Who gets lichen sclerosus?

My neighbour runs a day home for before and after kindergarten care. Yesterday, while I chatted with her in the spring sunshine on the front lawn, one of her young girls approached us in tears. Apparently, the other girls told her they would never play with her again.

My reaction would’ve been to march up to the girls with a “be kind, that wasn’t nice, get along, apologize…” sermon because I typically want to fix things. The quicker, the better.

My neighbour, however, took a knee on the damp grass and perched this little girl on her other knee. She hugged her and asked how that made her feel and if she believed what the girls told her was true. Then she took her by the hand and led her to the girls, saying how it was important that they understood how they’d hurt her feelings with their words. This is why my neighbour runs a day home and not me ;).

As we nodded our goodbyes, I mouthed, “You’re really good with them.”

It’s hard to be present with pain. It’s challenging to take a knee with discomfort. I dare say that it’s a practice to bear witness to suffering. When told we have an illness or autoimmune condition like LS, we want to fix it. Now. I know I did.

But there’s grace in understanding this condition and an opportunity for healing more than LS when we can be present to everything we feel along this journey and curious as to how we can proceed with patience, love and kindness. Towards ourselves and others.

Photo by Cliff Booth on Pexels.com

No, it’s not your fault. You didn’t do anything wrong. In What causes lichen sclerosus?, we’ll look at the potential causes of LS. It’s not contagious and it’s definitely not sexually transmitted (we focus on vulvar LS here). What’s fascinating about LS is that at first glance it seems like a menopause-related condition. Not so.

As I mentioned in yesterday’s post (What is lichen sclerosus?):

Lichen sclerosus is a chronic inflammatory skin disorder that most commonly affects women before puberty or after menopause. Although rare, it can also be seen in men. When found in males, the disease is known as balanitis xerotica obliterans.1

(raredisease.org)

You’ll probably see references to the term rare a lot. I don’t know if I’m in agreement with this classification. Yes, I’d never heard of LS until I went looking for my symptoms, however, a lot of women are surfacing with this diagnosis. So I checked on the criteria for this label. Here’s what genome.gov has to say:

A rare disease is generally considered to be a disease that affects fewer than 200,000 people in the United States at any given time. 2

That could be true. I suspect, however, it is rare because it is misdiagnosed. In an online menopause group, a member complained of pain with sex and “my vagina is closing”. While many members jumped in with links to vaginal atrophy and “It’s normal in menopause”, I was reminded of when my doctor misdiagnosed me. There’s ignorance around LS because it is little-known and because it is often awkward to discuss with others, including your doctor. That’s changing. Thanks to all of the women (and men) who are speaking up and sharing their experiences and wisdom.


So, who gets lichen sclerosus?

I did all the ‘right’ things and still ended up with a diagnosis of LS. Within our online communities, there are women from all over the world, of different shapes, sizes, ages, diets, backgrounds, lifestyles and states of health. We all keep searching for a common denominator.

I initially assumed it was menopause until I learned that there are 3 year-olds and 7 year-olds with LS. Then I assumed it resolved during puberty, reemerging in menopause (and I believe this is often the case). However, there are women in their 20s and 30s, pregnant, nursing, married, single… again, all walks of life. While the majority of cases are women aged 40-60, LS is not due to menopause.

The stats say that 1 in 300 to 1 in 1000 females are diagnosed with LS, though my GYN says it’s probably closer to 1 in 100. So, if you have a diagnosis of LS, welcome to our community. You are in excellent company. We should have t-shirts made. Better yet, underwear… that double as ice packs, infused with herbal oils!

I know you want to fix LS. Trust me, we all do. And through the next 28 posts, I’m going to cover as much as I can to help you. Right now, consider LS that small girl in tears with hurt feelings. Bring all the love, understanding and patience you can summon for her.

Much love,

Stephanie

Read the next post in the series: What are the symptoms of lichen sclerosus?

And make sure to pick up your copy of the most recently published book on LS! Get it now from Amazon worldwide.

**This blog is meant to inform, not diagnose or treat specific health conditions. It is not a substitute for professional medical advice, diagnosis and treatment. Always consult your doctor or health care practitioner.


1 https://rarediseases.org/rare-diseases/lichen-sclerosus/

2 https://www.genome.gov/FAQ/Rare-Diseases#:~:text=A%20rare%20disease%20is%20generally,million%20to%2030%20million%20Americans.

3 thoughts on “Who gets lichen sclerosus?

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