lichen sclerosus

Lichen sclerosus is the chronic inflammation of the skin accompanied by white patches and often severe itching and pain in the genital area. It is primarily recorded in post-menopausal women but can also affect men, younger adults and children.

The altered areas of skin typically appear on the labia but also in the anal region as well as on the head of the penis (glans) and foreskin in the case of men. In rarer cases, the skin changes also occur outside the genital area.

As the condition progresses, the vaginal area can become scarred or men can experience a tight foreskin (phimosis). In some cases, a patient’s sex life is also affected and urination or bowel movements can be painful. In the long term, some people with lichen sclerosus can also develop skin cancer in the genital area.

Consistent treatment with barrier creams and anti-inflammatory cortisone ointments can often significantly alleviate the symptoms and control the condition. In the case of scarring and adhesions, surgery can sometimes be expedient.

It is important for people with lichen sclerosus to properly look after the skin in their genital area and avoid unnecessary irritation, for example due to very tight clothing. Talking to other people with lichen sclerosus is often helpful as the condition can be very psychologically stressful.

The symptoms vary depending on people’s age and gender. Lichen sclerosus most commonly affects the vulva, women’s and girls’ external genital area. In the case of men and boys with the condition, it particularly affects the penis.

Lichen sclerosus on the vulva

The typical symptoms include:

• initially red then white patches of altered skin on the labia and clitoris.
• severe itching or pain
• small tears and bleeding, partly due to severe scratching
• pain during sexual intercourse or when urinating
• constipation, especially in the case of children

Lichen sclerosus on the penis

The most common symptoms here include:

• white and hardened areas on the head (glans) and foreskin
• tight foreskin (phimosis)
• difficulties urinating
• painful erections

Lichen sclerosus can also occasionally affect areas of skin outside the genital area. In such cases, white, thin-looking patches of skin can be seen under the breasts or on the inner thighs, buttocks, lower back, neck, shoulders or elbows, for example.

Lichen sclerosus is thought to be an autoimmune disease, i.e. a condition where the immune system attacks the body’s own tissue. The result is chronic inflammation of the affected areas of skin. The skin becomes thin and sensitive, changes color and itches.

The precise triggers are as yet unknown. Congenital factors, chronic irritation, tissue damage and infections presumably play a part.

As lichen sclerosus primarily affects post-menopausal women but also girls before puberty, hormonal influences are also likely to play an important role.

Lichen sclerosus tends to occur in phases over many years with symptoms of varying severity. Sometimes the condition has no symptoms and goes unnoticed for a long time. If lichen sclerosus occurs during childhood, it sometimes seems to disappear during puberty but then re-occurs again afterwards.

If left untreated, a chronic condition can often lead to complications, especially scarring and adhesions in the genital area: the labia minora can shrink and stick together, the vaginal opening can become narrower and the clitoral hood can become tighter. In men, the foreskin and urethra tighten. This is accompanied by difficulties urinating and pain during sex.

In addition, lichen sclerosus can result in more common infections in the genital area due to yeast fungi, herpes viruses or bacteria, for example. Over the long term, there is also a slightly higher risk of cancer (a carcinoma) of the vulva, penis or anus.

Doctors can usually diagnose lichen sclerosus based on the typical symptoms by performing a physical examination. Occasionally, a swab is taken to eliminate the possibility of an infection. A tissue sample (biopsy) can be taken to confirm the diagnosis.

Lichen sclerosus is primarily treated using anti-inflammatory cortisone ointments, which are applied to the affected areas of skin. This usually alleviates the symptoms – the progression of the disease slows or even stops entirely.

Early and consistent treatment may prevent the later formation of scars and the development of cancer.

Surgery is sometimes wise, especially in men and boys with a tight foreskin. This can be successfully remedied through circumcision, which can sometimes completely cure the condition in the early stages.

Surgery can also sometimes help women with scarring or adhesions on the vulva although the results of successful surgery are not always permanent. “Dilators” can be used to widen a narrowed vaginal opening.

Other treatment methods are also being trialled, such as special laser or light therapies.

If skin cancer is detected as the condition progresses, surgery is always required.

It is also important for patients to monitor their own symptoms at certain intervals. In the case of changes to the skin on the vulva, this can be done using a mirror.

Good skin care and several everyday measures can also help to alleviate the condition. These include:

• regularly washing the genital area, but carefully and without soap
• applying barrier creams to sensitive areas of skin
• avoiding tight, abrasive clothing
• using a soft saddle when cycling
• trying not to scratch the affected areas of skin

Lichen sclerosus can greatly affect people’s quality of life: pain, itching and changes to the genital area can be very stressful. Some people feel ashamed, start to see themselves differently or are afraid of further episodes. Speaking to others with this skin condition can really help here.

Self-help groups offer people with lichen sclerosus and their loved ones a way of obtaining information and advice, and of sharing personal experiences.

A database of self-help services can be found on the website of the National Contact and Information Point For Encouraging and Supporting Self-Help Groups (Nationale Kontakt- und Informationsstelle zur Anregung und Unterstützung von Selbsthilfegruppen – NAKOS).