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How to Exercise with Lichen Sclerosus, Pt. 2

How to Exercise with Lichen Sclerosus, Pt. 2

Introduction

In my last post, I wrote about how my Lichen Sclerosus symptoms impacted my ability to work out (and enjoy it). Furthermore, I noted I stopped exercising altogether after I was diagnosed with Lichen Sclerosus. If you haven’t read the post yet, you can do so here. In this post, I highlight important things I learned about Lichen Sclerosus and exercise and provide a checklist and some guidance on how to re-incorporate movement and exercise back into your life.

Don’t forget to read until the end for this post’s #TLLCTuesdayTip!

Why I Stopped Exercising After My LS Diagnosis

As mentioned in my last post, because I was tearing and had fissures on my vulva, certain poses and movements increased my pain and discomfort. Consequently, the increase in pain discouraged me from being physically active. I mean, why would you want to continue an activity that causes pain and distress? Accordingly, I began exercising less and less.

Finally, when I received my diagnosis, I decided to stop exercising. The decision went beyond the gym. I didn’t just stop weightlifting or doing hot yoga, I even stopped my daily walks. In fact, I tried to be as sedentary as humanly possible. In hindsight, this seems extreme, but this is often how my anxiety manifests; I act/think in a world of extremes. 

Critically, I did not fully understand my diagnosis and what it meant. At the time, I was giving little information besides it being an autoimmune condition and it is managed with topical corticosteroids. Accordingly, much of how I proceeded to act post-diagnosis was fueled by a lack of information/knowledge about Lichen Sclerosus.

The Confused Train of Thought that Led to my Completely Stopping All Exercise

My thought process looked a bit like this: I have pain, stinging, burning, and fissures on my vulva. Most exercise involves movement such that there will be friction in that area. If that area has fissures, tears, and/or is irritated, friction will undoubtedly make it worse. Therefore, according to this, I will refrain as much as possible from exercise and movement.

As I mentioned earlier, I took this train of thought to the extreme. Not only did I stop exercising, including daily walks, I even tried to limit how much I walked in my apartment. And y’all, I live in Toronto, so my apartment is NOT big. 

Image of a person lying in bed. This represents my shift to a very sedentary life after cutting out exercise after my Lichen Sclerosus diagnosis.

Of course, this harmed my mental health. First, exercise had been my main form of stress and anxiety management for years. Second, exercise made me happy; it was my passion, and that had now been ripped away from me because of this disease. Third, I was in pain, confused, scared, and miserable, and lying around really wasn’t helping because all I did was fixate on this.

What I Learned from the Experts about Exercise

When I finally saw my gynecologist, 9 months after I had been diagnosed, I got to ask my lifestyle-related questions that I couldn’t find answers to anywhere on the internet.

“Can I exercise with Lichen Sclerosus”?
“Are there any activities I should completely refrain from”?
“Can I swim with Lichen Sclerosus or will the chlorine from the pool irritate my vulva”?

These were some of the many questions I asked him that morning.

Briefly, to my surprise, he encouraged exercise; he claimed it was very healthy and important to exercise regularly. He comforted me and let me know I don’t need to stop doing anything because of Lichen Sclerosus. Instead, I just need to learn how to modify some things according to my body and where I am at.

Learning to Modify Exercise Instead of Abstain

For example, if I wanted to go swimming, instead of just putting on my swimsuit, diving in, lounging around the deck all day, and eventually changing, he gave me the following instructions. Before putting on your swimsuit, put on your emollient (in my case, he suggested coconut oil). After you are done swimming, limit the time spent in the wet swimsuit. When you change out of your swimsuit, rinse in the shower, re-apply your emollient, and just continue to use your steroid protocol as you normally would.

Image of a pool, representing the desire for exercise through swimming.

Concerning exercise in general, my gynecologist told me most exercises are fair game, but to move mindfully. Instead of simply grabbing two 20s and doing a bunch of walking lunges, do some bodyweight lunges first to see how it feels. If you feel good, go for it, if not, maybe try the machines or something that doesn’t stretch so much, but listen to your body. Similarly, he said some people with vulvas experience pain if they use a bicycle, and again, to be mindful of that. Perhaps I might need to look into purchasing a special bike seat or do a spin class hovering over the seat.

Finally, if you are in a flare, you might want to wait a bit until things settle a bit. However, he still encouraged some gentle stretching, yoga, and walking (just not speed-walking) during this time.

What I Took Away from this Visit

Here are some important lessons I learned from this visit:

First, you do not have to live in a world of extremes with Lichen Sclerosus. That is, you do not have to completely refrain from all movement, and similarly, you might not want to throw yourself into over-exercising and ignoring your body's signs.

Second, mindfulness is key. Do not exercise frivolously; be mindful of your body and what it tells you when you move in certain ways. If it feels good, continue. If it feels bad, listen, respect, and honor your body by backing off. Backing off can look like modifying the exercise, or skipping it altogether that day and doing another form of exercise.

Third, and relatedly, if you are in a flare, gentle movement is key. Instead of running, HIIT, or an intense CrossFit workout, try a Pilates or yoga class to gently stretch and move the body, again, being mindful and sitting out certain poses that aggravate your Lichen Sclerosus. For example, a happy baby is a wonderful hip opener and great for the pelvic floor. However, if you have an active tear on your vulva, stretching open that area may not be the best idea. Instead, go into a modified child’s pose or another pose that is safe for your body and feels good.

Image of a person sitting cross legged, captured in the middle of a slow and gentle stretch, representing mindful movement.

How to Re-incorporate Exercise and Movement Back Into Your Lifestyle

I will now provide a checklist for re-incorporating exercise and movement back into your life. But first, a disclaimer: this list is meant more as a general set of guidelines for you to modify in a way that resonates with you and matches where you are at. You are not required to follow through on exactly what I lay out in order to find success. 

Furthermore, this list is based on real-life experience and what worked for me. Accordingly, it may not work or resonate with you. Please feel free to modify in a way that works for you. Lichen Sclerosus is an individualized disease and we are all in different places in our journey. Please reach out to me if you want to discuss this further.

OK, now to the list!

Checklist for Re-incorporate Exercise and Movement Back Into Your Lifestyle

  1. Write down your goals. For instance, what exercises would you like to do? What kind of workouts is important to you?
  2. Acknowledge where you are. Write down on a piece of paper the date, and where you are with your Lichen Sclerosus. For example, were you just diagnosed, are you in a flare (if so, what are your symptoms), are you in remission, etc?
  3. Assess where you are mentally, and, importantly, be honest with yourself. Are you feeling anxious about working out again? Do you feel ready? 
  4. Put the pieces together. Look at your goal and create a plan of attack based on where you are at physically and mentally.

Putting the Checklist into Practice

As an example of how this would look in practice, I will tell my own experience about bringing exercise back into my life. 

Acknowledge Your Goals as well as Where You Are At

My exercise goals were to be able to lift weights and take daily walks. At the time I made this goal, I wasn’t in full remission, but my symptoms were very mild, and I had no tears/fissures. Mentally, however, I was very nervous about getting back into working out, despite my gynecologist giving me the go-ahead. I was scared that I could tear from it or it would start a new flare. Thus, to honor both my physical and my mental state, I decided to work my way back to exercise slowly.

For example, with walking, I started with a 15-minute walk. I made sure to use my emollient before and would do a walk around my neighborhood. I would do this for one week and re-assess. If I felt good, I’d add another 10-15 minutes on. I’d slowly increase the time/pace over weeks, making sure to move mindfully and check in with how my body reacted. Within a month, I was back to my regular daily 45-60 minute walks and have been ever since.

Image of person walking outdoors, representing the small walks I would take in the beginning of my journey as I gradually worked my way up.

I used a similar baby steps approach with weightlifting. I went back to the gym and began working my upper body first. Consequently, focusing on upper body workouts meant I was minimizing friction to the vulvar area. Once I got comfortable with that, my confidence grew, and I would do leg workouts but use the seated leg machines (minimizing friction). From there, I’d do an 80% upper body workout, and 20% lower body workout, slowly increasing the percentage of lower bodywork until I felt comfortable bringing it back altogether. Each time I made a change I would assess how my body felt during and after. I’d also journal my emotional reaction to the process.

Conclusion

For me, slow and steady was the key. Knowing where I wanted to be, having a plan that was safe and matched where I was physically and mentally was deeply important and healing. Happily, I can now say that I exercise almost every deal and am so grateful for this.

In sum, by learning more about the disease I have, and empowering myself with that knowledge, I got to a point where I felt comfortable bringing back aspects of my life that I previously cut out because of Lichen Sclerosus. In particular, I re-integrated exercise into my life by writing down my goals, being mindful of my current physical and mental state, and taking slow, planned, and actionable steps towards those goals.

Be sure to bookmark this page for the checklist and real-life examples if you found this helpful!

Get In Touch with Me; Share Your Thoughts!

Has Lichen Sclerosus impacted the way you exercise? What are things you stopped doing after getting diagnosed with Lichen Sclerosus? Let me know in the comments below or feel free to contact me via social media. I would love to hear from you!

Instagram: @thelostlabiachronicles

Facebook: @TheLostLabiaChronicles

Email: lostlabiachronicles@gmail.com or lostlabia@lssupport.net

#TLLCTuesdayTip: Bookmark this page and start to work on your version of the checklist so that you can re-introduce movement back into your life.

By Jaclyn

I am the author of The Lost Labia Chronicles, a blog about Lichen Sclerosus, Sex, and Mental Health. I was diagnosed with Lichen Sclerosus in 2019 but had been symptomatic for over a decade. My mission is to provide support and hope to others with Lichen Sclerosus.

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