talkhealth meets... Rosalind Simpson

Rosalind Simpson noticed there was a gap in knowledge of vulval skin conditions early in her career and has dedicated her career to increasing awareness since. 

Now, she hopes for 'earlier diagnosis, timely treatment, reduced complications and better quality of life for those with lichen sclerosus' via increased research. 

Here, Rosalind answers our questions...

How did you become a dermatologist? Tell me more about your career journey.

I studied medicine at the University of Nottingham and after I qualified as a doctor in 2004, I worked in several different speciality areas as a junior doctor, one of those speciality areas was dermatology. I was struck by the number of different skin problems that can occur on the skin and by the huge impact that skin conditions can have on a person. Dermatology isn’t always that well taught and patients can feel frustrated by their journey to getting the right treatment. The challenge of working out the diagnosis and being able to help people so much in a short space of time with the right treatment was hugely rewarding and this was the reason for wanting to develop in this area of medicine.

Why do you have an interest in women's health? Particularly vulval dermatology. 

Early on in dermatology training, I noticed a gap in knowledge and confidence, even amongst dermatologists, for patients with vulval skin problems. I could see the effects of these conditions on every aspect of patients’ lives – from simple day to day activities, to relationships, to feeling really low and embarrassed about their condition. It was also saddening that some people thought it was their fault and they had done something wrong to cause the vulval problem. Through learning more about vulval conditions and seeing patients regularly, I became able to diagnose and treat effectively, hopefully making a real difference to people’s experience. This then led to developing a more general interest in women’s health, with focus on skin problems which cross over with other specialities such as gynaecology and sexual health. Women’s health issues are often underrepresented (the reason behind the UK government’s Women’s Health Strategy for England which was published in 2022), especially in research. Through my academic role, I want to address this and I’ve been building collaborations to strengthen research in this area.   

Tell me more about lichen sclerosus. 

Lichen Sclerosus (LS) is a long-term skin condition that mainly affects the genital region, although it can appear anywhere on the skin. It is most frequent in women where it affects the vulva (the skin surrounding the vagina). It is believed that at least 1 in 100 women overall have LS . It may affect up to 3 in 100 women over the age of 80. It can also occur in men and children, but less frequently in these groups.  The cause is not fully understood. Autoimmune conditions are more frequent in people with LS, but LS itself has not been proven to be an autoimmune condition. There is also evidence showing an association with urine incontinence, although it is not clear if this is a cause or a consequence of LS. Irritation from urine leakage or wearing incontinence pads or panty liners can make the symptoms worse. What we do know is that LS is not due to an infection – it is not contagious and cannot be spread through contact.

Women and girls often report vulval itching or discomfort as the main symptom form LS, although there are many other symptoms which people may experience such as painful sex, pain on opening bowels/passing urine, burning sensation and dryness of the skin, amongst others. White patches appear on the vulva and around the back passage. These patches may merge into areas of crinkly skin, or thickened areas. Small cuts (fissures) can arise within areas of LS. The appearance of bleeding, or bruising under the skin, may also be present.

LS can cause changes to the anatomy due to scarring from the inflammation. This includes shrinkage of the inner lips (labia minora), sticking together of the inner to the outer lips, fusion of the midline of the inner lips to narrow the vaginal entrance and reduction in movement of the skin surrounding the clitoris. The most serious potential complication is an increased risk of cancer. It is estimated that up to 1 in 20 women with LS will develop a vulval cancer.

For all of these reasons, it’s therefore important to recognise and treat LS as early as possible.

Why is awareness of the condition lacking despite affecting 1 million women in the UK? 

That’s a great question, the exact figures of how many people are affected by LS are not known – 1 million is an estimate. Vulval skin conditions are not well talked about and so remain a taboo subject. It’s an embarrassing topic to discuss, let alone see a health professional about, so you can see why the public often haven’t heard of LS. For health professionals, medical teaching in this area is lacking, historically it’s not been a high priority. Although there are now initiatives to provide teaching opportunities for doctors who train in dermatology, gynaecology and sexual health, to learn about vulval conditions, including LS.  Education in this area is changing, but changes take time to filter through and be implemented.  It’s great to see awareness increasing via social media and through professional societies such as the BSSVD and Wellbeing of Women.

Management of the condition isn't fully understood, why do you think this is? 

Again, I think education and awareness are key here. Many health professionals do manage LS well, but it’s case of getting the diagnosis correct in the first place. If the patient isn’t examined, for example due to time constraints, or if they are having a remote consultation, the symptoms of LS can be mistaken for something else; thrush is a common misdiagnosis in women. Girls with LS can present with constipation or problems with passing urine – again, they may not be examined initially and the diagnosis missed. We know that applying a strong steroid treatment to the affected skin improves symptoms and signs in most people with LS. This improvement usually occurs in the first 3 months of treatment. There is evidence from studies for this. However, some people, doctors included are reluctant and worried about using steroid treatment on vulval skin. This can lead to prescription of a less strong formulation or avoidance completely. These in turn can lead to undertreatment and ongoing symptoms.

There is much less available good quality evidence on how to treat LS if the initial steroid treatments applied to the skin do not work. This reflects LS being under resourced and under researched to date.

You are trying to find out best management practice through the PEARLS trial. Tell me more about this. 

LS is a long-term condition that needs ongoing treatment to manage flares of symptoms. After initial treatment for 3 months with a topical steroid people often become symptom free or have very mild disease, but we don’t know the best way to manage future flares of LS. Some people think that using topical steroid in-between flares, even when there are no symptoms, may reduce symptoms overall. We want to study if using a steroid treatment regularly (e.g. twice a week), even when symptoms are controlled, is better than using steroid cream only during a flare. We will compare how many people in each group experience a LS flare. We will also assess patients to see if scarring (fusion) has worsened during the study. We will ask for permission from patients to check their medical records for a number of years after the study. This will help us to see how many patients in each treatment group develop cancer. We will interview patients to explore how they feel about the study and the different ways of treating LS that we are testing. We will also compare the costs and outcomes of the two treatments used in the study to see if one is better value for money for the NHS. The trial aims to recruit 400 female participants (aged 5 years and older) over a 12 month period. Each participant will be followed up for 24 months.

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Information written by the talkhealth team

Last revised: 7 June 2024
Next review: 7 June 2027