Vulval lichen sclerosus and lichen planus (VAIN)
This information is about two particular skin conditions: lichen sclerosus and lichen planus. These can affect different parts of the body, but more 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, which 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 positioned 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 that can occur in the skin on any part of the body. They can affect children as well as adults. In vulval LS and LP, changes occur in the skin of the vulva. They are a slow-developing inflammation of the skin in the vulval area which can be controlled by treatment but can't be cured.
These changes are not cancer, but in a few people they may, over many years, develop into a type of skin cancer known as squamous cell cancer.
The causes are unknown, but some women with these conditions have other family members with LS or LP, so it's thought that these conditions may sometimes be caused by an inherited faulty gene. They are more common in older women and in 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.
Signs and symptoms of LS and LP
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The skin in the affected areas become very itchy and sore, with an abnormal appearance and a change in colour. The skin becomes more fragile than normal skin and may split, causing stinging and pain. The vulva may become distorted, causing a change in its shape or size. 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 these conditions have no symptoms at all. In this case, the conditions may be discovered during medical examinations for other health problems.
The above symptoms can be caused by conditions other than LP or LS. If you have any of these symptoms, let your GP know. They can then 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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As the signs and symptoms of LS and LP can vary and are similar to other conditions of the vulva, it may be necessary to take a small sample of cells from the affected area to examine under a microscope (a biopsy).
This is done in the outpatient department. An anaesthetic cream is usually used to numb the vulval area before the biopsy is taken. This takes around 20 minutes to work. Local anaesthetic is then injected into the area using a small needle. Sometimes a general anaesthetic may be given. A sample of cells about 3mm (an eighth of an inch) wide is then taken from the vulva, using a biopsy tool.
Often no treatment will be needed, but if you have severe LS or LP you will need to see your doctor regularly. If the symptoms, such as itching or soreness, become troublesome it can help to use a non-perfumed moisturiser instead of soap in the vulval area.
A type of steroid cream (clobetasol proprionate, called Dermovate®) can be prescribed by your doctor, often for use twice a day for three months. After this, your doctor may recommend you use the cream twice a week. This treatment is safe, can often control the symptoms very well and can help women go back to a normal life. However, it will not get rid of the condition completely. The treatment can make the skin more supple and so can help make sex easier.
Surgery is rarely used to treat LS or LP. Sometimes it may be used to relieve the problems that scarring can cause, such as a narrowed vaginal opening, which can make sex difficult and painful.
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. Sometimes this will be at the hospital and sometimes at your GP surgery.
Women who have had either 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 treatment can be given at an early stage, when there's a high chance of a cure.
Tell your doctor if you develop any symptoms you are concerned about, such as a lump or swelling, 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, and may feel tense, tearful, or withdrawn. At times, these feelings can be overwhelming and hard to control.
Everyone has their own way of coping with difficult situations. Some people find it helpful to talk to friends or family, while others prefer to seek help from people outside of their situation. Others may prefer to keep their feelings to themselves. There is no right or wrong way to cope, but help is available if you need it.
National Lichen Sclerosus Support Group
The National Lichen Sclerosus Support Group provides emotional support and general information on a one-to-one basis (initially by letter: please send SAE). Some telephone support can then be arranged.
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 information from a number of reliable sources, including:
Tobias J and Hochhauser D. Cancer and its management. 6th edition. 2010. Wiley-Blackwell.
E. Gunther-Stewart Vulvar Lichen Planus. UpToDate website http://www.uptodate.com. (accessed October 2012).
With thanks to Professor David Luesley, Professor of Gynaecological Oncology, and the people affected by cancer who reviewed this edition. Reviewing information is just one of the ways you could help when you join our Cancer Voices network.