Friday, 17 January 2025
A new online guide has launched to support and empower people with vulval lichen sclerosus (LS), to learn about the condition, access the right treatment and live more comfortably.
The online guide, which has launched on World LS Awareness Day 2025, has been written by expert healthcare professionals and researchers from the University of Bristol, University of Nottingham, East Lancashire Hospitals NHS Trust, Nottingham University Hospitals NHS Trust, and people with vulval LS. It has practical advice and easy-to-use resources to help people with LS live better.
It is estimated that around 1 in 100 women have vulval LS. It can be diagnosed at any age, but it seems to happen most often after the menopause. Nobody knows exactly what causes LS.
The website contains information about symptoms, diagnosis, treatment, and support, and includes videos explaining what happens to the skin in LS, vulval anatomy and self-examination, and how to apply treatment 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 it 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 known as vulval LS.
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.”
One of the guide’s authors, Dr Rosalind Simpson, who is Associate Professor in the Centre of Evidence Based Dermatology at the University of Nottingham, and Consultant Dermatologist at Nottingham University Hospitals said: “Vulval skin conditions are not often talked about and so remain a taboo subject. It’s an embarrassing topic to discuss, let alone consult a health professional with. LS is a hidden skin condition -as others cannot ‘see’ it, many people live with LS in silence. This can be isolating and has a huge impact on psychological health on top of dealing with the day-to-day symptoms. There is a gap in comprehensive, reliable information sources for LS. We have created this LS Guide to fill that hole, and we hope it will be helpful to patients, carers and even health professionals.”
Vulval skin conditions are not often talked about and so remain a taboo subject. It’s an embarrassing topic to discuss, let alone consult a health professional with. LS is a hidden skin condition -as others cannot ‘see’ it, many people live with LS in silence. This can be isolating and has a huge impact on psychological health on top of dealing with the day-to-day symptoms. There is a gap in comprehensive, reliable information sources for LS. We have created this LS Guide to fill that hole, and we hope it will be helpful to patients, carers and even health professionals. 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.”
Dr Sophie Rees, Research Fellow in Qualitative Research in Bristol Medical School: Population Health Sciences (PHS), one of the online guide’s authors, added: “Living with LS can be challenging, as it can affect many aspects of life such as socialising, work, and sex.
“The online guide has been developed following a recent study about women’s experiences of living with vulval LS. 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.”
Dr Caroline Owen, Consultant Dermatologist at East Lancashire Hospitals NHS Trust, and also one of the online guide’s authors, added: “Vulval lichen sclerosus can be really isolating as people often feel embarrassed to disclose or talk about their symptoms with family and friends, we really hope that this guide will reassure and support them.
“We have also included a treatment template that both doctors and patients can download and complete, as well as a video demonstrating the proper application of topical treatments. This is particularly important as there can be confusion and anxiety about the use of topical steroids, which are crucial for effectively treating and managing this condition.”
Common symptoms are 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 which can be devastating.
Doctors and researchers know LS can run in families, and that autoimmune conditions tend to happen more often in people with vulval LS, but for most people there is no obvious cause. It’s a long-term condition with no known cure, but it can be effectively managed with topical corticosteroid treatment.
The development of the online resource was supported by three charities: Wellbeing of Women, the British Society of the Study of Vulval Disease, 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 when she was 43 years old. She had dealt with symptoms of LS since childhood, but had never received a diagnosis, always assuming (and told by healthcare professionals) that her symptoms were caused by thrush.
She is an advocate for people with LS, sharing her story and providing online support groups and awareness pages on social media.
The effects of vulval cancer treatment have had a huge impact on Clare’s life, and she now lives with lymphoedema (swelling) in her legs amongst other challenges. Since receiving her diagnoses, Clare has experienced a recurrence of vulval cancer and VIN (pre-cancerous cells) and underwent further treatment in 2023.
Story credits
More information is available from Rosalind Simpson from the School of Medicine at rosalind.simpson@nottingham.ac.uk
Notes to editors:
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