I Have a Condition People Are Too Embarrassed to Talk About
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I have a condition people are too embarrassed to talk about
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 worsened, 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 states, "we don't really talk about" gynaecological health as a society, so there is a taboo around speaking about symptoms. Even when in pain, living with discomfort is just as bad.
The 34-year-old from Suffolk was eventually diagnosed with a condition called lichen sclerosus. This lifelong inflammatory condition affects genitals and can cause white patches to form with itching, soreness, splitting, and tears, says Dr Nighat Arif, a GP specializing in women's health.
It is more common in women over 50 and can increase the risk of vulval cancer.
"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 explains on the That Time of the Month podcast.
Research into the prevalence of vulval lichen sclerosus is limited, but a study by the University of Bristol estimated it affects about 1% of women.
Dr Sophie Rees notes, "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."
More research is needed to determine the true prevalence.
Monica suffered significantly from misdiagnoses, which impacted her mental health.
"I didn't know how to go on... with having no answer, it was just a horrific, lonely time," she says.
She was given medication for herpes and even tested for HIV, despite doctors telling her she was "too young" for lichen sclerosus.
"Once you have a diagnosis, you're still necessarily not treated in the manner that you should," Monica believes.
According to the NHS website,...