Welcome to my blog page where I will be writing about my experiences with Lichen Sclerosus!
So, here is the deal: my labia minora has been MIA since the summer of 2019.
My labia never played a huge role in my life until that point, but when she disappeared, she became one of the main characters. After I lost her, I became obsessed; I questioned “where did she go”, “why did she vanish into thin air”, and “how and why is this happening to me”. Before summer 2019, I never gave her much thought, she was not on my radar at all.
Let’s go back to the beginning!
Who am I and Why Am I Rambling on About My Labia, Anyway?
Hi, I’m Jaclyn, and in May 2019, I was diagnosed with Lichen Sclerosus after years of being dismissed by medical professionals and/or being misdiagnosed.
Lying on the exam table in 2019, my general physician took one look at me and immediately exclaimed, “Oh! You have Lichen Sclerosus”.
Lichen Sclerosus: a term that haunted me the first year of my journey.
Afterwards, she brought me into her office and briefly explained it was an auto-immune condition most seen in post-menopausal individuals and that there might be a genetic component.
If you are not familiar with Lichen Sclerosus, it is considered an auto-immune disease at the intersection of dermatology (it affects the skin) and gynecology (it affects the genitals). Symptoms for people with vulvas include: painful sex, tearing during sex, severe and chronic itching, fissures, burning, aching, skin discoloration, fusing, as well as changes to the vulvar anatomy.
I barely remember what she told me that day. Part of me felt relief; I had a name; more importantly, I finally had a diagnosis. This was not all in my head like I was led to believe. As a result, a part of me felt liberated.
However, that relief was paired with a sinking feeling. Obviously, I was overwhelmed by fear and confusion. Furthermore, I had no idea what this meant for my future because I didn't understand what having Lichen Sclerosus meant.
My Best Friend: Google
Of course, my doctor provided me with very little information. Consequently, I went home to my trusty friend, Google. To say that I was horrified is an understatement. Especially since the majority of what I read were horror stories about severe fusing and lost anatomy, women unable to have penetrative sex, vulvar cancer, chronic pain, symptoms worsening over time; the list went on. Most importantly, I believed their stories would become my own as well. And this caused me significant helplessness and anxiety.
The First Time I Really “Looked” Down There
When I finally looked at myself down there I felt like someone punched me in the stomach. I was in complete shock. The skin on my vulva was discolored and my labia minora had begun to fuse to my labia majora. A couple months later I was completely fused and lost most of my labia minora (three quarters of it are now re-absorbed).
I wish I had listened to Kathy's podcast episode on how to check your vulva sooner. I probably wouldn't have felt so alone and confused for so long.
*Read or listen to that episode here!
I thought I would never have penetrative sex again, nor be able to swim or exercise again.
As a result, I was terrified of my Lichen Sclerosus developing into vulvar cancer. In that moment, my future looked bleak.
Furthermore, I felt ashamed, I was disgusted with myself, and I was mad at myself for not noticing the changes sooner and advocating harder. I felt like a failure, like my life was over.
Confused and completely alone, I suffered for months.
But things got better.
Where am I Now?
I am in remission and have been for 9 months. For me, remission means my skin pigmentation has returned to normal. I have no fissures, tears, pain, itching, stinging, or burning and my anatomy has stopped changing. I’ve lost the majority of my labia minora and my clitoral hood has fused over my clitoris, but I still have sexual function and I am able to orgasm.
Most importantly, I have come to a place of acceptance and love for my myself and my vulva. I love my labia, fused and all.
On the positive side, I am no longer alone. Finding the Lichen Sclerosus Podcast and joining the virtual meetup I met tons of women with Lichen Sclerosus who had similar stories. I finally felt seen and heard, and still do!. I found my community, and these amazing Lichen Sclerosus Warriors continue to support me to this day.
*To join us and meet others with Lichen Sclerosus, click here. We’d love to meet you, hear your story, and help address any questions or worries you have.
Why Did I Start The Lost Labia Chronicles?
I have always loved to write and have wanted to start a Lichen Sclerosus blog for some time, but I had no idea how or where to begin. Obviously, when I was offered my own page and be a part of the Lichen Sclerosus Support Network, I jumped on the opportunity!
As a result, I created The Lost Labia Chronicles as a way to share my journey and my experience, helping me find purpose in my pain. I write in the hope that I can offer solace and comfort to others who are alone, struggling with fear and anxiety like I was.
My wish is in reading about my experiences, you can start working through your own fears and anxieties surrounding Lichen Sclerosus. That is to say, I hope you find inspiration and hope in my story, knowing you can still live a fulfilling life with Lichen Sclerosus.
By sharing my journey, I also want to normalize conversations about vulvas and sexual health, as well as raise more awareness about this disease.
What I Will be Blogging About?
I will blog about my experiences with Lichen Sclerosus through a variety of lenses;
- Lichen Sclerosus, sex, and sexual health;
- Lichen Sclerosus and mental health – with emphasis on fear and anxiety;
- Lichen Sclerosus and trauma;
- Lichen Sclerosus and acceptance;
- Retrospective Musings: things I’ve discovered on my journey with Lichen Sclerosus;
- Lichen Sclerosus and fitness;
- And of course, my labia!
What to Expect?
First, you can expect to read about some very raw and vulnerable moments I experienced on my Lichen Sclerosus journey. Second, you'll realize I do not have a filter. My aim is to be as honest and transparent as possible. Third, in The Lost Labia Chronicles I will share my wins and my loses, as well as my joyful and anxious moments. Finally, you can expect some to-be-continued pieces. Many of my stories may have separate but connected blog posts.
I believe through shared experiences we can learn, grow, and become empowered reclaim our lives and find a place of acceptance, self-compassion, and self-love, wherever we might be on our own journeys.
Thus, my wish is by sharing my journey of confusion, pain, grief, and acceptance, I can inspire you and fill you with hope so that you too can find acceptance and joy in your life with Lichen Sclerosus.
Last but not least, thank you so much for reading. I will be posting every other Tuesday (twice a month) and I look forward to embarking on this journey with you. Starting with my next post, I will begin sharing a #TLLCTuesdayTip at the end of each post, wherein I share a Lichen Sclerosus related tip. Stay tuned for March 16th for my next post!
In sum, I would love to hear from you!
Do you suffer from Lichen Sclerosus? Do you think you might suffer from it? What are your fears and concerns? Let me know in the comments down below!
Please feel free to contact me in the comment section below, or through social media: