Background: Vulval lichen sclerosus (VLS) is a common condition. Despite this, there is a paucity of research investigating the impact on women's lives. Some women with VLS utilise online forums to discuss their priorities and concerns. This dialogue gives insight into the experiences of women living with VLS.
Methods: We identified the most popular public forums containing discussions between women with VLS. Inductive, thematic analysis was applied to 202 online posts spanning a six-year period.
Results: Five key themes were identified. Theme 1 pertained to difficulties with diagnosis. Women experience frequent delays and misdiagnosis. They report health care professionals (HCPs) with poor knowledge of their condition and some that were dismissive of their symptoms. Upon diagnosis women expressed relief and frustration. Theme 2 related to rationalisation and validation of their experience. Women expressed a desire to know why they were affected, what caused their symptoms and gain reassurance. Theme 3 dealt with women's motivation to control their condition. Women want to know what triggers a flare-up so they can limit their relapses. They want to self-manage their condition and have an active role in partnership with HCPs. Theme 4 related to women sharing and seeking advice from the forums. The lived experiences of other women is valued by fellow sufferers. In particular, women are keen to try other treatments, conventional and alternative. The final theme related to the social repercussions of the condition. Sociocultural factors may prevent women from talking about their condition to friends, family and HCPs. They feel embarrassed by their symptoms. Some women reported relationship breakdown as a repercussion of the disease.
Conclusions: Improving the knowledge of HCPs with regards to VLS may reduce problems with diagnosis. In addition, delivering improved women's health education in schools may reduce the taboo attached to women's health. This may empower women to talk about their condition and seek help sooner. Once diagnosed, clinicians with the appropriate expertise should care for women with VLS. Women should be encouraged to take an active role in managing their condition in partnership with clinicians. Future research priorities include identifying the aetiology, triggers for flare-ups and novel therapies.
Keywords: Health inequalities; Lichen sclerosus; Online forums; Online research; Patient experience; Patient-centred care; Peer support; Self-management; Sexual health; Social isolation; Thematic analysis; Vulval dermatoses; Women’s health.