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
- The Interstitial Cystitis Survival Guide by Robert Moldwin, MD., New Harbinger Publications, Inc. 2000
- Krapf JM, Mitchell L, Holton MA, Goldstein AT. Vulvar Lichen Sclerosus: Current Perspectives. Int J Womens Health. 2020 Jan 15;12:11-20. doi:
- 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.
- Leibovitz A, Kaplun V, Saposhnicov N, Habot B. Vulvovaginal examinations in elderly nursing home women residentsArch Gerontol Geriat, 31 (2000), pp. 1-4.
- 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.
- 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
Post commentI was diagnosed in the early days of the pandemic. My symptoms are kept at bay with Clobetasol. The biggest issue is explaining to sexual partners why my clitoris looks the way it does. It still works, but it’s small. And my labia are flattened out. Embarrassment is my biggest symptom these days. I usually tell them I have an autoimmune condition where my skin tears easily. It’s the truth and they just accept it and move on. My second biggest symptom is fear. I’m hoping to live a long life and I’m in my mid 40s now. I worry that in the future I’ll be dependent on someone, I’ll be mentally incapacitated, no one will know how to take care of this issue, and there will be pain. My LS doctor told me “just don’t worry about that.” He sucks. I have a different doctor now.
I want to try hyaluronic injections into my labia and clitoris to plump them back up. Has anyone had any success with that?
I had no idea what this was until I told my doctor about a spot that always itched. When I pointed out the spot, she suspected and later confirmed LS with a biopsy. Like others, I use Clobetasol to keep it in check. I also found I have less trouble now that we use Costco brand TP at the house. We were forced to switch when our normal brand was nearly impossible to get during the pandemic. My new menopause practitioner recommended emu oil which can be obtained on Amazon, but I haven’t felt the need to try something else. Side note, I have found that using Revaree has made my LS better as well.
Thank you so much for posting this information! I was diagnosed with this 3 years ago after a biopsy but the doctor never really provided in depth information. It sounds like from this article there are still a lot of unknowns. I was prescribed steroidal salve which has been effective but was never asked to come in for any follow up exams even 3 years later. Basically Information provided to me overall was lacking so I never took this seriously and just applied the salve during flair ups. Thank you for posting these informative articles and covering all aspects of women’s gynecological health and to help us take control of our health.
Any information on ls is helpful. Thank you.
I was diagnosed with LS about 2-3 years ago. I had never heard of it. I have been in menopause for about 16 years. The itching associated with the LS is pretty unbearable. I tried the steroid and I have never gone 1 day without using something to try to help. I use Cerave healing ointment daily but others days I use 2.5% hydrocortisone ointment. I have not gone a day since diagnosed without using something! I am also on Premarin cream a few times a week because it helps with the dryness from menopause. Sex with my husband has been very challenging and causes such a strain on our relationship.