August 2022

Lichen sclerosus and urinary incontinence in females

Dr Lisa Kirby is a Consultant Dermatologist and a Clinical Research Fellow in Dermatology at the Centre of Evidence Based Dermatology, University of Nottingham. In 2019 she was awarded a British Skin Foundation Small Grant Award entitled “Is urinary incontinence associated with lichen sclerosus in females? A systematic review and cross-sectional study”.  This research was carried out alongside her dermatology training and completed in 2021. It has been published and presented internationally. Here Lisa explains her findings. 

Above image: Dr Lisa Kirby

What is lichen sclerosus? 

Lichen sclerosus (LS) is a long-term vulval (genital) skin condition which affects up to 3% of women.  Even though it is a common condition, LS is poorly understood and often under-recognised. LS affects men and children too but is thought to be less common in these groups. LS causes inflammation of the vulva which leads to itching and soreness. It often causes changes in anatomy due to sticking together of the skin (‘scarring’). These changes can cause problems with having sex and going to the toilet. Having LS also increases the risk of developing vulval cancer twenty-fold, compared to the general population; this is a big worry for women who have LS. Women tell us that having LS affects all aspects of their lives and can have a serious psychological impact.

This was more than just an itch – this was severe sleep deprivation. At that point I would have tried anything to help. And no one tells you it’s forever...

- Patient & public involvement (PPI) member 

Early on in my dermatology career, I met women with severe LS and became aware of the devastating impact of this neglected condition. This is what drives me to do research in LS – we need to understand this condition so that we can identify it better, modify potential risk factors, improve treatment options and deliver better care.

Urine as a potential trigger factor for LS

Understanding factors that may trigger or worsen LS is a key area of research. It was prioritised by the LS Priority Setting Partnership in 2018, a process that involved nearly 1000 people coming together to decide what is important for future research in LS. In men, we know that contact of the genital skin with droplets of urine under the foreskin is a trigger for developing LS. It is likely that the same applies to women - contact of the vulval skin with urine in women who are incontinent (even just a little) could be a trigger for developing LS. We know that around 35% of all women have some urinary incontinence (UI), but we do not know how common it is in women with LS. 

The findings

The first part of this study looked at all the existing evidence for UI in LS; this is known as a systematic review. There were a small number of existing studies. When the results were combined, UI was present in 35% of women with LS. This is no different to the general population. The studies were low in quality; therefore, we cannot draw strong conclusions from this, but it is useful to understand the existing evidence and find out where the gaps are. 

The second part of this study involved analysing a clinical database of 384 women attending a specialist vulval clinic in the UK. Detailed information was entered at their first consultation and the women completed a questionnaire about UI. I used this data to find out how common UI was among women with LS compared to women with other genital conditions. 

UI  was present in 63% of women with LS, compared to 34% of women without LS. The risk of having UI was 2.5-times higher in women with LS.  This study provides important evidence of a link between UI and vulval LS in women. It is not clear whether incontinence or LS happens first, and long-term follow-up studies (known as cohort studies) are needed to understand this link.  

Impact of this award 

This funding allowed me to do this research alongside my dermatology training, supported by my supervisors Caroline Owen, Rosalind Simpson and Sonia Gran. It has given me so many opportunities; I have worked with brilliant clinicians and researchers who are passionate about women’s health. The findings have been published in two dermatology journals and presented at international conferences. I was also awarded a travel bursary through the NIHR (National Institute for Health Research) and British Association of Dermatologists. The skills, collaborations and experience I gained through this project have undoubtedly contributed towards my future career as a vulval disease expert with an interest in clinical research.

Dr Lisa Kirby, Centre of Evidence Based Dermatology, University of Nottingham.

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