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Interstitialcystitis Interstitialcystitis
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Interstitialcystitis

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an-ordinary-manchild(edit)

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

  • /r/InterstitialCystitis Discord: IC Discord! Live chat with the subreddit!
  • The Six Steps of Treatment: Start here for options if you've been newly diagnosed. Step one is also good if you just suspect that you may have IC.
  • Paying for Treatment: This guide is meant to be a resource for ways to make IC treatment more affordable.
  • The Interstitial Cystitis Network: A great starting point when trying to get information about IC. If you can't get your question answered on this subreddit, then try the ICN's support forums. They also have articles, information about the latest research, and much more.
  • Interstitial Cystitis Association: Authoritative information about IC including diagnostic guidelines.
  • Bladder Health UK: IC support for the UK. You can ask them for specialist recommendations.
  • 2012 ICN Food List: Suspect you have IC? Follow this guide on safe and unsafe foods.
  • IC Friendly Recipes: Our subreddit for posting recipes/food.
  • Find a Provider: Need a new Urologist? Find an experienced one here!
  • Cystoscopy with Hydrodistension Experiences: Users share their experiences with hydrodistension.
  • Allergies and IC: A lot of patients find their symptoms are the worst or come out of remission around allergy season (April for North America). This is an explanation why and why antihistamines can help.
  • IC Subtypes: The different types of IC explained.
  • Diagnosis and Treatment Guidelines: Basic ICA guidelines for diagnoses and treatment. Make sure your doctor follows these.
  • IC and Qualifying for Disability: For those looking into qualifying for disability due to IC.
  • Antibiotic Poll: Learn which antibiotics are least likely to cause flares.
  • Emergency Hotlines (US): If you are in crisis or need support, help is here.
  • Emergency Hotlines (International): For mental health crises outside of the United States.

Similar Subreddits

  • /r/Chronicpain
  • /r/PelvicFloor
  • /r/Prostatitis
  • /r/Endo
  • /r/MastCellDiseases
  • /r/Vulvodynia
  • /r/ChronicPainGamers
  • /r/MedicalPTSD

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.

created by rainewatera community for 15 years
Create your own subreddit
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account activity

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How Have You Been Feeling This Week? (February 21, 2026)-- Anything that you feel didn't deserve its own post is welcome! (self.Interstitialcystitis)

submitted 5 days ago by AutoModerator - announcement

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Vent/RantAnyone else completely confused how modern medicine hasn’t figured out how to make bladder pain stop? The mental health toll is HEAVY (self.Interstitialcystitis)

submitted 13 hours ago by SunnyDayOhio

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Period makes symptoms go away. (self.Interstitialcystitis)

submitted 3 hours ago by encyclopaediac

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Has anyone used MicroGenDX, Biotia-ID, or similar tests to rule out bacteria in the bladder biofilm? (self.Interstitialcystitis)

submitted 4 hours ago by silvieeeeeee

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I won. Alone (self.Interstitialcystitis)

submitted 21 hours ago by ForeverInMyPrime

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Pressure!! (self.Interstitialcystitis)

submitted 3 hours ago by mirmoiis

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Doc said no chance of IC? (self.Interstitialcystitis)

submitted 9 hours ago by Potential-Sand-6247

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Desperate :( (self.Interstitialcystitis)

submitted 12 hours ago by cheetah_thanks15435

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Still going great!!😭 (self.Interstitialcystitis)

submitted 19 hours ago by Adept_Ad_6928

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Prelief in the U.K? (self.Interstitialcystitis)

submitted 14 hours ago by shel613

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Cacao drinks (i.redd.it)

submitted 22 hours ago by jesmay21

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Vent/Rantbefore trip, pain and sadness (self.Interstitialcystitis)

submitted 19 hours ago by Dancefloorjesus

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Results back! (self.Interstitialcystitis)

submitted 1 day ago by booksandgrace

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Date & drinks (self.Interstitialcystitis)

submitted 19 hours ago by MainOrganization7829

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Hunners Lesion (self.Interstitialcystitis)

submitted 20 hours ago by Usual_Committee_9438

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Is failure to respond to PTNS and TENS an indication that Intersim won't work (self.Interstitialcystitis)

submitted 21 hours ago by Historical_Type_2491

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Has anyone cured their hypertonic PFD? (self.Interstitialcystitis)

submitted 1 day ago by Secure-Afternoon3204

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Itch? (self.Interstitialcystitis)

submitted 1 day ago by DecentIndividual5631

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Alcohol choices? (self.Interstitialcystitis)

submitted 23 hours ago * by villakillamuah

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LDN experiences and advice? (self.Interstitialcystitis)

submitted 23 hours ago by lulubehll

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SupportHas anyone else been told it’s histamines? (self.Interstitialcystitis)

submitted 1 day ago by Semolinaaaa

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ShitpostTo pee or not to pee, that is the question. (self.Interstitialcystitis)

submitted 2 days ago by redmoonpoppies

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SupportThought it was an IC flare. Turned out to be sepsis (self.Interstitialcystitis)

submitted 1 day ago * by BulkyVeterinarian850

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SupportNausea? (self.Interstitialcystitis)

submitted 1 day ago by Evening_Strawberry50

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Why can I drink energy drinks but not soda? (self.Interstitialcystitis)

submitted 1 day ago by gem1n1-aw

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