Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyFibroTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Fibromyalgia And IC

A MyFibroTeam Member asked a question 💭
London, UK

I'm interested to know if anyone else here has issues with Interstitial Cystitis, since I've been told by my GP and urologist that it often occurs in people who have Fibro. I have had on-off issues since my early 20s and it would be interesting to know how others manage it.

For me it mainly manifests as OAB and bladder spasms, but I also have some nerve damage that my bladder won't actually empty fully by itself. I self-catheterise 3 times a day to prevent leaks and infections. I've sometimes… read more

July 25, 2018
 · 
Reactions

Answer Summary

Members opened up about living with both fibromyalgia and interstitial cystitis, a condition affecting about 60% of people with fibro that can... Read more

Members opened up about living with both fibromyalgia and interstitial cystitis, a condition affecting about 60% of people with fibro that can cause severe bladder pain, urgency, and incomplete emptying. Several members shared practical strategies including self-catheterization to prevent leaks and infections, D-Mannose supplements, pure cranberry juice, bladder instillations with anti-inflammatory and numbing solutions, and connecting with support organizations like Bladder Health UK and the Interstitial Cystitis Association. A recurring theme was the unpredictable nature of flare-ups and the extra challenge of managing catheterization during UTIs, met with deep empathy from others who understood the often invisible pain and the importance of finding doctors who truly understand IC.

A MyFibroTeam Member

Have a look at using organic apple cider vinegar. It helps with all sorts of imbalances.
My chronic UTIs have reduced with regular daily use.

July 25, 2018
A MyFibroTeam Member

I also suffer from IC my gynourologist fills my bladder with a solution of antiflamitory, a numbing solution and something else I can't remember ( fibro fog) and I hold it for an hr in my bladder. But it helps with the many times to the restroom. Do u have problems going to? I can be in the restroom forever and ik my bladder is full and can't go. Or pass a little. This is another problem added to the list of health problems. I hope u get some relief. I'm still trying to get it to. God bless u

July 27, 2018
A MyFibroTeam Member

BTW, @A MyFibroTeam Member, how do you cope with the pain when it's bad? Thinking about this again because of a UTI which is giving me a bit of a bladder pain flare-up today. Sometimes I find it hard to deal with the unpreditability - I'll have weeks where it's totally fine and then a few days when it's bad. I do find that it's agony to cath when I have a UTI, but I know I have to do it or I won't empty properly and it just gets worse.

Sorry for the essay!

July 26, 2018
A MyFibroTeam Member

Thanks for the info about the groups - I think I've had leaflets about Bladder Health UK from Urology but I've never followed it up. I was lucky that my GP did agree to send me for further investigations and all the doctors I've seen at Urology are fab. I have heard that some eventually have bladder removal and I hope I'm never going to get to that point, I have been pretty lucky so far I think. The biggest prob for me is that I do have to catheterise to avoid leaks and UTIs, which does sometimes make the pain a lot worse.

July 25, 2018
A MyFibroTeam Member

PS Wanted to say that your Dr and urologist sound up to speed as most Dr's and many urologists know nothing about IC and have not even heard of it x

July 25, 2018

Related content

View All

Do People Having IBS Along With Fibromyalgia Also Have Gynecology Issues?

A MyFibroTeam Member asked a question 💭
Norton, OH

Bed Ridden For Weeks With IC

A MyFibroTeam Member asked a question 💭
Battlefield, MO

Has Anyone Else Had Problems Urinating?

A MyFibroTeam Member asked a question 💭
Guthrie, OK

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In