Lichen Sclerosus in Girls

What are the aims of this leaflet?

This leaflet has been written to help you understand more about lichen sclerosus (LS). It tells you what it is, what causes it, what can be done about it, and where you can find out more about it.

What is lichen sclerosus?

Lichen sclerosus is a chronic inflammatory skin condition which can affect any part of the skin, but most often affects the genital skin (vulva) and the skin around the anus. It can start in childhood or adulthood (usually after the menopause) and affects girls or women of any age.

What causes lichen sclerosus?

The cause of lichen sclerosus is not fully understood. It can be associated with other diseases in which the body’s immune system attacks normal tissues such as the thyroid gland (causing an overactive – or underactive thyroid gland) or the insulin-producing cells in the pancreas (causing diabetes), but it has not been proven that it is an auto-immune condition in itself.

Lichen sclerosus is not due to an infection. The disease is not contagious and cannot be spread through contact. Friction or damage to the skin can make it worse. Irritation from urine leakage or wearing panty liners can also make it worse.

Is lichen sclerosus hereditary?

It is not known if lichen sclerosus is hereditary, but it rarely occurs in relatives.

What are the symptoms of lichen sclerosus?

The most common symptom of vulval lichen sclerosus is itching, which may be severe and be very sore if the skin breaks down or cracks. This can cause bleeding and some girls may complain of pain passing urine. In the genital area, the inflammation can cause tightening of the skin. Tightening of the skin around the anus may cause discomfort when passing bowel motions and aggravate any tendency to constipation, especially in children.

Some children get patches of lichen sclerosus on the non-genital skin. These rarely cause any symptoms at all.

What does lichen sclerosus look like?

The skin has a white shiny appearance which is usually thinned but can sometimes become raised and thickened. When the anus is affected it is described as ‘a figure of eight pattern’. Skin fragility may lead to breaking of some small blood vessels in the skin which appear as tiny blood blisters. Occasionally small cracks called fissures can be seen. If not treated, there may be a change in the normal appearance of the vulva.

In areas away from the genital skin, lichen sclerosus looks like small ivory-coloured slightly raised areas, which can join up to form white patches. After a while the surface of the spots can look like white wrinkled tissue paper. The most common sites are the bends of the wrists, the upper trunk, around the breasts, the neck and armpits.

How will lichen sclerosus be diagnosed?

The diagnosis can usually be made from the typical appearance of the condition. If there is any doubt, a small skin sample may be taken and examined under a microscope to confirm the diagnosis, especially if there is an open sore or a thickened area of skin. This is seldom necessary.

Can lichen sclerosus be cured?

There is no permanent cure for lichen sclerosus, but the symptoms and signs of the disease can be well controlled with the application of creams to the affected skin. If it starts in childhood, it usually goes away around the time of puberty.

How can lichen sclerosus be treated?

The key to long term management is the prompt treatment of any flare up and keeping the skin in as good condition as possible.

Steroid ointment

Strong steroid ointments (most commonly clobetasol propionate 0.05%) are used to stop the inflammation and also soften the affected skin. As things improve these ointments can be applied less frequently. Your doctor will tell you how long to use the ointment for.

The steroid ointment should be applied sparingly (this means half a fingertip) as directed by your doctor. Do not use straight after using emollients as the steroids will not be absorbed into the skin and so will be less effective. It is best to leave at least 1 hour between applying the steroid cream and the emollients or to apply at different times of the day. Wash your hands after applying the steroid ointment.

Please do not worry about the warning inside the pack, where it might say ‘not to use these ointments on genital skin’ as these are very safe for this condition and your doctor will advise you how and when to apply the steroid ointments safely.

Emollients

These are moisturisers to help soften and protect the skin. They are safe to use every day regardless of symptoms. Some can also be used in the bath as soap substitutes. A moisturiser or yellow soft paraffin (such as Vaseline) can also be used as a barrier cream. This can protect the skin from exposure to urine. If your daughter goes swimming these can also protect the skin from the chemicals in the pool.

Avoiding Irritants

Avoid using soap, bubble bath or shampoo in the bath. Wash hair separately. It can also help to avoid wearing tight clothing, such as tights, cycling shorts etc.

Encourage your daughter to carefully dry herself after passing urine to reduce the contact of urine with her skin.

Follow up

The symptoms and signs of lichen sclerosus can usually be well controlled. Once the condition is well controlled, follow up may be reduced to once yearly.

In older women there is a small (less than 5%) risk of developing a skin cancer in affected areas on the vulva. This can look like lumps, ulcers or crusted areas. This has not been reported in children. It is therefore important that patients continue to see their doctor or nurse regularly.  If any skin changes develop which do not respond to steroid creams, in particular any skin thickening, soreness or ulceration lasting more than two weeks, then it is important to see a doctor.

Safety advice when using emollients

Follow this general safety advice when using emollients:

• Keep away from fire, flames and cigarettes when using paraffin-based emollients. Dressings and clothing soaked with the ointment can be easily ignited. It is also advisable to wash clothing and bed linen regularly, preferably daily.
• Use a clean spoon or spatula to remove emollients from a pot or tub. This reduces the risk of infections from contaminated pots.
• Take care of slipping when using emollients in a bath or shower, or on a tiled floor. Protect the floor with a non-slip mat, towel or sheet. Wearing protective gloves, wash your bath or shower after with hot water and washing up liquid, then dry with a kitchen towel.
• Never use more than the recommended amount of bath additive. It may cause skin irritation if the concentration is too high.

 Helping your daughter stay safe

As your daughter has a genital problem the doctor needs to look at her genital area to see if she needs any treatment. This can be a good opportunity for parents to later talk with their daughters about staying safe. The NSPCC offer an excellent on line resource for this at nspcc.org.uk/pants

Where can I get more information about lichen sclerosus?

This leaflet is based on the British Association of Dermatologists guidelines for the management of lichen sclerosus, 2018*  

http://www.bad.org.uk/shared/get-file.ashx?id=6039&itemtype=document

Treatment Plan