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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.
Great post, Jewels!! Having been there myself (and I had the fortune of meeting a doctor who was semi-retired, but his previous research dove-tailed with much of mine, making our discussions VERY FRUITFUL), I wanted to throw in my two cents. Did you know that M.S. patients deal with this, too? Interesting, huh? When I had a UTI for over a month, while being on two of the strongest antibiotics out there, I assumed it was merely a reflection of our lowered immune systems (also indicated with candida, high viral Ab titers, etc). But then, like you, I wasn’t sure if I was developing interstitial cystitis or if I had a chronic UTI (they can feel the same, early on). I bought some OTC strips that check for UTI’s so that I could tell when/if I had one. I WAS sliding toward IC. YIKES. The treatment trials will cover this. This horrible condition is pure fallout from the rest of the problems we have. Fortunately, I responded IMMEDIATELY (literally within 36 hours) to focused treatment. By all means, stay on Mg and antihistamines, but I think you’ll need something else to fight this, too. At least I did! Generally, there are no mast cells in the bladder (I discussed this with a mast cell specialist), but found a research article showing MICE had mast cells in their bladders if they were low in Mg (and we are all low in Mg intracellularly, right?). I don’t think it is the MAIN cause of the IC, but it sure won’t help! So for now — H1 antagonists, right? Are you on any mast cell stabilizers? Also great. Then let’s get us all on TREATMENT!! Working on it now… big hug, 🙂 Diana
Hmmm. I, too, had major chronic UTIs. My ob-gyn put me on macrodantin / macrobid ( a mild antibiotic taken daily) to control my issues. I also went through a stage of chronic yeast infections. No, not due to the mild daily dosage of macrodantin.
While it is ‘the norm’ that I think I am getting another UTI and/or yeast infection, the well-known symptoms seem to alleviate themselves these days without treatment. They used to rapidly become raging and full blown, labs with white blood cells being too numerous to count. It is possible that, now, the symptoms alleviate due to having massive other issues – layers of issues? All I know is that they don’t become full blown like they used to.
Maybe pressure, urgency of urination, etc is the result of something else altogether these days? Who knows.
I couldn’t help but respond and relate to your mention of chronic issues with UTIs. It was around the same time, for me, that I began having notable GI issues and was diagnosed with IBS. Could’ve been between a time frame of a few years or so. I guess to say ‘same time frame’ at my age is sorta a relative term. At that ‘cool and cute’ age, I wasn’t really into having a ‘bowel problem’ – ugh! By now, those were the ‘good ole days’.
Hi Give My Daughter the Shot, You are still in a cute and cool stage… 🙂 We’ll get rid of the bowel issues. I can hardly wait!!! I have dealt with them to the point of being hospitalized. Good grief. Just last week, I threw away 4 large containers of every IBS/bowel medication ever made. It felt wonderful to be able to do that. You will, too. Don’t go far, OK? 🙂 Diana
I had no idea M.S. patients tend to have IC, but I recently have found that Mast Cell patients tend to as well. Over the counter strips are a terrific idea for this! I was not aware of such a product, but I will be keeping a look out for them the next time I am in a pharmacy. Over the past week I’ve made the mistake of pushing my luck with tea and am paying the price. 😉
Thankfully I have found a new mast cell specialist to look into my case and feel pretty sure that we will eventually be able to confirm mast cell activation syndrome with testing. For now just have an H1 and H2, but I visit with him Mid Jan and will hopefully end up on a mast cell stabilizer. Maybe I can convince my family doctor to write a script for Xanax or another benzo. I can not wait to see what your treatment trails are!!
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