Lichen sclerosus

A long-term skin condition, usually genital, that is under-diagnosed for years. Strong steroid ointment controls it and reduces cancer risk.

What it is

A chronic inflammatory skin condition that usually affects the genital and anal skin, most often in women after the menopause and in girls before puberty, and in men on the foreskin.

It causes intense itching, white thinned or thickened patches, splitting and scarring. Left untreated, scarring can fuse the labia, bury the clitoris, narrow the vaginal opening, and in men cause a tight foreskin.

It is substantially under-diagnosed. Symptoms are attributed to thrush, to the menopause, or to hygiene, and women commonly report years of itching before anybody looks and names it. In girls, itching and soreness around the genitals and painful constipation from fear of opening the bowels is a classic presentation, and it is sometimes wrongly considered a safeguarding concern, which is distressing for families.

**Treatment is a potent topical steroid ointment**, used properly, and it works. Long-term maintenance use is appropriate here, contrary to the general instinct to use steroids sparingly, and under-treatment is the main reason people continue to suffer.

There is a small increased risk of vulval or penile cancer, and good control with steroid appears to reduce it. Any lump, ulcer or thickened area that does not respond to treatment needs urgent assessment.

It is not contagious and not sexually transmitted.

Signs you might notice

Intense itching, often worse at night.

White, shiny, thinned or crinkled skin, sometimes described as cigarette paper.

Soreness, splitting and cracking, particularly with sex or wiping.

Bruising or blood blisters in the affected skin.

Pain on passing urine, and pain or bleeding on opening the bowels.

Loss of normal architecture: labia fusing, the clitoris becoming buried, a narrowing opening.

In men, a tight foreskin, difficulty retracting it, and splitting.

In girls, itching, soreness, and constipation from painful defecation.

Urgent: any lump, ulcer, raised area or persistent sore that does not settle with treatment, which needs assessment for cancer.

How it can affect day-to-day life

Embarrassment is the main obstacle to diagnosis, and many people never mention it. Asking directly, in an ordinary tone, is what surfaces it.

Under-treatment is the second obstacle. People are given a potent steroid, frightened by the words potent steroid, use it for a week, and stop. The correct approach is a defined intensive course followed by long-term maintenance, and it needs explaining properly.

Soap, shower gel, bubble bath and wipes all worsen it. A soap substitute and an emollient used as a barrier are part of the treatment, not an optional extra.

Sex can become painful or impossible, and this is rarely asked about. Lubricants, dilators, treatment of the underlying disease and sometimes surgery all help.

Annual review is recommended to check control and to look for changes, and it is often not arranged.

Autoimmune conditions, particularly thyroid disease, are more common in people with it and worth checking.

Supporting someone well

Ask for someone to look. The diagnosis is made by examination and it cannot be made otherwise.

Use the steroid ointment exactly as prescribed, including the maintenance phase. Under-use is the commonest reason it fails.

Stop soap, shower gel, bubble bath and wipes. Use a soap substitute and an emollient barrier.

Ask for annual review, and report any lump, ulcer or non-healing area urgently.

Ask about sex, dilators and lubricants; it will not be raised otherwise.

For girls, treat it and treat the associated constipation; both matter.

Ask for thyroid function testing.

Do not accept repeated thrush treatment for persistent itching that has never been examined.

Where to get help

A GP practice for examination and treatment; dermatology, gynaecology or urology for difficult cases.

A specialist vulval clinic where one exists.

British Association of Dermatologists publish a patient leaflet on lichen sclerosus.

British Skin Foundation for general skin condition information.