Lichen Sclerosus

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WHAT IS IT? 

A long-lasting (probably lifelong) skin inflammation that involves the genital area in particular, including around the anus and sometimes towards the groins. It is an external condition, not affecting the vagina. Symptoms of itch, burning and soreness are common, but sometimes there are NO symptoms. It is diagnosed on the visual changes of the skin. Usually a biopsy is performed to confirm the diagnosis. It does not interfere with pregnancy and may even be improved by it.

It may occur at any age, but females are more often affected than males. It is not an infection, but damaged skin can be easily infected. You can not “catch” from or “give” this condition to anyone. Most likely it has genetic and immune basis, and occasionally it occurs in families. Sometimes it is associated with other diseases related to the immune system e.g. diabetes, thyroid conditions, pernicious anaemia or coeliac disease..

In recent years it has become understood that the best treatment is using enough steroid ointment or cream to prevent all symptoms. If there is itch or tenderness, the condition is active and may cause complications. Where there have never been symptoms, treatment is still necessary. With or without symptoms, a level of ongoing treatment is usually continued LIFELONG and an annual checkup is needed. We encourage women to learn to self check their vulva. 

In Lichen sclerosus, topical steroid use does not thin the skin if used correctly. The minimum recommended frequency of maintenance treatment is once per week. Ointments are preferred to creams in most cases.

SYMPTOMS

Lichen sclerosis symptoms can range from very mild to quite severe. There is skin dryness through loss of oil producing skin glands and surface thickening.

As a result this may cause:

  • itch
  • skin splitting
  • skin thickening and whitening
  • other infections if damaged skin e.g. thrush,  bacterial skin infections

Occasionally there may also be blood blisters. If untreated there can be some skin destruction but only externally. The vagina stays normal. 

The skin changes may include the following:

  • covering over of the clitoris by skin
  • loss of the inner lips (labia minora)
  • bands of joined skin above and below the vaginal opening, often making the vaginal entrance small, with intercourse painful (these bands can be removed surgically)

In men, lichen sclerosus usually affects the tip of the penis and prepuce (this is also called balanitis xerotica obliterans). Occasionally the urethra may narrow resulting in difficulty passing urine.

TREATMENT  

Very strong topical steroid medication can stabilise these changes,and help smooth out the roughened skin, and prevent the narrowing of the vaginal opening. However it cannot restore the inner lips or reverse the covering over of the clitoris Serious side effects of treatment are rare and it is more dangerous not to treat this condition. It is important to attend regular check ups.

The regular use of moisturisers or barrier ointments (like dermeze, zinc cream or paste, sorbolene cream) in addition to the steroid medication can, help to stabilise the condition, once it is under control.

DIAGNOSIS

This condition may be diagnosed clinically (by being examined by a doctor) or may require a skin biopsy. 

RISK OF CANCER

This may be in about 2-6 % of cases. This may be more the result of long-term scratching than the disease itself (this is uncertain).

However, lifelong yearly assessment should be a minimum in all cases. Any new, thickened area or ulcer that does not soften and decrease with daily steroid ointment used for 3-4 weeks should be biopsied.

ROLE OF SURGERY

Where the adhesion of the labia has produced tight bands that are strained and split with penetrative sexual activity, surgery is often helpful to release this tightness.
In men, occasionally the urethral opening may need dilating (meatal dilatation). If the foreskin becomes scarred and is difficult to retract, circumcison may be needed.
Surgery is not a substitute for ongoing steroid medication.

The following web links may provide more information.

DISCLAIMER:
This fact sheet is designed to provide you with information on Lichen Sclerosus. It is not intended to replace the need for a consultation with your doctor. All clients are strongly advised to check with their doctor about any specific questions or concerns they may have. Every effort has been taken to ensure that the information in this pamphlet is correct at the time of printing.
Last Updated August 2012