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Lichen Sclerosus

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7 Feb 2025
jfecher1Chronic Illness, Cancer, & Long-Term Health Conditions Articleschronic condition, connection, education, empower, Empowering Intimacy, female, illness, Intimacy, LGBTQIA, lichen sclerosus, male, painful genitals, sexual dysfunction, sexual health, sexual wellness

Lichen sclerosus is a rare genital based skin condition that is itchy, painful, and changes the physical makeup of the vagina, labia, and anus. This does not only affect women, but also men and the head of the penis. This can create painful skin, touch, or sexual activities including intercourse. Lichen sclerosus is a chronic disease that worsens over time. There are treatments designed to slow the progression of this disease.

“Lichen sclerosus may go undiagnosed for years because women are often too embarrassed to tell their doctor about their symptoms,” says Dr. Amanda Zubek, a Yale Medicine dermatologist. “When caught early, prompt treatment can prevent a lifetime of debilitating itch and painful genital scarring.”

About Lichen Sclerosus

This chronic inflammatory skin disease affects five to ten times more women than men (Yale Med) and can affect humans of any age. The sores and lesions caused are small, pink or white bumps. Over time, they can become rough, patchy, wrinkly and white – resembling tissue paper. These patches are itchy and uncomfortable, and often painful on very fragile skin. Itching these patches can result in bleeding and severe skin irritation, which can then lead to scarring. There is also a slight risk increase for developing cancer of the penis or vulva.  

In severe cases, lichen sclerosus can spread around the body to the thighs, buttocks, upper body and torse, wrists, and even the mouth. Close to one-fourth of patients with a lichen sclerosus diagnosis will have some type of body spread of the disease.

Over time, Lichen Sclerosus also “eats away” at the labia reshaping and reforming the entire physical look of the vulva. This can be very defeating and cause mental health issues for many women.  

Causes for Lichen Sclerosus

The causes of this disease are unknown, but many researchers and studies have been done and shown links to genetic factors, environmental factors, hormonal factors, and immune-related factors. Other evidence shows that Lichen Sclerosus could be triggered in many by trauma or injury to the affected area. Other studies have shown a direct link to many types of autoimmune conditions when the body begins to attack itself and healthy cells. Hormone levels, especially estrogen, have been linked to the development of the disease as well, but these studies are on-going, and details still limited.

Treatments for Lichen Sclerosus

There is no cure for Lichen Sclerosus but there are some progression delays available. They are:

  • Topical Steroids: Prescription topical steroid ointments that are applied to the affected skin can reduce inflammation and itching. These are usually the first treatment option for lichen sclerosus. The most prescribed topical steroid is cobetasol propionate.
  • Topical Calcineurin Inhibitors: By suppressing the response of the immune system, these creams and ointments can reduce skin inflammation.
  • Topical and Oral Retinoids: A class of medications derived from vitamin A called retinoids are sometimes used to treat lichen sclerosus.
  • Phototherapy: Exposure of affected areas of skin to certain wavelengths of ultraviolet light can reduce inflammation and itching.
  • Oral Immunosuppressants: This class of medications, which include methotrexate and mycophenolate mofetil, suppresses the immune system and reduces inflammation.

Surgery may be recommended as a treatment for some patients. Treatment for uncircumcised men with lichen sclerosus, for instance, may include circumcision. Surgery may also benefit a woman whose vulva has become scarred and painful.

“A long-term maintenance treatment regimen is very important, and not just to prevent or treat symptom recurrence. Treatment to maintain normal skin color and texture reduces scarring and may prevent progression to skin cancer,” says Yale Medicine dermatologist Dr. Alicia Little, MD, PhD.

Prognosis of Lichen Sclerosus

This life-long condition will continue to progress if left untreated, and will cause serious, debilitating symptoms. With treatment and regular care, progression can be halted and symptoms managed to help to relieve pain and discomfort. For some, treatment might put them into a “remission,” however relapses are common and can happen at any time. Those people with Lichen Sclerosus should have regular medical visits to stay on top of this condition.

If you are struggling with vulvar or penile pink, red, or white patchy areas that are uncomfortable, do not hesitate to reach out to your medical care team to begin investigation and testing to prove or disprove the diagnosis.

Citations:

National Institutes of Health and Human Services

Gynecology Association of America

Yale Medicine

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Hi! I'm Jen- an inclusive sexual wellness educator of 20+ years with a couple of degrees- one in Education & another in Business, LOTS of experience in the realm of adult sexuality, intimacy, sexual dysfunction, product and device knowledge, & even more experience being a chronically ill, medically chaotic human- who understands these very setbacks, issues, and worries. I look forward to working with you & your participants, or helping you through your dysfunction struggles! Learn more about me on the About Us page.

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