Lived experience of women with Lichen Sclerosis

Lichen Sclerosis (LS) is an often unrecognized and unknown life altering condition affecting the anal and genital areas of women as well as some uncircumcised men. Few health care providers (HCPs) are aware of its existence and even fewer women have ever heard of it. In addition, those who are diagnosed with it are often too embarrassed to openly discuss such a shocking topic. Women with LS are often misdiagnosed with chronic yeast and urinary tract infections as their female architecture disappears and their quality of life and ability to participate drastically changes. HCPs who are knowledgeable about LS often have a narrow/limited focus of care that focuses on women's sexual functioning without considering its impact on participation and overall quality of life. The purpose of this paper is to uncover the mask of this condition and its impact on participation and social justice for women. The goals of this paper are to increase awareness of LS for women's health practitioners and policy makers, improve the quality of lives of women with LS, increase accurate and early diagnosis and treatment, and advocate for policies that support these goals. Findings from a phenomenological qualitative research study with women affected by LS will be shared. Understanding the lived experiences of women with LS will shed light on the actual impact of such a devastating condition on participation and social justice issues on this emerging yet currently hidden public health phenomenon.