This is a leaflet to help patients understand what can be a longstanding and sometimes, distressing condition that affects women of all ages and can sometimes affect men. It can also sometimes affect young children and teenagers.
Lichen sclerosus is an uncommon skin condition. It used to be called lichen sclerosus et atrophicus, but it is often now just called lichen sclerosus. (LIKE-in skler-O-sus) Lichen sclerosus is a chronic inflammatory skin disorder that most commonly affects the vulva (genital skin) of women. Less commonly it affects other areas of the skin, such as the anal area. It can occur at any age but most commonly develops in middle-aged women. It is estimated that lichen sclerosus affects about 1 in 1000 women, but it may be more common than this as some mild cases may go undiagnosed.
The vulva is a woman’s external genital area. It includes two large, hair-covered folds of skin called the labia majora, which surround two thin and delicate folds called the labia minora. The labia majora and labia minora surround the opening of the vagina (birth canal) and the urethra (the tube through which urine is passed). The clitoris is positioned above the vagina and urethra.The anus (opening to the back passage) is separated from the vulva by an area of skin called the perineum.
The symptoms are the same in children and adults. Itching or soreness of the vulval area that persists, inspite of usual treatment for thrush or other infections. Pain may be a feature Splitting of the vulval skin, causing stinging and pain Small, subtle white spots may appear early on. These areas are usually slightly shiny and smooth. As time goes on, the spots develop into bigger patches, and the skin surface becomes thinned and crinkled. More severe cases of lichen sclerosus produce scarring that may cause the inner lips of the vulva to shrink and disappear, the clitoris to become covered with scar tissue, and the opening of the vagina to narrow, sometimes causing urination difficulties and sexual problems Loss of vulval features, labia, clitoris Sometimes, Lichen sclerosus may affect other areas, such as anal area, causing difficulty in opening bowels. It does not affect the vagina or other parts of the female reproductive organs.
The actual cause of this chronic condition is not known, there appears to be a connection between lichen sclerosus and thyroid disease, vitiligo and other auto-immune diseases (1 in 4). There may be a genetic element as well. There may be a history of eczema or psoriasis. It is not possible to get lichen sclerosus through sexual intercourse, it is not a sexually transmitted disease and it is not contagious.
The changes of Lichen sclerosus are not cancer, but in a few people they may, over many years, develop into a type of skin cancer known as squamous cell cancer. This small risk is estimated at 3% (3 women in 100)
The condition should be diagnosed early to allow the correct support and treatment to commence. Although, in some cases, the condition disappears on its own, sometimes in the younger age group, the condition is chronic and there is no permanent cure.
It can take several years and several visits to various health professionals before the diagnosis is considered. This can be very frustrating for the woman considered. However, once your GP suspects it, you may be referred to a specialist, a dermatologist or a gynaecologist with a special interest in vulval conditions. A vulval biopsy, either under a local or a general anaesthetic is needed to confirm the diagnosis. This involves a tiny piece of skin being taken from the affected area which is sent for analysis. The biopsy itself does not hurt, but may be uncomfortable for a few days. You may also have a procedure called vulvoscopy, which involves looking at the affected areas with a magnifying instrument, to allow proper examination and to help in selecting the right area for biopsy. This procedure does not hurt at all.
Some people need no treatment
General Measures: Healthy diet, rich in fruit and vegetables. Use non-soap based washes and emollients Use an emollient (moisturiser) cream such as aqueous cream or similar instead of soap to clean the genital area. This is also soothing. Lubricants may be useful during sex if this is painful. Use Non- Biological washing powders, if needed. Avoid synthetic underclothes and tights. Avoid perfumed toiletries, bubble baths, and perfumes in the vulval area. These may irritate the skin and make symptoms worse. Avoid fabric conditioners Avoid scratching, better to use a cold flannel Avoid tight clothes, which can make the area hot and itchy
Topical steroids: A strong steroid ointment or cream (topical steroid) is the main treatment. Steroids reduce inflammation. It is usual to use the ointment or cream regularly. Keep on with treatment for as long as advised. Irritation tends to ease after two weeks or so, but the skin may take about three months of treatment to look and feel better. The skin may return to normal if lichen sclerosus is diagnosed and treated in its early stages. However, if the appearance of the skin has already changed a lot, the changes may not reverse much with treatment, even though symptoms of itch and soreness are often relieved.
Treatment regime often used: (6 weeks – 12 weeks course)
After the initial regular treatment, you may then only need to use the ointment or cream once or twice every 1-2 weeks to keep symptoms away.
Other treatments Other creams may be used - topical anaesthetics, such as lignocaine jelly Oestrogen creams, under supervision Surgery rarely needed. Sometimes if scarring is severe, this may need to be released.
National Lichen Sclerosus Support Group www.lichensclerosus.org
Information leaflet prepared by Mrs Nitu Bajekal,
Consultant Gynaecologist, Barnet Hospital
( Updated Feb 2009)