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