About Lichen Sclerosus (LS)

Lichen sclerosus is a rare skin condition that creates patchy, white skin that’s thinner than normal. Lichen sclerosus may affect skin on any part of your body, but most often involves skin of the vulva, foreskin of the penis or skin around the anus. There is no known cause and anyone can get lichen sclerosus, but postmenopausal women are at highest risk, leading to speculation hormones can act as triggers. An overactive immune system can also be a culprit. Most women suffering from LS also suffer from other auto-immune diseases. Previous skin damage at a particular site on your skin may increase the likelihood of lichen sclerosus at that location. Although LS may involve skin around your genitals, it isn’t contagious and cannot spread through sexual intercourse. Lichen sclerosus occurs most often in postmenopausal women, but it also occurs in men and children. In women, lichen sclerosus usually involves the vulva. In boys and men, uncircumcised males are most at risk, because the condition generally affects the foreskin. In children, the signs and symptoms may improve at puberty. LS can be debilitating and painful, and if left untreated, it may lead to other complications, including extensive scarring and increased risk for skin cancer. Have your symptoms checked by a doctor, a biopsy will be taken to confirm diagnosis. Most women with LS are treated by both an Ob/Gyn as well as a dermatologist. There is no cure, but there are many ways to keep outbreaks to minimum and to help healing the damaged skin. Please check our blogs and forums for latest information.

Symptoms:

  • Itching (pruritus), which can be severe
  • Discomfort, which is generally greater if LS appears on or around your genital or anal areas
  • Smooth white spots on your skin that may grow into blotchy, wrinkled patches
  • Tenderness of the affected areas of your skin
  • Easy bruising or tearing
  • In severe cases, bleeding, blistering or ulcerated lesions
  • In women, the uncomfortable itching and scarring that accompanies severe LS may narrow the vaginal opening and affect the ability or desire to have sexual intercourse. In some cases, the blistering may create extremely sensitive skin to the point that any pressure on the area is unbearable.

Treatment:

If your LS isn’t in your genital area, you may not need treatment for it, especially if you’re not having symptoms. In fact, many cases disappear without any treatment. But if you have LS on or around your genitals or anus, or have a more advanced case on other parts of your body, you need to treat it. Usually effective treatment involves both prescription ointments as well as supportive therapies.

  • The most commonly prescribed treatment for lichen sclerosus is corticosteroid ointments or creams. These medications are usually quite effective and help stop the itching right away. Doctors generally recommend putting cortisone creams or ointments on the affected patches of skin every day for several weeks. After that, you’ll likely need to continue applying corticosteroids a couple of times a week to prevent a recurrence of lichen sclerosus. Your doctor will monitor you for side effects associated with prolonged use of topical corticosteroids, such as thinning of the skin. Many women look for alternative treatments as corticosteroids merely improve symptoms like itching but do not alone help the skin heal. Also, the skin thinning effects of the drugs mean most women look for other solutions after initial couple of months of use.
  • Instead of corticosteroids, your doctor might opt for immune-modulating medications, such as tacrolimus (Protopic) and pimecrolimus (Elidel). These are strong medications and can be very effective, and do not have the skin thinning side effect of corticosteroids. Never use both corticosteroids and immune-modulators at the same time. Unfortunately some women report these medications are too strong for them to use, especially if the skin is very damaged. They can cause intense burning sensations that sometimes disappear after a few days of use, but sometimes persist for longer and can be intolerable to some women.
  • Prescription sex hormones. Many women report great results in healing the skin using E&T therapy (estrogen & testosterone). Many times the hormone creams are used together with immune-modulators for best results.
  • Ultraviolet light treatment, for nongenital areas only!
  • For men with lichen sclerosus on the foreskin, removal of the foreskin (circumcision) is a common treatment in cases resistant to other therapies or more advanced cases. Surgery generally isn’t recommended for women with lichen sclerosus because the condition may just come back after surgery.

Most effective treatments include a combination of medical treatments as well as natural therapies. Avoiding triggers is also important. LS can seem insurmountable but with persistence and home-care it can be managed. Often symptoms can disappear completely for long periods of time if a constant regimen of care is maintained. Scarring can also heal over time to improve quality of life. Living with LS is very much about figuring out what are your personal triggers, and what are the treatments that work for you. Effective treatments are usually a combination of medications to control the initial flare-up and natural oils and other natural therapies together with the right nutrition and foods to minimize number of flareups and keep the skin as healthy as possible.

Triggers can be very personalized, but may include:

  • certain foods, most commonly wheat and milk
  • harsh chemicals in soaps and detergents (recommendation is not to use soap directly on the affected skin)

Common home treatments:

  • baths, especially using epsom salts or oatmeal soaks (Aveeno)
  • only wear clean cotton underwear, no man-made fibers
  • oils, such as emu oil, neem oil, sea buckthorn oil and coconut oil can help maintain softness and lubrication
  • don’t wear tight clothing; sleep naked
  • make sure you get enough vitamin D and omega fish oils in your diet
  • aloe vera