Lichen Sclerosus: Everything You Need to Know

Lichen sclerosus (LS) is a chronic inflammatory skin condition. Chronic means that the condition lasts for a long time, often years or for the rest of your life.

The word "lichen" refers to the way the skin appears, often resembling lichen growing on rocks. "Sclerosus" is Latin for hard or hardening.

While LS can affect any skin surface, it’s most commonly found around the genitals. In men, it usually affects the foreskin and tip of the penis.

Without treatment, LS can significantly affect quality of life, causing chronic discomfort and pain during sexual activity

The main symptoms of lichen sclerosus are skin changes and intense itching. Your genitals are the most common place for LS to develop. When it develops here, it’s called genital lichen sclerosus 

Itchiness due to LS isoften:

• The most common and distressing symptom

• Worse at night

• Disruptive to sleep

• Strong enough to lead to scratching and skin damage

If you have LS, your affected skin may:

• Appear whitish or have a porcelain or mother-of-pearl appearance

• Be crinkly or leathery

• Bruise easily

• Have blistering or ulcers, in severe cases

LS on the penis may also come with:

• Soreness or burning

• Painful erections

• Tight foreskin

• Inability to pull back the foreskin (phimosis)

• Painful intercourse or masturbation

• Difficulty urinating and pain around the urethra

When LS occurs on another part of your body, it’s referred to as extragenital LS. Extragenital LS makes up about 15 to 20 percent of cases.

Some of the most common locations include your:

• Neck

• Shoulders or upper trunk

• Wrist or forearms

• Thighs

LS Symptoms in Females

LS is more common in females than males. When LS develops around the female genitals, it’s called vulvar lichen sclerosus or vulval lichen sclerosus. It can cause pain or itchiness around the clitoris, labia minora, or other parts of the genitals.

The cause of LS isn’t entirely known, but it’s considered an autoimmune disease. Autoimmune diseases are those caused by an overreaction of your immune system, where it attacks healthy cells.

A combination of genetic susceptibility and environmental factors may both contribute to the development of LS, but no single associated gene mutation has been identified.

While the exact causes of lichen sclerosus remain elusive, some risk factors have been identified, including:

• Biological sex: LS is more common in females than males, with some studies suggesting that the prevalence is 10 times higher in females. 

• Age: LS affects men at any age. The average age at which LS is first reported in women is between 52 and 60. Girls between the ages of 8 and 13 are also at higher risk.

• Family history: LS is more common in people with a family history. But keep in mind that most of the research examining the genetic susceptibility for LS has looked at girls and women.

• Other autoimmune conditions: People with other autoimmune diseases, such as rheumatoid arthritis or thyroid disease, also seem to be at a higher risk of LS.

• Local skin trauma or chronic irritation: LS often appears in areas of previous skin injury, surgery, or chronic irritation. This is called the Koebner phenomenon. 

• Circumcision status: Lichen sclerosus seems to be more common in men who are uncircumcised.

Receiving a diagnosis of LS usually starts by visiting your primary healthcare provider, who may:

• Consider your personal and family medical history

• Perform a physical exam

• Ask you about your symptoms

Your healthcare provider might suspect LS based on the appearance of your skin, but to confirm the diagnosis, they may refer you to a skin specialist called a dermatologist to receive a skin biopsy. 

A skin biopsy involves removing a small piece of the affected tissue so that doctors can analyze it in a lab for characteristic signs of the disease. 

This biopsy is needed to differentiate LS from other conditions, such as:

• Vitiligo

• Fungal infections

• Contact dermatitis

• Psoriasis

Lichen sclerosus treatment primarily involves applying topical corticosteroids in the form of a cream to reduce your symptoms.

The most commonly prescribed medication is a very potent topical steroid called clobetasol propionate.

Your doctor will typically prescribe a regimen consisting of two phases:

• Initial intensive phase: This might involve applying the cream once or twice daily for several weeks or months, depending on the severity of your symptoms.

• Maintenance phase: Once symptoms are under control, the frequency is gradually reduced, often to a few times a week. This maintenance is critical to keep inflammation low and prevent flare-ups.

Your doctor will likely want to follow up with you regularly to monitor you for any potential side effects, such as skin thinning.

For individuals who cannot tolerate or don't fully respond to topical corticosteroids, other treatment options may be considered, including:

• Topical calcineurin inhibitors: These non-steroidal immunomodulators, such as tacrolimus, reduce inflammation by tamping down immune system activity. 

• Phototherapy: In rare cases of widespread extragenital LS, light therapy might be explored. It involves shining a very bright and special light on your skin. 

• Surgery: In specific circumstances, surgery may be necessary to treat complications around affected areas. For men, circumcision may be recommended to remove the foreskin.  

Supportive Treatments

Beyond medication, several supportive measures may help you manage your LS symptoms, including:

• Gentle skin care: Use mild, unperfumed soaps and detergents on your skin. Patting your skin dry rather than rubbing may help reduce irritation. 

• Emollients/barrier creams: Applying moisturizers or barrier creams can help protect fragile skin and reduce dryness and irritation.

• Avoiding irritants: Identify and avoid anything that seems to trigger or worsen your symptoms, such as certain fabrics. 

• Managing secondary infections: If you have LS, you’re more prone to yeast or bacterial infections. Prompt treatment of these can prevent further irritation.

• Pain management: For severe pain, your doctor might suggest over-the-counter pain relievers or, in some cases, specific nerve pain medications.

Lichen Sclerosus and Testosterone

In girls and women, LS used to be treated with topical testosterone. This fell out of favor without enough evidence to support it. For men, this was never a typical treatment. Steroid ointments are generally preferred in men. In fact, there doesn’t appear to be any link between lichen sclerosus and testosterone in men: Men with LS are not more likely to have low testosterone levels or have been treated with testosterone.

Because the cause of LS isn’t fully understood, there isn’t a guaranteed way to prevent it. That said, there are a few potential ways to lower your risk and minimize complications: 

• Minimize trauma and irritation to the affected areas: Trauma to your skin can trigger or worsen LS lesions. While you can't completely minimize friction, you can adopt habits that reduce friction and irritation.

• Early diagnosis and consistent treatment: Once diagnosed, it’s important to adhere strictly to your prescribed treatment, especially with topical corticosteroids. This proactive approach can reduce inflammation that leads to scarring.

• Regular self-examination and doctor visits: Knowing your body and regularly inspecting the affected areas allows you to spot any changes early. This includes new lesions, persistent irritation, or suspicious growths.

• Managing associated autoimmune conditions: If you have other autoimmune diseases, ensuring they are well-managed can contribute to your overall health and may potentially reduce systemic inflammation.

Lichen sclerosus is a chronic, inflammatory skin condition that primarily affects the genital area. It's characterized by intense itching and whitish patches.

While the exact cause of LS remains unknown, it's considered an autoimmune disease. It’s likely that genetics and environmental factors contribute to its development. 

If you suspect you may have LS, it’s important to talk to a specialist in dermatology for a proper diagnosis. The most common treatment involves potent topical corticosteroids to control inflammation, relieve symptoms, and prevent disease progression.

It’s also important to attend all your follow-up appointments with your healthcare provider to monitor for complications and assess if treatment is working.

Can Men Get Lichen Sclerosus?

Yes, men can get lichen sclerosus, although it is less common than in women. In men, LS most frequently affects the foreskin and tip of the penis, a condition sometimes referred to as balanitis xerotica obliterans.

Can Lichen Sclerosus Spread to Other Parts of the Body?

While lichen sclerosus primarily affects the genitals, it can occasionally appear on other parts of the body, such as your trunk, neck, or wrists. This is known as extragenital LS. However, it only makes up about 15 to 20 percent of cases. LS is not contagious, and it does not spread from one person to another or from one part of the body to another.

Is Lichen Sclerosus Contagious?

No, lichen sclerosus is an inflammatory skin condition, not an infectious one. It can’t be passed from person to person through sexual contact, casual touch, or any other means.

Does Lichen Sclerosus Increase the Risk of Cancer?

There is a small increased risk of developing squamous cell carcinoma (a type of skin cancer) in areas affected by long-standing lichen sclerosus, particularly in the vulva for women and the penis for men. 

What’s the Difference Between Lichen Sclerosus and Lichen Planus?

Lichen planus is another type of autoimmune skin disease. Lichen sclerosus typically causes your skin to take on a wrinkled and white appearance. Lichen planus often causes itchy purple-red patches that affect mucous membranes, such as the inside of your mouth.