Never heard of lichen sclerosus? You’re not alone. The condition is not one you hear about often. Chalk it up, at least in part, to the fact that lichen sclerosus is rare, according to Yale Medicine.
We’re going to guess that there’s more going on than just the fact that lichen sclerosus is uncommon, though: It’s also that, due to the nature of the condition and the areas it typically affects, there may be a bit of shame and stigma involved.
According to the Mayo Clinic, lichen sclerosus typically affects the genital and anal areas — which might explain why people rarely talk about this condition.
The unfortunate reality is, women are always discouraged from talking about their intimate health candidly, and that’s why so many conditions like lichen sclerosus don’t get the kind of attention they deserve.
While lichen sclerosus can affect people of any gender, women are more commonly affected. Of course, discussion of issues that affect the genital and anal areas sadly still carry a level of shame for men, women, and non-binary people alike, but women’s health issues are especially shrouded in shame. That leaves many women suffering this and other conditions that affect their bodies in silence.
Talking about these issues is important
Not just for creating a culture of openness around women’s health, but also to help people make sense of their own symptoms and experiences. According to a 2023 paper, lichen sclerosus is an underdiagnosed condition, and we suspect that the stigma around this type of issue plays a real role here.
Talking about issues like lichen sclerosus doesn’t just normalize the issues, it also creates a path of access for people to realize that what they’re experiencing warrants medical attention, helps them orient towards the right person to treat the condition, and gives them a language to discuss the issue with a provider effectively.
While we know that there’s no place for shame around our health (especially when it prevents us from bringing our concerns to a medical provider), we also know that the culture of shame around medical issues leaves people too embarrassed to seek care. The value of people talking about these “shameful” conditions is so powerful — it can give people the boost they need to take care of themselves.
What is lichen sclerosus?
We've established that this issue can be tough to talk about. Now let's get into how it presents. According to the Mayo Clinic, lichen sclerosus causes patches of discolored and very itchy skin. Other symptoms can include itching, soreness, blistering or open sores, or painful sex. As mentioned, these patches often appear around the genitals and anus, but they can appear on the back, shoulders, upper arms, and breasts. In short? If you have really intense itching around the vulval area, it may be a sign of the condition, but lichen sclerosus can appear on other body parts as well.
How do you get lichen sclerosus?
You may see these telltale patches or feel the discomfort and assume it’s a sexually transmitted disease, but lichen sclerosus is actually not communicable.
This brings us to the cause of lichen sclerosus, which is…
Still a question mark.
The cause of lichen sclerosus is unknown, which is the frustrating reality of so many conditions that commonly affect women. Skin damage, genetic makeup, and an overactive immune system may be factors here, though.
Who is at risk for lichen sclerosus?
While the exact cause of lichen sclerosus is unknown, some risk factors have been identified. Per the Mayo Clinic, people more at risk for the condition include postmenopausal women, children under ten years old, women who have autoimmune diseases, men who are uncircumcised, and people with family histories of the condition.
The condition can cause complications, from constipation (which is common in children with lichen sclerosus) to painful sex.
The good news? Lichen sclerosus is treatable.
Applying an ointment to patches can return the skin’s typical color and reduce the risk of scarring. Unfortunately, the condition does tend to recur, so people who have it will probably have to repeat this treatment during relapses.
People with lichen sclerosus should see their doctor regularly to keep the condition under control. While the condition can be treated, the main hurdle for many people will be actually seeking out that treatment, or even identifying those symptoms as worrisome and abnormal.
Because we so rarely talk about these issues, people don’t have a great frame of what’s “normal” and what’s not.
Our rule of thumb? If it’s concerning, painful, or highly uncomfortable, it’s probably worth at least mentioning to your doctor. There’s this narrative that women have to suffer because “it’s normal” Here’s your permission to break up with that idea: You don’t have to suffer through anything in silence, so if you’re experiencing any of these issues, have a conversation with a medical provider.
Owning the conversation
Celebrities have done wonders in normalizing women’s health issues, but this is something we haven't seen a lot of famous women discussing. Even on social media, there’s great expert advice, but not many real-life testimonials from people who are experiencing this condition.
But here’s what we do know: People are thinking about lichen sclerosus, even if they're not talking about it. Search data indicates that lots of people are looking up the condition, which makes us even more certain that it’s a condition that is being suffered in silence.
Speaking of the social media conversation, some doctors are using platforms to bring more awareness to lichen sclerosus — not just for the general public, but for the medical community as well.
In one TikTok video, doctor and women’s health advocate Dr. Michela reveals she’s had so many requests to talk about lichen sclerosus before providing some really important information about the condition. “It’s a condition that to be fair we don’t know that much about, and it’s one that there’s not enough awareness about — so women often suffer for years and years and years with this chronic, debilitating vulval itch before they actually get a diagnosis,” says Dr. Michela.
The dangerous possibility of leaving this untreated
Dr. Michela goes on to mention that in rare cases, lichen sclerosus can lead to vulval cancer, which is why it’s so important the condition is diagnosed, treated, and properly monitored. While we still don’t know what causes lichen sclerosus, the expert says some schools of thought believe it is an autoimmune condition.
“This does also rely on the doctor being aware of the condition and thinking about it,” says Dr. Michela of being diagnosed accurately. “Most doctors, particularly those that specialize in women’s health, should have it at the forefront of their minds.”
Of course, doctors are human and can miss things or not consider certain causes, which is why it’s so important for women to understand these issues and be able to directly voice their concerns related to them. Advocacy can save lives, but without awareness, it’s not possible. That’s why we need to keep talking about issues like lichen sclerosus, regardless of how “taboo” the world tries to convince us they are.
Zara Hanawalt is a freelance journalist and mom of twins. She's written for outlets like Vogue, Parents, MarieClaire, Elle, Cosmopolitan, Motherly, and many others. In her (admittedly limited!) free time, she enjoys cooking, reading, trying new restaurants, and traveling with her family.