Lichen sclerosus fact sheet

What is this?

Lichen sclerosus is an uncommon, chronic, inflammatory skin condition that affects the genital area, resulting in white patches and scarring. It can sometimes extend to involve the anus and groins. Symptoms of itch, burning and soreness are common, but often there are no symptoms.

How do you get it?

Lichen sclerosus can occur at any age. It is more common in people over the age of 50 years who have a vagina.

Lichen sclerosus is not contagious and cannot be passed from one person to another through skin to skin contact.

Lichen sclerosus most likely has a genetic and immune basis, and sometimes it occurs in families.

Sometimes lichen sclerosus is associated with other diseases related to the immune system, for example:

• diabetes
• thyroid conditions
• pernicious anaemia
• coeliac disease

What are the symptoms?

Vulva (area outside vagina)

If you were born biologically female, lichen sclerosus symptoms can range from very mild to quite severe. Symptoms can include:

• itching, burning and soreness of the genital skin
• skin dryness through loss of oil producing skin glands
• skin surface can be thickened and white
• skin surface can be pale, thinned and fragile in long standing disease
• scratching can result in very thickened white skin, blood blisters and skin-picking
• skin fragility can result in splitting
• damaged skin is prone to secondary infection by yeasts or bacteria which may result in skin soreness
• chronic inflammation can result in scarring and change in the shape of skin surface

Changes to the genital skin may include:

• covering over of the clitoris by skin
• loss of the inner lips (labia minora)
• bands of joined skin above and below the vaginal opening, that can make the vaginal entrance small and result in painful intercourse

Penis

• lichen sclerosus usually affects the tip of the penis and foreskin. This is also called balanitis xerotica obliterans
• sometimes the urethral opening may narrow resulting in difficulty passing urine

Anus

• itching, bleeding or pain
• pain or bleeding when having a bowel movement
• pain during anal sex
• skin bruising or tearing

How do you test for it?

Lichen sclerosus can usually be diagnosed clinically based on characteristic skin changes. Sometimes doctors will take a skin biopsy to help with diagnosis.

How is it treated?

The best treatment is strong steroid ointment or cream. Your doctor can prescribe this. You must use enough to prevent all symptoms (such as itch or soreness) and suppress active disease. Where there have never been symptoms, treatment is still necessary.

Strong steroid ointment or cream can:

• control inflammation
• help smooth out the roughened skin
• prevent or halt scarring

However, it cannot reverse loss of skin architecture.

Serious side effects of treatment are rare and it is more dangerous not to treat this condition. Using steroid ointment or cream does not thin the skin if used correctly.

Once active lichen sclerosus is stabilised, most people are prescribed maintenance therapy to reduce or prevent the skin inflammation coming back. The minimum recommended frequency of maintenance treatment is once per week. Ointments are preferred to creams in most cases.

Are there any complications if not treated?

Untreated lichen sclerosus can result in progressive scarring. There is a small risk of cancer if the disease advances and is untreated.

The risk of cancer is low, and may be more the result of long-term scratching rather than the disease itself.

If you develop any new, thickened area or ulcer that does not go away after 3-4 weeks of daily steroid ointment use, see your doctor for a skin biopsy.

The role of surgery

Scarring can result in narrowing of the vaginal entrance. Penetrative sexual activity can then cause this skin to split. This scarring can be corrected surgically.

In men, sometimes the urethral opening may need dilating (meatal dilatation). If the foreskin becomes tight and difficult to retract (phimosis), circumcision may be needed.

Surgery is not a substitute for ongoing steroid medication.

Is it likely to come back after treatment?

With or without symptoms, a level of ongoing, lifelong treatment is usually recommended and an annual check-up is needed. We encourage people to self-check their genital skin.

The regular use of low irritant, non-perfumed moisturisers (like sorbolene cream) can help with skin dryness.