Can you stop the progression of lichen sclerosus?

Lichen sclerosus (said ‘like-en skler-oh-sus’) is a skin condition that makes patches of skin look white, thickened and crinkly. It most often affects the skin around the vulva or anus.

It can be itchy, painful and cause permanent scarring. Four in 100 (or four per cent of)  women with this condition go on to develop vulvar cancer.

Lichen sclerosus affects around one in 80 women. It can happen at any age, but is most common in middle-aged and elderly women. For most women it is a lifelong condition.

What are the signs of lichen sclerosus?

Symptoms include:

• chronic itchiness in the vulvar or anal area (which may go away and come back later)
• skin that looks pale, thicker or crinkled
• pain if the skin has split because of scratching.

Skin affected by lichen sclerosus can also scar and join up with nearby skin. This can change the structure of your vulva – for example, your labia minora may appear flattened, your clitoris can become buried under its hood and/or the opening of your vagina may shrink. This can sometimes affect your ability to have and/or enjoy sex.

What causes lichen sclerosus?

Unfortunately, we don’t yet know.

Some researchers think that lichen sclerosus may be an auto-immune disorder, where your immune system becomes confused and attacks your skin instead of protecting it. Lichen sclerosus appears to be more common in women with other auto-immune illnesses such as thyroid problems or ulcerative colitis.

How is lichen sclerosus diagnosed?

Your doctor can diagnose lichen sclerosus by looking at your vulva. Sometimes they might take a small sample of your vulvar skin (called a biopsy) and send it away to a laboratory for testing.

Unfortunately, lichen sclerosus is sometimes mistaken for thrush, which also causes vulvar itchiness. 

If your symptoms persist, you should see a skin specialist (a dermatologist) or women’s health specialist (a gynaecologist).

How is lichen sclerosus treated?

Unfortunately there is no cure or way to get rid of lichen sclerosus completely. There are however ways to reduce or lessen the symptoms so that you can live comfortably with it.

• Cortisone ointment applied to the vulva can provide relief and stop lichen sclerosus from getting worse. This is a lifelong treatment and you will need to apply cortisone regularly (often once or twice a week) even when you have no symptoms. Strong cortisone is safe to use on inflamed skin and will not cause the skin of your vulva to thin.
• Surgery to remove any cancerous or pre-cancerous skin. Surgery can also remove scarring or adhesions that cover the entrance to your vagina if these are affecting your ability to have or enjoy penetrative sex.

You will also need regular checkups with your doctor to monitor your lichen sclerosus. Let them know if you notice any new changes to your vulva.

Can I have sex if I have lichen sclerosus?

It is safe to have sex. You can’t give someone lichen sclerosus because it’s not a sexually transmitted infection or contagious.

You might find sex painful however, because scarring can make the vulvar skin (and vaginal opening) tight and more likely to split.

Talk to your doctor or a sexual counsellor if sex is painful or you are anxious about trying it again. Dilators that help to open the vagina and exercises that relax the surrounding muscles may help.

Things to remember

• Lichen sclerosus is often mistaken for thrush so see your doctor if you are often itchy in the vulvar or anal area.
• There are treatments that can help you successfully manage the symptoms.
• Lichen sclerosus is not contagious.

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In women and girls, LS tends to affect the vulva (the skin around the entrance to the vagina) and the skin around the anus (back passage). Friction or damage to the skin can trigger the problem and make it worse. This is called a 'Koebner response'. Irritation from urine leakage or from wearing incontinence pads or pantyliners can also aggravate the LS. Symptoms can include:

• Small white areas that may increase in size and join together to form larger patches – these patches may become cracked and sore
• Itchiness, which tends to be worse at night and may disturb sleep
• Skin becoming fragile and thin, or wrinkly and thickened, with red or purple blood blisters
• Pain during intercourse and when opening the bowels

Without treatment, the vulva may gradually scar and shrink. This can make the entrance to the vagina narrower, with sex becoming increasingly difficult and painful. In most cases, although any patches on the general skin surface will not feel persistently itchy, those in the genital area usually do, and can also become sore if the skin breaks down or cracks. The scar-like process can tighten the skin, leading to problems with urination and sexual intercourse. Tightening of the skin around the anus can also lead to constipation issues.

Symptoms in men and boys

In men and boys, LS tends to develop on the foreskin and the end of the penis, although the skin around the anus is rarely affected. Symptoms can include:

• Sore or sometimes itchy white patches on the penis, particularly around the tip, but sometimes on the shaft
• The skin at the tip of the penis becoming firm and white
• Difficulty pulling the foreskin back, which can make urination difficult and lead to painful erections if left untreated

For both men and women, it is often easy for a doctor to diagnose LS by asking about your symptoms and examining your skin. However, in some cases, a very simple procedure known as a biopsy, where a skin sample is taken for analysis, may be needed to make a firm diagnosis.

How long does LS last?

For most people, LS is a long-term condition that lasts for many years and may flare up and down over time. There is presently no cure, but symptoms can normally be controlled with steroid medication applied directly to the affected skin. Occasionally, LS goes away on its own and does not come back, but this usually only occurs when children with the condition reach puberty.

Steriod treatment

The main treatment for LS is steroid ointment or cream, which helps to control symptoms. It should be applied regularly, but relatively sparingly, to the affected areas of skin. Your doctor will advise you on how much to use, how frequently, and for how long. Generally, a 30g tube should last for around three months. When used appropriately, the risk of side effects such as thinning of the skin is very low. Symptoms tend to ease after a few weeks of treatment, but it may be a few months before your symptoms are fully under control. Steroid creams and ointments are very effective in most cases, however, if these do not relieve symptoms, other treatments may be suggested by a specialist.

Surgery

In a few cases, surgery may be needed to treat problems caused by LS. For example, a small operation may be carried out to divide adhesions if the skin sticks together. If the condition causes a woman's vaginal opening to become very narrow and affecting sex, surgery to widen it may be suggested. Men or boys may need a small operation to remove the foreskin if steroid ointments or creams do not help and the foreskin becomes severely affected. This can result in the condition settling fully.

For women who find sex painful, it may help to use a lubricant or a vaginal dilator. There is a very small increased chance of developing cancer of the vulva or penis if you have lichen sclerosus. If any skin change develops which does not respond to steroid creams, in particular any skin thickening, soreness or ulceration lasting for more than two weeks, you need to tell your doctor without delay. You may need a biopsy to test for skin cancer.

With thanks to the British Association of Dermatologists (BAD), the Association of Lichen Sclerosus and Vulval Health and NHS Choices for assisting with the content and imagery supplied for the article.

ABOUT CAUSES DIAGNOSIS TREATMENT NEXT STEPS

Lichen sclerosus is a long-term (chronic) skin condition. It causes the skin to become thin, white, and wrinkly. Lichen sclerosus may occur in men, women, and children at any age. But it is most common in women older than age 50.

Skin has several layers. The outer layer is the epidermis. Under this is the dermis. The dermis contains blood vessels, nerve endings, hair roots, and sweat glands. With lichen sclerosus, the epidermis may become thin. Inflammatory cells invade the dermis. This may cause swelling and broken blood vessels. Stretchy fibers in the skin (elastic and collagen) may break. All of this can lead to symptoms such as itching, pain, and blisters.

This condition often affects the genital and anal areas. Vulvar lichen sclerosus is a common form of the condition that affects a woman’s external genital areas. Less often, lichen sclerosus can affect other parts of the body. These may include the neck, shoulder, breast, thighs, or mouth.

Experts are still working to understand what causes lichen sclerosus. It runs in families, so experts think that certain genes may play a role. It does not seem to be contagious. So you can’t catch it from another person. Some factors that may lead to the condition are:

• Problems with your immune system
• Hormonal imbalances, especially with estrogen
• Past skin damage

You may have a greater risk for lichen sclerosus if you have an autoimmune disease such as:

• Autoimmune-related thyroid disease
• Autoimmune-related anemia
• Vitiligo
• Type 1 diabetes
• Alopecia areata

Other factors that can increase your risk include:

• A history of sexual abuse
• A history of the condition in your family

Circumcision greatly lowers the risk of lichen sclerosus in men.

Lichen sclerosus causes skin changes. Very early on, you might not have any symptoms at all. A little later, you may see small white spots on your skin.

Common symptoms might include:

• Vulvar itching (very common)
• Anal itching, bleeding, or pain
• Pain during sex
• Skin bruising and tearing
• Blisters
• Easy bleeding from minor rubbing of the skin
• Pain or bleeding when having a bowel movement
• Trouble urinating or pain with urination
• Painful erections (in men)

Lichen sclerosus doesn’t affect the inner reproductive organs, such as the vagina or uterus.

Your healthcare provider will ask about your health history and symptoms. You will also have a physical exam. This will include a close physical exam of the affected areas.

Often, this is enough for a diagnosis. In some cases, you may have a skin biopsy. For a biopsy, small skin samples are removed and looked at in a lab.

In some cases you may need other tests. This is to make sure you don’t have other health conditions. These may include lichen planus, low estrogen levels, or vitiligo. Your provider may also want tests to check you for certain conditions, such as autoimmune thyroid problems. The area of skin may also be checked to make sure it isn’t infected.

You may be treated by a primary healthcare provider, a skin healthcare provider, or a healthcare provider specializing in the reproductive organs.

Often, patches outside the genital and anal area may go away with time. Your healthcare provider may choose to watch these areas before starting treatment. Symptoms in the genital and anal area don’t often get better without treatment.          

Treatment is done to ease symptoms and keep the lichen sclerosus from getting worse. The treatment often starts with steroid ointment. This reduces pain, itching, and inflammation. When used regularly, this helps manage symptoms for most people. Other possible treatments include:

• Steroid injections. These are more likely to be used if steroid ointment doesn’t work well.
• Tricyclic antidepressants at low doses. This may decrease vulvar pain.
• Other medicines. These may be used if other treatments have failed. These medicines may include acitretin (except in women of childbearing age due to risk of severe birth defects) or tacrolimus.
• Ultraviolet light treatment. This is done if other treatments fail.

For men, removing the foreskin (circumcision) is often a successful treatment. In women, surgery is often not a preferred treatment. That's because lichen sclerosus often comes back.

These treatments often reduce most of the symptoms and keep the condition from getting worse. You will likely need to use medicine on a regular, long-term basis. If untreated, the condition tends to get worse over time.

Vulvar lichen sclerosus may slightly increase the risk of squamous cell skin cancer in women. Men with lichen sclerosus on the penis may also have an increased risk. (Lichen sclerosus on other parts of your body does not seem to increase your cancer risk.) Your healthcare provider may need to check your skin on a regular basis. You may need a biopsy of any abnormal areas to check for skin cancer. You should also check yourself regularly for lumps or sores that don’t heal.

Untreated advanced lichen sclerosus may permanently change the look of your genitals. The vagina's opening may narrow. The outer and inner lips of the vulva may stick together. You may need surgery to fix these changes. In men, the foreskin may scar and shrink. This leads to trouble pulling back the foreskin. In both men and women, the condition may cause pain during sex.

Treatments for lichen sclerosus can also cause complications. For example, using steroid ointment for a long time may cause genital yeast infections.

Practicing good hygiene may help you reduce some of the symptoms of lichen sclerosus. Your healthcare provider may advise that you:

• Not scratch the area
• Not wear pantyhose (wear thigh-high stockings instead)
• Wear cotton underwear instead of synthetic underwear
• Wear loose-fitting pants or skirts instead of tight-fitting pants
• Not use scented soaps, detergents, or bubble baths
• Not apply soap directly to your genitals
• Use your fingertips and not washcloths for washing the vulva
• Pat the vulva dry after washing, and don’t rub
• Not use feminine sprays or douches

You can find support from the Association for Lichen Sclerosus and Vulval Health.

Key points about lichen sclerosus

• Lichen sclerosus is a long-term skin condition that mostly affects the genital and anal areas. It causes your affected skin to become thin, white, and wrinkly.
• It is due to inflammation and other skin changes in the affected area.
• Common symptoms include itching, irritation, and pain during sex.
• Most people with will need long-term treatment to manage their symptoms.
• It increases your risk of squamous cell skin cancer. You and your healthcare provider should check for signs of this.
• Good hygiene may also help reduce some symptoms.

Tips to help you get the most from a visit to your healthcare provider:

• Know the reason for your visit and what you want to happen.
• Before your visit, write down questions you want answered.
• Bring someone with you to help you ask questions and remember what your provider tells you.
• At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
• Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
• Ask if your condition can be treated in other ways.
• Know why a test or procedure is recommended and what the results could mean.
• Know what to expect if you do not take the medicine or have the test or procedure.
• If you have a follow-up appointment, write down the date, time, and purpose for that visit.
• Know how you can contact your provider if you have questions.

Medical Reviewer: Michael Lehrer MD

Medical Reviewer: Rita Sather RN

Medical Reviewer: Raymond Kent Turley BSN MSN RN

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