Why my Lichen Sclerosus Diagnosis Took Over 10 Years

Introduction

Did you know, on average, it takes folks with vulvar lichen sclerosus approximately 5-15 years to get their diagnosis? I know! That is way too long. If you fall into that category, you know just how mentally distressing it can feel to suffer alone without answers for years.

In this post, I reflect on my over 10-year journey to get a diagnosis. I then share why I think it took so long for me to get my diagnosis, including ill-informed doctors, lack of awareness, not knowing my anatomy, and not looking at my vulva.

Suffering Alone with Strange and Distressing Symptoms

I started experiencing pain with sex in my early 20s. It began as mild discomfort but grew in complexity and intensity as the years went by. The discomfort leveled up and turned into full-on pain that presented as burning, stinging, throbbing, etc. I would experience tearing around my perineum and clitoral area during sex.

It made no sense to me. None of my friends ever said anything about sex literally tearing them open; was this not normal?

Normal or not, it was incredibly painful and distressing to me. That was enough to motivate me to visit the doctor's office.

I spent the next ten years in and out of different clinics. As a graduate student, I moved around a lot and never had a family doctor. Unfortunately, this meant I was always seeing a different doctor with each visit. Some doctors simply listened to my symptoms, and others took my history and also examined me.

However, each time, I was told nothing was wrong. Yup, I was “totally fine”, “everything looked great”. Well, I sure didn't feel great. Some doctors told me the pain with sex was probably because my partner's penis was too big or that it was because I was stressed. A couple of them even told me I should try a having glass or two of wine before sex so I could relax.

Getting my Lichen Sclerosus Diagnosis

After I completed my Ph.D., I settled down and found a family doctor. After listening to my symptoms and examining my vulva, she told me I had lichen sclerosus. I had all the signs and symptoms of LS; learn about signs and symptoms here.

Why My Diagnosis Took So Long

Lack of Awareness and Education on the Healthcare Provider Side

Lately, I have been reflecting on why it took me so long to get my diagnosis. I suspect multiple factors played a role in this.

First, I suspect many of my doctors were either ill-informed about the disease or weren’t aware of it.
With respect to the first point, I’ve often been told, “you can’t have lichen sclerosus, you’re too
young”.

However, we know folks of reproductive age can have lichen sclerosus, in addition to prepubescent children and post-menopausal folks (Corazza, Monica, et al. 2021, Krapf et al., 2022, Lee & Fischer, 2018).

With respect to the second point, I also suspect many doctors simply weren't aware of lichen sclerosus. Since it is considered a rare disease, many healthcare providers haven't heard of it. The number of stories I've heard from folks with LS saying their general physician/primary care physician or gynecologist had never heard of LS is high.

I believe more awareness about lichen sclerosus and improved education on vulvar health for healthcare providers will go a long way with respect to getting folks diagnosed earlier.

It's Vulva not Vagina

Another reason I think it took me so long to get my diagnosis was I wasn't using the proper anatomical terms to refer to the area I was experiencing symptoms. For example, I would often go to the doctor saying my vagina burns or my vagina hurts during sex. However, it wasn't my vagina that was in pain, it was my vulva.

For folks who aren't aware, the vulva is the external genitalia that you can see – e.g., the glans clitoris, the clitoral hood, the vestibule, the labia minora and majora, the introitus, perineum, etc. The vagina extends from to vulva to the cervix and is on the inside. So, vulva outside, vagina inside!

Since I was saying that my symptoms were vaginal, I suspect many of my doctors went straight to examining my vagina instead of also looking at my vulva. Of course, you'd think on the way to inspecting the vagina they would have seen my vulva and noticed the scarring, fusing, and whiteness, but no one said a thing.

I suspect a lack of awareness and education on the provider's side and my not using the correct anatomical terms to describe the location of my pain played a big role in my diagnosis taking over 10 years.

What is a Vulva Check?

In addition to not knowing the proper terms for my anatomy, I also wasn't familiar with what I looked like down there. If you read my posts on compulsively vulva checks and avoiding looking at my vulva, you know that prior to my getting diagnosed, I never looked at myself down there.

Growing up, no one in my family spoke about sexual health. And sex education was reduced to “use condoms or you'll get scary STIs”.

Sometimes I wonder if I would have been diagnosed earlier if I was doing vulva checks. Briefly, a vulva check involves you examining your vulva in good lighting with a mirror, checking for any changes in skin color or texture. If I was doing vulva checks, I probably would my vulvar anatomy was changing and the vulvar skin was turning white. Perhaps then if I googled, “whiteness on the vulva with pain and itch” I would have seen the word lichen sclerosus in the search results and then advocated for a biopsy to confirm.

Letting Myself Off the Hook

There was a time when I blamed myself for calling my vulva my vagina and for never examining my vulva. However, in working with my sex therapist, I have since softened and let myself off the hook. I was let down by systems bigger than myself. I did the best I had with the knowledge I had. And that's all we can really do. If you are struggling with feelings of self-blame, you aren't alone; check out this post I did on self-blame here.

Conclusion

In sum, I'm sure there are many reasons why it took me a little over ten years to get my lichen sclerosus diagnosis. Since being diagnosed, I perform regular vulva checks and use the correct terms to describe my anatomy. I also do a lot of work to raise awareness about lichen sclerosus on both the patient and provider sides. Hopefully, together, we can bring down the average 5-15 years wait time for a diagnosis down.

Be sure to subscribe to The Lost Labia Chronicles Newsletter so you don't miss any Lichen Sclerosus YouTube videos, blogs, events, workshops, and ebooks.

Reach Out to Me

If you want to chat with me about biopsies or Lichen Sclerosus, I can be reached at:

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabiachronicles@gmail.com

1:1 Lichen Sclerosus Peer Support Calls with Jaclyn from TLLC

If you are struggling with grief and emotions, feel free to book a 1:1 call with me. Simply click on this link to learn more about lichen sclerosus peer support calls.