Cytolytic vaginosis (CV) is a little-understood gynaecological condition, thought to be characterised by an overgrowth of a type of so-call 'good' bacteria in the vagina. Sure, this sounds pretty small fry, in terms of things that can go wrong in the area. But the current thinking is that this imbalance irritates your vaginal wall, as well as causing a more acidic PH level – which seems to result in some pretty nasty symptoms.
These range from discomfort in the vagina, itching and burning on the vulva, pain during sex – or finding penetrative sex impossible, altogether – and white or yellowish discharge (for this reason, it might be mistaken for thrush or bacterial vaginosis.)
As you might expect with something that's not been so well researched, it's also controversial. Not all gynaecologists accept it as a stand-alone diagnosis and one recent review of the existing data stated that, when it comes to making receiving one, there is 'inadequate criteria for excluding other causes of vulvovaginal symptoms.'
Between the ages of 23 and 24, after a year of searching for answers to her debilitating pain, Lucy* was eventually diagnosed with the condition, by a private gynaecologist. Here, four years on, she shares her experience.
Living with Cytolytic Vaginosis: what happened to me
It was 2am and, just like every other night, I had spent the last three hours trawling internet forums, desperately searching for an answer. Yet again, I found nothing.
As I lay on my bedroom floor sobbing, the realisation that this might not – or even could not – be fixed paralysed me. I would never have sex again, that was certain. I needed to come to terms with the fact that I would surely end up alone, loveless and childless. I thought about all the times I had taken things for granted: intimacy, exercise, wearing underwear, not being in pain.
My body was numb, save for the searing sensation pulsating from my vagina. By this point, the pain was constant.
The cause of my suffering was a little known and often controversial condition, called cytolytic vaginosis (CV). If you’ve heard of it, I’m surprised. I hadn’t, and neither had most of the countless nurses, doctors, gynaecologists, dermatologists, GPs and sexual health professionals I saw. My symptoms were an enigma.
What is Cytolytic Vaginosis?
Also known as 'lactobacillus overgrowth syndrome' or 'Doderlein's cytolysis,' according to specialist private gynaecologist Dr Austin Ugwumadu, the UK medical definition of CV is: ‘A condition of the vagina characterised by an overgrowth/excess numbers of the normal acid-producing Lactobacillus (so-called good bacteria), lysis (or destruction/fragmentation) of vaginal epithelial cells, bare nuclei, and absence of inflammation.’
In plain speak, the delicate balance of bacteria in your vagina – also known as your vaginal microbiome – is compromised, due to an overgrowth of a group of acid-producing bacteria species which are grouped under the name 'Lactobacillus.' (Commonly cited as a 'good' bacteria, you might have see this word on the side of a packet of probiotics or on pots of yoghurt.)
This, the thinking is, can irritate the cells of the vaginal wall, causing them to be damaged and to even break away, while the PH level of the area tips into more 'acidic' territory. Some women may have this issue and not experience symptoms, while for others, like me, the pain can be stratospheric. Naturally, some cases will fall somewhere along this gradient.
Currently, there is no data on how many people deal with this problem
Currently, there is no data on how many people deal with this problem. It should be noted that not all medical professionals accept it as a stand-alone diagnosis – and one recent review of the existing data stated that, when it comes to making a CV diagnosis, there is 'inadequate criteria for excluding other causes of vulvovaginal symptoms, especially Vulvovaginal Candidiasis [a vaginal yeast infection.]'
While this problem has been referenced in a small amount of scientific literature, many health professionals I spoke to had not heard of it. One denied it exists, saying that it is 'impossible' to have too much 'good' bacteria.
When I asked for an opinion from the Royal College of Obstetricians and Gynaecologists on the matter, I was told this by spokesperson Dr Caroline Overton. 'There is still much that we don’t know about painful vaginal conditions, including Cytolytic Vaginosis. Many women suffer with vaginal pain which isn’t diagnosed for years and without a diagnosis, treatment options are unfortunately limited.
'There is increasing interest in the vaginal microbiome, which means the delicate balance of bacteria, yeasts and fungi found in the vagina – but we still have a long way to go to fully understanding it.
'There remains a significant gap in data when it comes to women and girls, and what the RCOG would like to see is medical research becoming much more inclusive to ensure they get the advice and treatment that's right for them so they can lead happy and healthy lives. We encourage women with painful symptoms not to suffer in silence and seek a referral to a gynaecologist so a diagnosis and treatment can be explored.'
When asked about the issue, meanwhile, an NHS spokesperson gave the following response: 'Conditions like this can be complex and difficult to diagnose, all of which means they are understandably distressing for people affected, which is why we would urge anyone experiencing painful vaginal symptoms to contact their GP or to attend a sexual health service so that they can be referred for appropriate diagnostic examinations.'
What causes Cytolytic Vaginosis?
So, why might this problem occur? ‘In the vast majority of cases, the precise cause of CV is unknown, though it may be linked to the intake or topical application of large quantities of probiotics and natural fortified yoghurt over long periods, or pregnancy, as the population of Lactobacillus species increase with advancing pregnancy,' explains Dr Ugwumadu.
My CV, I was ultimately advised, was probably caused by extensive use of antibiotics, antifungals and probiotics. It was a domino effect. Initially, I was prescribed strong, long-term antibiotics for a persistent bladder infection. Prolonged antibiotic use can cause thrush, and, in my case, the repercussions were severe. Anyone that has suffered from extreme thrush will likely have tried probiotics, which are often considered a safe way to bolster your ‘friendly bacteria,’ in the area.
To try and remedy the situation, I consumed large amounts of probiotics – two capsules of a strong blend a day – and went through multiple big tubs of natural live yoghurt a week. Combined with vast quantities of antifungal medication, I believe that I unknowingly had a recipe for disaster. The thrush cleared, and what I was left with was far worse.
What are the symptoms of Cytolytic Vaginosis?
‘Symptoms of CV include discharge, burning, soreness, itching, dysuria [pain while weeing] and pain during sex due to acid irritation and damage to the epithelial cells that line the inside of the vagina,’ says Dr Ugwumadu.
‘In women with CV, the vaginal pH is significantly more acidic. Symptoms tend to be worse in the build-up to the period and the majority of women will experience relief once their periods start. This is because menstrual blood is alkaline, which neutralises the acidity and decreases lactobacillus levels.’
Unable to concentrate due to the pain, my performance at work deteriorated. Near weekly doctor's appointments meant that I missed significant amounts of office hours. Codine was the only thing that provided relief, and after finding a prescription-strength stash in my mum’s room, I quickly became addicted. Doubling up on doses throughout the day, I’d fall asleep at my desk.
Underwear and trousers were impossible and I lived in skirts regardless of the weather. At its worst, I couldn’t walk and was signed off work for two weeks. Following a particularly tearful doctor's appointment, I was prescribed anti-anxiety medication to help ‘calm me down’. I spent those two weeks in bed. What a burden I was, I thought, to my family, my friends, the healthcare system. I tried to explain why I couldn’t go on nights out or to parties to my friends, but they couldn’t really understand the depths of the problem.
Why is so little known about Cytolytic Vaginosis?
While getting a diagnosis for CV is rare, vaginal issues are not. One in three women in the UK will suffer from a reproductive or gynaecological health problem, at some point. Even so, a lack of research into these conditions has historically been a huge issue. And, without research, new understanding and treatments don't happen. 'Until recently, there has been very little research in this area, but that is changing,’ confirms Dr Ugwumadu.
While that might be true, sexiest stereotypes plague the healthcare landscape. In one study which highlights the so-called ‘gender pain gap, ’a researcher from the University of Rhode Island found that, post-surgery, women are half as likely to receive pain-killers than men, for example. I reached out to women’s health research charity, Wellbeing of Women, to shed some light on this discrepancy. They said:
'Despite affecting 51% of the population, women’s reproductive health issues have long been hushed, taboo subjects. Too often, women struggle to be taken seriously and get the right information they need for basic health needs to be met.’
'The lack of importance placed on women's health issues means there has been a woeful lack of investment in research – 2.1% of all UK public health funding goes into reproductive health and childbirth – and these conditions are poorly understood.’
Each encounter with a health care professional was the same. I would arrive, having mentally prepared myself, and calmly present my symptoms: how it started, what treatments I had tried, the pain. I’d be met with blank stares and then be subject to an examination.
One of the reasons CV is so arduous to diagnose is because it presents itself like thrush. 'The symptoms of CV are indistinguishable from thrush and most women are treated for “vaginal thrush” for many years without success,’ explains Dr Ugwumadu.
How do you test for Cytolytic Vaginosis?
Getting a diagnosis itself is complex, and requires microscopic examination of fresh clinical samples, taken via vaginal swap. ‘This is cumbersome and outside the practice of most general gynaecologists,’ says Dr Ugwumadu. ‘Meanwhile, sexual health physicians [who perform this sort of microscopy] focus on sexually transmitted infections, which can leave affected women caught in "no man's land." ’
As I started visiting different healthcare specialists, the possible diagnosis would change. There was the thrush, again and again, but also vulvodynia – a condition in which there is pain, burning and discomfort in the vulva that isn't linked to a specific cause.
After a year of being passed from doctor to doctor, with no relief from my chronic pain, I became determined to figure out what was happening to me. I kept a diary of all my symptoms, noting down the treatments I tried and prescriptions I was given.
From the moment I got home from work, I would spend hours scouring the internet for an answer. Scientific journals, articles, forums: any information existing on Google about chronic vaginal conditions, I read. Through this, I came to believe that I most likely had CV. All the symptoms lined up. The problem now was finding someone who had knowledge of the condition.
How do you treat Cytolytic Vaginosis?
In the end, it was a post I discovered deep within an online forum that led me to private specialist Dr Ugwumadu. This, of course, is not a course open to everyone – I had to ask for the money for treatment, which ran into the thousands, from my parents.
Sitting in his office, I sobbed as when he said he believed me. It was the first time in over a year that I felt seen and heard.
'Very few doctors know about cytolytic vaginosis,’ he said. A week later my results arrived. He told me I had the worst case of CV he had ever seen, presumably because I'd consumed high doses of antifungals and probiotics for so long.
Treatment, although there is no definitive cure, involved self-administering a sodium bicarbonate solution into the vagina via douche. The goal is to restore pH levels, prevent lactobacillus from multiplying and in turn, stop the acidic discharge. As women, we are warned about douching and advised to avoid it at all costs for fear of displacing the delicate vaginal ecosystem.
With CV, the ecosystem is already disrupted and overpopulated by lactobacillus. It felt unnatural, but it was the only thing that worked. Dr Ugwumadu also states that, in some hard to treat cases, a course of an antibiotic may be prescribed, though this runs the risk of thrush developing.
Do not attempt to self-administer this sort of treatment, without being explicitly advised to by a gynaecologist
Following a diagnosis, my recovery was excruciatingly long. Once I started treatment, I had hoped for a quick fix, but it was several years before I felt ‘better’. The day I was able to wear trousers again, I sobbed with joy.
To say I am one hundred per cent back to normal would be a lie. Though I am no longer in pain, following years of repeated trauma, the area is extremely sensitive and easily irritated. I still avoid everything I was advised to: tight leggings, thongs, swimming in chlorinated pools, having rough sex or using scented shower gels.
All my underwear is washed in fragrance-free detergent and I have not ridden a bike in approximately five years. I live in constant fear of having a relapse – and have had many. The effect it has on my relationships is undeniable, both physically and psychologically. I struggle to get close to people and intimacy can be an issue. I wish that it were easier to explain what I’ve been through and what that means for me now.
During my darkest times, when I had truly lost hope, this article would have been a lifeline. By sharing my story, I hope that I can help someone feel less alone. If you are dealing this sort of chronic pain, I want you to know I believe you. You are not 'crazy.' Somebody will help you, and, one day, things will be better.
*Name has been changed
What should I do, if I have painful symptoms?
If you are suffering from gynaecological symptoms, the NHS advises that you 'contact your GP or to attend a sexual health service so that you can be referred for appropriate diagnostic examinations.'
The RCOG advises that 'women with painful symptoms seek a referral to a gynaecologist so a diagnosis and treatment can be explored.'
Cut through the noise and get practical, expert advice, home workouts, easy nutrition and more direct to your inbox. Sign up to the WOMEN'S HEALTH NEWSLETTER
You Might Also Like