Lichen sclerosus is a long-term skin condition that most commonly affects women over 50. When it affects the genitals, it is known as vulval lichen sclerosus, but it is not contagious and cannot be spread through sex.

Common symptoms are intense itching, pain, and burning. In the long-term, if not well controlled by topical corticosteroid treatment, the condition can lead to irreversible changes to the labia and clitoris and the development of scar tissue, which can cause pain and tearing. The condition also carries a heightened risk of vulval cancer.

The website – which was written by doctors, researchers and, most importantly people with vulval lichen sclerosus – is full of information, practical advice and easy-to-use resources to help women with the condition learn more and live better.  There is also information for healthcare professionals and carers and partners of people with vulval with the condition.

Janet Lindsay, Chief Executive of Wellbeing of Women said: “We are delighted to have co-funded this vital online guide for women with vulval lichen sclerosus. It’s so important that women have easy access to evidence-based information. Not only to to help them make informed decisions about their health and improve their quality of life, but also to tackle the stigma that we know is so prevalent in women’s health.”

Clare Baumhauer was diagnosed with both LS and vulval cancer at the same appointment in her 40s. She had dealt with symptoms of LS since childhood, but had never received a diagnosis, always assuming, or told by healthcare professionals, that thrush caused her symptoms.

Clare, an advocate for people with LS, speaking about the new online guide, said: “I believe that sharing information and improving understanding about vulval LS, and vulval conditions in general, could save others from going through my experience.”

The online guide was created with an education funding grant by Dr Sophie Rees.

Dr Sophie Rees, said: “Living with lichen sclerosus can be challenging, as it can affect many aspects of life such as socialising, work, and relationships and intimacy.

“The online guide has been developed following a recent study about women’s experiences of living with vulval lichen sclerosus. Participants often described a lack of consistent, reliable, and clear information, as well as poor awareness amongst not only the general public but also healthcare professionals.”

Wellbeing of Women funded this project with the British Society of the Study of Vulval Disease, and the British Association of Dermatologists.