Profile of an intimate skin disease

Lichen sclerosus: symptoms, causes, diagnosis

With a prevalence of about 0.1 % in children to 3 % in women over 80, lichen sclerosus affects several hundred thousand people in Germany alone. Nevertheless, many affected people suffer from this chronic skin problem without knowing their diagnosis. Since the inflammatory disease mainly occurs in the genital area, it often remains a taboo subject. Yet it can be treated effectively with optimal main care.

What is lichen sclerosus?

Lichen sclerosus is a non-contagious, chronic inflammatory skin disease that usually occurs in the genital area and is mainly manifested by burning, itching and a rash.

Who is affected?

Women get the disease about four times more often than men. But the latter can also be affected by lichen sclerosus - as well as, in rarer cases, children, especially girls before puberty.

The prevalence of the disease increases with age. However, the first symptoms usually appear in women well before the menopause. However, they often remain untreated and also undiagnosed with regard to the cause. Diagnosis and treatment usually take place a few years later, when the symptoms become more noticeable.

Where on the body does the disease occur?

  • In most cases, the skin disease occurs in the anogenital region, i.e. in the genital and anal areas.
  • In women, the vulva, urethral orifice and anus (region around the anus) can be particularly affected, but not the adjacent external mucous membranes of the vagina.
  • In men, the foreskin of the penis, the glans and/or the urethral orifice are affected - and the anus is also frequently affected.
  • In a few cases, the disease occurs additionally or exclusively in the mouth, at the fold of the lower breast or in the shoulder and back area.

What are the symptoms?

Typical complaints include:

  • itching, burning, inflammation, pain
  • whitish skin changes
  • Redness and nodules
  • Scarring around the clitoris
  • Anal fissures, i.e. painful tears or open wounds in the anal area
  • Pain or problems during sexual intercourse
  • Narrowing of the foreskin and resulting erectile dysfunction
  • Pain during urination or defecation

What is known about the causes?

The causes have not yet been conclusively researched. Experts suggest genetic (familial accumulation), hormonal (increased occurrence during menopause) and autoimmune causes (inflammatory processes) as possibilities. It is certain that lichen sclerosus is not transmissible, i.e. not contagious.

Is there any prospect of a cure?

Lichen sclerosus is not curable in the strict sense. However, through regular care with ointments, the skin disorder can be treated so well that in the best case, over long phases or permanently, no more symptoms occur.

How is the medical diagnosis made?

In the best case, specialists in gynaecology, urology or dermatology already make the right diagnosis based on the skin and symptoms, which is usually followed by glucocorticoid treatment ("cortisone ointment"). However, similar symptoms also occur with other diseases, including fungal infections, herpes infections or sexually transmitted diseases (STDs) such as chlamydia infections.

In such cases, the visual diagnosis can be confirmed by a punch biopsy. This is necessary if there is still no diagnostic certainty or if there is no improvement in the clinical picture after treatment. A biopsy is also useful in the advanced stage of the disease, as this is associated with an increased risk of cancer.

How does the forecast behave?

Due to the chronic course of the disease, symptoms can reoccur over the course of a lifetime and fuel the disease again. However, simple care and therapy measures alleviate the stressful skin disorder until it is symptom-free in the best case. According to current findings, early treatment and regular main care significantly influence and improve the course of the disease and also reduce the risk of disease-related cancer in the genital area.

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