Vulval lichen sclerosis and lichen planus (VAIN)
Lichen sclerosus and lichen planus are skin conditions. They can affect different parts of the body, but commonly affect the vulva.
After many years, these conditions may occasionally develop into vulval cancer. Only around 3-5 out of every 100 women with lichen sclerosus or lichen planus will develop cancer.
The vulva is a woman's external genital area. It includes two hair-covered folds of skin called the labia majora. These surround two thin and delicate folds called the labia minora.
The labia majora and labia minora surround the opening of the vagina and the tube through which urine is passed (the urethra).
The clitoris is above the vagina and urethra. This small structure is very sensitive and helps a woman reach sexual climax (orgasm). The opening to the back passage (anus) is separated from the vulva by an area of skin called the perineum.
Vulval lichen sclerosus (LS) and lichen planus (LP)
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LS and LP are fairly common, non cancerous skin conditions. They can affect any part of the body. When they affect the skin of the vulva, they’re known as vulval LS or LP.
LS and LP can affect children and adults. These conditions can be controlled by treatment but can't be cured.
LS and LP are not cancer. But in a few people, over many years, they may develop into a type of skin cancer known as squamous cell cancer.
The causes of LS and LP are unknown. Some women with these conditions have other family members with LS or LP, so it's thought they may sometimes be caused by an inherited altered gene. LS and LP are more common in older women and women who have autoimmune illnesses, such as thyroid problems or pernicious anaemia.
It's not possible to get LS or LP through sexual intercourse. They aren't sexually transmitted diseases and they're not infectious.
The skin in the affected area becomes very itchy and sore, with a change in colour. The skin becomes more fragile than normal skin and may split, causing stinging and pain. Occasionally, this leads to difficulties with passing urine or having sex. The vagina may become narrowed, and sex may become uncomfortable.
The symptoms vary from woman to woman, and some women with LS or LP have no symptoms at all. In this case, the condition may be discovered during medical examinations for other health problems.
These symptoms can be caused by conditions other than LS or LP. If you have any of them, let your GP know. They can examine you and refer you to a doctor who specialises in women's health (a gynaecologist).
How LS and LP are diagnosed
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The symptoms of LS and LP can vary and are similar to other conditions of the vulva. For these reasons, you may need to have a small sample of cells taken from the affected area to be examined under a microscope (a biopsy). This is done in the outpatients department. An anaesthetic cream is usually used to numb the area first. This takes around 20 minutes to work. Local anaesthetic is then injected into the area using a small needle. Sometimes, a general anaesthetic is used. A sample of cells about 3mm wide (an eighth of an inch) is taken from the vulva.
Often, no treatment is needed. If you have severe LS or LP, you will need to see your doctor regularly. If symptoms such as itching or soreness become troublesome, it can help to use a non-perfumed moisturiser instead of soap on the vulval area.
Your doctor may prescribe a type of steroid cream called clobetasol proprionate (Dermovate ®). Your doctor will advise you how to use it. You may need to apply it regularly for a few weeks before the dose is gradually reduced. This treatment is safe and can often control the symptoms very well. But it will not get rid of the condition completely. This treatment may also make sex easier as it can help the skin become more supple.
Surgery is rarely used to treat LS or LP. Sometimes, it’s used to relieve problems caused by scarring, such as a narrowed vaginal opening. This can help if sex has become difficult or painful.
Follow-up for LS and LP
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As LS and LP are long-term conditions that can't be completely cured, you may continue to have symptoms. Your specialist will let you know if any follow-up is needed after treatment. This may be at the hospital or at your GP surgery.
Women who’ve had LS or LP for many years have a small risk of developing a vulval cancer. This usually occurs in women in their 60s–90s, rather than in younger women. It's important to see your doctor or nurse regularly to check for any signs of a cancer developing. This is so that if cancer does develop, treatment can be given at an early stage, when there's a high chance of it being cured.
Tell your doctor if you develop any symptoms you are concerned about, such as a lump or swelling, or any itching, bleeding or burning pain.
Many women feel frightened when they are first told they have LS or LP, and worry that they may develop cancer. You may find the treatments embarrassing and frightening. You may feel tense, tearful or withdrawn. Some women find these feelings difficult to cope with.
Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to family or friends. Others prefer to seek help from people outside of their situation. Some people prefer to keep their feelings to themselves. There is no right or wrong way to cope, but help is available if you need it. You can talk to our specialists or join our Online Commuunity to meet people who are going through a similar situation.
Association for Lichen Sclerosus and Vulval Health
The Association for Lichen Sclerosus and Vulval Health provides emotional support and general information on a one-to-one basis. Visit the 'Contact us' page of their website.
Vulval Pain Society
The Vulval Pain Society is a voluntary organisation run by a doctor and nurse. It gives information and support to women with any vulval condition.
This information has been compiled using a number of reliable sources, including:
British Association for Sexual Health and HIV (BASHH). 2014 UK National Guideline on the Management of Vulval Conditions. Feb 2014. (Accessed March 2014).
Tobias J and Hochhauser D. Cancer and its management. 6th edition. 2010. Wiley-Blackwell.
Gunther Stewart E. Vulvar Lichen Planus.www.uptodate.com Feb 2014. (Accessed March 2014).
With thanks to Dr Amanda Tristram, Senior Lecturer in Gynaecological Oncology, who reviewed this edition.
Thank you to all of the people affected by cancer who reviewed what you're reading and have helped our information to grow.
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