I have a condition people are too embarrassed to talk about

ByEmily Holt

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."

'Lonely, horrific time'

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. So I found that really quite difficult, but I always knew that it wasn't right."

That Time of the Month

What is lichen sclerosus? Listen now.

Monica believes there should be more support for those with lichen sclerosus.

"Once you have a diagnosis, you're still necessarily not treated in the manner that you should, I don't even get a checkup," she says.

"I manage it on my own with my steroid cream and hope that I'm doing everything right."

According to the NHS website,, external the cause of lichen sclerosus is unknown. It might be caused by the immune system mistakenly attacking and damaging your skin.

It is not contagious, caused by an infection or by poor personal hygiene. Rubbing or damage to the skin can trigger the condition or make it worse.

Clare Baumhaeur, 53, from Kent first experienced symptoms aged five.

"I was itchy and I was sore, and I was always told off, I wasn't obviously aware what was going on."

Her symptoms worsened into adulthood with tears, blisters and sores.

"But you don't see other vulvas, so I had no idea mine wasn't normal. I'd had in that time eight smear tests as well and nothing was ever said."

In 2016 Clare experienced a tear which did not heal.

"I was 43 that year, having it for 38 years at that point, I just couldn't take it any more."

A GP told Clare she had herpes and to 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 vulval cancer.

'I'd never heard of it'

"I'd never heard of lichen sclerosus and also I had a cancer that I'd ever heard of in a place I'd never heard of.

"That was the first time I heard the word vulva, no health professional had mentioned it, so it was a lot to take in at that time."

Clare had been in remission from vulval cancer for seven years, when a regular check-up revealed a cancer recurrence and she underwent surgery three years ago.

In June another check up found pre-cancerous cells and she had a sixth surgery.

Clare believes if she had been diagnosed with lichen sclerosis earlier, her cancer may have been diagnosed before it got to stage three.

"I had to have radiotherapy twice and that's left me with instant early menopause, lymphoedema and nerve damage."

Monica encourages women experiencing any changes to their body to keep a diary.

"It's really important that we get to know our bodies better, to know what's normal for you in your private parts as well, because actually our vulvas do change.

"If you are being dismissed, get multiple opinions, just keep going back because you don't have to live without answers."

She recommended the Lichen Sclerosus Guide, external which has a diagram and template to help you talk to doctors.