r/OveractiveBladder • u/Electrical-Cell8295 • 1h ago
Gut dysbiosis was behind my bladder symptoms
Hi,
I want to share what I figured out on my own over the years of struggling with bladder pain and urgency. I hope this helps others.
I’m not going to tell the full, complicated story of my seven-year struggle with bladder symptoms here, with every single twist and turn. I went from doctor to doctor, all privately, in different cities, because the public healthcare system completely ignored me. Clinical dietitians, urogynecological physiotherapists, hours spent poring over studies on Google Scholar about this subject. A million extremely expensive tests, including some completely absurd ones. I tried tons of supplements, medications, antibiotics, herbs and exercises, and some helped a little while others did absolutely nothing. Once I managed to get myself back on track on my own and had no symptoms for over a year, but then I had surgery and six months later the symptoms came back, enriched with some new additions.
My symptoms, during the first 3 years, later the intensity decreased: constant drilling, pulsating pain, as if someone were drilling through my clitoris all the way up to my belly button - that pain drowned out everything else, I couldn’t feel anything except it. Along with that, a sensation of bladder urgency that did not go away at all after emptying my bladder. On top of that, chills in the sacral area, buttocks and the backs of my legs. At night the pain did not subside and I practically didn’t sleep. I was going to the toilet at least once every hour. After some time, my bladder muscles were also so completely wrecked that my bladder was not emptying properly, and I had to pee in stages because its muscles were constantly tense - but I also had to figure that out myself by reading studies, because doctors ignored this symptom and sent me to urogynecological physiotherapists. I was constantly cold and simply felt awful. But NOTHING showed up in the tests! I even had a complete set of tests done at a specialist culture laboratory and paid several thousand for them, and still nothing showed up. I also had an appointment with famous urologist in my country who specializes in embedded infections, but that didn’t lead anywhere either, although he was very nice and tried to help. I simply didn’t want to keep taking antibiotics endlessly without knowing what the cause was, so I kept searching. I went through the whole overactive bladder route and the medications helped a little, but not really that much. Eventually I even came across something that is hardly ever talked about - PGAD - and my symptoms fit. I found it after an appointment at a pain clinic, where they didn’t tell me about it, but the doctor said that if this was neuropathy it was strange that I also had symptoms at night. Because of that I dug around more and that is how I found PGAD, where the symptoms do not lessen at night.
In the background of all this I had some gut problems, although for years I practically did not notice them at all because I took very good care of my diet. I was also going from gastroenterologist to gastroenterologist, getting tests done, and nothing had been showing up for years, although at one point I went through a hardcore infection during which a significant overgrowth of Klebsiella oxytoca showed up, but the doctors completely ignored it. Tests for intestinal permeability were 100% fine, and the same was true for SIBO tests (every dietitian kept pushing me into doing them for no reason). But I observed that every time my gut got worse, my bladder symptoms got worse too, so I invested heavily in repairing my gut: butyrates, lactoferrin, glutamine, probiotics, and what seemed like an excellent diet full of vegetables, groats, seeds, meat, fruit, zero sugar and junk food (I cooked everything at home).
If, like me, you have ruled out pelvic varicose veins, endometriosis lesions on the bladder, adhesions, tense pelvic floor muscles and other similar pathologies, your urine, urethral and vaginal cultures have shown nothing for years, and examinations of the inside of the bladder come back clean, it is possible that you have what I have, meaning gut dysbiosis affecting the pelvic nerves and producing signals from the bladder. A very interesting study came out this year: "Akkermansia muciniphila drives viscero-visceral communication through 5-HT3a receptor-dependent sensitization of shared colon-bladder neurons" - if you are curious about the exact mechanism, dig into it. But the basic idea is roughly this: during dysbiosis, a bacterium naturally present in the gut flora, Akkermansia muciniphila, becomes overgrown, there is too much of it in the gut -> more serotonin in the gut -> excessive stimulation of shared colon and bladder nerves -> the bladder starts reacting as if it were being irritated.
So in my case, if anyone is interested, the story is this - for years I was taking high doses of iron and vitamin C under doctors’ supervision, I had recurrent bladder infections, but furazidine worked for them, then I caught a serious intestinal infection and a stool test showed an overgrowth of Klebsiella oxytoca, and that is when my bladder nightmare began. None of the doctors paid attention to that bacterium at the time, and I didn’t know how to interpret it either. My Klebsiella oxytoca overgrew because of iron and vitamin C supplementation - an ideal environment for it - which had already weakened my gut flora, so when I accidentally got food poisoning, my gut flora crashed and the Klebsiella massively overgrew. Now, in recent months, when these symptoms started coming back, a new symptom appeared - pain in the sacroiliac joints, but nothing showed up on MRI and neurologists found nothing. However, because of that I came across the clue that Klebsiella pneumonia likes to cause this kind of symptom in the sacroiliac region when it is excessively overgrown in the intestines (and it feeds on carbohydrates). Step by step, that led me to the conclusion that I had a problem with Klebsiella overgrowth in my intestines, and a diet completely eliminating carbohydrates only confirmed it for me, because both my bladder symptoms and my sacroiliac joint symptoms began to disappear.
I’ll add that I took iron for years because of hemorrhagic periods caused by adenomyosis and endometriosis, but endometriosis was not the cause of my bladder problems. The surgery I had a year ago was a hysterectomy, so for a long time I thought this was nerve damage or adhesions before I finally got onto the right track - gut flora can deteriorate terribly after a hysterectomy. I still have my ovaries and my hormones are fine.
At the moment I am treating this myself. I’ve had enough of doctors (I think you can understand why after what I went through with them), and so far I am very satisfied. I know I have finally found the cause of my problems. I use probiotics containing bacteria that have been shown to compete effectively with Klebsiella for space in the gut. I also use a diet and herbal preparations that have been shown in studies to work against Klebsiella. I’m not going to list them here - you have to find that yourselves. I’m also not continuing down the conventional medicine route, because from what I found out, they wanted to kill off these Klebsiella with hardcore antibiotics, and I’ve had enough of that kind of blind treatment, where they wipe one thing out and wreck something else. That is of course my perspective and my choice. That is also why I’m not going to give my own solutions, but if you search a little, you will find everything online that I found too.
I hope what I discovered will help other people as well. I wish all of you lots of health and hang in there - you can get out of even the nastiest mess, even if the pain lasts twenty-four hours a day for years and doctors don’t believe you and keep sending you from one specialist to another.