Chapter 4

Say Hello to My New Friend, Cytolytic Vaginosis

Posted: October 17th, 2026

Finally, I got confirmation that my self-diagnosis had been right. I felt both relieved and confused. But getting an answer didn’t mean I had a solution. There is still no proper treatment for cytolytic vaginosis.

01

Gynecologist #4: “We’ll fight these dark forces!”

When three months had passed since my last intense “episode”, things went downhill again for the first time in a long while. For almost two weeks, the stinging and discomfort were incredibly bothersome. As it turned out, my menstrual cycle was once again the culprit. My period started a full week earlier than expected. Things improved again as soon as it started, but the discomfort was still very much there. My brain, however, had already switched into full panic mode and was 100% convinced that the UTI was back.

I decided to reach out to private clinics to see if I could pay out of pocket for a comprehensive urine culture (for some reason, this option isn’t listed publicly anywhere). I eventually heard back from the country’s leading private clinic, which said they could run an aerobic culture. The results came back negative.

The theory of cytolytic vaginosis, which I’d completely buried in the meantime, slowly crept back into my awareness. My brain had essentially gone full circle with its logic: “It’s definitely cytolytic vaginosis” → “It’s actually a UTI; I’m an idiot for thinking it was cytolytic vaginosis” → “Wait, what if I do have cytolytic vaginosis after all?”

The fact remained that, even though I’d been feeling reasonably well for months thanks to my anxiety easing up, the discomfort had always been lurking in the background, occasionally knocking loudly on the door right before my period. I realised that my “I surrender” theory wasn’t working. It was time to pull myself together and keep searching for a solution.

I booked an appointment with a fourth gynaecologist. My expectations weren’t high. I don’t know about you, but I’ve noticed that when you go into something with zero expectations, they usually end up being exceeded threefold. The doctor who greeted me was a total powerhouse in the best way possible: an older woman who was genuinely invested in my story. I felt like she’d made it her personal mission to find an answer. After I told her my story and described my symptoms, she immediately said it sounded like cytolytic vaginosis. She ran a full set of tests, including one for cell lysis. Before I left the office, she looked at me and said, “We’ll fight these dark forces together!”

The test results came back, and the cell lysis confirmed it… I finally had solid proof that it really was cytolytic vaginosis. In a way, it was a relief, but at the same time, not so much. There’s still only one known treatment: a baking soda solution. Some women get relief from it, while others don’t. Many women on Reddit said it had triggered a UTI for them. Reading that filled me with absolute dread.

And once again I started wondering: was it possible that, at the very beginning, I’d only had cytolytic vaginosis, and that rinsing with baking soda had actually caused a UTI on top of it? Then again, on that horrible “barbed wire morning”, my urine had also had a strange smell, which cytolytic vaginosis shouldn’t cause. Ugh, who knows… It’s a bit like the classic question: what came first, the chicken or the egg?

02

Hello, smart people – why do I need to make my own medicine?

One thing is that no better treatment for cytolytic vaginosis has been found yet than plain old baking soda. Another thing is that nobody has even bothered to make using that damn baking soda any easier for women.

My doctor recommended baking soda sitz baths, but I remembered Gynecologist #1 telling me they weren’t particularly effective. Plus, plenty of women on Reddit were saying the exact same thing. While browsing Reddit, I came across a recipe for making my own baking soda suppositories to use twice a week. They were supposed to be effective and seemed much more convenient than having to sit with my bum in a bath every single day. Besides, the whole sitz bath thing didn’t feel particularly hygienic to me, either.

Still, making my own medicine felt terrifying. The amount of baking soda had to be pretty much exactly the size of a Tic Tac — too little wouldn’t work, and too much could cause a burning sensation. It’s completely absurd that not a single pharmaceutical company has managed to put this stuff into properly dosed capsules…

Nevertheless, I plucked up the courage and ordered 1,000 empty gelatin capsules. You literally couldn’t order a smaller quantity. I also tracked down some organic baking soda. When I started playing chemist on the first evening, my anxiety was through the roof. On top of being terrified of getting the dose wrong, I was scared that bacteria might get onto the capsules while I was handling them in my kitchen. Obviously, I practically washed the skin off my hands before starting the process, but still…

The night after using my DIY suppository was weird. Some kind of fluid was leaking out of me — probably just the capsule melting. But the next morning, everything was fine, or more precisely, pretty much the same. I can’t say I noticed a massive difference, but thankfully, I didn’t feel any worse either.

There was a longer gap before my next “dose” because my period started. The silver lining was that, at least this time, my symptoms didn’t get worse beforehand. As usual, I felt pretty okay during my period, with the stinging sensation only flaring up again after it ended.

Unfortunately, the second suppository didn’t make much difference either, and even after the third, I still hadn’t noticed any real improvement… But hey, trying to stay upbeat here, I can at least say I didn’t feel any worse. It had been over a month since my last full-blown “episode”.

My stomach and digestion, however, were taking a hit because once again I was  strictly following the rule that you shouldn’t eat probiotic or fermented foods if you have cytolytic vaginosis. After three weeks with no change in my symptoms, I finally decided to have a little bit of yoghurt. And, of course, immediately afterwards, my brain tried to convince me that I’d just thrown all my progress out the window. I managed to more or less persuade myself that this wasn’t the case.

03

Maybe It’s Time to Let Go – Again

Unfortunately, my latest attempt to get rid of my symptoms has failed too. I used the baking soda capsules four times over the course of a month. After the last one, the stinging actually got worse. Even though the amounts of baking soda I used were very small, I had a moment of worry that I might somehow have thrown my vaginal microbiome off balance in the opposite direction.

I don’t even know whether this is a good thing or a sad one, but overall, I haven’t reacted very emotionally to this latest setback. I’m just so used to the attempts I make to get better not working out. And I don’t even mean that in a dramatic way — I really am used to it by now. I feel like letting go again and taking a break from dealing with this for a while. I could really use a little breather.

For now, I’ve been using a moisturising cream with a neutral pH (Cumlaude). It seems to have helped ease the stinging after my last baking soda capsule. It’s possible that the baking soda was too drying and made the vaginal walls more fragile. My plan for now is to keep using the cream, with short breaks in between. Once I’ve gathered a bit more energy, my next step will be to look into ways to regulate my hormones and how this might help with cytolytic vaginosis.

I’ve actually already had blood tests to check my hormone levels, and everything seemed to be within the normal range. However, the results weren’t reviewed by a doctor who specialises in hormones. I was simply given the reference ranges by the lab and could see where my own results fell on the scale. I think it’s worth repeating the tests and discussing the results with a doctor who specialises in this area.

So, stay tuned. I’m not giving up! I just need a little break, and then I’ll come back to this with renewed energy and enthusiasm. In the meantime, I’ll keep working on calming my nervous system and managing stress. My life has been a bit out of balance lately, mainly for other personal reasons. Of course, it doesn’t help when you’re physically uncomfortable most of the time and still can’t fully trust your own body. That’s how you end up in that good old vicious cycle: stress makes the physical discomfort worse, which in turn creates more stress. Wonderful.

That said! I really do need to emphasise that I feel so, so, so much better than I did a year ago. When I think about where I was back then, I get chills. There’s still a lot of work to do, both mentally and physically, but as they say, I really have come a long way.

My story so far..

Chapter 1

ChatGPT is Not a Doctor – duh!

Driven by my stubborn “good girl” mindset and ChatGPT’s false promises, I spent months misinterpreting my body’s signals—only to realize I was blindly fighting two separate conditions at once.

Chapter 2

The Worst Time of My Life

From dismissive doctors and failed treatments to the overwhelming anxiety and fear that consumed my life, this is the story of hitting rock bottom.

Chapter 3

A New Perspective on Pain

Shifting my mindset around pain and learning to listen to my body changed everything, but the real breakthrough came when I stopped chasing quick fixes and let my cycle reveal the truth.

Chapter 4

Say Hello to My New Friend, Cytolytic Vaginosis

Finally getting official confirmation that my original self-diagnosis was right brought both confusion and an immense sense of relief

I’ve decided that all the crap I’ve been through—and am still dealing with to some extent—is meant to help me share my story with women all over the world.