Introduction
Living with vulvar lichen sclerosus (VLS) can feel like losing pieces of yourself. The joy of movement, the comfort of your own body, and the activities you once loved can suddenly feel off-limits or even dangerous. When you’re diagnosed, especially after years of pain and confusion, it can feel like the life you knew is over.
In this deeply personal story, I share my journey through chronic pain, devastating diagnoses, and the long road back to movement and joy. From lying in shavasana, feeling like a prisoner in my own body, to completing 100 fitness classes in leggings, this story is a testament to resilience, hope, and reclaiming your power on your terms.
Whether you’re newly diagnosed or years into living with VLS, I hope this gives you a sense of what’s possible when we give ourselves permission to rest, modify, and rebuild trust in our bodies.
Disclaimers
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A Moment Seared Into My Memory
Some moments never leave you.
I remember walking into Modo Fitness in Etobicoke, Ontario, with my stepmom, ready for hot yoga. Movement has always been part of my identity—from childhood sports like competitive swimming, diving, synchronized swimming, and soccer, to camping adventures filled with hiking, kayaking, and canoeing.
Later in life, I found weightlifting. It became a form of therapy and strength, literally helping me get sober and feel strong again.
Until I got injured.
When the Pain Took Over
A low back injury changed everything. What started as discomfort turned into years of chronic, debilitating pain. Some days, I couldn’t even walk on my own or use the bathroom without help.
Eventually, I advocated for imaging. When the results came in—degenerative disc disease—it felt devastating, but also validating. I wasn’t making it up. And with the diagnosis came more targeted care from my physiotherapist and sports medicine doctor.
I never gave up on movement, even though I had to take long breaks. I modified workouts, took months off when needed, and slowly built my strength back. I got to a point where I could function at about 80% of my pre-injury ability, though I still experience flares that stop me in my tracks.
The Invisible Weight of Chronic Pain and Medication
But back pain wasn’t the only thing limiting my movement.
For years, I dealt with intense orofacial neuropathic pain—requiring high doses of gabapentin, Lyrica, muscle relaxants, and painkillers. These made me feel constantly dizzy, nauseous, and weak. The side effects added another layer of difficulty to staying active.
And still, I moved. Because movement was my anchor. But it was hard. My God, was it hard.
When Joy Turned Into Trauma
Then came the vulvar symptoms—burning, tearing, and intense soreness. They crept up over the years. Every doctor I saw told me I was just stressed or “too Type A.” Their prescription? Yoga and movement. So I added yoga and Pilates to my routine.
I loved them—until they began to betray me.
I’ll never forget the moment I moved from downward dog to low lunge and felt an excruciating tear from my vaginal opening to my perineum. I almost collapsed in pain but forced myself to keep going, blinking back tears.
In a hot yoga class in 2019, I lay in shavasana while the instructor guided us through a body scan. I felt like my body was a foreign, hostile place. I wanted to be anywhere but inside it. My body felt broken and unsafe, like my enemy. I hated it; I deeply resented it.
The Diagnosis That Changed Everything
A few months later, I was diagnosed with vulvar lichen sclerosus (VLS).
It felt like a death sentence. I walked out of the clinic and straight to the pharmacy thinking, I’ll never have sex again. I’ll never work out again. I’ll never wear leggings again.
I stopped moving completely for months.
Even when I started feeling better, I was terrified to move. I didn’t want to cause another tear or flare. I didn’t trust my body anymore–how could I?
Introducing: Oxygen Yoga & Fitness
After a few months had passed, I finally worked up the courage to move my body again (beyond moving from the kitchen to the bedroom). I began very slowly to help rebuild confidence and trust in my body. For example, I started with a walk around the block for a couple of weeks, then moved to a couple of laps, followed by 30 minutes, and eventually an hour. Of course, I was using my treatment plan (topical Clobetasol) and a barrier cream/emollient (Aquafor) in the background of all this. As my confidence grew, I returned to the gym. For the first bit, working just upper body with weights, then the seated leg machines, then standing/walking legs with weights.
Eventually, I discovered Oxygen Yoga & Fitness, a chain of boutique fitness studios across Canada that offer yoga, barre, fusion, and fitness classes—all in infrared-heated studios.
The infrared heat is designed to promote muscle recovery, increase flexibility, and support circulation, while the studio atmosphere is welcoming, empowering, and community-driven.
For someone like me—living with chronic conditions and a body that needs a lot of care—Oxygen became more than just a gym. It became a place where I learned to reconnect with myself. A place where I began to feel pride in my body and its movements, regardless of where it was on the day. It helps me calm my mind and reduce my stress, which has great benefits for living with VLS.
Very grateful to the team, including Suzie & Annie :)
The Milestone I Never Thought I’d Reach
This past Monday, I completed my 100th class at Oxygen Yoga & Fitness. It was a barre class, done while flaring from my degenerative disc disease—poetic, really.
There I was, in actual freaking leggings, sweating, laughing, moving my body joyfully. And after class, lying in shavasana, I realized something huge:
No vulvar fissures.
No burning.
No pain.
As our instructor Annie shared motivational words about honoring your body and celebrating your strength, tears streamed down my face. This wasn’t just a workout milestone—it was a profoundly emotional reclamation of my joy.
Rebuilding Trust in My Body: Movement and Joy
After my diagnosis, I was so afraid that movement would break me again. And sometimes, I did overdo it. Sometimes, I had to stop and rest. But I kept coming back.
I took baby steps. I learned to listen to my body. I modified when I needed to. I gave myself permission to pause.
And slowly, I started to rebuild trust with the body I thought had betrayed me.
A Message of Hope for the Newly Diagnosed
If you’re newly diagnosed with vulvar lichen sclerosus, I know how dark those first days can feel. You may be grieving the life you thought you had. You may feel like your body has turned against you.
But I promise—this isn’t the end.
You can move again.You can feel joy again.You can wear leggings again, if you want to.
Movement may look different now. It may require breaks, modifications, or new routines. But it’s still possible—and it can still feel amazing.
There’s no perfect path, no one-size-fits-all. But you get to write your own story. You get to find what feels good. You get to come home to your body, in your own time, in your own way.
And when you’re ready, joy will be waiting—on the mat, in the gym, or wherever you choose to move.
Conclusion on Reclaiming Movement and Joy After a VLS Diagnosis
Getting diagnosed with vulvar lichen sclerosus felt like a full stop on everything I loved. But over time—and with patience, curiosity, and lots of self-compassion—I realized it didn’t have to be the end. It was the beginning of learning to move differently, feel differently, and trust my body in a whole new way.
If you’re in the early days of your VLS journey and everything feels heavy, I want you to know: there is life after diagnosis. There is movement. There is pleasure. There is joy.
It won’t always be easy. It may not look like it used to. But it’s still yours to reclaim.
Let this be your reminder that you are not broken. You are adaptable. You are worthy of living fully—and on your own terms.
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Reach Out To Me
Whether you are considering booking a support call with me, have a quick question, or want to share something related to my content, you can reach me via:
Email: Jaclyn@lostlabia.com
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