Lichen sclerosus (in females)

The cause of LS is not fully understood. It can be linked to other conditions where the immune system attacks healthy cells in the body by mistake. These are called autoimmune conditions. Examples include vitiligo and overactive or underactive thyroid gland. However, it is not yet clear whether LS itself is an autoimmune condition. LS does not make your immune system weaker and does not affect any organs inside your body.  

LS is not due to an infection. It is not contagious and so it cannot be spread by touching, including sexual intercourse. It is not related to allergy or hormonal abnormalities. 

Friction or damage to the skin can make LS worse. Irritation from urine leakage or wearing incontinence pads or panty liners can make the symptoms worse. 

Is lichen sclerosus hereditary? 

It is not known if LS is hereditary, but it occasionally occurs in relatives. 

It is common for LS to feel itchy. Scratching may break the skin, which can be painful. Without treatment there can be a change in how the vulva (the skin around the vagina) looks with some loss of tissue. If the damage to the skin causes narrowing of the entrance of the vagina, sexual intercourse can be painful. The skin can also be more easily torn, particularly during sex. If there is severe scarring, this can interfere with passing urine  although this is very rare. It can also affect the skin around the anus. 

In children, constipation (unable to have a bowel movement) is a common symptom when the skin around the anus is affected.  

In some people, patches may appear on non-genital skin. This can be itchy but often does not cause other symptoms. 

The skin affected by LS can become paler, white and shiny. Typically, the affected skin is thinner than usual but can sometimes become raised and thickened.  

When the skin around the anus is also affected, it is described as ‘a figure of eight pattern’. Fragile skin and scratching may lead to some small blood vessels in the skin breaking, and this appears as tiny blood blisters. Sometimes, blisters and small cracks called fissures can be seen. If not treated, the vulva may look different from how it looked before. 

In non-genital skin, lichen sclerosus appears as small white, slightly raised areas, which can join up to form white patches.  After a while the surface of these areas can look like white wrinkled tissue paper. This is most common in areas where there is frequent pressure or rubbing (for example, the waist, shoulders and around the breasts). 

Images DermNetNZ.

The diagnosis can usually be made from how the condition looks. This is done by a healthcare professional who is experienced in diagnosing and managing the condition. All children should be seen by a specialist for diagnosis. If there is any doubt, a skin biopsy may be needed. Skin biopsy includes taking a small skin sample and examined under a microscope to confirm the diagnosis, especially if there is an open sore or a thickened area of skin. This is called a skin biopsy. Skin biopsy requires a local anaesthetic injection and possibly stitches to close the wound. This is usually not done in children. 

Can lichen sclerosus be cured?

There is no  cure for lichen sclerosus, but the symptoms and signs of the disease can be well controlled by using ointments on the affected skin. If LS starts in childhood, and is properly treated, it often settles by puberty in most girls. But, it may come back later in life.  

How can lichen sclerosus be treated? 

• Avoid washing with soap and instead use an emollient soap substitute/cream.  
• Avoid scented products such as bubble baths and shower gels. Products which avoid these are usually called ‘fragrance free’.  
• Avoid the use of wet wipes. 
• Avoid wearing panty liners if possible and if they are essential use fragrance free ones. 
• Carefully dry yourself after passing urine to reduce the contact of urine with your skin.  
• Use a bland emollient ointment or soft white paraffin (such as Vaseline®) as a barrier cream to protect your skin from exposure to urine.  
• If sexual intercourse is painful because of tightening of the skin at the entrance to the vagina, it may help to use lubricants and, if required, vaginal dilators. If this continues to be a problem, then you should be seen by a specialist as there are some surgical procedures that may be helpful. 
• Keep an eye on your skin. There is a small risk (less than 5%) of developing a skin cancer in the affected areas on the vulva. This can look like lumps, ulcers or crusted areas. This particularly tends to occur on some special types of LS where the skin is thickened. With good control of the symptoms and signs this risk is reduced further. Lifelong regular self-examination is important for all females who have had genital lichen sclerosus. If any skin changes develop which do not go away after using steroid ointment, in particular any skin thickening, soreness or ulceration lasting more than two weeks, you need to see your GP who may refer you to a specialist for further assessment.  
• If you are a smoker, stop smoking to reduce the risk. 

CAUTION:  

This leaflet mentions ‘emollients’ (moisturisers). Emollients, creams, lotions and ointments contain oils. When emollient products get in contact with dressings, clothing, bed linen or hair, there is a danger that they could catch fire more easily. There is still a risk if the emollient products have dried. People using skincare or haircare products should be very careful near naked flames or lit cigarettes. Wash clothing daily and bedlinen frequently, if they are in contact with emollients. This may not remove the risk completely, even at high temperatures. Caution is still needed. More information may be obtained here. 

More information about lichen sclerosus is available in the Lichen Sclerosus Guide.