Silent no more! The lived experiences of women with lichen sclerosis

Abstract

Purpose: Lichen Sclerosis (LS) is an often unrecognized and misdiagnosed chronic inflammatory skin condition of the anogenital area that affects quality of life, bringing severe discomfort and distress to affected men, women, and children. The purpose of this qualitative study is to explore the lived experiences of women with LS.

Data sources: Content analysis was conducted of data obtained from three public online forums/blogs used by women with LS. A total of 527 postings/entries were analyzed for patterns and themes by four researchers.

Conclusions: Five core themes emerged as a result of this study, revealing feelings of frustration and despair stemming from healthcare providers' lack of knowledge in relation to Lichen Sclerosis, often leading to misdiagnosis, prolonged suffering, and an altered quality of life.

Implications for practice: Knowledgeable healthcare providers and additional research into the cause, treatment, and cure of Lichen Sclerosis are needed. Advance-practice nurses stand to play an important role in the areas of education, research, policy making, and clinical practice to advocate for and empower women with LS.