Life Expectancy with Lichen Sclerosus: Symptoms, Treatments and More

You’re likely feeling a mix of confusion, concern, and uncertainty. As a relatively rare condition, Lichen Sclerosus can raise many questions — “What is the life expectancy with Lichen Sclerosus?” “How am I going to manage it?” These are entirely valid concerns, and you’re not alone in asking them.

A new diagnosis can feel overwhelming, but with the right information, guidance, and support, there is a clear path forward — one focused on managing symptoms, protecting long-term health, and restoring confidence in your body.

Take a deep breath — these questions are not only valid, but important. Understanding Lichen Sclerosus fully is the first step toward managing it with confidence and clarity. In this blog, I’ll guide you through the key aspects of the condition, including symptoms, risk factors, diagnosis, and the latest treatment options available. We’ll also explore the topic of life expectancy with Lichen Sclerosus — a question many patients ask.

Let’s navigate this journey together, with knowledge and support at every step.

About Lichen Sclerosus

Lichen Sclerosus is a chronic inflammatory skin condition that most commonly affects the intimate areas — including the vulva, penis, foreskin, urethra, and anus. In rare cases, it can appear on other parts of the body. As an autoimmune disorder, it develops when the immune system mistakenly attacks healthy skin cells, leading to ongoing inflammation.

The skin in affected areas often becomes itchy, fragile, white, and thin — sometimes with a crinkled or wrinkled appearance. In more advanced cases, persistent irritation can cause blisters, cracks, or sores to develop.

What are the Causes of Lichen Sclerosus?

Lichen Sclerosus is considered a rare condition, and while its exact cause remains unknown, research suggests that autoimmune and hormonal factors may play a role. According to the National Library of Medicine, it affects roughly 1 in 300 people in the general population. Although it can occur in both men and women, it is significantly more common in females.

The condition most frequently involves the skin around the genitals — in fact, up to 98% of cases are found in these areas. Only a small percentage, around 15–20%, involve skin elsewhere on the body.

It’s important to note that Lichen Sclerosus does not affect life expectancy. With appropriate care and ongoing management, many individuals live full and healthy lives.

Is lichen Sclerosus Contagious?

No, Lichen Sclerosus is not contagious. It cannot be passed from one person to another through physical touch or sexual contact. This condition is related to the immune system and is not caused by infection, so there is no risk of transmission between partners.

What are the Lichen Sclerosus Symptoms?

Before we explore the topic of life expectancy with Lichen Sclerosus, it’s essential to first recognise the symptoms — early identification can help you manage the condition more effectively and reduce long-term complications.

Common symptoms of Lichen Sclerosus include:

• Typically affects the genital area; less commonly appears on other parts of the body

• Begins with redness, gradually progressing to pale, thin, and fragile skin

• Development of white, thickened, or hardened patches

• Persistent itching, often more intense at night

• Inflammation and discomfort

• Burning sensations

• Ulceration or skin breakdown

• Dysuria (pain when passing urine)

• Dyspareunia (pain during sexual intercourse)

• Weak urinary stream

• Tightening of the foreskin in men

• Fluid leakage from the penis (not to be confused with typical penile discharge)

If any of these symptoms become severe or begin interfering with your daily life, please don’t delay in seeking medical advice. Early intervention and a tailored treatment plan can significantly improve comfort, protect the skin, and support long-term wellbeing.

Risk factors of developing lichen sclerosus?

Understanding the risk factors for Lichen Sclerosus can help identify who may be more susceptible to developing the condition. While it can affect anyone, certain groups are at a higher risk:

• Postmenopausal women, particularly between the ages of 40 and 60

• Individuals assigned female at birth (AFAB), including children who have not yet reached puberty

• Individuals assigned male at birth (AMAB), especially those with an intact foreskin

• A personal or family history of autoimmune conditions or allergies

• Those living with diabetes

• Being overweight or obese, which may increase inflammation and skin sensitivity

Recognising these risk factors allows for earlier detection and more proactive care — something I strongly advocate in all aspects of intimate health.

How is Lichen Sclerosus Diagnosed?

Diagnosis of Lichen Sclerosus is usually made through a careful clinical assessment. Because it’s a rare and often misunderstood condition, a thorough evaluation is essential to ensure accurate identification and effective management.

Your healthcare provider may carry out the following:

• A detailed medical history, including any current symptoms

• Family history, particularly of autoimmune conditions

• Screening for associated autoimmune disorders

• A full skin examination to assess affected areas

• A gynaecological examination for women, where appropriate

• Thyroid function tests, as thyroid imbalances can sometimes be linked

This comprehensive approach helps build a clear picture of your overall health and ensures any underlying factors contributing to your symptoms are properly addressed.

What is the life expectancy with lichen sclerosus?

Lichen Sclerosus does not impact life expectancy — it is not a life-threatening condition. Instead, it primarily affects the skin around the genital and anal areas, and while it can cause significant discomfort, it does not shorten lifespan.

However, if left undiagnosed or untreated, it can lead to complications such as scarring, pain, and a reduced quality of life. That’s why early diagnosis and a personalised treatment plan are so important. With the right care, many individuals are able to manage their symptoms effectively and continue living full, confident, and comfortable lives.

What are the treatment goals for Lichen Sclerosus?

The goals of treating Lichen Sclerosus are centred around both immediate comfort and long-term skin health. A well-managed treatment plan aims to:

• Alleviate distressing symptoms such as persistent itching, burning sensations, and discomfort during urination

• Halt the progression of skin thinning (atrophy), which can make the skin more fragile over time

• Prevent the development of scarring and anatomical changes, particularly in the genital area

• Lower the risk of cellular changes that could increase the likelihood of vulval or penile cancer

• Provide lasting symptom relief, helping you regain comfort, confidence, and quality of life over the long term

With the right approach, many patients experience significant improvement, often to the point where symptoms become minimal or even enter long-term remission.

What treatment options are available for lichen sclerosus?

There are various treatments for Lichen Sclerosus, may be a 15 minute chat with our patient coordinator will clarify any questions you may have?

What are the long-term complications and Lift Expectancy with Lichen Sclerosus?

While Lichen Sclerosus is not life-threatening and does not impact life expectancy, it can lead to long-term complications if not diagnosed and managed appropriately. These complications can significantly affect both physical comfort and emotional wellbeing.

Some of the potential long-term effects include:

• In women, scarring can cause the vaginal opening to narrow (introital stenosis), and may result in the fusion of the labia minora, affecting both comfort and intimacy

• In men, scarring may lead to tightening of the foreskin (phimosis), which can interfere with urination and sexual function

• In rare cases, chronic inflammation from untreated LS can increase the risk of developing squamous cell carcinoma (a type of skin cancer) in the affected area

• Psychosexual impacts, such as pain during intimacy, reduced confidence, and anxiety around physical relationships

• Sensory disturbances, including ongoing burning sensations or neuropathic pain

Recognising these risks highlights the importance of early intervention and ongoing care. With the right support, many patients experience long-term symptom relief and avoid complications altogether.

What are the tips for managing Lichen Sclerosus?

There are several simple yet effective ways to manage and help prevent flare-ups of this inflammatory skin condition. While treatment should always be tailored to your individual needs, the following measures can support skin healing and long-term comfort:

• Cleanse the area gently using mild, fragrance-free products

• Avoid harsh soaps, chemicals, or irritating hygiene products

• Keep the skin well-hydrated with a gentle, non-perfumed moisturiser

• Protect the affected area from direct sunlight, especially if the skin is thin or fragile

• Always follow your prescribed treatment plan exactly as directed

• Attend all scheduled follow-up appointments to monitor progress and adjust care when needed

Consistent, gentle care combined with medical support can make a significant difference in reducing symptoms and improving quality of life.

Summary?

Receiving a diagnosis of an inflammatory skin condition affecting the genital area can feel overwhelming. It’s completely normal to have many questions — “What does it look like?” “How will it affect my life?” “What is the life expectancy with Lichen Sclerosus?”

The good news is that Lichen Sclerosus does not impact life expectancy. However, if left unmanaged, it can cause persistent discomfort and lead to complications such as scarring or changes to the skin.

With the right treatment plan, regular monitoring, and open communication with your healthcare provider, most people are able to control symptoms and maintain a high quality of life.

Stay informed, follow your medical guidance closely, and never hesitate to seek support. With a proactive and personalised approach, living confidently with Lichen Sclerosus is absolutely possible.

Frequently Asked Questions

1. What percentage of people are affected by Lichen Sclerosus?

Lichen Sclerosus is considered a rare condition, affecting around 1 in every 300 people in the general population. In children, the estimated prevalence is about 0.1%. Among postmenopausal women, it may affect up to 3%, while in men, it’s less common — with a prevalence of approximately 0.07%.

2. Can you live a long life with Lichen Sclerosus?

Absolutely. Lichen Sclerosus is a chronic condition, but it does not affect life expectancy. With timely diagnosis, consistent treatment, and regular follow-up, most individuals manage their symptoms effectively and enjoy a full and active life.

3. Can genital Lichen Sclerosus be cured?

While there is currently no permanent cure for genital Lichen Sclerosus, it can be very well managed. Treatments such as topical corticosteroids and immunomodulating therapies help to reduce inflammation, relieve itching and discomfort, and protect the skin from further damage. Many patients experience significant and lasting relief with a consistent care plan.

4. Can you die from Lichen Sclerosus?

No, lichen sclerosus itself is not fatal. While it’s a chronic condition that can cause discomfort and lead to complications like scarring if left untreated, it does not directly affect life expectancy. However, studies have shown that untreated lichen sclerosus may increase the risk of developing vulvar cancer.