What You Should Know About Lichen Sclerosus

The internet spreads some wild rumors about this skin condition, so let’s start with a reassuring list of all the things lichen sclerosus *isn’t*: an STI, a contagious infection, or, in spite of what search results tell you, a guaranteed path to skin cancer. 

What we *do* know it’s a skin condition that often affects the genital area, causing thin, patchy skin and uncomfortable symptoms ranging from itching to permanent labial scarring and general discomfort below the belt.

It's estimated that your odds of diagnosis are anywhere from 1 in 300 to 1 in 1,000, but because lichen sclerosus falls between dermatology and gynecology, it isn’t heavily studied — which also explains why so many women have a tough time finding reliable information about common signs, symptoms, and treatment options. To get some clear answers, we sought out an expert: Dr. Miriam Pomeranz, a dermatologist at NYU Langone who also runs a vulvar clinic at Bellevue hospital. She walked us through all there is to know about lichen sclerosus, including creating a game plan after you’ve been diagnosed.

What causes lichen sclerosus flare ups

While the root cause of lichen sclerosus is still a bit of a mystery, Dr. Pomeranz says there are a few things we *do* know about what stirs up symptoms. For starters, lichen sclerosus often goes hand in hand with conditions like interstitial cystitis and stress incontinence, and postmenopausal women are at higher risk of having it than other people because lower estrogen levels are also a contributing factor. It’s also generally believed to be an autoimmune condition — upwards of 20 to 30% of women who have it also have an autoimmune disease, though research hasn’t conclusively determined that autoimmune issues are the root cause. No matter what causes lichen sclerosus flare-ups, Dr. Pomeranz says you can work with a health professional to create a successful treatment plan, and make some lifestyle changes to help keep your symptoms in check.

Lichen sclerosus symptoms

Let’s start with the most frightening symptoms first. Labial scarring and clitoral phimosis (when your clitoral hood fuses to your clitoris) are very likely where this condition’s unnerving reputation comes from (some pockets of the internet say lichen sclerosus makes your vulva or vagina “disappear,” but Dr. Pomeranz wants everyone to know that this isn’t actually happening). So, there are some irrefutably unpleasant side effects, but there are also reasons to be optimistic if you get diagnosed. The earlier you notice symptoms, the more easily treatable your condition may be. Symptoms generally include:

• Itching, irritation, or burning sensations in the skin.

• Dry skin that looks like white, patchy marks on your vulva, almost like shiny white tissue paper

• 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.

In spite of seemingly obvious signs, not everyone who has lichen sclerosus ever even notices that they’re scarring or developing a sticky situation down — some women are even caught off guard by the diagnosis at their annual exam. While there's no cure, Dr. Pomeranz says 25% of patients who are treated show no signs by their next gyno visit. The flipside is, of course, that 75% of patients do have some level of permanent scarring or phimosis, but in every case symptom management is usually pretty straightforward:

Treatment options

It requires a prescription from your doctor, but using a corticosteroid cream multiple times a day for several weeks is the go-to treatment for relieving symptoms like itching, burning, and dry skin. Using a vaginal dilator and cream can help you manage vaginal scarring if, for example, the scarring has narrowed the entrance to your vagina (yes, that can also happen!).

Lichen sclerosus diet

Like other autoimmune conditions, there’s a school of thought that claims your diet plays a big role in harming or helping your health. 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. Some studies have suggested that a low-oxalate diet can help reduce lichen sclerosus symptoms in particular. 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. While people with autoimmune conditions are often genetically predisposed, there’s a growing body of research about how diet (particularly Western diets that are often high in salt and processed foods) can trigger and inflame symptoms.

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 menopause has started and pregnancy is off the table—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.

Have you navigated a mystery health condition? How did you find the information you needed? Share in our comments section!