Vulval lichen sclerosus in girls

This leaflet is designed for young people who have been diagnosed with vulval lichen sclerosus to help them and their parents/guardians to understand the condition, its symptoms and treatment.

What is lichen sclerosus?

Lichen sclerosus (LS) is a chronic inflammatory condition which mainly affects skin of the genital (vulval) area and around the anus. The cause is not known but it is thought to be an auto-immune condition where the body’s immune system damages healthy cells. It may be more common if there are other auto-immune conditions within in the family, including thyroid disease, alopecia areata (which most commonly causes patches of hair loss), and vitiligo (which is a condition that causes patchy loss of pigment in the skin).

Lichen sclerosus occurs most commonly in older women and in children before puberty.

What are the symptoms?

Some children have no symptoms, but many complain of itching in the vulval (outer genital) area and/or anal (around the bottom) area, which may be enough to disturb sleep. There are often white patches, with red or purplish bruise-like areas. There may also be soreness or burning, particularly if there are small breaks in the skin from scratching. This can cause constipation (difficulty pooing) and there may also be scarring. Skin changes do not involve the vagina.

How is lichen sclerosus treated?

Treatment aims are to settle symptoms (such as itch and soreness) in the affected area and prevent development of further skin changes. If there is already scarring, this may not clear, but can improve.

The most effective treatment is a very strong steroid ointment called clobetasol propionate ointment. At the start of treatment, this should be used for a full 12 weeks even if the symptoms improve. A pea-sized amount of ointment is usually the right amount to treat the involved area. Your dermatologist will tell you where to apply it and how frequently (usually every day for one month, then every second day for one month and then twice weekly for one month).

Younger children will need help from their parents to apply the treatment to the right area.). Although this treatment uses a very strong steroid, it is a tried and tested treatment that we know is safe and effective for LS in children and young people. Using a weaker steroid cream or stopping treatment too early could stop the treatment from working.

It is very common for LS to flare up again over time, even after treatment. When this happens, you will need to use your steroid ointment again for a short period (usually a week) to control the symptoms. Many children and young people find that using a steroid ointment regularly (one to two times a week) for the first one to two years even when there are no symptoms can reduce the number of flares overall.

Skin irritation may worsen LS in the affected area and should be avoided by following the steps below:

• Wash using a bland moisturiser instead of soap, or just warm water.
• Avoid using bubble bath.
• Use shampoo in the shower or at the end of a bath to minimise the amount of time it is in contact with the vulval skin.
• Avoid tight clothing such as jeans and leotards, and wear loose cotton knickers.
• Avoid spending long times in wet swimming costumes.
• Riding a bicycle or a horse may worsen symptoms.

What happens long-term?

Lichen sclerosus improves for some children and young people around puberty, but for others it can persist into adulthood. Flare-ups will continue to need treatment with the aim of being symptom-free.

If treated, LS should not lead to problems with periods, sexual intercourse, or the ability to have children.

For adults with vulval LS, there is a small risk of a kind of genital skin cancer; this will be discussed with those who have LS in adulthood.

Further information

• British Association of Dermatologists: Care of vulval skin (opens in a new tab)
• International Society for the Study of Vulvovaginal Disease (opens in a new tab): Vulvar lichen sclerosus in children
• British Association of Dermatologists: guidelines for the management of lichen sclerosus (2018) 178, pp839-853 (opens in a new tab)
• British Association of Dermatologists: Vulval lichen sclerosis in female children patient information leaflet (opens in a new tab)

Contact us

If you have any further questions, please email the dermatology consultant’s secretary Monday to Friday 09:00 (9am) to 17:00 (5pm)