“The first thing many women notice about lichen sclerosus (LS) is the itch,” says Dr. Rebecca Dunsmoor-Su,* OB/GYB and Gennev Director of Health. “Unfortunately, because of this, women are often misdiagnosed as having a yeast infection--sometimes three or four times before LS is correctly identified.”

You might be wondering what, exactly, we’re talking about. And you wouldn’t be the only one. For those who’ve never experienced LS, the name alone draws a blank. An eruptive skin disease, LS does affect men, children, and younger women, but the group most likely to develop the rare condition are perimenopausal and post-menopausal women with skin along with vaginal changes in menopause

Let’s demystify LS, shall we? Because lichen sclerosus is progressive, the sooner it’s caught and treatment begins, the better. So we’re going to talk about everything LS, from how it’s diagnosed and treatment options to what causes lichen sclerosus to flare up and who can help you do battle with this serious condition.

Lichen Sclerosus Defined and Symptoms to Watch For

According to Dr. Rebecca, LS is a “dermatologic condition most commonly seen on external genitalia. It can appear on other areas of the body, but 95% of the time, it’s on the vulva. It’s a chronic, progressive inflammation and thinning of the skin of the vulva.”

Though an exact cause has not been identified, studies have shown that hormone issues, an overactive immune system, genetic factors, and injuries that caused damage or scarring to the skin all may play a part in someone getting LS. 

Now, let’s talk about symptoms.

Itching 

Often intense and leading to burning sensations and pain. Note: Because other types of infections in that area can cause itching, Dr. Rebecca says to pay attention if the itching extends back to the perianal area, which can be a sign of LS. If you see any of the above, make an appointment to see your doctor.

If you don’t already have a doc, get connected with a Gennev menopause-certified gynecologist who will give you a trusted opinion. Book an appointment here.

White Spots That Grow

In the early stages of LS shiny, smooth, white spots may appear on your skin. As the disease progresses, the white spots grow and connect, forming larger patches that often become thin and crinkled.

Blisters and Bruising

The impacted skin’s typical location (down there), combined with its thinning, can lead to blisters and bruising from rubbing and friction. In severe cases, bleeding can occur, too.

Scarring and Worse

If LS is left untreated, scarring can occur which, , “produces problems with urination, defecation, and intercourse.”

Suspect You Have LS?

Make an appointment with your OB/GYN. She will likely be able to diagnose LS from the symptoms described and a visual inspection. If the diagnosis is uncertain, your doc may recommend a biopsy to be sure. There is no blood test or other diagnostic.

There are other issues that can be mistaken for LS--lichen planus or certain pre-cancerous conditions, for example--so it’s important to be diagnosed and treated by an expert.

Lichen sclerosus Treatment Options

Currently, there is no cure for LS, but the condition can be managed, says Dr. Rebecca. There are two ways LS is typically treated.

Topical Steroids 

Dr. Rebecca’s approach is to first employ a number of topical steroids (such as clobetasol), then taper down to the lowest amount of steroids to keep the condition from flaring. The ointment is placed directly on the vulva. “When patients are first diagnosed, we use steroids every night for three weeks, then taper down to once a week,” says Dr. Rebecca. “The important thing to remember is that LS is chronic and progressive. You’ll need to continue with treatment for the rest of your life.”

Estrogen for Atrophy

To give patients the best possible outcome, the tissues around the area need to be treated for genital atrophy. Estrogen works for some women; laser treatment from the Mona Lisa Touch has helped others. “There is very very limited evidence that the Mona Lisa Touch can treat the vulvar symptoms, which would allow us to turn down the steroids,” says Dr. Rebecca, “but more research and study needs to be done before we can make this claim.”

What Can Happen if LS Goes Untreated?

Worsening Symptoms

LS is progressive, meaning symptoms will worsen over time. Skin can fissure and crack, getting thinner and bleeding more easily, and itching will intensify.

Loss of Vulvar Architecture

Dr. Rebecca explains that “A woman has both a labia majora and a labia minora. In severe lichen sclerosus, the minora tends to fold into the majora, and the clitoral hood and clitoris can become involuted. The skin can become so atrophied that the vaginal opening closes, making intercourse impossible.”

The “C” Word

In rare cases, LS can turn into squamous cell carcinoma--cancer of the vulva. “This is less than 5% of women with lichen sclerosus,” says Dr. Rebecca, “but we need to keep track of the vulva for this reason. If areas are not well treated by the steroids, we may need to do a biopsy, just to be safe.”

What Causes Lichen Sclerosus to Flare-up?

As we mentioned before, the exact cause of LS is unknown, says Dr. Rebecca, though it’s believed to have an autoimmune aspect because women with LS are also often at higher risk of other autoimmune disorders. In addition, LS seems to be associated with a low-estrogen state: Women are at most risk of developing the condition before puberty or during perimenopause and menopause. If younger women develop the condition during a time of normal cycling, it generally occurs or flares when a woman is in a lower estrogenic state--if she’s taking low-dose oral birth control pills for menopause, for example, or after having a baby. It also may have a slight genetic component; there are “clusters” within family groups, Dr. Rebecca says, but just because your mother has it, doesn’t mean you’ll develop it.

All that being said, here are some ideas (medical and lifestyle-related) for keeping flare-ups at bay.

Topical Steroids, Take Two

Your doctor may increase the prescribed amount of the topical steroids you’re already using. Or she might try a different topical steroid, depending on the severity of the flare-up, your medical history, any medications you’re currently taking.

Take Care to Stop the Flare

Irritants (soap, detergents, shower gels and other bath products) can aggravate lichen sclerosus, so be very careful when choosing any products that come in contact with your skin. Our body wash for women is fragrance-free and ultra-gentle.

Friction or damage to the skin can cause flare-ups, so be very gentle when washing and drying the impacted areas. 

Pelvic health is important. Urine leaks can cause irritation and possibly lead to a flare-up. So tenderly but thoroughly wipe after urinating, using good soft toilet tissue.

We know you’re likely a little freaked out. Here are two pieces of good news: You cannot give someone LS and studies show that it’s not likely to spread beyond the area where it initially appeared.

Still, we get it. If you’re concerned you may have developed lichen sclerosus, don’t wait to contact your OB/GYN. The sooner the condition is caught and treatment begins, the better. Yes, it’s chronic, and yes, it has one of the worst names known to medical science, but it can be managed. Don’t let embarrassment stop you from seeking the medical attention you need. If you’re looking for an ob/gyn who has a particular interest in treating women in menopause, we’ve got you covered. 

Dr. Rebecca Dunsmoor-Su, Gennev’s Director of Health, practices gynecology with a focus on women in midlife and menopause. 

Do you have lichen sclerosus? Were you able to get diagnosed right away? How are you managing the condition? If you’re open to sharing your story, knowing what you experienced could really benefit the Gennev community. Feel free to comment here, or start a thread in our community forums. You can also reach out to us on Gennev’s public Facebook page or in our closed Facebook group

*It is not Gennev’s intention to provide specific medical advice, but rather to provide users with information to better understand their health and their diagnosed disorders. Specific medical advice will not be provided, and Gennev urges you to consult with a qualified physician for diagnosis and for answers to your personal questions.

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