What is lichen sclerosus?

Lichen sclerosus is a long-term (chronic) skin condition. It causes the skin to become thin, white, and wrinkly. Lichen sclerosus may occur in adults and children at any age. It is most common in women older than age 50.

Skin has several layers. The outer layer is the epidermis. Under the epidermis is the dermis. The dermis contains blood vessels, nerve endings, hair roots, and sweat glands. With lichen sclerosus, the epidermis may become thin. Inflammatory cells invade the dermis. This may cause swelling and broken blood vessels. Stretchy fibers in the skin (elastic and collagen) may break. All of this can lead to symptoms, such as itching, pain, and blisters.

This condition often affects the genital and anal areas. Vulvar lichen sclerosus is a common form of the condition that affects a woman’s external genital areas. Less often, lichen sclerosus can affect other parts of the body. These may include the neck, shoulder, breast, thighs, or mouth.

What causes lichen sclerosus?

Experts are still working to understand what causes lichen sclerosus. It runs in families, so experts think that certain genes may play a role. It does not seem to be contagious. So you can’t catch it from another person. Some factors that may lead to the condition are:

• Problems with your immune system

• Hormonal imbalances, especially with estrogen

• Past skin damage

Who is at risk for lichen sclerosus?

You may have a greater risk for lichen sclerosus if you have an autoimmune disease, such as:

• Autoimmune-related thyroid disease

• Autoimmune-related anemia

• Vitiligo

• Type 1 diabetes

• Alopecia areata

Other factors that can increase your risk include:

• A history of sexual abuse

• A history of the condition in your family

Circumcision greatly lowers the risk of lichen sclerosus in men.

What are the symptoms of lichen sclerosus?

Lichen sclerosus causes skin changes. Very early on, you might not have any symptoms at all. A little later, you may see small white spots on your skin.

Common symptoms might include:

• Vulvar itching (very common)

• Anal itching, bleeding, or pain

• Pain during sex

• Skin bruising and tearing

• Blisters

• Easy bleeding from minor rubbing of the skin

• Pain or bleeding when having a bowel movement

• Trouble urinating or pain with urination

• Painful erections (in men)

Lichen sclerosus doesn’t affect the inner reproductive organs, such as the vagina or uterus.

How is lichen sclerosus diagnosed?

Your healthcare provider will ask about your health history and symptoms. You will also have a physical exam. This will include a close physical exam of the affected areas.

Often, this is enough for a diagnosis. In some cases, you may have a skin biopsy. For a biopsy, small skin samples are removed and looked at in a lab.

In some cases, you may need other tests. This is to make sure you don’t have other health conditions. These may include lichen planus, low estrogen levels, or vitiligo. Your provider may also want tests to check you for certain conditions, such as autoimmune thyroid problems. The area of skin may also be checked to make sure it isn’t infected.

How is lichen sclerosus treated?

You may be treated by a primary healthcare provider, a skin healthcare provider, or a healthcare provider specializing in the reproductive organs.

Often, patches outside the genital and anal area may go away with time. Your healthcare provider may choose to watch these areas before starting treatment. Symptoms in the genital and anal area don’t often get better without treatment.          

Treatment is done to ease symptoms and keep the lichen sclerosus from getting worse. The treatment often starts with steroid ointment. This reduces pain, itching, and inflammation. When used regularly, this helps manage symptoms for most people. Other possible treatments include:

• Steroid injections. These are more likely to be used if steroid ointment doesn’t work well.

• Tricyclic antidepressants at low doses. This may decrease vulvar pain.

• Other medicines. These may be used if other treatments have failed. These medicines may include acitretin (except in women of childbearing age due to risk of severe birth defects) or tacrolimus.

• Ultraviolet light treatment. This is done if other treatments fail.

For men, removing the foreskin (circumcision) is often a successful treatment. In women, surgery is often not a preferred treatment. That's because lichen sclerosus often comes back.

These treatments often reduce most of the symptoms and keep the condition from getting worse. You will likely need to use medicine on a regular, long-term basis. If untreated, the condition tends to get worse over time.

What are possible complications of lichen sclerosus?

Vulvar lichen sclerosus may slightly increase the risk of squamous cell skin cancer in women. Men with lichen sclerosus on the penis may also have an increased risk. (Lichen sclerosus on other parts of your body does not seem to increase your cancer risk.) Your healthcare provider may need to check your skin on a regular basis. You may need a biopsy of any abnormal areas to check for skin cancer. You should also check yourself regularly for lumps or sores that don’t heal.

Untreated advanced lichen sclerosus may permanently change the look of your genitals. The vagina's opening may narrow. The outer and inner lips of the vulva may stick together. You may need surgery to fix these changes. In men, the foreskin may scar and shrink. This leads to trouble pulling back the foreskin. In both men and women, the condition may cause pain during sex.

Treatments for lichen sclerosus can also cause complications. For example, using steroid ointment for a long time may cause genital yeast infections.

Coping with lichen sclerosus

Practicing good hygiene may help you reduce some of the symptoms of lichen sclerosus. Your healthcare provider may advise that you:

• Not scratch the area

• Not wear pantyhose (wear thigh-high stockings instead)

• Wear cotton underwear instead of synthetic underwear

• Wear loose-fitting pants or skirts instead of tight-fitting pants

• Not use scented soaps, detergents, or bubble baths

• Not apply soap directly to your genitals

• Use your fingertips and not washcloths for washing the vulva

• Pat the vulva dry after washing, and don’t rub

• Not use feminine sprays or douches

Key points about lichen sclerosus

• Lichen sclerosus is a long-term skin condition that mostly affects the genital and anal areas. It causes your affected skin to become thin, white, and wrinkly.

• It is due to inflammation and other skin changes in the affected area.

• Common symptoms include itching, irritation, and pain during sex.

• Most people with will need long-term treatment to manage their symptoms.

• It increases your risk of squamous cell skin cancer. You and your healthcare provider should check for signs of this.

• Good hygiene may also help reduce some symptoms.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.

• Before your visit, write down questions you want answered.

• Bring someone with you to help you ask questions and remember what your provider tells you.

• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are and when they should be reported.

• Ask if your condition can be treated in other ways.

• Know why a test or procedure is recommended and what the results could mean.

• Know what to expect if you do not take the medicine or have the test or procedure.

• If you have a follow-up appointment, write down the date, time, and purpose for that visit.

• Know how you can contact your healthcare provider if you have questions, especially after office hours or on weekends and holidays.