The following information sheets are sent out to NLSSG's postal members in the UK. This leaflet is produced to give information to those who do not have computers and it is included here for family members, friends, nurses, doctors or anyone who comes into contact with someone who has lichen sclerosus and who does NOT have access to a computer, so that information can be printed out and passed on. The leaflet is widely available in UK hospitals and clinics. Previously known as lichen sclerosus et atrophicus, NLSSG has been informed that the internationally preferred name for the condition is now just lichen sclerosus.

Lichen Sclerosus (LS) is a poorly recognised, chronic inflammatory skin disease.  Any area of the skin can be affected but most commonly the anogenital area.  LS on other parts of the body is considered to be less common and is called extra genital lichen sclerosus.  LS mainly affects adult women.  However, it can and does affect women at any age and also men and young children.  There is no cure for the disease but treatment is available to help control the symptoms.  The cause is not known but it is considered to be an auto-immune skin condition having strong links with other auto-immune related conditions such as thyroid, vitiligo and pernicious anaemia.  There have been no official surveys or statistics to ascertain the number of patients affected overall by LS.  However, it is estimated that between one in 300 and one in 1000 people may be affected.  LS is not contagious and cannot be transmitted by sexual intercourse.  There is some speculation, as yet unproved, that LS may be genetic.

Symptoms include chronic, intractable itching and soreness of the vulval area.  The skin may split, causing stinging and pain.  The anal opening can also be affected in the same way.  The skin will sometimes split and bleed on passing bowel motions, causing discomfort and difficulty in cleaning the area.  (See later notes on vulval care).  The vulval skin becomes fragile and pale and white in appearance.  There is the possibility of increased susceptibility to infection and to bouts of thrush.  There can be atrophy (shrinking/wasting of the skin) causing the contours and features of the vulval area to reduce and change in appearance.  There is the possibility of narrowing of the vaginal opening.  LS is a vulval condition and does not extend into the vagina.  In some cases there may be fusion of the labia minora, the urethra (causing urination difficulties) and of the clitoris, which can become “buried”.  There may be a tendency for the skin to split or tear during sexual intercourse.  It may be necessary to abstain from intercourse for long periods of time until the symptoms can be brought under control. (“enforced celibacy”).  Blistering may occur but this is considered to be fairly rare.  There is a small risk of cancer which is currently estimated at between 3% and 5%. 

It is important to stress here that not everyone will have all the symptoms stated above.  Many do not experience itching, some will only have soreness.  Many will not have splitting skin.  Some may have itching and splitting skin and so on.  This does not mean that you do not have LS or that you are in anyway abnormal if you either do or do not have all of the symptoms stated.

Diagnosis can sometimes be difficult and has been known to  take several years.  This appears to be due to a lack of awareness amongst GPs who often misdiagnose and treat the condition for years as thrush.  (Some GPs may not have heard of the condition or have ever seen a case in their surgery during the course of their practice).  Patients may also be told that their symptoms are being caused by age, hormones, menopause, STD’s, vaginitis and psychological reasons.  If itching (or any of the other symptoms stated in the previous paragraph) have been present for 6 months to a year with no improvement, it is advisable to ask for a referral to a specialist.  (A gynaecologist or dermatologist).  Very often the presence of LS is “discovered” when a consultation has been sought for another unrelated condition.   Usually a skin biopsy will be performed to confirm the presence of LS and rule out any malignancy.  This involves taking a small piece of skin from the affected area (performed under local anaesthetic).

Treatment is to relieve the effects of symptoms only.  There is no treatment for the overall condition at this time.  Topical steroid creams/ointments are prescribed.  There is a wide range of preparations available.  Treatment can be very effective in relieving symptoms and is commenced after the biopsy has been performed.  Patients may notice considerable relief after about two weeks of treatment. It is advisable to continue the treatment for the full term of the course recommended by your consultant.  Give your treatment a fair chance to work and try not to just give up if you are not more comfortable only after a week.  Not everyone responds to the same type of steroid preparation and it may be necessary to persevere and persist with various products before relief is obtained.  Many women 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 consultant.  If you experience any long term burning sensations after using your treatment then do consult your healthcare professional as some people do experience reactions.  In fact, if you have any queries at all or you are uncertain about the amount of cream to use or have any anxieties at all, do ask your consultant to see you again.  Surgery is not a treatment for LS but is sometimes necessary to alleviate the effects of scarring, fusion and where the vaginal opening has narrowed (making intercourse difficult).  Read about steroids and emollients and other useful advice from NLSSG.

Vulval Care  The advice from the medical professionals is to avoid the use of all soaps, gels and scented products in the bath and shower as these may contain irritants.  (Try not to splash soap on the vulva in the shower).  Aqueous cream is recommended for cleaning the vulval area, it is inexpensive and readily available at your local pharmacy. It can also be very helpful and soothing for cleaning the anal area after bowel motions, applied to toilet tissue before use, it can help to ease that “scratchy feeling” toilet tissue, unfortunately, has on sensitive and damaged skin. (Try also to avoid using moisturised “wipes”).  Aqueous cream kept in the fridge can be helpful to just dab (not rubbed in) an ample amount onto the vulva to give a cooling, soothing effect.  Avoid wearing tights, jeans, or tight trousers.  White cotton underwear is often preferable.  Avoid using hard, scratchy flannels for washing the vulva and use your hand to apply the aqueous cream for washing.  Dab the vulval area gently to dry or try using a hairdryer on a cool setting and held well away from the skin. Also avoid washing underwear in biological washing powders, wash and rinse these items separately from your main wash.  Many members of this group wear long flowing skirts and no underwear when in the house and have found this to be very helpful and comfortable.  Other members find the use of Vaseline to be very beneficial but this should not be used in substitution for your steroid cream.  It is possible to purchase tights with an open crutch – Pretty Polly have a range called “Cool Spot” and BHS have “Body Free” stocking tights which leave the whole vulval area free.

Self Examination  It is recommended that you check the vulval area yourself on a regular basis.  This will enable you to see if there are any changes in the skin that may need to be discussed with your doctor.  A small magnifying shaving mirror is ideal for this purpose.  The self examination leaflet is available on this web site.

Lichen Sclerosus and Men The male form of LS was previously known as Balanitis Xerotica Obliterans.  The symptoms of LS in men are similar to those for women.  The penis is affected.  Symptoms include itching, soreness, inflammation and swelling of the glans of the penis (balanitis).  Whitened skin, cuts and splits on the penis.  Difficulty in retracting the foreskin and fusion of the foreskin.   Circumcision may be offered to resolve this.  Difficulty in urinating.  Difficulties with sexual intercourse.  Again, treatment is to relieve symptoms only and topical steroid preparations are prescribed.  It has been previously thought that LS in men did not affect the anal skin. However a significant number of men in the group have reported having anal itching and have subsequently been told that the cause was LS. If you are experiencing itching in the anal area, do consult your medical professional for advice on how to treat the anal skin. It is not advisable to "self treat" - always speak to your doctor and obtain advice about applying creams.There are now some men in the group who are willing to be contacted by others for mutual information sharing and support.  Please enquire via NLSSG office.

Lichen Sclerosus and Children Young girls with LS may experience vulval pain, soreness, and itching, splitting/fissures on passing bowel movements and often constipation as a result of this. Some experience blistering.  The child may have feelings of “urge incontinence”.  There is very often the same delay in diagnosis as for adults.  Certainly, the disease is extremely distressing both for the child and for parents.  The symptoms may disappear around puberty.  Information regarding childhood LS, for parents, appears to be very hard to come by.  The subject is sensitive, therefore this paragraph will be kept brief. 

NLSSG is currently working to gather information for parents of children with a view to producing specialised leaflets.  There are parent members in this group who are willing to be in touch with other parents for the purpose of shared information and support.  Contact will be strictly by application to NLSSG in the first instance.  Health care professionals working with children who have LS are actively encouraged to contact NLSSG either to obtain further information or to assist with the production of the same.

Confidentiality

NLSSG practices a strong code of confidentiality.

Being in touch with other LS patients There are members of the group who have expressed a wish to be in touch with members in their own area.  If this is something that appeals to you, please write for further information. NLSSG cannot promise that there will be another person in your area willing to be in touch but it is certainly worth enquiring.

Do you have Lichen Sclerosus? Many women who have contacted the group may not have LS.  They may have been searching for an answer to explain why they have had their symptoms for many years.  Therefore if you have been experiencing difficulty in obtaining a diagnosis, the following information may be helpful.  You can go along to a GUM Clinic without a referral from your GP.  (Either telephone or just walk in).  Most hospitals in the UK will have a GUM Clinic.  Other helpful organisations are the Well Woman Clinic, Family Planning and Menopause Clinics.

Have you recently been diagnosed with LS? Being diagnosed with LS can be an anxious and frightening experience. The isolation, embarrassment and feeling that there is no one to talk to can be very hard to cope with.  However, we share a common “emotional experience” with others who are diagnosed with other incurable illnesses such as breast cancer, arthritis, asthma etc – they share our concerns too.  It is hoped the information given here will help you to overcome any difficulties you may have been experiencing. Read more about emotions.

Aims of NLSSG

Useful Addresses

NLSSG does not endorse or recommend any particular treatment or product.  Always consult your medical adviser before making changes to your prescribed treatment.  This information must not be construed as an attempt to diagnose your symptoms.

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