r/CytolyticVaginosis

Hello,
I now have ongoing pain and discomfort especially on my vulva since over 1 1/2 years.
It always feels like a stubborn yeast infection, but now the tests are all negative and yeast medication is making things kind of worse as they irritate me even more.

I was reading about cytolytic vaginosis and was wondering if this could be the case for me, and i remembered that doctors would always tell me „you have more than enough lactobactilli!“ and I was so confused why I have constant symptoms then !

It would be sooo helpful if someone could help and tell me if my symptoms match this condition or if you are experiencing similar symptoms! Also, how to diagnose it ( on your own).

My symptoms are :
- white discharge that builds up on my vulva, already after not showering for one day ( kind of like smegma ) and that irritates me and has kind of an unpleasant smell - i don’t know if this is normal, but I haven’t always had that much smegma
- dry skin and not much lubrication
- burning ( sometimes after peeing) and pain especially on my inner and outer labias
- extreme high sensitivity in my entire intimate area, hurt to touch
- worst time is ovulation till period, almost no pain during period
- history of yeast infections

I guess as I’m dealing for such a long time with this, I propably also developed vulvodynia, but I have a feeling that it’s not only that, but there’s still something else that keeps irritiaring my skin !

Does anybody have similar symptoms ?
Thanks for answers !

Full Text (since paywalled):

Farrah was fed up with her vagina.

For the past two years, the 29-year-old dancer from Ohio had been dealing with severe pelvic pain and vaginal odor. “It was like 8/10, horrible core pain,” she says. “I couldn’t lie down. I couldn’t even work an office job. It was bad.”

When she visited doctors, she told them what she thought the culprit was: an allergic reaction to soy oil in a vat of water she’d swam in during a pirate-themed dinner theater performance. But they didn’t believe her. “They attempted to fix it with antibiotics,” she says. “And they just did nothing.”

So Farrah (who requested we withhold her full name to speak freely about health matters) started Googling her symptoms. That’s how she stumbled on NeuEve, a vaginal health company that provides supplements, suppositories, and at-home vaginal microbiome testing kits.

She ordered a test from the company for $150, and it came back with a diagnosis: aerobic vaginitis (AV), a bacterial infection caused by an overgrowth of E. coli or streptococcus. She ordered supplements the company recommended, and she says the pain abated almost immediately. “I was just so glad to actually know what was wrong,” she says.

Farrah is one of a growing number of women who have used at-home tests to self-diagnose issues with the vaginal microbiome—an ecosystem of bacteria growing inside the vagina; the presence of “good” bacteria correlates with lower risk of STIs and other types of infections, according to numerous studies. The industry got a shoutout when the Silicon Valley entrepreneur Bryan Johnson recently posted on X that he had just given oral sex to his girlfriend, Kate Tolo, then followed up with a screengrab of her Tiny Health vaginal microbiome report. He proclaimed that she scored “100/100” and that hers was in the “top 1% of all vaginas” due to the dominance of Lactobacillus crispatus, a type of “good” bacteria found in the vagina.

Johnson’s thread garnered widespread mockery, with many questioning why Johnson would publicly quantify his partner’s vaginal health in such a fashion. But it also received replies from women online who are tracking their own vaginal microbiomes to treat their bacterial infections, to boost fertility, or just out of interest. Some even posted their results.

The market for at-home vaginal microbiome tests is growing—Tiny Health, the startup Tolo used, claims vaginal health testing sales spiked 2,000 percent within the first 48 hours of Johnson’s post—and similar companies include Juno Bio, which partners with Neueve; the UK-based Daye, and Evvy. But some experts believe there’s not yet enough research to support the long-term validity of such tests. None of the at-home kits on the market are approved by the FDA. There are also questions as to whether they empower women to take their health care into their own hands or simply create more anxiety for them.

Twenty-eight-year-old Samantha (she also requested a pseudonym given the sensitive nature of this topic) developed an interest in vaginal microbiome testing after experiencing a bout of bacterial vaginosis, or BV. She ordered a testing kit from Evvy upon the recommendation of the Facebook group Beyond BV, which offers support for women with recurring vaginal infections, and where they often post their own results.

Samantha found her test results useful, but she also noticed a distinct strain of paranoia within the group. For instance, when many women receive their results, they tend to focus on whether they have enough Lactobacillus crispatus, or “good” bacteria, in the vagina. “I'll read posts where women are freaking out if they have like 97 percent crispatus and then they'll retest and they'll have like 60 percent and be really disappointed and scared,” she says. The opposite also holds true. “Women will post about having 100 percent crispatus and other women in the comments will just be like, ‘Oh, I'm so jealous, I'm having so many issues, I hope to be you one day.’”

In internet communities like the subreddit r/Healthyhooha , which has more than 100,000 members, women regularly discuss their ratios of “protective” to “destructive” vaginal bacteria, often trying to optimize the former. Some take vaginal microbiome tests multiple times, as a preemptive measure to avoid future infections. Research indicates that 50 to 80 percent of women who get BV once will get it again.

Longevity researcher Kayla Barnes-Lentz tests her vaginal microbiome about twice a year and publicly posts her results. (She also uses Evvy and acts as a paid adviser for the brand.) She started testing it not because she has any underlying health issues, but because she wants to do everything in her power to try to boost her numbers—for instance, she says she got her 97 percent protective bacteria score up to a 100 percent by taking vaginal probiotics.

“We know that decline occurs as we age, and I want to be as protected against that as possible,” she says. “I’m always striving, and I’m always in competition with myself.”

Evvy founder and CEO Priyanka Jain says the company has served more than 100,000 patients since its launch in 2020. She says that while the vast majority of her customers struggle with preexisting vaginal health issues, 10 percent take the test out of “curiosity,” and more than 50 percent are regular subscribers, taking the test every three months, either to track their fertility or prevent recurrence.

There’s a paucity of research surrounding the vaginal microbiome in comparison to the much better-known gut microbiome. This is in part due to gender bias within the scientific research community, says Hana Janebdar, the founder and CEO of the vaginal microbiome testing startup Juno Bio. Historically, “there has been this huge amount of research and commercialization into every aspect of microbiomes except how it pertained to women's health,” she says.

But even though recurring BV infections among women are a legitimate issue, some researchers say the utility of taking an at-home vaginal microbiome test is debatable—especially when one is asymptomatic, as Barnes-Lentz and Tolo were.

The vaginal microbiome is ever-fluctuating and can vary depending on factors like diet, sexual activity, and whether someone is pregnant or menstruating, says Jacques Ravel, a vaginal microbiome researcher at the University of Maryland. (Ravel is also listed as a scientific adviser to probiotics company Seed.) “It’s a very dynamic system,” he says. “Knowing what happened at one point in your life won’t really tell you much about what’s going to happen even two weeks from now.”

Vaginal microbiome diversity also varies by race and ethnicity: Black women, for instance, are statistically more likely to have less Lactobacillus crispatus, the protective bacteria, than white women of European descent, but that doesn’t necessarily indicate a problem with their vaginal health. And some women can have little to no lactobacillus and be perfectly healthy.

The tests also typically suggest treatment protocols like antibiotics or probiotics, some of which can disrupt the bacteria ecosystem in the vagina if introduced unnecessarily. “You're going to maybe end up with something that might not be optimal for you, and all of a sudden you're going to start having problems,” such as worsening irritation or discomfort, Ravel says. “I think that’s dangerous.”

When asked about such critiques, the CEOs I spoke with take issue with the idea that the tests provide zero insight into long-term vaginal health, arguing that results fluctuate far less than Ravel suggests. While Kimberley Sukhum, the chief science officer at Tiny Health, agrees that unnecessary treatment such as antibiotic intervention “can be harmful,” she says biomarkers such as lactobacillus dominance are “not fleeting signals. They reflect the underlying character of a woman’s vaginal community at a given point in time and are associated with real health outcomes.”

Regardless of the long-term utility of the tests—or, at the very least, the ludicrous idea of a woman having a “top 1%” vagina—their popularity undoubtedly points to a larger issue within the women’s health space. Until 1993, researchers were not legally required to include women in clinical trials, contributing to a massive gender gap in data. The women who regularly test their vaginal microbiomes are trying to find their own answers within a medical system that has largely failed them.

“We have not done extensive research or funded enough for extensive research to come up with new medicine to solve this problem,” says Ravel. “For almost 50 years, we have not come up with a solution to help women. And I think that’s very, very sad.”

After suffering with itching since January I finally found out the only things that calms/stops the itching is bicarb. I was tested for thrush and bv and they came back as negative. I took loads of probiotics after being on antibiotics for 9 months. So I’m pretty sure it’s CV.

I have been referred to the gynaecologist but the nhs takes MONTHS to see you.

I was wondering if it is okay to keep using the bicarb capsules/sitz/paste long term? Asking on here as my doctor has no idea what CV even is.

Thank you!!

After developing a severe thrush infection, Philly Baines says chronic vulval pain left her bedbound and suicidal – something she says could have been avoided with the right support. And when she shared her experience online last year, the comment section was flooded with other women detailing hauntingly similar experiences.

Hello I'm a 28-year-old woman and I've had recurring yeast infections, often due to constipation (I didn't even realize it) and washing too often with perfumed soaps. Each time, I use Cicatridine suppositories (hyaluronic acid), which would clear up, but then reappear a month or two later. After that, I realized I also had all the symptoms of bacterial vaginosis (three months ago). It was HORRIBLE. The foul odor, colored discharge (never blood), pain in my clitoris and vulva, pain when I urinate, and itching inside my vagina. So I took Hydralin Balance. After two days, I had almost no symptoms. Now I feel like I have both at the same time. I made an appointment with the doctor, but it's in a week. In the meantime, what can I do? Should I use suppositories for yeast infections? Or rather, Hydralin Balance? In the meantime, I'm still applying Cicatridine cream to soothe my vulva and clitoris. I don't know what to do anymore. Should I take probiotics? (I've also made an appointment for an STI/STD test.) I can't take it anymore 💀💀 (P.S. This last flare-up started the day before my period, so two days ago.)

So I posted in r/Healthyhooha a few months ago about how excited I was that I beat bv after 7 years!I’m talking about I tested POSITIVE 7-8 times last year alone and every other year most likely in similar numbers as well. I followed the cdc guidelines exactly and got 2 negative results in a row which has never happened!! The cdc guidelines is 21 days of boric acid (I started my antibiotics on day 7 of this) and then I did a week of vaginal probiotics and then the following week used probiotics in day time and boric acid if I had sex or something then just quit taking everything entirely. I started the boric acid January 1st for a time reference. I’ve done boric acid twice on 2 separate standalone occasions weeks/months apart from then til now.

Well the cdc doesn’t warn you of the risk of CV doing this method of getting rid of BV cus why would they? 🫠

I’ll say I felt “normal” for maybe a month before the CV like symptoms started occurring which it started with the burning that would stop during my period then come back as soon as it was over. I thought it was maybe a UTI until the same pattern happened before my period this month 😭

Now I still have constant urgency with urination, still constantly feel like I don’t get it all out, but NOW IT BURNS LIKE HELL EVERY TIME I PISS TOO for like 2 weeks before I start my period and like 1 week after 🫠 the urgency and feeling like it doesn’t all come out is constant, only the burning goes away (and then comes back 🥹) like these are the exact bv symptoms (sans burning that was sometimes a symptom but not every time) that I was fighting to get rid of for 7 years!!

Soooo how do we get rid of CV?! According to google the doctors don’t prescribe anything for it if I even feel like wasting my time attempting to get tested 🫠 goodness gracious all I want is a normal vagina 😭😭😭😭😭

The reason I said that ab the doctor is bc when you’re on medicaid they typically won’t let you get tested for anything outside the regular bv/sti panel or pee for a uti 🫠