Lichen sclerosus

If you've had persistent vulvar itching, white or porcelain-coloured patches of skin, painful sex, tearing or fissures that keep recurring, or a sense that the architecture down there's quietly changing — you may have lichen sclerosus. It's common, it's treatable, and people routinely live with it for 5–10 years before someone names it. Treatment is almost always a topical steroid, and the goal of treatment isn't just comfort: it's preventing the small but real cancer risk that comes from untreated long-standing disease.

Lichen sclerosus is an inflammatory skin disease, not an infection. LS isn't caused by anything you did or didn't wash. It's autoimmune-spectrum inflammation that thins, whitens and scars the vulvar skin over time. It isn't contagious, not sexually transmitted, and has nothing to do with hygiene. The strongest known associations are with other autoimmune conditions (thyroid disease, vitiligo, alopecia areata).

The classic picture: white patches, itch, fissures, architectural change. Look for porcelain-white, slightly crinkly or 'cigarette-paper' patches on the labia, around the clitoral hood and around the anus (often in a figure-of-eight pattern). Itch is the dominant symptom, often worst at night. Over time, the labia minora can fuse, the clitoral hood can seal over, and the vaginal opening can narrow. Painful sex and recurrent tearing are common.

It's almost always misdiagnosed first as thrush or atrophy. If you've been treated for thrush three times in a row with no benefit, or told it's 'just vaginal atrophy' but the itch is dominant and the skin looks white rather than just thin and pink, ask specifically about lichen sclerosus. Vaginal atrophy and LS can co-exist, but the treatments differ.

The cancer risk is small but real — and treatment essentially removes it. Untreated, long-standing LS carries roughly a 2–5% lifetime risk of vulvar squamous cell carcinoma. Consistently treated LS (steroid maintenance, regular review) reduces that risk to roughly baseline. This is the single best reason to push for diagnosis and to keep using the steroid even when symptoms calm down.

Diagnosis is clinical; biopsy if uncertain. A vulval dermatologist or specialist gynaecologist usually diagnoses LS by looking. A small punch biopsy under local anaesthetic is sometimes done if the picture is atypical or to rule out other lichen conditions (lichen planus, lichen simplex). Asking for a vulval clinic referral is reasonable if your GP hasn't seen many cases.

First-line treatment is a high-potency topical steroid, with a specific tapering schedule. Self-treatment isn't advised, but understanding the protocol helps you advocate for it.

Clobetasol propionate 0.05% ointment — the standard of care. Most international guidelines recommend daily application of clobetasol ointment for the first 4–12 weeks (an amount roughly the size of a pea each time), tapering to alternate nights, then twice-weekly maintenance for life. Ointment, not cream — ointment penetrates better and contains fewer irritants. It's safe long-term on vulvar skin when used as directed.

Vaginal estrogen, in addition, if there's atrophy. LS often co-exists with genitourinary syndrome of menopause. Vaginal estrogen cream or pessaries don't treat the LS itself, but they treat the underlying tissue thinness and make the steroid work better. Worth asking about both at the same appointment.

Plain emollients for everything else. Use a fragrance-free ointment-based emollient (Epaderm, Hydromol or plain emulsifying ointment) as a soap substitute and barrier. Avoid wipes, scented washes, bubble bath, and 'feminine hygiene' anything. Cotton underwear, no tight gym leggings for long sessions.

Sex, when the architecture has changed. Once treatment is established, vaginal dilators, vaginal estrogen, ample lube and patient re-introduction often restore comfortable sex. Some people benefit from vulvar physiotherapy or a brief course with a sex therapist who understands LS. Surgical correction of fused labia or a narrowed introitus is occasionally needed but only after the skin is calm.

Stay on maintenance even when it feels fine. The most common cause of LS flares and progression is stopping the steroid because the symptoms have settled. Twice-weekly maintenance, indefinitely, is what keeps the architecture stable and the cancer risk low. Treat it like brushing your teeth.

Annual specialist review. Once diagnosed, an annual vulval clinic check (or with a GP confident in vulval skin) is the recommended cadence. Bring a phone photo if anything has changed between visits.

What's being studied: hyaluronic acid injections. A small 2022 study from Rome (Tedesco et al., Dermatologic Therapy) gave 20 people with biopsy-confirmed vulvar LS three monthly injections of a hyaluronic acid gel. At 6 months, itching, pain and burning were reported less often, quality-of-life scores improved, and no side effects were reported. It had no comparison group and no placebo, so this is early evidence. It's not a replacement for steroid ointment. It may be worth asking a vulval specialist about if symptoms continue despite standard treatment. Source: pubmed.ncbi.nlm.nih.gov/35094456