A Qualitative Exploration of Women's Experiences of Living with Chronic Vulvar Dermatoses

Background Many vulvar dermatoses (VDs) are chronic and cannot be "cured," thus affected women must learn to live with the impact of the disease, and its treatment, on their quality of life.Aim To qualitatively investigate the impact of VDs on women's quality of life through firsthand accounts.Methods 12 women, 7 with lichen sclerosus and 5 with erosive vulvovaginal lichen planus recruited from a vulvar disease clinic participated in in-depth, exploratory interviews. Scripts were analyzed by applying a thematic network. The following steps were used: (1) coding the text, (2) development of descriptive themes, and (3) generation of thematic networks.Outcomes The main outcome explored was the narrative experiences of women living with VDs.Results A global theme of suffering emerged. Themes associated with this suffering were organized under the themes of isolation, interference, and grieving. Women felt isolated because they felt unable to talk about their suffering; experienced a lack of external validation and support; and felt different as individuals, women, and sexual beings. Most women expressed negative views of their genitalia. Women spoke of the VDs, and its management, as interfering with thoughts, activities, and sex life. Symptoms were described as all-encompassing. Women spoke about limiting and/or avoiding daily activities and, in particular, sexual activities. Women described diminished sexual pleasure and experienced loss in their intimate relationships. Women described an ongoing grieving process; anger and sadness over the loss of their former healthy self; the burden of ongoing treatment; and attempts to cope and accept their current condition.Clinical implications The findings suggest that assessment of women with VDs should include a detailed history of the impact of the VDs on women's psychological and sexual health.Strengths and Limitations A strength of this study is that we openly explored the lived experiences of women who had been clinically diagnosed with vulvar lichen sclerosus and erosive vulvovaginal lichen planus. A limitation is that the findings may not represent the experience of women living with VDs who do not wish to discuss their VDs or who are undiagnosed, untreated, and/or treated by other health-care providers.Conclusions Women described profound impact of VDs on psychological and sexual health.