NATIONAL LICHEN SCLEROSUS SUPPORT GROUP
The first group in the world to be established for lichen sclerosus

A UK based voluntary group with an international membership and reputation

Celebrating 10 years of support and information 1997 - 2007
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SYMPTOMS
Not everyone will experience all of the symptoms below. Some patients may not experience any symptoms of itching and some have symptoms that can be seen but have not looked at their vulva in order to notice them. Often they are surprised when LS is discovered whilst being examined for an unrelated condition or having a colposcopy or PAP or cervical smear.
What are the symptoms of lichen sclerosus?
  • chronic itching and soreness of the vulval area
  • 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
  • the skin becomes fragile and pale and white in appearance and there is an increased susceptibility to infection and thrush
  • "shrinking" (atrophy) of the vulva area, change in shape and size of the area, sometimes causing urination difficulties and sexual problems
  • loss of vulval features, labia, clitoris
  • difficulties and discomfort with sexual intercourse possibly leading to total sexual abstinence and enforced celibacy for long periods of time
  • narrowing of the vaginal opening (see page on dilators)
  • fusion of the labia, clitoral hood and urethra
  • blisters and ulceration (considered to be uncommon)
  • LS does not extend into the vagina
  • in men the foreskin becomes "fused" or tight making retraction of the foreskin painful and urination may become difficult
  • there is a small risk, estimated at between 3% and 5%, of cancer of the vulva in adult women
  • for men there may also be a small risk of penile cancer
  • in children the white area often shows as a figure of 8 around the vulva and the anus

When this group started 10 years ago 'pain' was not included as a symptom of lichen sclerosus. In the past few years many medical professionals now include 'pain' as a symptom often also including symptoms of burning sensations. Pain and burning are also symptoms of other some vulval conditions and these other conditions may require different treatment and do not respond to treatment with topical steroids. The Vulva Helpline takes more and more calls about pain and women report that their steroid treament does not work to relieve their pain. They want to know what to do about the pain. If you are concerned about pain it is advisable to talk to your doctor who can assess your diagnosis as well as review your treatment to help you manage the pain.

 

 
 

Maintained by Fabia Brackenbury
Last updated 20 June 2007

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