Monica Thomas experienced intimate itching, soreness, sores and blisters starting in her teens, but doctors initially dismissed her symptoms as thrush. She underwent 28 examinations over six months before receiving a biopsy and being diagnosed with lichen sclerosus, a chronic inflammatory condition that affects the genital area.
Lichen sclerosus causes white patches to form on affected areas and can produce itching, soreness, splitting and tears, according to Dr. Nighat Arif, a GP specializing in women’s health. The condition is lifelong, affects both men and women but is more common in women over 50, and carries a small risk of vulval cancer. It is not contagious or caused by infection or poor hygiene. Research from the University of Bristol estimated the condition affects about 1% of women, though experts believe this is an underestimate due to long delays in diagnosis and cases going undiagnosed throughout people’s lives.
Thomas experienced multiple misdiagnoses before her correct diagnosis, including being given medication for herpes and being told she was too young to have the condition. She reports that doctors’ dismissals significantly impacted her mental health. Dr. Sophie Rees, who contributed to prevalence research, noted that shame, embarrassment and lack of awareness among healthcare professionals contribute to underdiagnosis. Thomas now manages her condition with steroid cream but says she receives limited follow-up care.
Clare Baumhaeur, 53, experienced symptoms starting at age five but was not diagnosed until age 43, after 38 years of symptoms and eight smear tests. Her delayed diagnosis meant that vulval cancer was not identified until it reached stage three, requiring radiotherapy and resulting in early menopause, lymphoedema and nerve damage. She had a cancer recurrence seven years later and underwent a sixth surgery after pre-cancerous cells were detected.
Both women advocate for increased awareness and earlier diagnosis. Thomas recommends that people keep symptom diaries and seek multiple medical opinions when dismissed, while also suggesting resources like the Lichen Sclerosus Guide to facilitate conversations with healthcare providers.
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