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A MyFibroTeam Member asked a question 💭
Charlevoix, MI

Over the last month, I've started with a new problem with painful urination without infection or blood. I know this can be a part of this disorder but would love to hear from the REAL experts, patients with EDS! Help

May 13, 2019
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Answer Summary

Members responded to a question about bladder problems in Ehlers-Danlos Syndrome by sharing their own difficult experiences with Interstitial... Read more

Members responded to a question about bladder problems in Ehlers-Danlos Syndrome by sharing their own difficult experiences with Interstitial Cystitis, a condition that causes UTI-like pain without infection and often coexists with EDS and fibromyalgia. Several members described debilitating symptoms including painful bladder spasms, burning sensations, frequent urination (sometimes four times an hour), and lower abdominal pain, with one member finding significant relief through an interstim implant after years of suffering. A recurring theme was the importance of seeing a urologist for proper testing, as IC can take years to diagnose, and the shared frustration of dealing with yet another chronic condition on top of an already exhausting health journey.

A MyFibroTeam Member

I am so sorry to hear this. I suffer from Interstitial Cystitis and actually I had that before I even got all my fibro issues. It causes UTI pain without any infections. I was diagnosed by a specialist (urologist) who did a scope of my bladder through the urethra. Very painful, but he was able to show the lesions this caused in my bladder and why I was having these symptoms. I am only mentioning this as a possibility of what is happening with you. Maybe see if you can go to a urologist for testing. It took me three years to find out that was my issue. Very painful and it also can hurt your lower abdomen. I ended up getting an interstim implant which has helped me a ton. I cannot live without it. I was going to the bathroom over 4 times an hour and 5 times a night for only a drop of pee because of how badly my bladder hurt. It also burns at times when I pee and I have irritations. So sorry, I do hope you figure it out.

May 13, 2019
A MyFibroTeam Member

I have been dealing with UTI’s for the past year. I have beenon so many scripts it was making me very nervous. My Family doctor tells me not to be worried as I need the antibiotics. I have had so many tests done. I like you have had a difficult year with so many health issues and was looking forward to enjoying this summer. I was just recently diagnosed as having FM. I wish you good health and a beautiful summer.

Hugs

May 13, 2019
A MyFibroTeam Member

My mom has IC. She is unable to release urine due to painful bladder spasms and it is so painful. I'm having a different issue with a painful yanking sensation at the end of urination. Sometime I can't stand up straight because it is so painful. I'm seeing the Dr AGAIN tomorrow for this. I'm so over all this crap. I want to enjoy summer!!! I missed the last 2 from surgery and infection. Keep me posted with progress and diagnosis.

May 13, 2019
A MyFibroTeam Member

The urologist that I go to thinks I have interistial cistitus. If I keep having painful urination I'll have to be tested for it.

May 13, 2019
A MyFibroTeam Member

Hello... I have Ehlers Danlos Type 3 and also have bladder issues. Have you heard of Interstitial Cystitis? I was actually diagnosed with this prior to Fibromyalgia, Chronic Fatigue Syndrome, POTS, and Ehlers Danlos. It might be worth looking into. Hope this may be helpful.

May 14, 2019

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