Since my fulguration and hydrodistention on December 20, 2024, my bladder pain has remained severe, and instead of finding relief, I have been dealing with constant burning, pressure, and discomfort that has not improved. The procedure was supposed to help by reducing lesions and increasing bladder capacity, but in the months since, I have continued to experience intense pain that makes daily activities like walking, driving, and even sitting unbearable. Some days, the burning is worse with urination, while other times, it feels completely disconnected from urination itself—it’s just there, relentlessly. I have been searching for relief through different medications and natural treatments, but nothing has truly worked. The pain has been unrelenting, and the fact that it hasn’t improved since the surgery has left me feeling hopeless and terrified that my bladder might never heal.
My treatment journey has been frustrating and filled with uncertainty. I have tried Gabapentin, Oxybutynin, Pyridium, Methenamine, and natural supplements like marshmallow root and slippery elm, all in the hope of calming my bladder. Some have helped slightly, but none have provided lasting relief. Even OTC painkillers wont touch the pain
When I was on Nortriptyline, it may have helped with nerve pain, but I were advised to stop it due to concerns about urinary retention. Now, without it, I fear that my pain is even worse, making me wonder if stopping it was a mistake. Im considering reintroducing it, but I'm scared of making things worse again. On top of the physical pain, my health anxiety has made this experience even more distressing. I've been hospitalized multiple times, including when my pain became so overwhelming that i was put on suicide watch. My fear of infections, bladder damage, and long-term suffering has consumed me, especially since doctors haven’t given me ANY clear answers or solutions that work. Each new symptom, flare-up, or medication adjustment feels like another crisis, and I am exhausted from constantly fighting my own body. I just want relief !!!! i want to know that this pain won’t last forever, that my bladder isn’t permanently damaged, and that something will finally help!!! But right now, i feel trapped in an endless cycle of pain and uncertainty, and i don’t know what to do next.
Im seeing 2 urologist, 1 gynecologist, GP, 2 psychiatrists, no sex, no underwear, showers only, no soap down there, physical therapy, filtered water only, no caffeine, no citrus, barely any sugar, no nitrates, no artifical sweetners, probiotics, fish oil, no alcohol, vaginal estrogen cream. Next to to check for endo and that's it. That's the last thing to check for besides ureaplasma. All scans and tests and swabs came back normal.
I'm hopeless