What is Lichen Sclerosus ? (LS)
Lichen sclerosus (LS) is an uncommon skin disease that usually occurs on the skin of the vulva and around the anus. Although LS can occur on any part of the skin, it is almost always a genital condition.
Lichen sclerosus doesn’t always cause symptoms and can be picked up by chance because you happened to have a look for some other reason, or was discovered by your GP when you had a Pap test. However it is usually intensely itchy, and sometimes painful as a result of scratching and splitting. You may notice that sex has become uncomfortable and that your clitoris has become extra sensitive so any pressure on it feels like pain.
LS looks white, sometimes with purple flecks or blisters. Many women also notice that their vulva, clitoris and vaginal opening seems to be getting smaller and their inner lips are disappearing.
LS can also be found on any part of the skin but is most common on the neck, buttocks, inner thigh, shoulders and wrists. It usually looks like a white patch but can also look like multiple small white spots.
Although LS occurs in all age groups, it most often starts around menopause, typically in the 50’s. It can occur in children and in babies.
LS is an important condition for two reasons.
First, it can scar the vulva and make the vaginal opening smaller so that sex is painful. irst, it can scar the vulva and make the vaginal opening smaller so that sex is painful. Second it is linked to cancer of the vulva. This is not a high risk but research shows that 2-6% of untreated women with LS develop a cancer at some stage in their lives.
What causes LS?
The true reason for LS remains unknown, however we know that some patients with it may also have what is called “auto-immune disease”. That means something has gone wrong with your immune system so that it attacks your own body. The commonest of these diseases seen with LS are thyroid disease and vitiligo, a condition where colour is lost from the skin. We assume that because this occurs that LS itself is an autoimmune disease but we still cannot say for certain.
Having said all this, the majority of patients with LS are well with no sign of autoimmune disease; however a simple blood test can make sure.
LS can run in families. Mothers and daughters as well as sisters can be affected. So if you have LS, you should tell your relatives.
What does LS look like?
The classic appearance of LS is a white patch on the outside of the vulva but not going into the vagina. The surface looks slightly wrinkly. Sometimes you may notice splits, blood blisters or purple spots. The surface can feel rough and thickened.
The distribution of LS is also very variable. The classic textbook description is of a figure of eight encircling the vulva and anus. However LS can occur anywhere at all on the genital skin.
If LS has been left untreated for a long time, the inner lips (labia minora) look smaller than normal, the clitoris becomes smaller and the vaginal opening may also be reduced in size.
What is LS like in children?
LS is much rarer in children than adults but it looks exactly the same. It can start at any age but most commonly around age five.
Children with LS are itchy and sore, like adults, but they also commonly get constipated or have symptoms like a bladder infection. As a result they often get referred to paediatricians rather than skin specialists.
If LS is left untreated in children, they may also develop scarring and loss of the structure of their vulva, just like an adult.
Sexual abuse concerns often arise when children with LS are examined. LS does not mean a child has been sexually abused.
Diagnosis of LS
Although vulval LS has a very characteristic appearance a skin biopsy is usually done to confirm it in adults and to make sure there is no malignancy present. In children there is rarely a need for a biopsy because there is nothing else in this age group that looks the same that it could be confused with and no child with LS has ever been reported to have a malignancy.
When a diagnosis has been made it is usual to have a blood test to make sure there is no thyroid problem.
LS and cancer of the vulva
We know that patients with LS are at risk for vulval cancer. It does appear however that treatment minimises this risk.Vulval cancer looks like a lump or ulcer or a sore that doesn't heal. If you suspect you have LS and something like this develops, see your doctor right away.
This is why it is important to have a definite diagnosis made with a biopsy to confirm LS.
What treatment is used?
There are two phases of treatment for LS
It is now really well proven that potent topical cortisone cream is the best treatment for LS. The response is rapid and usually complete. LS is easy to treat, so long as you accept the need for cortisone.
Cortisone creams are extremely safe and effective for LS. There is NO DOWN SIDE. It is much safer to treat this condition than not to treat. There is no other well proven, effective topical treatment. PLEASE DO NOT DENY YOURSELF THIS TREATMENT BECAUSE OF ANYTHING YOU HAVE READ ABOUT HOW DANGEROUS CORTISONE CREAM IS.
Almost all patients with LS need ongoing treatment with weak cortisone cream to stay well, prevent scarring and minimise the risk of possible cancer. This treatment is also very safe long term in LS. There are very few risks and side effects if it is monitored regularly. Again, DO NOT DENY YOURSELF EFFECTIVE MAINTENANCE TREATMENT. See your doctor regularly for monitoring and reassurance that all is going to plan. This includes cancer checks. There are some doctors who don't believe that patients with LS need long term follow up. We don't agree with this approach. Early detection of vulval cancer could save your life.
If you have gone through menopause and have vaginal dryness, you will also benefit from the use of estrogen suppositories. Patients with LS find dryness even harder to deal with than those with normal skin. Ask your doctor.
Will I be cured by treatment?
LS in adults is a lifelong disease that rarely goes into remission even with long-term treatment. Most patients are unable to stop treatment without eventual relapse, although this may take many months to occur after treatment is stopped.
Children with LS also need long term treatment.
Teenagers with LS are a difficult group to follow up because they are so embarrassed about being examined. As a result they may stop having checkups, assuring their parents and doctors that they are fine when they are not, just to avoid a genital examination. A trusting relationship with their doctor prior to puberty is the best way to prevent this.
In the very unusual instances where patients have apparently remitted they need to be kept under long-term observation
Will I need any surgery?
If scarring has occurred this can be corrected with surgery but this is the only reason to ever have surgery for LS.
If you ever developed a vulval cancer this would be treated with surgery.
In the past LS was treated with surgery to remove the vulva. This is absolutely wrong and should never be performed anymore.
Can I have sex again?
However if you have been experiencing painful sex for a while before you were properly treated you may need some exercises to help you relax enough to get back into regular intercourse. See your doctor about this.