Lichen sclerosus

Lichen sclerosus is a long-term skin condition that causes patches of white, itchy skin, most commonly affecting the genital and anal areas. While there’s no cure, treatment can help control symptoms and prevent serious complications like scarring and an increased cancer risk.

Table of contents

• What is lichen sclerosus?
• Who gets lichen sclerosus?
• Signs and symptoms
• What causes lichen sclerosus?
• How is it diagnosed?
• Treatment options
• Taking care of yourself
• Possible complications
• Long-term outlook

What is lichen sclerosus?

Lichen sclerosus is a chronic skin condition that causes patches of skin to become thin, white, and wrinkled. It most often affects the genital and anal areas, though it can appear on other parts of the body^[1]. The condition is not caused by an infection and is not contagious, meaning you cannot catch it from another person or spread it through sexual contact^[3].

The affected skin typically develops small white spots that can join together over time to form larger patches. These patches often look like wrinkly parchment or tissue paper^[2]. The condition affects the outer layers of skin, causing the epidermis (the outer layer of skin) to become thin while inflammatory cells (cells involved in the body’s defense response) invade the dermis (the layer beneath the surface)^[7].

balanitis xerotica obliterans, white spot disease, lichen sclerosus et atrophicus, kraurosis vulvae

Who gets lichen sclerosus?

Lichen sclerosus can affect anyone at any age, including children. However, it is much more common in women than in men. The condition most frequently affects women after menopause (when monthly periods stop), particularly those between ages 40 and 60^[1]. Young girls who haven’t yet gone through puberty also have a higher risk of developing the condition^[2].

The exact number of people affected is not fully known because many people may not have symptoms or the condition may be misdiagnosed. Studies suggest it affects somewhere between 1 in 300 and 1 in 1000 people in the general population^[4]. In men, the condition is less common and most often affects those who still have their foreskin^[2].

Certain factors may increase your risk. You may be more likely to develop lichen sclerosus if you have an autoimmune disease (a condition where the body’s defense system mistakenly attacks healthy cells), such as thyroid disease, type 1 diabetes, or vitiligo. People with diabetes or obesity may also have a slightly higher risk^[2]. The condition can run in families, with about 10% of patients having other family members with the same condition^[4].

Signs and symptoms

In the early stages, you might not notice any symptoms at all. Some people only discover they have lichen sclerosus during a routine medical examination. When symptoms do appear, they usually affect the genital and anal areas, though the condition can occasionally affect other body parts like the neck, shoulders, chest, upper back, wrists, or mouth^[1].

The most common symptoms include:

• Itching, which can be severe and is often worse at night
• White patches of skin that may be smooth or crinkled
• Skin that tears or bruises easily, even from light rubbing or scratching
• Soreness, burning, or discomfort
• Pain during sex
• Bleeding or blistering of the affected skin
• Painful bowel movements if the area around the anus is affected
• Difficulty or pain when urinating^[1]

In women, the condition most often affects the area around the opening to the vagina (called the vulva) and the anus. In men, it typically affects the foreskin and the tip of the penis. If left untreated, the vulva or foreskin may shrink or tighten, which can make erections painful in men or cause discomfort during sex in women^[3].

It’s important to note that lichen sclerosus does not affect the inside of the vagina or other internal reproductive organs like the uterus^[7].

What causes lichen sclerosus?

The exact cause of lichen sclerosus is not fully understood. Researchers believe it is likely an autoimmune condition, meaning the body’s immune system mistakenly attacks and damages healthy skin cells^[3]. This theory is supported by the fact that lichen sclerosus often occurs alongside other autoimmune diseases, such as alopecia areata (patchy hair loss), vitiligo (loss of skin color), autoimmune thyroid disease, and pernicious anemia^[4].

Several other factors may play a role in who develops lichen sclerosus:

• Genetics: The condition can run in families, suggesting that certain genes may make some people more susceptible
• Hormonal factors: Changes in hormone levels, particularly low estrogen, may contribute to the development of the condition
• Previous skin injury: Trauma or damage to the skin, including from injury or sexual abuse, may trigger lichen sclerosus in some people
• Environmental factors: Certain external factors may act as triggers in genetically susceptible individuals^[4]

It’s important to understand that lichen sclerosus is not caused by poor hygiene and is not an infection. You cannot give it to someone else through close contact or sexual activity^[3].

How is it diagnosed?

If you have symptoms of lichen sclerosus, you should see your doctor. The diagnosis often begins with a careful physical examination of the affected skin. In many cases, a doctor can recognize lichen sclerosus just by looking at the characteristic white patches^[8].

However, to confirm the diagnosis or rule out other conditions, your doctor may recommend a skin biopsy (removing a small sample of affected tissue to examine under a microscope). A biopsy is particularly important if:

• The diagnosis is uncertain
• Your skin doesn’t respond to steroid treatment
• Your doctor needs to rule out cancer or other skin conditions^[8]

During a biopsy, a small piece of skin is removed and sent to a laboratory where it is examined for the characteristic changes seen in lichen sclerosus. The procedure is usually done under local numbing medicine to minimize discomfort.

You may be referred to a specialist, such as a dermatologist (skin doctor), gynecologist (women’s health doctor), or urologist (specialist in urinary and male reproductive organs), for further evaluation and treatment^[8].

Treatment options

While lichen sclerosus cannot be cured, treatment can help control symptoms, improve the appearance of your skin, and reduce the risk of complications like scarring. Even if your symptoms improve, they often come back, so long-term treatment and regular check-ups are important^[1].

Medicated ointments

The main treatment for lichen sclerosus is a very strong prescription steroid ointment, most commonly clobetasol propionate. This is a topical corticosteroid (a cream or ointment applied directly to the skin that reduces inflammation). When you first start treatment, you’ll typically apply the ointment to the affected skin once a day for several weeks to months until your symptoms improve^[8].

After the initial treatment period, your doctor will likely recommend using the ointment less frequently to prevent symptoms from returning. Many people use it two or three times a week as maintenance treatment^[13]. Your doctor will monitor you for side effects, although significant skin thinning is uncommon when the medication is used as directed on genital skin^[15].

If you cannot use steroid ointments or they don’t work well enough, your doctor may recommend other options, such as calcineurin inhibitors (medications that suppress the immune system) like tacrolimus ointment^[8].

Surgery

In some cases, surgery may be necessary. For men with severe lichen sclerosus affecting the foreskin, removal of the foreskin (circumcision) may be recommended. This is often effective, though the condition can sometimes recur^[8]. For women, surgery might be needed if severe scarring has narrowed the vaginal opening or caused other structural changes that interfere with urination or sexual activity^[3].

Other treatments

For people who haven’t responded well to standard treatments, other options may include light therapy, oral medications like retinoids (derived from vitamin A), or other immune-suppressing drugs. However, these are generally considered when first-line treatments have not been successful^[9].

Taking care of yourself

In addition to medical treatment, there are many things you can do at home to help manage your symptoms and protect your skin:

Washing and moisturizing

• Wash with an emollient (a moisturizing soap substitute) instead of regular soap, as regular soaps can irritate sensitive skin
• Avoid scented soaps, bubble baths, shower gels, and feminine hygiene products
• Gently pat the area dry after urinating rather than wiping vigorously
• Apply a barrier cream or ointment, such as petroleum jelly, to protect the affected areas
• Use moisturizing emollient creams or ointments regularly to keep skin soft and protected^[3]

Clothing and activities

• Wear cotton or silk underwear, which are gentler on sensitive skin
• Avoid tight or restrictive clothing that can rub against affected areas
• Wash underwear with water only, without detergent
• Avoid or use fragrance-free panty liners if you need them
• Avoid activities like cycling or horseback riding during flare-ups, as these can cause friction^[3]

Other helpful tips

• Use lubricant if sexual activity is uncomfortable
• Try not to scratch or rub the affected skin, even when itchy
• Apply cold, wet cloths to reduce itching
• If you smoke, try to quit, as smoking may worsen the condition^[3]

Possible complications

Without proper treatment, lichen sclerosus can lead to several complications. The affected skin can become scarred and tight over time, causing permanent structural changes^[3].

Scarring and structural changes

In women, the vulva may shrink, with the clitoris and the small inner lips around the vaginal opening often affected. Parts of the skin can stick together (called fusion or adhesion), which can make it difficult to use tampons or cause pain during sex. In severe cases, the vaginal opening may become narrower. Sometimes, repeated tearing and healing creates thick scar tissue that further reduces flexibility^[17].

In men, the foreskin may tighten, making it impossible to pull back and causing painful erections. The opening through which urine flows may become narrowed^[3].

Functional problems

Scarring and tightness can cause discomfort when urinating or having bowel movements. Sexual activity may become painful or, for some people, impossible. These changes can significantly affect quality of life and relationships^[3].

Cancer risk

Lichen sclerosus increases the risk of developing skin cancer on the vulva, penis, or anus. The risk is low (less than 5%), but it is important to be aware of it^[6]. Signs to watch for include a lump, thickening of the skin, or an ulcer (open sore) that doesn’t heal. If you notice any of these changes, see your doctor right away^[3].

Early treatment with steroid ointments and regular monitoring can help reduce the risk of cancer and prevent or minimize other complications^[14].

Long-term outlook

Lichen sclerosus is a chronic condition, meaning it is long-lasting and typically requires ongoing treatment. With proper care, symptoms can often be controlled, and the risk of complications can be reduced^[1].

Spontaneous remission (the condition going away on its own) is rare in adults. However, in children, particularly girls before puberty, the condition sometimes improves on its own after puberty, though this is not guaranteed^[9].

Because symptoms often return even after successful treatment, it’s important to continue using maintenance treatment as prescribed by your doctor and to attend regular follow-up appointments. Most doctors recommend check-ups every 6 to 12 months to monitor your condition and check for any signs of complications^[1].

Regular self-examination is also important. Check the affected areas monthly for any changes, such as new lumps, thickening, color changes, or sores that don’t heal. Report any concerning changes to your doctor promptly^[17].

Living with lichen sclerosus can be emotionally challenging. The condition can affect self-esteem, relationships, and overall quality of life. If you’re struggling, consider talking to a therapist or joining a support group where you can connect with others who understand what you’re going through^[11].

With early diagnosis, appropriate treatment, and regular monitoring, most people with lichen sclerosus can manage their symptoms effectively and maintain a good quality of life.