When you may need a provider
- If you think you have lichen sclerosus, you should see a doctor to get diagnosed and treated. If treatment is started early, there is a lower risk of scarring and long-term consequences.
- To relieve symptoms, use a lubricant in the area to help prevent pain with sexual activity.
Go to the ER if you have any of the following symptoms:
- Unable to urinate
- Severe pain that interferes with sleep and daily activities
What is lichen sclerosus?
Lichen sclerosus is an ongoing (chronic) skin condition. It causes white patches with surrounding redness and bruising (purple color around the white patches). Most of the time, these patches are on the anus or genitals (penis or vulva—the outer part of the female genitals). It’s more common in girls who haven’t reached puberty yet and in postmenopausal women.
The exact cause of lichen sclerosus is unknown but genetics and hormones may play a part.
Lichen sclerosus patches are usually treated with a prescription ointment or cream, or with ultraviolet (UV) light. In severe cases, an oral medication may be used.
What does lichen sclerosus look like?
Lichen sclerosus patches on the genital and anal areas are white, shiny, and scar-like. There is usually redness and bruising surrounding the white area. They’re usually itchy and oftentimes painful.
Females are more likely to get lichen sclerosus than males, usually before puberty or after menopause. The patches can make urinating or bowel movements hurt. In many cases, the symptoms are confused with a urinary infection or constipation.
Lichen sclerosus can also make sex painful. If you don’t treat it, the patches can lead to scarring and loss of normal genital anatomy. That scarring can lead to loss of the labia minora as it becomes fused to the labia majora (the small skin folds on the sides of the vagina) or scarring of the clitoris.
Males can get lesions of lichen sclerosus on any part of the genitals as well. On an uncircumcised penis, the patches can tighten the foreskin. This makes the foreskin hard to roll back, or hard to move back to its normal position after having been rolled back. Both of these problems can be painful or make it hard to urinate.
Sometimes lichen sclerosus causes patches on other parts of the body (known as extragenital lichen sclerosus), like the torso or arms. These aren’t usually itchy.
Many times patients are embarrassed and frustrated with the symptoms and by having a rash in the genitals and feel hopeless. I like to reassure the patient that there are treatments that can lead to significant improvement and symptoms can be relieved. —Dr. Lauren Levy
- White, scar-like patches with surrounding redness and bruising.
- Patches are mainly on the genital area or anus.
- Pain or itch in the affected area.
- Pain with urinating or bowel movements.
- Women might feel pain with sex.
- Uncircumcised men might have a hard time handling the foreskin.
What is the best treatment for lichen sclerosus?
Make an appointment to see your doctor to get the correct diagnosis and treatment. They may send you to a dermatologist (a doctor who specializes in diseases of the skin). They may examine your entire body for more bumps and patches and take a biopsy (a small sample of skin) to confirm your diagnosis.
- Try not to scratch the bumps or patches. This can make them more irritated.
- The main treatment is using a prescription steroid cream or ointment such as clobetasol. You apply it directly to the patches every day, usually for several months. As your skin heals, you can use the creams less often. There is a small risk that steroid cream can thin your skin if you use it for too long but this rarely happens in people with lichen sclerosus.
- Alternatively, there are non-steroid medicated ointments and creams you can try, such as pimecrolimus or tacrolimus. These are also put directly on the patches. Sometimes, they can irritate your skin a little. But there’s no risk of your skin thinning.
- If neither of the creams work, your doctor may suggest phototherapy, where your skin is exposed to ultraviolet (UV) light.
- In severe cases that are not responsive to other treatments, oral immunomodulatory medications may be used, such as hydroxychloroquine or methotrexate. These suppress the immune system to prevent the patches from occurring.
- If you have problems with the foreskin of your penis because of lichen sclerosus, a urologist might have to circumcise your penis. As with any surgery, there is a risk of bleeding, infection, and scarring, but the risks are minimal.
Make sure you have regular follow-up with your physician because there is a small chance that cancer (squamous cell carcinoma) can develop in lesions of lichen sclerosus. Also make sure you tell your doctor if you are having symptoms of painful sex. Many women are very embarrassed by this symptom and fail to bring it up. —Dr. Levy
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What happens if lichen sclerosus is left untreated?
Not treating lichen sclerosus can cause a lot of problems. As the condition gets worse, it can cause severe pain during sex or difficulty urinating or defecating. Your normal genital anatomy may become distorted from the scarring.
Having itchy or painful patches on your genitals can also harm your mental health.
If you don't treat lichen sclerosus, it will continue to itch. Scratching it can lead to bacterial skin infections. It can also lead to the development of squamous cell carcinoma—a type of skin cancer.
One of the most common misconceptions is that it is contagious—it is not contagious. —Dr. Levy
Is lichen sclerosus an autoimmune disease?
It is not clear what exactly causes lichen sclerosus. But most experts agree that it is a type of autoimmune disease. Your immune system creates antibodies (small proteins that fight infections). In lichen sclerosus, these proteins attack healthy tissue and cause the patches.
There is also likely a genetic factor to lichen sclerosus. That is, you might be carrying a certain gene that doesn’t show up until you're exposed to something that triggers the condition.
Lichen sclerosus can get better with treatment, but that can take several months. It can also recur (flare up again), so your doctor should see you at regular intervals during treatment and even after your symptoms go away. Sticking with your treatment plan can lower your chances of having a recurrence and prevent scarring.
If a woman or man has lichen sclerosus on the vulva or penis, there is a very small risk for skin cancer, squamous cell carcinoma. This looks like a non-healing cut that bleeds easily or a painful bump that may ooze. Regular exams by a dermatologist and or gynecologist or urologist should be performed to screen for the development of cancer, but this is very rare.
Also, because early treatment can reduce the risk of irreversible scarring from the condition, your doctor may schedule regular follow-up visits to catch and treat it early.
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