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To mark the 2025 World Lichen Sclerosus Awareness Day, British healthcare experts have released an online guide featuring comprehensive practical advice on this condition.
An Online Resource to Support Women with Vulval Lichen Sclerosus
The new guide is designed to help women with vulval lichen sclerosus (LS). Its goal is to empower women with this condition by providing timely information, access to competent treatment, and a better quality of life.
Developed by medical specialists and researchers in collaboration with LS patients, the guide offers practical advice and user-friendly resources. It includes information on symptoms, diagnosis, treatment options, and support, as well as videos explaining skin changes in LS, vulval anatomy, self-examination techniques, and proper application of treatment methods.
Additionally, the website provides resources for healthcare professionals, caregivers, and partners of individuals with LS. Dermatologist and Associate Professor at the University of Nottingham, Rosalind Simpson, emphasizes the need for a comprehensive approach. She notes that vulval skin conditions remain a taboo topic, often leading women to delay seeking specialist care.
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.
Dr. Rosalind Simpson, one of the guide’s authors
What is Lichen Sclerosus?
Lichen sclerosus is a chronic skin condition that primarily affects the genital and anal areas. It is characterized by itchy, painful patches, skin discoloration, and thinning. Although LS can occur at any age and impact individuals of all genders, it is most commonly diagnosed in postmenopausal women.
The exact cause of LS remains unknown. Potential contributing factors include autoimmune disorders, genetic predisposition, hormonal changes, and previous skin injuries.
Common symptoms include intense itching, pain, and burning in affected areas. Sexual activity can become extremely uncomfortable, leading many women with LS to avoid it altogether. If left untreated, LS can cause irreversible changes, such as fusion of the labia or clitoral hood and the development of scar tissue, leading to pain, tearing, and identity-related concerns.
Moreover, LS increases the risk of vulval cancer, making early diagnosis and treatment essential for preventing complications. While there is no definitive cure, a qualified specialist can prescribe appropriate therapy to halt disease progression.
Global Prevalence and Challenges
Assessing the global prevalence of LS is challenging due to underreporting and misdiagnosis. Studies estimate that approximately 114 out of every 1,000 women are affected by LS. However, these figures are likely underestimated due to asymptomatic cases and low awareness.
In India, the prevalence of LS has been estimated at 7.8%. However, due to symptom overlap with other conditions, such as candidiasis, LS is frequently misdiagnosed. This leads to delays in appropriate treatment and an increased risk of complications.
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. Sophie Rees, one of the guide’s authors, Bristol Medical School
Personal Experiences and Advocacy
Clare Baumhauer, diagnosed with both LS and vulval cancer at age 40, had experienced symptoms since childhood. However, she believed she had a yeast infection and conveyed this to doctors, who misdiagnosed her condition for years.
I believe that sharing information and improving understanding about vulval LS, and vulval conditions in general, could save others from going through my experience.
Clare Baumhauer
The effects of cancer treatment significantly impacted Clare’s life, especially following a recurrence in 2023. Now an advocate for women with LS, she shares her story and runs online support groups and informational social media pages.
It is essential to undergo timely and regular examinations, particularly after age 40. Experienced specialists at the Lior Medical Center can help establish an accurate diagnosis and recommend appropriate treatment. For more details or to schedule an appointment, call +380 73 200 6198 or contact this number via Telegram.
