Barriers to Timely Diagnosis of Vulvar Lichen Sclerosus: A Patient-Centered Analysis of Diagnostic Delays

Vulvar lichen sclerosus (VLS) is a chronic inflammatory dermatosis of the genital area which causes pruritus, pain, and skin changes and which may progress to squamous cell carcinoma. Diagnosis occurs, on average, 4.6 years after symptom onset, impacting quality of life. This study explores factors contributing to diagnostic delay. An electronic survey was distributed via the r/lichensclerosus subreddit and the Lichen Sclerosus Support Group on Facebook. Adult, English-speaking patients with a reported physician's diagnosis of VLS were included. We received 82 eligible responses. All participants (100%) experienced symptoms before diagnosis, and 87.8% sought medical care. Many participants (67.9%) felt that time until their diagnosis was too long. Vulvar itching was the most common symptom (86.6%), and those with itching were 7.6 times more likely than those with other symptoms to seek care (p = 0.04). Common reasons for delaying care included embarrassment (43.9%), believing symptoms were normal (43.9%), shame (24.6%), fear of physician visits (21.1%), and doubt in physicians' ability to diagnose/treat (21.1%).Vaginal candidiasis was the most frequently reported initial misdiagnosis (44.9%). Interestingly, women reporting pain with sex were 9.8 times more likely to be misdiagnosed compared to other symptoms. This study defines varied barriers to timely VLS diagnosis, suggesting the need for multi-faceted interventions to reduce delays.