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Lichen Sclerosus FAQs - Lichen Sclerosis

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Updated July 17, 2009

What Is Lichen Sclerosus?

Lichen sclerosus (LIKE-in skler-O-sus) is a skin disorder that can affect men, women, or children, but is most common in women. It usually occurs on the vulva (the outer genitalia or sex organ) in women, but sometimes develops on the head of the penis in men. Occasionally, lichen sclerosus is seen on other parts of the body, especially the upper body, breasts, and upper arms.

The symptoms are the same in children and adults. Early in the disease, small, subtle white spots appear. 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. As a result, the skin tears easily, and bright red or purple discoloration from bleeding inside the skin is common. 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.

Lichen sclerosus of the penis occurs almost exclusively in uncircumcised men (those who have not had the foreskin removed). The foreskin can scar, tighten, and shrink over the head of the penis. Skin on other areas of the body affected by lichen sclerosus usually does not experience scarring.

How Common Is It?

Although definitive data are not available, lichen sclerosus is considered a rare disorder that can develop in people of all ages. It primarily affects the vulva. Fewer than 1 in 20 women who have vulvar lichen sclerosus have the disease on other skin surfaces. The disease is much less common in childhood. In boys, it is a major cause of tightening of the foreskin, which requires circumcision. Otherwise, it is very uncommon in men.

What Are the Symptoms?

Symptoms vary depending on the area affected. Patients experience very different degrees of discomfort. When lichen sclerosus occurs on parts of the body other than the genital area, most often there are no symptoms, other than itching. If the disease is severe, bleeding, tearing, and blistering caused by rubbing or bumping the skin can cause pain.

Very mild lichen sclerosus of the genital area may cause itching, but often causes no symptoms at all. If the disease worsens, itching is the most common symptom. Rarely, lichen sclerosus of the vulva may cause extreme itching that interferes with sleep and daily activities. Rubbing or scratching to relieve the itching can create painful sores and bruising, so that many women must avoid sexual intercourse, tight clothing, tampons, riding bicycles, and other common activities that involve pressure or friction. Urination can be accompanied by burning or pain, and bleeding can occur, especially during intercourse. When lichen sclerosus develops around the anus, the discomfort can lead to constipation. This is particularly common in children.

Most men with genital lichen sclerosus have not been circumcised. They sometimes experience difficulty pulling back the foreskin and have decreased sensation in the tip of the penis. Occasionally, erections are painful, and the urethra (the tube through which urine flows) can become narrow or obstructed.

What Causes Lichen Sclerosus?

The cause is unknown, although an overactive immune system may play a role. Some people may have a genetic tendency toward the disease, and studies suggest that abnormal hormone levels may also play a role. Some scientists believe that an infectious bacterium, called a spirochete, may cause the changes in the immune system that lead to lichen sclerosus.

Is It Contagious?

No, lichen sclerosus is not contagious.

How Is It Diagnosed?

Doctors can diagnose an advanced case by looking at the skin. However, early or mild disease often requires a biopsy (removal and examination of a small sample of affected skin). Because other diseases of the genitalia can look like lichen sclerosus, a biopsy is advised whenever the appearance of the skin is not typical of lichen sclerosus.

How Is It Treated?

Patients with lichen sclerosus of nongenital skin often do not need treatment because the symptoms are very mild and usually go away over time. (The amount of time involved varies from patient to patient.)

However, lichen sclerosus of the genital skin should be treated, even when it is not causing itching or pain, because it can lead to scarring that may narrow openings in the genital area and interfere with either urination or sexual intercourse or both. There is also a very small chance that cancer may develop.

In uncircumcised men, circumcision is the most widely used therapy for lichen sclerosus. This procedure removes the affected skin, and the disease usually does not recur.

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