Episode Description:

Welcome to the Lichen Sclerosus Podcast brought to you by the Lichen Sclerosus Support Network. I'm your host, Kathy, and today we’re excited to bring you a conversation with an amazing researcher, Leia Mitchell. If you’ve listened before, you might recognize her from past episodes. This time, we’re diving into a new possible treatment for Lichen Sclerosus.

What You’ll Learn in This Episode:

• Insights into two groundbreaking studies on silicone-based treatments for Lichen Sclerosus.
• The science behind silicone’s effects on collagen production and skin rejuvenation.
• What makes this new treatment non-steroidal and why that matters.
• Eligibility requirements and what participation in the study entails.

Special Guest:

Meet Leia Mitchell, a passionate and knowledgeable physician assistant with extensive experience in Lichen Sclerosus treatment and clinical research. Her expertise and dedication make her a valuable voice in the LS space.

Key Moments:

• 1:49 – Discussion of two studies: one completed and one actively recruiting participants in Florida, DC, and NYC.
• 3:35 – Leia explains how silicone aids collagen production and benefits skin conditions, including burn victims.
• 5:21 – Application process: The silicone gel is easy to use—dab and rub gently over affected areas.
• 6:26 – Leia highlights the need for effective LS treatments and shares how she became involved in the study.
• 7:14 – The appeal of non-steroidal treatments and how Leia encountered this promising solution.
• 9:24 – Study requirements: participants must have an active LS diagnosis, abstain from steroids or other topicals, and undergo pre- and post-study biopsies.
• 13:10 – The study is initially limited to five participants, but a larger trial may follow pending positive results.
• 15:09 – Leia shares her excitement for the study’s potential outcomes and outlines the 10-week process, which includes subjective results announced after publication.
• 34:01 – Leia discusses the goal of FDA approval to make the treatment accessible and affordable for patients through insurance coverage.

Connect with Us:

Visit the Lichen Sclerosus Support Network for more resources: lssupportnetwork.org

Get more information on the study at https://clinicaltrials.gov/study/NCT06662942?cond=stratamgt&rank=2

or email the CVVD at [email protected]

Join Kathy and Sienna as they introduce the "Unstoppable You" workshop, designed specifically for young adults with lichen sclerosus (LS). They'll discuss the inspiration behind the workshop, its unique features, and how it can empower young people to thrive with LS.

Key Takeaways:

• The "Unstoppable You" workshop is a 5-week program created to help young adults navigate the challenges of LS with confidence.
• The workshop will cover topics such as communicating about LS, redefining intimacy, embracing pleasure, and building self-confidence.
• Participants will have access to expert guidance, interactive sessions, a private online community, and evidence-based education.
• The workshop starts on February 17th and runs until April 7th, with the community remaining open through May.
• Early bird pricing is available from February 3rd to 10th.

Call to Action:

• Visit https://lssupportnetwork.org/unstoppable to learn more and register for the "Unstoppable You" workshop.
• Join the LSSN email list to stay updated on future events and resources: lssupportnetwork.org/subscribe

Chapter Markers:

• 00:00 Welcome to the Lichen Sclerosus Podcast
• 00:38 Meet Sienna: Chief Fundraising Officer
• 01:48 Sienna's Journey with Lichen Sclerosus
• 03:03 Creating a Workshop for Young People
• 04:25 Workshop Structure and Goals
• 07:56 Workshop Sessions Overview
• 14:59 Pricing and Registration Details
• 18:13 Final Thoughts and Encouragement

Connect with LSSN:

• Website: lssupportnetwork.org
• Email: [email protected]

Join us for an insightful conversation with Dr. Jill Krapf, a leading expert in vulvar lichen sclerosus (LS), as we discuss the challenges and opportunities in LS care and introduce the Provider Continuous Education Program (PCEP).

Why Provider Education Matters:

• LS is often misdiagnosed or diagnosed late, leading to years of unnecessary suffering for patients.  
• Many healthcare providers lack the knowledge and training to properly diagnose and manage LS.  
• The PCEP will equip providers with the tools and resources they need to provide effective, patient-centered LS care.  

How the PCEP Will Make a Difference:

• The PCEP will provide comprehensive education on LS, covering diagnosis, treatment, and patient communication.  
• It will feature expert-led training by experienced LS specialists.  
• It will focus on evidence-based practices and patient-centered care.  
• It will create a network of knowledgeable healthcare providers who can support each other and share best practices.  

Call to Action:

Support the PCEP and help us transform the future of LS care. Your donation will directly impact the lives of those affected by this often-misunderstood condition.

Donate to LSSN's Campaign: https://lssupportnetwork.org/givingtuesday

Additional Resources:

• Learn more about LSSN's programs and resources: https://lssupportnetwork.org
• Join LSSN's online community: https://lssupportnetwork.org/membership
• Attend LSSN's Giving Tuesday live events: https://lssupportnetwork.org/givingtuesday

Thank you for listening and for your support!

Join us for a special Giving Tuesday episode where we discuss the importance of supporting the Lichen Sclerosus Support Network (LSSN) and their mission to end the misdiagnosis and suffering caused by lichen sclerosus (LS).

In this episode, you'll learn about:

• The challenges of living with LS and the impact of misdiagnosis.  
• The importance of patient education and support in managing LS.  
• The LSSN Provider Continuous Education Program (PCEP) and how it will improve healthcare provider knowledge and patient care.
• How your donations can help LSSN continue to provide vital resources and support to the LS community.

Support LSSN this Giving Tuesday and help us break the cycle of suffering for people with LS. Your generosity can make a real difference in the lives of those affected by this often misunderstood condition.

Resources and Links:

• Donate and Attend LSSN's Giving Tuesday Event: https://lssupportnetwork.org/givingtuesday
• Help LSSN raise money without disclosing your diagnosis: https://docs.google.com/document/d/16hoqesjqg_n68QGkGQPHAh0EYrZME1CH0NfVGNMVksQ/copy?usp=sharing
• Learn more about LSSN's programs and resources: https://lssupportnetwork
• Join LSSN's online community: https://lssupportnetwork.org/membership
• Become an LSSN volunteer: https://lssupportnetwork.org/volunteer

Thank you for listening and for your support!

If you're feeling the weight of unresolved issues in your intimate relationship, then you are not alone! Couples often struggle to communicate openly about sex and intimacy, leading to frustration and distance instead of connection. But what if there's a way to enhance your communication and connection, even in the midst of challenges? Let's dive into the journey of a couple navigating the complexities of long-term relationships and discover the transformative power of open dialogue and shared experiences.

In this episode, you will be able to:

• Gain insights into managing pelvic floor dysfunction in individuals dealing with Lichen Sclerosus for better everyday comfort and confidence.
• Explore strategies for maintaining sexual intimacy while managing Lichen Sclerosus to nurture connection and closeness with your partner.
• Learn how to provide meaningful support to partners coping with Lichen Sclerosus, fostering empathy and understanding in the relationship.
• Enhance communication about sexual health in long-term relationships, fostering a deeper emotional and physical connection with your partner.

My special guests are Annie and Micheal

Annie and Michael bring a unique perspective to the conversation as a couple navigating the challenges of living with Lichen Sclerosus. Annie's personal journey with LS, from dealing with misdiagnosis to undergoing a biopsy, provides a firsthand understanding of the physical and emotional toll this condition can take. Michael, as a supportive partner, shares his experiences of navigating the impact of LS on their intimate relationship and the communication challenges they faced during this time. Their honest and open dialogue sheds light on the complexities of managing LS within a long-term relationship, making their insights valuable for others in similar situations.

The key moments in this episode are:

00:00:00 - Introducing Annie and Michael

00:02:22 - Annie's LS Journey

00:08:25 - Biopsy Process and Support

00:13:02 - Communication and Relationship

00:15:55 - Medical Diagnosis and Initial Concerns

00:17:43 - Age and Diagnosis

00:19:06 - Diagnosis Confirmation and Frustrations

00:23:26 - Partner's Involvement and Education

00:26:35 - Medication Side Effects and Treatment Adjustments

00:30:20 - Advocating for Yourself

00:32:30 - Importance of Education for Doctors

00:36:06 - Impact on Relationships

00:39:37 - Transformation through Communication

00:43:47 - Coping with Stress and Loss

00:45:05 - The Importance of Communication in Relationships

00:47:17 - Broadening Perspectives on Intimacy and Sex

00:51:27 - Seeking Support for Partners and Caregivers

00:55:43 - Journey to Healing with Dr. Bob

00:58:52 - Excitement for the upcoming summit

00:59:27 - Doctor Bab's thorough care

01:00:53 - Virtual visits with Doctor Bab

01:01:37 - Open communication about sex

01:02:38 - Summit topics and invitation

• Register for the Holistic Healing Summit from May 13th to 17th at lssupportnetwork.org to gain valuable insights and information on intimacy, communication, sexual intimacy, and emotional intimacy in the context of Lichen Sclerosus.
• Explore the book Sex Talks: The Five Conversations That Will Transform Your Love Life by Vanessa Marin for valuable guidance on enhancing intimacy and communication in your relationship. https://www.amazon.com/Sex-Talks-Five-Conversations-Transform/dp/1668000016
• Connect with Dr. Babb, a vulvar specialist, for thorough examinations and expert guidance on managing Lichen Sclerosus. Virtual visits are also available for those who are not local. https://havencenter.com
• Explore the SweetSpot Labs body wash and other products recommended by Annie for gentle care of the skin, especially for those with Lichen Sclerosus. https://shop.sweetspotlabs.com/

Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.

Bonus Alert until April 28: Check out the bonus 14 video replays from past summits that come with the Wholistic Healing Summit All-Access pass. https://lssupportnetwork.org/whs

Join us for this informative panel discussion on lichen sclerosis and sexual health. Hosted by Kathy Ruiz-Carter, we have a talented group of experts: patient advocate Jaclyn Lanthier, gynecologist Dr. Suzanne Weber, and pelvic health physical therapist Dr. Mamawah Bourque.

We cover key topics like LS treatment and management, tips for engaging in sexual activity, managing symptoms during menstruation, considerations around pregnancy, and more. The panel shares practical guidance grounded in both clinical expertise and lived experience. You'll discover helpful insights on using steroids, alternate therapies, dilator work, lubricants, vulvar care, pelvic floor health, open communication with partners, and listening to your body's needs.

We also talk about emerging research on LS progression and hormonal connections. Whether newly diagnosed or a long-time LSer, you'll find empowering takeaways to improve your sexual health and approach LS management more holistically. We hope you feel encouraged in your journey toward remission and pain-free intimacy.

Let us know in the comments what resonated most or what additional questions you have! And don't forget to check out the bonus 14 video replays from past summits that come with the Wholistic Healing Summit All-Access pass. https://lssupportnetwork.org/whs

In this episode, you will be able to:

• Understand how to manage lichen sclerosus during pregnancy for a smoother journey.
• Discover practical tips for maintaining sexual health while dealing with vulvar lichen sclerosus.
• Learn effective strategies for comfortable bike riding despite lichen sclerosus symptoms.
• Explore the benefits of pelvic floor therapy in managing lichen sclerosus symptoms.
• Uncover the hormonal effects on lichen sclerosus symptoms and how to mitigate them.

My special guest is Jaclyn Lanthier, Suzanne Weber, and Mamawah Bourque.

The key moments in this episode are:

00:00:00 - Introducing the National Vova Awareness Day event.

00:03:24 - LS progression and management.

00:07:33 - Natural and maintenance options for LS treatment.

00:12:07 - Treating different areas of the genitals.

00:15:26 - Personalized application of treatment.

00:16:32 - Importance of Physical References

00:17:51 - Engaging in Sexual Activity with LS

00:21:16 - Transitioning from Dilator Work to Penetration

00:23:54 - Approaching Sexual Activity with LS

00:28:24 - Managing Pain and Burning After Sexual Activity

00:32:42 - Managing Burning Sensation and Pain after Sex

00:33:50 - Wholistic Healing Summit

00:34:58 - Gynecologist Approach to Burning Sensation and Pain after Sex

00:36:09 - Enhancing Genital Arousal and Lubricant Recommendations

00:42:59 - Impact of Lichen Sclerosis on Pregnancy

00:49:02 - Perineal Massages and Breathing Techniques during Pregnancy

00:52:21 - Impact of BLS on Pregnancy and Postpartum

00:54:27 - Menstruation and LS Symptoms

01:00:58 - Hormonal Component and Moisture Management during Menstruation

01:03:18 - Treating Anal LS and Anal Fissures

01:05:32 - Managing Anal LS Symptoms

01:08:36 - Tips for Bike Riding with LS

01:11:05 - Pelvic Floor Stretches

01:13:19 - Wholistic Healing Summit

01:14:19 - Gratitude and Farewells

The resources mentioned in this episode are:

Get your ticket for the all-access pass to the Wholistic Healing Summit to access exclusive sessions on managing LS symptoms, including pain-free sex, pelvic floor PT, and more. https://lssupportnetwork.org

Join the Wholistic Healing Summit to gain valuable insights on how to navigate relationships and have conversations about LS with partners, family, friends, and employers.

Topics:

• What is the LSSN Wholistic Healing Summit?
• Importance of addressing relationships affected by Lichen Sclerosus (LS)
• Summit focus: Partners, Caregivers, and Disclosure
• Sessions for patients, partners, and caregivers
• Wellbeing activities for stress management
• Opportunities to connect with other attendees

Key Points

• LSSN is a non-profit patient organization providing education and support for those with LS.
• LS impacts all aspects of life, including relationships.
• The summit helps patients, partners, and caregivers discuss LS, manage sexual health, and build intimacy.
• Free, Value, and All Access ticket options are available.

Time Stamps

00:00:00 - Introduction to Holistic Healing Summit

00:02:36 - Challenges in Talking About LS

00:04:38 - Disclosing LS to Partners

00:08:45 - Supporting Caregivers of LS Patients

00:10:07 - Managing LS Symptoms and Well-being

00:15:18 - Ticket Options for the Summit

00:16:09 - All Access Pass Benefits

00:17:18 - Partnership Meetup

00:18:48 - Exclusive Summit Benefits

00:20:55 - Summit Evolution and Community Impact

Hey friend! I recently had the pleasure of chatting with Dr. Melissa Mauskar, a true rockstar in the world of vulvar health research. She illuminated some fascinating new findings about the hormone and microbiome landscapes in lichen sclerosus.

I walked away feeling so hopeful about how this work might improve patient care down the road! 🙌 Dr. Mauskar broke down the key takeaways in an accessible way – no need for a medical degree to follow along! Whether you have lichen sclerosus yourself or treat patients, I think you'll find this chat insightful.

A few highlights that caught my ear:

• The role of progesterone and other hormones in LS skin
• How treatment impacts microbiome diversity
• Exciting areas for future research.

Dr. Mauskar's passion for patient-centered care and collaboration across specialties to move the needle is inspiring. She helped me understand how this study into hormones and the vulvar microbiome in lichen sclerosus, while small, contributes an important puzzle piece to better understanding and treating this chronic condition.

Let me know what intrigued or surprised you! I always love hearing your experiences and thoughts. And if you appreciate Dr. Mauskar and other clinicians advancing vulvar health, show some love in the comments! ❤️

In this episode, you will be able to:

• Explore the intricate connection between hormonal balance and lichen sclerosus for a holistic understanding.
• Uncover the role of the microbiome in lichen sclerosus and its impact on treatment approaches.
• Create personalized treatment plans tailored to individual needs for more effective management of lichen sclerosus.
• Gain insights into providing comprehensive care for vulvar health, enhancing patient outcomes.
• Discover the benefits of collaboration in advancing research and care for vulvar health.

Dr. Melissa Mauskar,  an Associate Professor in the Department of Dermatology and the Department of Obstetrics and Gynecology at UT Southwestern Medical Center, is not your typical expert. She's a trailblazer in the field, serving on the board of the newly founded Vulvar Dermatoses Research Consortium and as the secretary general for the  North American branch of the International Society for the Study of Vulvovaginal Disease.

With a deep commitment to patient care and a particular focus on lichen sclerosus, Dr. Mauskar's latest research delves into this condition's hormonal and microbiome aspects. Her dedication and expertise in unraveling the complexities of lichen sclerosus make her a true star in the field.

00:00:12 – Introduction to Lichen Sclerosis Podcast 00:02:44 – Research Project Background 00:09:36 – Study Methodology and Findings 00:12:42 – Potential Impact and Future Research 00:15:05 – Skin Hormone Levels and Implications 00:17:02 – Significance of Study Results 00:18:01 – Understanding Microbiome 00:20:35 – Treatment Approach and Microbiome 00:24:33 – Role of Yeast in Lichen Sclerosis 00:27:30 – Future Research and Hormonal Influences 00:33:30 – Recognition of Healthcare Providers 00:34:06 – Importance of Care 00:34:52 – Momentum in Menopause Research 00:35:43 – Need for Specialized Healthcare 00:36:31 – Conclusion and Call to Action

• Link to the abstract for the study mentioned in the podcast: This will provide detailed information about the study conducted by Dr. Mauskar and her team, “Assessment of the Cutaneous Hormone Landscapes and Microbiomes in Vulvar Lichen Sclerosus,” allowing you to delve deeper into the findings and implications. https://pubmed.ncbi.nlm.nih.gov/38368928/
• Dr. Mauskar's Instagram profile: Follow Dr. Mauskar on Instagram to stay updated on her work, research, and insights in the field of dermatology and women's health. https://www.instagram.com/melissamauskarmd/
• Contact Dr. Mauskar at UT Southwestern Medical Center: If you are in the UT Southwestern area and in need of a dermatologist, reach out to Dr. Mauskar for expert care and consultation. https://utswmed.org/doctors/melissa-mauskar/

If you'd like to share your voice in person (virtually), join our next virtual meetup.

We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.

Share your experience and heal. I have met 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!

Get ready for a heart-pounding year-end review of the Lichen Sclerosis Support Network's incredible work. From informative videos to virtual meetups, they're empowering LS warriors like me. But just when everything seems perfect, a shocking revelation threatens to unravel all their progress. Will they overcome this unexpected obstacle? Find out on the Lichen Sclerosus Podcast!

In this episode, you will be able to:

• Discover the latest updates and initiatives from the Lichen Sclerosis Support Network (LSSN) in their year-end review.

• Explore diet and lifestyle treatment resources that can help manage Lichen Sclerosis (LS) and improve your overall well-being.

• Dive into the digital pages of LS Zine, a magazine dedicated to providing valuable insights and support for individuals living with LS.

• Learn about the whole-body approach of the Wholistic Healing Summit and what next year's summit will focus on.

• Learn about the other exciting projects and initiatives undertaken by the Lichen Sclerosis Support Network (LSSN) to support individuals dealing with LS.

The key moments in this episode are: 00:00:11 - Introduction 00:01:10 - Mission of LSSN 00:02:40 - Giving Tuesday 00:11:47 - What's New On The Website 00:14:42 Blog Posts 00:18:08 - Video Posts 00:22:00 - LSSN YouTube Channel 

00:26:07 Virtual Meetups

00:30:56 LS Brochures

00:33:49 LSSN Shop 00:36:57 Long Form Content 00:41:04 LS Zine/LSSN's Digital Magazine 00:43:09 LSSN Board/Medical Advisory Board 00:46:18 Wholistic Healing Summit 00:47:50 LSSN Mini Summit: Vulvovaginal Conditions 00:50:02 Who have we partnered with? 00:57:40 - Reflecting on Accomplishments and Future Goals

Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.

• Visit our website at Lichen Sclerosus Support Network to access our resources and information. https://lssupportnetwork.org

• Check out our blog for over 42 informative posts on Lichen Sclerosus. https://lssupportnetwork.org/blog

• Check out our 32 video educational posts on everything LS related. https://lssupportnetwork.org/videos

• Attend our virtual Meetups to connect with others and learn more about Lichen Sclerosus. https://lssupportnetwork.org/connect

• Find a healthcare provider in our directory who specializes in Lichen Sclerosus. https://lssupportnetwork.org/providers

• Browse our brochures for helpful information on managing Lichen Sclerosus. https://lssupportnetwork.org/brochure

• Shop at our online store for Lichen Sclerosus-related products and merchandise. https://lssupportnetwork.org/shop

• Support our education fund by making a donation on Giving Tuesday or becoming a monthly donor. https://lssupportnetwork.org/givingtuesday

• Stay updated on news and events at LSSN by subscribing to our newsletters. https://lssupportnetwork.org/subscribe

• Contact with Functional Nutrition Therapist Heather Cooan on her website at https://heathercooan.com

• Check out our boards at https://lssupportnetwork.org/lssn-board

• Get a copy of our digital magazine at https://lszine.lssupportnetwork.org

• https://lssupportnetwork.org/

• https://www.youtube.com/https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ

• https://www.linkedin.com/in/lssn

• https://www.facebook.com/lichensclerosussupportnetwork

• https://instagram.com/lichensclerosussupportnetwork

Have you heard about the LSSN Mini Summit: Vulvovaginal Conditions? It’s our 3-day, 100% virtual event presented by medical experts on rarely discussed conditions, such as lichen sclerosus. You may be saying, I already have LS. Why do I need to know about other conditions? Or I don’t want to know about anything else. But the thing is, this is VERY important to your LS journey! In this episode, I will explain why you do not want to miss this summit, especially if you already have a vulvovaginal condition. We’re going to talk about: 🪷 Misdiagnosis 🪷 Secondary conditions 🪷 Proper treatment 🪷 Empowerment and self-advocacy 🪷 Having a medical resource you can trust at your fingertips

Want to learn more about the summit? Head to https://lssupportnetwork.org/minisummit2023 for more information and details. Get your All-Access Pass before September 19, 2023, and get access to (W)holistic Healing Summit 2022 and 2023 replays until November 1, 2023. You do not want to miss this.

Other links from the episode:

Virtual Meetups

https://lssupportnetwork.org/connect

Provider Directory

https://lssupportnetwork.org/providers

LSSN Membership

https://lssupportnetwork.org/membership