image copyrightMonica Thomas
This note contains detailed descriptions of medical symptoms.
Monica Thomas was a teenager when she began to experience itching and pain in her vulva; However, despite his numerous visits to the doctor, he was told that it was a yeast infection.
His symptoms worsened: sores and blisters appeared, causing constant pain.
"I spent a lot of time confined to bed because I couldn't walk," she says.
Monica says that, over the course of six months, she was examined 28 times before being offered a biopsy.
She notes that as a society, "we don't really talk" about gynecological health, so there is a taboo when it comes to treating these symptoms.
"Even when we go to the doctor, I find it embarrassing to have to undress... having the doctors look at you, it's very embarrassing," she says.
"But on the other hand, when you feel pain, itch or discomfort, living with it is just as terrible."
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The 34-year-old woman from Suffolk was eventually diagnosed with a condition called lichen sclerosus.
image copyrightDr Nighat Arif
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This chronic inflammatory condition affects the genitals and can cause white spots to appear, accompanied by itching, pain, fissures and tears, explains doctor Nighat Arif, who specializes in women's health.
It affects both men and women, although it is more common in women over 50 years of age. It also carries a risk, although low, of developing vulvar cancer.
"Sexual intercourse and urination are very painful, and it is often confused with sexually transmitted diseases, but it is not contagious," he points out on BBC Radio 5 Live's "That Time of the Month" podcast.
Research on the prevalence of vulvar lichen sclerosus is limited.
However, an analysis carried out by the University of Bristol in the West Midlands and Warwickshire regions of the United Kingdom estimates that it affects approximately 1% of women.
In the world, it is estimated that around 3% of women suffer from it.
Doctor Sophie Rees, who took part in the study, told the BBC: "This figure is almost certainly an underestimate as we know that diagnosis is often delayed considerably - in fact, some people may live their entire lives without receiving a diagnosis."
"Unfortunately, there is a lot of shame and embarrassment when it comes to seeking help for vulvar symptoms, as well as a lack of awareness, even among healthcare professionals."
And he adds: "More research is urgently needed to determine the true prevalence."
"A lonely and horrible time"
Monica claims the multiple misdiagnoses had a "significant" impact on her mental health.
"I didn't know how to move forward...not having any answers, it was a really horrible, lonely time."
He was prescribed medication for herpes. "I remember a very unpleasant moment during a consultation with a dermatologist, who got quite angry with me when I said, "It's not that."
"Then he asked me to take blood tests to check if I had HIV."
Doctors told him he was "too young" to have lichen sclerosus.
"But unfortunately, women can suffer from it at any age; it can even appear in childhood. It was a very difficult situation, but I always knew that something was not right."
Monica believes there should be more support for people suffering from lichen sclerosus.
"Once you receive the diagnosis, you don't always have the right treatment; I don't even get checkups," he says.
"I'm managing it on my own with a steroid cream and I hope I'm doing everything right."
According to the NHS website, the cause of lichen sclerosus is unknown. It could be because the immune system attacks and damages the skin by mistake.
It is not contagious, nor is it caused by infection or poor personal hygiene. Rubbing or injuries to the skin can trigger the condition or aggravate it.
image copyrightClare Baumhaeur
Clare Baumhaeur, 53, from Kent, UK, first experienced symptoms at age five.
"I was itchy and in pain, and they were constantly scolding me; obviously I wasn't aware of what was happening."
His symptoms worsened as he reached adulthood, manifesting in the form of tears, blisters and sores.
"But, since you don't see other vulvas, I had no idea that mine was not normal. Furthermore, by then they had already done eight cytology tests and they never told me anything."
In 2016, Clare suffered a tear that would not heal.
"I was 43 years old; I had been like this for 38 years and I just couldn't take it anymore."
A GP told Clare she had herpes and suggested she go to a sexual health clinic; She says she was "shocked" since she had been married for 25 years.
Finally, she was referred for a biopsy, after which she was diagnosed with lichen sclerosus and vulvar cancer.
"I had never heard of it"
"I had never heard of lichen sclerosus and, furthermore, I had a type of cancer that I had never heard of, located in a part of the body that I had never heard of either.
It was the first time I heard the word "vulva"; "No healthcare professional had mentioned it, so it was a lot of information to take in at the time."
Clare had been in remission from vulvar cancer for seven years when a routine check-up detected a recurrence, prompting her to undergo surgery three years ago.
In June, another check-up revealed the presence of precancerous cells, so he had to undergo a sixth operation.
Clare believes that if she had been diagnosed with lichen sclerosus earlier, her cancer could have been detected before it reached stage three.
"I had to have radiotherapy on two occasions, which caused sudden early menopause, lymphedema and nerve damage."
Monica encourages women experiencing changes in their body to keep a journal.
"It is very important that we know our bodies better—including what is normal for us in our intimate areas—since, in reality, our vulvas do change.
If they don't take you seriously, seek other opinions; keep insisting, because you don't have to live without answers.
She recommended the Lichen Sclerosus Guide, which includes a diagram and template to help you talk to doctors.
Some tips to detect lichen sclerosus
Get familiar with what is normal for you. In order to see these anomalies, it is key to self-examine.
We asked Sophie Rees, an academic at the University of Bristol, also in the United Kingdom, what is the method to be able to do it more comfortably.
To begin with, you should get into a comfortable position where you can hold a mirror or selfie stick with your phone at one end and record with the camera.
It can also help to ask another person you trust to hold the mirror for you or take a photo or video.
In the case of a mirror, it may be helpful to use one that has magnification to more easily see changes in the skin of the vulva.
You can position yourself as if you were doing squats, with the mirror on the floor, sit leaning against the wall or lie in bed on pillows.
Choose a time when you are not menstruating for a first observation. Then you can do it while you menstruate to know the changes that the vulva has during this period.
Do not use creams before making the observation or consulting with a health professional.
You can save the photos or videos in a hidden, password-protected folder, and take them to the doctor to track symptoms.
What to watch:
Some symptoms of lichen sclerosus:
Each person has different characteristics. And that's also the case with vulvas: each one is different.
So the ideal is that you observe your vulva from time to time to recognize it and know its normal characteristics.
"I think one of the big things to change is understanding what is normal for you. Looking at yourself for the first time can be overwhelming and confusing. It's best to get used to it," says Sophia Rees.
With additional information from Alicia Hernández.
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