Lichen sclerosus is a long-lasting skin condition that causes white, thin patches of skin, most often on the genital and anal areas. While it can affect anyone, it is most common in women over 50 and, less commonly, in young girls before puberty. The condition is not contagious and cannot be spread through sexual contact, but it does require consistent treatment to prevent complications such as scarring, pain, and an increased risk of skin cancer in the affected areas.

Who Gets Lichen Sclerosus?

Lichen sclerosus is considered a relatively rare condition, though its exact prevalence remains unclear because many people with mild symptoms never seek medical attention or receive a proper diagnosis. In the general population, estimates suggest it affects somewhere between 1 in 300 to 1 in 1,000 people, with some sources indicating that approximately 200,000 people in the United States live with this condition.^[1][2]

The condition shows a strong preference for certain groups of people. Women are significantly more affected than men, with the female to male ratio varying from as balanced as 1:1 in some studies to as high as 10:1 in others. Age plays an important role too. In women, lichen sclerosus tends to appear during two distinct periods of life: the first peak occurs in girls between eight and thirteen years old, while the second and larger peak happens in women during their fifth and sixth decades of life, typically between ages 40 and 60, especially after menopause (the time when a woman’s monthly periods stop permanently).^[4][1]

In men, the condition is less common and typically affects those who still have their foreskin, meaning that circumcision (surgical removal of the foreskin) greatly reduces the risk. Boys and men between puberty and age 60 are most likely to develop symptoms. Lichen sclerosus can affect people of any race or ethnicity, with no particular racial predilection noted in medical research.^[3][7]

About 10% of patients report having other family members with the same condition, suggesting that genetics may play a role in who develops lichen sclerosus. Interestingly, prepubertal girls and postmenopausal women share the highest risk, pointing to possible hormonal influences.^[4][2]

What Causes Lichen Sclerosus?

Despite decades of research, the exact cause of lichen sclerosus remains unknown. However, medical experts have identified several factors that appear to contribute to its development, with the strongest evidence pointing toward an autoimmune origin. An autoimmune disease occurs when the body’s immune system, which normally protects against harmful bacteria and viruses, mistakenly attacks its own healthy cells and tissues.^[2][3]

The autoimmune theory is supported by several observations. Many people with lichen sclerosus also have other autoimmune conditions, such as autoimmune-related thyroid disease, pernicious anemia, vitiligo (a condition causing loss of skin color in patches), type 1 diabetes, or alopecia areata (patchy hair loss). Research has found increased levels of specific immune cells and inflammatory substances in affected skin, along with the presence of certain autoantibodies that target the body’s own tissues.^[4][6]

Genetics appear to play a role, as the condition runs in families in about 10% of cases. Rare instances exist where parents may pass lichen sclerosus to their biological children through genetic inheritance. Hormonal factors, particularly low levels of the hormone estrogen, have also been implicated, though the exact relationship remains unclear. Some studies have found altered hormone levels in affected tissue, especially in postmenopausal women.^[2][6]

Environmental triggers may also contribute. In some cases, lichen sclerosus develops after trauma to the skin, such as an injury or, in sensitive situations, sexual abuse. This is sometimes referred to as the Koebner phenomenon, where skin lesions appear at sites of injury. Older research suggested a link to bacterial infections, particularly Borrelia bacteria (which cause Lyme disease), but this connection remains controversial and has not been confirmed in most recent studies.^[2][4]

Risk Factors for Developing Lichen Sclerosus

While lichen sclerosus can affect anyone at any age, certain factors increase the likelihood of developing this condition. Understanding these risk factors can help with early recognition and diagnosis, though having one or more risk factors does not mean you will definitely develop the disease.^[2]

The most significant risk factor is being a postmenopausal woman, particularly between the ages of 40 and 60. This group experiences the highest incidence of lichen sclerosus. Young girls who have not yet gone through puberty also face an increased risk, representing the other peak age group for this condition.^[1][2]

For men, being uncircumcised substantially increases risk. Men who still have their foreskin are much more likely to develop lichen sclerosus on the penis compared to circumcised men. This has led medical experts to recognize circumcision as a protective factor against the condition.^[7]

Having an autoimmune disease creates a slightly elevated risk for lichen sclerosus. Conditions such as autoimmune thyroid disease, autoimmune-related anemia, vitiligo, type 1 diabetes, and alopecia areata are all associated with higher rates of lichen sclerosus. People with allergies may also have a marginally increased risk.^[2][7]

Other factors that may increase risk include having a family history of the condition, which occurs in about 10% of patients. Recent research has also suggested that diabetes and having a body mass index greater than 30 (classified as overweight or obesity) might contribute to increased risk. Previous trauma to the genital area, including injury or sexual abuse, can sometimes trigger the development of lichen sclerosus in susceptible individuals.^[2][4]

Recognizing the Symptoms

Lichen sclerosus presents with a range of symptoms that can vary significantly from person to person. In some cases, especially in the very early stages, people may have no symptoms at all and only discover the condition during a medical examination for another reason. However, most people eventually develop noticeable signs that affect their quality of life.^[1][7]

The most common early sign is the appearance of small white spots on the skin. These spots are typically smooth and slightly shiny when they first appear. Over time, they can grow larger and merge together to form white patches that often look wrinkled, crinkled, or similar to thin tissue paper or parchment. In people with darker skin tones, the patches may appear lighter or darker than the surrounding skin rather than white.^[2][3]

Itching is the most frequently reported symptom of lichen sclerosus, particularly affecting the genital and anal areas. This itching can be intense and persistent, often becoming more noticeable at night. Many patients also experience soreness, burning sensations, or general discomfort in the affected areas. The skin becomes extremely fragile and delicate, meaning that even minor rubbing or scratching can cause it to tear, bleed, or bruise. Some people develop blisters or open sores, usually as a result of persistent itching and scratching.^[1][3]

When lichen sclerosus affects the genital area, it can cause specific functional problems. Women may experience pain during sexual intercourse, a condition called dyspareunia. This happens because the skin can become tight, scarred, or tear easily. In men, the foreskin may become tight, making it difficult or impossible to pull back, a condition known as phimosis. Erections can become painful, and some men notice unusual fluid discharge from the penis.^[2][7]

Both men and women may experience difficulties with urination. Pain while urinating, called dysuria, is common. The stream of urine may become weak, or it might spray in different directions instead of flowing normally. In rare cases, narrowing of the opening through which urine exits the body can occur. Bowel movements can also become painful or difficult if the anal area is affected, and some people notice bleeding during or after having a bowel movement.^[2][7]

While lichen sclerosus most commonly affects the genital and anal areas (in 85 to 98% of cases), it can occasionally appear on other parts of the body. Extragenital lichen sclerosus, which occurs in only 15 to 20% of cases, may affect the neck, shoulders, chest, upper back, breasts, thighs, wrists, or even the mouth. However, lichen sclerosus typically does not affect mucous membranes themselves, such as the inside of the vagina or the oral cavity.^[4][2]

Prevention Strategies

Because the exact cause of lichen sclerosus remains unknown, there are no proven methods to prevent its initial development. However, once diagnosed, several strategies can help prevent symptom flare-ups, reduce irritation, and minimize the risk of complications such as scarring and skin cancer.^[3][16]

Maintaining good genital hygiene without over-cleaning is important. People with lichen sclerosus should avoid using regular soap, bubble baths, shower gels, and especially any scented or perfumed products on the affected areas. Instead, washing with an emollient soap substitute (a gentle, moisturizing cleanser recommended by a doctor or pharmacist) and plain water is preferable. After using the toilet, gently dabbing the area dry rather than rubbing helps prevent damage to the fragile skin.^[3][16]

Regular application of barrier creams or ointments, such as petroleum jelly, to affected areas can provide protection against irritation from sweat, friction, and urine. Using these protective products before exercise or before going to the toilet can be particularly helpful. Some people find it beneficial to apply moisturizer at consistent times, such as twice daily, to keep the skin well-hydrated and protected.^[16]

Clothing choices can make a significant difference in comfort and symptom management. Wearing loose-fitting, breathable underwear made from cotton or silk allows air circulation and reduces moisture buildup and friction. Avoiding tight or restrictive clothing, such as tight-fitting underwear or pants, helps prevent irritation. Panty liners should be avoided when possible, or fragrance-free versions used if necessary. Washing underwear with water only, rather than with detergent, can reduce exposure to potential irritants.^[3][16]

Activities that create friction or pressure on the genital area may need to be modified or temporarily avoided during flare-ups. Activities like cycling, horse riding, or using exercise bikes might aggravate symptoms until they improve. When engaging in sexual activity, using a lubricant can reduce friction and make intercourse more comfortable.^[3][16]

Smoking should be avoided, as it may worsen the condition. People with lichen sclerosus should also resist the urge to scratch or rub affected skin, even when itching is severe, as this can cause tearing, bleeding, and increased scarring. Finding alternative ways to manage itching, such as applying cool compresses or using prescribed medications, is important.^[3]

How Lichen Sclerosus Changes the Body

Understanding what happens inside the body when lichen sclerosus develops helps explain why the condition causes its characteristic symptoms and complications. The disease primarily affects the structure and function of the skin through a complex process involving inflammation and abnormal tissue changes.^[4][6]

The skin consists of several layers. The outer layer, called the epidermis, serves as a protective barrier. Beneath it lies the dermis, which contains blood vessels, nerve endings, hair roots, sweat glands, and important structural proteins like collagen and elastic fibers that give skin its strength and flexibility. In lichen sclerosus, inflammation targets the upper portion of the dermis, called the papillary dermis, causing significant disruption to normal skin architecture.^[7]

One of the hallmark changes in lichen sclerosus is the infiltration of inflammatory cells, particularly activated T cells (a type of immune cell), into the affected skin. These immune cells release various chemical messengers called cytokines that promote further inflammation. The presence of these inflammatory cells and cytokines demonstrates the autoimmune nature of the condition, where the immune system inappropriately attacks the body’s own skin tissue.^[4][6]

As inflammation persists, it causes the epidermis to become progressively thinner, a process called atrophy. At the same time, the upper dermis undergoes abnormal changes in its connective tissue. The elastic fibers and collagen that normally provide structure and elasticity begin to break down and become disorganized. This destruction of elastic and collagen fibers explains why the skin takes on a wrinkled, fragile appearance and loses its normal resilience.^[7]

Research has identified several specific biological changes in lichen sclerosus tissue. Blood vessels in the affected skin may be damaged, and there appears to be reduced blood flow to the area, creating a state of low oxygen supply called ischemia. Scientists have found decreased levels of vascular endothelial growth factor (VEGF), a protein important for blood vessel formation, and increased levels of proteins that promote the accumulation of scar tissue in the dermis. There is also evidence of altered function in fibroblasts, the cells responsible for producing collagen and other structural proteins.^[6]

Over time, if left untreated, the ongoing inflammation and tissue damage lead to fibrosis (excessive scarring) in the upper dermis. This scarring process is progressive and can result in permanent structural changes to the affected area. The combination of epidermal thinning, dermal scarring, and loss of normal elastic tissue creates skin that is extremely fragile, easily damaged, and prone to tearing, bleeding, and further scarring. These physical changes in the skin’s structure directly cause many of the symptoms people experience, including pain, difficulty with urination and sexual activity, and the characteristic white, wrinkled appearance of the affected skin.^[9]

In the genital area specifically, progressive scarring can lead to what are called architectural or anatomical changes. These include fusion (sticking together) of skin structures, narrowing of openings, and loss of normal anatomy. In women, the clitoris may become buried under fused tissue, and the labia may shrink or disappear. In men, the foreskin may become so tight it cannot be pulled back, and the opening for urine flow may narrow. These structural changes are often irreversible without surgical intervention and represent the most serious long-term complications of untreated lichen sclerosus.^[17][9]