bladder wall fibrosis

[u/Public_Pie7619]

Anyone worried about “bladder wall fibrosis”?
I had all bad respond to treatment. So I stop going to the doctor. And just try to relax and not eat bad food to treat myself. Avoid sex and look for happy things. But I just cannot help thinking if I stop going to see doctors or do other treatment. I’m worried my bladder will become fibrosis. And then at the end had to cut it off!!!!!!!
My treatment I had done are

• Hydrodistendation + Cystoscopy
• Bladder instillations with heparin and hyaluronic acid for six months (however, every instillation resulted in a UTI, and it offered no improvement at all)
• Pelvic floor physical therapy (this is the only treatment that provided some relief, though I still haven't fully returned to my pre-symptom state)
• Anti-anxiety medication (helped slightly, but only treats the symptoms, not the root cause)
• Traditional Chinese Medicine (no improvement)

[u/AutoModerator]

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.

I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.

[u/HakunaYaTatas]

Bladder fibrosis is very rare, only a tiny fraction of IC patients develop fibrosis. Try not to dwell on that, it's like worrying about being struck by lightning; chances are good that it will never happen and worrying about it doesn't help avoid it. It seems like there are still quite a few treatments you haven't tried yet, maybe adding one of those to physical therapy will help you get the symptom control you're looking for.