What is vulval lichen sclerosus (LS)?

Lichen sclerosus (LS) is a skin condition. When it affects the skin of the vulva, it is known as vulval LS.

The vulva is the name given to all the visible sex organs that surround the opening of the vagina outside the body. People who have a vulva can include women, trans men and people assigned female at birth.

 

MACD026 Vulva with lymph nodes
Image: Vulva with lymph nodes

 

The vulva is made up of:

  • two thin, delicate folds of skin called the labia minora
  • two large, hair-covered folds called the labia majora – these surround the labia minora.

Between the labia are two openings:

  • the entrance of the vagina (birth canal)
  • the opening of the tube that drains urine from the bladder (the urethra).

Further back, under the legs, is the opening to the back passage (anus). The area of skin between the anus and vulva is called the perineum.

Vulval LS is more common:

  • before puberty
  • during the menopause (perimenopause)
  • after the menopause (postmenopause).

Is vulval LS cancer?

Vulval LS is not cancer. But it is thought that, over a long period of time, the inflammation caused by this skin condition increases the risk of cancer developing. A small number of people who have vulval LS may develop vulval cancer. This rarely happens when the condition is well controlled.

Other vulval skin conditions

There are other conditions that can affect the skin of the vulva. We have more information about:

Symptoms of vulval LS

The symptoms of vulval LS vary from person to person. Sometimes, it causes no symptoms and is discovered during tests for other health problems.

The affected area of the vulva may:

  • be very itchy and sore, which may be worse at night
  • change colour, becoming pale or white
  • develop small areas of bruising that look like blood blisters
  • be more fragile than normal skin and possibly split – in children this may cause constipation (problems emptying the bowels).

Over time, the skin of the vulva may scar and stick together. This can cause the opening of the vagina to narrow. For adults, this can make sex painful and difficult.

Many people find it embarrassing talking about symptoms like these. But it is always important to get them checked by your GP.

Causes and risk factors of vulval LS

The causes of vulval LS are not known. It is not possible to get LS through sexual contact. It is not a sexually transmitted disease and is not infectious. LS is also not caused by hormonal problems or an allergic reaction.

Sometimes LS runs in families. It is possible that it may be caused by an inherited altered gene.

Some people with vulval LS also have another illness, such as:

  • thyroid problems
  • pernicious anaemia
  • alopecia areata
  • diabetes.

Although these conditions can occur together, one disease does not cause the other.

Diagnosing vulval LS

If you have symptoms you usually start by seeing your GP. If needed, they will refer you to a doctor who specialises in vulval skin conditions (dermatologist or gynaecologist).

The main tests for vulval LS are an examination of the vulva and a simple procedure to collect a skin sample (biopsy) of any abnormal looking areas. Your doctor uses a local anaesthetic to numb the area before taking a sample. You can usually have this as an outpatient. It takes about 15 minutes.

It may take 3 to 4 weeks for the results of your biopsy to be ready. Waiting for your results can be difficult. It may help to talk to a relative or close friend.

Treating vulval LS

The aim of treatment for vulval LS is to control the condition and any symptoms you have. This reduces the risk of long-term problems like scarring or narrowing of the vaginal opening. It may also reduce the risk of vulval cancer developing.

Steroid ointment

Vulval LS is usually treated with a strong steroid ointment that you put on the affected area. Often a steroid called clobetasol proprionate (Dermovate®) is used. 

Your doctor or specialist nurse will tell you how to use it correctly. The information leaflet with the steroid may warn against using it on the genital area. However, this treatment is safe when prescribed by your specialist doctor.

You may need to keep using the ointment to control the LS. People sometimes worry about the side effects of using a steroid on the skin. When they are used correctly, steroid ointments rarely cause any serious side effects and can control vulval LS well. They can also prevent further damage to the vulval skin. Your doctor can answer any questions you have.

Surgery

Surgery is rarely used to treat LS. It may be used to improve problems, such as a narrowed vaginal opening or difficulty passing urine (pee). Your doctor can give you more information.

Skin care advice

Your doctor will also give you advice about things you can do to improve your symptoms, such as:

  • avoid using soap, perfumes, talc or wet wipes on the vulva
  • wash with an emollient soap substitute
  • wash your hair over the sink or bath to protect the vulval skin from shampoo
  • avoid hot baths wear loose fitting or no underwear
  • if you use a sanitary towel, use a non-perfumed type and change it regularly
  • use a plain emollient on the vulval skin, such as coconut oil
  • use a lubricant to protect the skin during penetrative sex.

Ask your doctor about products to avoid and which ones may be helpful. You may find you are sensitive to some creams or lubricants but that others work well for you. Some products may be available on prescription.

Follow-up for vulval LS

Vulval LS is a long-term condition that cannot be cured. It is usually possible to control the symptoms, and this prevents further damage to the skin.

You will normally have follow-up appointments until the LS is well controlled. Your specialist will give you more information.

A very small number of people with vulval LS develop vulval cancer. This is not common but talk to your specialist doctor as soon as possible if you notice:

  • a sudden change in your symptoms
  • any ulcers or lumps.

Do not wait until your next appointment.

Your feelings

It can be difficult to know who to talk to or how to start a conversation about living with a vulval condition. But for many people, talking about it is an important way of coping.

You may find it helpful to talk to family or friends. Or you may prefer help from someone you are not close to, such as a counsellor. There is no right or wrong way to cope, but help is available if you need it. You may find the following organisations helpful:

Macmillan is also here to support you. If you would like to talk, you can:

About our information

  • Reviewers

    This information has been written, revised and edited by Macmillan Cancer Support’s Cancer Information Development team. It has been reviewed by expert medical and health professionals and people living with cancer. It has been approved by Senior Medical Editor, Professor Nick Reed, Consultant Clinical Oncologist.

    Our cancer information has been awarded the PIF TICK. Created by the Patient Information Forum, this quality mark shows we meet PIF’s 10 criteria for trustworthy health information.

The language we use

We want everyone affected by cancer to feel our information is written for them.

We try to make sure our information is as clear as possible. We use plain English, avoid jargon, explain any medical words, use illustrations to explain text, and make sure important points are highlighted clearly.

We use gender-inclusive language and talk to our readers as ‘you’ so that everyone feels included. Where clinically necessary we use the terms ‘men’ and ‘women’ or ‘male’ and ‘female’. For example, we do so when talking about parts of the body or mentioning statistics or research about who is affected. Our aims are for our information to be as clear and relevant as possible for everyone.

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