Lichen sclerosus
What is it?
Lichen sclerosus is a skin disease that affects the genital region in children and adults of both sexes. Sometimes lichen sclerosus may involve the skin around the anus in girls and women. Lichen sclerosus is more common in women than men. Occasionally lichen sclerosus occurs on other parts of the body.
What causes it?
The cause of lichen sclerosus remains unknown despite much research. Lichen sclerosus is most likely an autoimmune disease where your immune system attacks your skin, for no known reason. Importantly lichen sclerosus is not due to stress, poor diet and is not an infectious disease. Lichen sclerosus is not a sexually acquired infection (STD) so cannot be passed onto your partner by sexual contact.
What does it look like?
Lichen sclerosus produces whitening and thickening of the vulva in women (sparing the vagina) and the penis and foreskin in men. Occasionally genital skin is thinned resulting in cuts, tears, bleeding or bruising. Itchiness of the vulva or penis and foreskin is common. Males may notice tightening of the foreskin (prepuce) making it more difficult to retract the foreskin (phimosis), resulting in pain with erections and sexual activity.
How is it diagnosed?
It takes skill to make the correct diagnosis of lichen sclerosus. Sometimes the correct diagnosis is only made after many months or years. Many doctors may have been seen before the correct diagnosis is made. Vulval itch or discomfort is commonly mistaken for vaginal “candidiasis” or “thrush”. A small specimen of skin (skin biopsy) is often taken to help confirm the diagnosis of lichen sclerosus.
Why is it important to treat genital lichen sclerosus?
Lichen sclerosus may be simply a cosmetic problem causing whitening of the vulva in women or whitening of the penis and foreskin in boys and men. Lichen sclerosus is usually itchy. Thinning of the skin of the vulva or penis may cause bruising.
Lichen sclerosus may cause scarring of the genitalia. Women may notice narrowing of their vaginal opening resulting in pain with intercourse. Uncircumcised males (with a foreskin) may find it difficult or painful to pull back their foreskin (phimosis) resulting in discomfort and pain with erections and sexual activity. Phimosis may continue from childhood or appear later as a teenager or as an adult. Urologists often refer to lichen sclerosus with phimosis as “balanitis xerotica obliterans” (BXO). Very severe lichen sclerosus in men may rarely cause difficulty in passing urine due to narrowing of the urethra (the tube connecting the bladder to the opening of the penis).
There is a very small risk (about 5% chance) of a woman developing cancer of the vulva after many years if vulval lichen sclerosus is untreated. Early treatment of lichen sclerosus may prevent scarring of the vulva and probably eliminates the risk of developing cancer of the vulva later. Similarly there is a small risk of males developing cancer of the penis after many years of untreated genital lichen sclerosus, especially if uncircumcised. Males circumcised for phimosis with penile lichen sclerosus may still develop cancer of the penis years after circumcision but this is uncommon.
How is it treated?
Find a doctor who is an expert in diagnosing and treating genital lichen sclerosus. Finding an expert is not always easy as different patients with genital lichen sclerosus are looked after by different doctors, including family doctors (GPs), gynaecologists, urologists, sexual health physicians, paediatricians and dermatologists. A dermatologist is the most appropriate specialist to manage patients with lichen sclerosus as genital lichen sclerosus is a skin disease of genitalia. Ask your GP for a referral to a dermatologist if you have symptoms suggestive of genital skin disease or if you have been diagnosed with genital lichen sclerosus.
Lichen sclerosus is managed by firstly trying to reduce irritants to the skin by replacing soap with a non-soap wash and using a body moisturiser daily after washing. A more oily moisturiser may be used as a lubricant for sexual activity.
A corticosteroid cream or ointment is prescribed to apply directly to the area of genital lichen sclerosus for 6 to 12 weeks, after which time the strength and frequency of the corticosteroid cream or ointment may be reduced. Corticosteroid creams or ointments are quite safe to use on the genital or anal skin under the supervision of your dermatologist, despite concerns sometimes expressed in the media or on the internet (“Dr Google”) and even by some doctors and pharmacists,
Sometimes circumcision (surgical removal of the foreskin) may be needed if tightening of the foreskin (phimosis) does not improve with the topical corticosteroid cream or ointment. Very rarely surgery may be needed to correct persistent narrowing of the vaginal opening or urethra (where urine comes out). Any surgical procedure should only be recommended by an expert in genital lichen sclerosus.
Further specialist treatment is needed if cancer of the vulva or penis develops. Even though the risk is small, both women and men with genital lichen sclerosus need long-term follow-up to detect scarring of the genitals or development of cancer.
Most experts caring for women and men with genital lichen sclerosus believe that early treatment removes, or greatly minimises, the risk of developing genital cancer. Sadly, many men and women do not know they have genital lichen sclerosus, delaying early treatment. Even after successful treatment of your lichen sclerosus, a regular annual check-up with your doctor is needed.
This information has been written by Associate Professor Anthony Hall
Last updated 16/03/2017