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about . . .

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)

National Institutes of Health

Public Health Service • U.S. Department of Health and Human Services

Lichen

Sclerosus
This booklet is not copyrighted. Readers are encouraged

to duplicate and distribute as many copies as needed.

Additional copies of this booklet are available from

National Institute of Arthritis and Musculoskeletal

and Skin Diseases 

NIAMS/National Institutes of Health

1 AMS Circle

Bethesda, MD 20892–3675

You can also find this booklet on the NIAMS Web site at

www.niams.nih.gov/hi/topics/lichen/lichen.htm.

For Your Information

This publication contains information about medications

used to treat the health condition discussed here. When

this booklet was printed, we included the most up-to-date

(accurate) information available. Occasionally, new

information on medication is released.

For updates and for any questions about any medications

you are taking, please contact the U.S. Food and Drug

Administration at 1–888–INFO–FDA (1–888–463–6332,

a toll-free call) or visit their Web site at www.fda.gov.
Table of Contents

What Is Lichen Sclerosus? . . . . . . . . . . . . . . . . . . . . . . . . . . . 1

How Common Is It? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

What Are the Symptoms? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2

What Causes Lichen Sclerosus? . . . . . . . . . . . . . . . . . . . . . . . 3

Is It Contagious? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

How Is It Diagnosed? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

How Is It Treated? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4

Can People With Lichen Sclerosus 

Have Sexual Intercourse? . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7

Is Lichen Sclerosus Related to Cancer? . . . . . . . . . . . . . . . . . 7

What Kind of Doctor Treats Lichen Sclerosus? . . . . . . . . . . 8

Where Can People Find More Information

About Lichen Sclerosus? . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8

Lichen Sclerosus
This booklet contains general information about lichen

sclerosus. It describes what lichen sclerosus is and how it is

diagnosed and treated. If you have further questions after

reading this booklet, you may wish to discuss them with 

your doctor.

What Is Lichen Sclerosus?

Lichen sclerosus (LIKE-in skler-O-sus) is a chronic

inflammatory skin disorder that can affect men, women, or

children, but is most common in women. It usually affects

the vulva (the outer genitalia or sex organ) and the anal 

area. While lichen sclerosus appears predominantly in

postmenopausal women, this skin condition is also known

to develop 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.

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Lichen Sclerosus
Lichen sclerosus of the penis occurs almost exclusively in

uncircumcised men (those who have not had the foreskin

removed). Affected 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 develop scarring.

How Common Is It?

Although definitive data are not available, lichen sclerosus is

considered a rare disorder that can develop in people of all

ages. It usually appears in postmenopausal women and

primarily affects the vulva. It is uncommon for women who

have vulvar lichen sclerosus to 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.

What Are the Symptoms?

Symptoms vary depending on the area affected. Patients

experience 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 often causes no

symptoms at all. If the disease worsens, itching is the most

2
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 that is difficult to relieve. This is

particularly common in children. It is important to note that

the signs of lichen sclerosus in children may sometimes be

confused with those of sexual abuse.

Most men with genital lichen sclerosus have not been

circumcised. They sometimes experience difficulty pulling

back the foreskin and have decreased sensation at the tip of

the penis. Occasionally, erections are painful, and the urethra

(the tube through which urine flows) can become narrow or

obstructed.

What Causes Lichen Sclerosus?

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. Lichen

sclerosus has also been shown to appear at sites of previous

injury or trauma where the skin has already experienced

scarring or damage.

3

Lichen Sclerosus
Is It Contagious?

No, lichen sclerosus is not contagious.

How Is It Diagnosed?

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.

How Is It Treated?

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 skin cancer may

develop within the affected areas.

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.

4
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 (a very strong cortisone cream or

ointment). These creams or ointments may be applied daily

for several weeks, which will be sufficient to stop the itching.

However, long-term but less frequent applications (sometimes as infrequently as twice a week) will be needed to keep

the lesions from reactivating and to help restore the skin’s

normal texture and strength. Treatment does not reverse the

scarring that may have already occurred.

Because prolonged use of ultrapotent corticosteroid creams

and ointments can cause thinning and redness of the skin,

give rise to “stretch marks” around the area of application,

and predispose individuals to vulvar yeast infections, periodic

followup by a doctor is necessary.

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.

Ultrapotent topical corticosteroids are so effective that other

therapies are rarely prescribed. The previous standard therapy

was testosterone cream or ointment, but this has been proven

to produce no more benefit than a placebo (inactive) cream.

5

Lichen Sclerosus
Prolonged use of the testosterone cream or ointment can

cause masculinization (low-pitched voice, increased coarse

facial hairs). Another hormone cream, progesterone, was

previously used to treat the disease, but has also been shown

to be ineffective. Retinoids, or vitamin A-like medications,

may be helpful for patients who cannot tolerate or are not

helped by ultrapotent topical corticosteroids.

Tacrolimus (Protopic*) ointment has been reported to

benefit some patients, but more research is needed to

confirm this. Tacrolimus is a steroid-free ointment; it is 

not a corticosteroid. Tacrolimus has no apparent side

effects other than local irritation in some patients.

There are some early indications that different forms of

ultraviolet light treatments, with or without psoralens 

(pills that intensify the effect of ultraviolet A light), may be

effective and well-tolerated treatments for some patients

with lichen sclerosus on nongenital skin.

Patients who need medication should ask their doctor how

the medication works, what its side effects might be, and why

it is the best treatment for their lichen sclerosus.

For women and girls, surgery to remove the affected skin is

not an acceptable option because lichen sclerosus comes back

after removal. Surgery may be useful for scarring, but only

after lichen sclerosus is controlled with medication.

* Brand names included in this booklet are provided as examples only, and their inclusion does not mean that these products are endorsed by the National Institutes of Health

or any other Government agency. Also, if a particular brand name is not mentioned, this

does not mean or imply that the product is unsatisfactory.

6
Sometimes, people do not respond to the ultrapotent topical

corticosteroid. Other factors, such as low estrogen levels, an

infection, irritation, or allergy to the medication, can keep

symptoms from clearing up. Your doctor may need to treat

these as well. If you feel that you are not improving as you

would expect, talk to your doctor.

Can People With Lichen Sclerosus Have Sexual

Intercourse? 

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 can help restore

normal sexual functioning, 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.

Is Lichen Sclerosus Related to Cancer?

Lichen sclerosus does not cause skin cancer. However, skin

that is scarred by lichen sclerosus is more likely to develop

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 the doctor

every 6 to 12 months, so that the doctor can monitor and

treat any changes that might signal skin cancer.

7

Lichen Sclerosus
What Kind of Doctor Treats Lichen Sclerosus?

Lichen sclerosus is treated by dermatologists (doctors who

treat the skin) and by gynecologists if the female genitalia are

involved. Urologists (a specialist of the urinary or urogenital

tract) and primary health care 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.

Where Can People Find More Information About

Lichen Sclerosus?

■ National Institute of Arthritis and Musculoskeletal

and Skin Diseases

NIAMS/National Institutes of Health

1 AMS Circle

Bethesda, MD 20892–3675

301–495–4484 or

877–22–NIAMS (226–4267) (free of charge)

Fax: 301–718–6366

TTY: 301–565–2966

E-mail: niamsinfo@mail.nih.gov

www.niams.nih.gov

8
NIAMS provides information about various forms of

skin diseases; arthritis and rheumatic diseases; and bone,

muscle, and joint diseases. It distributes patient and

professional education materials and also refers people to

other sources of information. Additional information and

updates can be found on the NIAMS Web site.

■ American Academy of Dermatology

P.O. Box 4014

Schaumburg, IL 60168–4014

847–330–0230 or 

888–462–DERM (3376) (free of charge) 

Fax: 847–330–0050 

www.aad.org

This national professional association for dermatologists

provides patient information and referrals to

dermatologists.

■ American College of Obstetricians and Gynecologists

409 12th Street, SW

P.O. Box 96920

Washington, DC 20090–6920

202-638–5577

Fax: 202-484–5107

www.acog.org

This professional association provides referrals to

gynecologists and has patient education materials.

9

Lichen Sclerosus
■ American Urological Association

1000 Corporate Boulevard

Linthicum, MD 21090

410–689–3700 or

866–RING AUA (746–4282) (free of charge)

Fax: 410–689–3800

www.auanet.org

This professional association provides physician referrals

to urologists through its Web site. Many public libraries

provide access to the World Wide Web. Ask a librarian

for assistance.

■ National Vulvodynia Association (NVA)

P.O. Box 4491

Silver Spring, MD 20914–4491

301–299–0775

Fax: 301–299–3999

www.nva.org

This association provides information and support to

women who have vulvovaginal pain, including pain

caused by lichen sclerosus. The NVA maintains a network

of support groups throughout the United States, as well

as in Canada, England, and Germany. The association

also publishes a newsletter.

Acknowledgments

The NIAMS gratefully acknowledges the assistance of Libby Edwards, M.D., Wake

Forest University School of Medicine, Winston-Salem, NC; Alan Moshell, M.D.,

National Institute of Arthritis and Musculoskeletal and Skin Diseases, NIH; and

Maria Turner, M.D., National Cancer Institute, NIH, in the preparation and review

of this booklet.

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The mission of the National Institute of Arthritis and

Musculoskeletal and Skin Diseases (NIAMS), a part of the

Department of Health and Human Services’ National Institutes of Health (NIH), is to support research into the causes,

treatment, and prevention of arthritis and musculoskeletal and

skin diseases; the training of basic and clinical scientists to

carry out this research; and the dissemination of information

on research progress in these diseases. The National Institute

of Arthritis and Musculoskeletal and Skin Diseases Information Clearinghouse is a public service sponsored by the

NIAMS that provides health information and information

sources. Additional information can be found on the NIAMS

Web site at www.niams.nih.gov.
U.S. Department of Health and Human Services

Public Health Service

National Institutes of Health

National Institute of Arthritis and 

Musculoskeletal and Skin Diseases

NIH Publication No. 04–5585

June 2004