This report contains detailed descriptions of medical symptoms. Monica Thomas was in her teens when she started experiencing intimate itching and soreness, but despite numerous trips to the doctors it was dismissed as thrush. Her symptoms got worse, with sores and blisters leaving her in constant pain.
"I was bed bound for quite a long time because I couldn't walk," she says. Monica says she was examined 28 times in six months before being offered a biopsy. She says "we don't really talk about" gynaecological health as a society so there is a taboo around speaking about symptoms.
"Even when we go to the doctors, for me, the embarrassment of having to get undressed...with these doctors looking it is embarrassing," she says. "But equally when you're in pain or it's itching and you've got discomfort, living with it is just as bad." The 34-year-old from Suffolk was eventually diagnosed with a condition called lichen sclerosus. The lifelong inflammatory condition affects genitals and can cause white patches to form with itching, soreness, splitting and tears, says Dr Nighat Arif, a GP specialising in women's health.
It affects men and women but is more common in women over 50, external. There is also a small risk of vulval cancer., external "It's very sore to have sexual intercourse, to pass urine and it gets mixed up with sexually transmitted diseases but it's not contagious," she tells BBC Radio 5 Live podcast That Time of the Month. Research into the prevalence of vulval lichen sclerosus is limited but analysis by the University of Bristol of people in the West Midlands and Warwickshire estimated it affects about 1% of women.
Dr Sophie Rees, who helped conduct the research, tells the BBC: "This is almost certainly an underestimate, as we know that there is often a very long delay to diagnosis, and some people probably go their entire lives undiagnosed. "There is unfortunately a lot of shame and embarrassment around seeking help for vulval symptoms, as well as a lack of awareness, even amongst healthcare professionals." She adds: "More research is badly needed into true prevalence." Monica says multiple misdiagnoses had a "significant" impact on her mental health. "I didn't know how to go on... with having no answer, it was just a horrific, lonely time." She was given medication for herpes.
"I was very upset in an appointment with a dermatologist who got quite angry with me because I was like, 'it's not that'. "Then she said that she wanted me to have blood tests for HIV." Doctors told her she was "too young" to have lichen sclerosus. "But sadly, women do have it at all ages, you can have it as a child.
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