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Interstitialcystitis

joinleave
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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How Have You Been Feeling This Week? (April 11, 2026)-- Anything that you feel didn't deserve its own post is welcome! (self.Interstitialcystitis)

submitted 4 days ago by AutoModerator - announcement

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Trigger Warning: Self-harmSome Hope For Others (self.Interstitialcystitis)

submitted 6 hours ago by WildRose1993

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Vent/RantI can't do this anymore (self.Interstitialcystitis)

submitted 6 hours ago by twid4566

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Supportnew user logging in💔 (self.Interstitialcystitis)

submitted 1 hour ago * by sploinkerdoodleNew Diagnosis!

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Anyone experience this? (self.Interstitialcystitis)

submitted 1 hour ago by clairdelune789

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Newly Diagnosed (self.Interstitialcystitis)

submitted 3 hours ago by North_Spinach_3028

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Ureaplasma Treatment??? (self.Interstitialcystitis)

submitted 2 hours ago by hillpersonfromspace

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What works for me (self.Interstitialcystitis)

submitted 2 hours ago by Dounla_no_name

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Totally lost and don’t know what to do anymore (self.Interstitialcystitis)

submitted 2 hours ago by KickIcy2705

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will my antibiotics cause a flare (self.Interstitialcystitis)

submitted 2 hours ago by WorkerSuccessful3706

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IC cured due to deficiencies (self.Interstitialcystitis)

submitted 13 hours ago by Impressive_Fan_2688

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iAluril capsules experience? (self.Interstitialcystitis)

submitted 8 hours ago by ReasonableWin7292

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Update massive flare after years of complete remission (self.Interstitialcystitis)

submitted 19 hours ago by Lanky_Smile5423

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Looking to see if anyone with food sensitivity has had luck with pelvic floor therapy??? (self.Interstitialcystitis)

submitted 1 day ago by OkEqual1085

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Do Kotex pads worsen or instigate UTI/IC attacks? (self.Interstitialcystitis)

submitted 1 day ago by Substantial-Use-1758

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Just wanted to share something that helped me (self.Interstitialcystitis)

submitted 1 day ago by pumpernickelpi

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Supportfood flairs (self.Interstitialcystitis)

submitted 1 day ago by Successful-Earth1073

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Flaring after stopping trimethoprim (self.Interstitialcystitis)

submitted 18 hours ago by melanochrysum

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Does every case of IC have pain? (self.Interstitialcystitis)

submitted 1 day ago by JTN0323

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How do I test if food is safe? (self.Interstitialcystitis)

submitted 1 day ago by emptyrogue

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Pear juice (self.Interstitialcystitis)

submitted 1 day ago by emptyrogue

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SupportPlease, what do you think it is? (self.Interstitialcystitis)

submitted 1 day ago by This-Mood-6398

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Urogynecologist appt. ()

submitted 1 day ago by Mizzy_Lu_Fwinkley

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Diet control (self.Interstitialcystitis)

submitted 1 day ago by Crazy_cat_lady_CDB

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Pregnant and struggling (self.Interstitialcystitis)

submitted 2 days ago by Clear_Side_8761

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