"Worse Than Disappointing": Prediagnostic Health Care Challenges of Women With Inflammatory Vulvar Dermatoses

Abstract

Objective: The purpose of this study was to investigate challenges women face before inflammatory vulvar dermatosis diagnosis to guide interventions for improving time to diagnosis and health care experiences.

Materials and methods: The present analysis was part of a larger study exploring sexual health and quality of life of women with vulvar and nonvulvar inflammatory dermatoses, evaluated via a 20-minute web-based survey. One open-response item asked participants to "briefly describe any challenges you faced with regards to health care or health care providers in the time when you were seeking a diagnosis"; this item informed the present study. Eligible participants were women older than 18 years, living in the United States, with diagnosis of an inflammatory vulvar dermatosis persisting at least 1 month. Participants (n = 118) had a mean age of 46.55 ± 15.35 years, and 64% (n = 75) had lichen sclerosus.

Results: Provider-based challenges consisted of insensitive communication and ascribing physical symptoms to mental health issues, self-harm, or other factors. System-based challenges included confusing referral networks, limited specialist access, and widespread lack of provider education. Personal challenges for participants seeking care included feelings of embarrassment and reduced health care efficacy. Challenges led to emotional response and impact for participants, characterized by negative (e.g., distrust in the medical system) or positive (e.g., self-advocacy efforts, strong social media communities) outcomes.

Conclusions: Findings provide unique insights into the challenges women experience before inflammatory vulvar dermatosis diagnosis. This study creates new knowledge exploring the diagnostic journey accompanying inflammatory vulvar dermatoses and contributes practically to clinical and research needs of this understudied population.