Photo credit, Monica Thomas
This article contains detailed descriptions of medical symptoms.
Monica Thomas was a teenager when she began experiencing intimate itching and pain, but despite numerous medical visits, she was diagnosed with vaginal yeast infection.
Her symptoms worsened, with sores and blisters leaving her in constant pain.
“I was bedridden for a very long time because I couldn’t walk,” she says.
Monica says she underwent 28 tests in six months before she was offered a biopsy.
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She explains that "in our society, we don't really talk about" gynecological health, which creates a taboo around talking about symptoms.
“Even when we go to the doctor, for me, the embarrassment of having to undress… in front of the doctors, it’s embarrassing,” she says.
“But, in the same way, when it hurts and itches and you feel discomfort, living with it is just as painful.”
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The 34-year-old from Suffolk was eventually diagnosed with lichen sclerosus.
Photo credit, Dr Nighat Arif
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This chronic inflammatory condition affects the genitals and can cause the appearance of white patches accompanied by itching, pain, cracks and tears, explains Dr Nighat Arif, a general practitioner specializing in women's health.
It affects both men and women, but is more common in women over 50. There is also a small risk of vulvar cancer.
"Sex and urination are very painful, and it's often confused with sexually transmitted diseases, but it's not contagious," she tells BBC Radio 5 Live's That Time of the Month podcast.
Research into the prevalence of vulvar lichen sclerosus is limited, but an analysis carried out by the University of Bristol on people living in the West Midlands and Warwickshire estimated that it affects around 1% of women.
Dr Sophie Rees, who helped carry out the research, told the BBC: "This is almost certainly an underestimate, because we know that there is often a very long delay before diagnosis, and some people probably live their whole lives without being diagnosed."
“Unfortunately, there is a lot of shame and embarrassment around seeking help for vulvar symptoms, as well as a lack of awareness, even among healthcare professionals.”
“More research is absolutely needed to know the true prevalence,” she adds.
“A period of loneliness and horror”
Monica says multiple misdiagnoses have had a "significant" impact on her mental health.
“I didn’t know how to continue… without answers it was a horrible and lonely time.”
He was prescribed medication for herpes. "I was very upset at an appointment with a dermatologist who got angry with me because I said, 'that's not it'."
“Then she said she wanted me to do blood tests for HIV.”
Doctors told her she was "too young" to have lichen sclerosus.
"Unfortunately, this happens to women of all ages, even from childhood. I found it very difficult to accept, but I always knew it wasn't normal."
Monica believes there should be more support for people with lichen sclerosus.
“Even with a diagnosis, you are not necessarily treated as you should be; I am not even entitled to a health check,” she says.
"I'm handling this on my own with my 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 due to a reaction of the immune system which attacks and damages the skin by mistake.
It is not contagious and does not result from infection or poor personal hygiene. Rubbing or breaking the skin can trigger or worsen the condition.
Photo credit, Clare Baumhauer
Clare Baumhauer, 53, from Kent, first experienced symptoms when she was five years old.
"I was itchy and sore, and I was constantly scolded; I obviously wasn't aware of what was happening."
Her symptoms worsened as an adult, with tears, blisters and sores.
"But since you don't see other vulvas, I had no idea mine wasn't normal. I'd also had eight pap smears during that time, and no one ever said anything to me."
In 2016, Clare had a tear that didn't heal.
“I was 43 that year, and after 38 years of illness, I couldn’t take it anymore.”
A GP told Clare she had herpes and needed to go to a sexual health clinic. She said she was "shocked" because she had been married for 25 years.
She was eventually referred to a specialist for a biopsy and was diagnosed with lichen sclerosus and vulvar cancer.
“I had never heard of it”
“I had never heard of lichen sclerosus and I had cancer I had never heard of, in a place I had never heard of.”
“It was the first time I had heard the word vulva, no medical professional had mentioned it, so it was a lot to take in at that time.”
Clare had been in remission from vulvar cancer for seven years when a regular check-up revealed a recurrence and she underwent surgery three years ago.
In June, another test revealed precancerous cells and she underwent a sixth surgery.
Clare believes that if she had been diagnosed with lichen sclerosus earlier, her cancer might have been diagnosed before it reached stage three.
“I had to undergo two sessions of radiotherapy, which caused me to have early and immediate menopause, lymphedema and nerve damage.”
Monica encourages women who notice changes in their bodies to keep a journal.
"It's really important that we learn more about our bodies, what's normal for us in our private parts too, because in reality our vulvas change."
“If you are ignored, ask for several opinions, insist because you do not have to live without answers.”
She recommended the Lichen Sclerosus Guide, which has a diagram and template to help you talk to doctors.
Have you been affected by the issues raised in this story? Get in touch.
We used AI to help translate this article, originally written in English. A BBC journalist checked the translation before publication. Learn more about how we use AI.
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