Patient experiences of living with vulval lichen sclerosus

Vulval lichen sclerosus (VLS) is a chronic inflammatory condition mostly affecting anogenital skin. Symptoms of VLS can be distressing and can have a huge impact on everyday life. Despite this there is very little research exploring the experiences of people living with the condition.

The aim of the study was to understand how VLS has an impact on everyday life and to understand the experiences of those with the condition in greater depth. To do this we recruited participants via support groups and social media. We carried out interviews with 20 women (over the telephone or by video call) with VLS living in the UK, and asked them questions about how the condition affects their life.

Three main themes and some related subthemes emerged from the interviews with these women. The first theme was missed opportunities: including problems with getting a diagnosis, being dismissed by doctors or healthcare professionals, lack of knowledge and lack of information. The second theme related to learning to live with a long-term condition: including the emotions they felt getting a diagnosis, finding information from the internet or support groups, deciding when and how often to use their steroid treatment, and discovering it can take a lot of work to self-manage VLS. The third theme we called ‘a secret life’ and included: finding that it is hard to talk to others about VLS, feeling lonely or isolated and changes to their body.

Our findings suggest that people visiting a healthcare professional with vulval problems should be examined and VLS should be considered as a diagnosis. Importantly, patients with VLS need support and better education is necessary to change attitudes towards female genital health.