In my last post, I discussed using dilators for the first time (click here to read). For example, I touched on how dilators help create space in the vagina and reduce pain during sex, what to expect while using dilators with your physiotherapist, and strategies to relax the pelvic floor. While I experienced some success with dilators initially, this was short-lived. Shortly after, I experienced burning and pain while using the dilators. Consequently, I stopped using them for a while. In this post, I discuss why I stopped using them and what I would have done differently in retrospect.
Don’t forget to read until the end for this post’s #TLLCTuesdayTip!
Why I Stopped Using Dilators
Despite initial success with dilators in pelvic floor physiotherapy, I stopped using them shortly after. This is because I started to experience burning while using them. After I used them, I would get stinging pain as if I had paper cuts on my vulva and someone put rubbing alcohol on them. Since this continued each time I would try to use them, I eventually set them aside and told myself, “the time isn’t right, you’ll try again in the future”.
Critically, I wasn’t resigning completely, but I was going to take a step back from the dilators. I didn’t give myself a timeline. For example, I didn’t say, “I’ll stop for 3 months and then try again”. It was an indefinite pause; I knew I would try them again, but I didn’t know when. And that was OK.
Listening to and Prioritizing Your Body
Putting the dilators on pause was a defining moment in my Lichen Sclerosus journey. When you have a chronic condition, you often feel like your body is letting you down. You may think your body is broken and you may be angry at it for not working like you think it should. Accordingly, when you have this relationship with your body, it is hard to show love to your body.
Understandably, I felt a lot of disappointment and hatred towards my body for letting me down.
“Why can’t I just have penetrative sex without my vulva tearing and having to deal with stinging, searing, and burning pain for days after” I wondered.
Despite experiencing negative feelings and emotions towards my body, when I decided to stop using the dilators, I listened to my body. My body told me we weren’t ready for the dilators; it told me I needed to dial back and let things settle first.
Critically, listening to and prioritizing your body is an act of self-love and self-compassion. Moreover, it was a radical act of self-love because despite feeling angry at my body for what I perceived as its letting me down, I listened to what it was saying and showed it grace. I respected what my body needed, even though I felt resentment towards it at the time.
If you have ever listened to and prioritized your body, despite feeling anger towards it for letting you down, take a moment to acknowledge the strength that took. Befriending your body when you are in pain and feel betrayed by it is difficult but critical for healing. And if you aren’t there yet, don’t worry. We are all at different points in our journeys; to get here, you must first allow yourself to sit with feelings of anger, disappointment, etc.
Retrospective Learnings: What I Would Have Done Differently With Dilators
Looking back, with the knowledge I have now, I understand why my first attempt with dilators inevitably came to a halt.
Importantly, when I started the dilators, I was newly diagnosed. My Lichen Sclerosus was pretty severe, as you might expect from someone who was symptomatic but not diagnosed and treated for over a decade. When I started my dilator journey, I had only been using my steroids for 3 weeks, and, importantly, I wasn’t using my steroids properly.
*For advice on how to use your steroids properly, click here:
Accordingly, when I was using the dilators I did not have my Lichen Sclerosus under control.
In retrospect, if I could go back, I wouldn’t have rushed the process. I was so desperate to get my sex life back that I didn’t allow my body the time to heal first. Ideally, I would have started pelvic floor physiotherapy, but solely with the focus on learning to relax my pelvic floor muscles. Critically, I would have waited and allowed the steroids to work their magic and get my Lichen Sclerosus under control before using dilators.
Key Information from a Medical Expert
Importantly, while everyone is different, Dr. Krapf notes people with vulvas can take approximately 3 months of consistent steroid use to really feel significant relief (link here). This time is not guaranteed, for some it may happen sooner, for others later, depending on a variety of factors such as the type and strength of the steroid, the severity of the Lichen Sclerosus, your stress levels, other comorbidities, etc.
In my case, I had only been using my steroids (and using them improperly, I should note) for 3 weeks before trying to use dilators. This was nowhere near enough time to allow my body to settle and heal.
Advice on Using Dilators if you Have Lichen Sclerosus
- Make sure you aren’t in an active flare.
- Listen to your body; if it’s telling you you aren’t ready or need a break, listen and honor this.
- Try to find a pelvic floor physiotherapist to instruct you on how to use the dilators.
- Similarly, purchase a guide to help you learn how to properly use your dilators. I highly recommend Heather Jeffcoat’s book Sex Without Pain (link in the resource section below).
- Be gentle and don’t rush the process; it will take the time it takes.
- Find a lube that doesn’t irritate you and use a lot of it.
- Practice self-care afterward, regardless of whether it hurts.
- Step back if your body isn't ready.
What Inspired Me To Start Using Dilators Again
Once I stopped using dilators, it took me a while to pick them back up again. In fact, it was about a year and a half. During this time, I worked on my mental health and vulvar dysmorphia with my sex therapist and used my steroids on a maintenance schedule every Monday and Thursday. I focused on non-penetrative sex and intimacy with my husband and began exercising again.
I started feeling significantly better after 3-4 months, and eventually went into remission. Despite being in remission, I still didn’t pick the dilators back up until November 2021.
What happened in November?
Well, I found Lichen Sclerosus Podcast. After listening to the latest episode at the time, Kathy (the host) announced a virtual meetup for individuals with Lichen Sclerosus to meet virtually and chat about their experiences with Lichen Sclerosus. I signed up, not knowing what to expect. The meetup was such a validating experience. For the first time in a year and a half, I saw faces of people with Lichen Sclerosus. I related to the pain and worry in their stories. It felt like a huge weight had been lifted off my shoulders; finally, I found a community. To join our Lichen Sclerosus Virtual Meetups, click the button below.
Afterward, I joined the membership Kathy created for us Lichen Sclerosus warriors see the link below to join us. This platform included instructional videos, interviews, listening parties, educational articles, monthly challenges, check-ins, vulva check accountability, and so much more. Kathy recommended Heather Jeffcoat’s book Sex Without Pain: A Self-Treatment Guide To The Sex, and this kind of light a spark in me. I devoured the book in a day and dusted off my dilators. This amazing community and the support they provided gave me the final push to try again. Armed with this new resource, and being in remission, I felt confident I would succeed with her dilator protocol.
To conclude, I stopped using my dilators initially because I was experiencing burning and stinging during and afterward. Looking back, I realize this is because I didn’t allow my body time to heal and for the steroids to start working. Once I stepped back and gave my body space to heal, things slowly started to fall into place. However, it wasn’t until I read Heather Jeffcoat’s book and started using dilators again in November 2021 that I began to see the light at the end of the tunnel.
Some foreshadowing: After I started following Heather Jeffcoat’s dilator protocol, I was able to move through the program successfully, and, critically, was able to enjoy pain-free sex after about 3 months of using her protocol. I will be writing a few posts in the future about this experience, so stay tuned!
Get In Touch with Me; Share Your Thoughts!
Do you use dilators? What has your experience been? Did you struggle with burning and pain using them? Let me know in the comments below or feel free to contact me via social media. I would love to hear from you!
#TLLCTuesdayTip: If you are considering starting dilators, ask yourself: “what do I want to get out of this”? “Am I ready”? Be very honest with yourself. Is your body truly ready or are you just saying yes because you want so desperately to move through the process as quickly as possible so you can have penetrative sex again?
Not sure if you’re ready? Need someone to bounce ideas off and work through this? Talk with a therapist, counselor, or fellow LS warrior! Reach out to me, I’m happy to talk with you about this.
https://www.amazon.ca/Sex-Without-Pain-Self-Treatment-Deserve-ebook/dp/B00K7IH67UHeather’s website: https://feminapt.com/ and her Instagram @theladypartspt