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VULVAR
Lichen
Sclerosus
Prepared By:
Dr. Kara Dionisio ND & Dr. Dolores Fernandez ND
“
No‐one ever gave me any information. Nobody told me to use like a moisturizer or anything at all. That wasn’t discussed.
– Paula
What is Lichen Sclerosus?
Lichen Sclerosus (LS) is a chronic skin condition, primarily impacting the skin in the genital and anal regions. It's a condition that can occur at any age but is most commonly seen in postmenopausal women. The hallmark of LS is white, patchy skin that is thinner than normal. It can cause discomfort, itching, and pain, and in severe cases, the skin may crack or bleed. Despite these challenges, it's crucial to understand that LS is not a contagious condition. It's a unique skin issue that arises from a combination of genetic, hormonal, and immune system factors.
Living with Lichen Sclerosus
Your comfort and quality of life are our top goals in managing this condition. Management typically involves topical treatments to alleviate symptoms and protect the skin, along with vulvar care to reduce irritation and discomfort. Regular monitoring and care are key to preventing complications and maintaining skin health. With a supportive healthcare team and a proactive approach to treatment, many individuals with LS find that they can manage their symptoms very successfully.
Lichen sclerosus is a chronic inflammatory skin disease that predominantly affects the anogenital skin.
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Symptoms.
Vulvar Pain / Soreness
Burning
Vulvar Itching (often worse at night)
Skin fragility that can easily tear or bruise
Sexual difficulties
Painful urination
Asymptomatic (15-40%)
Perez 2017, Kirtschig 2016
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Treatment
Topical Corticosteroids (TCS)
Topical steroids, especially Clobetasol 0.05% ointment, are considered standard of care in are in treating and managing vulvar lichen sclerosus. A noticeable improvement in symptoms is typically seen after the initial month of daily application.
Using the steroid cream is essential to:
- Reduce Inflammation: Minimizing the inflammatory response in affected rskin areas.
- Healing the Skin: Promoting the repair of skin fissures and erosions.
- Preventing Disease Progression: Halting the advancement of the condition to prevent complications, including the increased or developing vulvar squamous cell carcinoma (SCC), a rare but severe complication of untreated Lichen Sclerosus.
How often do I apply the steroid?
The treatment regimen often adheres to the British Dermatology Guidelines, which outlines a structured approach to applying the ointment. However, it's important to emphasize:
⚠ Individualized Treatment Plan: Always adhere to the specific advice and application instructions provided by your prescribing physician. Your treatment plan may vary based on your individual condition and response to therapy.
Standard
Treatment Regimen.
Month 1
Every Day
Month 2
Alternative Days
Month 3
Maintenance
Twice Weekly
2 times per week
OR
as prescribed
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Treatment
Ointments are recommended over creams as first-line therapy.
Topical Corticosteroids (TCS)
Ointment vs. Cream:
Ointments are generally preferred over creams for treating vulvar lichen sclerosus; they are more e ective, stay on better, and don’t contain irritating ingredients that a cream may have. However, discuss with your healthcare professional to understand what's best for your specific case.
How much do I use?
- The recommended amount for each application is a ½ Fingertip Unit (FTU) or a large pea size.
- Defining 1 FTU: This is the amount of ointment squeezed out from a tube with a 5 mm nozzle, extending from the distal skin crease to the tip of the index finger. Therefore, ½ FTU: Half of that amount, is sufficient for each application
- A 30-g tube of the ointment is typically expected to last about three months when you start your treatment.
Application
Amount .
large pea-sized amount
= about 0.33 grams
Mautz, 2019
1 Finger tip unit (FTU)
= 0.5 grams
1/2 Finger tip unit (FTU) = 0.25 grams
A 30 g tube of ointment is typically enough to last for the initial 3-month treatment period.
Applying Topical Steroid Treatment for LS
To effectively manage LS with topical steroids, correct application is crucial. Here are the steps and tips for applying your medication:
1
Where to apply:
- Apply the steroid only to the areas affected by lichen sclerosus as indicated by your healthcare provider.
4
Amount to use:
- Use only a pea-sized amount for each application area. Rub it in well for 1.5 to 2 minutes to ensure it penetrates through all skin layers.
2
Choosing the right formulation:
- Opt for an ointment over a cream, as ointments are better at penetrating the thickened skin and don't contain alcohol that can cause burning on broken skin.
5
Frequency of application
- The frequency will depend on the severity of your LS. It may range from once a day to twice a week, based on your healthcare provider's advice.
3
Preparation before application:
- Soak in warm water for 15-20 minutes to soften the skin, or alternatively, use a warm shower or compress if soaking is not possible.
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Continued Use in Remission:
- Even in remission, maintenance applications (typically twice a week) are recommended to prevent recurrence and reduce the risk of complications like vulvar cancer.
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If you watch anything
...watch this
Emollients.
- Emollients have been used to soften and protect the skin from cracks in VLS patients. Use as often as needed
- Emollient cream can be used as a soap substitute to wash with
- Can be used to prevent contact of urine to affected tissues
- Can be used during sexual intercourse, which might otherwise be painful.
Vulvar Care.
Friction or damage to the skin triggers VLS and make it worse. This reaction is called a ‘Koebner response’. Irritation from urine leakage or wearing incontinence pads or panty liners can make the symptoms worse.
Bamboo toilet paper
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Supportive Care
Nutrition & Supplements
It's important to note that research on nutrition, supplements, and natural therapies for Vulvar Lichen Sclerosus (VLS) is limited and often not of high quality.
This means that while some options might seem promising, they should be approached with caution and discussed with your healthcare provider.
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Supportive Care
Pelvic Health Physiotherapy
Pelvic floor therapy is a key component in managing VLS, especially for issues like painful intercourse (dyspareunia), adhesions, and sexual problems. This therapy complements other medical treatments and can significantly improve your quality of life.
- Managing Pain During Intercourse: Pelvic floor therapists use specialized techniques to
- reduce pain.
- Adhesion Treatment: Manual therapy helps break down adhesions, easing pain and improving movement
- Dilator Therapy: Graduated vaginal dilators gently stretch the tissues, making sexual activity more comfortable.
- Muscle Training: Exercises to strengthen or relax pelvic muscles can address conditions like painful intercourse
- Education and Support: Therapists provide guidance on self-care and emotional support.
Find a Pelvic Health Physiotherapist
We recommend choosing one that has some Level 3 training, which you can search in the directory.
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Supportive Care
Pelvic Health Physiotherapy
Vulva Self-Examination:
Conducting a routine self-examination of your vulva is an important, caring step in managing Lichen Sclerosus (LS). Since LS can slightly increase the risk of squamous cell carcinoma, a kind of skin cancer, it's beneficial to be gently attentive to any changes in your skin. You can find a guide on vulvar self exam HERE
Annual Check-Ups:
- Routine Visits: It's recommended to see your primary health professional or specialist at least annually to monitor your LS, review effectiveness of therapy, and re-visit current treatment approaches
- Open Discussions: Talk about any symptoms, flare-ups, and how LS is impacting your life. Your feedback helps tailor your treatment.
When to Seek Further Help:
- Specialist Consultation: If you notice scarring or pain with sexual activity or urination, or if the treatment isn't working as expected. Or, if you’re noticing changes to your symptoms or appearance of your vulva.
- Topical Ointment Reactions: If you suspect allergies or skin irritation to prescribed creams.
- Mental Health Support: Consider consulting a therapist if LS is impacting your mood, quality of life, or sexual health.
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Resources
Lichen Sclerosus Support Network & Podcast
www.lssupportnetwork.org
Dr. Jill Krapf, MD
Gynecologist
Lichen Sclerosus Expert
“
She made me feel confident that I would be okay, that I was being cared for.
– Sarah