Lichen Sclerosus

Introduction

What is it?

Lichen Sclerosus (LS) is an inflammatory skin disease. Any area of the skin can be affected but it most commonly affects the area around the genital area and anus. LS on other parts of the body is considered to be less common. The condition can be treated but there is currently no known cure.

In men the condition is sometimes referred to as Balanitis Xerotica Obliterans (BXO).

How common is it?

It can affect up to 1 in 300 people and can occur in men, women and children.

What causes it?

The cause is not known but it is considered to be an autoimmune skin condition. It has strong links with other autoimmune related conditions such as thyroid disease, vitiligo (a pigment disorder) and pernicious (vitamin-lacking) anaemia.

LS is not contagious and cannot be transmitted by sexual intercourse. It is also not caused by poor hygiene. There is some speculation, as yet unproven, that LS may be inherited.

What are the symptoms?

It is important to stress here that symptoms may vary from person to person and for each person they may change from time to time. Some people with LS can be completely without symptoms.

Symptoms can include chronic itching and soreness of the skin in the genital area. The skin may split or break open, causing stinging and pain. The anal opening can also be affected in the same way, causing discomfort on passing bowel motions and difficulty in cleaning the area. The skin may split or tear during sexual intercourse.

Both men and women may find sexual intercourse uncomfortable. It may be necessary to avoid penetrative intercourse until the symptoms can be brought under control.

Women may find having an internal examination painful. Men may find a tightening of the foreskin (phimosis) or sometimes a narrowing of the opening of the waterworks (meatus).

How is Lichen Sclerosus diagnosed?

Lichen Sclerosus is often diagnosed by its typical appearance. However, in some cases a skin biopsy under local anaesthetic is required. Depending on your other symptoms, your doctor may want to exclude other auto-immune conditions such as thyroid disease by checking a blood sample.

Diagnosis can sometimes be difficult and has been known to take some time. This may be because the symptoms are often initially misleading and can be confused with other conditions such as thrush.

Lichen Sclerosus might be noticed during a routine examination for other reasons in people who have no symptoms. Sometimes the skin will appear normal on examination or the signs are subtle and can be difficult to see.

You will receive the results of your biopsy through letter, phone call or within a follow up appointment.

What is there to see on examination?

In women the vulval skin becomes fragile, pale and white in appearance. Additionally there can be red or purple areas of bleeding into the skin. The skin may have a raised rough texture or plaque-like changes. There can be shrinking or scarring of the skin causing the vulval area to change in appearance. These changes can include narrowing of the vaginal opening and fusion of the labial folds or skin over the clitoris.

In men the skin of the tip of the penis (glans) or the foreskin becomes fragile, pale and white in appearance. Additionally there can be red or purple areas of bleeding into the skin. Shrinking or scarring of the foreskin (phimosis) can cause pain and difficulties with passing urine or having sexual intercourse.

How is it treated?

Treatment is usually with a course of strong steroid cream or ointment which often brings rapid relief of symptoms, but some people respond more slowly. Give your treatment a fair chance to work and try not to just give up if you are not more comfortable straight away. Many people experience quite long remissions in symptoms after treatment but sometimes the symptoms do return and further treatment is necessary.

You should always discuss this with either your GP or your specialist doctor. If you experience any long-term burning sensations after using your treatment then do consult your healthcare professional as some people do experience reactions.

Good genital skin care should be practiced at all times. Please see the relevant section below.

Vaginal dilators are suggested for women when they feel the vaginal entrance narrowing. They should be used on a regular basis, along with the other treatments.

Surgery is not a treatment for LS but is very occasionally used to alleviate the effects of scarring or fusion. Sometimes men may require circumcision when the tightening (phimosis) is too tight for ointments to resolve.

What are the long-term consequences of Lichen Sclerosus?

Sexual problems in men and women with Lichen Sclerosus are common, but not inevitable. When they occur, it is important for the person (and their partner, if they are in a relationship) to be aware that sexual problems can be treated, and that help is available.

When sexual problems are ignored, the person may find themselves in a position where (months or years later) their Lichen Sclerosus has improved, with or without treatment, but in the meantime they have lost their sexual desire, and may even be experiencing more general relationship difficulties as a result of long-term sexual avoidance.

In women difficulties such as Vaginismus (tensing of the vaginal muscles during penetration), low libido and poor arousal are common. Tension in the lower pelvic floor muscles during attempted sex can lead to increased pain and subsequent avoidance. In men erection problems can occur.

Should you wish further psycho-sexual support we would be more than happy to refer you to our services within Sandyford.

There is thought to be a small link between Lichen Sclerosus and skin cancer (between 2 – 4%). Some people are happy to self-exam and present if they notice any skin changes. Others are seen by their GP or at one of our Sandyford specialist clinics.

General care of the genital skin

Genital skin has less of a barrier than other skin surfaces and is more liable to irritation. ‘The blander the better’ is the usual teaching when it comes to applying products to the genital skin. Many products, even so-called ‘low-allergy’ products can irritate skin and perfumed products should be avoided. People experiencing genital symptoms may follow the advice below.

Avoid soaps, bubble-baths, deodorants, baby wipes, antiseptics and vaginal wipes from coming into contact with the genital area
Shower rather than bath and clean the genital area only once a day. Over-cleaning can aggravate genital symptoms
Washing with water on its own tends to cause dry skin. Use a soap substitute to clean the genital area e.g. aqueous cream, emulsifying ointment, Dermol 500.
Avoid scrubbing with flannels/sponges. Gently dab the genital area dry with a soft towel or use a hairdryer on a cool setting held away from the skin
Urine is an irritant to the skin. If passing urine makes your symptoms worse, then wash the urine away from the genital area using a jug of warm water whilst on the toilet
Wear loose-fitting silk or cotton underwear
Wear white or light-coloured underwear. Dark textile dyes may irritate the skin. Fabric conditioners and washing powders contain potential irritants to the skin.
Avoid coloured and medicated toilet paper
Avoid wearing nail varnish on finger nails if you tend to scratch
Try low allergy sanitary products but avoid wearing towels on a regular basis
Sleep without underwear
Some over-the-counter products may contain possible irritants, e.g baby/nappy creams, herbal creams and thrush treatments

Moisurisers (emollients) soothe the skin and will rehydrate dry areas. They are a vital part of the management of most chronic skin conditions. They are usually fragrance-free and less likely to irritate. Using one of these moisturisers every day can help relieve symptoms. They are also useful when you have no symptoms, to protect the skin and prevent flare-ups.

Products include aqueous cream BP, emulsifying ointment, soft paraffin, Epaderm and Dermol 500. It is important to find the moisturiser that suits you best. Even if the first one you try doesn’t work well, it is worth trying another one.

Emollients can be kept in the fridge and dabbed on to cool and soothe the skin as often as you like

Contacts and Information

The National Lichen Sclerosus Support Group www.lichensclerosus.org

The Vulval Pain Society www.vulvalpainsociety.org