My sister, mother, and I are all EDS Hypermobility type and in our teens my sister and I had tons and tons of terrible UTIs. My mother had them often, but not as badly. Eventually our family doctor decided to send my little sis to a specialist (she had far more than I). They said we have Interstitial Cystitis, which is inflammation of the bladder wall and a leaky bladder. We found that our symptoms are totally gone as long as we avoid certain foods/drinks. I personally have no issues with foods, but I can not drink even 1/2 a glass of a dark soda and can not tolerate moderate amounts of clear soda without a UTI set of symptoms. I can drink teas, but I do have to be careful of even those. Juices will sometimes bring it on, but I have to consume quite a bit. For the most part I only drink water so I can go years now without a flare up.
The leaky bladder part makes me think EDS, but the inflammation part has me thinking about mast cells. Anyway, thought I would share it because I know that those symptoms are common, just wondering if it’s actually IC rather than UTIs. Granted, we did typically have some amount of bacteria in our urine, but that often was far too often for my doc to believe it was just a UTI.