Women Share Personal Experiences with Lichen Sclerosus, Highlighting Diagnostic Delays and Stigma

Monica Thomas began experiencing intimate itching and soreness in her teens, symptoms that were repeatedly dismissed as thrush despite their worsening severity. Her condition progressed, causing sores and blisters that left her in constant pain, at one point rendering her bedridden for an extended period. After approximately 28 examinations in six months, she was finally offered a biopsy.

Thomas, now 34, ultimately received a diagnosis of lichen sclerosus, a lifelong inflammatory condition that affects the genitals. According to Dr. Nighat Arif, a general practitioner specializing in women's health, the condition can cause white patches to form, accompanied by itching, soreness, splitting, and tears. It affects both men and women but is more prevalent in women over 50 and carries a small risk of vulvar cancer. Dr. Arif noted that the condition can be mistaken for sexually transmitted diseases, though it is not contagious.

Research on the prevalence of vulvar lichen sclerosus is limited, but a University of Bristol analysis estimated it affects about 1% of women. Dr. Sophie Rees, involved in the research, suggested this figure is likely an underestimate due to frequent diagnostic delays and some individuals remaining undiagnosed throughout their lives. She highlighted societal shame, embarrassment surrounding vulvar symptoms, and a lack of awareness, even among some healthcare professionals, as significant barriers to seeking help.

Thomas described the impact of her multiple misdiagnoses on her mental health, calling it a "horrific, lonely time" without an answer. She recalled being prescribed medication for herpes and facing a dermatologist who became upset when Thomas insisted it was not her condition. She was also suggested to undergo blood tests for HIV. Doctors also told her she was "too young" for lichen sclerosus, despite it affecting women of all ages, including children.

Clare Baumhaeur, 53, began experiencing itching and soreness at age five, often being reprimanded for it. Her symptoms intensified in adulthood, leading to tears, blisters, and sores. Baumhaeur noted that she had no idea her condition was abnormal as she rarely saw other vulvas and underwent eight smear tests without any concerns being raised. In 2016, she experienced a non-healing tear, prompting her to seek further medical attention after 38 years of symptoms. A general practitioner initially suggested herpes, leading to a referral to a sexual health clinic. This referral eventually led to a biopsy, resulting in a diagnosis of lichen sclerosus and vulvar cancer.

"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," Baumhaeur stated. She noted that the term "vulva" was unfamiliar to her until then, as no health professional had used the term. Baumhaeur has undergone multiple surgeries for vulvar cancer, including treatment for pre-cancerous cells. She believes that an earlier diagnosis of lichen sclerosus might have prevented her cancer from reaching stage three. The treatments have resulted in early menopause, lymphedema, and nerve damage.

Both women emphasized the importance of societal openness regarding gynecological health. Thomas pointed out the stigma associated with discussing symptoms, even when seeking medical help. She also noted a lack of ongoing support after diagnosis, managing her condition with steroid cream and hoping she is using it correctly. She encourages women experiencing any bodily changes to keep a diary and seek multiple opinions if dismissed by healthcare providers.

The cause of lichen sclerosus is unknown, but it is thought to be an autoimmune condition where the immune system mistakenly attacks healthy skin. It is not contagious, nor is it caused by infection or poor hygiene, although skin damage can exacerbate the condition. Resources like the Lichen Sclerosus Guide offer diagrams and templates to aid in discussions with doctors.