• Reference Number: HEY-726/2021
• Departments: Gynaecology
• Last Updated: 12 March 2021

Introduction

This leaflet has been produced to give you general information about your condition.  Most of your questions should have been answered by this leaflet.  It is not intended to replace the discussion between you and the healthcare team but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.

What is Lichen Sclerosus (LS)?

Lichen Sclerosus (LS) is not a well recognised chronic inflammatory skin disorder, which mainly affects the genitals, especially the vulval and peri-anal areas. The cause is still unknown, but it is thought that it may be genetic (hereditary) with an autoimmune component (this is where the body is ‘allergic’ to certain parts of itself). It causes chronic inflammation in the affected areas that ultimately make the skin very thin, and fragile.

Although it is considered a condition that mainly affects mature women, there are women of all ages with LS. Men can have the disorder and this affects the penis and sometimes the anal area. Children can also suffer from LS and it can sometimes affect other areas of the body.

When Lichen Sclerosis affects areas of the body other than the genitals, it is known as “extra genital lichen sclerosus”.

It has been found that there is a connection between LS and thyroid disease, vitiligo and other diseases. Some doctors consider that LS may be genetic.

It is not possible to get LS through sexual intercourse; it is not a sexually transmitted disease and it is not infectious. Lichen Sclerosis is not contagious.

What are the symptoms of Lichen Sclerosus?

Mild: no symptoms at all or just some uncomfortable itching.

Moderate: Soreness, itching and small skin tears in the folds of the vulva.

Severe symptoms would include:

• Chronic itching and soreness of the vulval area with pain.
• Splitting of the vulval skin, causing stinging and pain.
• Inflammation and sometimes swelling.
• Splitting and bleeding of the skin around the anal opening when passing bowel motions, causing pain and discomfort.
• Increased susceptibility to infection and thrush.
• “Shrinking” (atrophy) of the vulva area, change in shape and size of the area; this may cause urination difficulties and sexual problems.
• Changes in the appearance of affected skin.
• Pain and difficulties with sexual intercourse caused by narrowing of the vaginal opening, fusion of the labia, clitoral hood and urethra.
• Blisters and ulceration (considered to be uncommon).
• LS does not extend into the vagina.
• There is a small risk, estimated at between 3 to 5 percent of cancer of the vulva in mature women.
• Bruising can occur in the skin.

It is important to say that not everyone will experience all of the above symptoms; some people may not experience any symptoms at all and be surprised when LS is discovered whilst being examined for an unrelated condition.

What tests should be done?

A skin biopsy may be taken to establish the presence of LS and rule out any possibility of malignancy. It is essential to obtain a correct diagnosis, as without this a good treatment regime cannot be established.

What Is the treatment?

Lichen sclerosus remains a mystery condition for which there is no cure. However, symptoms may be alleviated by use of steroid creams. A very successful treatment regime regularly used in the UK, is a three-month course of topical steroid used initially twice daily and tapered off to occasional use as determined by your doctor, based on the lesion size and severity. In some cases, soreness can still persist with no apparent remedy. Although symptoms may improve or disappear, the condition often returns.

Will I need surgery?

Only in extreme situations is surgery performed. Surgery is not a treatment for LS but it is sometimes necessary to improve the effects of scarring and where the vaginal opening has narrowed, making intercourse difficult.

Self examination

It is recommended that you check the vulval area 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. Advice on performing the self examination is available from your clinic or on the lichen sclerosus website.

What can you do to help?

• Avoid soaps, bubble baths, deodorants and vaginal wipes from coming into contact with the vulval area. Plain water is suggested to wash with and you should always use an emollient (emollients are moisturising treatments applied directly to the skin to reduce water loss) and cover it with a protective film.  Showers are preferable rather than a bath. Apply a layer of the emollient prior to entering the bath or the shower, then allow area to soak or have water running over it. Gently pat the area dry. Do not use wet wipes.

• If passing urine makes your symptoms worse, then wash the urine away from the vulval area using a jug of warm water whilst on the toilet and apply a moisturiser twice daily.

• Clean the vulval area only once a day; avoiding scrubbing with flannels and brushes.

• Avoid creams that have not been prescribed e.g. over the counter thrush treatments.

• Avoid antiseptics in the bath.

• Wear loose-fitting cotton underwear.

• Try washing undergarments with WATER only, as fabric conditioners and biological washing powders contain potential irritants to the skin.

• Only use white or unbleached toilet tissue.

• When washing your hair, avoid allowing the shampoo from coming into contact with the vulval area.

• Use a moisturizer, especially if you have urinary incontinence. Coconut oil which has a high content of Caprylic acid is a good antiseptic thin emollient. It’s best for women with paraffin allergies, and is also useful for perineal massage.

• Organic cotton underwear and other natural healthcare products may help.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact:
Gynaecology Outpatients Women and Children’s Hospital (01482) 607829

Useful Contacts

Vulval Pain Society
VPS, PO Box 7804, Nottingham, NG3 5ZQ
Worldwide Lichen Sclerosus Support (formerly known as National Lichen Sclerosus Support Group) Contact admin@lichensclerosus.org with queries or telephone the Helpline 07765 947599. (Available weekdays from 4pm to 6pm, subject to volunteer availability)

Information on gynaecology services
https://www.hey.nhs.uk/gynaecology
www.vulvalpainsociety.org
www.natural-woman.com

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.