Questions and Answers About Lichen Sclerosus.

This fact sheet contains general information on lichen sclerosus. It describes what lichen sclerosus is and how it is diagnosed and treated. If you have further questions after reading this fact sheet, you may wish to discuss them with your doctor.

* What Is Lichen Sclerosus?

* How Common Is It?

* What Are the Symptoms?

* What Causes Lichen Sclerosus?

* Is It Contagious?

* How Is It Diagnosed?

* How Is It Treated?

* Can People With Lichen Sclerosus Have Sexual Intercourse?

* Is Lichen Sclerosus Related to Cancer?

* What Kind of Doctor Treats Lichen Sclerosus?

* Where Can People Find More Information on Lichen Sclerosus?

* Acknowledgments

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.

Prescription medications are required to treat vulvar lichen sclerosus, nongenital lichen sclerosus that is causing symptoms, and lichen sclerosus of the penis that is not cured by circumcision. The treatment of choice is an ultrapotent topical corticosteroid. Daily use of these creams or ointments can stop itching within a few days and restore the skin's normal texture and strength after several months. However, treatment does not reverse the scarring that may have already occurred.

Because ultrapotent corticosteroid creams and ointments are very strong, frequent evaluation by a doctor is necessary to check the skin for side effects when the medication is used every day. Once the symptoms are gone and the skin has regained its strength, medication can be used less frequently, although use must continue indefinitely, several times a week, to keep vulvar lichen sclerosus in remission.

Young girls may not require lifelong treatment, since lichen sclerosus can sometimes, but not always, disappear permanently at puberty. Scarring and changes in skin color, however, may remain even after the symptoms have disappeared.

Because ultrapotent topical corticosteroids are so effective, other therapies are rarely prescribed. The previous standard therapy was testosterone ointment or cream, but this has recently been proven to produce no more benefit than a placebo (inactive) cream. Another hormone cream, progesterone, was previously used to treat the disease, but also has little beneficial effect. Retinoids, or vitamin A-like medications, may be helpful for patients who cannot tolerate or are not helped by ultrapotent topical corticosteroids.

Patients who need medication should ask their doctor how it works, what side effects it might have, and why it is the best treatment for lichen sclerosus.

For women and girls, surgery to remove the affected skin is not an acceptable option. Surgery may be useful for scarring, but only after lichen sclerosus is controlled with medication.

Sometimes, people do not respond to the ultrapotent topical corticosteroid. Other factors, such as low estrogen levels that cause vaginal dryness and soreness, a skin infection, or irritation or allergy to the medication, can keep symptoms from cleating up. Your doctor may need to treat these factors as well. If you feel that you are not improving as you would expect, talk to your doctor.

Can People With Lichen Sclerosus Have Sexual Intercourse?

Women with severe lichen sclerosus may not be able to have sexual intercourse because of pain or scarring that narrows the entrance to the vagina. However, proper treatment with an ultrapotent topical corticosteroid should restore normal sexual ability, unless severe scarring has already narrowed the vaginal opening. In this case, surgery may be needed to correct the problem, but only after the disease has been controlled.

Is Lichen Sclerosus Related to Cancer?

Lichen sclerosus does not cause skin cancer. However, skin that is scarred by lichen sclerosus is more likely to develop skin cancer. About 1 in 20 women with untreated vulvar lichen sclerosus develops skin cancer. The frequency of skin cancer in men with lichen sclerosus is not known. It is important for people who have the disease to receive proper treatment and to see their doctor every 6 to 12 months, so that he or she can monitor and treat any changes that might signal skin cancer.

What Kind of Doctor Treats Lichen Sclerosus?

Lichen sclerosus is treated by dermatologists (skin doctors) and by gynecologists if the female genitalia are involved. Urologists and primary care health providers with a special interest in genital diseases also treat this disease. To find a doctor who treats lichen sclerosus, ask your family doctor for a referral, call a local or State department of health, look in the local telephone directory, or contact a local medical center. The American Academy of Dermatology also provides referrals to dermatologists in your area, and the American College of Obstetricians and Gynecologists can refer you to a gynecologist. The Directory of Medical Specialists, available at most public libraries, lists dermatologists, gynecologists, and urologists in your area.

Where Can People Find More Information on Lichen Sclerosus?

* National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) Information Clearinghouse National Institutes of Health 1 AMS Circle Bethesda, MD 20892-3675 301/495-4484 or 877/22-NIAMS (toll-free) TTY: 301/565-2966 Fax: [phone] NIAMS Fast Facts--For health information that is available 24 hours a day by fax, call 301/881-2731 from a fax machine telephone.

This clearinghouse, a public service sponsored by the NIAMS, provides information on arthritis and musculoskeletal and skin diseases. The clearinghouse distributes patient and professional education materials and also refers people to other sources of information.

* American Academy of Dermatology 930 North Meacham Road Schaumburg, IL 60173 847/330-0230 or 888/462-DERM (3376)(toll free) Fax: [phone] World Wide Web address: http://www.aad.org/

This national professional association for dermatologists provides patient information and referrals to dermatologists.

* American College of Obstetricians and Gynecologists 409 12th Street, S.W. P.O. Box 96920 Washington, DC 20090-6920 202/638-5577 Fax: [phone] World Wide Web address: http://www.acog.org/

This professional association provides referrals to gynecologists and has patient education materials.

* American Urological Association 1120 North Charles Street Baltimore, MD 21201 410/727-1100 Fax: [phone] World Wide Web address: http://www.auanet.org/

This professional association provides physician referrals to urologists through its Web site. Many public libraries now provide access to the World Wide Web. Ask a librarian for assistance.

* National Vulvodynia Association (NVA) P.O. Box 4491 Silver Spring, MD 20914-4491 301/299-0775 Fax: [phone] World Wide Web address: http://www.nva.org/

This association provides information and support to women who have vulvovaginal pain, including pain caused by lichen sclerosus. The NVA maintains a network of support groups or support individuals throughout the United States, in Canada, and in Europe. The association also publishes a newsletter.

Ultrapotent Corticosteroids Available by Prescription in the United States

* betamethasone dipropionate

* clobetasol propionate

* diflorasone diacetate

* halobetasol propionate

Acknowledgments

The NIAMS gratefully acknowledges the assistance of Alan Moshell, M.D., NIAMS, NIH; Libby Edwards, M.D., Wake Forest University School of Medicine; and Harriet O'Connor, National Vulvodynia Association, in the preparation and review of this fact sheet.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), a part of the National Institutes of Health (NIH), leads the Federal medical research effort in arthritis and musculoskeletal and skin diseases. The NIAMS supports research and research training throughout the United States, as well as on the NIH campus in Bethesda, MD, and disseminates health and research information. The National Institute of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the NIAMS that provides health information and information sources.

NIH Publication No. AR-143 QA March 2000

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