What is lichen sclerosus?
Lichen sclerosus is a long-term skin condition. It causes the skin to become thin, white, and wrinkly. Lichen sclerosus is most common in women who have gone through menopause. It can also happen in men and children, and women who have not gone through menopause.
Skin has several layers. The outermost layer is the epidermis. Under this is the dermis. The dermis contains blood vessels, nerve endings, hair roots, and sweat glands. With lichen sclerosus, the epidermis may become thin. Inflammatory cells invade the dermis. It may swell and have broken blood vessels. Stretchy fibers in the skin (elastic and collagen) may break. All of this can lead to symptoms such as itching, pain, and blisters.
It usually affects the genital and anal areas. Vulvar lichen sclerosus is a common form of the condition that affects a woman’s external genital areas. Less often, it can affect other parts of the body. These may include the neck, shoulder, breast, thighs, or mouth.
What causes lichen sclerosus?
Researchers are still working to understand what causes lichen sclerosus. It runs in families, so researchers think that certain genes may play a role. It does not appear to be contagious, so you can’t catch it from another person. Some factors that may lead to the condition are:
- Problems with your immune system
- Hormonal imbalances, especially with estrogen
- Previous skin damage
Who is at risk for lichen sclerosus?
You may have an increased risk for lichen sclerosus if you have an autoimmune disease, such as:
- Autoimmune-related thyroid disease
- Autoimmune-related anemia
- Type I diabetes
- Alopecia areata
Other factors that can increase your risk include:
- A history of sexual abuse
- A history of the condition in your family
Circumcision greatly lowers the risk of lichen sclerosus in men.
What are the symptoms of lichen sclerosus?
Lichen sclerosus causes skin changes. Very early on, you might not have any symptoms at all. A little later, small white spots might appear on your skin. Later, these spots might grow into larger, thin and wrinkled patches extending from the labia to the anus.
Common symptoms might include:
- Vulvar itching (very common)
- Anal itching, bleeding, or pain
- Painful sexual intercourse
- Skin bruising and tearing
- Easy bleeding from minor rubbing of the skin
- Pain or bleeding with defecation
- Difficulty urinating or pain with urination
- Painful erections (in men)
Lichen sclerosus doesn’t affect the inner reproductive organs, such as the vagina or uterus.
How is lichen sclerosus diagnosed?
Your healthcare provider will ask about your medical history and symptoms. You will also have a physical exam. This will include a close physical exam of the affected areas.
Often, this is enough for a diagnosis. In some cases, you may have a skin biopsy. For a biopsy, small pieces of skin are removed and checked in a lab.In some cases, you may need other tests to make sure you don’t have other health conditions. These may include lichen planus, low estrogen levels, or vitiligo. Your healthcare provider may also want tests to check you for certain conditions, like autoimmune thyroid problems. The area of skin may also be checked to make sure it isn’t infected.
How is lichen sclerosus treated?
You may be treated by a primary healthcare provider, a skin healthcare provider, or a healthcare provider specializing in the reproductive organs.
Often, patches outside the genital and anal area may go away with time. Your healthcare provider may choose to watch these areas before beginning treatment. Symptoms in the genital and anal region don’t usually get better without treatment.
Treatment is done to relieve symptoms and keep the lichen sclerosus from getting worse. The treatment often starts with steroid ointment. This reduces pain, itching, and inflammation. When used regularly, this helps manage symptoms for most people. Other possible treatments include:
- Steroid injections, especially if steroid ointment doesn’t work well
- Tricyclic antidepressants at low doses, which may decrease vulvar pain
- Other medicines such as acitretin (except in women of childbearing age because of risk of severe birth defects) or tacrolimus, if other treatments have failed
- Ultraviolet light treatment, if other treatments fail
For men, removal of the foreskin (circumcision) is often a successful treatment. In women, surgery is often not a preferred treatment because lichen sclerosus usually comes back.
These treatments usually reduce most of the symptoms and keep the condition from getting worse. You will likely need to use medicine on a regular, long-term basis. If untreated, the condition tends to get worse over time.
What are possible complications of lichen sclerosus?
Vulvar lichen sclerosus may slightly increase the risk of squamous cell skin cancer in women. Men with lichen sclerosus on the penis may also have an increased risk. (Lichen sclerosus on other areas of your body does not seem to increase your risk of cancer.) Your healthcare provider may need to check your skin on a regular basis. You may need a biopsy of any abnormal areas to check for skin cancer. You should also check yourself regularly for lumps or sores that don’t heal.
Untreated advanced lichen sclerosus may permanently change the look of your genitals. The opening of the vagina may narrow. The outer and inner lips of the vulva may stick together. You may need surgery to correct these changes. In men, the foreskin may scar and shrink. This leads to trouble pulling back the foreskin. In both men and women, the condition may cause pain with intercourse.
Treatments for lichen sclerosus can also cause complications. For example, using steroid ointment over a long period of time may cause genital yeast infections.
Coping with lichen sclerosus
Practicing good hygiene may help you reduce some of the symptoms of lichen sclerosus. Your healthcare provider may advise that you:
- Not scratch the area
- Not wear pantyhose (wear thigh-high stockings instead)
- Wear cotton underwear instead of synthetic underwear
- Wear loose-fitting pants or skirts instead of tight-fitting pants
- Not use scented soaps, detergents, or bubble baths
- Not apply soap directly to your genitals
- Use your fingertips and not washcloths for washing the vulva
- Pat the vulva dry after washing, and don’t rub
- Not use feminine sprays or douches
You can support from the Association for Lichen Sclerosus and Vulval Health (www.lichensclerosus.org).
Key points about lichen sclerosus
- Lichen sclerosus is a long-term skin condition that mostly affects the genital and anal areas. It causes your affected skin to become thin, white, and wrinkly. It is more common in women who have gone through menopause. Vulvar lichen sclerosus is a common form of the disease.
- Lichen sclerosus results from inflammation and other skin changes in the affected area.
- Common symptoms include itching, irritation, and pain with intercourse.
- Your healthcare provider can confirm the condition with a medical history, exam, and skin biopsy.
- Most people with will need long-term treatment to manage their symptoms.
- Lichen sclerosus increases your risk of squamous cell skin cancer. You and your healthcare provider should check for signs of this.
- Good hygiene may also help reduce some symptoms of lichen sclerosus.
Tips to help you get the most from a visit to your healthcare provider:
- Know the reason for your visit and what you want to happen.
- Before your visit, write down questions you want answered.
- Bring someone with you to help you ask questions and remember what your provider tells you.
- At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.
- Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.
- Ask if your condition can be treated in other ways.
- Know why a test or procedure is recommended and what the results could mean.
- Know what to expect if you do not take the medicine or have the test or procedure.
- If you have a follow-up appointment, write down the date, time, and purpose for that visit.
- Know how you can contact your provider if you have questions.