Lichen sclerosus (LS)

What is lichen sclerosus?

Lichen sclerosus (LS) is a chronic, inflammatory skin disorder that causes patches of skin around the genital area to appear white, thickened and crinkly. It usually affects the vulva but can also extend to the groin and anus. It doesn’t affect the vagina.

The condition can occur in anyone but is ten times more common in women than men. It may occur at any age but is more common in postmenopausal women. It affects around 1 in 80 women and for most of these, it is a lifelong condition that needs to be treated. LS can also be present in pre-pubescent children. It can also occur together with lichen planus.

It is not contagious and can’t be spread through sex.

What causes lichen sclerosus?

The exact cause of LS isn’t known. However, it’s thought that it may be an autoimmune disorder. Researchers also believe that there is a genetic basis to the condition with around 15% of cases having a family history.

Sometimes LS is associated with other autoimmune diseases such as thyroid disease (in 20% of patients), pernicious anaemia, type 1 diabetes or coeliac disease. The condition can also co-exist with other skin conditions. Other factors than are linked to LS include:

• hormonal imbalances
• previous damage to the skin related to other skin conditions.

Signs and symptoms of lichen sclerosus

Symptoms of LS can range from mild to severe, and those with mild disease may not exhibit any symptoms at all. The condition can be localised to one small area or involve extensive areas including the perineum (skin between your vagina and anus), labia minora (inner lips), and the hood of the clitoris.

However, typical symptoms include:

• chronic itch in the vulval or anal area which can come and go
• scratching can cause bruised or torn skin, blisters and ulcers
• skin may also crack and bleed
• pain or bleeding during a bowel movement due to the skin cracking or splitting
• stinging when you urinate
• pain during sex (dyspareunia)

Over time, LS can cause scarring and adhesions which can lead to:

• small white spots that grow into larger white areas that may become wrinkled, crinkly or thickened patches of white skin with splits or fissures.
• smooth white patches on your skin
• burying of the clitoris (phimosis) due to the adhering of the clitoral hood
• shrinkage or resorption of the labia minora so that they disappear
• a tightening of the vaginal entrance

How is lichen sclerosus diagnosed?

Diagnosis is usually done via a clinical examination. Your doctor will ask about your medical history and about the kind of symptoms you have. Your doctor should also examine your vulva and affected areas. They may also do a biopsy (take a small sample of vulval or perianal skin) and send it to a laboratory for testing.

LS is often misdiagnosed because the vulva isn’t examined by a health professional. If you have problems with your vulva, always ask your health professional to examine you especially if you have undergone previous treatment that wasn’t effective.

Treating and managing lichen sclerosus

There is no cure for LS and you won’t be able to get rid of it completely. Treatment aims to reduce symptoms and to prevent it from getting worse and developing into cancer. Typical treatment involves:

Corticosteroid ointment

This is the primary treatment for LS and it aims to reduce pain, itching and inflammation. Ointments are recommended as it is less likely to sting or cause contact dermatitis. Creams are not recommended at all. A thin smear of ointment should be applied to the affected areas and rubbed in gently once or twice a day, depending upon your doctor’s recommendation.

While the ointment will relieve itching within a few days, it will take some time for the skin to improve. This treatment will be ongoing. However, after a few months, you may be able to reduce the frequency of treatment to once or twice a week. Do not stop treatment unless advised to by your health practitioner.

You will also continue to have regular check-ups with your doctor to monitor your condition and check for any side-effects associated with long-term use of topical corticosteroids. This treatment is generally very effective. Long term use of the steroid ointments are recommended and do not damage the skin in LS.

Surgery

In some cases, surgery may be required to remove scar tissue. This is particularly the case if the entrance to the vagina narrows, making sex difficult.

Vulval care

Other lifestyle (vulval care) measures to help reduce symptoms include:

• wash gently once or twice a day, using a soap-free wash and use your fingertips to wash, rather than a wash cloth
• avoid scented bath products and detergents that can irritate the skin
• pat your vulva dry and don’t rub or use baby wipes
• use a lubricant during sex
• avoid rubbing or scratching the affected areas
• wear loose-fitting clothing and underwear made of natural fibres like cotton. Avoid pantyhose and tight-fitting pants
• do not douche
• apply emollients to relieve dryness and itching. This will also help protect your skin from contact with urine and faeces.

For more information on vulval care go here.

Risks and complications

LS can cause the skin to crack and bleed which can be painful. Left untreated, scarring and lesions can cause your clitoris to be buried, your labia minora to shrink and the entrance to your vagina to narrow. This can cause sex to be very difficult and painful.

While it doesn’t cause cancer, women with untreated LS have a higher incidence of developing vulval cancer (around 5% of women with LS).

What you can do

If you have any of the symptoms mentioned, or you notice changes in your vulva, it’s important that you speak to your doctor. The earlier you have treatment, the better the outcome.

This web page is designed to be informative and educational. It is not intended to provide specific medical advice or replace advice from your health practitioner. The information above is based on current medical knowledge, evidence and practice as at April 2021.