CHRONIC DISEASE. SPECIALIST MANAGEMENT.

Vulvar lichen sclerosus: what you need to know from a specialist clinic

Vulvar lichen sclerosus (VLS) is a chronic inflammatory disease of autoimmune origin. It affects the vulvar area and, without appropriate treatment, can progress and significantly compromise quality of life. In this guide you will find rigorous clinical information—not general educational content—on the disease, its diagnosis, and current treatment options.

WHAT IS VLS

What is vulvar lichen sclerosus

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Vulvar lichen sclerosus (VLS) is a chronic inflammatory disease of the skin and mucous membranes that primarily affects the vulvar area. Its origin is autoimmune: the immune system abnormally attacks vulvar tissue, causing chronic inflammation, changes in skin structure and, over time, anatomical changes that may be irreversible.

The name has changed over the years—lichen scleroatrophicus, vulvar kraurosis, lichen sclerosus et atrophicus—but the current classification, established by the International Society for the Study of Vulvovaginal Disease (ISSVD), is vulvar lichen sclerosus. This is the terminology we use in clinic and the one that should appear in your diagnostic report.

From my experience as a surgeon specialising in vulvar pathology, VLS is a condition that is frequently underdiagnosed. Many women spend years with symptoms attributed to other causes—recurrent infections, menopause, stress—before receiving a correct diagnosis. That delay has consequences: the disease can progress and cause anatomical changes that do not reverse.

Is it common?
Prevalence estimates vary, but available data place VLS at around 1–3% of the adult female population. It mainly affects women in perimenopause and postmenopause, although it can occur at any age—including prepubertal girls, although that group is not the focus of this guide.

SYMPTOMS

How vulvar lichen sclerosus presents

The most characteristic symptom of VLS is severe vulvar pruritus—itching that may be continuous, worsen at night, and be refractory to usual treatments for non-specific vulvar itching. Many patients describe it as an itch unlike what they have experienced before: deeper, more persistent, harder to ignore.

However, VLS is not just itching. The clinical presentation includes:

> Vulvar burning and stinging, especially when urinating or with tight clothing

> Whitish plaques on the vulva—hypopigmentation characteristic of VLS

> Vulvar tissue atrophy—the skin thins, loses elasticity, and becomes fragile

> Recurrent fissures and erosions, which may bleed and be painful

> Dyspareunia—pain during sexual intercourse, which may lead to stopping sexual activity

> Progressive anatomical changes: fusion of the labia minora, clitoral phimosis, narrowing of the introitus

Not all patients present all symptoms. In early stages, VLS may present only as mild itching or as minimal skin changes that go unnoticed. In advanced stages, anatomical changes may be significant.

CAUSES

Why vulvar lichen sclerosus occurs

The exact cause of VLS is not fully known, but there is scientific consensus regarding its autoimmune nature. The immune system mistakenly identifies vulvar tissue as a threat and generates a chronic inflammatory response that progressively damages the tissue.

Several factors are associated with VLS based on the available evidence:

Genetic predisposition. VLS has a documented hereditary component. It is more common in women with a family history of autoimmune diseases or VLS.

Immune dysregulation. Patients with VLS have a higher prevalence of other autoimmune diseases—Hashimoto’s thyroiditis, vitiligo, rheumatoid arthritis—which supports an autoimmune origin.

Hormonal factors. The higher prevalence in perimenopause and postmenopause suggests a modulatory role of oestrogens, although a direct causal relationship is not fully established.

Local factors. Repeated trauma, chronic irritation, and certain local conditions may act as triggers in women with a predisposition.

DIAGNOSIS

How vulvar lichen sclerosus is diagnosed

The diagnosis of VLS is primarily clinical: it is based on the patient’s history and physical examination of the vulvar area. A specialist experienced in vulvar pathology can diagnose VLS in the consultation, without additional tests, when the clinical presentation is characteristic.

When is a biopsy indicated?

A vulvar biopsy is indicated when there is diagnostic uncertainty, when the response to treatment is not as expected, or when associated malignancy needs to be ruled out. It is not essential in every case, but it is in those that raise diagnostic uncertainty.

Diagnostic delay: a real problem

According to available data in the clinical literature, the average diagnostic delay for VLS is several years from symptom onset. The causes are multiple: non-specific symptoms in early stages, lack of specific training at some levels of care, and many patients’ reluctance to seek help for symptoms in the intimate area.

If you have symptoms that make you suspect VLS and you have not received a diagnosis, or if you have doubts about your current diagnosis, a specialist second opinion may be the most useful next step.

COURSE AND RISK

How vulvar lichen sclerosus progresses

VLS is a chronic disease. Without treatment, it tends to progress: symptoms intensify, skin changes spread, and anatomical changes accumulate. With appropriate treatment, it is possible to control the disease, reduce symptoms, and slow progression—although not eliminate the underlying predisposition.

The risk of vulvar carcinoma

VLS is associated with an increased risk of developing vulvar squamous cell carcinoma. Risk estimates vary by study, but the ISSVD guideline and the 2024 EADV guideline are clear: regular clinical follow-up is essential for all patients with VLS, regardless of symptom control.

This is not information intended to cause alarm, but to underline the importance of follow-up. The risk is real but low in absolute terms—and it is managed with periodic reviews with a specialist experienced in vulvar pathology.

TREATMENT

Treatment options for vulvar lichen sclerosus

Treatment of VLS has two objectives: to control symptoms and to slow the progression of tissue damage. International clinical guidelines—ISSVD, BAD 2018, EADV 2024—establish ultrapotent topical corticosteroids as first-line treatment, mainly clobetasol propionate 0.05%.

Corticosteroids are effective in controlling symptoms in most patients, but they do not repair tissue damage that has already occurred. For women in whom corticosteroids do not provide a sufficient response, or in whom VLS has caused significant tissue damage, there are additional options that include regenerative medicine.

Liquenia® Treatment is the protocol we have developed at the Nixarian Institute to act on tissue affected by VLS. It is not the only treatment available, nor is it indicated for all patients—but for a specific patient profile, it can make a significant difference.

Explore each aspect

Explore every aspect of vulvar lichen sclerosus in depth

Symptoms

Itching, burning, dyspareunia, and all VLS symptoms explained from a clinical perspective.

Clinical signs

What the specialist observes on examination: whitish plaques, atrophy, fissures, and anatomical changes.

Diagnosis

How VLS is diagnosed, when a biopsy is indicated, and why early diagnosis matters.

Differential Diagnosis

Which other conditions can be confused with VLS and how to distinguish them.

Causes

What we know about the autoimmune origin of VLS and the factors that influence its onset.

Phases and Evolution

How the disease progresses and what changes can be expected with and without treatment.

Risk of vulvar cancer

The relationship between VLS and vulvar carcinoma, and why follow-up is essential.

Frequently asked questions

The most common questions about VLS answered by Dr Patricia Gutiérrez Ontalvilla.

DELVE DEEPER

More related information

VLS Treatments

Complete clinical overview

Liquenia® Treatment

The regenerative protocol

Living with vulvar lichen sclerosus

Daily care guide

Scientific evidence

Research and publications

Do you have vulvar lichen sclerosus and are looking for a specialist assessment?

At our Nixarian Institute clinic, we evaluate your case with the approach of a specialist in vulvar pathology with more than two decades of experience. If you have doubts about your diagnosis, your current treatment, or the options available, the first step is an assessment consultation.