Episodes
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Are you living with Lichen Sclerosus? This podcast episode dives into the Wholistic Healing Summit, a patient-focused virtual event hosted by the Lichen Sclerosus Support Network (LSSN). LSSN's Kathy shares details about the summit's comprehensive program, featuring leading medical experts, sessions on intimacy and self-esteem, and practical advice for daily living. Learn about the different ticket options and how this summit can provide education, support, and community for those affected by LS.
Get your ticket today! - https://lssupportnetwork.org/whs
Got questions? Email us at [email protected]
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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]
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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/subscribeChapter Markers:
00:00 Welcome to the Lichen Sclerosus Podcast00:38 Meet Sienna: Chief Fundraising Officer01:48 Sienna's Journey with Lichen Sclerosus03:03 Creating a Workshop for Young People04:25 Workshop Structure and Goals07:56 Workshop Sessions Overview14:59 Pricing and Registration Details18:13 Final Thoughts and EncouragementConnect with LSSN:
Website: lssupportnetwork.orgEmail: [email protected]Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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.orgJoin LSSN's online community: https://lssupportnetwork.org/membershipAttend LSSN's Giving Tuesday live events: https://lssupportnetwork.org/givingtuesdayThank you for listening and for your support!
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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/givingtuesdayHelp LSSN raise money without disclosing your diagnosis: https://docs.google.com/document/d/16hoqesjqg_n68QGkGQPHAh0EYrZME1CH0NfVGNMVksQ/copy?usp=sharingLearn more about LSSN's programs and resources: https://lssupportnetworkJoin LSSN's online community: https://lssupportnetwork.org/membershipBecome an LSSN volunteer: https://lssupportnetwork.org/volunteerThank you for listening and for your support!
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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/1668000016Connect 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.comExplore the SweetSpot Labs body wash and other products recommended by Annie for gentle care of the skin, especially for those with Lichen... -
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.
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Topics:
What is the LSSN Wholistic Healing Summit?Importance of addressing relationships affected by Lichen Sclerosus (LS)Summit focus: Partners, Caregivers, and DisclosureSessions for patients, partners, and caregiversWellbeing activities for stress managementOpportunities to connect with other attendeesKey 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
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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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.
My Special Guest Is Dr. Melissa MauskarDr. 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.
The Key Moments In This Episode Are: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
The Resources Mentioned In This Episode Are: 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... -
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
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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
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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In this episode, you will be able to:
Explore the impact of holistic methods on pelvic health and wellness.
Harness the strength of your pelvic area to alleviate pain.
Foster a nurturing environment for individuals coping with pelvic pain.
Unlock a fulfilling life through empowerment for those with chronic conditions.
My special guest is Penny Petersson
Penny reaches her audience through her Instagram account, @wellbeingbypenny, where she spreads positivity and humor, despite her own pelvic health challenges. Her unique way of turning the difficult into digestible content has made her a true inspiration in the pelvic pain community.
Penny's Resources:
Follow her on Instagram at https://www.instagram.com/wellbeing.by.penny
Listen to Penny's new podcast The Pelvic Power Podcast.
Join her membership the Pelvic Health Yoga Membership today, at https://well-being-by-penny-s-school.teachable.com/?affcode=848302_qg_-pve8 and use code 'JACLYN' for a 7-day free trial and 30% off your first month.
Connect with us:
Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
Facebook: https://www.facebook.com/lichensclerosussupportnetwork
Website: https://lssupportnetwork.org/
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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In this podcast, Sophie Reese, an English researcher, discusses her work on the project Living with Vulva LS, a Mixed Method Study. She mentions the development of a checklist of diagnostic criteria to help health professionals diagnose LS accurately and quickly. Sophie highlights the challenges in recruiting participants for research studies, particularly ethical issues, and the responsibility of researchers to publish their findings to create real-world changes. The interviewee emphasizes the need for inclusivity in medical research, communicating with different groups, and improving research involvement among patients. She invites patients to reach out to providers or patient groups to learn about research opportunities and get involved in research organizations.
In this episode, you will be able to:
Delve into the challenges faced in Lichen Sclerosus research and the consequences for affected individuals.
Realize the value of spreading awareness about vulval and vaginal conditions to empower women.
Grasp the essential role education and accurate diagnosis play in successfully treating Lichen Sclerosus.
Investigate the impact of diverse and inclusive language in Lichen Sclerosus research on patient well-being.
Recognize the importance of increasing healthcare access and improving treatments for Lichen Sclerosus patients.
Connect with Sophie Rees on Instagram at https://www.instagram.com/vulva_resea...
Core outcome domains for lichen sclerosus: a CORALS initiative consensus statement (https://academic.oup.com/bjd/article/...)
Connect with us:
Instagram: https://www.instagram.com/lichenscler...
YouTube: https://www.youtube.com/channel/@lich...
Website: https://lssupportnetwork.org/
Loved this episode? Make sure to subscribe.
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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When I started the podcast, I never imagined it would grow into something so much more - the Lichen Sclerosus Support Network and their annual (W)holistic Healing Summit. Now, every year, we strive to make a brighter tomorrow for those facing the same struggle I once did. But what does the future hold for this amazing network?
Learn more and get your pass today at https://whhs.lssupportnetwork.org/
In this episode, you will be able to:
Experience the transformational effects of holistic healing on lichen sclerosus patients at the inspiring summit.
Dive into the world of comprehensive resources to fill the information gap and learn more.
Elevate your network by participating in interactive sessions and listening to expert talks within the community.
Unfold necessary discussions on sexual health, pregnancy, and menopause related to lichen sclerosus.
Choose from free, basic, or all-access passes to get different perk levels
“It's important that you guys get that information in a way that you can understand.”
The resources mentioned in this episode are:
Sign up for the (W)holistic Healing Summit starting on May 8th by visiting whsupportnetwork.org or clicking the link in the description.
Choose a pass option: Free Pass (access to live sessions), Basic Pass ($25, access to recordings for 30 days), or All Access Pass ($100, lifetime access to keyword searchable recordings, PDFs, notes, worksheets, and exclusive sessions).
Attend the live sessions, including internship as a vulvar specialist with Dr. Jill Krapf, pain management with Dr. Corey Babb, pelvic health physical therapy, sex education, pleasure practices, and talks on pregnancy and menopause.
After each session, participate in community lounge rooms to connect with others and share experiences.
Visit the exhibitors to learn about products and resources to help with lichen sclerosus.
Upgrade your pass anytime if you want more access to the event content.
Leave any questions in the comments section of the video for further clarification.
The key moments in this episode are: 00:00:00 - Introduction, 00:02:14 - The Holistic Healing Summit, 00:06:21 - Expert Speakers, 00:08:32 - Passes and Benefits, 00:10:24 - Conclusion,
Learn more and get your pass today at https://whhs.lssupportnetwork.org/
Connect with us:
Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
Facebook: https://www.facebook.com/lichensclerosussupportnetwork
Website: https://lssupportnetwork.org/
Loved this episode? Hit the like button and make sure to subscribe.
Mentioned in this...
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Join me in the second part of this conversation with Dr. Jill Krapf, LS specialist; researcher; author; and educator, about her research review, "Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies."
When evaluating treatments for lichen sclerosus, one must consider all variables involved for optimal application. In this review article, the authors explore the science of the skin and the effects of inflammation, as well as the absorption of the medication.
However, with limited research guiding us, the answer remains scattered and uncertain, leaving us with more questions than answers.
In this episode, you will be able to:
Discover the effectiveness of topical steroid treatments in managing Lichen Sclerosus. Understand skin absorption concerns and dosages when using steroid treatments. Uncover truths about the myths surrounding the long-term side effects of steroid use. Grasp the significance of adhering to proper steroid application guidelines. Delve into alternative treatment options beyond steroid usage for Lichen Sclerosis.
My special guest is Dr. Jill Krapf Dr. Jill Krapf is a renowned researcher, author, vulvar specialist, and educator with a passion for helping patients suffering from Lichen Sclerosus. Her extensive knowledge and experience in the field make her an invaluable resource for those seeking guidance on steroid treatments for Lichen Sclerosus.
Dr. Krapf's dedication to uncovering the most effective methods of treatment has led her to conduct in-depth research on the impact of steroids on Lichen Sclerosus patients. With a wealth of experience and expertise, Dr. Krapf is an ideal guest to shed light on this complex topic and provide much-needed answers to those affected by this condition.
The key moments in this episode are:
00:00:00 - Introduction,
00:02:26 - Types of Research,
00:07:45 - Purpose of the Review,
00:13:08 - Absorption of Topical Steroids,
00:15:57 - Understanding Lichen Sclerosis Skin,
00:17:42 - Interpreting the Effects of Inflammation on Skin,
00:19:27 - Burnt Out Lichen Sclerosis and Hyperpigmentation,
00:22:05 - Risks of Topical Steroids,
00:25:48 - Thinning of the Skin,
00:31:57 - Misuse of Steroids,
00:33:23 - Side Effects of Steroid Use,
00:36:02 - Tapering Medications,
00:37:37 - Current Steroid Use Guidelines,
00:39:32 - CO2 Laser and Steroid Injections,
00:43:05 - Conclusion,
Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org. Resources: Vulvar Lichen Sclerosus: Current Perspectives
https://www.vulvodynia.com/assets/files/ijwh-191200-vulvar-lichen-sclerosus-current-perspectives.pdf
Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies
https://vulvodynia.com/assets/files/Lichen-Sclerosus.pdf
Center for Vulvovaginal Disorder
http://cvvd.org
LSSN Blogs:
How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly
https://lssupportnetwork.org/applyproper
Lichen Sclerosus Treatment Series Part 1: Steroids
https://lssupportnetwork.org/steroids1
Lichen Sclerosus Treatment Series Part 2: Steroids
https://lssupportnetwork.org/steroids2
LSSN Video:
Unraveling the Mystery of Lichen Sclerosus...
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Has lichen sclerosus changed your sex life?
Did you lose your self-confidence?
Do you feel less at home in your body?
Has your sexual identity been destroyed?
Is your libido nonexistent? Like you have no desire for sex and intimacy?
Here’s the thing. You are not alone!
What if we had a way to turn it around?
If you're ready to get your sexy back, you need to watch this video and go to
https://lssupportnetwork.org/sexyback
We spent months designing a unique program for folks with lichen sclerosus with chronic illness, sex educator Shauna Farabaugh.
A one a kind of life-changing experience for our community.
And you do not want to miss it. We're only accepting the first 15 people into the program.
By attending the live classes, doing the practices, and interacting with the community, you will:
Increase your libido and desire Learn how to communicate sexual desires and limits Discover a new view of what being sexual means Appreciate your new sexual being Love and accept who you are And so much more!
Sex is a learnable skill.
Take the first steps towards your sexual rebirth today, and get ready to get your sexy back!
Click the link below to see program specifics and sign up in time for our early bird special, April 3-9, 2023.
https://lssupportnetwork.org/sexyback
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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Join me as I talk to Dr. Jill Krapf, LS specialist; researcher; author; and educator, about all things steroids. What does it do to the skin? Why do we need it? And she answers some frequently heard steroid concerns.
If you’re on the fence about or want to learn more about steroids, this is the episode for you.
In this video, you will learn:
1. What is the current understanding of the cause of Lichen Sclerosus, and what role do external stressors, diet, hormones, and trauma play?
2. How can topical steroids be effectively used to manage Lichen Sclerosus?
3. What are the best strategies for individualized care for Lichen Sclerosus?
Resources:
Vulvar Lichen Sclerosus: Current Perspectives
https://www.vulvodynia.com/assets/files/ijwh-191200-vulvar-lichen-sclerosus-current-perspectives.pdf
Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies
https://vulvodynia.com/assets/files/Lichen-Sclerosus.pdf
Center for Vulvovaginal Disorder
http://cvvd.org
LSSN Blogs:
How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly
https://lssupportnetwork.org/applyproper
Lichen Sclerosus Treatment Series Part 1: Steroids
https://lssupportnetwork.org/steroids1
LSSN Video:
How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly
https://lssupportnetwork.org/drjill
Connect with us:
Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
Facebook: https://www.facebook.com/lichensclerosussupportnetwork/
YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
Website: https://lssupportnetwork.org/
Loved this episode? Make a donation to help us create new content. https://lssupportnetwork.org/donate
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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Ashlie Crewe, a Physical Therapist with a Psychology degree, embarks on a journey to help patients manage their chronic pain using neuroscience, only to find her own trial by fire as she discovers a unique way to challenge a patient's overprotective nervous system.
"The beautiful thing, good and bad, is that physical therapists, we're not allowed to prescribe medicine in the United States. So I think one of the cool things about my job then is we're really taught to work with the human body, and we're not allowed to order imaging, we're not allowed to prescribe medications.”
Ashlie Crewe is a Pelvic Health physical therapist and teacher/mentor to Pelvic Health physical therapists across the United States. She has a passion for neuroscience, psychology, and Pelvic Health, making her an expert in persistent pelvic pain.
Ashlie Crewe found her true calling when she attended her first pelvic health class after physical therapy school. The class blew her mind and she knew the neuroscience of pain was the way to help patients with persistent pelvic pain. She quickly developed her skills and started to understand how to apply the neuroscience of pain to her practice.
She creates a space with her patients to make them feel safe and trusts them to choose their own treatment path. She assesses their tissues, looking for any signs of adherence, and then checks their nervous system to see how it responds. Through this practice, she helps to rewrite the painful stories her patients have been told and shows them that physical therapy can provide them with lasting relief.
In this episode, you will learn the following:
1. How does physical therapy help treat chronic pain and persistent pain conditions?
2. How does the relationship with a therapist impact a patient's improvement?
3. How can physical therapists use neuroscience to assess and treat pelvic pain?
Resources:
International Pelvic Pain Society - https://www.pelvicpain.org/
Drayer Physical Therapy for northeast USA - https://drayer.urpt.com/
Upstream Rehabilitation for across USA - https://urpt.com/
Other episodes you'll enjoy:
Lichen Sclerosus and Overactive Pelvic Floor - https://youtu.be/mxQjC3jEoYg
Dr. Rachel Rubin: Unlocking Clitoral Fusing Through Non-surgical Lysis - https://youtu.be/F5KO5LGXRx0
Vulva Checks for Lichen Sclerosus: Everything You Need To Know - https://youtu.be/E9fnXDh5up4
Connect with me:
Instagram: https://www.instagram.com/lichensclerosuspodcast/
YouTube: https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ
Website: https://lssupportnetwork.org/
If this episode was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate.
Loved this episode? Leave us a review and rating here: https://lovethepodcast.com/lspodcast
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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In this podcast episode, Dr. Rachel Rubin sheds light on the startling truth that 23% of all women suffer from Clitoral Adhesions and how her innovative stretching procedure has resulted in a 76% decrease in pain and a 64% increase in orgasm rate for these women. "We have so much work to do because no one taught your doctor how to examine a clitoris. No one. They never learned. They feel like it's not their space and it's not their place, and they feel weird of, what am I looking for? No one ever taught me how to do this." Dr. Rachel Rubin is a urologist and specialist in sexual medicine outside of DC. She has a fellowship in sexual medicine and sees all genders, specializing in pelvic pain, vestibulodynia, hormone issues, and Lichen Sclerosus. Dr. Rachel Rubin was shocked to discover that 23% of all women have some degree of clitoral adhesions. She developed a non-surgical lysis procedure, which combined topical hormones and manual stretching to break up the tissue. Through her research, she found that this method had a 76% decrease in pain and 71% increase in sexual satisfaction. Furthermore, 64% of the women experienced improved orgasmic ability, with six of the women in the study achieving orgasm for the first time. Dr. Rubin was delighted to have found such an effective, non-invasive treatment for clitoral adhesions. In this episode, you will learn the following: 1. Discover why 23% of all women have some degree of clitoral adhesions and what symptoms this can cause. 2. Learn about a new procedure that can help 76% of women reduce pain, improve satisfaction with sex, increase sexual arousal, and even help 64% of women achieve orgasm for the first time. 3. Uncover the secrets to treating lichen sclerosus optimally before any procedure is done, including what hormones and topical treatments can be used.
Resources:Check out all the ways Lichen Sclerosus Support Network can help you at https://lssupportnetwork.org.
Read Dr. Rubin’s blog on the study of non-surgical lysis of clitoral adhesions at https://www.rachelrubinmd.com/post/new-research-on-clitoral-adhesions
Connect with Dr. Rubin
Website - https://www.rachelrubinmd.com/
Instagram - https://www.instagram.com/drrachelrubin
Twitter - https://twitter.com/drrachelrubin
Facebook - https://www.facebook.com/DrRachelRubin/
Linked In - https://www.linkedin.com/in/rachel-rubin-7433b0134/
Learn more about anatomical changes caused by Lichen Sclerosus in our blog - https://lssupportnetwork.org/architectural-changes-lichen-sclerosus/
Connect with us:
Instagram: https://www.instagram.com/lichensclerosussupportnetwork/
YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork
Website: https://lssupportnetwork.org/
If this episode was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate.
Loved this episode? Leave us a review and rating here:
https://lovethepodcast.com/lspodcast
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our
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Hey! Welcome! I'm on a bit of a hiatus with Podcast as I build out Lichen Sclerosus Support Network, but, when my girl Jaclyn from The Lost Labia Chronicles told me about her latest project, I was like, "girl, we need to make a podcast episode and let our community know". So here we are! If you experience a lot of stress from living with lichen sclerosus, you definitely want to listen to this amazing opportunity that I just know you will want in on.
Vagus Nerve and Lichen Scleorsus Workshop June 21 and 23 6-8 PM EDT - Get all the information and signup at lostlabia.com/stressworkshop.
If you are in the Philadelphia or Fl area I will be in your area soon for an in-person meetup! Signup for our newsletter at lssupport.net to get notified about dates and times.
As always feel free to email me at [email protected].
Mentioned in this episode:
2025 Wholistic Healing Summit
Join the Lichen Sclerosus Support Network for our 5-day virtual event! Connect with experts, find community, and gain practical tools to thrive. Sessions include: new treatments, intimacy, self-care, and more.May 12-16, 2025. Virtual event.Register now: https://lssupportnetwork.org/whs
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