Lichen sclerosus of the vulva is a long-term, noncancerous inflammatory skin condition. It causes the vulvar skin to become thin, pale, and fragile, often leading to long-standing itching and discomfort. Lichen sclerosus most commonly affects the skin of the vulva and the area around the anus, and it can occur at any age, although it is most common in postmenopausal women and also has a smaller peak in prepubertal girls.
Lichen sclerosus is not cancer and is not contagious. However, when it is not treated or not well controlled, it carries a small but real risk of changing over time into a precancerous condition called differentiated vulvar intraepithelial neoplasia (dVIN), which can in turn progress to squamous cell carcinoma of the vulva. For this reason, lichen sclerosus is treated and monitored over the long term.
This article will help you understand what this diagnosis means on your pathology report, what each term means, and why it matters for your care.
What causes lichen sclerosus?
The exact cause of lichen sclerosus is not known. It is not caused by an infection and is not sexually transmitted. Current understanding suggests that several factors contribute:
- Autoimmune activity — Lichen sclerosus is thought to involve the immune system mistakenly attacking the skin. Many patients with lichen sclerosus also have, or later develop, another autoimmune condition such as thyroid disease, vitiligo, pernicious anemia, or alopecia areata.
- Genetic predisposition — Lichen sclerosus sometimes runs in families, which suggests that inherited factors play a role in who develops the condition.
- Hormonal factors — The condition is most common in postmenopausal women and in prepubertal girls, two times of life when estrogen levels are low. This pattern suggests that hormonal factors may contribute, although the relationship is not fully understood.
- Local skin factors — Previous injury, friction, or irritation of the vulvar skin may trigger or worsen lichen sclerosus in some people.
What are the symptoms?
The symptoms of lichen sclerosus can range from mild to severe. Some people have no symptoms at all, and the condition is discovered during an examination performed for another reason. When symptoms are present, they commonly include:
- Itching — Persistent and sometimes intense itching of the vulva is the most common symptom and is often worse at night.
- Soreness, burning, or pain — The affected skin may feel raw, tender, or painful, particularly with friction from clothing, during urination, or during sexual activity.
- Visible skin changes — The affected skin often appears white, thinned, and wrinkled, sometimes described as looking like cigarette paper or parchment. The changes may form a figure-of-eight pattern around the vulva and anus.
- Easy bruising, tearing, or splitting — The fragile skin may bruise, develop small tears (fissures), or bleed with minor friction.
- Scarring and changes in shape — Over time, untreated lichen sclerosus can cause the normal structures of the vulva to scar and fuse. This may include shrinkage or loss of the inner lips (labia minora), narrowing of the vaginal opening, and burying of the clitoris under scarred skin.
Because lichen sclerosus can resemble other skin conditions, and because some skin changes can be a sign of a precancerous condition or cancer, any new lump, thickened area, sore that does not heal, or area that does not respond to treatment should be examined and may be sampled with a biopsy.
How is the diagnosis made?
Lichen sclerosus is often first suspected during a physical examination because of its characteristic appearance. In many cases, especially when the appearance is typical and there are no concerning features, the diagnosis can be made on the basis of the examination alone. When the diagnosis is uncertain, or when there are features that raise concern for a precancerous condition or cancer (such as thickened areas, a lump, an ulcer, or skin that does not respond to treatment), a biopsy is performed.
During a biopsy, a small sample of the affected skin is removed and sent to a laboratory, where it is examined under the microscope by a pathologist. The biopsy confirms the diagnosis of lichen sclerosus and, importantly, allows the pathologist to check for dVIN or squamous cell carcinoma in the same sample.
What does lichen sclerosus look like under the microscope?
When a biopsy of lichen sclerosus is examined under the microscope, the pathologist looks for a combination of characteristic changes in the skin. The vulva is covered by skin, and the top layer of the skin is called the epidermis, while the supporting layer beneath it is called the dermis. The typical features of lichen sclerosus include:
- Thinning of the epidermis — The top layer of the skin often becomes thin, with loss of the normal downward extensions (rete ridges) that anchor the epidermis to the dermis.
- Thickened surface keratin — Despite the thinning of the epidermis itself, the outermost keratin layer is often thickened, a change called hyperkeratosis.
- Damage to the basal layer — The cells at the base of the epidermis often show damage and degeneration.
- A pale band in the upper dermis — A characteristic finding is a band of pale, homogenized (hyalinized) tissue in the upper dermis, just beneath the epidermis. This altered collagen is one of the most recognizable features of lichen sclerosus.
- A band of inflammation — Beneath the pale band, the pathologist usually sees a band of inflammatory cells, mostly lymphocytes, a type of immune cell typical of chronic inflammation.
While examining the biopsy, the pathologist also looks for any abnormal squamous cells that might indicate dVIN or an early cancer, since these can develop in skin affected by lichen sclerosus.
Is lichen sclerosus a precancerous condition?
Lichen sclerosus is not itself a precancerous condition, and most people with lichen sclerosus never develop cancer. However, lichen sclerosus is associated with a small increase in the risk of developing squamous cell carcinoma of the vulva over time. The lifetime risk is estimated at 2-6%, compared with less than 1% in the general population. When cancer does develop, it usually does so by passing through the precancerous condition dVIN.
Several factors are associated with a higher risk of progression:
- Untreated or poorly controlled disease — Lichen sclerosus that is not treated consistently is associated with a higher risk of progression. Treatment is one of the main reasons the cancer risk can be reduced.
- Concurrent dVIN — When dVIN is already present alongside lichen sclerosus, the risk of cancer is meaningfully higher.
- Older age — Older patients, particularly those diagnosed at age 70 or older, have a higher risk of progression.
- Long-standing disease — Lichen sclerosus that has been present for many years, especially with ongoing scarring and skin changes, is associated with a higher risk.
Because the risk of cancer can be lowered with treatment and monitoring, ongoing care is recommended for everyone with lichen sclerosus, including those who currently have no symptoms.
What happens after this diagnosis?
Lichen sclerosus is a long-term condition that can be controlled but not permanently cured. The goals of treatment are to relieve symptoms, prevent scarring and architectural changes, and lower the risk of progression to cancer. The discussion between you and your doctor about next steps depends on the severity of your symptoms, the extent of skin changes, and the findings on your pathology report.
Options that the team may discuss include:
- High-potency topical corticosteroids — Strong corticosteroid ointments, such as clobetasol propionate, are the standard first treatment for lichen sclerosus. They are typically applied daily for an initial period of several weeks, then less frequently for long-term maintenance. Topical corticosteroids relieve symptoms, can improve skin appearance, and help reduce the risk of scarring and cancer.
- Ongoing maintenance treatment — Because lichen sclerosus is a long-term condition, treatment usually continues at a reduced frequency even after symptoms improve. Maintenance treatment helps keep the disease under control and lowers the chance of flares and complications.
- Emollients and skin care — Gentle moisturizers and avoiding irritants (such as harsh soaps, tight clothing, and friction) can help protect fragile skin and reduce discomfort.
- Topical calcineurin inhibitors — Medications such as tacrolimus or pimecrolimus may be considered as a second-line option for patients who do not respond well to corticosteroids or who need an alternative.
- Surgery — Surgery is not used to treat lichen sclerosus itself, but it may be discussed to correct scarring that interferes with urination or sexual function, or to remove an area of dVIN or cancer if one is found.
- Long-term monitoring — Because of the small risk of cancer, regular follow-up examinations are an important part of care. Your doctor will periodically examine the vulvar skin and recommend a biopsy of any area that appears suspicious or does not respond to treatment.
With consistent treatment and monitoring, most people with lichen sclerosus can control their symptoms and reduce their risk of complications. Long-term follow-up with a clinician experienced in vulvar conditions is recommended.
Questions to ask your doctor
- Was the diagnosis of lichen sclerosus confirmed by a biopsy, or made on examination alone?
- Did my biopsy show any signs of dVIN or cancer in addition to lichen sclerosus?
- How severe is my lichen sclerosus, and how much scarring or skin change is already present?
- What treatment do you recommend, and how should I apply it?
- How long will I need to continue treatment, and what does maintenance treatment involve?
- What skin care practices or irritants should I follow or avoid?
- What is my personal risk of developing vulvar cancer, and how can treatment lower that risk?
- How often will I need follow-up examinations?
- What changes in my skin or symptoms should prompt me to contact you between visits?
- Should I be checked for other autoimmune conditions, such as thyroid disease?
- Could lichen sclerosus affect my sexual function or urination, and what can be done if it does?
- Should I see a specialist in vulvar conditions for ongoing care?
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