“The first thing many women notice is the itch,” says Dr. Rebecca Dunsmoor-Su, ob/gyn and genneve Director of Health. “Unfortunately, because of the itch, women are often misdiagnosed as having a yeast infection – sometimes 3 or 4 times – before lichen sclerosus is correctly identified.”

Lichen sclerosus (LS) does affect men and women, children, and younger women, but the group most likely to develop the condition are perimenopausal and post-menopausal women. Because lichen sclerosus is progressive, the sooner it’s caught and treatment begins, the better.

What is lichen sclerosus?

According to Dr. Rebecca, it’s a “dermatologic [skin] condition most commonly seen on the vulva. It can be seen on other areas of the body, but 95 percent of the time, it’s on the vulva. It’s a chronic, progressive inflammation and thinning of the skin of the vulva.”

Symptoms in the early stage include shiny, smooth, white spots that progress into larger patches. The skin is thin and often wrinkles over time. It may crack and bleed easily, and the itching can be quite severe. 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.

What causes lichen sclerosus?

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. “Biopsies of affected tissue show an autoimmune-like response,” says our doc, indicating that the body’s own immune system may be attacking itself by mistake.

Also, 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 contraceptives, for example, or after having a baby.

It 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.

How is lichen sclerosus diagnosed?

Your ob/gyn 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.

This condition affects anywhere from 1 in 30 to 1 in 50 post-menopausal women. Estimates vary because there’s now a growing recognition of the condition, and more women may be coming forward when they start exhibiting symptoms.

How is it treated?

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

  1. Treat the lichen sclerosus with topical steroids such as clobetasol. Dr. Rebecca’s approach is to respond to a flare of symptoms with a flare of steroids, 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 it’s chronic and progressive – you’ll need to continue with treatment for the rest of your life.”
  2. Treat the surrounding genital atrophy. To give patients the best possible treatment, the tissues around the area need to be treated. 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.”

Will it spread?

LS can occur on any part of the skin, but women with vulvar LS don’t tend to see it in other areas. Equally, women who have it somewhere else on their body don’t tend to get it also on the vulva. So, no; it doesn’t appear to spread.

Will my partner be able to tell I have it?

There are visual indications – the vulva looks whitish, and there can be structural changes over time if the vaginal canal begins narrowing. “What’s far more likely is that they’ll notice the woman’s response,” says Dr. Rebecca. “She’s likely to experience more pain with intercourse, so she may tense up, be less willing, and have less lubrication. Partners can’t feel the difference in the tissues, but they can feel the difference in your level of sexual response.”  

What kind of specialist can help me?

If you are concerned you may have developed lichen sclerosus, your first call is to your primary physician or ob/gyn. Ob/gyns generally will be able to diagnose and begin initial treatment, Dr. Rebecca says, so don’t hesitate to start there. Dermatologists don’t tend to specialize in this area, though there may be some who have expertise in conditions common in women of menopausal age.

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.

What can happen if lichen sclerosus isn’t treated?

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

Worse, if untreated, there can be “a loss of vulvar architecture,” says Dr. Rebecca. “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.”

In rare cases, LS can turn into squamous cell carcinoma – cancer of the vulva. “This is less than 5 percent 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.”

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, check out the North American Menopause Society’s list of menopause practitioners.

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 genneve community. Feel free to comment here, or start a thread in our community forums. You can also reach out to us on genneve’s public Facebook page or in our closed Facebook group.

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Shannon Perry

Shannon is a celebrated author and global educator. Whether she’s interviewing a physician or producing a podcast, her appetite for research, facts, and truth culminates in credible health education and programming that women can rely on. An avid runner, cyclist, and climber, Shannon knows a thing or two about thriving in midlife and lives in Seattle with her cat, dog and boyfriend.

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