WHAT IS IT?
An uncommon, chronic, inflammatory skin condition that affects the genital area, resulting in white patches and scarring. It can sometimes extend to involve the anus and groins. It does not affect the vagina. Symptoms of itch, burning and soreness are common, but often there are NO symptoms.
It can occur at any age, and females are more often affected than males. You cannot “catch” from or “give” this condition to anyone. Most likely it has a 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
Lichen sclerosus symptoms can range from very mild to quite severe. There may be skin dryness through loss of oil producing skin glands. The skin surface can be thickened and white in active disease, or pale, thinned and fragile in long standing disease If itchy, scratching can result in very thickened white skin, blood blisters and excoriations. Skin fragility can result in splitting. Damaged skin is susceptible to secondary infection by yeasts or bacteria which may result in skin soreness.
Chronic inflammation can result in scarring and loss of normal skin architecture.
The changes may include:
- covering over of the clitoris by skin
- loss of the inner lips (labia minora)
- bands of joined skin above and below the vaginal opening, that can make the vaginal entrance small,and result in painful intercourse.
In men, lichen sclerosus usually affects the tip of the penis and foreskin (this is also called balanitis xerotica obliterans). Occasionally the urethral opening may narrow resulting in difficulty passing urine.
In recent years it has become understood that the best treatment is using enough steroid ointment or cream to prevent all symptoms (such as itch or soreness) and suppress active disease. Where there have never been symptoms, treatment is still necessary.
Strong topical steroid medication is prescribed to control inflammation, help smooth out the roughened skin, and prevent or halt scarring. However it cannot reverse loss of skin architecture. Serious side effects of treatment are rare and it is more dangerous not to treat this condition. Topical steroid use does not thin the skin if used correctly. Once active lichen sclerosus is stabilised, most people are prescribed maintenance therapy to reduce or prevent recurrence. The minimum recommended frequency of maintenance treatment is once per week. Ointments are preferred to creams in most cases.
Untreated lichen sclerosus can result in progressive scarring, and there is a small risk of malignancy if there is continuing active disease.
With or without symptoms, a level of ongoing treatment is usually continued LIFELONG and an annual check-up is needed. We encourage women to learn to self-check their vulva. The regular use of moisturisers (like dermeze or sorbolene cream) can help with dryness
This condition can usually be diagnosed clinically based on characteristic skin changes but may require a skin biopsy.
RISK OF CANCER
Is very low, and may be more the result of long-term scratching rather than the disease itself. Lifelong yearly assessment should be a minimum in all cases. Any new, thickened area or ulcer that does not resolve with daily steroid ointment used for 3-4 weeks should be biopsied.
ROLE OF SURGERY
Scarring that results in narrowing of the vaginal entrance and splitting with penetrative sexual activity can be corrected surgically.
In men, occasionally the urethral opening may need dilating (meatal dilatation). If the foreskin becomes tight and difficult to retract (phimosis), circumcision may be needed.
Surgery is not a substitute for ongoing steroid medication.
The following web links may provide more information.
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 October 2017