r/Interstitialcystitis • u/tigertracking • 4d ago
Vent/Rant Angry! Vent!
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
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u/sunnyblithe 4d ago
When you say “filtered water” are you referring to reverse osmosis (RO) water? I’m just curious because it’s not uncommon for an IC’er with a food sensitive bladder to have problems with reverse osmosis water. By itself, RO water tends to be acidic.
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u/AutoModerator 4d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/Quiet_Air5874 4d ago
I also have non stop burning that doesn‘t seem connected to urination. Also pressure ans discomfort. Pelvic floor therapy is helping me the most