OVERVIEW

What is lichen sclerosus?

Lichen sclerosus, previously known as lichen sclerosus et atrophicus, no longer uses the term "atrophicus" because thickened and hyperplastic areas are often present. It is a type of skin disease that commonly occurs in the genital area. It typically presents as porcelain-white papules or plaques on the vulva, which may later develop into white or gray-white atrophic patches with a "parchment-like" appearance, often accompanied by itching.

The first-line treatment is potent topical corticosteroids such as clobetasol propionate ointment. Other options include topical calcineurin inhibitors, oral acitretin, and phototherapy. Untreated cases may lead to disabling scarring^[1].

Is lichen sclerosus common?

No, it is uncommon. Reported incidence in women ranges from 1/70 to 1/1000, with a malignant transformation rate of up to 2/100,000, increasing with age. In women over 75, the risk rises to 25/100,000^[2].

Are lichen sclerosus, guttate morphea, atrophic lichen planus, and vitiligo the same condition?

No.

1. Guttate morphea: Shares sclerotic and atrophic lesions with lichen sclerosus but features smaller, more numerous, and scattered lesions.
2. Atrophic lichen planus: Pathologically similar to lichen sclerosus, but lacks prominent papules, causes intense itching, presents with dark purplish-brown rashes, and affects non-genital areas.
3. Vitiligo: Both involve white skin lesions, but vitiligo only shows depigmented patches with normal skin texture—no atrophy or sclerosis.

Which department should I visit for lichen sclerosus?

Dermatology is the first choice. For genital involvement, gynecology (women) or andrology (men) may also be appropriate.

SYMPTOMS

What are the common manifestations of lichen sclerosus?

Over 90% of patients seek medical attention due to unbearable vulvar itching, while the remaining 10% may have no symptoms at all and are usually discovered incidentally or during gynecological examinations^[2].

The typical symptom is persistent itching, which is particularly severe at night and may even disrupt sleep.

Women may visibly observe porcelain-white or ivory-colored papules, plaques, and atrophic patches, most commonly on the labia majora, labia minora, clitoris, and around the anus, forming a characteristic "dumbbell" appearance. Occasionally, lesions may also appear on the inner thighs or oral mucosa. The vulvar skin is fragile, and the intense itching often leads to scratching, which can result in secondary inflammatory infections, manifesting as purpura, erosions, and fissures. Some patients may also experience vulvar pain, dysuria, painful urination, and discomfort during sexual intercourse, leading to dyspareunia.

Men may also develop lesions, typically on the glans, urethral opening, coronal sulcus, or inner foreskin, and occasionally on the penis, presenting as dry, sclerotic balanitis with shriveled, contracted foreskin and glans.

CAUSES

What are the common causes of lichen sclerosus?

The exact cause is currently unclear, but it may be related to genetic predisposition, autoimmune factors, infections, metabolic disorders, or low endogenous sex hormone levels.

1. Autoimmune factors: It may be associated with humoral immune responses. Autoimmune diseases are relatively common in patients with lichen sclerosus, suggesting that the condition may involve autoimmune mechanisms and immune regulation abnormalities.
2. Genetic predisposition: Most cases are sporadic, but familial occurrences have been reported. Trauma or injury may trigger symptoms in genetically predisposed individuals.
3. Infections: Certain infectious agents, such as Borrelia burgdorferi and human papillomavirus, may contribute to its development.
4. Metabolic disorders or low endogenous sex hormone levels: The incidence of lichen sclerosus is highest in women during low-estrogen physiological states. Some reports suggest elevated free testosterone levels in female patients^[5], though this has not been confirmed.

Who is most commonly affected by lichen sclerosus?

It is more common in women, with an incidence rate of approximately 3%^[3], typically postmenopausal women (around age 53), followed by prepubescent girls (around age 8)^[2].

Is lichen sclerosus contagious?

No.

Lichen sclerosus is not caused by bacterial or viral infections and is therefore not contagious.

Is lichen sclerosus hereditary?

There are familial cases, but it has not been proven to be definitively hereditary.

Can lichen sclerosus become malignant?

Vulvar lichen sclerosus slightly increases the risk of vulvar squamous cell carcinoma in women, though the estimated risk is less than 5%.

DIAGNOSIS

How to Diagnose Lichen Sclerosus? What Tests Are Needed?

Diagnosing lichen sclerosus is not difficult. Doctors can confirm it by reviewing the patient's medical history, examining skin manifestations, and conducting necessary pathological tests.

If the patient's clinical symptoms are typical—such as porcelain-white papules, plaques, or atrophic patches in common affected areas—an experienced doctor can make a direct diagnosis without a biopsy.

However, if symptoms are atypical, require differentiation from other conditions, or raise concerns about potential malignancy, the doctor may perform a local anesthetic procedure to take a small skin sample from the affected area for biopsy confirmation.

Female patients with vulvar edema or epidermal shedding may also need routine vaginal secretion tests. If the doctor suspects an immune system disorder, additional immune-related tests might be required.

In short, the specific tests needed depend on the individual case.

TREATMENT

How to treat lichen sclerosus?

The main treatment is topical application of corticosteroids. If medication is ineffective or the condition is severe, physical therapy or surgery may be considered, along with long-term use of moisturizing lubricants for maintenance therapy.

1. General treatment: Long-term use of cod liver oil ointment or vitamin E cream is often recommended to moisturize and lubricate, alleviating dryness in the vulvar area.
2. Medication: Topical corticosteroid ointments or creams, such as 0.05% clobetasol propionate, can relieve symptoms in over 50% of patients. Calcineurin inhibitors are second-line treatments and do not cause steroid-induced skin atrophy, such as 0.1% tacrolimus ointment or 1% pimecrolimus. Intralesional corticosteroid injections or oral retinoids are also options.
3. Physical therapy: If medication fails or the condition is severe, UVA1 phototherapy, photodynamic therapy, or focused ultrasound may be used. A biopsy is required before ultrasound therapy to rule out intraepithelial neoplasia or malignancy.
4. Surgery: If medication and ultrasound therapy are ineffective or cancer is suspected, surgical excision may be performed, followed by postoperative medication^[1][2].

Can lichen sclerosus be completely cured?

Improvement or remission (not a cure) is possible and somewhat age-dependent. Some prepubescent patients may experience spontaneous remission, but most require active intervention. Lifelong medication is often needed to maintain treatment effects even after symptom relief.

Does lichen sclerosus require hospitalization?

Hospitalization may be necessary if the condition is severe, medication is ineffective, or surgery is required.

What are the common side effects of lichen sclerosus medications?

Corticosteroids used for lichen sclerosus may cause folliculitis, telangiectasia, or vulvar atrophy and should not be used long-term. Side effects usually subside after discontinuation or switching medications.

Tacrolimus ointment does not cause steroid-related side effects but may cause a burning sensation, which can be mitigated with barrier protectants. The FDA has issued a black-box warning for this drug class, though no definitive link to malignancy has been established. Topical treatment duration should be limited to 16–24 weeks before reevaluation^[1-2].

What are the common risks of surgery for lichen sclerosus?

Patients with coagulation disorders or poor wound healing may face postoperative bleeding risks. Infections are rare with proper wound care, and antibiotics are usually unnecessary after biopsy. Scarring may occur post-surgery.

How long is the recovery after lichen sclerosus surgery?

Recovery varies by individual.

Surgical options include circumcision for phimosis, urethral reconstruction or dilation for urethral strictures, perineal reconstruction for vaginal stenosis, perineal release for recurrent labial or clitoral adhesions, and cystotomy for clitoral adhesions. Recovery time depends on the procedure and individual circumstances.

DIET & LIFESTYLE

What should patients with lichen sclerosus pay attention to in daily life?

• Avoid local mechanical damage in daily life, do not use hard bicycle seats, and avoid wearing tight clothing.
• Urine can worsen the condition. After urination, dry the urine thoroughly and try to avoid contact between the affected skin and urine. Moisturizer can be applied after urination or before and after swimming^[1].

What are the postoperative precautions and care for lichen sclerosus surgery?

After surgical treatment or skin biopsy, keep the wound and surgical dressings clean and dry to avoid infection. Change the dressing regularly postoperatively, usually every other day. If the surgical dressing becomes wet or contaminated, replace it promptly.

During dressing changes, monitor the wound for bleeding, infection, new lesions, and healing progress.

Does lichen sclerosus require follow-up? How should it be done?

Due to its chronic nature, long-term follow-up is recommended.

• For prepubertal patients, monthly follow-ups are advised.
• For adult patients on oral medication, reassessment is recommended after a 3-month remission induction period.
• During the maintenance phase, follow-ups should be scheduled at 3, 6, and 12 months, then every 6–12 months based on the patient's condition^[1].

Adult women have an increased risk of malignancy, so self-examination for signs of malignancy is important, along with at least one annual clinical follow-up.

PREVENTION

Can lichen sclerosus be prevented? How to prevent it?

This disease cannot be prevented, but long-term medication can slow its progression and improve prognosis.

How to prevent lichen sclerosus from recurring?

After treatment and symptom relief, even if symptoms completely disappear, long-term low-dose topical medication is necessary to maintain therapeutic effects and prevent recurrence.

If symptoms or signs reappear when medication frequency is reduced, readjust or increase the frequency. Gradually reduce the dosage again after clinical symptoms improve.