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Fibromyalgia And IC
A MyFibroTeam Member asked a question 💭

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

posted July 25, 2018
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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.

posted 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

posted 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!

posted 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.

posted 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

posted July 25, 2018

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