Lichen sclerosus is a chronic skin condition in which the skin becomes less supple and whitish in color. In most cases, lichen sclerosus starts between the ages of 45 and 60. Lichen sclerosus occurs mainly in the pubic area. You can experience various physical and emotional complaints due to lichen sclerosus. Treatment for lichen sclerosus consists of hormone ointment or cream. Unfortunately, there is no definitive curative treatment for lichen sclerosus. In rare cases, skin cancer develops in the affected area. That is why you need follow-up medical care.

On this page you can read about:

• What is lichen sclerosus 
• Who is affected by lichen sclerosus
• What are the causes of lichen sclerosus
• What complaints do you experience 
• How is Lichen Sclerosus diagnosed 
• Treatment
• Follow-up medical care 
• What should you watch out for with lichen sclerosus

What is lichen sclerosus?

Lichen sclerosus (LS) is a chronic skin condition. The affected skin becomes less supple. As a result, the skin feels tight and becomes whitish in color. LS occurs mainly in women. The disease is usually in the labia. It is not a venereal disease. Also, it is not contagious and not hereditary.

The disease can occur in the following places

• Inner labia
• Outer labia
• Clitoris
• Entrance to the vagina (introitus)
• Around the anus (perianal)
• Torso (upper part and around the navel)
• Skull, palms and soles of the feet (this is rare)

There may be changes in the skin, such as

• Lightening or whitening of the skin
• Thinning of the skin
• Small cracks
• Small bruises or bleeding
• Scarring: the skin shrinks and the entrance to the vagina becomes tighter

LS is in most cases a symmetrical skin disease on the vulva and around the anus, so that an ‘8-figure’ of affected skin can be seen. In severe cases, scarring of the tissue may occur. The affected tissue shrinks. The entrance to the vagina can become narrow.

Who is affected by lichen sclerosus?

Lichen sclerosus occurs mainly in women. It usually starts between the ages of 45 and 60. Sometimes the disease also occurs in adult men and occasionally in children (more often in girls than in boys).

What are the causes of lichen sclerosus?

The pathogenesis of lichen sclerosus is not clear.

• Hormones can play a role. The condition occurs mainly in women and usually starts around menopause. This is a period in which the hormonal balance of women changes a lot.
• There is also evidence that lichen sclerosus is an autoimmune disease. This means that the body does not recognize certain cells as the body’s own and starts making antibodies against them. Cells that otherwise fight bacteria and viruses, for example, affect certain healthy areas of the skin. For the time being, it has not yet been conclusively established that LS is an autoimmune disease.

So far, there are no known infectious diseases that cause LS. It is not contagious. Irritation from heat, moisture or extended cycling is not the cause of LS but can aggravate the symptoms.

What complaints do you experience due to lichen sclerosus?

The complaints you may experience from lichen sclerosus differ per person. Some people have no complaints at all due to lichen sclerosus. If the condition is more serious, the symptoms are also usually worse, but not necessarily. Sometimes there are not many visible abnormalities, while you suffer from much itching.  Talk about it at Gynaecologie Amsterdam.

White spots

Lichen sclerosus is recognizable by white, sharply defined, sometimes shiny spots on the skin. The spots feel tight.

Pain/itching                                                                                                                                                                                                                                                                  Spots around the genitals can cause annoying complaints. Women particularly suffer from itching and pain in the area around the labia and anus. Often the itching is worst at night, so sleeping might be a problem.

Problems with urination or defecation

LS can also cause pain when urinating or defecating. Urination hurts especially when the skin is broken. If there are small cracks around the anus, then relieving is very painful as well.

Blood loss

Rubbing and scratching can cause painful wounds and cracks. In severe cases, blisters filled with blood develop. The wounds and blisters can spontaneously bleed. 

Sex and physical changes

Because the skin becomes less and less elastic, scar tissue develops. This can cause the labia to fuse with each other and / or with the clitoris. The labia often become smaller and can eventually disappear completely. Due to these changes, the entrance to the vagina becomes narrower. Sometimes the clitoris is also affected. This can lead to reduced sensation or pain during sex. Cracks can also occur quickly during sex causing pain. Apart from the usual treatment the use of a hypoallergic lubricant during sex is strongly recommended.

Emotional stress

Having lichen sclerosus may cause emotional stress. Women with LS complaints do not easily go to the doctor and if so, it might be misdiagnosed and treated as the much more common yeast infection. This can lead to postponement of proper diagnosis and treatment of LS.

Because LS mainly manifests itself around the genitals, sex may be painful for women with LS. This can put the relationship and sex life under pressure. Also discuss this with the gynecologist. If necessary, you can be referred to a sexologist.

How is LS diagnosed?

The general practitioner has referred you to Gynaecologie Amsterdam where there is extensive experience with women with lichen sclerosus.  You are probably worried by the diagnosis. At Gynaecologie Amsterdam, photos are taken, and we keep track of the development of the LS. In some cases or the suspicion of vulvar cancer, it may be necessary to have tissue examination by the pathologist. The gynecologist takes a small piece of the affected skin under local anesthesia. This is called a skin biopsy.

Treatment 

Hormone ointment for the genitals

Itching of the genitals is the most common complaint. Spontaneous pain and pain during sex are also common. The gynecologist will often start by prescribing a strong hormone cream or ointment. The hormones prescribed are corticosteroids. The pain and itching should quickly decrease. The ointment also helps to prevent scarring and deformities of the skin. If the symptoms are reduced, you can use the hormone ointment less often. Persistent use of corticosteroids prevents severe scarring and lowers the probability to develop vulvar cancer. 

Tissue that has disappeared cannot be recovered. The treatment mainly prevents further damage to the skin around the vagina and anus and suppresses symptoms such as itching. In the past, creams with estrogen (female hormone) or hormone tablets were also used. The effect of these has not been proven. The doctor therefore no longer prescribes this for LS.

Nourishing cream 

Hormone cream or ointment helps well against pain and itching of the genitals. It is also important that the affected skin is nourished daily by an oily ointment such as petroleum jelly or lanette ointment. 

Surgery

Surgery (such as plastic surgery with skin replacement) is usually not a solution. After an operation, the lichen sclerosus often comes back. In addition, interventions in this area are very sensitive and complications such as inflammation easily arise. If you experience a lot of complaints during sex, an intervention can be discussed, but that depends very much on your personal situation.

Follow-up medical care 

In rare cases, skin cancer develops in the affected area. That happens in 5 in 100 women with LS during their lifetime. That is why you need an annual check at Gynaecologie Amsterdam. It is also recommended that you check the affected skin for changes yourself on a regular basis. 

In case of persistent complaints not responding to the usual treatment or a wound in the affected area that does not heal spontaneously, make an appointment.

What should you watch out for with lichen sclerosus?

Be extra careful with the skin in case of lichen sclerosus. Wounds or other skin damage can cause or worsen your complaints. The skin is much more vulnerable than normal skin.

It helps to prevent additional irritation of the vulva. This can be done with the following measures:

• Wear loose cotton underwear during the day and no panties at night.
• Avoid nylon leggings or tights or other tight clothing.
• Use unscented, non-irritants to clean the skin.
• Do not use hot tubs or scented soap.
• Do not use fabric softener or plastic sheets.
• Use shampoo and soap only if you have to and only at the end of bathing.
• Do not continue to walk around unnecessarily long in wet bathing suit, gym or ballet clothes.
• Buy yourself a good bicycle saddle.

For some patients, it may be helpful to reach out to other women who have this condition. There is a patient association (www.lichensclerosus.nl) .