Pediatric and Adolescent Gynecology

What is Lichen Sclerosus?

Lichen sclerosus (LIKE-in skler-O-sus) is a skin disorder that most commonly affects older women. It can happen at any age, and sometimes runs in the family. It usually occurs on the vulva (the outer genitalia) in women, but can occur on the upper body, breasts, and upper arms of women and on the head of the penis of men.

What are the symptoms?

Sometimes there are no symptoms, but usually, there is itching or irritation of the vulva. Sometimes there can be small breaks or “cuts” in the skin that are painful. When the doctor looks at the area, there are larger patches of thin whitish appearing skin that may look “crinkly.”

Often, the affected area looks like a “keyhole” around the vulva and anus. Because the skin is thin, it tears easily, causing pain and bleeding. Bleeding under the skin can cause bright red or purple discoloration or “blood blisters.” Women may choose to avoid sexual intercourse, tight clothing, tampons, riding bikes or horses and other common activities that involve pressure or friction. Urination can be accompanied by burning or pain.

Persistent untreated lichen sclerosus can result in scarring. The result may be that the inner lips of the vulva shrink and disappear, the clitoris becomes covered with scar tissue, and/or the opening of the vagina may narrow.

What causes Lichen Sclerosus?

The cause of lichen sclerosus is not known, but an overactive immune system may play a role. There may be a genetic tendency toward the disease and studies suggest that abnormal hormone levels may also play a role. Some studies suggest that an infectious bacterium called a “spirochete” may cause changes in the immune system leading to lichen sclerosus.

Is Lichen Sclerosus contagious?

No, lichen sclerosus is not contagious.

How is Lichen Sclerosus diagnosed?

Lichen sclerosus can be diagnosed in the office by looking at the skin. While some offices do biopsies of the skin, a biopsy is usually not necessary.

How is Lichen Sclerosus treated?

Lichen sclerosus is a chronic ongoing condition that needs ongoing treatment – even if there are no symptoms. Continuing treatment will help prevent symptoms and scarring.

Prescription medications are required to treat vulvar lichen sclerosus. The first treatment of choice is a very strong steroid ointment (Clobetasol). After initial short term treatment (2-4 weeks) with the very strong steroids, the strength of the steroid cream or ointment will be reduced to medium or low strength steroids (Triamcinalone or Hydrocortisone). The strength of the steroid used and how often it needs to be will depend how the skin responds.

Daily use of these creams or ointments can stop the symptoms (itching, bleeding), help the skin to heal and prevent scarring. Even after the symptoms are gone, the medicine needs to continue to prevent scarring and the symptoms from returning.

Some girls may require lifelong treatment. Lichen sclerosus may or may not disappear permanently at puberty. Scarring and changes in skin color may remain even after the symptoms have disappeared.