Understanding the impact of life with vulval lichen sclerosus

Short abstract

Linked Article: Arnold et al. Br J Dermatol 2022; 187:909–918.

Vulval lichen sclerosis (VLS) is a chronic inflammatory condition of the anogenital skin with a preponderance in female patients. While prevalent in up to 3% of adult women, it remains an under‐researched condition with limited understanding of its impact on quality of life. Traditional clinical guidance on vulval skin conditions, including lichen sclerosus from the British Association for Sexual Health and HIV ¹ and the British Association of Dermatologists, ² tends to focus on the clinical management and premalignant risk, with less emphasis on the psychosexual impact.

While the current literature on VLS is quantitative, Arnold et al. use a qualitative approach, which provides an in‐depth exploration of the impact of VLS on the lives of individuals. ³ As reported in this issue of the BJD, 20 semistructured interviews were assessed to deepen understanding of the impact of VLS on an individual’s quality of life. Thus, deficiencies in current clinical practice were identified to help healthcare professionals more efficiently treat and support people with VLS.

Firstly, the study reports that current healthcare is inadequate for people with VLS; delayed diagnosis, misdiagnosis and dismissal of concerns were key themes experienced by participants. The lack of timely diagnosis leads to patient frustration, fracturing of trust in healthcare professionals and delays in starting treatment with ultrapotent topical steroids. ² The authors urge healthcare professionals to consider the diagnosis of VLS and, importantly, to perform a vulval examination when vulval symptoms are reported. Almost 20% of those with a diagnosis of VLS followed up in primary care report not being examined despite being treated with ultrapotent topical steroids. ⁴

Secondly, the authors highlight the psychological impact of VLS: loss of identity, loneliness secondary to lack of awareness, and stigma around open discussion of genital conditions. Other studies have reported that a diagnosis of a vulval condition negatively affects mental wellbeing in up to 89% of participants, with over one‐fifth having considered self‐harm or suicide due to their condition. ⁵ Well‐moderated support groups can be an invaluable source of assistance in long‐term conditions.

It is important to comment that these findings are subject to selection bias, as respondents were recruited from social media and online support groups. Participants may have higher levels of anxiety about their condition or be unhappy with the current healthcare they have received. Despite this, it is clear that vulval LS can have a profound impact on quality of life. The future provision of care must focus on healthcare professional and public awareness to improve diagnosis, a holistic approach to sensitively support patients with self‐management, and psychosocial support and societal interventions to address the stigma associated with conditions of the female genitalia.