Online resource launched to empower people with vulval lichen sclerosus

Online resource launched to empower people with vulval lichen sclerosus

A new online guide has been launched to support and empower people with vulval lichen sclerosus (LS) to learn about the condition, access the right treatment and live more comfortably. It is estimated that around 1 in 100 women in the UK have vulval LS. It can be diagnosed at any age, but it seems to happen most often after menopause. Nobody knows exactly what causes LS.

The online guide [www.lichensclerosusguide.org.uk] Written by expert health professionals and researchers from the University of Bristol, the University of Nottingham, East Lancashire Hospitals NHS Trust, the University of Nottingham University NHS Trust and people with vulval.

The website, launched on World LS Awareness Day 2025, provides information on symptoms, diagnosis, treatment and support and includes videos explaining what happens to the skin in LS, vulval anatomy and self-examination, and how treatment can be applied to the vulva.

There is also information for healthcare professionals and carers and partners of people with vulval LS.

LS is a skin condition that can affect anyone at any age, but most commonly affects women. Although it can appear anywhere, it mainly affects the genitals and in women or those assigned female at birth, this is referred to as vulval LS.

Clare Baumhauer was diagnosed with both LS and vulval cancer at the same appointment in her forties. She had dealt with symptoms of LS since childhood but had never received a diagnosis, always assuming or being told by health professionals that Thrush was causing her symptoms.

Clare, an advocate for people with LS, who spoke 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 my experience."

Dr. Sophie Rees, Research Fellow in Qualitative Research at Bristol Medical School: Population Health Sciences (PHS) and one of the authors of the online guide, Work and Sex.

"The online guide was developed following a recent study into women's experiences with vulval LS. Participants often described a lack of consistent, reliable and clear information, as well as poor awareness not only among the general public but also among medical professionals."

Vulval lichen sclerosus can be really isolating as people are often embarrassed to disclose or talk about their symptoms with family and friends. We really hope this guide reassures and supports you.

We have also included a treatment template that both physicians and patients can download and complete, as well as a video demonstrating the proper application of the topical treatments. This is particularly important because the use of topical steroids can cause confusion and anxiety, which are critical to the effective treatment and management of this condition. “

Dr. Caroline Owen, Consultant Dermatologist at East Lancashire Hospitals NHS Trust and one of the authors of the online guide

Common symptoms include intense itching, pain and burning. In the long term, if not well controlled, LS can lead to irreversible anatomical changes such as fusion of the labia or clitoral hood and the development of scar tissue, which can cause pain and tearing and impact on self-identity. The condition also carries an increased risk of vulval cancer, a diagnosis that can be devastating.

Doctors and researchers know that LS can run in families and that autoimmune diseases are more common in people with vulval LS, but for most people there is no obvious cause. It is a long-term condition with no known cure but can be effectively treated with topical corticosteroid treatment.

The development of the online resource was supported by three charities: Women's Wellbeing, the British Society for the Study of Vulval Diseases and the British Association of Dermatologists.

The LS guide can be accessed at: www.lichensclerosusguide.org.uk

Clare's story

Clare Baumhauer was diagnosed with both LS and vulval cancer at the same appointment at age 43. She had dealt with symptoms of LS since childhood but never received a diagnosis, always assuming (and being told by health professionals) that her symptoms were caused by Thrush.

She is an advocate for people with LD, sharing her story and providing online support groups and social media awareness pages.

The effects of vulval cancer treatment have had a major impact on Clare's life and she now lives with lymphedema (swelling) in her legs, among other challenges. Since her diagnoses, Clare has experienced a recurrence of vulval cancer and Vin (pre-cancerous cells) and continued treatment in 2023.

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