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Lichen Sclerosus

Lichen sclerosus is a skin condition in which the skin becomes less supple and whitish in colour. In most cases it occurs in women between the ages of 45 and 60, but it can also occur in adult men and children. Lichen sclerosus mainly occurs in the pubic area, but can also occur in the mouth, on the trunk and in rare cases on the skull, hands and feet. You can experience various physical and emotional complaints due to lichen sclerosus. The treatment for lichen sclerosus consists of hormone ointment or cream. Unfortunately, there is no definitive cure for lichen sclerosus.

On this page you can read about it:

What is lichen sclerosus?
Who does lichen sclerosus occur in?
What are the causes of lichen sclerosus?
What complaints do you experience from lichen sclerosus?
How is it diagnosed?
What treatment is possible?
What checks are needed?
What do you need to be careful of with lichen sclerosus?

What is lichen sclerosus?

Lichen sclerosus (LS) is a skin condition. The diseased skin slowly becomes less supple. As a result, the skin feels tight and becomes whitish in colour. LS occurs mainly in women. The disease is usually in the labia. It is not a venereal disease. It is also non-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)
Hull (upper part and around the navel)
skull, palms and soles of feet (this is rare)

Changes can be seen 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.

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LS usually look about the same on the left and right side, so that often an '8 figure' of affected skin can be seen. It is often around the vagina entrance and the anus. In severe cases, scarring of the tissue may occur. The tissue shrinks. The entrance to the vagina can become narrower this way.
Who does lichen sclerosus occur in?

Lichen sclerosus mainly occurs in women. It usually begins between the 45th and 60th year of life. Sometimes the disease also occurs in adult men and occasionally in children (more often in girls than boys).
What are the causes of lichen sclerosus?

Exactly how lichen sclerosus originates is not clear.

Hormones can play a role. The disorder mainly occurs in women and usually starts around menopause. This is a period in which the hormone balance of women changes a lot.
There are also indications that lichen sclerosus is an autoimmune disease. This means that the body does not recognise certain substances or cells as the body's own and starts making antibodies against them. Cells that otherwise fight bacteria and viruses, for example, affect certain healthy parts of the skin and mucous membranes. As yet, it has not been established that LS is an autoimmune disease.

So far, there are no known infectious diseases that cause MS. It is not contagious. Irritation caused by heat, moisture or a lot of cycling is not the cause of LS. Irritation can, however, exacerbate the symptoms.
What complaints do you experience due to lichen sclerosus?

The complaints you can experience due to lichen sclerosus vary from person to person. Some people have no complaints at all due to lichen sclerosus. If the condition is more serious, the symptoms are usually worse. But this is not necessary. Sometimes you don't see so many abnormalities, while you do have a lot of trouble.
White spots

Lichen sclerosus can be recognized by white, sharply delimited, sometimes shiny patches on the skin. The spots feel tight.
Pain/Itch

Places around the genitals can cause annoying complaints. Women suffer in particular from itching and pain in the area around the labia and anus. Often the itching is worst at night, which disturbs sleep.
Problems with urinating or defecating

LS can also cause pain when urinating or defecating. Peeing hurts when the skin is broken and urine runs over it. If there are small cracks around the anus, then pooping is very painful.
Blood loss

Rubbing and scratching can cause painful wounds and cracks. In severe cases, blisters filled with blood develop. The wounds and blisters can bleed spontaneously. Sometimes this is called vaginal bleeding, but this is not correct. By vaginal bleeding is meant blood loss from the vagina or uterus.
Ageing

As the skin becomes less and less elastic, a kind of scar tissue is formed. This can cause the labia to fuse with each other and/or with the clitoris. The labia often become smaller and may eventually disappear altogether. As a result of these changes, the entrance to the vagina becomes narrower. Sometimes the clitoris is also affected. This can lead to reduced feeling or pain during sex. Tears can also quickly develop, which in turn can cause pain.
Symptoms in children

In young girls, lichen sclerosus often causes fewer complaints. The spots sometimes itch or give a burning sensation. Other complaints are vaginal discharge, pain in stools and pain when urinating. This disappears again when the condition heals. The vaginal wounds are sometimes wrongly associated with sexual abuse. It is therefore good to be cautious with this conclusion and first rule out whether the complaints may also have been caused by a disorder such as lichen sclerosus.

For more information see Lichen sclerosus in girls.
Emotional strain

Having lichen sclerosus is often a major emotional burden. Due to shame, women with complaints do not quickly go to the doctor. Itching can also indicate a vaginal fungal infection. This is much more common, so women with lichen sclerosus often wrongly get treatment for it first. This can lead to postponement of the correct diagnosis and treatment.

Because the disease mainly manifests itself around the genitals, sex is painful for many women with lichen sclerosus. This can put pressure on your relationship and sex life. Discuss this with your doctor if necessary. If necessary, you can refer them to a sex therapist.
How is the diagnosis made?

Your GP will refer you to a gynaecologist. The gynaecologist can easily recognise most forms of lichen sclerosus. Tissue tests are usually required to be sure of the diagnosis. The doctor removes a small piece of skin under local anaesthetic. This is called a skin biopsy.
What treatment is possible?
Hormone ointment for the genitals

Itching of the genitals is the most common complaint. Spontaneous pain and pain during lovemaking are also common. The gynaecologist will often start by prescribing a strong hormone cream or ointment. The hormones it contains are adrenal cortex hormones and are called corticosteroids. This quickly reduces pain and itching. The ointment also helps to prevent scars and deformities of the skin.

When the complaints have diminished, you can start using a less strong hormone ointment and/or lubricate less often. When the disease develops in adulthood, it does not heal spontaneously. You will therefore have to continue using the ointments for the rest of your life. Sometimes there will be periods when you have fewer symptoms or no symptoms at all. Then you will also have to lubricate less or not at all. It is best to smear as little as possible, just enough to suppress the complaints. Prolonged use of hormone creams makes the skin thinner and more vulnerable, so too much lubrication is not good either.

Tissue that has disappeared cannot come back as a result of the treatment. The treatment mainly prevents further damage to the skin around the vagina and anus and suppresses symptoms such as itching. In the past, creams containing oestrogen (female hormone) or hormone tablets were also used. The effect of these has just not been proven. The doctor therefore no longer prescribes this in LS.
Caring cream for the rest of the body

Hormone cream or ointment helps well against pain and itching of the genitals. It is also important that the skin is nourished by a nourishing, oily ointment such as vaseline or lanette ointment. However, skin abnormalities in other parts of the body do not respond well to hormone ointment or cream. If the skin feels tight it is best to use an ordinary caring cream. This usually provides relief.
Surgery?

An operation (such as plastic surgery with skin replacement) is usually not a solution. After surgery, the condition often recurs. In addition, surgery in this area is very sensitive and complications such as inflammation can easily occur. If you experience many complaints during sex, an operation can be discussed. This depends very much on your personal situation.
With girls

In young girls, the most common problems are itching and pain in the outer labia and the area around the anus. The doctor can prescribe a hormone cream or ointment for this. In young girls the complaints often disappear when they reach puberty. Approximately 65% have no complaints after that.

For more information see Lichen sclerosus in girls.
What checks are needed?

In rare cases, skin cancer occurs in the affected area. It occurs in about 5 out of every 100 women with LS. For this reason, it is advisable to return to the gynaecologist or dermatologist every year for a check-up. It is also advisable to check the affected skin regularly for changes. If you have a wound that does not heal spontaneously or continues to ulcer, go back to your doctor (sooner).
What should you be careful of if you have lichen sclerosus?

Be extra careful with your skin if you have lichen sclerosus. Wounds or other damage can cause new symptoms. The skin is much thinner and more vulnerable than healthy skin.

It helps to prevent extra irritation of the vulva. This can be done with the following advice

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 bubble baths or perfumed soap.
Do not use fabric softener or plastic sheets.
Use shampoo and soap only when necessary and only at the end of bathing.
Do not stay unnecessarily long in wet swimming costumes, gym or ballet clothes.

Tepso® underwear can help alleviate complaints. Click here for more information.

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