Lichen sclerosus Dr Rob Hicks Lichen sclerosus is a skin condition that causes inflammation and often intractable itching for long periods of time.

In this article

What is Lichen sclerosus? Symptoms

Causes and risk factors Treatment and recovery

Advice and support

Lichen sclerosus mostly affects the skin around the genital and anal areas.

Some people have the condition but have no symptoms at all. Many, however, experience inflammation and often agonising, intractable itching for long periods of time.

The rash usually begins as white irregular spots that join together to form plaques. The plaques may be just a few millimetres in size or cover the entire upper trunk. While the genital area is particularly affected, the disease may be found anywhere on the body, most commonly on the back and shoulders.

Women are affected most often around the vulva, where the skin becomes white and thickened. Inflammation may develop and become so intense that large surface areas are blistered and shed. This forms scars, making the vulva shrink in size and the vagina tighten. This makes having sexual intercourse extremely difficult and painful, and many women describe how they have to put up with 'enforced celibacy'.

Similar effects occur around the anus. This makes normal bowel opening uncomfortable, often resulting in small tears which can be exceptionally sore. These damaged areas are often accompanied by blisters and sores that are susceptible to the further problems of infection and thrush.

For men, the tip of the penis is most often affected. It too becomes firm and white and narrowing of the urethral opening makes passing urine difficult. This condition is also known as balanitis xerotica obliterans and it is seen almost exclusively in uncircumcised men and boys. There may be sudden narrowing or phimosis of a previously retractable foreskin, blocking the flow of urine.

With chronic discomfort, the effect on people's sex lives and the fact there's no cure, some people get depressed as a result.

Up to 15 per cent of cases occur in children. This is mostly in girls, where the vulva is affected although studies of foreskins removed during circumcision shows that there may be many cases of unrecognized lichen sclerosus in boys.

Lichen sclerosus is estimated to affect up to one in 300 people around the world, the majority of them women over 50. Men are much less often affected.

There's actually very little known about lichen sclerosus considering it was first reported in 1887. Many theories have been put forward suggesting a genetic susceptibility to an autoimmune reaction that may be triggered by infection. There also appears to be a link with other auto-immune conditions, for example thyroid disease. However, none of this is known for certain.

In recent years there has been renewed interest in a possible link with a group of micro-organisms called Borrelia, with antibodies to this bacteria found in more than a quarter of cases.

Since lichen sclerosus affects such a sensitive area of the body it's important to point out that it's not infectious, not sexually transmitted, and nothing to do with poor hygiene.

Sadly, many people may suffer the traumatic symptoms of lichen sclerosus for months, sometimes years, before it's correctly diagnosed. Making the diagnosis is not easy (a skin biopsy is necessary) and often the disease is wrongly thought to be eczema or thrush.

If vulval itching is present for more than a year then the a dermatologist's opinion should be sought.

Once the diagnosis is made many people describe feeling better - that at last they've been taken seriously, that their problem is not just in their mind, and that something can be done to alleviate their symptoms. This helps create a positive attitude which is an essential part of treatment for chronic diseases.

Asymptomatic lichen sclerosus in areas other than the genitals usually requires no treatment. Itching can be calmed with simple remedies. Children often find symptoms improve with puberty.

When there are more serious symptoms, the mainstay of treatment is steroid creams, which are used initially for a period of three months and then as needed. A number of other treatments are sometimes tried.

Moisturising creams help soothe the skin and sometimes anaesthetic creams or gels are beneficial. However, cosmetic changes to the skin or genitals may persist and be resistant to medication. Healthy skin needs vitamins C and E, and zinc, so the diet should be abundant in these.

Antibiotics are needed when infection is present and anti-fungal treatments are required for thrush.

Sometimes surgery or laser treatments to remove an affected area (or remove the foreskin in boys) may help. Although lichen sclerosus is said to resolve spontaneously after a number of years, it tends to cause physical damage in the meantime and this damage often needs repair with an operation (for example to restore a normal flow of urine).

There is also an increased risk of cancer in the long-term. In men, there is a small risk of squamous cell carcinoma of the penis, while vulva cancer occurs in about 5 per cent of women with lichen sclerosus. For this reason regular follow-up by a specialist is recommended.

National Lichen Sclerosus Support Group
Helpline: 07765 947599 (subject to volunteer staffing)
Website: www.lichensclerosus.org

This article was last medically reviewed by Dr Trisha Macnair in March 2009.