Lichen Sclerosus

What causes lichen sclerosus

The exact cause is unknown. It is thought to be an autoimmune condition, where the immune system attacks the skin. Evidence includes:

• association with other autoimmune diseases, especially thyroid disease, vitiligo, alopecia areata and pernicious anemia
• family clustering in some cases
• hormonal factors, with peaks before puberty and after menopause
• skin friction or injury, which can trigger patches in the affected area (Koebner effect)
• in men, chronic contact with urine under the foreskin

It is not caused by poor hygiene and is not sexually transmitted.

Symptoms

In women and girls

• intense itching, often worse at night
• soreness, burning and raw skin
• white, thin, shiny or crinkly patches on the vulva and around the anus, sometimes in a figure-of-eight shape
• bruising, blood blisters, cracks and tears
• pain with sex and tampon insertion
• in children: constipation and painful bowel movements, bleeding, which may be mistaken for abuse

In men and boys

• white, firm, scarred foreskin
• a tight foreskin that becomes hard to pull back (phimosis)
• painful erections and sex
• narrowing of the urethral opening, with a weak or spraying urine stream

Changes over time

Without treatment, scarring can fuse the labia, bury the clitoris, narrow the vaginal opening, or tighten the foreskin and urethra. These changes can be prevented or limited with early treatment.

Diagnosis

Most cases are diagnosed by a dermatologist or gynecologist from the appearance of the skin. A skin biopsy is taken if the diagnosis is uncertain, if the condition does not respond to treatment, or if there is a lump, thickened area or ulcer that could be cancer. Blood tests for thyroid disease may be considered.

Conditions that can look similar include lichen planus, vaginal atrophy, vitiligo, eczema, psoriasis, thrush and vulvodynia, which causes pain without visible skin changes.

Treatment

Topical steroids

• Clobetasol propionate 0.05% ointment is the standard first treatment. A typical plan is once daily for 4 weeks, then alternate days for 4 weeks, then twice weekly for 4 weeks, as directed by your doctor.
• Most people then need long-term maintenance, for example once or twice a week, to prevent flares and scarring.
• Used this way on genital skin, these strong steroids are safe and do not usually thin the skin.

Other treatments

• Emollients and soap substitutes instead of soap, shower gels and bubble bath.
• Calcineurin inhibitor ointments (tacrolimus or pimecrolimus) as second-line options.
• Vaginal estrogen after menopause for associated atrophy.
• Vaginal dilators and pelvic floor physical therapy for narrowing and pain with sex.
• Circumcision for men with phimosis, which often cures lichen sclerosus of the penis.
• Surgery to release fused tissue or widen the urethra in selected cases.

Self-care

• wash with water or an emollient, and pat dry
• wear loose cotton underwear
• avoid scented products, wipes and tight clothing
• use a lubricant for sex
• in children, treat constipation

Complications

• scarring and changes in anatomy
• pain with sex and urinary problems
• vulvar cancer or penile squamous cell carcinoma, which develop in a small percentage of people with long-standing genital lichen sclerosus. Regular steroid treatment appears to lower this risk
• psychological distress and effects on relationships

Long-term follow-up

Check your skin monthly with a mirror and report any new lump, thickening, sore or color change. Most people with stable disease are reviewed once or twice a year by a doctor who knows the condition.

Frequently asked questions

What is lichen sclerosus?

Lichen sclerosus is a chronic inflammatory skin condition that causes thin, white, fragile skin, most often in the genital and anal area. It causes itching, soreness and tearing and can lead to scarring. It is not contagious and is likely autoimmune.

What causes lichen sclerosus?

The cause is not fully known. It is thought to be autoimmune and is linked to other autoimmune conditions such as thyroid disease and vitiligo. Genetics, hormones and skin friction may play a role. It is not caused by poor hygiene or infection.

How is lichen sclerosus treated?

The main treatment is a strong steroid ointment, usually clobetasol, applied daily for several weeks and then less often for maintenance. Emollients, avoiding irritants, and in men, circumcision for a tight foreskin, are also used. Most people respond well.

Does lichen sclerosus increase cancer risk?

Yes, slightly. A small percentage of people with genital lichen sclerosus develop squamous cell carcinoma over many years. Regular treatment with steroid ointment and long-term checks, plus reporting any new lump or sore promptly, help reduce and catch this risk early.

Can lichen sclerosus be cured?

Genital lichen sclerosus in women is usually long-term and is controlled rather than cured, with maintenance treatment. In men, circumcision often cures penile lichen sclerosus. In some girls, symptoms improve around puberty, but follow-up is still advised.