Conversations between women with vulval lichen sclerosus: a thematic analysis of online forums

Abstract

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.

“Worse Than Disappointing”: Prediagnostic Health Care Challenges of Women With Inflammatory Vulvar Dermatoses

“…30,31 Participant embarrassment may also be influenced by societal stigma and insufficient knowledge of reproductive anatomy. 14 Other women delayed care because of intensified feelings of discomfort with HCPs from prior negative experiences or trauma, contributing to perceptions of limited efficacy of the health care system. Participant responses necessitate improved education aimed to destigmatize vulvovaginal health and reduce patient embarrassment toward their genitals.…”

Lived experience of medical management in recurrent vulvovaginal candidiasis: a qualitative study of an uncertain journey

“…Our findings highlight an extended timeframe to the diagnosis of up to three -years. Delay in diagnosis is commonly reported in women's reproductive health disorders like endometriosis and other vulval and genital related disorders such as Lichen sclerosis [6,22]. Reasons for delay in diagnosis include non-specific and overlapping symptoms with other gynaecologic, urologic and gastrointestinal disorders, similar to RVVC [3,6,23] and isattributed with significant impacts on psychological wellbeing [6,22].…”

“…Delay in diagnosis is commonly reported in women's reproductive health disorders like endometriosis and other vulval and genital related disorders such as Lichen sclerosis [6,22]. Reasons for delay in diagnosis include non-specific and overlapping symptoms with other gynaecologic, urologic and gastrointestinal disorders, similar to RVVC [3,6,23] and isattributed with significant impacts on psychological wellbeing [6,22]. Experiences shared by study participants identify a psychological impact from a lack of understanding by HCPs of RVVC which contributes to diagnostic delay and ineffective treatment.…”

“…Idiopathic RVVC occurs in otherwise well individuals with no significant identifiable triggers such as antibiotic use or metabolic disorder [4]. Current estimates indicate that 75% of all women will develop VVC in their lifetime, with around 5-10% of women experiencing RVVC Bradfield Strydom et al BMC Women's Health (2022) 22:384 [5]. There has been no substantial reduction in lifetime annual prevalence rates of RVVC in the past 30 years despite advances in drug development and the introduction of long-term azole treatment.…”

Genital Self-Image, Sexual Function, and Quality of Life Among Individuals with Vulvar and Non-Vulvar Inflammatory Dermatoses

“…In people with VID, an aversion to genital examinations by healthcare providers could lead to significant delays in seeking care. Embarrassment or shame with healthcare provider interactions has been identified as a barrier to care in some women with VID and remains a concern for this population (Bentham et al, 2021 ; Rivera et al, 2022 ; Wehbe‐Alamah et al, 2012 ).…”