Lichen Sclerosus: Understanding the Condition, Treatment, and Long-Term Care
Lichen Sclerosus (LS) is a persistent inflammatory skin condition that most often affects the vulva (the outer part of the female genitals) and perianal region (skin surrounding the anus). While anyone can develop LS, it is more common in postmenopausal women and prepubertal girls.
If left untreated, LS can lead to ongoing discomfort, skin thinning, and scarring over time. Fortunately, early diagnosis and proper treatment can significantly improve symptoms, reduce the risk of complications, and help individuals maintain comfort and function.
What Causes Lichen Sclerosus?
The exact cause of LS is still unknown, but researchers believe it is linked to a combination of:
· Autoimmune factors: Many people with LS also have other autoimmune conditions, such as thyroid disease. This suggests the immune system may mistakenly attack healthy skin.
· Genetic predisposition: Family history plays a role in some cases, meaning LS may run in families.
· Hormonal changes: LS is more common after menopause, which may suggest hormonal shifts play a role in disease development.
· Skin trauma or irritation: Repeated friction, moisture, or trauma (like from persistent scratching, surgery, or radiation) may contribute to LS or worsen symptoms.
Though some studies have examined infections (like Lyme disease or HPV) as possible triggers, there is no strong evidence linking LS to infections.
Symptoms and How LS Affects the Skin
The most common symptoms of LS include:
· Itching and burning (which can be intense and may worsen at night)
· Skin thinning and fragility, leading to tearing, bruising, or bleeding
· White patches or plaques that may feel smooth or wrinkled
· Pain during sexual activity or urination
· Scarring or structural changes in severe cases
How LS Changes Over Time
In mild cases, LS may cause only slight irritation or color changes in the skin. However, in advanced cases, long-term inflammation and scarring can alter the structure of the vulva.
· In women, LS can cause labial resorption (loss of labial tissue), clitoral phimosis (adhesions over the clitoris), and narrowing of the vaginal opening.
Though LS itself is not life-threatening, untreated LS increases the risk of long-term pain, sexual dysfunction, and even skin cancer (squamous cell carcinoma) in rare cases.
How Is Lichen Sclerosus Diagnosed?
· A clinical exam by a knowledgeable provider (like a gynecologist, dermatologist, or urologist) is usually enough to diagnose LS.
· A skin biopsy may be recommended if the symptoms are unusual, if LS does not respond to treatment, or if there is concern for precancerous changes.
Since LS can mimic other skin conditions (like eczema, lichen planus, or yeast infections), it is important to get an accurate diagnosis before starting treatment.
Treatment: Managing LS for Long-Term Relief
While LS is a lifelong condition, it can be effectively managed with proper treatment.
First-Line Treatment: High-Potency Steroid Ointments
Clobetasol 0.05% ointment is the gold standard treatment for LS. It works by reducing inflammation, preventing scarring, and relieving symptoms.
· How it's used: Applied daily for the first 6-12 weeks, then tapered to 2-3 times per week for long-term maintenance.
· Is it safe? Yes! Despite concerns, studies show long-term steroid use does not thin the skin—in fact, untreated LS causes skin thinning and scarring.
Additional Treatments & Supportive Care
· Moisturizers & barrier creams – Help reduce dryness and irritation.
· Pelvic floor physical therapy – Helps restore function for individuals experiencing pain with sex or chronic muscle tension.
· Dilators or stretching techniques – For those with vaginal narrowing or tightness.
Surgical Treatment for LS Complications
Surgery is not a first-line treatment for LS but may be needed in cases of severe scarring that impacts daily life.
· Clitoral Phimosis Surgery: In cases where scar tissue fully covers the clitoris, a minor adhesion release procedure can restore sensation.
· Vulvar Granuloma Fissuratum (VGF) Surgery: When chronic fissures and scarring cause recurring pain, surgical excision may be necessary.
Even after surgery, LS is still present, meaning steroid treatment must continue to prevent further scarring.
Living With Lichen Sclerosus: What You Can Do
Since LS is a lifelong condition, it’s important to stay proactive in managing symptoms. Here’s how:
· Use your medication as prescribed – Even if symptoms improve, continuing steroid treatment helps prevent flares and scarring.
· Monitor your skin regularly – Look for any new sores, thickened skin, or unusual changes, and discuss them with your doctor.
· Check in with your provider – Regular follow-ups help catch any issues early, including rare precancerous changes.
LS is manageable with the right approach. Though the diagnosis can feel overwhelming, effective treatments are available, and many people with LS live full, comfortable lives.
Final Thoughts
· Early treatment is key – The sooner LS is treated, the better the long-term outcomes.
· Regular steroid use is safe – It prevents scarring, pain, and complications.
· LS is not contagious – It cannot be spread through sex, skin contact, or bodily fluids.
· Ongoing care matters – With the right treatment plan, most people with LS can prevent complications and maintain a good quality of life.
If you're struggling with persistent vulvar pain, or scarring, talk to a knowledgeable healthcare provider. There is help available, and you don’t have to manage LS alone.
Resources:
Lewis FM, Tatnall FM, Velangi SS, Bunker CB, Kumar A, Brackenbury F, Mohd Mustapa MF, Exton LS. British Association of Dermatologists guidelines for the management of lichen sclerosus, 2018. Br J Dermatol. 2018 Apr;178(4):839-853. doi: 10.1111/bjd.16241. PMID: 29313888.
Note:
This blog post is for informational purposes only and does not provide medical advice. It is not intended to diagnose or treat any medical condition. Please consult your healthcare provider before making decisions about your health or treatment options.
