09/18/18

written by Brianna Flaherty

Body Banter

What To Know If You Have Lichen Sclerosus

Spirit of transparency: I’d never heard of lichen sclerosus until about two months ago when a few of you lovely readers started bringing it up in the comments. After a couple hours of research, I found myself in questionable corners of the internet that made me much less optimistic—and much more confused—than I’ve ever been before about a pelvic health condition. With links to skin cancer and clitoral phimosis (essentially, your clitoral hood becoming glued to your clitoris), plus a name that vaguely suggests your vulva is growing algae, you’d *think* the internet would’ve already met the demand for clarity around cause, diagnosis, and treatment options. Since it hasn’t, I called a lichen sclerosus expert: Dr. Miriam Pomeranz, a dermatologist at NYU Langone who also runs a vulvar clinic (!) at Bellevue hospital.

What are the common causes and symptoms?

First, it’s helpful to wrap your head around what lichen sclerosus isn’t: an STD, a contagious skin infection, or a guaranteed path to cancer. It's estimated that your odds of diagnosis are anywhere from 1 in 300 to 1 in 1,000, but because lichen sclerosus is a skin condition that exists in an inconvenient gray area between dermatology and gynecology, it isn’t heavily studied. But Dr. Pomeranz says there are a few things we *do* know about this mystery disease. For one, it’s believed to be an autoimmune condition that translates to a range of symptoms on (and under) your skin, and it’s most common during or after menopause. It can also lead to labial scarring and kind of nightmarish-sounding effects like your labia minora gluing to your labia majora (some pockets of the internet say lichen sclerosus makes your vulva or vagina “disappear,” but I promise that isn’t actually happening). So, there are some irrefutably terrifying outcomes that I can't really sugarcoat, but there are also a lot of reasons to be optimistic if you get diagnosed. Symptoms vary person to person, but they generally include:

  • Itching, irritation, or burning sensations in the skin.
  • Dry skin that looks like white, patchy marks on your vulva.
  • Bruising and tearing, which appears when the skin has thinned and become fragile.
  • White scar tissue, a symptom that, along with itching and burning, can seem really alarming (though white spots are often super treatable). One of the most telling signs of lichen sclerosus is white scar tissue in the shape of a figure-8 around the edges of your vulva and anus.
  • Pain during sex, usually a sign that your skin has thinned and/or a build up of scar tissue has made your vaginal opening tighter and painfully taut.

It sounds wild, but not everyone who has lichen sclerosus ever even notices that they’re scarring or developing a sticky situation down there, which explains why some women are caught off guard by the diagnosis at their annual exam.

Prevention, treatment, and... cures?

Frightening symptoms and less-than-solid medical knowledge aside, Dr. Pomeranz says people who get diagnosed can be optimistic about bouncin’ back, especially if they’re diagnosed early. While there's no cure, she says 25% of patients who are treated usually have no signs at their next gyno visit. The flipside is, of course, that 75% of patients do have permanent scarring or phimosis (I wish there was a cuter way to explain it that didn’t involve the word “glue.” Alas.), but even in those cases symptom management is usually pretty simple:

  • Corticosteroid cream. It requires a prescription from your doctor, but using a corticosteroid cream multiple times a day is the go-to treatment for relieving symptoms like itching, burning, and dry skin. If you have more serious, painful scarring, using a vaginal dilator and cream can help you start to reclaim your bod.
  • Dietary changes. Like other autoimmune conditions, there’s definitely a school of thought that claims you are what you eat. It might be beneficial to start an elimination diet, or cut out foods known to flare other autoimmune conditions that sometimes exist alongside lichen sclerosus, like thyroid disease. Disclaimer: there’s no solid research that definitively shows your diet will improve your condition (but trying to identify any triggers for autoimmune conditions is never a bad game plan.)

Since there’s no known cause, there’s also no known way to prevent lichen sclerosus, but Dr. Pomeranz says nipping it in the bud with regular gyno exams—something it’s a little too easy to stop prioritizing once pregnancy is off the table and menopause has started—is a good first step. She says that, above all, it’s “very important for women to become less shy, and tell their doctors when they’re having itching, or skin lesions, or changes in that area. A lot of patients just decide to suffer in silence because they’re too embarrassed to talk about it.” Moral of the story: don’t hesitate to speak up if you notice any changes in your body, and don’t feel discouraged if you don’t get all the answers the first, second, or third time you talk to your doctor.

-Which health issue(s) should we investigate next?-

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