Living with vulval lichen sclerosus: a qualitative interview study

Abstract

Background Vulval lichen sclerosus (VLS) is a chronic inflammatory condition predominantly affecting the anogenital skin. Symptoms can be distressing and affect quality of life and everyday activities. Very little research has been undertaken to explore the experience of living with VLS from the perspective of people with the condition. Objectives To understand individuals’ experiences of VLS and its impact on their lives. Participants and methods Semi‐structured remote (telephone or video) interviews were conducted with a purposive sample of 20 women living in the UK with VLS recruited via online support groups and social media. Data collection and analysis was informed by social constructionist grounded theory, using a constant comparison method. Results We developed three themes to interpret the experience of living with VLS: missed opportunities (participants experienced delayed diagnosis, lack of information and disempowering encounters with healthcare professionals); learning to live with a long‐term condition (the amount of work involved in learning how to self‐manage the disease and the impact on everyday life); a secret life (experiences of the condition were often shrouded in secrecy, and there was stigma associated with a vulval skin condition resulting in them feeling isolated and lonely). Conclusions Patients attending healthcare appointments with vulval complaints should be examined and LS should be considered as a diagnosis. Healthcare professionals’ awareness and knowledge of VLS needs to be improved and they should avoid language which is blaming or minimizing of patients’ experiences. VLS is a chronic condition and patients need to be supported in self‐management. Support groups may be a source of support and information but can also be challenging when hearing others’ difficult experiences. Wider public health educational activities are needed to change societal attitudes towards female genitals and tackle the stigma around vulval conditions. What is already known about this topic? Vulval lichen sclerosus (VLS) can have a profound impact on quality of life and self‐identity but is relatively underexplored from the perspective of those living with the condition. What does this study add? In‐depth findings about the experiences of living with VLS including ongoing issues with timely diagnosis, learning to live with a long‐term condition and the secrecy and stigma about the condition. The needs of women with symptoms of and diagnoses of VLS are not being met sufficiently by the healthcare system. What are the clinical implications of this work? Healthcare professionals should consider addressing knowledge gaps in vulval conditions including VLS to prevent delayed diagnosis and avoid the use of certain terminology which can minimize patients’ experiences. Patients with vulval complaints should be examined and LS should be considered as a diagnosis. Regular follow‐up would reflect its chronic nature and could provide patients with reassurance and confidence in self‐management. Wid...

Female genital lichen sclerosus is connected with a higher depression rate, decreased sexual quality of life and diminished work productivity

“…Furthermore, depression was found to be connected with lower sexual quality of life [ 15 ]. In a qualitative interview study vulvar lichen sclerosus was described as a high maintenance disease that caused numerous changes in patients’ lives [ 29 ]. This illustrates the complexity of the disease and challenges with its management.…”

“…Qualitative studies concerning vulvar dermatosis showed that there is still a lot od secrecy and stigma around vulvar diseases. Women often complained about shame and loneliness, lack of information and support [ 29 , 36 ].…”

Attitudes Toward Proactive Topical Corticosteroid Use Among Women With Vulval Lichen Sclerosus

“…It typically causes intense pruritus, fissures, and dyspareunia, and untreated can lead to malignancy and progressive changes to vulval architecture. Vulval lichen sclerosus can have a serious impact on quality of life, including loss of self-identity, shame, and stigma 4–7 . First-line treatment for VLS is ultrapotent topical corticosteroids (TCSs) which, in most cases, relieves symptoms and reverses skin color to normal 1,2,8 .…”

Understanding the impact of life with vulval lichen sclerosus

“…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.…”

“…Vanitha Sivalingam iD 1,2 and Kajal Tamber iD 3 1 The University of Manchester, Division of Cancer Sciences, Manchester Academic Health Science Centre, Manchester, UK; 2 The Christie NHS Foundation Trust, Department of Surgery, Manchester, UK and 3 Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK Email: vanitha.sivalingam@manchester.ac.uk Conflicts of interest: the authors declare they have no conflicts of interest.…”