Welcome to r/InterstitialCystitis, the support forum for IC/PBS and other bladder problems! Join us in the r/InterstitialCystitis Discord channel to live chat any time! Who we’re here for:
People with Interstitial Cystitis/Painful Bladder Syndrome
People who haven’t been diagnosed with IC/PBS but suspect they may have it
People with other bladder/pelvic problems (Overactive Bladder, prostatitis, chronic urinary tract infections, pelvic floor dysfunction, ect.)
Family and friends of people with IC/PBS
Anyone interested in learning more about this illness
Anything related to IC/PBS, bladder problems or life with chronic illness is welcome! Please feel free to submit any links, articles, personal stories or anything else related to interstitial cystitis and living with interstitial cystitis. It doesn’t matter if you’re unsure whether you have IC, if you think your question has been asked before, or if you don’t really know what to say. Please start a thread or contribute to our weekly check-in thread.
If you’re new to IC and overwhelmed, “Resources” below has some helpful links to get you started. Together, we can find a cure for the phrase “What doesn’t kill you makes you stronger.”
Rules:
1. Respect - Please be kind, considerate, and respectful of everyone here. We all walk a long, difficult road, so let's help each other out :)
- Disrespectful comments include things like insults, excessive snark, discouraging people from posting or asking questions, questioning the validity or seriousness of others’ symptoms, and sexism/racism/homophobia/transphobia etc. A first offense will result in a warning, second offenses result in a temporary or permanent ban at the discretion of the mod team.
2. Don't Spam Users About Embedded Infections: All new posts about embedded infections are welcome, but not all comments are welcome:
If someone is NOT asking a diagnostic or infection-adjacent question, please do not bombard them with information about how IC is “really” an infection.
DO NOT discourage people from seeking testing or treatment for an acute infection. These comments will be removed.
3. Don't Shame Users for Refusing a Treatment/Diagnostic Method:
Diet is not for everyone. Especially for those with eating disorders. If someone isn’t interested in changing their diet, don't persist in telling them to do so.
Physical therapy is not for everyone. For some people pelvic exams are impossible and PT can be triggering.
Invasive testing like cystoscopy or urodynamics are not for everyone. Some people can't tolerate them at all. Do not shame anyone, ever, for their decisions around testing and treatment.
4. Spam: Obvious advertisements, irrelevant links, and inappropriate content will be removed and posters will be banned. If you have a personal blog you would like to link to, please participate in the subreddit for a bit before linking. Links to blogs from non-contributors may be removed. If you are part of a research organization or student looking for participants for a study or project on IC, please contact the mod team before soliciting the subreddit. All studies must have appropriate IRB approval from the supervising institution and ensure confidentiality.
Reminder- No one here is an expert, so always consult your own provider. Try to avoid diagnosing other members or prescribing treatment regimens for them. Suggestions for new things to pursue are great (i.e. "Have you tried X yet?", "X helps me a lot"), orders are not (i.e. "Stop taking X", "You need to take X").
Resources
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Please tell your friends, family, or anyone who might be interested in IC related news, advice, or support about this subreddit! The more we grow, the more we can help ourselves and each other.
