Diprofos uses

I have been reading the threads/ posts and comments on this page and it seems that more women than I expected are dealing with this awful condition. My mother has been suffering since 2016 and we have tried almost everything, or at least everything that was available to her in Romania (where she lives). Her quality of life has diminished. She was a very active woman, fairly health with no family history of illness except arthritis, and now she can barely walk 100 meters without experiencing pain. She can’t sit down; she has to lie down. The only comfortable sitting position is on the toilet. That’s when the pain goes away when she relieves herself. I am posting a thread with her condition, maybe someone has found a solution/ knows of a doctor that can help, etc. The post is long, but I feel like background/historical info are important.
My mother will be 66 years old in couple of weeks. In April 2016 she had a perineum repair surgery at the advice of her doctor in Romania. Her complaints at that time were that she needed to use the bathroom way too often and was afraid that she will become incontinent. She was told that since she had two vaginal births, and during her first child she had to have an episiotomy, her pelvic muscles will eventually weaken enough where she will become incontinent. She is not, even after all this time and all the diagnostics and surgeries she has had done. The 2016 surgery was healing well, she felt ok for about six months. In December 2016 she started experiencing a very sharp pain in the pelvic area, from the rectal to the pubic area; the pain was felt on the right side (on the vulva, pubic bone, urethra and the clitoral area). Around this time, she started experiencing blood in her stool. Through 2017 the pain become more acute; a urologist in Romania diagnosed her with interstitial cystitis, but he didn’t recommend treatment. In the meantime, the rectal bleeding happened more often, so her doctor referred her to a surgeon, who diagnosed her with hemorrhoids and recommended a hemorrhoid removal surgery. This was completed in December 2017. Once she returned home from the hospital, her situation worsen. Couple of week later she was rushed to emergency because she started bleeding from the rectal area. She was treated at the local hospital, and for about three months she was feeling better. However, the sharp pain in her pelvic area was constant, the need to go to the bathroom was increasing and the pain was worse if she held her urine. During this time, she was also diagnosed with rectocele and cystocele. In 2018 she visited me in Orlando FL and I took her to see an urologist and was confirmed with Interstitial Cystitis with Hunner Lesions. The urologist here took a sample from her bladder for a biopsy to eliminate potential cancer. The recommended medication for interstitial cystitis was Elmiron (Pentosan polysulfate), which was very expensive (she was tourist and didn't have US health insurance - Walgreens pharmacy quoted $1,000 for a month supply); later I've also learned that there was a class action lawsuit in the U.S. for causing macular degeneration. Also, this medication is not available in Romania.
She was also recommended Cystiq (a natural supplement) which she took, but the pain didn’t go away. As well as instillations with Cystistat (sodium hyaluronate) once a week for eight weeks. She did the instillation treatment at least four times since 2018. Because the pain was so severe, she received a shot of Diprofos Injection in 2018 and again in 2019 (according to my mom the shot was done in the vaginal wall, or in her uterus). After the first shot, the sharp electric like pain in the pelvic area went away for about six months, but eventually it came back. After the second shot the pain subsided for only three or four months and it came back. In January 2022, because the bleeding in her stool started happening more often, she went back to the surgeon who performed the initial hemorrhoid removal surgery. The bleeding still happens, even after the surgery.
Running out of options, I asked her to see a neurologist. After doing tons of research and reading everything I could find on interstitial cystitis, checking out testimonials of other people suffering from this condition, I came across articles about the pudendal neuralgia. The sharp pain that she describes, shooting from the back of her rectal area through the clitoral area, localized mostly on one side, were the symptoms listed in the article. She went to see a neurologist, who prescribed 150mg Lyrica. She started taking it and although the sharp electric pain was less intense, the pain and burning sensation during urination intensified. It also made her dizzy and started experiencing lower back pain. So, she stopped taking Lyrica after about three weeks. So the sharp electric like pain is back and more intense.
I decided to find doctors somewhere in Europe, so I took her to a clinic in Vienna (WP Klinik). Each doctor that has seen her there couldn't explain why her pain was so intense (they were also confused why the doctors in Romania recommended her initial surgery as well as the hemorrhoid removal surgery). They did a urine analysis and found bacteria in her urine (Proteus Mirabilis and Enterococcus) and recommended an antibiotic treatment with Cipro and prescribed Lyrica (but only 25mg, which she tolerated really well). Sher returned to Romania and felt better for about two weeks. Over the holidays the pain return. She had two urine analysis done in Romania but the bacteria is non-detectable. I think that the lab standards are different from country to country, because it is unlikely she doesn't have another bacterial infection. I don't know what else we can do to help her. Everything I see online for IC and pelvic pain I bought. From tens units, to sitting pillows, to Innovo pants.
Has anyone with IC done treatment with the TECAR method? Or red light therapy? Has anyone been to see Dr. Eckenberg in Bethleem Pennsylvania? I've seen him on an episode of Body Bizarre, where a patient experiencing electric like shocks on her pelvic area seemed to have found some relief.
It breaks my heart reading all these posts and seeing how many women are going through this terrible illness. And it makes me mad when I speak with doctors and they treat IC as a "crazy condition" (my mother was told that it's just in her head). Or, "oh, it's just an UTI"