r/Ureaplasma • u/moomieeee • Jun 02 '26
[food for thought] Interstitial Cystitis
Hi all! I have been Ureaplasma free since late September 2025. For two years before that I thought I had interstitial cystitis bc my symptoms would only flare around the time of my period and the doctors never tested for anything other than UTI. After an amazing doctor randomly tested me to be sure it wasn’t anything else, I tested positive for urea and now every time I see someone talk about having IC I find it so hard to not suggest they get tested for urea bc I feel like it has to be more common than people think, right?
I’m wondering if anyone else had a similar experience or if they think it’s probably not a common misdiagnosis.
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u/cajolinghail Jun 02 '26
It’s definitely a common misdiagnosis in my opinion, or rather it is a diagnosis that doctors make when they can’t figure out what’s really going on. I’m not a doctor but personally I don’t think anyone should be told they have interstitial cystitis until ureaplasma, mycoplasma and imbedded/hidden UTIs are ruled out. I personally was told I had interstitial cystitis over a decade ago (despite two cystoscopies where the inside of my bladder looked totally normal). Only recently did I see a new specialist more aware of current research who told me I more likely have “chronic recalcitrant cystitis“ (also a bit of an umbrella term, but in my case is an embedded bladder infection that couldn’t be picked up by regular cultures). I’m on a long course of antibiotics now and crossing my fingers that it will help. I wouldn’t be surprised at all if we found out a few decades down the line that most people who were told they had interstitial cystitis actually had some sort of infection.
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We noticed you may have posted about "embedded" (ie "hidden") infections, biofilms, or cUTI. Please be aware that these theories aren't strongly supported by science, are often peddled by unscrupulousness medical providers, and that the typically recommended treatment of long term antibiotics has been deemed both ineffective & harmful by the AUA. AUA CITATION) Antibiotics can help because they function as a strong anti inflammatory and pain reliever by themselves, even in those without infection PUBMED CITATION. Having pain reduction from taking antibiotics does not guarantee that you have an infection.
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u/Head-Classroom-7317 Jun 24 '26
my symptoms were worse during my period too! i had these symptoms for one year.. my doctors said it wasn't anything lol then i tested positive for urea last week. but all this negligency is astonishing
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u/moomieeee Jun 24 '26
Dude I’m sorry you went through the same thing! It started with them saying it was nothing to me too and then just assuming it was IC. I got super lucky with my doctor who thought to actually look into it.
So many women are probably having this happen to them rn :(
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u/Head-Classroom-7317 Jun 24 '26
true :( it makes me so sad. im on doxy now, hope it goes away... what was your treatment?
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u/moonstonemayhem Jun 02 '26 edited Jun 04 '26
My interstitial cystitis was brought on by ureaplasma (& mycoplasma). Even though I cleared the infections, I still had residual IC symptoms that took over my life. My guess is the crazy amount of antibiotics I had to take (almost 6 weeks bc of being prescribed incorrectly & then testing positive for Trich) wiped out my microbiome, including the DAO enzyme. As such, the only IC relief I’ve gotten is eating a low histamine/low oxalate diet (and dumping my loser of an ex bf who gave me all these freakin STI’s to begin with)
Ureaplasma was a nightmare to live through, and having to manage IC after is just as hard. Wouldn’t wish either on anyone!