 155lbs
Currently taking B12 shots once a week Infusions for vitamins and hydration 4xs a week Clinical trial treatment and shots No other meds at this time by choice
I've posted this 5 times and it keeps getting removed ive listed everything in the post that is asked
I need some medical advice on what way I should go with my cancer treatments. I currently have stage 3B follicular non Hodgkins lymphoma. It was stage 4 when it came back from remission but now it is down to stage 3b. I am on a clinical trial through Sloan Kettering Hospital in NYC. I am in the NYC area also. I am currently out in disability and it has not been easy on my finances with this clinical trial for a 2nd time. The medical advice I'm asking for is plain & simple but not clear cut to me. I need medical advice for help to make a decision with staying on the clinical trial or just ending treatment& going on hospice. The reason I'm coming to reddit is because I'm at my whits end & nobody in my family or friends wants me to stop treatment cause they don't want me to die obviously but they won't listen past me saying I thunk inwant to stop treatment. They flip out & say i need to be strong& fight to live bullshit along with every other bullshit thing people say to cancer patients to make them feel adequate or that they have the good fight in them once again. I think it's come to the end of the road for me though, cause of the situation I've gotten myself into with the fentanyl. I'll explain the fentanyl situation later on. Right now, currently I have tumors in my neck and brain stem and pther parts of my brain that are small now. All the lymph nodes on the left side neck, shoulder and underarms are full of cancer. Plus it has gone to my ribs & fractured plus broken 4 or more of them on the left side. The ribs being painful is an understatement with these ribs & its also in the lymphnodes in my left kidney & left side of my SI joint & now it's also on multiple levels of my spine area. My neuro surgeon says i need surgery asap or it will get worse and effect my walking & even standing up eventually, but all my other Dr's won't approve me to have the surgery at this time due to the cancer being aggressive and reaching the areas it has reached so fast in so little time. It's also has reached a small spot on my liver very recently & now also my femur bones on both side. I just think my body doesn't have it in me to fight this for a 2nd time around. On top of all that I was taken off of pain meds when I went into remission in april for about 8 weeks and had to start getting pain pills off the street to help me with pain that i was having post cancer. The whole time.i thought it was post cancer pain it was really just the cancer coming back but Not one dr would listen to me about my pain or tell me i was addicted to the pain meds from the tome taking them even thou i didnt take them everyday due to not wanting to get addicted to opiate and then they just cutting me off with no help at all on addiction to opiates or explaing what would happen when i ran out of pain medicine in general. They just said to take tylenol or ibprofen and lose more weight if i can. Over a short 8 week the cancer showed up on a CT scan at the er . The Dr's made me think I was in remission for good cause this cancer is rare to come back or become aggressive. So it came back fast and with a vengeance this time. Well, So,im an honest person & felt its best to be honest with all my health care professionals no matter what it is. Well, I was honest and told my oncologist that I was getting pain meds off the street and he said he was going to do a drug test to see what pain medicine i was getting from the street I was told him it was oxycodone 30mg time release but of course inwas wrong. Well it came back on my drug test as fentanyl. Well, of course as soon as he saw fentanyl come back on my drug test his whole attitude changed and he treated me like a junkie not a cancer patient. He refuses to help me in any way until.l im off of the fentanyl well,I'm currently in the withdrawl process to get off of the fentanyl &it's just making everything even more hard of course.im on day 2 of having no fentanyl and the withdrawls are worse than the damn cancer itself. I tried to get on suboxene it didn't nothing for the pain and I didn't last long in that clinic cause they said I needed to go to pain management for pain meds for the cancer. Like duh I know that but I got addicted to the fentanyl and now im stuck. So they didnt want to deal with this anymore they made an appointment at the Methadone clinic for me. The methadone didnt help the cancer pain at all. It just made me nod and still be in pain but i was just sleeping all the time while in constant pain and being sick non.stop with the damn cancer growing rampant in my body. Then, The dr at the methadone clinic sat me down and said i need to be on pain meds for the cancer & if im on methadone no dr is even gonna look at me for pain medicine cause if im on methadone. He said I really need to be in pain management or my oncologist needs to write a script for pain meds. I explained the situation he didnt believe me and he called my oncologist who told him the same exact thing I said smh. So the methadone clinic dr said the best option he could suggest is to try and kick the fentanyl cold turkey. Thats what im doing now. Im on day 2 of no fentanyl at all. Everyone I know in the medical field is shocked I'm going thru this and said to get another opinion which i have and they just agree that I can't be given pain meds while being addicted to fentanyl no duh thats insane to even thunknof on a common sense level. Nothing helps with the cancer pain at this point im just suffering from the cancer pain and the pther symptoms from havung cancer loke nauseous, fever nonnstop from the lymph nodes being full.of cancer, and the non stop dizziness and now seizures that have happend a few tomes from it being in my brain stem. Im a walking case of problems from cancer andngetting no help cause of the damn fentanyl being in my system. But not one dr i see will help me get help to get off the fentanyl by putting me in a medical induced coma to get past the physical withdrawal process or even help me get into an ibogaine treatment in canada cause of the cancer stopping any idea of doing the ibogaine treatment in canada. Im sure theybwont even look at my situation cause of the damn cancer. It's a never ending battle between the cancer and the damn fentanyl being in my system for the drug tests now it's on my medical record. It's a never ending battle trying to get the help I need for both the cancer and the withdrawal process to be easier than cold turkey. But i said fuck it and i am im doing it cold turkey and its hell so far im on only day 2 but im trying to stay strong and get past this withdrawal process and have some meds to help but theybarent really doing shit for me. Yes I know its very stupid of me to even start buying pills from a trusted person I know and stupid to believe him that it was oxycodone cause i should of known it wasnt the same feeling as oxycodone.I agree that I need to be off fentanyl to get treated with pain meds. Well, Honestly, once im off this fentanyl for good after withdrawaling after going cold turkey. Should I even get any pain meds prescribed to me for a never ending circle of being addicted to opiates for the rest of my life and made to feel or look like a junkie at every dr visit or hospital stay? Do all drs look at their patient as junkies if they are in my situation? My situation is rare but it clearly happening and i have no help or resources to help me with this rare ass situation im in now. Shit let's be honest I ask myself if I am I a junkie now? Ive never been addicted to anything in my life so this is all new to me on this road with fuckin cancer here also. Some of my medical professional friends and or family of mine keep saying to get a lawyer& Sue the Dr's of mine because I am not being treated fairly due to the fentanyl addiction and having cancer. I keep telling all of them I got addicted to fentanyl then the cancer came back.IMO The Dr's are doing their best that they can woth this rare situation that I created with this fentanyl and it needs to end for once and for all. i definitely am done with the fentanyl but course if im going to be looked as junkie with cancer for the rest of my life while in treatment what do i do to not look like a junkie to all drs for the rest of my life if i beat cancer or not! Part of me wants to throw in the towel and be done and the other wants to fight until I have no more fight in me. Right now I don't feel I have left fight left and I'm so desperate im.putting my situation on reddit to hopefully get advice. I talked to one of my visiting nurses about this situation im in and told me if i stop my treatments and go on hospice they will be in charge of pain medicine & will give me any pain medicine with no problem cause i stopped treatment and now choose death. Like WTF im afraid of one thing only and that is death or dying. Why would she even say that to me even if i asled her advice. It is probably cause im addicted to fentanyl and she views me as a jinkie now too. Life ending is scary for me cause of the unknown after death. I know its part of life but it scares the hell out of me but I'm at a point where I'm ready to accept death if thats the path meant to go down at this time. I feel the clinical trial just wants my case for their advantage in curing cancers cause it worked on me the 1st time around & of course my money to pay for the clinical trial to be given to me. So, me asking them for advice on what to do is pointless and absurd because I'm the star project patient in the clinical trial that the clinical trial has worked on the 1st time that I beat this cancer. I have asked them and they just say the same think to stay positive and fight this battle again. While Im lost& confused and feeling neglected at the moment by everyone around me whether its medically, professionally and or loved ones so i turned to reddit for some help or guidance from a medical professional viewpoint. Also in America we do not have euthanasia laws, so i cant end my life on my own terms in America but i also feel that 20% chance is low percent to beat this cancer a 2nd time around with this clinical trial. Last time it was 80% thats a big difference in percentages. In reality It might not even work again for me. Like I said I have asked all the clinical trial Dr's and they say to have faith but in my opinion I'm a guinea pig for their clinical trial and my money is helping them fund their clinical trial to fet approved by the FDA. My oncologist told me it's my decision and if I stop treatment he will have to refer me to 100% hospice care. My primary didnt even really answer when I asked him his advice. He said it's out of his professional scope of medicine and to ask my oncologist smh. All the other Dr's I see tell me to do my own research and ask lots of question to help me make my mind up on my course of action. That is just a nice way of saying we don't want to be bothered with your decision that you have to make. Maybe coming to reddit isn't smart or logical but im currently held with my back against the wall in a situation I can't deal with from any area especially while i am on wothdrawl from that damn fentanyl. I'm just looking for a medical professional advice from how I'm being treated by all my Dr's? Am I wrong for thinking I'm being treated like a Junkie with cancer? Is it possible to go thru withdrawal get on pain medicine again and to be able to get off it again if I beat caner for a 2nd time? Is 20% a low percentage to beat this cancer again? If it is low that would you tell you patient in my situation? Or what would you tell a loved one? Will I always be labeled as a junkie because of the fentanyl being on my chart? What would you do in my situation atop treatment all together or continue to have fight and fight this battle with that alim 20% chance of it actually putting the cancer in remission a 2nd time? I understand completely if you don't want to offer advice on this rare situation but what does it hurt to try and get advise from medical professionals on reddit who have no ties to my medical Dr's or medical journey..please if you have any questions I can answer anything. I have access to all.my medical charts with all the areas I'm currently being treated for. I do go for a PET scan next week cause of a suspicious area seen on 2 other places. Thats why I feel that clinical trial has stopped working everytime I go to get tealsting done more spots of cancer show up in different places all over my body. Once they told me the pain in my side was fractured and broken ribs from the cancer is when I started to give up on everything. Plus my mental health is stranded on a highway somewhere waiting for a ride back to me. Thank you for reading this long ass post. I tried to fit everything in as best as I can.

Hello all! Got my (25F) gallbladder removed today. I’m making this post in the hopes of being able to help people like me who may have questions and don’t know where to ask them/Googled endlessly but couldn’t find info and may have massive anxiety about their surgery. This was my first surgery ever besides getting my wisdom teeth out. I will be making periodic updates about recovery since I’m a little over 24 hours out of surgery!
I have Polycystic Ovarian Syndrome (PCOS), anxiety, depression, and got a liver biopsy during my surgery. I also have suspicions I’m on the autism spectrum. I am plus size (290 lbs, size 3X). I’m located in Ohio, USA. My surgery was a laparoscopic cholecystectomy using the DaVinci 11. I would also say I have a fairly high pain tolerance and deal well with pain meds.
EVERY PERSON’S GENETICS AND EXPERIENCE ARE DIFFERENT, I AM JUST SHARING MY STORY AND EXPERIENCE. I know the UK tends to have people go on a specific diet before gallbladder removal to shrink their liver for easier removal; I was not out on such diet.
🚨TMI warning 🚨
TL;DR: it really wasn’t as bad as I thought it would be and the pain is definitely an interesting feeling.
My surgery was scheduled back in October. I was told to arrive at 7:30 am to have surgery at 9:30 am. I met with the surgeon for what felt like 15 minutes and opted to have surgery. For the first 2 months after that, I felt little other than “eh, it’s in the future and nothing to worry about”. Once December hit, I was a mess. It felt too real, it was a month away, and I was so anxious. I had lots of panic attacks and crying spells during the month. I felt incredibly overwhelmed and underprepared at this point.
I also started my first menstrual cycle in over a year in December, which didn’t help. It lasted for 15 days, had massive hormone dumps and mood swings, an incredibly large amount of blood, and had to call off work for 2 days the week before Christmas. During this time, my anxiety dialed up to 120% and I would be shaking at work because I’d worked myself up over it. Once this ended, my anxiety came down to about 90%, then the final week before surgery it came down to 15-20%.
I didn’t feel much anxiety about the surgery the few days leading up to it, mostly because I think I was just numb. No turning back, trying to tell myself that I was “going in, going to sleep, and then going home”. All I needed to do was show up.
I got a pre-admission call around 1 week before the surgery; the lady on the phone was very nice and just asked questions about allergies I had, medications I was on, go over medical conditions such as the PCOS, confirm info. She started going over information about what to do when I arrived for check-in, where to park, and assigning me the duty of using antimicrobial soap pre-op. She emailed me the information she gave me in the call, such as not wearing jewelry, bringing a bag for things like wallet, glasses, etc., support person instructions such as having them stay with me for 24 hours after the surgery, what clothing to wear, medications/supplements to take before the surgery or to stop them, and not to eat anything after midnight the day before surgery. I last ate at 9:30 pm the night before.
My day of surgery started at 5:30 when I woke up and took my 3rd shower with the antimicrobial soap. I had previously taken them the day before (morning and evening). I’d had some meltdowns for a week about the instructions provided to me for prep since they were not very clear (there was a paper included with the bottle of soap, which said to read the label on the soap. Reading the label, it stated you needed to wash for pre-operative skin cleansing by using a clean towel on the surgical site for 2 minutes, rinse, then dry. Then repeat the process for another 2 minutes. The paper instructions I received stated to only clean once, with no timeframe, and then instructed for me to clean my entire body with a separate towel. It then instructed to dry the surgical site first, then the rest of my body with another clean towel), but still did the washes as per the bottle instructions.
I then got dressed in a hoodie and long pajama pants that reach up over my rib cage, almost under my boobs. This was a great choice— usually my waistband hits at my belly button, which is where the surgeon specified there would be an incision. They were easy to get on post-op, warm enough, and are comfy. I had no probably taking the hoodie on and off. I also wore socks and some slippers that were easy to slip on and off.
I left with my mom to arrive promptly at 7:30, where we were directed to the registration, where they confirmed my name, address, phone number, birthday, and provided my wristband, having me confirm my info on it was correct. She then took us to the check-in desk for outpatient surgery, where we grabbed a pager like the ones at restaurants and sat down to wait.
We waited for maybe 10 minutes before the pager went off and we followed a nurse to the pre-op bay. I sat on the bed, got asked a few questions like my name and birthdate, then the nurse’s assistant asked me to follow her. I got up and she led me to a bathroom since they had to do a pregnancy test. I hadn’t been told this would happen in advance, and had used the bathroom before we left my apartment, so I didn’t have any pee to provide. We walked back to the bay and she took my blood pressure and pulse.
The nurse’s assistant was ok, she was very quiet and didn’t seem to enjoy her job. She left to have me put on the gown, and she got a larger one out of a drawer since the regular one wouldn’t fit me. She asked if my pulse was normally “like that” and I had no idea what she meant by that question.
The gown was soft and tied on the back at the neck and the left side, so my butt wouldn’t hang out. It was hard to tell if it was tied, so I’m sure some strangers accidentally saw the side of my naked leg as I walked through the bays to later use the bathroom (twice).
A nurse came in to help with paperwork and prep and the nurse’s assistant left. She was pretty nice, kept up with conversation and laughed at my jokes a little. She went over consent forms with me. She called someone to come in and start an IV so we could see if I could pee for the pregnancy test. She also kept stating my surgery was scheduled to be at 10:30, which I found odd. It was never made clear if another surgery took longer than expected or there was a bump made in the schedule.
The prep she provided was putting my clothing in a plastic bag, placing the bag under my bed, provided a mouthwash to use to prevent pneumonia since I was being intubated while under (had to swish for a full minute, it burned my mouth a little and was mint flavored. I was grateful for it since I’d forgotten to brush my teeth before leaving my apartment), she placed compression sock type of things on my legs (these were inflated to prevent blood clots during surgery), gave me grippy socks, placed an anti-nausea patch behind my ear (such as ones used by people who go on cruises), stuck a temperature gauge on my forehead and connected it to a wire (this was for continuous monitoring of my temperature throughout surgery. When I was in post-op it was apparently malfunctioning so the nurse with me just took it off. It felt really weird to have on), and then she swabbed betadine in my nostrils for infection prevention. She also provided a blanket to cover me up since I was naked under the gown. I asked her to enter into surgeon’s notes to take a photo of my gallbladder because I wanted one.
The woman who came in to do my IV was also very nice. She placed the IV in the top of my hand after doing a numbing injection (I always wondered if they numbed it or just stuck it in there). She remarked on my temperature, which was at 100.2° F; it was assumed this was because of my PCOS.
They turned up the fluids to run fast so my bladder could generate pee for the pregnancy test, which came around in about an hour. I then had to go again a little after that, so I was disconnected from the temperature gauge and had my IV bag held as I walked to the restroom.
The IV didn’t bother me too much, it pinched here and there when I went to move because my body off the gown (getting up and down kept making it get tucked under my body, which then felt tight and restrictive), but the pinching wasn’t severe. The surgeon came in and later inserted dye into the IV and the nurse anesthetist injected the anesthesia through the IV when I was in the OR.
The nurse who helped with paperwork then washed my abdomen with a wipe for even more infection prevention, wiping for a good minute or so, then letting it dry with my gown open, then letting me pull my gown back down. She left us to sit to wait for the anesthesiologist to come in and speak with me, then fill out the consent forms for me to sign. When she came back, she also went over the timeline of the day (surgery would take about an hour and a half, then I would be in recovery for about the same amount of time while they monitored my vitals, then discharge would take an hour once they decided it was time for me to leave).
The anesthesiologist was extremely brief. He barely said a few sentences. He introduced himself and asked if I had removable teeth, dentures, or anything dental like that, to which I replied I had a chipped tooth a few years ago that got glued back on. He looked at it and took note, then sort of left like he didn’t know where he was going next. Very bizarre.
My surgeon came in with a resident, where they injected the dye they use to check the ducts using “firefly mode” on the DaVinci, which was dark green and went over the procedure a bit. I should have asked at this time for the photo of the gallbladder once it was removed but didn’t. I don’t know at this time if the photo was actually taken. I’ll be very sad if I don’t have it, I was trying to see the little bastard so I could see why I went through all of this mess.
Then a nurse who was going to be in the OR came in along with the nurse anesthetist, who would actually be in the OR putting me under. Both of them were very nice and my favorite people that I met throughout this experience. The anesthetist put some antibiotics in my system to prevent infection. I think she also got some extra strength ibuprofen in me. I told her about the chipped/glued tooth when she asked about dentures/removable teeth and she took note.
This was go time, so I handed my glasses and phone to my mom, hugged her goodbye, then got wheeled to the OR. I wasn’t that cold, but I could see the average person being cold. The OR was down a hallway that sort of reminded me of a storage garage but also an aquarium. It had lots of large machines docked on the sides, I assume for OR use, and there was some sort of stairway with metal bars going down a floor. Not sure where that led to. The OR itself was a lot more cluttered than I expected (there were file cabinets and boxes of gloves and stuff, a metal cabinet on wheels that was open and empty, I assume for surgical supplies to be delivered after being sterilized).
They wheeled me next to the OR table, which was a part I was worried about. I wasn’t sure how to get from one bed to the other. They elevated the bed I was on a few inches above the OR table so it was easier to move over. I placed my hands on the table and hoisted my body over, while a nurse grabbed the under side of my gown so it would be easier for them to take off after I was under. The gown was still covering my body (I was nervous they would start undressing me when I was awake). I felt them place a strap across my legs so they wouldn't fall off the table, and the compression socks started to inflate around this time. The nurse had me place my hands at my sides (they pulled it back up for a blood pressure cuff to be placed) and then he pulled out the part of the bed to strap my arm out.
My head/shoulders were on a folded blanket to give the right angle for my head to be intubated, and the had me hold my chin up while placing a mask on my face that was supplying oxygen. It smelled plasticky but wasn’t scary. They warned me they would be pumping anesthesia through it and there might be a metallic smell, but I was out before I was cognizant of anything smelling different.
The next thing I knew, I was waking up in recovery, lying back and feeling groggy. My throat, which I was worried would hurt, felt like it was in the very beginnings of being sore, but it wasn’t too bad. My voice was hoarse as I talked to the nurse next to me, who gave me some ice chips and was tapping away on a computer. My eyes were struggling to stay open for a good couple of minutes, but when I started talking to the nurse a bit, I came to a little quicker. She had to tell me not to wipe my eyes since there was risk of scratching the cornea.
Some guy across the recovery bay was moaning and the lady across from me had a neck brace on, but seemed awake. I asked the nurse how long it had been since the surgery and she said I’d been there since 12:40, so it had been about 45 minutes.
The nurse pushed the back of my bed up so I could sit up and sip some water while taking an oxycodone, but almost immediately after that I asked her to push it back down because it hurt to sit up. I fought back tears. It wasn’t a conscious pain, it just was like, pressure? But it didn’t feel good. They said the oxycodone should kick in in a few minutes; I'm not sure when I started to feel it.
Once I was awake for about 5 minutes, they wheeled me to discharge, and I was there for about 10-15 minutes. The nurse there was sort of nice but I didn’t really end up liking her because I felt rushed by her. She gave me water and Jell-o; I sipped the water quite a bit because my mouth was very dry. I had thought I would need some chapstick for my lips, but they weren't dry at all. The nurse left me alone for about 10 minutes, then popped in and asked if my mom was there, which she wasn’t. She then said she’d go get my mom. About 3 minutes (which felt like an eternity) later, my mom popped around the curtain. This was when I burst into tears. My mom blamed it on the anesthesia, but I think it was me just finally allowing myself to feel all of the feelings that had been boiling up until this point.
I’d had the surgery and it was finally over. This damn thing that had overtaken all of my energy and almost every conversation for the last month was finally over.
My mom held my hand and the nurse kept asking me if I wanted to sit up. I kept saying no, because it hurt. Then they asked if I wanted to get dressed, and I kept saying no because I didn’t want to get up and be in pain. They sort of forced me to get up after about the third time of asking, placing a blanket on a recliner chair in the corner of the room and standing me up, sitting me down. Standing up wasn’t great. I could feel the incisions and my liver was sore from the biopsy. I couldn’t stop crying at this point and felt dizzy. I didn’t really want to leave the safety of the hospital. The nurse also said to not wipe my eyes for 24 hours after the surgery but that I could use eyedrops. She took out my IV and wrapped the lower part of my hand in gauze.
My mom said that the surgeon and resident had said the surgery went well and that my liver looked “really good”. I was kind of mad they didn’t give the post-op update when I was in the room since I would’ve liked to hear it myself and ask if they’d gotten the photo I wanted. They also provided her with a packet of post-op instructions that also stated the time the nurse gave me the oxycodone in the post-op bay.
The nurse instructed me to breathe in when standing up and exhale when sitting down, because I tend to hold my breath when in pain and was doing so when they got me off the bed and into the chair. The incisions really weren’t the worst part, but my whole abdomen just felt like it got beat up and I really didn’t like provoking pain by standing up or moving.
They sent my mom to get the car while the nurse helped me into a wheelchair. The nurse assistant who assisted me in pre-op pushed me out to the lobby and out the door to get in the car. My mom drove to get a prescription for hydrocodone acetaminophen, which I was to take every 4 hours. Once we got home, I took one and then got in bed. I slept for about an hour and a half, then got up and came out to sit on the couch with my mom and watch some TV. I stayed like that for several hours, but my shoulder started hurting.
I’d been warned about the shoulder pain from the gas they use when doing laparoscopic surgery— it felt like someone was taking a thin wooden dowel and pressing it into my shoulder. The only relief was when I stood up and walked around (the nurse in the discharge area had said the best way to get the gas out was to lay down with my hips elevated above my shoulders… LIES. It makes it worse, way way worse). I also found better relief using a heating pad.
I ate some yogurt and pretzels as I’d been instructed by the surgeon to eat bland foods for the first 4-5 days after and then work up to solid foods. Post-op instructions provided at the hospital said to start with liquids and then work up to soup and crackers. Post-op instructions provided in October stated that I could resume my normal diet; these instructions also said to follow them over anything provided by the hospital if there was cause for confusion. This confusion among directions caused another meltdown at home. I get very anxious and have been very anxious about my body not being able to handle the foods I love after this whole ordeal.
Fast forward to tonight. I’ve been keeping up with the meds, but the liver biopsy is feeling worse. It hurts to breathe since it’s under my diaphragm, and causes a sore side, like a muscle that’s been pulled by my rib cage. The incisions are starting to feel like they burn a little and are starting to create bruises. I laid down in bed to attempt sleep and the pain in my shoulder, plus the liver pain caused me to go into a panic attack with so much pain that I cried. I was partially hyperventilating, trying to get up out of my bed but worried I might pass out from lack of oxygen.
I’m now sitting on my couch, propped up with pillows, hoping the relief of sleep will overtake me soon. I know tomorrow will be worse. I’ll update later tomorrow.
Day 1 Post-op Update:
If you have made it to reading this far, congratulations! I know some people won't need to read the whole thing and I'm perfectly fine with that, but I won't apologize for leaving in all the details. If someone's anxiety can be alleviated by me making this post, then that's good enough for me! Day 1 post-op has been interesting. Last night was very painful, so my sleep wasn't great. I napped for a few hours while also keeping up with the hydrocodone acetaminophen every 4 hours. My shoulder pain was worse this morning but I have been making a point to not use my shouldetense it, as that makes it worse. I also have learned that sitting with my back unsupported helps to relieve the pain better than laying down or against something.
My incisions are starting to feel tight, but they have them covered in gauze and some tape that is supposed to come off 3-4 days post-op. They're starting to show signs of bruising. The incisions really aren't too bad, but the liver biopsy pain is still sore. Not as bad as yesterday; I can breathe well without too much issue. I can definitely feel that I'm swollen and slightly bloated. I also took the gauze off where my IV had been inserted, which has a slight bruise and bled a little, but nothing severe. I have taken my temperature and don't seem to show any signs of fever.
I've had small bowel movements since I haven't been eating much, but my moms says this is a good sign. We purchased milk of magnesia to use in the case I did have some constipation since I'm receiving opioids to reduce pain, but this has not been the case so far. I ate an apple with peanut butter today and plan to try some chicken noodle soup tonight. My stomach has been very gurgly while it tries to figure out how to function without the gallbladder. I've had some gas, but not a lot.
The plan is to take my first post-op shower tomorrow (I can take a shower today but I think I'll be too sore to really commit to it and I'm still not very well rested). Hopefully I will start to eat more solid food and gain a little bit of appetite back, but we'll see. Will update tomorrow!
Day 2 post-op update:
Pain is much better today, the shoulder barely hurts and my liver biopsy feels about 2/3 better than it did initially. I haven’t had to use the heating pad at all today, nor walked much. I’ve been making a point of squatting rather than bending over for anything since the surgeon had said no bending, but didn’t specify a timeframe. There were also no post-op instructions regarding bending.
I took my first post-op shower, which felt very good. I took care to be gentle around the incisions, which are covered with tape so as to be waterproof. I finally got the betadine staining off so it doesn’t look like I had a terribly applied self tan. My bruising is showing up now from the incision points, it’s a little yellow but nothing terrible.
I only ate some yogurt and pretzels this morning due to feeling a little nauseous but have sat down with a bowl of chicken noodle soup for dinner. My stomach has been rumbling all day.
I had a larger bowel movement this morning, not feeling any issues there other than some slight pelvic floor pain and not wanting to strain so as to pop the incisions, but the BMs aren’t very hard to push out. I suspect I won’t need to end up using the milk of magnesia we bought, but never hurts to have it on hand.
Still keeping up with hydrocodone acetaminophen which is helping to dull the harsher pain (now at a 2-3 at a given moment). Will update tomorrow!
Day 3 post-op update:
I slept on my bed last night, propped up a little by pillows, which was a very nice change of pace from sitting upright on the couch. I slept for about 7 hours and woke up feeling okay. My shoulder hurts a little today and the incisions definitely feel tight/burn when I stand because they’re being pulled. Nothing too bad, though. There’s little to no liver pain. I had a large bowel movement when I woke up, which isn’t out of the ordinary for me pre-op.
I ate a sandwich last night with rotisserie chicken, 2 pieces of bread, and a teaspoon of Miracle Whip for flavor. My mom suggested to test trying the Miracle Whip before making a sandwich to make sure it didn’t make me feel nauseous. I’m feeling nauseous in the mornings, but it’s hard to tell if this is because of the surgery or my body just being naturally like that (it runs in my family that nausea happens in the morning, making it difficult to eat breakfast. I’d broken this cycle pre-op, but maybe we somehow hit a reset button).
My plan for today is to maybe take a small 10 minute walk on the treadmill, just to get that out of the way, rest, and try to eat a little more. I’ve been neglecting eating a little because I just have little appetite and I don’t want to experience the infamous “dumping” that people have talked about, but so far nothing like that has happened.
My mom left yesterday so last night was the first night on my own; I felt hesitance trying to go to bed because I didn’t want to experience possible pain like the first night without someone there to help me up if needed. Luckily nothing happened. I’ll keep updating this post probably until my 2 week post-op appt, just to document the entire journey.
Day 4 post-op update:
Feeling okay today. I ended up eating some more chicken noodle soup, a piece of bread with peanut butter and honey, and water yesterday. Still having bowel movements with no issue and took 2 hydrocodone acetaminophen; one in the morning and one before bed. The pain is manageable, but in that phase of “it’s not a good idea to go back to work but I don’t feel so bad that I can’t doing anything” even though I’m dozing off from the lack of quality sleep and can’t really do much for too long before feeling tired. Kind of getting to the point of being bored to tears.
I was able to sleep in my bed again in a slightly more typical position (on my side) and experienced little issue. Incision sites feel slightly tight but nothing terrible. Liver biopsy is still a little sore/feels like a pulled muscle a little but tolerable.
The hospital called this morning to check up on me post-op, but of course I missed the call since I couldn’t reach my phone in time. Woke me up too early. They left a voicemail saying this would be the last time they called (they called yesterday and I missed that one too) and if I had any questions to call back. I’m slightly annoyed that they cut off my sleep and don’t even have to get some sort of answer from me but alright.
I did also get the official lab results back to review in the patient portal for my healthcare network, so I was furiously googling what all of it meant. No cancer in either the gallbladder or liver (never thought there was but good to have confirmation). They confirmed the gallstones in the gallbladder and non-alcoholic fatty liver disease (NAFLD) in the liver, along with some fibrosis (which is liver scarring— untreated/long term it can turn into cirrhosis, but the lab did not show any current signs of cirrhosis). From what I’m finding (and of course will have to wait for interpretation of results from my doctor) it looks like this is confirming the NAFLD and showing I have stage 1/4 fibrosis, which I would say is probably good since it’s been caught early.
Today was the day to take off the gauze and TegaDerm patches, which wasn’t painful like I’d thought it would be. It was very odd unearthing the actual incisions (they still have sterile tape on them), since they were placed a little differently than I’d thought. They did actually put one inside of my belly button! There was little blood on the gauze (all dried) and only the gauze in my belly button showed any sign of discharge (slightly yellow, dry). I will continue to update tomorrow!
For anyone still following this, I will be posting daily photos I’ve been taking at the end of the healing process to show what things looked like on my body. This will be probably on 1/23, since that’s when my follow-up appointment is.
Day 5 post-op update:
Liver biopsy is bothering me a little bit but not bad. I took a shower and was careful around the SteriStrips on the incisions but nothing too worrisome in terms of pain. They feel bruised and are visibly showing bruises so some heaviness is expected. Yesterday I had some trouble eating because everything made me feel nauseous, but I was able to eat an apple, some chicken noodle soup, and rolls.
I was very blue yesterday for my mood. Not sure if it’s because of the lack of sleep (got woken up early by a post-op follow-up call I ended up missing because I was asleep when it first started ringing), meds (didn’t take any pain meds yesterday, today I have only taken regular acetaminophen/Tylenol), or something else. It has been very boring and lonely during recovery despite a few calls with my dad. I was able to do a load of dishes in the dishwasher yesterday, so that was good to feel a little productive.
Today I feel a little tired, and my appetite still isn’t where I’d like it to be. Today should be the last day of bland diet mode, so I’m going to try some bacon and eggs for lunch (my mom suggested the bacon (she has a medical background)). I can bend with almost no pain (sometimes I need to kick my leg out so as not to stretch the skin where the incisions are. Still bruised but feeling like I’m healing.
Day 6 post-op update:
My incision sites are still bruised and don’t hurt too much. I’m able to bend more and really don’t have many issues there. I ate a decent meal last night with little to no issue (ate pot roast meal from Bob Evans) and ate a good breakfast today (3 eggs, 1.5 pieces bacon, cinnamon roll).
My bowel movements today are of normal color and more solid than they have been the past few days, so that’s promising.
I had a lot of liver pain last night, more than I’ve had for this process, so I took regular acetaminophen before bed and took some today when I woke up. I’ve been taking it easy and dozed for about 2 hours after I woke up since sleep hasn’t been the best quality. I’m making it a goal to drink more water today.
Day 7 post-op update:
Took a shower today and have been bending more. I still am experiencing liver pain but incision pain is minimal. The SteriStrips are still attached to my skin, the one in my belly button seems to have come off in one spot but not all the way.
Took 2 doses of acetaminophen (morning and night) and went out to dinner with my mom. Still learning to accept I don’t need to be on the bland diet anymore and trying to venture out with foods to make sure I can figure out what does or doesn’t work. I had a Philly cheesesteak, diet soda, and some fries for dinner and didn’t have really any issues. My appetite is returning a bit and I’ve been drinking more water. Pre-op I was drinking ~80oz a day, but now I’ve been getting less than 40.
The liver pain almost feels like it’s stuck under my rib cage, it’s really weird. If I take a moderate or deep breath it twinges and really hurts. I messaged my doctor to see if they have any suggestions, my mom suggested taking another hydrocodone acetaminophen to see if that might relax something that would help with it feeling better, but I’m hesitant to do so.
I slept on the opposite side (on my left) last night in hopes that that would lessen the liver pain but today it was arguably worse than yesterday. I hope this goes away in a few days, I am so not looking forward to this being a problem when I go back to work.
Bowel movements are still very bile-y, which I suppose is semi-expected since I’m still healing and only a few days into eating legitimate food. Yesterday I had one movement where it was practically liquid, but I think that might’ve been associated with my metformin that I’m on for the PCOS. Here and there I’ll need to go urgently, but I can’t figure out if it’s connected to something specific, or it’s just part of the healing process.
Day 8 post-op update:
I haven’t felt much liver pain today (1/10) since I slept on my back last night and have been laying on my back the majority of the day when I was sitting. It seems leaning to the side is the issue; I’m not sure how long that’ll take to not be a problem. Hopefully not long.
Had a few good bowel movements today, one was sort of liquidy but they weren’t bad. I had eggs, bacon, and a cinnamon roll for brunch, then for dinner had an apple and lemon pepper chicken. I also had a bowl of Reese’s Puffs to sort of test my lactose tolerance (still got it, woo).
It feels like I might be getting a UTI, but I’m not sure. I’ve drunk at least 60 oz of water today and counting, so I’m hoping it’s just me being paranoid. No idea if that’s related to the surgery, but wanted to detail what I can.
The SteriStrips in my belly button are the only ones that seem to be falling off (they’ve partially detached but aren’t fully off)— the post-op instructions said they would fall off in 7-10 days post-op so I assume they’ll be off tomorrow when I take a shower. I’ve been able to bend for the most part; I sat down on the floor to scoop litter and when I reached to the back of the box (I was sitting about 8 inches away from the opening) it felt tight on the part of my stomach in between the belly button and groin, but it wasn’t bad (that’s where I have bruising so I’m not really concerned).
I didn’t take any meds today and drove for the first time since surgery. It was just to pick up a prescription, but it was completely normal. Fresh air felt good.
Day 9 post-op update:
I was able to sleep on my left side last night (and right side when I slept in) without it resulting in severe liver pain. I only had a little bit of the pain I’ve had the past few days but it wasn’t constant and was only happening when I was leaning too much on my right side. I also started to wear my pants normally (I was wearing it lowered under my stomach so as not to rub on the incisions/SteriStrips).
I drove to the store and walked around a little to make some purchases (got an at home test for UTIs and it confirmed I have one, so getting something done about that tomorrow). I felt some slight pain in my left abdomen, but I have no idea what caused that other than walking around. It felt nice to get some fresh air.
The incision directly left of my belly button was burning a little bit, but I think that was because of me standing/walking and it’s in a spot where it might be stretching when I stand. There was also a sort of subtle “ripping” feeling in between that incision and my belly button, but I have no idea what was really causing that.
My post-op instructions say the SteriStrips are supposed to come off on their own 7-10 days post-op but they very much do not seem like they’ll come off tomorrow. I don’t know if I’m supposed to pull them off or just wait until they fall off. I’ll probably wait. I’m also not sure if the sutures they used dissolve or if I need them removed at my post-op appointment. Guess I’ll find out eventually. So few instructions/details…
I showered today, cooked food, sat in my office and did some work on the computer. It’ll be here before I know it, but I need time to get to the 2 week post-op mark so I can lift my trash out of my apartment and to the dumpster lol. I doubt it’s 20 lbs but I don’t wanna pick it up to weigh it if it is/risk it.
Bowel movements are still hit or miss on if they’re semi-normal or bile-y/liquidy, but I know digestion can take up to 6 months to adjust after surgery.
Day 10 post-op update:
Today went well. I experienced little to no liver pain (only very mild pain about 3 different times today, pain not lasting more than 5 minutes). I walked around the store for some Valentine’s Day candy I’m not supposed to be spending money on, got tested for the UTI, and picked up a prescription to treat the UTI with.
I walked 30 minutes on the treadmill which resulted in a little flare up of pain in the liver area but it felt more like I was running out of breath rather than liver pain and was gone very quickly.
As I guessed, the SteriStrips have not fallen off today, so I’m not sure when they will/if they will anytime soon. Incision pain was localized to the incisions directly to the sides of my belly button but it was about 1/10 on the pain scale and just felt like the incisions were being stretched a little as I was standing/walking.
I drank much more water today than I have been and today felt relatively normal, which was relieving since I feel like all of last week was a rollercoaster. However, I did not eat anything until 5:30 pm (I know, it’s absolutely terrible. I woke up at 10 am), so that’s a little hard to deal with since I was just occupied with errands and talking to friends.
Bowel movements were still very loose and bile-y today, but it’s not bad, especially since I didn’t eat much. I had a semi-normal movement as my first movement today, but I think that’s because I couldn’t get to the restroom as quickly as I’d have liked (I scheduled the UTI testing for my first pee of the day to get optimal results since it’s the most “pure” but didn’t want to have a movement in the same sitting. Blame my anxiety).
Day 11 post-op update:
Today was okay; it was my first day back from work since the surgery, and also my birthday. I didn’t have any liver pain and there was only a little bit of incision pain in my belly button, I think from just stretching. The pain was probably 0.5/10.
The real healing now is just with my routine and my mental health. I’ve been very depressed and am trying to process this surgery and the events of the surgery. Still thinking about the photo I asked for, since my doctor did not message back and confirm if some sort of photo was taken.
I feel like I just need it to help process this experience, and without it, I just don’t know what I would do. I wanted to see the reason why I went through this ordeal (not like it was such a big, bad experience), and if they didn’t respect my request/wish I would feel really mad and betrayed.
The SteriStrips still have not fallen off; I took a shower this morning. My bowel movements were still a little on the diarrhea side, but nothing terrible at all. I was able to drink more water today, and because my work day is better structured, I actually ate 3 meals for the first time since pre-surgery. That’s mostly because of my depression and trying to regulate my sleep schedule.
Day 12 post-op update:
I’m very glad I stayed home today just because of the mental stuff I’m going through with the whole recovery process. I was able to sleep normally last night so that was great. The SteriStrips have still not come off the incisions, but I did notice I have a rash, similar to diaper rash, in my belly button. I get these under my stomach here and there due to trapped moisture, but washed it as best as I could and then put some Desitin on it per my mom.
The other incisions look fine. I’ve been experiencing the pelvic pain again so I have a doctor’s appointment scheduled for Friday with my primary care to get that checked out, since results said I don’t have a UTI. I have a slight burning when I pee sometimes, but it’s not constantly an issue. I don’t know if I’m just dehydrated or what.
I went out with my mom and got Texas Roadhouse for dinner, with no ill side effects digestively. I had ribs, a Caesar salad, fries, and a Diet Coke (not the healthiest meal, but it’s eating out). We also shared a brownie since my birthday was yesterday.
Day 13 post-op update:
Today was very rough. I’m getting overwhelmed with life and have been feeling very depressed. I can’t tell if this is post-anesthesia-, hormone-, life-, or all-of-the-above-related. I’ll be asking my primary care tomorrow about some possible anxiety meds, which have been a long time coming.
The SteriStrip finally fell off of my belly button incision and it blew me into a full panic attack and meltdown. The incision in my belly button is like bunched up and just bothers me. My belly button used to be smooth and kind of flat and now there’s this like divot. I know it isn’t fully healed, but it’s hard to imagine this going even sort of back to the way it was.
I feel violated. I was told when I met with the surgeon back in October that the incision would be above my belly button, and when I woke up it was inside the belly button. I didn’t think this would impact me this much, but it feels like this decision was made for me and I had no say in the matter. All I did was say “yes I want surgery to remove the gallbladder” and then wasn’t privy to really kind of anything else happening.
My mind won’t stop going over all the stuff leading up to and after the surgery; I wasn’t told any post-op information, it was all given to my mom without me in the room, I wasn’t given the information about the incision in my belly button, it just was like that when I left the hospital, I wasn’t given details I needed beforehand or the photo I asked for… why!? It feels like I should have a right to this information.
I have a therapy appointment tomorrow that I scheduled today because I’m losing it. I feel so stupid for feeling so heavily and so dramatically about something that’s such a non-issue and that other people don’t seemingly have a problem with. I feel nauseous.

44 male, currently has a 6mm disc bulge, and is HIV undetectable. He's taking several medications but doing so as if they are as needed with the exception of biktarv. So biktarv for HIV, tramadol and hydrocodone for his back, Klonopin for reasons that are unclear to me, something that lowers his blood pressure, and I know that he has oxycodone as well, but I don't think he's taking it. At least he didn't for the last 24 hours and he still says he has the same symptoms.
This will last somewhere between a few days and a couple weeks. He basically feels that he's like a complete invalid during this time.
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My boyfriend periodically gets vertigo. At the same time he will get really tired and extremely nauseous. He feels like he's out of breath.
Through googling he has decided that it's a crystal in his inner ear and will try the epleys maneuver to get it to go where it's supposed to be. I don't know if this even can be confirmed through some kind of test but nobody has done any tests to try to confirm it.
This can sometimes make him feel better but it sometimes doesn't. Sometimes he'll take anti-inflammatories, nsaids basically, or he'll use a nebulizer with some kind of steroidal inhalant. And those can inconsistently make him feel better.
He got an MRI of his brain and it was fine. He's had an EKG and an ultrasound on his heart, whatever that's called, and he has a stiffening of the wall of his right ventricle I think and it's causing his systolic blood pressure to rise slowly. I think it's literally called systolic hardening.
He says he has asthma but he's never really been assessed for that. He just has an inhaler that he can get refilled for his whole life. But the initial time it was prescribed was because of a fire near to his house when he was a child.
This is just me talking but it seems to coincide with when there's a lot of turmoil in his life. He does have panic attacks. He doesn't really understand what a panic attack is though so he thinks he doesn't and when he's asked if he has panic attacks he'll say no. But I have panic attacks and I know that he is having them. So when he gets really stressed his breathing gets more shallow and a lot faster. Or it gets way too deep and also fast, and it will be that way even when he's sleeping, when he's stressed. And he doesn't seem to realize that it's happening (even if it's a really obvious like he's panting practically) and he'll even deny that he's breathing this way even as it's happening.
And he'll get manic so he either sleeps irregularly or not at all ( he believes that you can basically bank sleep. So if you don't sleep for say 48 hours, you could just sleep for 16 hours because that's two 8 hours cycles and that's fine and you'll be normal and I keep trying to tell him that's not how it works)
But the point is I think that it's stress. So if it is I need to know what kind of medical professional I have to get him in front of who could confirm that, or say that it's highly likely that it is because he's not going to take my word for it.
And then in the event it's not that what other person should he be put in front of so that they can decide that it's not something else. Because classic panic attack thing, he's convinced he's having heart attacks. I cannot convince him he's not. But I would need to somehow eliminate that possibility, asthma (he claims that he was told he has one of the worst cases in the world and I told him that is highly unlikely but I suppose it could be true because we live in a fire-prone area), and your crystals I think. And then also have a psych professional of some kind of talk to him to be able to get him to believe it's all mental.
And obviously I have my opinion on it already but I could be totally wrong so I'm open to anything.
And the only other thing that I considered was fibromyalgia but he doesn't have any of the symptoms that I would expect and both my sisters and my mom have it so I don't think it's that.

LATEST UPDATE: Week 12 update and golf update 4 (03/17/24)
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Hey there. First off, if you've found yourself in this subreddit, I'm sorry. Sesamoid issues are a sincere pain in the ane and it can be a very drawn out and exhausting injury.
Agenda for this post
- How my sesamoid issues started (fibular)
- Solutions I tried
- Surgery Decision
- The Surgery
- Post-op recovery
- Return to golf
How my sesamoid issues started
One day after a basketball game, I noticed I couldn't move my big toe without a ton of pain. Then it became really hard to even walk and it remained that way for a week. Eventually, I went to the podiatrist. We did some X-rays and the doc came back and told me I fractured one of my sesamoid bones and that because the bone is in an area with not a lot of blood flow, it may take up to 3-6 months to heal, even in a healthy 17-year-old male.
I did the classic boot and wait and it did well. I also did PT and a lot of swimming and water-based exercises to recover which helped a lot. By the time track season came around I was ready to go.
For a couple of years after that, I would get intermittent pain after extreme use, but nothing brutal. I played soccer in college, which, as you can imagine, is a ton of running, cutting, and physicality. Like I said, still had some pain, but didn't prevent me from playing at a high level and very often.
Then afterward I went to law school. In law school, I picked up basketball again and before you know it every time I played a few hours of rec ball, my foot would hurt. The weird part was that the pain would eventually go away after a few days or at worst weeks, and it didn't feel similar in intensity to the fracture I had a few years prior.
Fast forward to 2022 now and I'm 29 playing in a men's league with all ex-D-1 22-25 year old soccer players. As you can imagine, this was a bit of a challenge because they were all still so fit from coming off their playing days so recently. As a washed up 29-year-old does, I went wayyy too hard and stress fractured the foot again. Did the boot and wait, but here's where things got tricky.
After the 2022 break and healing, I thought I might be okay, but honestly even after the podiatrist said the X-rays indicated it was healed, something felt wrong still. This is where golf comes in. After law school, I started focusing on golf as my main sport because it's a sport you can play forever (hopefully) and one that comes with far less risk of injury than say soccer or basketball.
While playing golf this whole season I noticed I was loading the outside of my right foot on my backswing out of habit to protect the sesamoid area. If I was truly healed, that would make no sense. So, I started to try to keep weight on that right foot. Sure enough, the pain started to come back. I started popping like 3-4 Advil per round and gutting through it. This, while clearly stupid, worked for a while until after a workout I noticed a lot of pain again. This time instead of the podiatrist I went to an orthopedic surgeon (more on picking a surgeon later). We did X-rays and an MRI and found out the bone was fractured in half. Since this was the third known break and the second within 14 months, we determined it was best to move forward with a sesamoidectomy, as the bone was likely diseased and incapable of properly healing on its own.
Solutions I tried
After this first fracture, I did icing and a boot for 8-10 weeks, PT, and got custom orthotics. I was very young at this point and just making sure to be diligent with the boot was a major help in getting me back to sports. That said, this of course didn't fully solve the issue.
After the second fracture, we not only did the boot for 8 weeks, but also tried a weekly laser bone stimulation treatment, and new orthotics. Honestly, can't say the laser treatment was worth it, though insurance did end up covering it for me so that does make it easier to swallow. Again, felt moderately better after the boot session, but still, something was off.
Finally, surgery. More on that to come.
Surgery Decision
Surgery was my last resort, but at a certain point, enough is enough. I couldn't keep doing rounds of conservative treatment only to break the bone again a year later, or anytime I tried to push myself during a workout or sport.
I would highly recommend trying conservative treatment at least once before going to surgery, but there does come to a point where the opportunity cost of not getting surgery gets too high. I was at the point where I couldn't do the activities I wanted the way I wanted to solely because of a bone the size of a pea in the ball of my foot. So the analysis is this:

• Do nothing
  • Best Case: I can perform activities reasonably well by walking on the outside of my foot, but I can't push myself or walk/run/swing correctly without extreme pain. However I can do most things in a modified way.
  • Worst Case: I break it again and waste another 8 weeks treating it. It gets worse and worse over time, and combined with my age going up, recovery times on conservative treatment keep getting longer with worse results. I get to the point where I cannot do most things even in a modified way and I have to get surgery or be miserable
• Get Surgery
  • Best Case: I have to battle through recovery, but I am completely healed and performing at a level I haven't experienced in over a decade.
  • Worst Case: Even after going through an arduous recovery, the pain remains to some degree and I get some sort of weird big toe alignment issue which causes difficulties in performing my activities.

The analysis of the above is relatively clear-cut. Both worst-case scenarios are relatively similar (downside is equal) but the upside for surgery is far better than the upside for doing nothing. Once I came to this conclusion, it was an easy decision.
The Surgery
The way I picked my surgeon was through personal connections. A sesamoidectomy is RARE. Yes, it's a relatively common remedy for repeatedly broken or chronically painful sesamoids, but those conditions are super rare. This matters because you need to pick a surgeon who does these types of surgeries often, despite their general infrequency, and knows exactly how to do the surgery while mitigating potential issues. The way I found my doctor, Dr. Daniel Bohl, was through my cousin who went was in residency with him. Great educational background, good residency experience, he has been practicing at Rush for many years, but most importantly, he is a professional sports surgeon. This last note was huge for me because it assures he not only has done this surgery many times before since it's an athlete-dominated issue, but he also treats people with difficult problems that need to recover fast. Time on the field/court is money as an athlete and getting back into shape quickly is imperative at the pro level. You don't make it as a surgeon with that patient clientele without a successful track record.
I was very lucky my cousin knew of the right people, but if you do know someone in the medical profession, ASK THEM FOR RECS. If you don't, make sure you research the doctor's background and make sure they've done this surgery before (preferably many times).
I had the surgery itself yesterday. Pretty classic surgical experience. Got to the surgery center, checked in, and got to my "room". I got hooked up to an IV and then was given a sedation primer. The anesthesiologist asked me some questions, then I got wheeled back to the surgery room. I got some additional heavier sedation and then the next thing I knew I was waking up in my original room telling the nurses to buy Solana (which turns out was great stoned financial advice).
An hour later I was on my way out with some crutches in my hand and a completely numb lower leg. Full time from in the door to discharge was about 4 hours.
Post-OP recovery
Here comes the fun part. I have a deluge of medicine to take 3x per day and I need to be resting my foot in an elevated position for the first few weeks whenever possible. I am going to post a recap of my daily recovery for the first 7 days and then I'll start to widen the gap of updates.

• Day 1 - My leg from my shin down was completely numb, so there was no pain at all. The numbness was a bit annoying in its own way, but it's not so bad. All I did was mess around on my laptop and watch TV. Not a bad way to kick off the holiday szn.
• Day 2 - I slept through the night pretty well and had no pain, but that was purely because my foot was completely numb. Around the 26-hour mark after the initial numbing, my foot started to regain feeling..... and I wish it hadn't. Once the numbness wore off the pain set in. I have a relatively high pain threshold, nothing extreme, but generally takes a lot to put me in real discomfort. I would say this pain is oscillating between a 3/10 and a 7/10 depending on the hour, what I'm doing, and whether I've had the oxycodone I was given recently. Overall, at this point the pain is annoying but bearable, but it's day 2 so sometimes you just have to be realistic about these things (shout out to First Law fans).
• Day 3 - Slept through the night again outside of maybe two waves of pain. The last oxy I took was at the end of day 2, so the lack of consistent oxy likely contributed to feeling those waves of pain in the early morning. The pain at this point is a mix between a burning/tingling sensation and a strong ache. The burning/tingling sensation I think is largely due to the nerves repairing, and from what I read, pretty normal for the first couple of months. Hoping that doesn't last super long, but at the moment my feeling in that foot and up into the shin is not 100% yet -- maybe around 70%. That said, I did get out of bed today and go to my in-law's for Christmas Eve morning and another family party in the evening. All in all was out and about for a good 12+ hours today. A little aggressive perhaps, but worth it. I tried testing some heel weight bearing on the foot today and I could do so comfortably in a seated position, but when standing up it's still really difficult and pretty painful if I put any real weight on it. The nurse said I could walk while heel weight-bearing without crutches after a couple of days if I was able to, though I'm pretty sure you'd need the athletic and recovery ability of LeBron James to pull that off. Much to my chagrin, I ain't that guy, pal. Onward we go.
• Day 4 - To those of you that celebrate—Merry Christmas! Slept through the night easy, no interruptions, which was great. Also woke up with much less tingling and more feeling in my foot/lower leg. Still some tingling to be sure, most heavily concentrated on the sole of my foot. Feeling is still only about 70-75% up the rest of my leg to the knee area. There is also still an ache and tightness to the area where I suspect the incision is and just below. All that said… I might be LeBron James after all. I was able to “walk” quite a bit today without the assistance of crutches. I also made it up and down the stairs (shoutout to the banister) without human help. Admittedly, my “walk” is at best a 1 mph shuffle. That didn’t stop me from feeling like a god as I hobbled into my living room this morning. This is certainly NOT medical advice, and you should 100% listen to everything your doctor says, but what has worked well for me in past recoveries is being as aggressive as possible within the parameters your doctor gives you. Due to soccer I’ve had two knee surgeries in the past and in the first recovery I was very timid. This overly conservative approach cost my recovery dearly and the atrophy caused by fear was ultimately more harmful than helpful. Again, your aggressiveness absolutely and unequivocally has to stay within the parameters your doctor gives you, but even when it’s uncomfortable I like to push it. Now, I might be writing an update tomorrow about how sore my foot is from pushing it today and you can all say “look sir esquire, you’re an idiot” and you might be correct, but that’s the angle I’m coming at this with. Overall, day 3 to day 4 has been by far the biggest improvement in pain and functionality. I don’t expect another chunk gain like this tomorrow, but it’s nice to soak up a W when you can during recovery. Onward we go.
• Day 5 - Didn’t do a whole lot today so going to keep this update short and sweet. I barely used the crutches today and was mostly doing my shuffle everywhere. Foot really wasn’t as sore as I expected it to be from being so active yesterday, so that was very encouraging. One thing I have noticed the last few days and continue to notice is that when standing my calf and into my foot feels strained and almost swollen after a while. Of course you always want to be in the lookout for a blood clot when you have symptoms like that, but that’s not what this is as there is no visible swelling or discoloration and the symptoms alleviate depending on position of my foot. I suspect it’s more so from keeping the foot elevated 90% of the day that when it’s not the blood flow feels weird/swollen. Not really a huge deal, but is something i notice consistently when standing after a while so wanted to note it. Other than that, when “walking” you can definitely feel the point in your foot where if weight would get there it would be v painful so just being cognizant of that when moving around is helpful. Anyway, overall I think it’s doing quite well for day 5, but nothing else major going on at this point. Onward we go.
• Day 6 - No crutch use at all today and much less painful to walk! Of course, gait is still very odd but the shuffle is closer to a half walk now. The numbness is still there but the tingling is isolated completely to the sole of the foot and is getting less aggressive day by day. I’m still taking acetaminophen, meloxicam, gabapentin and aspirin, but honestly not sure i need anything but the aspirin at this point. Gonna ask the doc if i can cut the others at the one week mark. I’m going to try to do a non-foot-weight-baring workout tomorrow so we’ll see how that goes (think core and isolated upper body). Last daily update tomorrow then i’ll follow up in a week after that. Onward we go.
• Day 8 - Doing this update on the morning of day 8 since I missed the day 7 update. At this point progression seems pretty linear so far and I’m still not using crutches and walking is getting even easier. I did sit in a normal position for an extended period of time to play some poker and I definitely felt my foot was more swollen after that but didn’t have any functional inhibition as a result. Planning on going out to dinner on NYE which will be another couple hours sitting in a non-elevated position so I expect the same thing to happen, but gotta live your life! I have my follow up with the doctor on Jan 4, so I’ll update after that. Onward we go.
• 2 Week Post-Op - Just left my two week post-op. First thing we did was take x-rays to confirm that all of the fibular sesamoid was successfully removed, which it was! Next we chatted about recovery moving forward. Still in the heel weight bearing boot for four more weeks (that makes 6 weeks total in the boot) then should be back in a shoe at that point. I can stop taking all meds except for the aspirin since it’s vital for blood clot avoidance. I’ll probably just taper off slowly over the next 3-4 days. I’ll also be able to start PT at week 6 which i am STOKED about. I can also workout as long as nothing is weight bearing on my recovering foot—more on this in a separate section later. After that discussion we went to stitch removal. Holy F did that hurt. Idk if it’s because my skin tends to heal around the stitches or what but the nurse remarked several times that they were dug in really tight and that’s the second time i’ve had stitch removal where the nurse has said that. Anyway, I’m glad they’re out now but that was the most painful part of any of this process so far. Now i’m in a lighter wrap (some light gauze and an ace bandage). I have to keep the foot dry for 2 more weeks then i can take off the wrap and shower normally(!!) I’ll update in a week. Onward we go.
• 3 Week Post-Op - So I started working out over the last week or so. The good news is that it feels great to do some activity again, bad news is definitely more swollen than I was prior to working out. It’s mostly from having my foot in a non-elevated position, but still a challenging consequence of activity. The good news is if you’re creative you can do a lot of different workouts. As long as I don’t weight bear outside of the heel area i’m good to go. Outside of that i have noticed way less/almost no nerve burning in the foot. The upside to that is my nerves are healing, the downside is.. well… my nerves are healing. I have more “traditional” pain while walking now than I did before the stitches were out. The reality is it’s been three weeks since my foot was sliced open and a bone was pulled out, so frankly not shocking. That said, pain is always way worse when the foot is more swollen, which perhaps is no shocker. Still targeting week 6 as gym shoe switch day so we’ll see. Onward we go.
• 4.5 Weeks Post-Op - Alright so things are still progressing but definitely getting to the grind part of surgery rehab. As I’ve mentioned before, this isn’t my first rodeo when it comes to surgeries and right around the 4-8 week mark you really gotta start grinding mentally. You get to the point where you’re sick of being hamstrung and you also have quite a bit of recovery to go. I’m hitting that part, but also cognizant this is the time to not get complacent. I’ve been able to workout every day and that’s been a god send. Mostly i’ll do core work, but also will do 3x10 hamstring curls and quad extensions (on both legs) by using a door anchor with resistance bands strapped to my ankle. This is a very cheap set up and highly effective. I want to be in the best shape I can be once i’m back at it, so not getting discouraged during this down time is pivotal. From a pain standpoint, im more or less constantly experiencing some level of aching pain in my operative side lower leg and foot. It’s not enough to stop me from working or doing stuff, but it does get very annoying at night when im either trying to go to sleep, or i wake up from it. It’s the nature of the beast though, i’m walking a lot and doing things in a boot that elevates half my body higher than the other, reality is that’s going to cause discomfort. My incision area and big toe are still very very numb but i’m trying to poke the incision spot and massage it to start to get that feeling back and desensitize some of the weird pain associated with the numbness. I’m supposed to go to the doctor a week from today to switch into gym shoes which seems optimistic, but i’m gonna give it a shot. I can walk ok right now but all in the boot and sometimes i take a step that’s just brutal. I suspect this is a function of the tissue repair and scar tissue, but going to ask the surgeon when i see him how much i can push through the pain before it’s counterproductive. Still targeting PT starting at the 6 week mark then no restrictions at week 10. I’ll update after the doc. Onward we go.
• 6 Weeks Post-Op - OUT OF THE BOOT. Got out of the boot on Tuesday and it has been an absolute revelation. Doc said everything is healing great so far and to my eye the incision looks better than expected (basically just a light pink scar). First time putting the shoe on was tough, but I was able to get my foot in and limp out of the doctor's office just fine. Definitely a lot of pain, but actually less than in the heel-weight-bearing boot, because after six weeks both my heel and outside of foot we're aggravated. Over the course of the next few days, walking around in sandals and taking showers barefoot started to get easier and easier. I started PT on Friday and that has been refreshing. I was itching to get some rehab exercises to help stretch and strengthen the foot area and I'm glad I can start grinding. Now, five days after being out of the boot I have't put it back on once since and I feel really good. I can walk with almost no limp and very minimal pain--less pain than pre-surgery. I could see a world where, assuming I grind PT, at the ten week mark I'm ready to start golfing in the simulator again. Pretty wild how big of a stride the healing took between weeks 4-6. At week 4 I thought there was no way I'd be moving around as seamlessly as I am now. Granted, I'm not walking miles on end or anything and it's still sore, but I am stoked about where I'm at to this point. I'll follow back up around the 10 week mark
• 12 Week Update - Since week 6 we’ve made MASSIVE strides (literally and figuratively). I did PT for 6 weeks (though 2 of the 6 were self-guided since I was out of town) and it couldn’t have been more impactful. What I hypothesized going into this injury has so far been proven correct and that is to be very aggressive in my recovery. All I can recommend here is doing your PT relentlessly and pushing yourself as much as you can. At this point I am walking with no limp, working out pretty normally and doing 80% of the activities I want to do, which at 12 weeks is a great spot. The pain is minimal (WAY less than pre surgery) and my strength is returning. At this point the only thing I haven’t tried, which is mainly because I never did it outside sports anyway, is running. Once I give that a shot I will update. One thing that has been a really big help and that I would definitely recommend to help fight the potential hallux deviation (which causes bunions) is using toe socks and separates when you can and using Yoga Toe Gems at least once a day for a period of time. I will be switching to five finger shoes with toe socks shortly and plan on spending a lot of effort on foot strength and mobility. I’ll update again at 16 weeks, but at this point I couldn’t be happier with my decision to get surgery. Onward we go.

Return to golf
If you don't play golf, feel free to ignore this section--though it will have information about my functional progress so still may be good.
My background in golf is that, as I mentioned earlier, I started playing for real post-law school in 2019. At that point, I was probably around a 25 handicap and really just had no consistency at all and overall sucked. Since then, I've worked my way down to an 8.5 low H.I. and can't wait to get it lower (is my handicap relevant at all to this? Probably not, but it took a lot of work to get there so I'm going to not humbly brag about for now).
I wanted to create this section with the sole purpose of showing what optimizing recovery to play golf as soon as possible looks like. I will chronicle my timeline to the first swing back, how the swing is feeling, if there are any complications with the foot, whether my swing and scores improved post-surgery, and really anything else foot and golf-related that happens throughout this time.
I used to go to the range 2-3 times a week and play 2-3 times a week, so I will consider getting back to that frequency, getting back to "normal".
Hope you all enjoy this and can at least get more information on what a surgical route and post-op looks like. Cheers.
Update 1 (one week out from surgery): Nothing major but i was able to practice putting. I can stand in an almost normal putting stance, but of course weight distribution is less balanced than i’ll be once healed. In any case I was able to do a full putting drill in my basement that took around 15 minutes. Short game is going to be dialed!
Update 2 (4.5 weeks out from surgery): More or less the same on this front. However, i have been doing core and thoracic mobility exercises to help with my swing mechanics. I’ve also been able to do a lot of standing drills for 10 minute periods. Nothing with club in hand, but hip rotation and shoulder position take back drills are in play. Should have more ability once i’m out of the boot at the 6 week mark.
Update 3 (6 weeks out from surgery): Continuing to putt, but I can also do take back drills now. Since I'm out of the boot, and the pain isn't prohibitive, I've been trying to work on slow motion take back drills until I can start doing full swings. I expect that over the course of the next couple weeks I'll continue along this path and may go try to do some light chipping at an indoor range, but we'll see.
Update 4 (12 weeks out from surgery): I PLAYED 18 THIS WEEKEND. That’s really all I need to say. I played 18 in cart path only on a windy cold day. I’m still getting used to trusting the foot on the push off, but I shot in the 80s still from the tips so that should be some indication that it wasn’t hampering me too bad. Still a lot to be done to walk a full 18 and play pain free and strong, but i’m just so happy i’ll be able to play all season. Once I can walk 18 and push off extremely hard on my swing I will update again. Cheers.
P.S. HUGE shoutout to my wife who has made this recovery 1000x more bearable than it would have been otherwise. Love her to death and she’s been a total champ with helping and deserves major props.

31M, 5ft 10, male, white, 14st
Hi all, so a bit of an odd one that I could really do with some advice on.
So just before the pandemic, I noticed that my legs were hurting a lot, just below the knees - it was an ache, like a really heavy ache. I accidentally bumped a leg on my desk (like, not-even-enough-for-a-bruise lightly), and it felt like I'd broken it. Dad took me up to the hospital for a x-ray, where the doctor found 12cm square of avascular necrosis in my left leg, and lots of spatters of the same in my right leg (imagine like, splashed water , lots of little dots). I've spent the last 3 years having every test I can think of, being checked for cancer, Addisons, and a million and one other conditions I can't even remember. All negative.
I had a bone graft last year in my left leg, which frankly has done nothing, and the thing that's frustrating me most is that the rheumatologist has run out of ideas. From my side, there's no prospect of improvement, because there's no knowledge of the cause, and because there's no knowledge on that side, there's also the fear I have that there will be more. Does anyone have any idea on what can cause a perfectly healthy 28 year old (I wasn't 14 stone back then) to just have spontaneous osteonecrosis? It really feels like the NHS as a system has let me down, and I don't want to be taking codeine and oxycodone for the rest of my life.

So I got this email from DeSantis' Affirmative Action chief demon sperm doc this morning:

Florida’s Public Health Integrity Committee Addresses FDA’s Inconsistent Drug Approval and Advertising Protocols
Tallahassee, Fla. – Yesterday, Florida’s Public Health Integrity Committee (PHIC), led by State Surgeon General Dr. Joseph A. Ladapo, held a meeting to discuss potential harms of the United States Food and Drug Administration’s (FDA) inconsistent process for drug approval and lack of regulation of pharmaceutical advertising. Florida’s PHIC members expressed concerns regarding the revolving door between the FDA and the pharmaceutical industry, the FDA’s inadequate safety standards, and the lack of enforcement of pharmaceutical data requirements. Based on the PHIC’s concerns, Florida is calling on the FDA to enforce greater oversight of the pharmaceutical industry and bring transparency to consumers on the lack of data within the current regulatory processes in place.
ISSUE #1: The FDA has a two-tier review process, allowing manufacturers to potentially skip clinical trial steps for some drugs.
When the Prescription Drug User Fee Act (Act) was passed in 1992, pharmaceutical developers were required to pay increased fees to the FDA for review of their applications, including requests for expedited review. “Accelerated Approval,” “Breakthrough Therapy,” “Fast Track Program,” and “Priority Review” allow “earlier approval of drugs that treat serious diseases or drugs that fill an unmet need.” The “Accelerated Approval” waives clinical trial requirements and allows FDA to approve the drug based on other data, such as blood testing or imaging. The “Fast Track” program allows the industry to submit information on a rolling basis rather than a complete application. Overall, nearly two thirds of the FDA’s medical product budget come from industry and nearly half of the total FDA budget now comes from industry user fees. This has increased substantially over the last two decades, leading some critics to raise concerns that the agency prioritizes the pharmaceutical industry’s agenda over the health and safety of patients.
While such opportunities seem altruistic, the FDA is approving more drugs than ever, and evidence shows it has allowed Big Pharma to cut corners on drug safety and efficacy. The opioid crisis exemplifies how Americans can experience the catastrophic effects of these risks. While the FDA typically requires at least two randomized controlled trials demonstrating clear effectiveness against specific conditions, extended-release oxycodone received approval based on only one two-week clinical trial among osteoarthritis patients. The FDA then allowed the labeling of this opioid to be prescribed broadly for many conditions resulting in Purdue Pharma promoting the drug for off-label treatment which is typically prohibited.
This pattern has also been observed among oncology therapeutics that are approved based on the apparent size of a tumor on a scan or image rather than how the medications affect the patients’ survival or quality of life. At the same time, it can take nearly four years for accelerated cancer treatments to be withdrawn by the FDA when they are found to be harmful or ineffective.
The federal response to COVID-19 has further shed light on these regulatory errors and continued lack of transparency. Following the FDA’s approval of the mRNA COVID-19 vaccine, both Pfizer and Moderna were instructed to conduct clinical trials investigating the effects of subclinical myocarditis. Neither Pfizer or Moderna have published or communicated to the public results from these studies nor do advertisements for the COVID-19 vaccines warn of the established risks of the products.
ISSUE #2: According to the FDA, there have been more than 15,000 drug recalls since 2012 – averaging more than three drug recalls per day.
Recently, the FDA recalled popular over-the-counter cold and allergy medications that contain oral phenylephrine as a nasal decongestant, nearly 50 years after its initial approval. At the time of approval, the FDA didn’t use adequate clinical data on the drug. Now, the FDA has considered the drugs’ clinical symptom scores that indicated ineffectiveness. For decades, families wasted time and money on ineffective medications based on “murky” evidence. Another example is, Makena, a drug approved to reduce the risk of preterm birth; however, the FDA finally removed it from the market 20 years after it had not only been repeatedly found to be ineffective but also carried increased risks of preterm birth and miscarriage.
ISSUE #3: Drug advertising is not reviewed for accuracy prior to public consumption.
The United States and New Zealand are the only two countries that allow drug manufacturers to market advertisements as “Direct-To-Consumer” (DTC). In 2015, a survey conducted by the FDA published that while “many DTC ads helped patients be more involved in their health care,” the data indicated that about 75 percent of physicians believe that such ads cause patients to think that the drug works better than it does and pressure providers to prescribe something when patients mention such ads.
While the FDA requires prescription drug advertisements to include certain disclaimers, they do not see or approve drug advertisements prior to reaching consumers’ televisions or phones. As soon as a drug receives approval, accelerated or not, manufacturers are able to advertise the drug. The FDA has acknowledged this unfortunate reality and states advertisements “may violate federal laws” as they are being viewed by the public until the ad is corrected or withdrawn.
In this spirit of transparency and integrity regarding American health care, the PHIC has developed infographics outlining the drug approval and the direct to consumer advertising processes – from initial development to your prescription cabinet and screen.
“I want to thank all of our PHIC members for joining us today and for their continued dedication to preserving the health and well-being of all people,” said State Surgeon General Dr. Joseph A. Ladapo. “Florida will continue to fight for truth and scientific integrity.”
“The primary problem that we are seeing with the FDA is that it’s moving away from science when approving medications,” said Dr. Linda Wastila. “Relying on application fees and surrogate end points only further enables the revolving door of the pharmaceutical industry self-regulating itself.”
“The United States is in desperate need of a regulatory agency which prioritizes human health over pharmaceutical industry profits. One critical step in achieving this will be increased transparency from the FDA,” said Dr. Tracy Beth Høeg. “Raw, de-identified data from vaccine and pharmaceutical trials should be made available to the public. Timely information should be provided to the public on post-marketing surveillance studies as well as vaccine and drug product side effects. Finally, prior to drug and vaccine approval by the FDA, clinical trials should determine if the benefits of the medical products outweigh the risks for the population they are intended to be used in.”
“We saw in the COVID-19 pandemic how some exceptions, when abused, led to the harm of patients rather than their health and well-being,” said Dr. Jay Bhattacharya. “Rather than allowing pharmaceutical companies to conduct their own safety assessments, the FDA should conduct very rigorous phase 4 clinical trials.”
“Surrogate end points allow Big Pharma to avoid conducting proper clinical trials indefinitely,” said Dr. Joe Fraiman. “By continuing to expedite the regulatory approval process, the FDA is robbing Americans of the health and well-being they deserve.”
“The federal government should place a much heavier emphasis on phase 4 clinical trials,” said Dr. Christine Stabell Benn. “By taking the safety analyses out of the pharmaceutical industry’s hands, the FDA will be able to conduct the proper rigorous standardized trials that are necessary.”
“Unfortunately, due to the FDA growing more lackadaisical, the pharmaceutical industry does not carry the same reputation that it used to,” said Dr. Martin Kulldorff. “The conflicts of interest at bay are directly linked to political influences and the incredible amount of money circulating within the industry, leading to a complete lack of accountability.”
About Florida's Public Health Integrity Committee
Florida's Public Health Integrity Committee, overseen by the State Surgeon General, assesses federal public health recommendations and guidance to ensure that Florida’s public health policies are tailored for Florida’s communities and priorities.

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A lot of stuff in this letter seemed to make a lot of sense until this red flag came up “We saw in the COVID-19 pandemic how some exceptions, when abused, led to the harm of patients rather than their health and well-being,” said Dr. Jay Bhattacharya"
What are they talking about? Is this anti-vax non-sense? What "harm" to patients was caused by the FDA? I know Bhattacharya was outspoken about lockdowns being too long, too intense or just too much. And I get that point, as the left coast kind of fucked itself by locking down too long and hard. But I don't trust DeSantis and his demon spawn Health Department more than I don't trust the FDA. So what is this letter about. I think it's just about DeSantis trying to destabilize the federal government, by picking legitimate concerns, BUT having the end goal of establishing a Russia-like state for America where DeSantis plays the role of Putin.

& Bonus shot - I brought Dr. Clayman's Textbook for him to sign. My husband was insistent and if anything it gave him something else to focus on during the day. I was convinced I'd read the textbook to know exactly what was going to happen to me, but honestly my cat mostly used it as a pillow in the week or two I had it prior to surgery.
Edit: Here's the photos (not showing up for me) and repasting my post as it seems to have disappeared: https://imgur.com/a/lvjyBOe  

Disclaimer

This is going to be extremely in depth because I have some "weird" health issues that I haven't seen discussed much (POTS / dysautonomia) and I'm a singer so my voice is extremely important to me. Please keep in mind, everything I say here is just based on my personal experience and should in no way be seen as medical advice or recommendation. I just hope this in depth review can help someone make the best decisions about their health :)

Background / Stats

• Age: 33.
• Sex: Female.
• Location: Tampa/Pinellas (Beaches) - approx 1 hr from Clayman Thyroid Institute.
• Thyroid History: Hypothyroidism (low TSH) for ~10 years.
• Family History: No cancer or thyroid issues known.
• Environmental Exposure: None known.
• Occupation: Desk job / engineer.
• Other Conditions: POTS (Postural Orthostatic Tachycardia Syndrome), ADHD, migraine, TMJ.
• Symptoms at Diagnosis: Still TBD - I think my TMJ issues (based on CT) and even migraine may ultimately stem from the nodule. I have no idea how long it's been there, or if it's cancerous yet. (Will update post when I get results).

 

Timeline

7/23/23 - Incidental finding of 1.6 cm partially calcified nodule during chest CT
7/25/23 - Submitted initial request for evaluation to Clayman Thyroid Institute online (was just throwing feelers at this point)
8/3/23 - Initial Phone Consult w/ Dr. Suh
8/23/23 - In Person Evaluation (Bloodwork, Laryngoscopy, Ultrasound - 2.8cm, Solid, TIRADS-5, Biopsy-Bethesda III, no discussion of genetic testing) w/ Dr. Roy
9/19/23 - Left Lobectomy w/ Dr. Clayman (supported by Dr. Roy and Dr. Walsh) (note: they take the lymph nodes behind the thyroid and test them for cancer in the operating room, to make sure surgery is complete.)
 

Reviews

Overall Review: 9.5 / 10
Going to do some high level over views, then deep dive into my exact experience with both the evaluations and surgery. Overall everything was QUICK but thorough. I feel like I made the right choices, and am healing well, but only time will tell.
 
Doctors: 10/10
Absolutely the best doctors, highest success rate, highest operation rate in general (something like 600 per surgeon per year). Dr. Clayman has been focused on thyroid surgery for nearly 3 decades and it's been his vision to have more specialized care centers that represent best in class and I think he absolutely achieved that with this hospital. The 3 other thyroid surgeons (Dr. Roy, Dr. Walsh, and Dr. Suh) all interacted with me personally and were amazing, caring, and incredibly intelligent - the exact people you want working on your body. Even the anesthesiologists were top notch. I'm local to Tampa, they're in-network for my insurance, so for me it was a no brainer. It may not be as easy of a decision for you.
 
Surgical Techniques: 10/10
Obviously a top notch surgeon is going to give great surgery. But I'm also a singer, and I have POTS (Postural Orthostatic Tachycardia Syndrome) which is basically dysregulation of my autonomic nervous system, particularly manifesting in an unsteady but elevated heart rate and unsteady but low blood pressure, essentially leaving me exhausted after even really basic tasks, and also prone to passing out if I push myself too far. I've been in a bad POTS episode since about April, rendering me practically debilitated most days if I'm being honest (my chest CT was related to this initially!). However, I've been having success with treatment lately (specifically Midodrine to raise my blood pressure, compression tights, and electrolytes) and I didn't want anything during surgery to go wrong and hinder my progress, especially because I've had minor complications after anesthesia before - both flaring my POTS and throat discomfort impeding my singing from the intubation.
I read a few studies about POTS and surgery here in particular! so at midnight at my food cut off, I took extra electrolyte pills. Then the morning of, I informed them and I requested immediate IV fluids due to my POTS. They kept me on fluids I think more than they otherwise would have (per surgical notes and comments they made). I had not taken midodrine the morning of surgery - they say don't take it if you're going to be lying down - but they gave me a dose immediately post surgery (while in the recovery room, before being brought out to my husband).
I also asked the anesthesiologist to use a smaller tracheal tube (I had read that recommended here - THANK YOU). He said something I don't remember - that it wasn't only the tube but I don't remember what he actually said - and regardless of what he said, I have honestly no throat pain at day 4. I was sore for MONTHS after my last surgery. I have some neck soreness externally, but both of my requests - about staying hydrated and not hurting my throat - were honored.
Now the reason I was extra keen on the Clayman Thyroid Institute was actually due to a small note on the bottom of one of their webpages mentioning amniotic fluid being used to minimize injury to the laryngal nerve. It seems like they don't advertise this much, but it's on their webpage, it's in my surgical notes, and they've published a study on it here. Being a singer, anything to help keep my voice operational is of utmost important to me.
They also live monitor the laryngal nerve - I don't know how common this is (I think more common than the amniotic fluid), but it's something they do with 100% of surgeries (their website makes it seem like only robotic surgery does this, but it is all per my discussions with them, and it was done standard per my surgical notes). Knowing that this much attention was being given to my voice was really, really important to me.
 
Facility: 7/10
The lobby and pre/post-care (?) rooms are SO nice and modern. I did my pre-op evaluation at the hospital and that's all I saw. The day of surgery I was brought to a bay (one of maybe 30?) and literally started crying thinking I was in the wrong unit of the hospital. I had read reviews before stating how it's only an endocrine hospital, BUT they have an emergency department (you can see, separate entrance across the parking lot) AND a psychiatric hospital on upper floors (I gathered from Google reviews, plus staff telling me they avoid it lol). The endocrine unit is completely isolated (so they rightfully claim COVID free) - and it turns out all the bays were other endocrine patients, but it was so different from what I had experienced on my first visit I was really taken aback.
 
Billing: 3/10
Both the hospital and the doctors have separate fees, as well as any labs they use. I have had experience with this hospital before (I'm local to Tampa) and had a terrible billing process experience, so I kind of expected it. I knew that I was going to be required to pay some amount up front. I also knew I had fully used my deductible before the appointment, and the procedure would take me to my yearly out of pocket maximum. What I didn't realize is both the doctor and hospital required pre-payment.
I had been emailing with what I assumed was the hospital - they kind of keep a united front in messaging which makes it SO confusing. Then I got a call saying "Hi this is X from Hospital for Endocrine Surgery is now a good time to pre-pay?" I said yes, got a confirmation email/receipt. Then two days later, I got another call - this time from the actual hospital, asking for the entire amount remaining on my yearly out of pocket fees - so excluding the pre-payment I had already made (apparently to the doctors, NOT the hospital) and other outstanding claims I had. They had "no record of my payment" and they told me I could pay now to save 20%. Why do I care if my insurance saves 20%? I'm going to have to pay the out of pocket maximum regardless. It was a lot of hassle and they finally told me I could talk to someone once I arrived. I did, and it was a whole other hassle - the woman was very nice about it all, and understood the situation, but kept trying to get me to pay at this point just something.
Ironically, when I spoke to them on the phone, I was willing to pay $1k but they couldn't accept a partial payment?? But now that I was in the office I realized - and this is probably just a flaw with the insurance industry - whoever files a claim first - the doctor OR the hospital - is going to take the remainder of my out of pocket maximum. Since I've prepaid the doctor, if the hospital files a claim first, they're going to have to wait until the doctor reimburses me to get that money. If the doctor files a claim first, the hospital will never get a dime from me out of pocket. I didn't want to complicate the situation and wait for reimbursements. They let me not pre-pay given the situation and the way things were (not) explained (mind you I have an HSA with more than my out of pocket requirements, I just don't want a hospital/doctoetc holding onto MY money!!) But I honestly felt when I was brought to the bay that I was getting second class treatment for not prepaying and that's why I had a mini meltdown. This wasn't the case at ALL - it's just where my mind was pre-surgery thanks to their processes.
 
Email Correspondence: Initially 9/10. Once procedure scheduled, literally 1/10
The staff was really nice in getting all of my paperwork set up, getting records to my chart, answering my questions about the processes, etc. UNTIL I had my surgery scheduled. They literally went MIA and I had a lot of questions pre surgery, after lab results came in from the in person evaluation. I emailed the intake staff, then realized I had an email given to me for pre-surgery questions, so I sent to them instead. I think this was a nurse and understandably they're busy, but I received ZERO response to either of my emails. Not even a "hey try this person!".
My situation was a bit complicated because I only ever wanted to have surgery from Dr. Clayman, but my phone consult was with Dr. Suh and my in person evaluation was with Dr. Roy. I had their emails, and I'm sure I could have emailed either of them, but I just didn't want to bother. I ended up discussing with the nurse who called to do my in take. Her response was literally to discuss with my doctor the morning of surgery. WHICH IS FINE - that's what they do, most patients are out of state and they only are seen the day of - but I did not feel GREAT about it.
 
Phone Correspondence: 6/10
They answered all my questions, but like above, a lot of the answers were "oh the doctor will help you with that, don't worry". It's their policy to keep you not worrying, and so they don't want to talk about anything distressing - I mean most people have cancer and they basically assume it's cancer until you have a negative diagnosis - better safe than sorry. However, I wanted to be more in the light about what I needed to do. I didn't need to do much - they take care of everything, you really don't need to prepare at all (except stopping certain medications, they have a generic list they send out). But I just felt like I wanted more and it wasn't available - I know they need to standardize and for them it is so routine, but I just felt like it wasn't quite as personalized as I would have expected unless I was talking to the actual surgeons.
 
Phone Consultation - Dr. Suh - 10/10
At the time, we only had a CT scan showing a 1.6cm nodule - it wasn't noted it was solid or calcified (I just interpreted that myself, correctly, but he couldn't use those results). He was willing to look at the CT but there was an issue with the file transfer (and their email staff did help me and try numerous methods - I crashed their computer LOL). Ultimately he went over robotic surgery in detail vs. regular surgery. What surgery would entail. Emphasized that I may not need surgery HEAVILY (which I appreciated). And we agreed to do the in person evaluation. I wasn't sure why I was paired with him, but he was very nice. He answered all my questions very thoroughly. He even predicted questions I didn't have. He let me know all the risks / benefits / pros / cons of any single option I had and any path stemming from current state. I felt completely ready to tackle my thyroid nodule whether it was benign and could stay in, or if it was cancerous and needed to be completely removed, and felt like I understood every single option for surgery and preserving my voice. I just felt really confident he was great.
 
In Person Evaluation - Overall - 10/10 (except the laryngoscopy and biopsy which made me puke and hurt respectively!!)
I was immediately met and brought to an office (with my husband) where I did paperwork. They stressed no payment was necessary now several times and meant it (although I did get a bill - hospital much more expensive than doctors FWIW!). I was given a hospital bracelet which surprised me. Then we were told to wait to be called back. We sat in a beautiful waiting room area and also checked out the cafeteria (with I believe free food). We were brought back to a room with an ultrasound machine in it and a hospital bed. It had a shared bathroom with the room adjacent to it (there was a lock out procedure so they couldn't walk in on you). I think it had a couch and a table - it was a big room and nice and private. Seemed comfortable. I had a low cut tank top on under a button down shirt. I took off the button down and put the surgical gown over my tank top. First they did an ultra sound, at some point they did a laryngoscope. The doctor and a nurse came in to talk to me, separately and together. We opted for a biopsy. They did the biopsy and doctor came back to talk to me again - no change in recommendation after u/s. Total appointment was about an hour and a half.
 
In Person Eval - Ultrasound: 10/10
The nurse who brought me back was the one who did my ultrasound. She was really nice. I couldn't see at all what was on the screen and my husband had no idea what was going on. She didn't really describe it much and I kind of thought there would be more feedback. The report at the end was just very high level, so I don't really know everything they looked at. Ultimately the doctor (Dr. Roy) told me it was a TIRAD-5 and I also had small (6mm or less) nodules in the other lobe. She said the 6mm nodules were common and did not need to be removed, but it was my choice to remove the thyroid lobe with large nodule (2.8cm) now or to wait. She said if I opted to wait, any path she saw would have her recommending I remove it within a few years maximum and that she viewed it as suspicious and recommended I remove just the one lobe to keep partial healthy thyroid function. One question I never got answered is - I have hypothyroidism - what healthy thyroid are we saving????? lol
 
In Person Eval - Laryngoscopy: 6/10
The nurse who did this is one of the few male nurses and we joked that he gets all the bad/tough jobs (he also did my biopsy). He did a great job - I had no pain whatsoever. They do this to view the vocal chords and I don't know what else but it sounded like as a singer something I wanted them to see ahead of time. My concern was with the taste. He told me it would taste bad- he did absolutely nothing wrong. Really I should rate him a 10/10, but the experience for me was terrible. I vomitted probably 10 times before leaving the office. It tasted so bad and I just puke easily. He was surprised when I told him it made me vomit (when he came back for my biopsy) so I don't think it's common. But potentially be prepared!
 
In Person Eval - Biopsy: 5/10
Honestly this hurt really bad. They do it guided by u/s and they took 2 or 3 samples up front- I don't exactly remember, but I know they wanted 1 sample of calcified part. Doctors are in the room to verify the sample live, so they don't have to go back. They verified all samples were good. They use a lot of numbing cream but I kept saying it hurt and the nurse kept telling me it shouldn't hurt. I had a bruise for about 2 weeks and pain for about a week post the procedure. Due to other complications (Ehlers Danos Syndrome - not d/x but genetic testing in process, common in POTS patients) I may be less sensitive to local anesthetic so YMMV. I was glad his samples were good right off the bat and didn't need to be redone.
 
In Person Eval - Doctor Follow Up - 10/10
Dr. Roy was really responsive to all of my questions. I don't want to get repetitive. My husband really liked her and wanted her to do my surgery - she was there with Dr. Clayman the entire time. They do the procedure in pairs. For whatever reason I just really wanted Dr. Clayman even though I had never met him. She has a bit of a confidence vibe going. Like when I asked if they just take half the thyroid how will they know all the cancer is gone (if it's cancer) and she looked at me almost perplexed for a split second and said "that's literally what we do!" it came across like confident - like you'd want that from your doctor - not arrogant - like I'm potentially describing - and she was more than willing to answer follow up questions and make sure I was comfortable. I just personally want more information from the start. She was really thorough though when I prompted, and her vibe really made me feel at ease. I really really liked her, and liked her more throughout my surgery day. I highly recommend Dr. Roy or any of the surgeons based on my experience!!
 
In Person Eval - Phone Follow Up - 10/10
The nurse who did my biopsy called me at 8AM the morning following the procedure to go over all my results with me and let me know the doctors recommendation. He stressed I didn't have to make any decisions now, someone would be calling in a few days for me to have time to think things over. He also stressed it wasn't definitely cancer, but it also wasn't definitely not cancer. He was really supportive and kind. I REALLY like him - he just hurt me with his biopsy and his laryngoscopy lol. I think it was almost a week later when they called to schedule surgery and it was just a given I'd be scheduling - not at all like when talking to the nurse. There was a big difference in nurse vs. hospital staff vs. doctor in general.
 
Day of Surgery - Overall - 7.5/10
Obviously it started with the billing fiasco I mentioned, then being brought back to a bay. At this point I'm a bit rattled. They close a curtain and want me to change, but then open it right back up and ask if I'm able to get pregnant and have me pee in a cup instead. It was a bit disorganized / chaotic. Finally once weighed (they weigh you in front of everyone but in KG if this is important/sensitive to you at all), changed, and sitting in a hospital bed the doctors start coming in. Every surgeon, anesthesiologist, etc, came by individually (or in groups) to answer my questions and talk to me prior to the procedure. I felt really confident about everything - had my needs me with the fluids, smaller tracheal tube, etc mentioned above.
 
Day of Surgery - IV - 6/10
Probably due to POTS they had really a hard time sticking an IV in me. I had a 7AM arrival time and was back in the bay around 7:30 if I had to guess. Multiple nurses tried to stick me - mind you I get IVs all the time (for POTS, lol). They finally had an anesthesiologist who literally crouched down eye level with my hand, pulled like a quarterback move with the IV and stabbed me in my hand. It went in perfect and didn't hurt - never saw that technique before lol.
 
Day of Surgery - Surgery Prep / Doctor Discussions - 10/10
Besides the IV everything to prep was really thorough. I was surprised they didn't do an ultrasound again but Dr Clayman just marked me up with a sharpie?? Regardless the more surgeons and doctors that stopped by the more and more confident I felt that I was in the right place and getting proper care. The nurses were really great and made the day more enjoyable. As one was having trouble getting my IV in, the other was making jokes and trying to distract me to make it less excruciating. Overall I really appreciated everyone!! Dr. Roy and Dr. Clayman came by together. The anesthesiologist came by right after they did my IV and I was feeling uneasy, so he came back again a second time - so did others. Dr. Walsh also came by as he was part of my surgical team, but not my surgeon. Each surgery has at least 2 surgeons present, but they're all available to consult from what I understand. Every doctor was really thorough to make sure I understood what was happening, and that all my questions were answered.
 
Day of Surgery - Actual Surgery /Anesethesia Prep - 10/10
I mean I Have to rate this 10/10 as I have no complications. They rolled me back had me verify what I was there for, transfer to a different bed. But when they started putting the anesthesia in my vein it hurt BAD. It hurt my hand. The anesthesiologist was like "don't worry it won't hurt long". But then it started hurting up my arm. I remember like writing in pain -and then just as he said it didn't hurt long. I woke up some time later not remembering anything past that so I guess he did a good job lol. They also confirmed with me my procedure and that I knew what was going on before that happened.
During surgery my husband said the nurse called him every 5-10 min to let him know what was going on. I think the actual operation was under 30 minutes so I don't know how many calls that entails. He said he kept getting calls until he was in the recovery room with me every 5-10 minutes. Regardless, they keep your family thoroughly updated.
 
Day of Surgery - Surgical Recovery - 8/10
There were a couple really nice nurses doing my recovery before I was rolled out to the bays again. I remember complimenting one of their hair lol. I don't remember that much I was kind of in and out of it. Since I had only a lobectomy I could go home the same day. They had me in a chair for recovery right away when they rolled me out. It was comfortable enough and I could put my feet up. They gave me a Popsicle and a small bottle of water. My husband came back by me. At one point he had to grab something for me from the car and they made him wait again in the lobby/waiting area and he was gone for like 40 min (no one came for him, finally a nurse just went to grab him for me) and that was annoying so I docked a star for that.
The other issue is like they didn't feed me. They gave me a Popsicle, and they kept offering my husband food, but they gave me 1 small bottle of water and that's it. They ASKED if I needed anything - but I was dozing in and out I don't know what I needed. I just expected to be offered food - they said to return to normal feeding. Luckily my husband had a bag of snacks for me. I Just thought it was weird they didn't offer to feed me. I'm not obese and no judgement if you are - but I'm a pretty small 140lb 5'6 woman and I just need my snacks ok lol. During the recovery period, all the doctors came by again to discuss what they did and what my follow up care was. Luckily my husband was there because I don't remember any of it, but it was very thorough. They also gave me photos of both my thyroid (literally is just a nodule from the looks of it) and the two lymph nodes they removed / tested for cancer (negative - so they stopped at the lobectomy, otherwise they may have done more lymph node / thyroid removal, depending on what they saw). I'm still waiting for biopsy of nodule - should be in sometime next week.
 
Day of Surgery - Discharge - 8.5/10
The discharge paperwork is long and generic. I don't know exactly what I'm supposed to be doing. They went over it in person, but I was too out of it. They give the doctor cell numbers and that's the easiest way to figure anything out. They highlight what's relevant to you personally instead of just not including it. I just personally want things a bit more clear. They also called my oxycodone into a Walgreens which was out of stock. I don't know why they didn't fill it at the hospital. Luckily I saw the text saying they couldn't fill it same day, so the hospital called it into CVS. Well a day later the Walgreens also filled it. I only took oxy the night of once, and the next morning once, but I could potentially have a double prescription which seems like not the most controlled way to manage a controlled substance?
 
Recovery - 9.5/10
So far, my recovery is going WELL I think. I just think my incision is more swollen than it should be. I haven't slept with my head elevated the past two nights, so I'm going to return to that. My singing voice is mostly normal - there are points I lose control and I feel tension across my incision, and it's hard to get control in the upper register, but I'd put it at 90%ish recovered and it's only day FOUR. I thought I'd be out MONTHS, but it's looking like (optimistically) I'll be back much sooner!!! I'm not worried about scarring at all. I do have a weird scab like thing - I have no idea what it is. I think the nurse is worried about it because she kept asking me if the doctor had seen my incision yet. He had and said it looked fine. A layer of that scab thing peeled off a day or two after surgery. IDK it's still there.
 
Here's what I HAVE done for recovery:

• Taking tums (I have my parathyroid glands in tact and don't need them, but I enjoy the chewable cherry tums so I don't think it hurts?)
• Eating PRUNES (thanks to you guys. I started having 1-2 prunes since the day before surgery. I'm pooping possibly more regularly than before - almost every time I go to the bathroom and there's no strain ;)).
• Drinking Metamucil - I can't find the scooper, so I've been drinking also since a day before surgery and I just pour a bunch in a cup and if/when it's too gelatinous I water it down and sip it all day.
• Squatty Potty - JK I'm actually not using this and I have one?? but the prunes and Metamucil have been adequate
• Advil - 600mg every 6 hours for first 3 days. Didn't take any today (day 4) and no pain.
• Neck Pillow - this helps me keep my head aligned when I need to
• Ice Packs - Icing 20 min off / 20 min on pretty religiously but I can't get a good ice pack to neck coverage combo and I think that's part of my issue. Because the incision is like a huge lump, it feels like ice rests on that lump and may make it worse?? I'm not sure
• Wedge Pillow - Slept with this the first two nights and will go back to it again tonight
• Neck Massage - my neck has been REALLY tight - especially massaging just under my ears at the back of my jaw and back around my head - no where near the incision yet. I just started this today (Day 4) and when I started singing (also today) this increased my range TREMENDOUSLY (reduced neck tension) and eliminated a lot of the problems I initially thought I had
• Slurpees - I'm having 1-2 a day. It was sore in my throat for a day or two and this helped. now I just like them lol.
• Cough Drops - I get coughing fits, especially they wake me up in the AM. I'm not coughing up mucus (except once or twice on the first day) but I get something dripping down and the cough drop makes it stop.
• Navage - nasal irrigation - should I be doing this? I have no idea, but I'm a singer and I don't want extra problems with my voice. did it for the first time today. nothing weird in it - wasn't sure what to expect.
• Button Up Shirts - I had bought a couple pairs of button up pjs (in hot pink) but I'm in a normal t-shirt today and it's just fine. I don't think it would have bothered me to be in a normal shirt any day honestly - but YMMV.
• Humming / Singing / Lip Bubbles over Sirens - Just to keep my voice active / healthy. I have trouble with higher notes but it's seemingly all neck tension right now. I feel it pulling across my incision when I sing. I'm confident my voice will be 100% fairly soon.

 
Everything else I bought/ brought I'm not using (besides what I normally use for hygiene, whatever, lol).
 
I will say I had an extensive hospital bag packed and since I was discharged around 3:30PM I never had to use anything (except the snacks my husband fed me, my neck pillow, and a blanket I was grateful to have). The whole time I was in surgery prep, surgery, and then I spent my recovery literally just dozing in and out of it - did not need any entertainment. I even bought a puzzle book reminiscent of plane rides in the 90s LOL, but I didn't even look at my phone while in the hospital!!
 
Local Accommodations - 10/10 Oh, one more thing. Since I'm about an hour from the hospital I DID get a local place to stay. I found an air b&b almost across the street (directly across the street is an apartment complex, her place is right behind that complex. It's a private guest house and it's REALLY nice inside. She also had thyroidectomy a few years ago and she was just SO SO SO SO nice overall. If anyone wants a recommendation and I'm allowed to give one, DM me and I'll share her place. Or just search based on my description.). I stayed from the night before - it was about a 2 min drive to the hospital. Her place was pet friendly which was important so my cat could stay. But I also didn't want to drive far before or after surgery. Plus my husband could stay if I ended up having to spend the night. I stayed there the day after surgery, and had it rented for a third night, but opted to just go home that second day. I HIGHLY recommend her place. It was clean, had everything fully stocked, was so convenient, and the host was SO SO NICE (not at all like recent air b&b horror stories, it had that old school air b&b when it was actually worth while vibe). The hospital partners with hotels so if you are flying in, it's convenient because the shuttle is free and you don't need a rental car. But the air b&b is cheaper, closer, and more convenient / comfortable if you do have a car and/or pet :)

Overall - 9.5/10 (just repeating!)

Overall Complaints * They did not do follow up labs / ultrasound the day of surgery as I was told they would - this doesn't really affect anything, and they DID do labs, I just don't have access to them in the health portal and want them for my follow up with endocrinology next month. * They did not answer my questions about elevated thyroglobulin (granted I forgot to ask day of, but I sent multiple emails) given my complex thyroid history (low TSH and low FT3/FT4, now all of a sudden elevated TSH and elevated thyroglobulin, and how to be sure all cancer (if cancer) is gone given the thyroglobulin levels). They assured me any cancer would be gone - but the thyroglobulin and history of the way my hypothyroidism presents are unique and I don't feel it was addressed. My endocrinologist I'm following up with in October will be able to help, though. * They did not offer me food - this was big to me lol * Billing is going to be messy /annoying until all insurance claims are filed and they pressured me more than I think they needed to * Biopsy HURT * Laryngoscope made me PUKE * Hospital staff was a bit lackadaisical on requirements pre/post surgery - it seems too routine for staff so they don't realize when they're glossing over things, but doctors ARE always available to answer your questions (like text 24/7 - never had this much access to doctors before)
 
Overall Pros * Great surgical team and surgical technique * Extra care taken to preserve my voice and health over all * Really kind and capable and always available surgeons to answer all of my questions (even still available on text/ call) * Really expert surgeons with high confidence / success rates * Personalized surgical techniques based on my medical history * Honestly my pros may seem shorter, but it's because my complaints are SO specific and overall like not critical at all. The pros are why I absolutely recommend this hospital / doctor - would not feel comfortable having gone anywhere else and would have a MUCHH longer list of complaints had I done so.
Any questions also feel free to DM - again, not for health advice, but I'm happy to share my experience :)

Hi all!
I am 27F, and I have been struggling with, well, nobody truly knows yet since I was 12.
Backstory: Mom (52F) has ESRD, dialysis for ~10 years, kidney transplant May 2017. Maternal grandmother cancer, passed approx. 2 years ago, paternal grandfather same diagnosis, passed approx. 3 years. Paternal grandmother passed due to brain aneurysm ~15 years ago, had MS.
Been followed by a pediatric nephrologist until 18. Worked for about a year in dialysis at age 25, got picked back up by a nephrologist once I met him at work (long story, irrelevant, really). Moved to the PNW in December of 2022, just got into a nephrologist and had an appointment two weeks ago.
ANYWAY! For the past (literal) 15 years, I have had so many signs and symptoms of a systemic illness. Decrease in kidney function (slow, but noticeable). On a diuretic to control edema, Zofran every 8 hours for nausea and vomiting, Gabapentin and Oxycodone for pain, and Clonidine for blood pressure and PTSD treatment. Burning pain all over my body, joint pain, nausea and vomiting DAILY for over a year. Migraine, dizziness, and severe issues with speaking. I’m also beginning to have hearing loss.
My PCP out here has been 10000 times more helpful than any doctor I’ve been to. She has sent probably 10-15 referrals to neph, and they never had openings. Until the last referral she sent, in which she sent DETAILED information on my S/S, as well as lab values and her thoughts. Surprise, the called me a week later and I was seen two weeks after.
She also does monthly labs on me, but this last month, she did an additional test. The test came back with an autoimmune disease positive result. She (personally) thinks something along the lines of Lupus, or an igG-4 related disease.
I am so incredibly frustrated over the fact that the past 15 years of going to doctors, nobody even thought to check for an autoimmune disease. And now I get to wait who knows how long for Rheumatology to get in contact with me.
I’m frustrated that whatever is going on has kept me from doing things I love. I had to completely leave the Healthcare field after 11 years, because I am unable to be on my feet long enough. I had to retire from EMS at 26, because I am unable to jump in and out of the rig. I can’t paint, or draw, or anything really, because of the pain and constant muscle cramps.
I feel like my life is completely flipped, because of something that nobody bothered to check. Am I wrong to feel this way? Is the nerve damage they think it may be repairable, or am I destined to be unable to put my own shoes on for the rest of my life? Will it ever be the way it was?

Do you have trouble sleeping at night? Do you find yourself constantly shifting your legs, unable to find a comfortable position? If so, you may be suffering from Restless Legs Syndrome or RLS. In this article, we'll take a closer look at what RLS is, what causes it, and most importantly, what you can do to manage the symptoms and get a good night's sleep.
Key Takeaways:

• Restless leg syndrome can significantly impact daily routines and sleep quality.
• It's the sensation of creeping, burning, tingling, or pulling in the legs.
• RLS symptoms can extend to other body parts like the arms, head, and trunk of the body, causing discomfort.
• Treatment for restless legs syndrome usually includes lifestyle adjustments that limit caffeine, regular physical exercise, good sleep hygiene, and medication like iron supplements, dopamine agonists, and gabapentin to manage symptoms.

What is Restless Leg Syndrome?

Restless Legs Syndrome (RLS), also called Willis-Ekbom disease, is a common neurological disorder. It is characterized by an intense urge to move specific body parts, primarily the legs, to relieve uncomfortable sensations during periods of rest, sitting, or sleeping. RLS can worsen with age and lead to sleep disruption, making it difficult to fall asleep and stay asleep.
Although restless legs syndrome may present in childhood, it is often misdiagnosed as attention deficit disorder or growing pains, and the correct diagnosis may not be made until later in life.
The condition is often accompanied by Periodic Limb Movement Disorder (PLMD), where repetitive, involuntary limb movements occur during non-REM sleep, causing further sleep disruption and worsening sensory symptoms.
While there is no cure for RLS or PLMD, various treatment options and support services, such as the Restless Legs Syndrome Foundation, are available to help individuals manage their symptoms and improve their quality of life.

Symptoms of Restless Legs Syndrome

The major symptoms of restless legs syndrome include:

• An irresistible urge to move the legs often accompanied by an uncomfortable sensation that can be described as creeping, crawling, tingling, or burning.
• Discomfort that worsens when resting or sitting and improves with movement or stretching.
• Difficulty falling asleep or staying asleep
• Repetitive, involuntary limb movements during sleep (known as Periodic Limb Movement Disorder or PLMD) that can cause further sleep disruption and exacerbate RLS symptoms.
• Fatigue and daytime drowsiness due to poor quality sleep.
• Reduced concentration, memory, and productivity.
• Mood changes, anxiety, and depression.

The severity of symptoms can vary from person to person and may fluctuate in intensity and frequency. RLS symptoms are typically most severe in the late afternoon or early evening, but they can also occur when a person sits still for long periods, such as during an exam or while watching a movie.

Causes of Restless Legs Syndrome

The causes of RLS are not fully known, but there are two main types or categories of RLS: primary and secondary, which have different causes and risk factors.
Primary RLS, which accounts for most cases of RLS, has no identifiable cause, and its onset is often hereditary. However, researchers think that it could be related to abnormalities in brain chemicals, such as dopamine or iron deficiency.
Secondary RLS is when another medical condition causes restless leg syndrome. These include iron-deficiency anemia, pregnancy, kidney failure, peripheral neuropathy, or the use of certain medications. In such cases, treating the underlying medical condition may help alleviate the symptoms.
Below we have mentioned in detail a few factors that are related to RLS:
1. Genetic Factors
When a person develops restless legs syndrome at a young age, it may be caused by genetic factors. Research shows that people with an early onset of RLS have as high as 60% of first-degree relatives affected with the same. However, people who develop RLS later on in life tend to have other underlying causes.
2. Neurotransmitter Imbalance
Since it is a neurological disorder, another leading cause suspected is an imbalance of neurotransmitters, especially dopamine. RLS is linked with lower dopamine levels, which causes muscle spasms and involuntary muscle movements. This may also explain why RLS symptoms tend to occur more during the evening. Dopamine levels naturally decrease towards the end of the day, which causes the symptoms to worsen.
3. Spinal cord conditions
Restless Legs Syndrome (RLS) symptoms have been linked to spinal cord lesions caused by damage or injury. Taking spinal cord anesthesia, such as a spinal block, increases the risk of developing restless legs syndrome.
4. Iron Deficiency
Restless Legs Syndrome can also be caused by iron deficiency, which arises from the brain's limited capacity to absorb iron from the bloodstream and transfer it to the neurons. This deficiency can have various impacts on the body, such as controlling dopamine levels, which leads to Restless Legs Syndrome.
5. Kidney Issues
Kidney issues may lead to iron deficiency, which in turn causes restless legs syndrome (RLS). This explains why people with kidney issues are more prone to RLS.
6. Parkinson's disease
People with Parkinson's disease are more likely to develop RLS symptoms. It may be so because both conditions are treated by increasing the brain's dopamine levels. This is achieved by taking certain medications like dopaminergic agonists.
7. Pregnancy
Restless legs syndrome patients may experience a hormonal imbalance during their pregnancy. It is also found that some pregnant women experience RLS symptoms, especially in their third trimester.
8. Chronic Diseases
Certain medical conditions (such as diabetes) can trigger symptoms of restless legs syndrome.

Restless Legs Syndrome Diagnosis

When it comes to diagnosing RLS, your healthcare provider will take note of your medical and family history and ask you to elaborate on any symptoms you may be experiencing. The International Restless Legs Syndrome Study Group has set forth the following criteria that must be met in order for a diagnosis of RLS to be made:

• You feel a strong, sometimes uncontrollable urge to move your legs, usually accompanied by an uncomfortable sensation.
• Your symptoms get triggered when you're inactive (resting, sitting, lying down), especially during the night.
• Symptoms are partially relieved or temporarily improved with physical activity such as walking or stretching.

While the criteria mentioned above are important in diagnosing RLS, your healthcare provider may still conduct additional physical and neurological exams.
Blood tests, specifically those testing for iron deficiency, may also be performed as other potential causes are ruled out. If necessary, they may refer you to a sleep specialist, which could mean an overnight stay at a clinic to evaluate for other sleep disorders, especially sleep apnea.
However, make sure to provide all the information regarding the medications and supplements you take. And also, let your provider know if you have any chronic health conditions.

How is RLS treated?

Sometimes, the key to treating restless legs syndrome lies in addressing an underlying condition. For example, if you have an iron deficiency, correcting it may greatly relieve your symptoms. This could involve receiving iron supplementation orally or intravenously. However, it's important to always take iron supplements under medical supervision and only after your provider has checked the iron level in your blood.
If an underlying condition isn't the culprit behind your RLS symptoms, don't worry - there are still effective treatment options. Your healthcare provider may prescribe medications or recommend lifestyle changes, such as exercise or avoiding caffeine, to help alleviate your symptoms.

Prescription Medications to Treat RLS

When the symptoms are frequent or severe, your healthcare provider will likely prescribe medications to treat the condition. The most prescribed medication options for RLS include:
1. Drugs that increase dopamine
Dopaminergic drugs like ropinorile, pramipexole, and rotigotine patch affect the level of brain chemical dopamine in the brain, thereby helping reduce the motion in your legs.
2. Anti-seizure medications
Anti-seizure drugs like gabapentin enacarbil and pregabalin help reduce sensory disturbances. These medications are particularly effective in patients with painful RLS due to neuropathy.
3. Muscle relaxants and sleep medicines
Drugs like clonazepam, eszopiclone, temazepam, zaleplon, and zolpidem can help you relax and sleep better. However, due to their addictive nature, these drugs are usually reserved for patients with severe symptoms.
4. Opioids
Opioids, such as ramadol (Ultram, ConZip), codeine, oxycodone (Oxycontin, Roxicodone, others), and hydrocodone (Hysingla ER), can also be used to relieve symptoms of RLS. But considering the risk of addiction, they are usually not prescribed unless the case is severe and other medications have not been effective.
Out of the listed choices, the FDA has sanctioned only four medications for Restless Legs Syndrome treatment:This includes ropinirole (Requip), gabapentin enacarbil (Horizant), rotigotine (Neupro), pramipexole (Mirapex). Nevertheless, it is strongly advised that you consult an expert doctor before contemplating any medication.

Lifestyle Changes for Restless Legs Syndrome

Medications alone cannot cure restless legs syndrome; thus, certain lifestyle changes must be adapted to help alleviate symptoms and manage this condition.

Maintaining a consistent sleep schedule

Getting at least seven hours of quality sleep per night can help alleviate fatigue, especially for those with a condition like RLS. It's important to create a comfortable sleep environment and establish a regular waking time to minimize sleep disruption, which can worsen symptoms.

Cutting down on caffeine

Cutting down on caffeine is also recommended. Caffeine can trigger Restless Legs Syndrome symptoms and disrupt sleep by keeping the brain alert and focused, making it harder for individuals with a sleep disorder to fall asleep.

Practicing regular exercise

Regular exercise, particularly moderate activities such as cycling, walking, and leg stretching exercises, can significantly improve symptoms and reduce the urge to move the legs.

Relaxation techniques

Stress worsens symptoms, so relaxation techniques such as yoga and meditation might help. Besides, light exercises, warm baths, massages, and warm or cool packs can also relax muscles and reduce the intensity of symptoms and uncomfortable sensations.

Restless legs syndrome in children

If you think only adults can feel the tingling and pulling sensations in their legs associated with restless leg syndrome (RLS), think again. Children, too, can experience the same. The only problem is that they may be having a difficult time expressing how they feel. Often, they'll refer to it as a "creepy crawly" sensation.
RLS can interfere with the child's sleep quality, which can affect every aspect of life. A child with this condition may often seem inattentive, irritable, or fussy and may be labeled disruptive or hyperactive.
To diagnose restless legs syndrome in children up to 12 years, the adult criteria (as we mentioned before) must be met. The child must also be capable of describing the sensations they're experiencing in their legs using their own words.
If the child fails to express how they feel, two of the following conditions must be true:

• There's a clinical sleep disturbance that's deemed age-appropriate.
• A close biological family member, like a sibling or parent, has a history of RLS.
• A sleep study confirms a periodic limb movement index of five or more movements per hour of sleep.

In addition to diagnosis, it's important to address any possible dietary deficiencies a child may have. Children with restless legs syndrome should steer clear of caffeine and also develop good sleep habits.

Restless legs syndrome in pregnant women

During pregnancy, many women experience symptoms of restless leg syndrome (RLS) for the very first time. This usually happens in the last trimester, and studies suggest that pregnant women are at two or three times higher risk of developing RLS.
Unfortunately, it's not entirely clear why this happens. However, some theories suggest that nutritional deficits, hormonal shifts, or nerve compression could be the reason.
Well, pregnancy-related symptoms like leg cramps and sleeping difficulties can be hard to distinguish from RLS. But if you're pregnant and experiencing symptoms similar to that of restless legs syndrome, it's important to have a discussion with your healthcare provider.

When to see a doctor?

If you experience symptoms of restless legs syndrome on a regular basis, and they are causing discomfort or interfering with your sleep and daytime activities, you should consult a doctor. Some people may have mild symptoms that do not require medical intervention, but others may need to see a specialist for management of their symptoms. It is also important to rule out any underlying medical conditions that may be contributing to your RLS.

Conclusion

Restless leg syndrome can be a debilitating condition that steals individuals' ability to relax and get the sleep they need to lead a productive life. The frustrating sensations caused by the condition can cause everything from minor discomfort to severe disruptions of daily routines. The good news is that once correctly diagnosed, treatments for restless legs syndrome are relatively straightforward and usually provide relief.
Adopting a healthier lifestyle, limiting caffeine intake, regular physical exercise, and practicing good sleep hygiene habits are usually the first steps in managing RLS symptoms. With the right combination of lifestyle adjustments alongside medication, people can manage restless legs syndrome and its symptoms effectively.

FAQs

1. Is Willis Ekbom disease and restless legs syndrome the same?
Yes, Willis-Ekbom Disease and Restless Legs Syndrome (RLS) refer to the same condition and are characterized by an irresistible urge to move the legs, often accompanied by unpleasant sensations. This can lead to difficulty falling asleep or staying asleep, resulting in sleep deprivation and daytime fatigue. The condition can also affect other parts of the body, such as the arms, torso, and head.
2. Who gets restless legs syndrome?
RLS can affect anyone at any age, although it is more commonly observed in middle-aged and elderly individuals, as well as in women, more frequently than in men. RLS may also be hereditary, with up to 50% of people with the condition having a family history of RLS. Certain medical conditions, such as iron deficiency anemia, kidney failure, and diabetes, as well as the use of certain medications, can also increase the risk of developing RLS.
3. Does restless legs syndrome affect your sleep?
RLS can significantly impact your sleep quality, making it difficult to fall asleep or stay asleep throughout the night. The sensations associated with RLS can vary from person to person but are often described as tingling, crawling, or aching in the legs. These symptoms occur mainly at night, making it difficult to relax and drift off to sleep. In addition to this, the urge to move the legs can be so strong that it wakes a person up from sleep, further disrupting their rest.
4. Is restless legs syndrome life-threatening?
RLS is not a life-threatening condition. However, it can significantly impact a person's quality of life, especially if left untreated.
5. Does sleep medicine help with restless legs syndrome?
While sleep medicine can be effective in managing RLS symptoms, it is not a cure for the condition. It is important to work with a healthcare professional to develop a comprehensive treatment plan that addresses all aspects of RLS, including sleep disturbance, to improve your overall health and well-being.
6. What is PLMD or periodic limb movements disorder?
PLMD is a sleep disorder that is associated with restless legs syndrome and involves involuntary movements of the limbs during sleep. These movements are repetitive and occur in a cyclic pattern, typically every 20-40 seconds.
7. What makes restless legs syndrome symptoms worse?
RLS symptoms can be worsened by lack of sleep, high levels of stress, certain medications and substances, and changes in routine or activity level.
Establishing a regular sleep routine, managing stress through relaxation techniques, exercise, or therapy, avoiding medications that aggravate RLS symptoms, limiting or avoiding substances like caffeine, alcohol, and nicotine, and taking frequent breaks to move around can all help alleviate symptoms.
8. Is RLS a neurological or sleep disorder?
Restless legs syndrome is a neurological disorder that's closely linked to a dysfunctional dopamine system. At the same time, RLS is also considered to be a sleep disorder. The common symptoms of RLS are heightened during periods of rest, and they can seriously disrupt a person's sleep. Many people with this condition report that they find it difficult to fall asleep or stay asleep due to the urge to move their legs.
9. Is restless legs syndrome hereditary?
RLS has been found to have a genetic component, which means it can be inherited from parents to children. Studies have shown that there is a higher prevalence of RLS among family members of affected individuals compared to the general population.
10. What are the home remedies for restless legs syndrome?
Given below are a few home remedies for those struggling with RLS:

• Regular exercise
• Applying warm or cool packs to your legs
• Stretching before bedtime, especially the muscles in your legs
• A gentle massage of the legs before bedtime
• Taking an Epsom salt bath before bedtime

It is important to note that while these home remedies may help reduce RLS symptoms, they may not work for everyone.
11. What prescription medications are available for restless legs syndrome?
There are different types of prescription medications available for treating RLS. This includes dopamine agonists, iron supplements, anticonvulsants, and opioids.
12. What are the side effects of the medications used to treat restless legs syndrome?
Like all medications, the drugs used to treat restless legs syndrome (RLS) can cause side effects, some of which can be serious. Nausea, dizziness, drowsiness, hallucinations, and daytime sleepiness are some of the most frequent side effects of Dopamine agonists.
Using Iron supplements in high doses can lead to side effects such as constipation, nausea, vomiting, and abdominal pain. In rare cases, iron accumulation in the body can cause significant health issues.
Anticonvulsants used to treat RLS may cause dizziness, drowsiness, and blurred vision, while less common side effects include memory problems, depression, and suicidal thoughts. Opioids can cause constipation, nausea, and drowsiness, and they are highly addictive and hazardous when used improperly.
If you have any symptoms or worries regarding medication side effects, it is important to discuss them with a healthcare provider.
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5. The Importance Of Bed Frames: Why Support and Stability Matter

Hey guys, I just wanted to log my experience with Linx Magnetic Augmentation Surgery in hopes I can help some people who are thinking about getting it done, so check back for regular updates if thats you! I had the procedure done... today! I am writing this as I'm laying in my bed recovering so what better time to start walking through my experience. Just to give a little background as to how I ended up needing this surgery (skip to the bottom if you just want to read about my GERD symptoms post Linx device over time)
I'm 27 years old and started dealing with acid reflux around the age of 15. Until about the age of 23 I was able to manage symptoms for the most part with over the counter meds, primarily nexium. Around 23 things started to barrel downward pretty quickly. I started experiencing really bad chest pain a few times a week after eating and drinking, and started spitting up a lot despite still taking meds to manage symptoms. I went to a gasto doctor and was eventually prescribed a PPI which I took for the past 4 years and was able to manage my symptoms completely for about 2 years. However, 2 years ago the heartburn, regurgitation, and chest pains started rearing their ugly head again. I went to get an endoscopy and they found a hiatal hernia that was considered small and nothing to worry about. I was told the hernia would heal on its own. They also dilated my esophagus and told me that would help. Unfortunately this did not help my symptoms and they progressively got much worse over time. Fastforward a year and some change, I was at a point where I was on a max dosage of lansoprazole which at this point was doing absolutely nothing for my symptoms. I decided to see a new gastro in hopes they would help me and told them about my symptoms and hernia that was found a year ago. The new gastro took everything I said very seriously and referred me to a general surgeon. This was about 8 months ago. From there, I was told I would need to take several tests before a surgical option could be considered. The surgeon made me aware of the typical stomach wrap method of repair but also mentioned the Linx device magnetic augmentation repair. I was told if I had a normal functioning esophagus but did show signs of bad acid reflux that I could get this procedure done. Over the course of 5 months I had 4 tests done: a barium swallow, a ph bravo test, and a test where they stick a tube up your nose and make you swallow water (sorry I forgot the name of this one). The barium swallow and tube test were to determine if I had a normal functioning esophagus (required for linx) which thankfully I did. The ph bravo test was to determine if acid reflux was the cause of the symptoms (it was). The surgeon reached out to inform me Linx was the proper procedure but told me insurance typically tries to deny it and it would likely need to be appealed. This is typically a several month process. To my delight my insurance approved it on the first go, and so my surgery was scheduled for August 29th.
So I had my surgery today. They repaired the "small" hernia which had now grown to a medium sized one. It unfortunately did not heal itself since it wad first spotted during that endoscopy. They then put in the Linx device. The entire thing took about an hour and a half and I was out cold the entire time. No recollection of it. When I woke up the first thing I noticed was the 4 incisions. Very small and overall pretty painless. They put some sort of liquid on them that hardened to protect from infection. They said it would dissolve on its own in about a week. Next thing I noticed was the chest pain. Interestingly enough the pain really only happened when inhaling. When exhaling and swallowing I felt completely fine. Last thing I noticed was the excruciating shoulder pain. This can happen because of the anesthesia and typically goes away in about 2 days but in my case its been extremely uncomfortable.
I left the hospital after about an hour of waking up and took a 4 hour nap. They do have me on pain meds (oxycodone) but the pain felt about the same before and after taking it at the hospital. Again after waking up, the shoulder pain has been the crappiest part so far. Ive also had some full body itches which is also related to the anesthesia but taking some Benadryl has helped with that so far.
8/29
As far as eating and drinking go, I've had immediate relief. I've drank some vitamin water and ate pudding today with no issues and no acid has come up at all. It feels surreal. I did make the mistake of trying to eat a donut. They advised me to just eat what I can tolerate, so I decided to give a donut a try. It seemed fine for a few bites but then I started feeling some serious dysphagia in my chest and nearly puked. I drank some water and eventually got it down but I won't be doing that again. Going to stick to pudding and yogurt today and try again tomorrow. Shoulder pain and chest pain are about a 7/10, very bearable but also very uncomfortable. Still a bit itchy from the anesthesia but the benadryl definitely helped. Will update this post soon!
8/29 Pt 2
Upsate for today. So during the surgery they administered some sorting of numbing agent to my chest and upper abdomen that was said to last about 12 to 24 hours. I can feel this starting to wear off and the chest pain is becoming a lot more apparent. It is still worst when inhaling but there is a lingering pain as well now. Id rank the overall chest pain at about a 7. Its very unpleasant. As for the shoulder and neck pain, the aching pain is still there but has subsided some. I would rate the shoulder pain at a 6 and the neck pain at about a 4 now. Every hour ive been eating a couple of rittz crackers to exercise the device (this helps the scar tissue to heal properly around it). As for the good, still no signs of acid anywhere. Been burping more than normal but was told this is normal and just part of the healing. Still taking 5mg of oxycodone every 6 hours to help manage the pain and it definitely does help but the latter of the 6 hours becomes pretty tough. Hoping to get a full nights sleep tonight!
8/30
Today the numbing agent they put in my chest and upper abdomen has completely worn off. This has caused swallowing to be pretty dang painful and I can really feel when food gets stuck now. I've been eating pudding and soup with just noodles and it's been going down just fine but it is uncomfortable. I also eat a cracker once every hour to excercise the device which is also quite unpleasant but extremely important. Probably TMI but the gas they put in my stomach has been causing a lot of bloating pain today. Luckily a lot of the gas has started passing. Experienced some 15 second releases of air that had no smell whatsoever. Just surgical gas exiting and its very relieving when it does. I still have shoulder and neck pain from excess gas which the nurse told me today can take up to 5 days to completely go away. Overall changes since yesterday is more pain swallowing (no numbing now), less pain in shoulders, but more bloating pain in stomach (slowly going away as air releases).
If you guys have any questions regarding the procedure or anything related just let me know!

Hi! Just diagnosed? Think you might have it? Have general questions about vaginismus? Here is a handy guide I have made from my own experiences and research.
TABLE OF CONTENTS (CTRL/CMMD + F to search!)

• WHAT IS IT?
• HOW TO GET DIAGNOSED?
• WHY DID THIS HAPPEN TO ME?
• WHAT ROLE DOES THE HYMEN PLAY IN VAGINISMUS? / IS THIS HAPPENING CAUSE I AM A VIRGIN?
• HOW COMMON IS THIS?
• IS IT POSSIBLE TO CURE VAGINISMUS?
• HOW DO I TREAT THIS?
• HOW LONG DOES IT TAKE TO HEAL FROM VAGINISMUS?
• HOW DO I TALK TO MY PARTNER ABOUT THIS? / WHAT OTHER OPTIONS ARE THERE FOR INTIMACY BESIDES PIV?
• WILL GIVING BIRTH CURE VAGINISMUS? / WILL I BE ABLE TO ONE DAY HAVE CHILDREN IF I HAVE THIS?
• OTHER TERMS RELATED TO VAGINISMUS

WHAT IS IT?

Vaginismus is a pelvic floor dysfunction disorder. Your pelvic floor muscles are tight and unconsciously clenching and closing the opening to your vagina both when attempting penetration and in your daily life. The pelvic floor muscles also connect to all other groups of muscles in your lower body — back, hips, and legs. Vaginismus not only can cause an inability to have penetrative sex, it can also cause urine & fecal incontinence as well as a lack of mobility overtime.
Common symptoms are penetration being outright impossible, or if any penetration is possible, is exceedingly painful in a burning, stabbing, or pinching way. Penetration may feel like "a wall is being hit" in that a partner either can't get inside or can only get a very small way. Penetration may cause tearing or bleeding. Vaginismus can also cause penetrative sensations like the urgency to pee/poop. Many people initially discover an issue before their first sexual encounter when they have difficulty inserting tampons/cups, fingers, or during an internal gynecological exam.
The primary subreddit for advice on this condition is /vaginismus. The primary subreddit for partners and friends of those with vaginismus is /vaginismusfriends.

HOW TO GET DIAGNOSED?

(If you've already been diagnosed you can skip this section)
In order to be diagnosed you need to visit a Gynecologist (also referred to as an OB-GYN), which is a doctor that specializes in female anatomy. You can find a gyno (within the US) here.
I always recommend a physical/internal examination to those who believe they can handle it. There are other issues physically that can present as vaginismus (such as a septate hymen or bacterial vaginosis) that a doctor needs to evaluate in order to rule them out. A gyno, understanding that you are worried you have this condition and hearing your experience, should always go at your pace and explain the process of the exam with you and stop if you ask them to/cry out in pain at any point.
However, if you do not think you can handle a physical exam for one reason or another, you do NOT need to have one in order to get a diagnosis. You can simply describe your symptoms and what you're experiencing and they should be able to diagnose on that alone. I know this because this is how my gyno diagnosed me. Do not let any gyno pressure you into doing an internal exam if you don't believe you are up for it. If they state they can't diagnose without an internal exam, state you will be looking for a second opinion, get up, and leave — and then find that second opinion in a different gyno.
If you do opt for an internal exam, they typically will do a "q-tip" test where they insert a wet q-tip and see how tight you are around that. Depending on your level of discomfort, they then may use their finger as another measure if the q-tip is okay. Some gynos also like to refer for a transvaginal ultrasound to test if you don't have any other condition internally that could be causing the pain. For reference, this is how big a transvaginal ultrasound wand is compared to a size 7 Intimate Rose dilator. If you do not believe you can handle this, please tell your doctor or ultrasound tech immediately so they can cancel or modify the procedure.
If you are scheduled for a pap smear, please note that the guidelines from the American College of Obstetricians and Gynecologists (who set the professional rules for gynos) state that anyone under 21 does not need a pap smear and that anyone above 21 only needs them every 3 years, and over 30 every 5. Either way, if your doctor is pressuring you to get a pap smear and you know you cannot tolerate any level of penetration, again, refuse and find another provider if possible. Your gyno should be understanding to your condition and wait until you can tolerate a pediatric speculum (a small version of the device they insert to open your vagina to get to your cervix to test) to do a pap smear.
Many health plans in the US require an official diagnosis and referral to a pelvic floor physical therapist from a gyno in order to cover treatment. If you doctor dismisses your concerns in any way or refuses to send a referral, please seek out another opinion. Good OB-GYNs do exist! While vaginismus training is standard part of OB-GYN specialization, there are still providers who do not take this condition seriously or misunderstand it. Pelvic Floor PTs are often the most knowledgable and sensitive to vaginismus, so if you feel you'd rather skip seeing a gyno and move straight to a physical therapist, that's also an option — just be sure you will still be covered under your health insurance if you choose to do this.
So, if you found a sensitive, thoughtful, and respectful provider and now have an official diagnosis, they should refer you to a pelvic floor physical therapist (see below: treatment options). Your gyno does not treat the vaginismus themselves (other than prescribing medications that help during treatment).

WHY DID THIS HAPPEN TO ME?

Lots of reasons for vaginismus to develop, or none at all, really. You can develop vaginismus before the first time you attempt penetration (primary) or later on in life after having pain-free penetration previously (secondary). Here are some common reasons:

• Physical trauma to the region or one of the above listed muscle groups (such as scoliosis, MS, significant tearing/scarring, etc)
• IBS/D, Crohn's, or any other chronic digestive issue
• Emotional/mental trauma that causes significant anxiety or other nervousness
• Medical trauma
• Sexual assault
• Childbirth
• Female genital mutilation ("female circumcision")
• Religious trauma/purity culture

This is not an all-encompassing list, and there are definitely other reasons as to why this can happen. It is also possible to just simply develop in a way that causes vaginismus.
It is important to remember that this is not a character flaw or moral failing. This is a medical condition, not something we choose to have. It is certainly, for many people suffering from it, a protective mechanism our bodies develop in order to deal with trauma. No one wants to be in pain or feel like they are different from others and cannot experience something people enjoy.

WHAT ROLE DOES THE HYMEN PLAY IN VAGINISMUS? / IS THIS HAPPENING CAUSE I AM A VIRGIN?

First and foremost, virginity is a social construct. Hymens being “intact” or not to denote someone who is and isn’t a virgin is largely a myth. The only reason your hymen would be giving you trouble is if you had an abnormality with it, such as a microperforate hymen. If you've had a gynecological exam, your doctor would have seen something like this though, because it’s very obvious if it’s abnormal and you would have been referred for surgery. Additionally, if you’ve had a successful period, you likely have no abnormality as well. You can always get a second opinion on that but it is rare, and even people in the vaginismus sub who’ve had their hymen removed, it is a mixed bag —for some it cures the issue, others not so much.
Hymens, in people without abnormalities, have little to no bearing on penetrative ability. Hymens are like a small, thin rubber band that stretches out of the way very easily as long as you’re lubricated and relaxed —even during the first time. When it does come time to lose your virginity, do lots of foreplay and use lots of lube! You likely won’t even be able to really see the hymen if you take a mirror down there and look, because it’s so thin and small. It is another myth that losing your virginity has to hurt. We’re not born with a “freshness seal” like our society wants us all to believe because that would be absurd. Here is a cute little video debunking this and explaining more.
What determines your penetrative ability more than anything is your muscle tone and control, which is why vaginismus is a muscular disorder, not a hymenal one. Even as a virgin, you can work on this condition and train your pelvic floor muscles to become accustomed to the sensation of penetration.

HOW COMMON IS THIS?

Pelvic floor dysfunction disorders of all types, among both sets of sexes, is extremely common. Some statistics for you:

• On vaginismus alone, 1 in 5 women or 20% of the population experience vaginismus. This statistic is also likely lower considering the shame and stigma around reporting this condition, as well as many medical professionals still not being trained on the signs/symptoms/severity of vaginismus.
• 3 in 4 (75%) people with female anatomy experience pain during sex at some point during their lives.
• General PF disorders among people with female anatomy is between 25-35% of the population (slightly above 1 in 5).
• General PF disorders among people with male anatomy 52% experience erectile dysfunction, as well as up to 16% with pelvic floor dysfunction and chronic pelvic pain syndrome. 1 in 5 AMAB have experienced pain during sex, or 20% of the population. These statistics, again, are likely higher than estimated due to stigma of reporting.

IS IT POSSIBLE TO CURE VAGINISMUS?

YES, absolutely! There are countless stories of people overcoming this condition to be able to have pain-free penetration and pelvic floors.

HOW DO I TREAT THIS?

There are a variety of treatment options, many of which are used in conjunction with one another. One thing I want to stress is that trying to "push through the pain" and just keep going when penetrating is not a treatment option and will result in tearing and possible infection, as well as making the vaginismus worse and training your nervous system that penetration = pain. Do not attempt or continue to attempt PIV sex before going through a treatment method, preferably dilation.
Here is a non-exhaustive list of proven treatment methods:
Pelvic floor physical therapy (PFPT) — PFPT, just based on my own experience as well as the experience of others, PT is by far the most effective method for the majority of people in healing this disorder. Since this is a muscular disorder, working with a physical therapist (even for just a few sessions) can help you get a personalized treatment plan to fully understand what specific muscles both internally and externally are giving you the most trouble. Additionally, PTs can help you use the dilators with them to watch your form and get you the most effective treatment techniques. Many people also bring their partners to PT so they can work with their partner during treatment.
PTs should always go at YOUR pace when working together. While eventually a PFPT will need to do an internal exam to assess you, it should only be when you are ready for it. Pelvic floor PTs are specifically trained on the sensitivity of this condition and should never pressure you into doing an internal exam or any exercises you do not want to do. Like with a gynecologist, you are free to refuse any service and see a different provider at ANY time. You can find a PFPT (within the US) here.
For those struggling to afford a PT, here are a few tips: 1) Ask if the office has a sliding scale program to adjust the rate based on income 2) See if your state has expanded Medicaid that can cover the gap in coverage for a reproductive service, which some consider PFPT to be 3) Look at medical schools that have lower rates for people training to be PTs (residents). The treatment will still be overseen by someone with a medical degree (an attending).
There are also online resources from PFPTs, notably The Pelvic Dance Floor on TikTok. She is very responsive to questions and has a wealth of resources.
If you truly cannot get to a PFPT, that is okay! You can treat at home with the rest of the methods here, many of which would be recommended by a PFPT.
Dilator therapy — This is often used directly with PFPT. Dilating is very important so that you can start at the penetrative size level that causes little to no discomfort and work your way up to penis size. You do not want to try to push through the pain of penetration, ever. Dilation works because you slowly retrain your nervous system to understand penetration can be pain-free.
Dilators come in many different sizes, shapes, and materials. Dilators typically start in size from smaller than a pinky finger and go all the way up to average penis size. Typically, there are tapered (in which the top of the dilator starts out small and gradually gets larger) and non-tapered. Starting out with a tapered dilator is easier for some people. The two most common materials for dilators are hard plastic and silicone. YMMV here, though silicone tends to feel more "real" to the experience of a penis than plastic will. For myself, I transitioned from plastic to silicone and silicone was more comfortable inside me.
The Gold Standard for dilators are the Intimate Rose set. This set is by far the most popular because it is formulated by a PFPT, however, it is expensive. There are sets for $50 on Amazon you can also use if you feel Intimate Rose is not affordable for you. If you're working with a PFPT, they may have a discount code they can give you for IR. The most important thing to look for in a dilator is that you feel it is comfortable, maneuverable (as in you can hold it and use it with ease), and has sizing that is gradual enough not to cause a lot of discomfort.
Ideally, a PFPT will tell you how often you should be dilating for the severity of your condition, but for most people, 2-3x a week works fine. You do not want to over-dilate and end up introducing too much stimulation into the region.
Some people choose to dilate when aroused, other people choose not to. There is no better method, and some people do a combination of each. Trying dilation aroused and unaroused will help you figure out what works best for you and your treatment.
During dilation, always think of your vaginal opening as a clock — 12 on top near your urethra, 6 at the bottom near your anus. The tip of the dilator should always be pointed downwards towards 6 o'clock. Pointing the dilator towards 12 will cause you to stimulate your urethra and make you have an urgency to pee. If you're having tightness at the opening, just sit and hold the dilator there and inch it in ever so slightly, using your breathing techniques and downtraining (see below), every time the pain subsides. Once you have the dilator a comfortable inch or two inside, you can slowly move it from 3-9 o'clock in a U shape, finding tender spots and VERY LIGHTLY pressing on them until they release. You can also just make the U-motion back and forth to desensitize yourself to the sensation. Some people, when they become more comfortable, also go in and out at their own comfortable pace like a penis would.
Any time you feel uncomfortable or like you're hitting a wall, try moving your legs and tilting your hips towards yourself as this creates more room in the pelvic floor. You can also buy a wedge pillow to help with this. You do not have to dilate only laying on your back with your feet planted beside you either— some people dilate standing up, crouching, on the floor with their legs resting on a chaicouch, in the doggy position (though doggy is always the most difficult and should be attempted when you're pain-free in other positions).
Dilation should take 10-15 minutes each session, depending on what you can bear. The pain level during dilation should never go beyond a 4 on a 10 scale. You want to be, as my PT put it, "at the edge of discomfort" until you are pain-free. There is no set amount of time it should take to move from one dilator size to another — just work with a dilator until you are pain free. This could be anywhere from weeks to just a day or two. Anytime you feel more than a 4 on the pain scale from a dilator, stop and move back down.
Always use a good amount lube when dilating, many people recommend Slippery Stuff. Always clean your dilators/pelvic wand with soap and water after each use.
Pelvic wand — This is often used alongside dilators. Pelvic wands are more precise in targeting and massaging trigger points in the pelvic floor muscles out. Intimate Rose has a very affordable pelvic wand on their website, the vibrating and heated ones are even better if you can afford those. Pelvic wands are skinnier than dilators and typically will fit someone who has worked their way through the first four in the Intimate Rose set, for a size comparison.
External exercises/stretching — As stated, this condition often connects intimately with the back, leg, and hip muscles. Many people find they are weak or tight in those muscles as well as the pelvic floor and only make significant progress (like myself) when they begin working externally as well as internally. Flower Empowered on Youtube is great for finding exercises that can be done at home. Many people also take up pilates or yoga.
One exercise you should NEVER attempt unless under the supervision of a PT is kegels. Kegels are clenching and unclenching your vagina, by definition. However, the clenching is the problem as most people suffering from vaginismus are already tight and have too much muscle tone in the area. The pelvic floor muscles need to be relaxed before attempting to strengthen them, or else you will end up making yourself tighter.
Sex therapy — Our emotional state has a great deal of impact upon recovery. The pelvic floor region is adept at holding in anxieties and emotional trauma. This disorder can be very emotional and open up a lot of wounds, especially if you have any history of trauma related to your sexual anatomy. When we are healing, we are reestablishing that relationship with ourselves, and for many, it can reveal things that are painful or that we've ignored for a long time. Additionally, many couples often find that they have difficulty giving up the sort of media/porn narrative of sex when this condition arises in a relationship. I always recommend seeing a therapist, but in particular a sex therapist, during treatment to unpack those feelings. You can find a sex therapist (even outside the US!) here.
If you are a victim of any sort of sexual assault or abuse (even if you never reported to police), please reach out to RAINN (Rape, Abuse, and Incest National Network) for support. They may be able to connect you with low cost or free therapy.
Downtraining — Downtraining, or training your mind to imagine visually softening and relaxing the muscles, is an important part in learning how to consciously relax your muscles during the day as well as during penetration. Typically before starting treatment, many people have no idea how much they are clenching. Establishing a mind-body connection is necessary to unclench. Download Insight Timer on your phone and listen to this track (5 minutes) for how to begin.
Masturbation — Having a positive relationship with your body and sex starts with you. Experimenting with self pleasure is so, so important because it establishes a positive connection in your mind with the vagina/vulva region. If you have never masturbated, taking a mirror and first examining your genitalia can be helpful. From there, lightly touching and seeing what sensations you feel and where are a great first step. Clitoral stimulation, or just lightly rubbing on the clit, is a wonderful place to start if you've never masturbated before. The Bad Girls Bible has a good guide here as well.
Medication — There are a variety of medication options available to make treatment easier. Muscle relaxers, valium suppositories, and anti-anxiety and depression medications are all commonly used. Estrogen cream is also extremely helpful in making the vaginal and labial tissues more moist and flexible for dilation. These require an ongoing prescription from your gynecologist.
Some people also report that being on birth control has caused or exacerbated their vaginismus. Please consult a doctor about this before getting off of birth control, especially if you live in a state without access to abortion or have endometriosis.
Some people find that marijuana (THC) or CBD alone helped ease their symptoms. Please make sure to try THC and CBD on their own in a safe environment to see how you handle these drugs before incorporating them into your dilation routine or PIV!
Taking street drugs, such as MDMA/ecstasy, ketamine, xanax, oxycodone/heroin, etc. have not shown any proven benefit for treating vaginismus and carry the risk of being laced with unwanted or harmful substances such as fentanyl. Please, please do not risk your life trying to cure vaginismus by getting harmful something off the street.
Sitz bath — Sitz bath is a small bath that you place in your toilet to relax and soothe your pelvic muscles. It is commonly used post-partum. Get a sitz bath, fill it with lukewarm water, and sit in it for 5 minutes a day and just relax. Dilating after this will be much easier as well.
Breathing techniques — Breathing is an important part of our self regulation and helps us concentrate on relaxation as well as moving our pelvic floor muscles for penetration. Many people use box breathing while they are dilating or during sex. The technique I used was the 4-7-8 breathing technique, which will help regulate your nervous system to reestablish the body/mind connection.
Botox — Botox is a paralytic toxin that is used in a variety of cosmetic and medical applications to stop muscles from contracting. Botox has been proven to help vaginismus recovery by injecting into the pelvic floor muscles that are contracting and causing the vaginal opening to close. The reason why it is so far down on this list is because it is often prohibitively expensive for most people ($2,000 - $6,000 per treatment), not covered by insurance, hard to find providers who are trained to do it, and it wears off after about 3 months so you do need to get another injection and keep dilating/doing the other treatment options on this list for a lasting effect. On the vaginismus subreddit, there are stories of people who have botox done that you can find by searching.
Reading/listening literature — Reading books on the topics of sex, gender, and vaginismus specifically can help reframe your perspective on this issue.
Vaginismus specific literature: -Sex Without Pain by Heather Jeffcoat -When Sex Seems Impossible: Stories of Vaginismus by Peter Pacik
Sexual intercourse specific literature: -The Great Sex Rescue by Sheila Wray Gregoire -Come As You Are by Emily Nagoski -Bodies: Sex Hurts (NPR Episode) by Allison Behringer
Gendesex perspective reframing: -The Second Sex by Simone de Beavouir -all about love by bell hooks
Body trauma: -The Body Keeps the Score by Bessel van der Kolk
Relationship advice: -Why Does He Do That? by Lundy Bancroft -She Comes First by Ian Kerner (a lot of sexual intercourse advice, but is a book mainly geared towards helping partners pleasure their female partners)
If you search in the vaginismus subreddit, you can find other literature recommendations.
Online courses — I put this last as I am always wary of non-medical professionals or people on the internet selling unregulated courses to cure this disorder. If you have tried everything else and truly feel you have no alternative, then you can look into these courses. However, I always recommend thoroughly researching them and trying to find other real people who can give unbiased testimonials on their experience. There are many people simply looking to prey on the vulnerable and desperate. Some selling these courses also have a religious motive that they are not upfront in disclosing. If you see someone on the vaginismus or any women's health subreddit trying to sell a course to cure vaginismus, be very skeptical and ask a lot questions up front. If something seems too good to be to true, it usually is. Most of the time, your money is better spent on going to a pelvic floor physical therapist or sex therapist.

HOW LONG DOES IT TAKE TO HEAL FROM VAGINISMUS?

The amount of time it will take you to heal from vaginismus varies vastly. For some people, it is years, for others, it is a few months. If you are working with a PT or you have botox, that can shorten the time. If you have emotional trauma or don't have access to dilators, that can lengthen the time. The most important thing is that you don't rush the healing process. You can heal, but you need to give yourself time, grace, and compassion.

HOW DO I TALK TO MY PARTNER ABOUT THIS? / WHAT OTHER OPTIONS ARE THERE FOR INTIMACY BESIDES PIV?

Here is a good starting script for how to tell a partner you have vaginismus:
"I care a lot about you and I wanted to share something that’s important. I have vaginismus. It is a condition where my pelvic floor muscles involuntarily clench and close the opening to my vagina, which makes it painful for me to have sex. It has nothing to do with you at all, it is just something I am medically struggling with. Right now I’m working on healing this with [insert therapies] because being pain free for my own well-being and having physical intimacy with you are important goals to me. I am hoping at some point we could try penetrative sex. I hope we can also be physically intimate in other ways though before then because I think it’ll help our relationship and my healing journey. You mean a lot to me and I’m so glad I have a partner like you who makes me feel safe to share this with.“
Any partner that makes you feel bad about this disorder in any way, pressures you to have PIV before you are ready, or ignores your sexual boundaries/needs does not deserve you and is not worth it. You do not "owe" a partner anything, especially sexually. Consent is at the core of every single positive sexual experience, and the goal of sex is for two people to come together to physically experience one another — not for one to dominate the other to get what they want. Our culture unfortunately pushes a narrative that men are owed PIV sex by women and that it is the goal of all sex to end up doing PIV, which is just not healthy or even true. Humans have been having sex in many ways outside of PIV since the beginning of time. While those of us who are suffering are usually doing a lot of work to try and fix this, it is incumbent on partners to also come to terms with having a partner who has this disorder and accepting that PIV sex is not an option. If that is something they cannot handle, then at that point there is a sexual incompatibility. Being single is better than being with someone who will only exacerbate your symptoms and make you feel worse about having vaginismus. Having a supportive partner while you're healing makes a world of difference in not only curing, but continuing to stay cured.
In terms of intimacy, you should always try to maintain all levels of physical intimacy (besides penetrative, obviously) with your partner while treating. So everything from just hugging and cuddling to sexual contact like oral and digital acts are encouraged. Thigh and tit jobs are also another way to simulate PIV without actual penetration.
If you are single, I want to emphasize that supportive, patient, and compassionate partners do exist! You are absolutely worthy of love even with vaginismus and there is someone out there for you. There is nothing wrong with you and do not settle for anything less.
One last final point here: you should always be healing for you and no one else! While having penetrative sex may be a goal in your recovery, your overall goal should be your own connection & relief within your body. If you are not ready to have PIV sex, or you simply don't like it, that's okay! It's your body and you set the rules. You can still find a partner and be loved. The whole recovery journey should make you feel empowered and in control of your body.

WILL GIVING BIRTH CURE VAGINISMUS? / WILL I BE ABLE TO ONE DAY HAVE CHILDREN IF I HAVE THIS?

A very common misconception is that giving birth will cure vaginismus or improve it because the muscles will be "forced" to "relax" in order to have the child. The reality is that this is not at all medically or scientifically accurate, and while there are people who it has happened to, it is exceedingly rare that vaginismus improves after giving birth. Giving birth is more likely to result with your vaginismus worsening. You should always attempt to treat and heal vaginismus before trying to have children. My PT told me herself she sees a variety of clients who developed vaginismus only after having children, or people who had a mild case beforehand and ending up increasing in severity post-partum.
Having children after being diagnosed with vaginismus is 100% possible, though. Obviously if you treat vaginismus and cure it, you will be able to reduce the risks of pregnancy to the same as someone without vaginismus. However, there are some people who are not ever able to fully overcome vaginismus and still want to have children and use the "turkey baster" method of impregnation. Labor and delivery itself is typically not impeded by vaginismus as there is a big difference between something going into the vaginal canal and something trying to come out. This page here talks more about vaginismus and pregnancy/childbirth and the risks associated with untreated vaginsimus while trying to have children.

OTHER TERMS RELATED TO VAGINISMUS

• Dyspareunia — pain during sex
• Endometriosis — medical condition where the lining of the uterus also grows on the outside of the uterus and causes extreme period pain, ovarian cysts, infertility, and other symptoms
• Hypertonic pelvic floor — pelvic floor muscles that are extremely tight at all times
• PIV — penetration/penis in vagina
• Vulvodynia — medical condition where you have pain in the vulva/labia

Please feel free to PM me if you have any questions, want advice, or just someone to vent to! I hope this guide is helpful for everyone who needs it.

Adding to my post from yesterday, here is my Bisalp experience thus far!
8/4 Day of the surgery I was told I could drink clear liquids (which somehow included black coffee?) up to 2 hours before my procedure so I took advantage of that and enjoyed some coffee and water right before leaving the house.
My husband and I arrived at the surgical center and I checked in. I expected it would be a minute before I was brought back so I went to pee and while I was gone, I missed them coming to get me! Oops. Also, try to hold your pee because they’re going to want you to pee in a cup for your final pregnancy test ever pretty soon after arrival!
We get up to the pre-op area and the care team introduced themselves, asked me to tell them my name, DOB, and what procedure I was there to do (note: every single person you meet will ask you to repeat this 20 times. Have patience). They asked a few more questions like what meds I was taking and when my last dose had been of each, when was the last time I ate, drank etc. Then they had me pee in the cup and get changed into a gown.
Next, they tried to place the cannula for the IV. I have tiny, stupid veins so this was easily the toughest part of the day for me lol. Two nurses tried and were not successful so ultimately anesthesia brought back a special ultrasound machine and was able to get it! This was not a surprise to me as anytime I need blood drawn, it’s a production. I always warn the nurses and apologize for my uncooperative veins. My poor husband who hates needles was a bit shook by all this but mercifully did not faint or anything 😂.
I spoke with anesthesia and they asked me all the same questions as well as if I had any history of trouble under anesthesia in the past. I told them no but once I did throw up on the ride home afterwards so he said he’d give me extra nausea medicine to make sure that didn’t happen again. He then went over some extra precautions they were taking with me specifically because I recently had Covid and that could effect the way your airway responds to anesthesia. He basically said they watch all their patients carefully the whole time but would be a bit extra with me for any signs that my airway was spasming and if anything looked funky they had medicine on hand to counteract it. He asked if I felt comfortable proceeding and I agreed.
Then my surgeon came back to talk to me, went over everything we were doing and asked if I or my husband had any last minute questions. My only questions were regarding what he would do if he found endometriosis when he was in there. He reiterated he would excise it conservatively and carefully and note anything he saw that he thought might need to be addressed in the future. He asked if I wanted them to place an IUD while I was under for period/endo control and I declined. I really want to know what it’s like to finally be off hormones for the first time in 20 years. He agreed and said the magic words “your body, your choice! You ready to roll?” I said yes, he gave me a fist bump and scurried off.
After a few more minutes with the pre-op team, I kissed my husband goodbye and was being rolled back to the OR. I was super chill, so up to this point they hadn’t given me any anxiety meds or anything. But as we were approaching the operating room, one of the anesthesiologists said “we are gonna get the party started now. You might feel like you just had a few margaritas in a minute. Don’t worry.” And she was right! It did feel like the nice beginning tipsy feeling where you know what’s going on but you’re happy and floppy. 🍹🙃
We get into the OR and everyone says hello again. I remember scooting from the wheely bed to the OR bed. Then someone put a mask on my face and said “this is just oxygen. Take some deep breaths” so I did. Next thing I know it, I’m awake in post-op!
I vaguely remember someone saying “you’re doing great! We are going to take you to another room now.” She took something off my legs (I think the pressure cuffs), then I drifted back to sleep. Next thing I know I’m waking up in the PACU.
In the PACU I was greeted by another nurse who said I did well and that the doctor had called my husband to let him know all was well. She brought me some Graham crackers and ice water which was the most magical thing since I hadn’t eaten in like 20 hours! She asked how my pain was and I said “it feels like bad cramps. Like 4/10.” So she gave me an oxycodone. She let me rest a little longer before asking me if I felt like I could get up and try to pee. I did and I will warn you: take it easy sitting up! Quite the rush to the head and the first time you realize your abs are angry.
I shuffled to the bathroom and was able to pee. It stung like a MF because of the irritation from the catheter and some blood came out from my vagina (just like it usually does when you have a medium/heavy flow day and you get up in the morning for your first pee). My belly button incision started to bleed a bit from the strain of standing up for the first time and I got a little light headed and nauseous from this experience. The nurse let me lay back down and gave me more anti nausea meds that fixed me right up. She put a larger bandaid over the belly button incision and it caused no more trouble after that.
Before long, I was on my way out the door! She let me walk to the car with her because sitting down in the wheelchair was more irritating for me than walking. I was grateful for that. I eased into the car, put a small pillow between my belly and the seatbelt and we were on our way home!
The first night home went fine. Husband had to help me sit up from lying down to sitting up the first few times bc I was afraid to use my abs but later into the evening and thus far today I’ve been able to do it on my own! The first two pees at home still stung from the catheter but is totally normal now. Only minimal spotting. Advil/Tylenol every 6 hours is doing the trick. I took one oxy before bed last night to ensure I slept well but that’s the only time I’ve needed it so far. Throat only mildly scratchy from the breathing tube. Cough drops are helping!
Day 2 8/5 Today for the most part I’ve been taking it easy but doing light cleaning around the house to keep mobile. I’m going to take a shower soon so hopefully will feel less grody soon. Can’t wait to get the dried blood and orange cleaning solution off me!
They DID find and excise a few spots of endo which may explain my chronic pelvic pain. Looking forward to asking my doc about that on Monday.
Thank you for reading this essay! I will update this thread as the days go on with progress for those interested. Thank you again for all the support! I adore this community. 💕
UPDATE
Day 3 8/6 Woke up feeling really good today. Slept almost through the night without waking up to pee. Abs feel less sore today and I can engage them more. Haven’t needed oxy since the first night. Only Advil/Tylenol. Minimal spotting. And I can sort of lay on my side now without discomfort! Still needed a nap mid day 😴

I've (22f) got severe chronic neuropathic pain and mobility issues. As horrible as it is, ive gotten used to it cause ive experienced severe pain all my life. Ive had 13 surgeries in my life, and they started when i was born basically. Ive been on every different medication under the sun, and I've tried different treatments. Unfortunately the pain will never go away, and ill probably be heavily medicated for the rest of my life. I accept that.
But what i really struggle to accept is this constant exhaustion that i experience. I NEVER have energy. Doesnt matter how much or how little i sleep. I feel the same. The first thought i have in the morning is "oh **** i just want to go back to bed". Most of my thoughts in the day revolve around looking forward to sleeping and finding "excuses" to nap. I say "excuses" cause i shouldnt really need one but i still have to justify it to myself and others. I take 5mg oxycodone four times a day, 10mg oxycodone extended release in the morning and a 15mg at night (I also do other things to help with the pain other than medication). I know this is probably contributing heavily to my fatigue and tiredness but its the only medication thats ever worked for me, and ive tried them all. ive gotten blood tests in the past to check if theres anything wrong, and they just said i was slightly low on vitamin D (which everyone in this country is). Part of me feels like the exhaustion debilitates me almost as much as my pain does. It makes me not able to do so much. If I had more energy i could do so much more with my day, and my mental health would be so much better. It makes me struggle with such basic tasks, just as much as my disability does. Take now for example, my pain isnt too bad at the moment cause i havent done much today. Can i shower? Can i wash my dishes? No. Im so damn tired. Living like this feels pointless and it makes me feel so depressed. Im struggling with university and everyday tasks due to my disability and my energy levels, how will i ever be able to get a job, and do all the things ill need to do as i grow older? Im in tears writing this post because this is destroying me. And no one understands. Everyone just says "oh yeah im so tired too" while they are able to do what they need to do.
My question is, has anyone else with chronic pain and people who take strong pain killers experienced this? Is there anything that helps? Does anyone have any suggestions? Im so sorry for the long post, i think i just needed a rant. Theres so much more i want to say but i dont want to overcrowd the post. Thank you for reading, if youve gotten this far. Sending you all so much love.

M20 124lbs 5’6 non smoker
Update 5: the last ER gave me one percocet, one tylenol, and a shot of toradol and sent me on my way. Now I’m at the same ER I saw the PA at except my favorite doctor is here and actually treating me. We tried external lidocaine shots, then 2 percocets and a Valium, then one more Valium, then lidocaine internal, and now we’re tried a 2mg shot of dilaudid along with my regular dose of baclofen and gabapentin. This last one is the pain nuke so it should work after trying every other option. But he got me in with a very good neurologist that I should be able to see today or tomorrow, referred me to an ENT to check everything else out that way, gave me a three day supply of 7.5mg percocets to go home with (apparently I’m not flagged by the DEA and everyone just lied cause they didn’t want to give me narcotics). He also gave me a three day supply of Ativan because my usual pharmacy is out of stock and my psychiatrist is on vacation, so they couldn’t transfer it without her approval and she comes back Monday so it should get me through until then. All around ER visit that was worth it. I have enough pain meds to get me through until I see my doctor and am seeing the right people for more opinions on my condition.
Update 4: the PA I saw said go to a different hospital that may be able to give me the nerve block. Sadly they said they couldn’t so that’s not an option, but they gave me 2 percocets at 4:15am (so 30 minutes ago as I’m typing this) for the time being. I’m waiting until 7am for the doctors to get here to discuss a prescription for the week until Friday when I see my pcp who can continue pain management until I can get in with a pain management specialist. Also gonna ask my pcp for a referral to a more local pain clinic that’s not an hour away so hopefully I can get to one of those sooner. I’m also gonna call a different and more local neurologist that the best ER doctor I had highly recommended for a second opinion. He does pain management too so that also may be a good option for that, and he may be able to do the nerve block. Things seem to be going in the right direction. Hoping the percocet works soon, thankfully if it fails I’m still here for a while so they can evaluate and reassess what they can do for pain.
Update 3: and the pain is starting to come back on the left side now…. so I’m gonna call them now and see what the next step is
Update 2: went to the ER again, saw the same PA I had last night and this time she suggested mixed lidocaine shots. At 7pm she gave me the maximum dose on each side in the back of my mouth and so far its cut the left side’s pain by about 40% and the right side by about 20%. So not great but it’s something. It still hurts a lot though so I’m probably going to call them back and ask what else can be done, I can’t have more of the lidocaine cause it could be lethal and it’s not exactly a long-term solution either. Gonna see what they can do.
Update: Neurologist just diagnosed trigeminal neuralgia.
Tylenol, Advil, naproxen, toradol, none of it works. I have a fractured maxilla and I’ve been having severe nerve pain in my face since I got my wisdom teeth out on June 1st. The surgery went horribly wrong and my insurance is suing them for the costs of all the specialists and ER visits. I have been to the ER probably 6 times now with two hospital admissions for pain management. All of this is well documented and I’ve saved every bit of paperwork I’ve received.
I started 300mg 3/day gabapentin and 25mg 1/day amitriptyline almost two weeks ago, and a few days ago started 5mg 3/day baclofen (switched from cyclobenzaprine). I’ve slowly increased the dose of the gaba to 600mg 3/day since the ER doc 5 days ago told me I should be upping the dose by now. He gave me 600mg there so I adjusted according to that and today took 600mg three times for the first time.
I’ve been on percocet for the better part of a month. I only have taken it once or twice a day, the pain gets really bad at night so I usually take one then but if it’s bad during the day it might be two total. Lately 5mg hasn’t been cutting it which indicates I’ve built a tolerance, and the hospital I’ve been going to seems to have thought so too as 5 days ago they gave me 7.5mg of oxycodone and 10 more percocets that I made last until today when I went back to the ER.
Today they gave me 60mg of toradol, which they informed me was not the usual at all and only for “life or death cases”, which I just interpreted as rarely when they can’t give opiates. I understand they didn’t want to give a prescription which is reasonable as this is a chronic issue that should be handled by a regular physician (even though I couldn’t get in with my PCP until the end of this week which I booked two weeks ago). But they could have at least given me something there right? Is the DEA really that strict that you can’t even give pain medication as a single dose in-house if it’s a chronic problem that brings you to the ER often?
I mean 3 hours later and I’m still in horrific pain, I don’t think any ER is going to give me adequate treatment anymore so I’ve taken 900mg gabapentin and 1mg Ativan to self medicate. I’m down to maybe a 7.5/10 pain after that and hoping it’ll help me sleep sometime soon, though the pain is keeping me up still. I’m just tired of feeling like I’m being tasered and stabbed at the same time on both sides of my face.
I have a zoom consult with a neurologist tomorrow who can hopefully give me something, but he’s affiliated with the same hospital (the second one I was admitted to) that gave me nothing effective and let me writhe and scream in pain for two days straight while loading me up on toradol that didn’t work. The doctor on my case also drug tested me twice for no reason as I had just come directly from the first hospital with all the paperwork in hand, and she still refused narcotics after clean results. It was super traumatic and I have memory loss from that stay because the pain was so bad. They also did not give me the gabapentin that the first hospital gave me which just delayed treatment even more. And they were supposed to be the experts that the first hospital recommended. All they did was torture me and say it could be muscle or nerve related or both, same as the first one said. I just wasn’t treated appropriately so I don’t have a lot of hope that someone affiliated with that hospital will treat me much better.
So what am I supposed to do? Is the ER going to turn me away from now on? Do I just suffer now? I’m so stressed and upset now which is not helping with the pain. Is there really nobody who is willing to help me? Are everyone’s hands really legally tied so that they can’t provide adequate pain relief? I really don’t want to believe this is the state of our medical care

I've been of opioid meds for years, from Vicodin 6-7 years ago to currently prescribed 30mg extended release morphine sulfate twice a day and two oxycodone w/acetaminophen 325/10 for breakthrough pain. It's for a combination of several surgeries for a hip messed up in an accident plus spine issues, stenosis, bone spurs, arthritis, a bursa, etc. etc.. My doctor has recommended Miralax as the only thing I should take if I have bouts of constipation. I've been pretty lucky, rarely had constipation and Miralax worked like a charm for the occasional times I was constipated.
But about a month ago I started having constant constipation issues, pushing hard to force out small round pellets or elongated rounded solid stools about the size/shape of baby carrots. Then I would sometimes have a normal bowel movement shortly afterward. I haven't changed what I eat, although my appetite has declined, same food, just less. Oatmeal with fruit every morning and protein like chicken, fish or lean ground beef and salad or vegs for dinner. The Miralax doesn't help, and at times I won't use it because for no reason like changing what I eat, I start passing gas and then have to go about once an hour with explosive diarrhea. The diarrhea has been going on for a few days now. The only thing that's changed is there is no oxycodone/acetaminophen available at local pharmacies, so the doctor has changed the breakthrough pain med to 10mg oxycodone without acetaminophen. It seems like if that would cause any change it might be constipating since the new pills are rapid release, but still the same dosage of the opioid medication.
Has anyone else had to make this medication change and have similar issues? Or have alternated between constipation and diarrhea, and if so, find out the cause or a successful way to deal with it? Coincidentally, my GP has me scheduled for an abdominal aortic aneurism MRI screen this week. She said it's just a routine screen for people my age. She ordered this test before I was having any problem. Does anyone know if that test will also pick up any intestinal issue, or just checking the abdominal aorta?