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Let’s Talk About Lichen Sclerosus

Let’s Talk About Lichen Sclerosus

Many women experience genital itching and irritation at one point or another during their lives. Common causes include infections, such as yeast infections or bacterial vaginosis, hormonal changes (especially during pregnancy, perimenopause and menopause), and common external irritants, like fragranced body washes. Some women become incredibly frustrated with recurring vulvar itching without any obvious cause and may not be aware of a lesser-known condition called Lichen Sclerosus (LS). In fact, the diagnosis of this condition is often delayed, undiagnosed or even misdiagnosed. This can delay treatment and management of sometimes debilitating symptoms.

What Is Lichen Sclerosus?

Lichen Sclerosus is one of several inflammatory skin conditions that specifically affects the vulva. To be clear, the vulva includes all external female genitalia including the mons, clitoris, labia majora and minora, peri-urethra, external vaginal opening, perineum and peri-anal areas:

 

     Figure A1

What Causes Lichen Sclerosus?

The direct cause of LS is not well understood. Some currently classify it as an autoimmune disease; while studies of identical twins suggest genetics may also play a role.2 Others hypothesize that previous infections may cause the onset of this disease, but this has not been proven. LS does not appear to be related to low estrogen levels since estrogen replacement is ineffective as a treatment method. In short, there’s not one definite cause of Lichen Sclerosus. Instead, it may occur due to a variety or combination of factors, including genetic, immune mediated, hormonal, related to external irritants, and infectious.

How Common is Lichen Sclerosus?

It’s hard to know exactly how common LS is, since so many cases are asymptomatic or go undiagnosed. In the US, the occurrence of LS is estimated at 1.7-3%. LS is known to affect menopausal women primarily, but it has also been diagnosed in prepubescent girls.3,4 Diagnosis is assumed based on visual inspection and confirmed by a simple, in-office biopsy.

What Are the Symptoms of Vulvar Lichen Sclerosus?

Surprisingly, some women may remain comfortable and without symptoms despite a biopsy-proven case of LS. Intense itching with irritation from vigorous scratching is iconic. Others may experience small painful fissures, especially on the perineum, the clitoral hood or in between the labia, mostly due to scratching. Vulvar pain and painful sex are common.

A visible whitish hue resembling parchment paper on the vulvar skin is a typical LS sign upon examination. The clitoris might appear fused or stuck together. The labia may appear flattened and the tissue very thin. Raised or flat white plaques (defined areas of skin) might be present throughout the vulva. An intense itch/scratch cycle can cause red or bruised vulvar tissue. These signs may be exaggerated in menopausal women who may already be exhibiting physical signs of atrophy.

How is Lichen Sclerosus Diagnosed?

In many instances a patient’s physical symptoms, medical history and visual examination will suggest LS. A vulvar skin biopsy in representative areas of skin is required to confirm a diagnosis. Other conditions to be ruled out include vaginal atrophy due to menopause, vulvitis (vulva inflammation) due to an external irritant, and other skin conditions, such as eczema or psoriasis.  Vulvar cancer and precancer are always top of mind, and a biopsy is often used to rule out these conditions.

How is Lichen Sclerosus Treated?

Management of LS is aimed at preventing symptoms and limiting the presence and progression of symptoms. Treatment for LS is ongoing. Topical steroids, used indefinitely, are the standard form of care and most women can tolerate this therapy without long term side effects.  A potent topical steroid cream or ointment (such as clobetasol propionate) used daily for up to 12 weeks is the typical treatment. Once symptoms abate and are in remission, ongoing steroid use, scaled back to once or twice a week, is recommended as maintenance.     

Is Follow Up Needed for Lichen Sclerosus?

Women with a diagnosis of LS should be examined every 6-12 months, since LS is considered a precancerous condition. Those who don’t respond to topical steroid treatment should be reevaluated with an exam and biopsy to rule out vulvar precancer or cancer.

LS carries a 2-6% risk of progressing into vulvar cancer; this risk is significantly higher if LS and precancer coexist.5 Steroid therapy seems to reduce the long-term risk of LS developing into cancer in some women.6 Newer therapies on the horizon for LS include energy-based tissue ablation (which works to destroy affected tissue) and platelet-rich plasma injections (which utilize a concentration of a patient's own cells to accelerate the healing). Those with complex cases of LS may benefit from consultation with a vulvar specialist or gynecologist.

Resources 

  1. The Interstitial Cystitis Survival Guide by Robert Moldwin, MD., New Harbinger Publications, Inc. 2000
  2. Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Womens Health. 2020 Jan 15;12:11-20. doi: 
  3. Goldstein AT, Marinoff SC, Christopher K, Srodon M. Prevalence of vulvar lichen sclerosus in a general gynecology practice. J Reprod Med. 2005 Jul;50(7):477-80. PMID: 16130842.
  4. Leibovitz A, Kaplun V, Saposhnicov N, Habot B. Vulvovaginal examinations in elderly nursing home women residentsArch Gerontol Geriat, 31 (2000), pp. 1-4.
  5. Bleeker MC, Visser PJ, Overbeek LI, van Beurden M, Berkhof J. Lichen Sclerosus: Incidence and Risk of Vulvar Squamous Cell Carcinoma. Cancer Epidemiol Biomarkers Prev. 2016 Aug;25(8):1224-30. doi: 10.1158/1055-9965.EPI-16-0019. Epub 2016 Jun 2. PMID: 27257093.
  6. Lee A, Fischer G. Diagnosis and treatment of vulvar lichen sclerosus: An Update for Dermatologists. Am J Clin Dermatol. 2018 Oct;19(5):695-706. doi: 10.1007/s40257-018-0364-7. PMID: 29987650

 

Comments

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I have LS and i did not know what it was. I was on vacation and I started having very bad itching, I thought it was a STD (Herpes) because I do have that. Now I find out I have LS. I have been treating it with Clobatesol but I am not comfortable with that treatment because of what I heard from everyones experience. I found out about a product someone made for her sister that is all natural Ticklebelly LS salve to apply twice a day and also a soap that matches the ph in the Vulva. So far so good and I hope it keeps working. I developed this when I first moved to Italy and I was very stressed out. They say this illness is stress related. No one in my family has this. I also developed PMR which is called polymyalgia rheumatica at this same time. These are all auto immune and I developed them at the same time. I belong to a organization called Lichen Sclerosus Support Network. Very good to join and so your support so they recognize how many of us are out there with this. There is no cure.

Theresa Rutigliano on

This website is very informative and helpful. My mother has lichen planis. She has dealt with this for years. I have never heard of this.

Pam Hess on

Very interesting info

Melanie on

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