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Intro and Some Exciting New Announcements!
Welcome to the fifth episode of Season 2 of Lichen Sclerosus Podcast! Today we are continuing Jaclyn’s story. In last week’s episode, we discussed the beginning of Jaclyn’s journey with Lichen Sclerosus. Early in her journey, Jaclyn experienced painful sex and a lot of fear and anxiety concerning her body and her future. Despite having a sex therapist, a pelvic floor physiotherapist, and compassionate friends and family, she still felt very alone in her diagnosis. She longed for a community where she could find support and support others.
In today’s episode, Jaclyn shares how she found community, connection, and friendship with others who had Lichen Sclerosus. She also shares her journey from painful sex to pain-free, pleasurable sex.
Before we jump into part two of her story, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring even more information, education, and most importantly support to all you Lichen Sclerosus warriors out there.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN!
Finally Seeing the Gynecologist
9 months Alone with No Community to Turn To
Jaclyn was diagnosed with Lichen Sclerosus by her general physician via a clinical examination. After this examination, Jaclyn was referred to a gynecologist as her specialist. Initially, Jaclyn was excited to finally get some answers. However, this excitement soon turned to despair and anxiety when she learned the wait time for this specialist was 9 months.
That is a long time to sit alone with a scary, incurable disease. It is a long time to wait with no answers and no understanding of the disease, what it entails, and how to properly manage it.
And listen, if you are out there in a similar place, please check out this podcast episode for information on how to properly use your steroids.
During those 9 months, Jaclyn’s anxiety intensified. Perhaps the biggest factor underlying her anxiety was uncertainty and the unknown. She didn’t know what she could and could not do. Jaclyn didn’t understand what was happening to her, or how the disease progressed. Furthermore, she didn’t know how she should be using her steroids or what to do if/when she tore.
Finally Getting Some Answers
Unsurprisingly, by the time her appointment came, Jaclyn said she had written down about 40 questions. She had so much pent-up fear and anxiety, she cried in the waiting room as she waited to be called in.
When she was called into the room, she was crying and shaking so hard. The nurse was incredibly compassionate. She played with her hair and dabbed under Jaclyn’s eyes with Kleenex the whole time she cried.
Her gynecologist was equally as compassionate. He was incredibly calm and took the time to answer every question she had. During the examination, he was incredibly gentle with her.
He encouraged Jaclyn to continue everything she loved doing before Lichen Sclerosus. He maintained while Lichen Sclerosus isn’t curable, it can be managed, and you don’t have to stop doing anything you love doing. At most, you just may need to modify a few things. He told her to continue swimming, exercising, and having sex.
Because Jaclyn didn’t have a community to go to for answers, she didn’t know how to use her steroids and had been using them daily for 9 months. Her gynecologist immediately put her on a maintenance protocol: twice a week, on Mondays and Thursdays.
Beginning to Take Back Her Life
Jaclyn felt more confident after getting answers to her questions, and, moreover, felt empowered to start bringing back parts of her life she enjoyed but had cut out.
For example, Jaclyn was deep in the fitness community: an avid bodybuilder, she loved nothing more than lifting weights at the gym, doing pilates, yoga, and HIIT. However, when she was diagnosed with Lichen Sclerosus, she didn’t think she could do this anymore and stopped exercising altogether. Obviously, this harmed her mental health as this was not only one of her passions but her main avenue for stress relief.
Critically, Jaclyn didn’t bring everything all back at once. She slowly integrated one thing back at a time, at a pace that felt right for where she was mentally and physically. For instance, she began taking thirty-minute walks and would add on another 15 minutes each week. Similarly, with weightlifting, she began with upper body workouts first, before incorporating legs, and high-intensity workouts that would have her sweating a lot.
The Missing Link: Community
With proper steroid use, patience, and time, Jaclyn went into remission. She had created a strong team for her Lichen Sclerosus. This team was comprised of her general physician, her gynecologist, sex therapist, pelvic floor physiotherapist, her husband, friends, family, and, of course, herself. Nonetheless, Jaclyn still felt something was missing.
She was taking active steps to reclaim her life and had gotten into remission, but she was still unable to have pain-free sex and felt that was a critical piece missing from her journey with Lichen Sclerosus. Specifically, she couldn’t shake the feeling of being alone.
Finding Community through the Virtual Meetup
The missing piece, for Jaclyn, was community. Importantly, early in her journey, she had tried a couple of Facebook groups and forums. Unfortunately, these were not a good fit for her and just made her feel worse. Thus, she left those groups and resigned to going through her journey alone.
One day, she stumbled upon the Lichen Sclerosus Podcast. After listening to one of the latest episodes at the time, she heard my call to sign up for a virtual meetup. In these meetups, individuals with Lichen Sclerosus would meet virtually and discuss their diagnosis story, their concerns, ask questions, and give tips/advice.
Not knowing what she was in for, she signed up and met with the first group to do the virtual meetup.
The meetup was a positive experience for Jaclyn. Of course, while she wasn’t happy that others were suffering like she was, she was grateful to be amongst others who understood. She had felt alone for over a year and a half, her head filled with fears specific to Lichen Sclerosus that others couldn’t fully understand. To hear voices and see faces expressing similar stories, experiences, feelings, and emotions, was validating. Through them, she felt seen, heard, and understood. She found her community.
Finding Community through the Lichen Sclerosus Warriors
In addition to attending the virtual meetup, Jaclyn signed up to join the Lichen Sclerosus warriors, a support group off of social media. The Lichen Sclerosus warriors is a platform that includes videos, articles, challenges, interviews, listening parties, etc. Most importantly, however, Lichen Sclerosus warriors are a family; we love and uplift each other, through the good and bad of life with Lichen Sclerosus.
Reclaiming Her Sex Life
As you’ll recall, Jaclyn tried using dilators early in her journey. However, she stopped shortly after as she was experiencing pain and burning. Jaclyn was in remission when she joined the Lichen Sclerosus warriors. The group gave Jaclyn the inspiration she needed to try dilators again and to work towards having penetrative sex. Kathy mentioned a book called Sex Without Pain by Heather Jeffcoat (see link in resources below). Jaclyn devoured her book and shortly after dusted off her dilators and got to work.
For about 3 months Jaclyn followed Heather’s protocol and documented her journey with the Lichen Sclerosus Warriors, providing bi-weekly updates.
After 3 months, Jaclyn decided to go for it.
The First Time After Almost a Year and a Half
Jaclyn and her husband had discussed trying penetrative sex before this. They decided the first few times they would treat the situation almost like he was another dilator. They took the pressure of orgasming off the table.
This is important because, as I note in my podcast on how to have a good relationship with your partner (link here), Lichen Sclerosus doesn’t just happen to you, but your partner as well. It’s just as important you acknowledge their worries and the pressures they may feel.
Jaclyn said that she didn’t feel nervous the first time they tried penetrative sex after almost a year and a half of no penetrative sex. She stated she felt ready; in mind and body, she knew this was the right time and she was confident. To her surprise, there was no pain upon him entering her, and they ended up having amazing, pain-free, pleasurable sex.
Jaclyn cried afterward, but they were happy tears. She couldn’t believe it! Jaclyn didn’t remember a time when sex didn’t hurt; it was at best a bit uncomfortable. When she was diagnosed with Lichen Sclerosus, she thought it was a death sentence to her relationship and her sex life. However, 3 years later, she and her husband are still very much in love and are now able to have pain-free, pleasurable sex.
She also felt proud because she never gave up on their sex life. Jaclyn put in a lot of work to get where she ended up, and she listened to her body the whole way there.
How Community Empowered Jaclyn
To conclude, Jaclyn moved through an incredible journey of feeling alone in anxiety and painful sex to feeling empowered, having a strong community, and reclaiming her sex life.
To my readers/listeners, if you see yourself in parts of Jaclyn’s story – if you feel alone and anxious, if you feel you can never have a healthy relationship or pain-free sex – know that her endpoint can be yours too! With patience, knowledge, a good medical team, community, support, and baby steps, you too can work towards having a healthy relationship with yourself and have pain-free sex.
Did any parts of Jaclyn’s story resonate with you? Let me know! Email me at Kathy@lichensclerosuspodcast or DM me at @lichensclerosuspodcast on Instagram.
Or better yet! Why don’t you join us for our next Lichen Sclerosus virtual meetup and tell us what you thought!
Jaclyn's blog, The Lost Labia Chronicles, is now officially live. To check out the blog and her website, which includes a FREE LS eBook, a blog, YouTube videos, resources, and so much more, click here.
This interview is really just a broad overview of what Jaclyn has been through. In her blog, she goes in-depth, providing the joyful and the painful details of her journey.
Subscribe to Jaclyn's YouTube Channel here – she has videos on LS and mental health, LS and sexual health, and general evidence-based lichen sclerosus information.
Virtual Meetup Information
Do you feel alone and ready to take the plunge and find a community like Jaclyn did? Join us in our virtual meetups!
We meet every other Saturday from 2-4 pm and/or 7-9 pm Eastern Standard Time. This is your opportunity to share your diagnosis story, what is working for you and what isn’t, and ask a question to the group. I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up here for notifications and updates! I cannot wait to meet you!
Heather’s website: https://feminapt.com/ and her Instagram @theladypartspt
Want to buy Heather's book? Buy it here – use code LICHENS20 for 20% for a limited amount of time.
Ready for 24/7 support? Join the waitlist for LS Warriors. A family that understands what you're going through. lssupport.net/lswarriors
To subscribe Jaclyn’s blog, click here.
If you want to learn more about painful sex, tearing, and steroids, read here for more information.
If you want to know how Lichen Sclerosus impacts your libido and how to get it back, listen here.