Lichen sclerosus: symptoms, treatment and living with it

The NHS says lichen sclerosus cannot be cured, but a strong prescription steroid ointment usually helps relieve the symptoms. You may need to use the ointment regularly for a few months to get symptoms under control, and afterwards you may need other products, such as a weaker steroid ointment or a moisturising cream, to help manage them.

BAD gives more detail for women. The most effective treatment is a strong steroid ointment, with clobetasol propionate 0.05% most often used. It stops the inflammation and softens the affected skin. It says not to worry if the packaging warns against use on genital skin, because clobetasol propionate 0.05% is safe for this condition, and that weaker steroid ointments are not effective in controlling the disease or preventing skin changes.

BAD describes a typical three-month course after diagnosis: once a day in the first month, once every two days in the second month and twice a week in the third. After that your dermatologist will advise how and when to apply it. Its leaflet for men describes clobetasol propionate and diflucortolone valerate and says a maintenance plan may be needed, which may include moisturisers and intermittent use of less strong steroids.

Follow the instructions you are given for the ointment; the NHS says the doctor will tell you how often to use it. If the ointment is not helping, go back to your GP or specialist rather than stopping or changing the product yourself.

The NHS says lichen sclerosus causes patches on the skin that are usually itchy, white, smooth or crinkled, and easily damaged, so they may bleed or hurt if rubbed or scratched. The patches can appear anywhere but are most often around the opening of the vagina (vulva) and anus, and on the foreskin and end of the penis.

BAD says the affected skin can become paler, white and shiny, and is typically thinner than usual but can sometimes become raised and thickened. When the skin around the anus is also affected it describes a figure-of-eight pattern. Scratching may break the skin and be painful, and small blood blisters, blisters or cracks (fissures) can appear.

Some people have few or no symptoms. BAD says that in some people patches appear on non-genital skin, where they may be itchy but often do not cause other symptoms; these look like small white, slightly raised areas that can join up to form white patches with a wrinkled, tissue-paper surface.

• Itchy white patches, smooth or crinkled.

• Skin that tears, bleeds or hurts if rubbed.

• Soreness or burning, especially during or after sex.

• Painful sex because the vulva may shrink or tighten, or a foreskin that tightens and makes erections painful.

• Difficulty or discomfort when peeing or pooing if there is scarring.

• In children, constipation is a common symptom when the skin around the anus is affected (BAD).

BAD describes lichen sclerosus (LS) as a long-term inflammatory skin condition that can affect any part of the skin but most often affects the vulval skin and the skin around the anus in women, and the foreskin and tip of the penis in men. It can start in childhood or adulthood, and in women is most common after the menopause.

Because it can scar over time, early diagnosis and treatment are worthwhile. The NHS says that although treatment helps, the affected skin can sometimes become scarred and tight, the vulva may shrink with the clitoris and inner lips often affected, and this can cause discomfort when peeing, pooing and during sex.

BAD says the diagnosis can usually be made from how the condition looks by a healthcare professional experienced in the condition, and that a skin biopsy is sometimes needed if there is doubt, an open sore or a thickened area. It adds that all children should be seen by a specialist for diagnosis.

The NHS says the cause is unknown. It might be caused by the immune system mistakenly attacking and damaging the skin. BAD says that the cause is not fully understood and that it can be linked to autoimmune conditions such as vitiligo and thyroid disease, though it is not yet clear whether lichen sclerosus is itself an autoimmune condition.

Both say that friction or damage can trigger or worsen it. BAD adds that irritation from urine leakage or from wearing incontinence pads or panty liners can make symptoms worse, and that it is not known to be hereditary, although it occasionally occurs in relatives. In men, BAD says it almost never occurs in men circumcised early in life and that trapped urine under the foreskin may play a part.

No. The NHS says lichen sclerosus is not caused by an infection, is not contagious and cannot be spread to other people through close contact, including sex. It is not caused by poor personal hygiene. BAD agrees that it cannot be spread by touching, including sexual intercourse, and in men that it cannot be passed to a sexual partner.

The NHS and BAD give similar advice to protect the skin. If sex is painful because of tightening, BAD suggests lubricants and, if needed, vaginal dilators, with specialist referral if the problem continues.

• Wash with an emollient soap substitute instead of regular soap; ask a doctor or pharmacist for suitable products.

• Gently dab the area dry after peeing; BAD says to reduce contact between urine and skin.

• Apply a barrier cream or ointment, such as petroleum jelly, to affected areas.

• Wear cotton or silk underwear and avoid tight or restrictive clothes.

• Avoid scented soaps, bubble bath and shower gel; BAD also says to avoid wet wipes.

• Avoid panty liners where possible or use fragrance-free ones.

• Do not scratch or rub the affected skin.

• Avoid activities such as cycling or horse riding until symptoms improve (NHS).

• Do not smoke; BAD says to stop smoking to reduce risk. The NHS also warns that emollients can make fabrics catch fire more easily, so keep away from naked flames.

The NHS says lichen sclerosus increases your risk of cancer on the vulva, penis or anus, but the risk is low. It suggests checking yourself regularly and seeing a GP if you are worried. Symptoms to look for include a lump, a change in skin texture such as thickening, or an ulcer that does not go away.

BAD says there is a small risk (less than 5 out of 100) of developing a skin cancer in the affected areas on the vulva, which can look like lumps, ulcers or crusted areas, and that good control of the condition reduces this risk further. It recommends lifelong regular self-examination for all females who have had genital lichen sclerosus, and seeing a GP if skin changes such as thickening, soreness or ulceration last more than two weeks despite steroid ointment.

For men, BAD says there is a link between lichen sclerosus and penis cancer in some men, but it is rare, and that seeing a doctor is important if the foreskin becomes too tight to retract, as there may be an increased risk of cancer if this is left untreated.

BAD says that if lichen sclerosus starts in childhood and is properly treated it often settles by puberty in most girls, but may come back later in life. In boys it usually affects the foreskin and tip of the penis and can cause tightening of the foreskin (phimosis); BAD advises referral to a dermatologist and says usually no tests are needed.

In adult men, BAD describes discomfort, itching, burning and soreness, a foreskin that becomes tighter and harder to retract, and sometimes spraying of urine when the tip of the penis is affected. Strong steroid ointments reduce the need for surgery; if the foreskin is too tight to function and creams do not soften it, referral to a urologist for circumcision or other surgery may be necessary, which may cure the condition in some men.

The NHS says to see a GP if you have an itchy white patch on your genitals or skin, if you have been diagnosed and treatment is not helping, or if you have pain when going to the toilet or having sex. A GP may refer you to a specialist for tests and treatment.

See a GP promptly for any new lump, ulcer that does not heal or skin thickening in an affected area.

On the NHS the route is usually through your GP, who can start treatment with a strong steroid ointment and refer you to a dermatologist or a gynaecology or urology clinic for confirmation, biopsy or follow-up if needed. BAD says that diagnosis is best made by someone experienced in the condition.

You can also arrange a private dermatology or gynaecology appointment. The assessment and treatments are the same in principle. Whichever route you use, ask how often you will be reviewed and what skin changes should prompt an earlier appointment.