Lichen Sclerosus
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Lichen sclerosus is a skin disorder that
can affect men, women, or children, but is most common in women. It usually
occurs on the vulva (the outer genitalia or sex organ) in women, but sometimes
develops on the head of the penis in men. Occasionally, lichen sclerosus is
seen on other parts of the body, especially the upper body, breasts, and upper
arms.
The symptoms are the same in children and adults. Early in the
disease, small, subtle white spots appear. These areas are usually slightly
shiny and smooth. As time goes on, the spots develop into bigger patches, and
the skin surface becomes thinned and crinkled. As a result, the skin tears
easily, and bright red or purple discoloration from bleeding inside the skin
is common. More severe cases of lichen sclerosus produce scarring that may
cause the inner lips of the vulva to shrink and disappear, the clitoris to
become covered with scar tissue, and the opening of the vagina to narrow.
Lichen sclerosus of the penis occurs almost exclusively in uncircumcised
men (those who have not had the foreskin removed). The foreskin can scar, tighten,
and shrink over the head of the penis. Skin on other areas of the body affected
by lichen sclerosus usually does not experience scarring.
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Although definitive data are not available, lichen sclerosus is
considered a rare disorder that can develop in people of all ages. It primarily
affects the vulva. Fewer than 1 in 20 women who have vulvar lichen sclerosus
have the disease on other skin surfaces. The disease is much less common in
childhood. In boys, it is a major cause of tightening of the foreskin, which
requires circumcision. Otherwise, it is very uncommon in men.
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Symptoms vary depending on the area affected. Patients experience
very different degrees of discomfort. When lichen sclerosus occurs on parts
of the body other than the genital area, most often there are no symptoms,
other than itching. If the disease is severe, bleeding, tearing, and blistering
caused by rubbing or bumping the skin can cause pain.
Very mild lichen sclerosus of the genital area may cause itching,
but often causes no symptoms at all. If the disease worsens, itching is the
most common symptom. Rarely, lichen sclerosus of the vulva may cause extreme
itching that interferes with sleep and daily activities. Rubbing or scratching
to relieve the itching can create painful sores and bruising, so that many
women must avoid sexual intercourse, tight clothing, tampons, riding bicycles,
and other common activities that involve pressure or friction. Urination can
be accompanied by burning or pain, and bleeding can occur, especially during
intercourse. When lichen sclerosus develops around the anus, the discomfort
can lead to constipation. This is particularly common in children.
Most men with genital lichen sclerosus have not been circumcised.
They sometimes experience difficulty pulling back the foreskin and have decreased
sensation in the tip of the penis. Occasionally, erections are painful, and
the urethra (the tube through which urine flows) can become narrow or obstructed.
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The cause is unknown, although an overactive immune system may
play a role. Some people may have a genetic tendency toward the disease, and
studies suggest that abnormal hormone levels may also play a role. Some scientists
believe that an infectious bacterium, called a spirochete, may cause the changes
in the immune system that lead to lichen sclerosus.
No, lichen sclerosus is not contagious.
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Doctors can diagnose an advanced case by looking at the skin. However,
early or mild disease often requires a biopsy (removal and examination of a
small sample of affected skin). Because other diseases of the genitalia can
look like lichen sclerosus, a biopsy is advised whenever the appearance of
the skin is not typical of lichen sclerosus.
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Patients with lichen sclerosus of nongenital skin often do not
need treatment because the symptoms are very mild and usually go away over
time. (The amount of time involved varies from patient to patient.)
However, lichen sclerosus of the genital skin should be treated,
even when it is not causing itching or pain, because it can lead to scarring
that may narrow openings in the genital area and interfere with either urination
or sexual intercourse or both. There is also a very small chance that cancer
may develop.
In uncircumcised men, circumcision is the most widely used therapy
for lichen sclerosus. This procedure removes the affected skin, and the disease
usually does not recur.
Prescription medications are required to treat vulvar lichen sclerosus,
nongenital lichen sclerosus that is causing symptoms, and lichen sclerosus
of the penis that is not cured by circumcision. The treatment of choice is
an ultrapotent topical corticosteroid. Daily use of these creams or ointments
can stop itching within a few days and restore the skin's normal texture and
strength after several months. However, treatment does not reverse the scarring
that may have already occurred.
Because ultrapotent corticosteroid creams and ointments are very
strong, frequent evaluation by a doctor is necessary to check the skin for
side effects when the medication is used every day. Once the symptoms are gone
and the skin has regained its strength, medication can be used less frequently,
although use must continue indefinitely, several times a week, to keep vulvar
lichen sclerosus in remission.
Ultrapotent Corticosteroids
Available by Prescription in the United States
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Young girls may not require lifelong treatment, since lichen sclerosus
can sometimes, but not always, disappear permanently at puberty. Scarring and
changes in skin color, however, may remain even after the symptoms have disappeared.
Because ultrapotent topical corticosteroids are so effective, other
therapies are rarely prescribed. The previous standard therapy was testosterone
ointment or cream, but this has recently been proven to produce no more benefit
than a placebo (inactive) cream. Another hormone cream, progesterone, was previously
used to treat the disease, but also has little beneficial effect. Retinoids,
or vitamin A-like medications, may be helpful for patients who cannot tolerate
or are not helped by ultrapotent topical corticosteroids.
Patients who need medication should ask their doctor how it works,
what side effects it might have, and why it is the best treatment for lichen
sclerosus.
For women and girls, surgery to remove the affected skin is not
an acceptable option. Surgery may be useful for scarring, but only after lichen
sclerosus is controlled with medication.
Sometimes, people do not respond to the ultrapotent topical corticosteroid.
Other factors, such as low estrogen levels that cause vaginal dryness and soreness,
a skin infection, or irritation or allergy to the medication, can keep symptoms
from clearing up. Your doctor may need to treat these factors as well. If you
feel that you are not improving as you would expect, talk to your doctor.
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Women with severe lichen sclerosus may not be able to have sexual
intercourse because of pain or scarring that narrows the entrance to the vagina.
However, proper treatment with an ultrapotent topical corticosteroid should
restore normal sexual ability, unless severe scarring has already narrowed
the vaginal opening. In this case, surgery may be needed to correct the problem,
but only after the disease has been controlled.
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Lichen sclerosus does not cause skin cancer. However, skin that
is scarred by lichen sclerosus is more likely to develop skin cancer. About
1 in 20 women with untreated vulvar lichen sclerosus develops skin cancer.
The frequency of skin cancer in men with lichen sclerosus is not known. It
is important for people who have the disease to receive proper treatment and
to see their doctor every 6 to 12 months, so that he or she can monitor and
treat any changes that might signal skin cancer.
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Lichen sclerosus is treated by dermatologists (skin doctors) and
by gynecologists if the female genitalia are involved. Urologists and primary
care health providers with a special interest in genital diseases also treat
this disease. To find a doctor who treats lichen sclerosus, ask your family
doctor for a referral, call a local or State department of health, look in
the local telephone directory, or contact a local medical center. The American
Academy of Dermatology also provides referrals to dermatologists in your area,
and the American College of Obstetricians and Gynecologists can refer you to
a gynecologist. The Directory of Medical Specialists, available at most public
libraries, lists dermatologists, gynecologists, and urologists in your area.
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American Academy of Dermatology
American College of Obstetricians and Gynecologists
American Urological Association
National Vulvodynia Association (NVA)
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