Lichen Sclerosus

What is lichen sclerosus?

Lichen sclerosus is a disorder that can affect the skin on your vulva (the area outside your vagina), anus or penis. It causes your skin to become discolored, thin, irritated and itchy. Blisters and sores (usually from persistent itching) may also form on your genitals. Rarely do these symptoms appear on other body parts.

Untreated, lichen sclerosus can lead to scarring, making it difficult or painful to have sex, urinate or have a bowel movement. There is no cure for lichen sclerosus, but symptoms can be controlled. Healthcare providers can treat symptoms, but they may return after treatment. Having lichen sclerosus increases your chances of developing a type of skin cancer called squamous cell carcinoma if left untreated.

How common is lichen sclerosus?

Lichen sclerosus is rare. About 200,000 people in the United States have the condition. It affects people of all genders. People assigned female at birth are more likely to develop the condition, but people assigned male at birth may be affected, too.

Lichen sclerosus (also called white spot disease) is most common in people who have been through menopause. It’s most likely to develop between ages 40 and 60. Girls who haven’t started puberty also have a higher risk. Less commonly, lichen sclerosus affects men who haven’t been circumcised.

What are the symptoms of lichen sclerosus?

Lichen sclerosus symptoms can range from mild to severe. If you have a mild case of lichen sclerosus, you may not experience any symptoms. In women, symptoms usually affect the vulva, anus and perineum (the area between the anus and the vulva). The condition can also affect skin on other body parts, such as your neck, breasts, torso, upper back, wrists and mouth.

In uncircumcised men, lichen sclerosus causes the foreskin of the penis to be irritated and itchy. The opening at the top of your foreskin can become scarred and narrowed, leading to painful erections.

Symptoms include:

• Itching and irritation: Vulva and vaginal itching and discomfort can be severe. Riding a bike or wearing tight clothing can make symptoms worse. In addition to an itchy vulva, you may feel burning in your vagina.
• Skin changes: Small white spots may appear on your genitals. As the white patches grow, the skin becomes white, smooth, shiny, thin or transparent. Sometimes the area may look “crinkled.” These changes usually affect the skin around the vulva and the anus in women, making a figure-eight pattern covering the area. In men, the foreskin on the penis looks white and shiny.
• Ulcers and sores: Blisters, fissures (cracks) and genital sores can develop, especially if you’ve scratched the area to relieve itching. The skin may bruise, crack and bleed with the slightest touch.
• Scarring: Untreated, lichen sclerosus can lead to scarring around your vulva, and your clitoral hood may look flat – so that your anatomy looks different. There may be scarring on your anus or penis. Scarring can cause problems peeing or pooping (constipation), and it can lead to painful sex (dyspareunia).

What causes lichen sclerosus?

Healthcare providers aren’t sure what causes lichen sclerosus. Experts believe that lichen sclerosus behaves much like an autoimmune disease. Autoimmune disorders cause the body’s immune system to attack healthy cells.

Genetics and hormonal changes may also determine who gets the disorder. In some cases, lichen sclerosus develops after someone has experienced trauma, such as an injury or sexual abuse. Lichen sclerosus is not a sexually transmitted infection (STI), and it’s not contagious.

How is lichen sclerosus diagnosed?

Your healthcare provider will examine you and ask about your symptoms. In some cases, your provider may order a biopsy. During this procedure, your provider takes a skin sample and sends it to a lab for testing.

Providers treat lichen sclerosus with:

• Topical medicine: Strong corticosteroid ointments and creams can relieve itching and inflammation. Follow your provider’s instructions about when and how to apply the medicine to your skin.
• Phototherapy (light therapy): Providers use narrowband ultraviolet B (NB-UVB) light to treat lichen sclerosus. Using a special lamp, your provider shines a light on your skin over a series of several treatments.
• Immunosuppressive medications: These drugs weaken your immune system so it no longer attacks healthy cells.
• Circumcision: You may need surgery to remove the foreskin at the tip of your penis if you’re uncircumcised. Circumcision can relieve pain and pressure.

An essential part of treatment for lichen sclerosus includes regular checkups with your provider. Your provider will watch for signs of skin cancer and help you prevent scarring around your genitals.

Can I prevent lichen sclerosus?

There’s no way to prevent lichen sclerosus. You may be able to relieve symptoms with lifestyle changes.

To reduce friction and irritation, you should:

• Avoid horseback riding and long bike rides.
• Wear loose-fitting underwear and clothing.
• Use unscented soaps and laundry detergent. Avoid bubble baths — the suds can cause irritation that makes itching worse.
• Change out of wet swimsuits and clothing right away.

What is the outlook for people with lichen sclerosis?

Lichen sclerosus is a chronic (lifelong) condition. Treatment for lichen sclerosus can relieve symptoms, but they may come back. For some people, genital scarring can cause problems going to the bathroom or having sex. Some of these problems may be severe.

Is lichen sclerosus a serious condition?

Lichen sclerosus isn’t life-threatening, but it can cause extreme discomfort without treatment. People with lichen sclerosus have a higher risk of developing a type of skin cancer called squamous cell carcinoma. If you have lichen sclerosus, it’s essential to see your provider for regular checkups. Your healthcare provider will monitor your lichen sclerosus closely for signs of skin cancer.

When should I see my healthcare provider about lichen sclerosis?

If you have irritation, itching or discomfort in the genital or anal area, see your provider. It’s essential to determine what’s causing your symptoms so you can receive treatment. Many conditions cause symptoms that are similar to lichen sclerosus, including sexually transmitted diseases (STDs).

If you have lichen sclerosus and your symptoms return after treatment, see your provider right away. By treating symptoms immediately, you may be able to prevent scarring. Your provider will also monitor you for signs of skin cancer.

What foods should I avoid with lichen sclerosus?

There isn’t a recommended lichen sclerosus diet. But some studies show that dietary changes can relieve symptoms. Talk to your provider about foods you should avoid and how to make healthy choices.

Is lichens sclerosis an autoimmune disease?

There’s not enough data available to classify lichens sclerosis as an autoimmune disease. But people with lichen sclerosus do commonly have autoimmune disorders — like alopecia areata, vitiligo, pernicious anemia, Type 1 diabetes, and some thyroid disorders. The close associations between these conditions and lichens sclerosis suggest that the condition may arise from autoimmune responses in your body.

What causes lichen sclerosus to flare up?

Lichen sclerosus may result from a variety of causes: an autoimmune response in your body, genetics, hormone changes, or even injury. Research is ongoing to pinpoint exact causes.

How do you calm lichen sclerosus?

Your provider may recommend anti-itch creams, immunosuppressive drugs and phototherapy. You can take care of your skin by avoiding products that contain harsh chemicals, and wearing soft, breathable fabrics that don’t irritate your skin.

Can you reverse lichen sclerosus?

No. But treatments are available to ease your symptoms and prevent progression of the disease.

A note from Cleveland Clinic

If you have lichen sclerosus, be open and honest with your healthcare provider about your symptoms. Be sure to tell your provider right away if symptoms get worse or come back after treatment. Through regular checkups, your provider will track your health, treat your symptoms and help you prevent scarring and long-term problems. Because people with lichen sclerosus have a higher risk of squamous cell carcinoma, you’ll need to see your provider often to check for signs of skin cancer.