Lichen Sclerosus

Lichen sclerosus is a rare skin condition that usually affects the vulva and anal areas in young children, adolescents, and adults. It’s unknown what causes the condition, but it’s more common before puberty and after menopause. Similar to other skin conditions, there are treatments available to help the symptoms.

What is lichen sclerosus and what does it look like?

Lichen sclerosus (LS) is a skin condition that makes the vulva look white, slightly shiny, and smooth. The skin’s surface becomes thin and delicate so that it bleeds, tears, and bruises easily, often causing tiny “blood blisters”. Lichen sclerosus can also cause the skin of the inner lips of the vulva to change and shrink or get smaller. In severe cases, scar tissue can form. For example, scar tissue can cover the clitoris which can be painful.

What causes lichen sclerosus?

The cause of lichen sclerosus is unknown. Scientists have different theories to try to explain the cause, including an overactive immune system, genetic traits (it can run in families), local irritation or changes in hormones. Since lichen sclerosus is not caused by an infection, it cannot be spread and is not contagious.

What are the symptoms of lichen sclerosus?

Symptoms of lichen sclerosus may be different from person to person and they can be mild to severe. Lichen sclerosus can occur on any skin surface, but it usually affects the vulva, around the anus and the area between the vagina and anus. People born with a female reproductive system who have this skin condition may have some or all of the following symptoms.

• Mild to severe itching and soreness
• Skin that appears fragile, pale, and/or white
• Bruised skin with broken blood vessels or “blood blisters”
• Small tears or fissures in the skin
• Scar tissue covering the labia or clitoris
• Bleeding when having bowel movements

Other symptoms caused from chronic skin irritation

• Painful urination (peeing) due to urine flowing over irritated skin
• Painful bowel movements due to small skin tears around the anus
• Constipation due to withholding bowel movements because of worry over increased pain
• Discharge/blood on underpants from scratching irritated areas

How is lichen sclerosus diagnosed?

Lichen sclerosus can be a difficult diagnosis to make. It’s not unusual for someone to see more than one health care provider (HCP) before this skin condition is finally diagnosed. This can be very frustrating if the treatment isn’t working. Most of the time, health care providers (HCP) who see a lot of children with lichen sclerosus can make the diagnosis just by looking at the skin. In adolescents and older adults, the health care provider may suggest a biopsy (removal and examination of a small sample of affected skin) to make sure the diagnosis is correct.

Is there treatment for lichen sclerosus?

Even without symptoms, it’s important to treat lichen sclerosus. The goal of treatment is to lessen vulvar itching and soreness, and prevent bruising, scarring and tiny tears in the skin. Treatment to genital skin is necessary to try to prevent scarring of the vulva. Scarring may cause parts of the vulva to narrow as well as future problems such as passing urine or pain with sexual activity.

Are there medicines to treat lichen sclerosus?

Yes. Prescription medications are available to help with the symptoms of lichen sclerosus. The most common treatment is a strong topical corticosteroid ointment that lessens swelling and itching on the skin and decreases the body’s immune response. A health care provider will probably recommend applying medicine every day for weeks to months depending upon the response to treatment. After the skin is much healthier, a lower dose of medicine is prescribed. The topical ointment should be used the way it is prescribed. It should not be stopped suddenly. Before it is discontinued altogether, the topical medication should gradually be used less frequently and in smaller amounts.

After several months to years, continued treatment may not be necessary, however it is still important to watch for signs that the condition is returning and see your health care provider for check-ups. You should try to avoid things that might irritate your vulva such as harsh soaps, bubble baths, long bike or horseback rides, or other activities or clothes (such as tight jeans) that can cause a lot of rubbing of your genital area. Treatment may not change the scarring.

Will I need surgery?

Most of the time, the prescription medicine works to control symptoms and return your skin to normal. In extreme cases, surgery may be necessary to treat scars.

Can women with lichen sclerosus have sex?

Lichen sclerosus is not contagious since it’s a skin disorder and not an STI (sexually transmitted infection). Most children treated early for lichen sclerosus can have comfortable sexual intercourse in the future. However, adolescents and adults with severe lichen sclerosus may have scarring around the opening of the vagina and not be able to have sex comfortably. Vaginal dilators and in rare cases, surgery may be needed.

Does lichen sclerosus cause cancer?

Lichen sclerosus is not skin cancer. However, scientists have found that postmenopausal adults with lichen sclerosus are at higher risk of having vulvar cancer. It is unknown if children have the same risk. This is why it’s very important to be followed by a health care provider 1-2 times a year (at least) to watch for any skin changes. Any new health care providers should be aware that their patient has this skin condition. Your health care provider can watch for any changes to your skin and treat your symptoms.

More suggestions to help manage lichen sclerosus:

• Cotton underwear and loose fitting clothing should be worn rather than materials such as nylon that doesn’t breathe. No underwear at nighttime.
• Tights, jeggings, leotards or other tight fitting bottoms should only be worn for an activity (such as dance and gymnastics), then loose fitting bottoms.
• Scented soaps, bubble bath, feminine hygiene sprays and other perfumed skin care products and /or detergents should be avoided and replaced with unscented soaps, etc.
• Fabric softeners and/or dryer sheets should not be used when washing clothes.
• Shampoo and soap products should be completely rinsed off at the end of a shower.
• Staying in wet bathing suits or damp bottoms should be avoided and replaced with dry clothes.