Credit, Personal file
Monica Thomas was in her teens when she started to feel itching and pain in her intimate area. However, despite numerous visits to the doctor, her symptoms were dismissed as just candidiasis.
Her symptoms worsened, and the sores and blisters left her in constant pain.
"I was bedridden for a long time because I couldn't walk," she says.
Monica claims she was examined 28 times in six months before doctors offered her a biopsy.
She says "we don't really talk about" gynecological health as a society, so there is a taboo about symptoms.
"Even when we go to the doctor, for me, the embarrassment of having to take off my clothes... with these doctors examining them, is embarrassing," he says.
"But by the same token, when you're in pain, itching or discomfort, living with that is just as bad."
At 34 years old, the resident of Suffolk, England, ended up being diagnosed with a condition called lichen sclerosus.
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Credit, Dr Nighat Arif
The chronic inflammatory condition affects the genitals and can cause the appearance of white patches accompanied by itching, pain, cracking and cracking of the skin, says Nighat Arif, a doctor 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 developing vulvar cancer.
"It is very painful to have sex and urinate, and the condition can be confused with sexually transmitted diseases, but it is not contagious," she told the BBC.
Research into the prevalence of vulvar lichen sclerosus is limited, but an analysis carried out by the University of Bristol of people from the West Midlands and Warwickshire regions estimated that the condition affects around 1% of women.
Sophie Rees, who helped lead the research, told the BBC: "This figure is almost certainly an underestimate, as we know there is often a very long delay in diagnosis, and some people probably go their entire lives without receiving a diagnosis."
"Unfortunately, there is still a lot of shame and embarrassment in seeking help for vulval symptoms, in addition to a lack of knowledge on the subject, including among health professionals."
She adds: "More research into the true prevalence is sorely needed."
'A lonely and horrible time'
Monica claims several misdiagnoses have had a "significant" impact on her mental health.
"I didn't know how to go on... without having answers, it was a horrible, lonely time."
She received medication for herpes.
"I was very shaken during a consultation with a dermatologist, who was very angry with me because I said: 'that's not it'.
"Then she said she wanted me to get blood tests for HIV."
Doctors told her she was "too young" to have lichen sclerosus.
"But unfortunately, women of all ages can have the condition, including in childhood. So I found it very difficult, but I always knew it wasn't right."
Monica believes there should be more support for people with lichen sclerosus.
"Even after you're diagnosed, you don't get proper treatment. I can't even get a routine checkup," she says.
"I can manage it myself with my steroid cream and I hope I'm doing everything right."
According to the UK National Health Service website, the cause of lichen sclerosus is unknown. It can be caused by a mistaken attack by the immune system on the skin, causing damage.
It is not contagious, is not caused by infection or lack of personal hygiene. Rubbing or injuring the skin can trigger or worsen the condition.
Credit, Clare Baumhaeur
Clare Baumhaeur, 53, from Kent, began experiencing symptoms when she was five years old.
"I felt itchy and painful, and I was always scolded, obviously I had no idea what was happening."
His symptoms worsened in adulthood, with the appearance of fissures, blisters and sores.
"But you don't see other vulvas, so I had no idea that mine wasn't normal. During that time, I also had eight Pap smears and they never told me anything."
In 2016, Clare suffered a break that didn't heal.
"I was 43 that year, and I had been suffering from this for 38 years. I just couldn't take it anymore."
A GP told Clare she had herpes and should go to a sexual health clinic. She says she was "shocked" as she had been married for 25 years.
She was eventually referred for a biopsy and was diagnosed with lichen sclerosus and vulvar cancer.
'I had never heard of that'
"I had never heard of lichen sclerosus and I also had a cancer I had never heard of, in a place I had never heard of."
"That 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 that moment."
Clare had been in remission from vulvar cancer for seven years when a routine scan revealed a recurrence of the disease, and she underwent surgery three years ago.
In June, a new test detected pre-cancerous cells and she underwent a sixth surgery.
Clare believes that if she had been diagnosed with lichen sclerosus earlier, her cancer could have been diagnosed before it reached stage three.
“I had to have radiotherapy twice and it left me with instantaneous early menopause, lymphedema and nerve damage.”
Monica encourages women who notice any changes in their bodies to keep a journal.
"It's really important that we know our bodies better, that we know what's normal for us in our private parts too, because our vulvas really change."
"If you are being ignored, seek multiple opinions, keep insisting because you don't need to live without answers."
She recommends the Lichen Sclerosus Guide website, which contains information to help patients talk to doctors.
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