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Welcome Back to Another Year of Vulvar Lichen Sclerosus Content

Welcome Back to Another Year of Vulvar Lichen Sclerosus Content

Introduction

Alright, beautiful soul, it’s January 2nd, which marks the start of a new year. To kick off 2024 here at LSSN, I want to share some personal goals and hopes for the year, as well as some studies and clinical trials that are actively recruiting folks with vulvar lichen sclerosus (VLS) who want to get involved in LS research. I’ll also give you a sneak peek into some of the educational content we have planned for 2024.

Personal Vulvar Lichen Sclerosus Goals for 2024

While I have been in remission for close to 4 years and had no symptoms during that time, there are still things I know I could be doing better to help my vulvar skin.

Use my Emollients More Frequently

First, emollient. 2023 was an incredibly busy year for me. For those who do not know, I have a full-time job, in addition to my work for LSSN, my work for The Lost Labia Chronicles, LS research, advocacy, and training. This means I work 6-7 days a week most of the year. With my new busy schedule, I realized I started letting some things slip with my VLS care.

One of the biggest things I let slip was my use of emollients. I know! Me…the self-proclaimed ‘emollient queen.’ But it’s true. With super-packed mornings, days, and evenings, I sometimes would find myself forgetting to apply my emollient for days in a row. However, one thing I didn’t do was beat myself up over forgetting. When I would notice I had been slacking, I would smile, walk over to my 2kg jar of coconut oil, apply, give myself grace, and move on.

Graphic design image of a blue jar of moisturizer to represent my wanting to use my emollients more in 2024.

However, this year, I am hoping to be more diligent in my emollient application, applying at least 1-2x per day.

If you’re new to VLS and the world of emollient, check out this video to learn more.

Prioritize Pelvic Health

Another piece of VLS care I kind of let go a little during a very busy 2023 was prioritizing my pelvic health. Pelvic floor muscles are connected to your vagina and vulva, so I want to make sure I give them some love and TLC as well. What does that look like for me? Well, since I no longer have pain with sex, I no longer need to go to in-person pelvic floor PT sessions. Instead, I like practicing pelvic floor yoga and breathing through Penny’s Pelvic Health Yoga Membership. However, I didn’t practice as much as I would have liked, so I’m giving myself a modest goal of 1-2 sessions–either pelvic floor yoga, pelvic floor meditations, and/or breathwork–per month. 

If you want to join the membership, you can use this link and code JACLYN for a full 30-day FREE trial and 30% off of your next month.

Practice What I Preach: Vulvar Lichen Sclerosus, Stress Reduction, and Nervous System Regulation

I also want to re-commit to nervous system regulation work. This has, in the past, been incredibly important for managing anxiety, improving my mental health and quality of life, and fostering a greater sense of stress resilience. 

I share some of what I do in my LS, Stress, and Vagus Nerve webinar, which you can purchase in my shop for 50% off.

However, you can also just google stress reduction techniques, try some out, and find what works for you!

I will commit to 10 minutes of some form of stress reduction technique per week in 2024.

Hopes for the Vulvar Lichen Sclerosus Community in 2024

2023 was a great year for VLS research. We saw new systematic reviews, research on quality of life, new breakthroughs in what happens with LS at a skin-deep level, and more.

Personally, I noticed a surge in interest in VLS in the scientific and medical communities. I hope 2024 will be an even bigger year for VLS research, with more studies and clinical trials and new insights/papers being published.

You can also expect a lot more VLS awareness work and events throughout the year from LSSN and other organizations and healthcare providers who advocate for VLS. 

We aim to increase our reach by growing our beautiful VLS community this year so that more and more folks can receive reliable, evidence-based information and support to help improve overall quality of life.

Graphic design image of a diverse group of people representing the VLS community.

We wish healing, happiness, comfort, and an improved quality of life to everyone with VLS in 2024.

Active Studies that Need Participants

Many people in the VLS community want more research. And trust me, we are right there with ya. However, most research cannot be conducted and published without patient participants. Please take a moment and read through these active initiatives, studies, and clinical trials actively recruiting VLS patients and consider joining if eligible. 

If you are not eligible but want to contribute to VLS awareness and more research, please share this page with others in your support network to give visibility to these studies.

Image of a team of scientists working together to represent active studies and clinical trials recruiting participants for vulvar lichen sclerosus research.

VLS Couple’s Study

OK, y’all. This one is near and dear to my heart as someone whose relationship was impacted by VLS and as someone who wants more research relationships and VLS. More research on how VLS impacts relationships can lead to more support initiatives for people with VLS and partners.

-Are you in a partnered relationship?⁠

-Has LS impacted your relationships and sexual health?⁠

-Do you wish there was more research into the effects of LS in partnered relationships so that we can better understand the unique struggles experienced by couples when one person has LS so that we can advocate for better support in the future?⁠

If you answered yes, consider participating in the VulvarLichen Sclerosus Couples Study led by Dr. Bouchard at @thephaselab!⁠

One of the reasons I brought my husband onto my YouTube channel to talk about his perspective of being with someone with VLS was to highlight that LS also impacts the people we are with and to give a voice to that side of the equation. ⁠

So if you want more LS research — particularly in sexual health and relationships — and you are in a partnered relationship, consider joining this study with your partner. ⁠

What’s Involved?

  • Three surveys with questions about your background as well as your sexual, relationship, and psychological health. These surveys will be completed over a 6-month period (i.e., one survey every 3 months) and will take approximately ~60 minutes to complete.
  • 28 days of brief daily surveys completed each evening. These surveys will take approximately 7-10 minutes to complete.

Who is Eligible?

  • You and your partner have been in a committed relationship for at least 6 months, live in the same geographic area (i.e., are not long-distance), and see each other at least 4 times per week
  • You and your partner are both 19+ years of age
  • You and your partner are both fluent in English
  • You and your partner have an email address and regular access to the Internet
  • You or your partner have received a diagnosis of vulvar lichen sclerosus from a doctor, such as a dermatologist or gynecologist
  • Your partner agrees to participate
  • You and your partner have attempted or had sexual activity within the past month (sexual activity includes masturbation, manual sex, oral sex, and penetrative sex)

Why This Vulvar Lichen Sclerosus Couple’s Study is So Important

Currently, most research into LS and sexual health focuses just on the person with VLS and not how it affects relationships. This study will help shed light on how couples navigate sexual health with LS. These insights may be used to build better support for relationships with lichen sclerosus.

Diverse image of four different couples.

The study is virtual, so you can participate regardless of where you live.⁠ Privacy and anonymity will be implemented throughout.
Participants of all genders and sexual orientations are welcome to participate in this study. ⁠

Compensation for completing all parts of this study is $100 per person (or $200 per couple). You will only be compensated for surveys you complete.⁠

For those of you who want more details, including how to talk to your partner about participating, please watch this live I did with Dr. Bouchard on my Instagram page.

If you’re interested in participating in this study, please send us an email at phase.vls@ubc.ca

The SHAPE project (Sexual Health and Genito-Pelvic Pain Knowledge Empowerment Hub) is Looking for Patient Partners.

We're excited to introduce you to our innovative initiative and invite you to become a vital part of our mission to transform women's health and sexual well-being in Canada.

SHAPE is dedicated to addressing the challenges surrounding sexual difficulties and genito-pelvic pain that affect the lives of countless individuals, especially women and gender-diverse people. These issues are pervasive and often accompanied by numerous barriers that hinder access to effective care and support.

Our project's primary goal is to mobilize knowledge, promote inclusivity, and create an equitable, culturally sensitive approach to sexual and genito-pelvic pain health. We believe that everyone should have access to safe, timely, and appropriate care, regardless of their background or identity.

We Need Your Help

This is where you come in. We are actively seeking individuals passionate about making a difference in women's health, especially concerning sexual health. Your unique perspective, insights, and experiences can significantly contribute to our mission. Whether you have a personal story to share or a strong desire to advocate for others, your involvement is invaluable.

We'd like to extend an invitation for you to consider becoming a patient partner in the SHAPE project. Your voice, along with our diverse and dedicated team, will help shape the future of sexual and genito-pelvic pain health in Canada.

How to Sign Up or Get More Information

We'd love to hear from you if you're interested or have any questions. Please feel free to respond to this email or email kaku.lema@ubc.ca, and we'll be more than happy to provide you with more information, address your concerns, and discuss how you can get involved.

SHAPE is committed to fostering an inclusive and supportive community where every voice is heard and valued. Together, we can break down barriers, raise awareness, and make a real difference in the lives of countless individuals who need it the most.

Thank you for considering this unique opportunity to join us in our mission. We look forward to connecting with you and exploring how your involvement can help transform women's health for the better.

Please consider joining the team! We need a diverse group of patients with LS/genitopelvic pain conditions to share their perspectives to ensure all voices are heard and needs are met.

Please direct all questions and/or join our incredible team by emailing Kaku at kaku.lema@ubc.ca

Genitopelvic pain and sexuality in sexual and sex/gender minority populations: An inclusive, longitudinal approach (The AGPP Study)

If you experience vulvar, pelvic, or anal pain, are 18+, and can speak and read English, then you are eligible to participate in this important research study from the Sexual Health Research Lab at Queen's University. This study seeks to find out how genitopelvic pain characteristics and its impact on sexual function change over a 24-month period.

Click here to learn more and participate. If you do the study, when they ask how you found out about it, The Lost Labia Chronicles/LSSN.

Clinical Trials

Image of a black doctor in blue scrubs with a clipboard and pencil next to them and the title text reading "Active and recruiting clinical trials".

Fractionated CO2 Laser With and Without Clobetasol for Treatment of Vulvar Lichen Sclerosus (VULVIE)

Recruiting in San Diego, California & Washington, DC, USA

Contact info: Name: Alexis Dieter, MD. Phone Number:
202-877-6526 Email: Alexis.a.dieter@medstar.net or melissa.k.gonzales@medstar.net

Click here for the full trial information

A Study to Evaluate Platelet-Rich Plasma to Treat Vulvar Lichen Sclerosus

Recruiting in Jacksonville, FL, USA

Contact info: Name: Reagan Dukes, Phone Number:
(904) 956-3302, Email: Dukes.Reagan@mayo.edu

Click here for the full trial information

Laser vs Clobetasol for Lichen Sclerosus

Recruiting in Herne, Germany

Contact info: Name: Clemens B Tempfer, MD, Phone Number:
+492323499, Email: clemens.tempfer@rub.de

Click here for the full trial information.

Efficacy and Safety of MC2-25 Cream & Vehicle in Women With Vulvar Lichen Sclerosus (VLS) (Orchid 1)

Recruiting in Kolding, Denmark

Contact info: Name: Maj Dinesen, MD, Phone Number:
+45 2851 9302, Email: mdi@mc2therapeutics.com

Click here for the full trial information

Sneak Peak into 2024’s Content

As one of LSSN’s main content creators, I’m super excited about this upcoming year’s educational content. 

Graphic image design of a person working at a desk with a ring light and recording equipment and a phone with a person on YouTube to represent all the content LSSN has in store for vulvar lichen sclerosus in 2024.

Here’s a glimpse into the kind of content you can look forward to this year:

  • Vulvar lichen sclerosus in darker skin tones
  • Why do some people experience a loss of pigmentation in the vulvar skin 
  • Does VLS affect the bladder?
  • Perianal lichen sclerosus and how to treat it
  • How to treat flare-ups
  • Supplements and vulvar lichen sclerosus
  • Mindfulness and sexual health
  • Central sensitization and how this may contribute to your vulvar pain
  • Managing herpes and vulvar lichen sclerosus
  • Dating with VLS
  • And so much more!

Be sure to get on our newsletters (links below) so you do not miss out on any of this content!

Conclusion

In sum, we cannot wait for more awareness and healing in 2024. We hope you consider joining some of the active recruiting studies and enjoy all the incredible content and events LSSN has lined up for you in 2024.

Share your vulvar lichen sclerosus goals and hopes for 2024 in the comment section below.

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Sign up for LSSN’s monthly newsletter here.

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Reach Out To Me

Whether you are debating booking a support call with me, have a quick question, or want to share something related to my content, I can be reached via:

Email: Jaclyn@lostlabia.com

DM: @thelostlabiachronicles on Instagram, Facebook, and TikTok.

Support Resources

FREE Lichen Sclerosus Virtual Meetup hosted by myself and Kathy of Lichen Sclerosus Podcast – sign up here.

Feel free to book a 1:1 call with me to discuss mental health or sexual health or have general questions about lichen sclerosus. Simply click this link to learn more about lichen sclerosus peer support calls.

Image of a person with dark brown skin and dark hair wearing a yellow shirt sitting at a desk on a call. The title text reads, "1:1 LS Peer Support Calls, book now".

LSSN Membership – sign up here.

Check out my LS resources page here for a more detailed list of free and paid support resources.

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