Lichen Sclerosus

What is lichen sclerosus and who does it affect?

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.

It most commonly affects the vulva (genital skin) of women. Less commonly it affects other areas of the skin. 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. However, it may be more common than this as some mild cases may go undiagnosed.

In males, lichen sclerosus affects the foreskin and end of the penis. It is uncommon but can occur at any age, including young boys. Lichen sclerosus in males used to be called balanitis xerotica obliterans.

What are the symptoms of lichen sclerosus?

Women and girls - vulval and anal area

In a typical case, small 'pearly white' spots develop on the vulva. The spots are usually itchy and shiny. In about 3 in 10 cases, the skin around the anus is also affected. Sometimes only the skin around the anus is affected. Typically, the itch and irritation becomes persistent and distressing. The itch tends to be worse at night which can disturb sleep. Sometimes soreness rather than itch is the main symptom. Lichen sclerosus is a skin condition only and does not extend into the vagina or inside the anus.

Over time, the white spots may become larger and join together. The whole vulva and/or anal skin may then become white and be more fragile than normal. The fragile skin may become damaged, inflamed, raw, and prone to painful splitting and cracking. It may become painful to have sex. If the anal skin is affected, passing faeces (stools) may cause pain or splitting of the skin.

If left untreated, over months or years the vulva may atrophy (shrink). In some cases the changes of the vulval skin may make the entrance to the vagina (the labia) narrower. This can make it difficult or painful to have sex. Also, thrush and other infections tend to be more common if the vulva is sore or cracked.

Symptoms may slowly get worse but not all the above symptoms may occur. It can take months or years from the first small spots to progress to more severe symptoms. At first the symptoms may be mistaken for thrush or other problems if the vulva is not examined carefully.

Men and boys - penis

White spots develop on the foreskin and end of the penis. These may itch and can be sore. In time, the changes to the affected skin may cause difficulty in retracting the foreskin and in passing urine. Erections may become painful. The anal skin is rarely affected in men.

Other areas of skin

Sometimes small patches of lichen sclerosus occur on other parts of the body. These look like small pearly white areas on the skin. Sometimes they occur in people who also have genital lichen sclerosus. Sometimes they occur without genital problems. Away from the genital area, patches of lichen sclerosus usually do not cause itch or other symptoms and are usually harmless.

What causes lichen sclerosus?

The cause is not known. There is a type of inflammation within affected skin which causes changes to the structure of the affected skin. It is not clear why this happens.

The cause is possibly an auto-immune disease. This is when the body's immune system attacks a part of the body. This causes inflammation and damage to the affected part of the body. In people with lichen sclerosus the genital area of skin may be attacked by some parts of the immune system which then causes inflammation. However, this has not been proved and it is not known what triggers lichen sclerosus to develop.

About 1 in 4 people with lichen sclerosus have another auto-immune disease such as thyroid disease, vitiligo, or pernicious anaemia. This is why it is thought that lichen sclerosus is also an auto-immune disease. Lichen sclerosis is not infectious, and it is not passed on to others by touch or during sex.

Are there any complications from lichen sclerosus?

• There is a small increased risk of developing cancer of the vulva. The exact risk is not known but it is thought that about 4 in 100 women with lichen sclerosus develop this cancer.
• The itch and discomfort may cause much distress.
• The changes to the genital skin may cause sexual difficulties or problems in passing urine.

How is lichen sclerosus diagnosed?

The appearance is often fairly typical. To confirm the diagnosis a small sample (biopsy) of affected skin may be taken under local anaesthetic. The sample of skin is put under the microscope to look at the structure of the skin cells and tissues. This can confirm the diagnosis and rule out other disorders which can sometimes mimic this condition.

What is the treatment for lichen sclerosus?

Topical steroid

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 for three months as directed by your doctor. 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 with a topical steroid at an early stage. However, if the appearance of the skin has already changed a lot, the changes may not reverse much with topical steroid treatment, even though symptoms of itch and soreness are often relieved.

After the initial regular treatment for about three months, you may then only need to use the ointment or cream once or twice every 1-2 weeks to keep symptoms away.

Some general measures

Use an emollient (moisturiser) cream or ointment instead of soap to clean the genital area. This is also soothing. Avoid bubble baths, scented soap, detergents, perfumes, etc, to the vulva. These may irritate the skin and make symptoms worse. Lubricants are useful during sex if having sex is painful.

Other treatments that are sometimes used

• Other medicines. In the small number of cases where topical steroids do not help, a skin specialist may advise other medicines to reduce inflammation.
• A vaginal dilator may be advised if you have any narrowing of the vaginal opening. A vaginal dilator is a cylinder-shaped piece of plastic that you insert into the vagina to gently stretch the vagina and vaginal opening. You use it each day for a time as directed by your doctor.
• Surgery. An operation to widen the opening of the vagina is occasionally needed in women with severe lichen sclerosus which has caused narrowing of the vaginal entrance. (But note: regular use of a dilator as described above may prevent the need for surgery.)
• Circumcision (removal of the foreskin) may be needed in some affected men or boys.

Will it go away?

There is no permanent cure for lichen sclerosus. However, treatment with a topical steroid usually controls the symptoms of itch and soreness, and often prevents the condition from getting worse. Occasionally, the condition clears away for good for no apparent reason. This is more common in young girls when the condition often goes during puberty.

Check your vulva

As mentioned above, cancer of the vulva is an uncommon complication. Therefore, it is best to get into the habit of checking your vulva about once a month to look out for any signs of early vulval cancer. As a rule, the earlier any cancer is detected, the easier it is to treat.

To check your vulva, use a hand held mirror to see your vulva and use your fingers to feel your vulva. Get to know what your vulva looks and feels like, and see a doctor if there is any changes occur. For example, if you detect any thickening, warts, lumps, ulcers, blisters or sores in the vulval skin.

Further help and information

National Lichen Sclerosus Support Group

Helpline: 07765 947599 Web: www.lichensclerosus.org

Vulval Health Awareness Campaign (VHAC)

Web: www.vhac.org
Their website includes a detailed leaflet explaining how to examine and check your vulva - http://www.vhac.org/cgi-bin/download.cgi

For websites that give pictures of skin conditions see www.patient.co.uk/showdoc/1097/