Lichen Sclerosus Podcast: Recent Episodes
Kathy
Our journal of learning about and living with Lichen Sclerosus from a patient's point of view. Bringing community and awareness to a disorder that hardly anyone knows about. Join me as I research Lichen Sclerosus from every angle and share my struggles living with it. My hope is to build a community of survivors so we can affect change in our lives and the research.
Living with vulvar lichen sclerosus (VLS) can really shake things up, especially when it comes to feeling confident and connected in your intimate life. You're not alone! A huge 94.3% of our community shared that VLS has impacted their sexual health, with pain, fear, low desire, and feeling "broken" or "frustrated" as common struggles.
But here's the amazing news: You don't have to stay there. We heard your calls for more support and resources, and that's why we're so excited to bring back our special workshop, "Get Your Sexy Back," in 2025!
This isn't just any workshop. We've poured our hearts into making this a safe, empowering space specifically for people with VLS. We've teamed up with Shauna, a somatic sex educator who truly understands chronic pain, to guide you on a journey of self-discovery and sexual rebirth.
What to expect from "Get Your Sexy Back":
- Small, Intimate Group: We keep things cozy (only 20 spots!) so you can build trust and connect with others who truly get it.
- Safe & Private Space: All sessions are held in our private, off-social-media community, where your privacy and comfort are our top priority.
- You-Focused Journey: This workshop is all about you! We'll help you rediscover your body, your desires, and your confidence before bringing in partner dynamics.
- Expert Guidance: Learn from Shauna, our amazing somatic sex educator, and gain insights from a healthcare provider on pain management during sex.
- Transformative Practices: Each week builds on the last with practical tools and exercises to help you integrate what you learn into your daily life.
- Flexibility: Can't make a live session? No worries! Replays are available, and you'll have 24/7 access to our private community for ongoing support and connection.
- Welcome Party: Get to know your fellow participants in a low-stress, fun environment before diving into the deeper topics.
This workshop is for you if you:
- Are further along in your VLS journey and can experience mostly pain-free sex.
- Are ready to overcome mental blocks, low libido, fear, or embarrassment around intimacy.
- Want to confidently express your desires and boundaries.
- Are willing to engage and participate in practices for real transformation.
Ready to reclaim your pleasure and step into your full, confident self?
Limited Spots Available! Last time, 75% of seats were sold on day one. Our waitlist is already almost at 60 people, and we only have 20 spots!
Workshop Details:
- Welcome Session: July 24th, 2025
- Live Lessons: Weekly on Thursdays from July 31st through October 31st (with a break in September).
- Time: 4-6 PM Pacific / 7-9 PM Eastern
- Investment: $1200 (payment plans available: 4 monthly payments of $300) - and it's tax-deductible!
Learn more and register today at: lssupportnetwork.org/getsexy
Have questions? Check out our FAQ on the page or email us at support@lssupportnetwork.org. We're here for you!
LichenSclerosus #VLS #SexualHealth #WomensHealth #Intimacy #Empowerment #GetYourSexyBack #ChronicIllness #BodyPositivity #Nonprofit
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 summit@lssupportnetwork.org
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 research1.cvvd@gmail.com
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: support@lssupportnetwork.org
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.
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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.
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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 Mauskar 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.
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 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/
Virtual Meetup Information 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!
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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 episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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 Treatment with Dr. Jill Krapf
https://www.youtube.com/watch?v=NtFse-rcRwI
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/
Website: https://lssupportnetwork.org/
Loved this episode? Make a donation to help us create new content. https://lssupportnetwork.org/donate
Mentioned in this episode:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
-
What is the current understanding of the cause of Lichen Sclerosus, and what role do external stressors, diet, hormones, and trauma play?
-
How can topical steroids be effectively used to manage Lichen Sclerosus?
-
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
-
How does physical therapy help treat chronic pain and persistent pain conditions?
-
How does the relationship with a therapist impact a patient's improvement?
-
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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:
Reconnecting and Healing with the 2024 Wholistic Healing Summit
Does Lichen Sclerosus make you feel isolated or affect your relationships? You're not alone. The Lichen Sclerosus Support Network's Wholistic Healing Summit is here to help you find connection, support, and healing.This free, virtual event focuses on "Reconnecting & Healing." Gain expert knowledge on managing LS; learn strategies for communicating with your family, friends, and partner; get tools to improve the intimacy in your relationship; and discover tips to prioritize your well-being. Join empowering sessions, connect with others who understand, and learn from top medical professionals.Secure your spot today. Don't miss out—visit http://www.lssupportnetwork.com/whs and register today. Let's start this journey to greater understanding, connection, and healing together!
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 kathy@lssupport.net.
Today we talk to Shauna Farabaugh, a somatic sex educator about how it can help us have a sexual rebirth.
Shauna is one of our Holistic Healing Summit speakers. We hope you can join us. With over 30 sessions dedicated to approaching LS from a whole-body approach, there's something for every LS Warrior.
Find out more at holistichealingsummit.live
We're excited to announce the Get Your Sexy Back program! If LS has taken your mojo and you're ready to take it back this is the class for you!
Find out more at lswarrior.com/rebirth
Want to reach out to Shauna? Awesome!
Email her at farabaugh.shauna@gmail.com.
And check out her website at
sexualityintransition.com As always email me at kathy@lssupport.net and follow me on IG @lichensclerosuspodcast!
I am so excited to bring you Angie Alt! Angie is a Certified Health Coach with the Institute of Integrative Nutrition as well as a Functional Nutritional Therapy Consultant with the Nutritional Therapy Association. She's one of the originators of the Autoimmune Protocol, also known as AIP. Listen as she walks us through her LS story and discovers diet and lifestyle changes that keep her in remission for 19 years.
If you want to work with Angie or become an AIP certified trainer check out the links below.
www.autoimmunewellness.com
sadtoaip.com for AIP coaching program
www.aipcertified.com
Shout out to Lichen Sclerosus Support Network. We're currently working on our annual Holistic Healing Summit. We need volunteers. If you can donate some of your time please fill out our volunteer form at lssupport.net/volunteers.
If you're in need of support, join us in the next LS Support Virtual Meetup. Signup at lssupport.net/connect for more details.
Were you given a steroid treatment for your LS but not told when or how to use it? Or were the directions unclear, but you're not sure where to turn to for information?
Don't worry because we get answers to those questions in this episode and more with Dr. Jill Krapf, leading LS researcher and specialist.
To contact and work with Dr. Krapf, go to www.cvvd.org and fill out their contact form or call them. You can also follow Dr. Krapf on Instagram and Facebook @jillkrapfmd.
Thanks to, Lichen Sclerosus Support Network (LSSN). LSSN is helping get people diagnosed earlier and get the treatment and care they deserve. Follow them on IG and FB @lichensclerosussupportnetwork and visit their new website lssupportnetwork.org.
Also, be sure to check out our membership at lssupport.net/joinwarriors.
Or join us every other Saturday in the free virtual meetups. Find out more information and signup at lssupport.net/connect.
It's a new year and a perfect time to set goals. I'm not just talking about life goals, either. I'm talking about health goals!
We set at least one life and one LS goal we want to work on inside our private membership. Every week we set mini-goals to get us to our big goals.
And let me tell you, this process WORKS. We've had so many amazing transformations working through this process.
In this episode, I walk you through why it's important to set health goals and how to start doing it.
If you're interested in working towards your goals with a group of like-minded women, join the LS Warriors today! We're just getting started. We have our first live meeting on 1/14/22. We'll be working together towards acceptance and resilience for the next five months.
Jump on the train and start making headway on your health journey. Let us support you along the way.
Go to lssupport.net/joinwarriors to get your first month free.
I can't wait to see you in the membership.
If you have any questions feel free to email me at kathy@lssupport.net.
Welcome. If you’ve been listening to the podcast for a while, I want to give you a shout-out and thank you for sticking with me this year. This was the year of transition, and because of that, there weren’t very many episodes published, but you kept coming back. I appreciate you so much!
If you’ve just found me, I want to thank you for listening, and I hope you get value out of it. At the very least, know that you are not alone.
Since this is the last episode of 2021, I thought it would be fun to look back at the top five episodes of the year. These are fan favorites, and I totally get why. So if you’re looking for something to keep you busy while I’m away for the next two weeks, get ready to mark these down so you can listen to them later.
In no particular order, the first episode is my interview with Dr. Jill Krapf, titled “How are reproductive age women and steroids similar, with Dr. Jill Krapf.” This episode discusses research into younger women with Lichen Sclerosus and the proper way to use ultra-potent steroids as a treatment. You can access the episode at lssupport.net/drjill.
The next episode is all about appointment anxiety. It’s titled “How to Snap Out of Appointment Anxiety.” I share a recent experience of appointment anxiety and the techniques I used to snap out of it. Go to lssupport.net/appointmentanxiety to listen to this episode and for complete show notes.
The next episode is “The Lost Labia Journey: Finding Community.” If you’re looking for inspiration and hope to get you through the tough times, this is the episode for you. Jaclyn is an LS Warrior, as well as an LS advocate. This is the second episode of a two-part series detailing her more than decade-long battle with LS. We find out how she not only learned to manage her disease but used it to better the lives of others living with LS.
She is now the author of The Lost Labia Chronicles blog, which you can find at Lostlabia.com, and has recently released her first eBook, titled “Three Key Things To Have In Place When You Have Vulvar Lichen Sclerosus,” which you can get for free at lostlabia.com/ebook.
Listen to her episode at lssupport.net/findingcommunity.
Have you listened to Ashley Stump PFPT’s episode “Pelvic Floor Physical Therapy Can Help You Feel Better”? It’s the next top five episode of 2021.
If you’ve ever wondered or thought about PFPT, this is the episode for you! Ashley shared so much amazing information on how PFPT can help those of us with LS. Check it out at lssupport.net/pfpt.
“Lichen Sclerosus And Diet? Does The Research Look Good?” rounds out the top five. Dietitian Erica Eberl did a deep dive into LS research, looking for any connection between diet and LS. You can listen to what she found and more at lssupport.net/diet.
I couldn’t leave you without mentioning an honorable mention: “How to keep your quality of life with Lichen Sclerosus.” Have you stopped doing things you loved, using your favorite products, or eating your favorite foods because you heard it wasn’t good for your LS? I’m here to ask you, “How do you know?” Before you go letting LS dictate how and what you do in your life, listen to this episode, lssupport.net/lscontrol.
I hope you have a happy new year, and I look forward to talking to you in 2022.
Today I am joined by the amazing dermatologist, Dr. Sandy Flann, who is an expert on pediatric Lichen Sclerosus. Yes, you heard that right, Pediatric Lichen Sclerosus!
As we know, Lichen Sclerosus can affect anyone, of any age - children included. Unfortunately, there is a lack of research and resources for parents of children with Lichen Sclerosus. So, today we're going to find out about treatment, what to look for, the progression of symptoms, and how we can help our children become comfortable in their skin.
This is an important episode if you have a child with LS, or if you plan on having children (as it’s important to know some of the warning signs to be able to advocate for your child). Furthermore, because there may be a genetic component to LS, you never know who in your family you may be able to help.
I want to thank our sponsor, Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping get people diagnosed earlier and get the treatment and care they deserve. Follow them on IG and FB @lichensclerosussupportnetwork and visit their website lssupport.net.
Also, be sure to check out our membership at lssupport.net/joinwarriors.
Or join us every other Saturday in the free virtual meetups. Find out more information and signup at lssupport.net/connect.
Visit lssupport.net/kidls for full show notes.
Hey, welcome. In this episode, I decided to take a little break from the interviews, and speak from the heart. This is something I felt compelled to speak on. I want to talk about not letting Lichen Sclerosus control your life; not letting it rob you of the vibrant and wondrous person you are.
I want to thank our sponsor, Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping get people diagnosed earlier and get the treatment and care they deserve. Follow them on IG and FB @lichensclerosussupportnetwork and visit their website lssupport.net.
Also, be sure to check out our membership at lssupport.net/joinwarriors.
Or join us every other Saturday in the free virtual meetups. Find out more information and signup at lssupport.net/connect.
Visit lssupport.net/lscontrol for full show notes.
Hey! Welcome!
Have you ever wondered what lube is best for Lichen Sclerosus? Perhaps you felt overwhelmed by the massive selection of lube options online and had no clue what to buy? Have you ever wondered what you should look for and avoid in a lube? If yes, this is the episode for you!
Today I am here with my amazing friend and follow LS warrior, Jaclyn, from The Lost Labia Chronicles, and we are going to be talking about lubrication, artificial lubrication, that is. But before we jump into this, click here to subscribe to The Lost Labia Chronicles, which dives into sex, mental health, and Lichen Sclerosus through blogs and YouTube videos. I’m am so happy to be here with my girl to talk with y’all about lube (what kind of lube is right for you, Jaclyn’s experience with dilators and lube, what you want to consider in choosing a lube, etc).
I want to thank our sponsor, Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping get people diagnosed earlier and get the treatment and care they deserve. Follow them on IG and FB @lichensclerosussupportnetwork and visit their website lssupport.net.
Also, be sure to check out our membership at lssupport.net/joinwarriors.
Visit lssupport.net/lubes for full shownotes.
Today, I am here with Dr. Cynthia Wesley (aka Dr. Cyn), a board-certified OBGYN with over 16 years of experience and a vulvar skin expert. Dr. Cyn is passionate about vulvar care, hygiene, and grooming. She will share her tips on how to take care of your vulva when you have Lichen Sclerosus.
We discussed everything from using the bathroom, bathing, moisturizing, hair removal, and more. So many great tips in here.
Resources mentioned in the episode:
Dr. Cyn’s website: drcynobgyn.com
Dr. Cyn’s exclusive vulvar products waitlist: beautybelowmd.com
Pre-order Dr. Cyn’s new book here: beautybelowbook.com
Dr. Cyn’s social media: @drcynobgyn on Facebook and Instagram
For complete show notes and all the links mentioned in this episode visit lssupport.net/grooming.
Thank you to our sponsor, Lichen Sclerosus Support Network. Working towards getting people diagnosed earlier and getting treated better. Be sure to follow them on IG and FB @lichensclerosussupportnetwork and visit their website lssupport.net.
Also, be sure to check out our membership at lssupport.net/lswarriors.
Hey welcome!
This week I'm so excited to finally publish this episode with Ashley Stump. She's a pelvic floor physical therapist who knows all about Lichen Sclerosus.
I learned so much during this episode, we talked about what pelvic floor physical therapy is, why women with Lichen Sclerosus need it, what to expect on your first visit, and we talked about lubes.
We talked about so much, so much gold and she even gave us tips on what to look for when you're looking for a new pelvic floor physical therapist, and some resources are where to find one.
For complete show notes and all the links mentioned in this episode visit lssupport.net/pfpt.
Thank you to our sponsor, Lichen Sclerosus Support Network. Working towards getting people diagnosed earlier and getting treated better. Be sure to follow them on IG and FB @lichensclerosussupportnetwork and visit their website lssupport.net.
Also, be sure to check out our membership at lssupport.net/lswarriors.
If you're seeing two of these or getting this episode really late, apologies. I realized half of my listeners didn't get the episode because I released it in video format versus audio. 🤦🏽♀️ Either way everyone should have at least one version of the episode.
Thanks for understanding.
Heeeyyy! Longtime no see. lol
Life has been busy and a bit hectic and I'm ready to let you in on everything that's been going on. And the most exciting news. You'll be getting new episodes starting Nov 5!
First off we have incorporated Lichen Sclerosus Support Network and we are an official not-for-profit! Find out what we've been doing and what our future plans are.
Want to volunteer?
lssupport.net/volunteer
Want to donate?
lssupport.net/donate
Secondly, my family caught covid and my husband and I ended up in the hospital. It's turned our world upside down. My husband, Lorenzo, still hasn't made it home.
Lorenzo was our source of income so I could concentrate on educating and supporting people with LS. With him not being able to work everything is a little up in the air.
If you would like to help us during this time we would deeply appreciate it. You can donate at
https://gofund.me/50b5eada
or
https://venmo.com/u/Kathy-Ruiz-Carter
So I hope this catches you up to speed and you're prepared for some amazing interviews.
Excited to be with you again.
Feel free to email me at kathy@lssupport.net.
Heeeyyy! Longtime no see. lol
Life has been busy and a bit hectic and I'm ready to let you in on everything that's been going on. And the most exciting news. You'll be getting new episodes starting Nov 5!
First off we have incorporated Lichen Sclerosus Support Network and we are an official not-for-profit! Find out what we've been doing and what our future plans are.
Want to volunteer?
lssupport.net/volunteer
Want to donate?
lssupport.net/donate
Secondly, my family caught covid and my husband and I ended up in the hospital. It's turned our world upside down. My husband, Lorenzo, still hasn't made it home.
Lorenzo was our source of income so I could concentrate on educating and supporting people with LS. With him not being able to work everything is a little up in the air.
If you would like to help us during this time we would deeply appreciate it. You can donate at
https://gofund.me/50b5eada
or
https://venmo.com/u/Kathy-Ruiz-Carter
So I hope this catches you up to speed and you're prepared for some amazing interviews.
Excited to be with you again.
Feel free to email me at kathy@lssupport.net.
Hey!!! Welcome! I'm so happy you're here.
I've got some AMAZING news.
We have released the searchable provider directory!
It's ready for you to explore. It's brand new so we have to work out all the kinks as we grow it but it's better than nothing.
https://lichensclerosuspodcast.com/searchable-lichen-sclerosus-provider-database/
We have some equally exciting news.
We are turning Lichen Sclerosus Support Network into an official nonprofit! Our mission will be to prevent the negative emotional and mental health effects that can come with an LS diagnosis.
That's right we are going to spread the message even further and help more people.
So if you can help, please do your part because it's going to take the whole community.
Check out our new webpage and read all about the exciting things we have coming.
https://lichensclerosuspodcast.com/nonprofit
Donate:
https://fundly.com/lichen-sclerosus-support-network#
I can't wait to hear your reaction. Let me know what you think and how you can help the community. Email me at kathy@lichensclerosuspodcast.com or DM me on IG @lichensclerosuspodcast.
Hey! Welcome! I’m so glad you are here with us today! We are going to shake this up a bit and have a live round table discussion about the concepts of acceptance and resilience with some members of the LS Warriors membership. The concepts of acceptance and resilience are critical to living with a disease such as Lichen Sclerosus. In this round table discussion, I will ask our participants a series of questions relating to these concepts and Lichen Sclerosus.
I would love to hear your thoughts on acceptance and resilience. Email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast.
Join our next LS Support Virtual Meetup from 2-4 and 7-9 PM EST. at https://lssupport.net/connect.
Or join LS Warriors for 24/7 support and information. https://lssupport.net/lswarriors.
Reach out to Jaclyn by email at lostlabiachronicles@gmail.com or DM her on IG @thelostlabiachronicles.
Also, be sure to join her email list so you get notified when she releases a new blog post. https://lssupport.net/jointllc
Support our sponsor Lichen Sclerosus Support Network by following them on IG @lichensclerosussupportnetwork and check out their website https://lssupport.net for all the ways they can support you on your LS journey.
I’m so glad you are here with us today. In today’s episode, we are joined by Jen, one of the LS Warriors! She is here to share the amazing story of her journey with Lichen Sclerosus. Jen’s journey involves a traumatic birth and a lot of stress to her vulva and vagina. She discusses what this process was like, how her symptoms manifested after the birth of her daughter, her diagnosis, and how she now deals with stress and Lichen Sclerosus.
If you want to reach out to Jen, you can message her on Twitter and/or Instagram @jenpatala.
Email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast.
Join our next LS Support Virtual Meetup from 2-4 and 7-9 PM EST. at https://lssupport.net/connect.
Or join LS Warriors for 24/7 support and information. https://lssupport.net/lswarriors.
Reach out to Jaclyn by email at lostlabiachronicles@gmail.com or DM her on IG @thelostlabiachronicles.
Also, be sure to join her email list so you get notified when she releases a new blog post. https://lssupport.net/jointllc
Support our sponsor Lichen Sclerosus Support Network by following them on IG @lichensclerosussupportnetwork and check out their website https://lssupport.net for all the ways they can support you on your LS journey.
Today we are joined by Erica Ebrel, a registered dietician and fellow Lichen Sclerosus warrior. Erica is here to talk to us about the relationship between the food we eat and Lichen Sclerosus. She is going to tell us all about what the research says, what we should do if we are interested to know if diet impacts our Lichen Sclerosus, and weighs in on some popular Lichen Sclerosus diets (e.g., low-oxalate).
I am so grateful for this amazing conversation with Erica. If you want to reach out and talk to her, you can find her on Instagram @ericasappletite or email her at ericaeberl.dietition@gmail.com.
Let me know if diet affects your LS or if you're trying to figure that out. Email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast.
Join our next LS Support Virtual Meetup from 2-4 and 7-9 PM EST. at https://lssupport.net/connect.
Support our sponsor Lichen Sclerosus Support Network by following them on IG @lichensclerosussupportnetwork and check out their website https://lssupport.net for all the ways they can support you on your LS journey.
This week we're talking to Heather Cooan once again. If you did not get a chance to check out Heather's diagnosis story, which were the previous two episodes, go back and listen because she shared her amazing story of how she found out she had vulva cancer and how it changed her life. Post healing she was looking for how she could get into the natural healing space to pay it forward and help other women. This led her to her new field and love of nutrition, where she ultimately become a nutrition therapy practitioner and a functional diagnostic nutrition practitioner.
Today we’re going to find out exactly what they do and how she could help us heal our Lichen Sclerosus.
If you’re interested in leaky gut or how hormones or food sensitivities trigger our LS this is the episode for you.
Find out what buckets are triggering your health issues by taking Heather's test at https://heathercooan.com/lspodcast.
While you're there be sure to schedule a free consultation with Heather and follow her on her social media platforms.
Email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast and let me know your experiences with nutrition.
Or better yet join our next LS Support Virtual Meetup every other Saturday from 2-4 and 7-9 PM EST. at https://lssupport.net/connect and tell me in person.
Support our sponsor Lichen Sclerosus Support Network by following them on IG @lichensclerosussupportnetwork and check out their website https://lssupport.net for all the ways they can support you on your LS journey.
Today we are joined (again) by therapeutic nutrition consultant, LS warrior, and cancer survivor, Heather Cooan. Last episode we heard her diagnosis story. Unfortunately, Heather went undiagnosed for over 25 years, allowing her Lichen Sclerosus to develop into vulvar cancer. This was a gross failure of the medical system.
In today’s episode, we learn how Heather advocated for herself and fought for her values. Today her Lichen Sclerosus is in remission and she is now cancer-free! Her story reminds us of the importance of self-advocacy in the medical realm.
Be sure to subscribe so you don't miss the next episode where Heather details how a Nutrition Therapist can help us get healthy.
I want to hear from you. What has advocating for yourself done in your life? Email me at kathy@lichensclerosuspodcast or DM me on Instagram @lichensclerosuspodcast.
I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring awareness, information, education, and most importantly support to all Lichen Sclerosus warriors.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork.
Resources:
If you are in the Phoenix area, check out Dr. Joseph Brook’s here: https://www.arizonaspecializedgynecology.com/provider/joseph-brooks-md
Dr. Bhoola: https://arizonaoncology.com/covid19/
If you are battling vulvar cancer, check out the vulvar cancer awareness forum here: https://www.facebook.com/vulvarcancerawarenessforum/
For nutritional consultations, see Heather’s website: https://heathercooan.com/
If you haven't joined the email list for The Lost Labia Chronicles, a blog about beating Lichen Sclerosus, you want to do that today.
https://lichensclerosuspodcast.com/lost-labia-chronicles-landing-page/
Be sure to follow her on IG and FB @thelostlabiachronicles.
Today we are joined by therapeutic nutrition consultant, LS warrior, and cancer survivor, Heather Cooan. Heather’s journey from how the medical system let her down to self-advocacy and taking control of her health and body is nothing short of incredible.
Her story will be told in two parts. Today, we begin with when Heather’s symptoms first began to manifest, how they impacted her life, and how she was repeatedly let down by the system.
Email me at kathy@lichensclerosuspodcast.com or DM me on IG @lichensclerosuspodcast and let me know what you thought of Heather's story so far.
I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Virtual Meetup Information 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. Perhaps share your experience with the system letting you down!
I have met so many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up at lssupport.net/connect for notifications and updates! Our next meetup is on March 20th, 2021. I cannot wait to meet you!
Resources:
For nutritional consultations, see Heather’s website: https://heathercooan.com/
If you are battling vulvar cancer, check out the vulvar cancer awareness forum here: https://www.facebook.com/vulvarcancerawarenessforum/
If you are in the Phoenix area, check out Dr. Joseph Brook’s here: https://www.arizonaspecializedgynecology.com/provider/joseph-brooks-md
Dr. Bhoola: https://arizonaoncology.com/covid19/
Hey! Welcome.
I'm excited to bring you the second part of my conversation with my LS sister, Jaclyn. In this episode, she shares what it took to go from suffering so bad she had to stop having sex with her new husband to having multi-orgasm sex multiple times a week.
I hope this story inspires you because you can do this too! I truly believe you can. It won't be easy but you absolutely can.
Please let me know if you're ready to start down the path back to health. We're here to support you.
Email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast.
Join our next LS Support Virtual Meetup from 2-4 and 7-9 PM EST. at https://lssupport.net/connect.
Ready for 24/7 support? Join the waitlist for LS Warriors. A family that understands what you're going through. https://lssupport.net/lswarriors
Reach ou/t to Jaclyn by email at lostlabiachronicles@gmail.com or DM her on IG @thelostlabiachronicles.
Also, be sure to join her email list so you get notified when she releases a new blog post. https://lssupport.net/jointllc
Support our sponsor Lichen Sclerosus Support Network by following them on IG @lichensclerosussupportnetwork and check out their website https://lssupport.net for all the ways they can support you on your LS journey.
Resources Mentioned In This Episode: Heather’s website: https://feminapt.com/ and her Instagram @theladypartspt
Want to buy Heather's book? Buy it at http://sexwithoutpainbook.com/ – use code LICHENS20 for 20% for a limited amount of time.
Hey! Welcome to the Lichen Sclerosus Podcast. I have a very special LS Warrior with us today, Jaclyn, who is going to share the story of her journey with Lichen Sclerosus. Her progression from feeling alone and hopeless to empowered and thriving is captivating! Jaclyn is truly a beacon of light in our Lichen Sclerosus community and her story is sure to captivate you.
This is the story of how Jaclyn began her Lichen Sclerosus journey with little information. While she had started to compile a team (i.e., her doctor, her sex therapist, her pelvic floor physiotherapist, her husband, friends, and family), she felt very alone in her diagnosis. She longed for community and connection.
Come back next week to hear about how Jaclyn found her community and how she is now able to have amazing, pleasurable, pain-free sex!
Join us at our next virtual meetup. 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 at https://lichensclerosuspodcast.com/connect for notifications and updates! Our next meetup is on March 6th. I cannot wait to meet you!
Need immediate help email me at Kathy@lichensclerosuspodcast.com or DM me on IG @lichenslcerosuspodcast.
I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus Warriors.
Be sure to follow them on IG and FB @lichensclerosussupportnetwork.
I am super excited to announce that Jaclyn will be starting her blog called The Lost Labia Chronicles, sponsored by the LSSN, which will go live next Tuesday (March 2nd, 2021).
Jaclyn is freaking amazing, and you will definitely want to follow her blog. I have watched this woman go through an amazing transformation, and her stories, her advice, and her wisdom are next level. In her blog she will take you through her journey, you will get all the raw, unfiltered emotions and feelings and learn how she got out of that dark space. Her story is one of hope.
Subscribe to her blog at lssupport.net/jointllc to get updates and notifications. Her first blog post will go live on March 2nd, but if you sign up before, you’ll get a sneak peek at her first post.
If you want to reach out to Jaclyn, you can DM her on Instagram or Facebook @thelostlabiachronicles or via email at lostlabiachronicles@gmail.com.
This week we talk about an awful drive I recently had to the doctor's office.
I was overtaken by negative thoughts and emotions of what the future might bring. Eventually, I pulled myself out of those negative thoughts and emotions so I could do what I needed to do.
I want to share with you my technique for staying in the present and changing my focus.
This podcast is brought to you by Lichen Sclerosus Support Network, providing information, education, and support for people with Lichen Sclerosus.
Find the full show notes at https://lichensclerosuspodcast.com/appointmentanxiety.
Follow me on IG @lichensclerosuspodcast or FB https://www.facebook.com/lichensclerosussupportnetwork
Announcing new Spanish LS podcast coming March 1, 2021. Linquen Escleroso, hosted by two LS Warriors bringing you the information and realness behind LS en español.
Signup now to be notified of updates at https://lssupport.net/spanish and follow them on IG @liquenescleroso.
Also announcing The Lost Labia Chronicles. A young woman's fight from crippling sexual pain, and vulvar dysmorphia to self-love, and multiple orgasm lovemaking. Learn how to beat LS at its own game.
Signup early for email notifications and get a peek at the first post before everybody else. https://lssupport.net/jointllc/
And follow her on IG @thelostlabiachronicles.
Does Lichen Sclerosus make penetrative sex painful for you? Has LS been a factor in a relationship breakup? Are you single and wonder if you'll ever be in a healthy relationship again?
These are all questions this week's guest had to confront. After the demise of her 10-year marriage, she was determined to find out what was happening to her body. It took many more years for her to get a diagnosis, find acceptance, and ultimately love. Not just romantic love but love for herself.
I invite you to listen to this brave woman's journey because it may just inspire you to take the first step on yours.
Carrie Bock is an anxiety and OCD counselor at By The Well Counseling. She also hosts Hope For Anxiety and OCD Podcast, which is all about decreasing shame, increasing hope, and developing a healthy relationship with God and others. Her podcast is available on all podcasting platforms.
If you would like to get in touch with or work with her you can follow her on IG @hopeforanxietyandocdpodcast, on FB @hopeforanxietyandocd, or check out her websites www.bythewellconsouling.com and www.hopeforanxietyandocd.com.
To get in touch with Carrie's doctor near Nashville go here. https://centerforpelvichealth.org/specialist/
Find the full show notes for this episode at https://lichensclerosuspodcast.com/hopeforanxiety.
Or if you would like to watch the video of this interview go to https://youtu.be/ziURuvnx81M.
If you haven't yet, sign up for our virtual meetup at lichensclerosuspodcast.com/connect. I am now offering the virtual meetup two times every other Saturday, 2-4 and 7-9 PM EST – come and connect with us! We'd love to have you be a part of our community. Share your story and ask questions in a safe space with others that get you.
I look forward to talking to you again next week.
Bye!
Welcome to season 2 of Lichen Sclerosus Podcast.
For our first episode, the esteemed Dr. Jill Krapf and I discuss new research into women of reproductive age with LS. This under-studied group is often misdiagnosed or turned away being told ridiculous things.
If you're between 18 and 50 and want to be part of the research head over to lichensclerosuspodcast.com/survey and fill out the questionnaire. Make your voice heard.
We also discuss how the proper application of steroids can make a difference to our disease. She lays out exactly how to use, when to use, and how often to use the medication.
I hope you enjoy this first episode back because I missed you and can't wait to start talking to you again.
If you haven't signed up for the virtual meetups yet, do it now! Go to lichensclerosuspodcast.com/connect. we meet every other Saturday from 2-4 and 7-9 PM EST.
You can follow Dr. Jill on IG @jillkrapfmd, the CVVD @the.CVVD, and myself @lichensclerosuspodcast.
To read the full notes go to lichensclerosuspodcast.com/drjill.
I hope you have an amazing week and I will talk to you next time.
Bye!
I woke up this Thanksgiving with a message of gratitude on my heart.
Please don't let the fear and anxiety of Lichen Sclerosus pull you from the joy and happiness in your life. Find and focus on the pockets of gratitude and positivity.
Make sure you sign up for next months virtual meetup at https://www.subscribepage.com/lsconnect
And don't forget to follow me:
IG - https://www.instagram.com/lichensclerosuspodcast/
FB - https://www.facebook.com/lichensclerosussupportnetwork
Fresh off the first Lichen Sclerosus Podcast Virtual Meetup I'm excited to bring fresh insights.
As I'm sure you know because you live it Lichen Sclerosus does terrible things to our sex life. Sometimes stopping it completely.
This week we look at how our libido is impacted by LS and how we can get it back.
There's tons of information to look at. All links will be on the website show notes page at https://lichensclerosuspodcast.com/libido.
Make sure you sign up for next months virtual meetup at https://www.subscribepage.com/lsconnect
And don't forget to follow me:
IG - https://www.instagram.com/lichensclerosuspodcast/
FB - https://www.facebook.com/lichensclerosussupportnetwork
Here is the list of resources I used for this week's episode.
The Impact of Vulvar Lichen Sclerosus on Sexual Dysfunction
Decreased Desire
9 Drugs That Can Affect Your Sex Drive
Low Libido and Erectile Dysfunction Treatment
3 Ways Subconscious Mind Learns
8 Successful Mental Habits to Defeat Fear, Worry, and Anxiety
Ten ways to fight your fears
I'm so excited to bring back one of my favorite guests. Lou!
If you don't know who Lou is go back and listen to the episode "Lou's Diagnosis Story". She is so much fun and I could not wait to speak with her again.
We go in-depth on my story and discuss some of the decisions I made.
My hope is that you learn something from my experiences or at the very least know that you are not alone.
Please reach out:
IG - https://www.instagram.com/lichensclerosuspodcast/
FB - https://www.facebook.com/lichensclerosussupportnetwork
Website - lichensclerosuspodcast.com
Don't forget to signup for the virtual meetup. - https://www.subscribepage.com/lsconnect
This week four Lichen Sclerosus Warriors share their diagnosis stories with us. Although each of their stories is individualized they all have similarities to our own.
LS can be such a lonely disease but by sharing our stories we realize there are thousands of women feeling and going through what we are going through.
I hope you feel a little less alone today after listening to this episode.
Don't forget to signup for the Lichen Sclerosus Podcast Virtual Meetup - https://lichensclerosuspodcast.com/connect/
Other episodes mentioned:
The Mental Side of Lichen Sclerosus - https://lichensclerosuspodcast.com/the-mental-health-side-of-lichen-sclerosus/
Why I hesitated to check my vulva but you shouldn't delay. - https://lichensclerosuspodcast.com/time-to-check-your-vulva/ Do you need a support group? - https://lichensclerosuspodcast.com/do-you-need-a-support-group/ How to still have a great relationship despite Lichen Sclerosus - https://lichensclerosuspodcast.com/how-to-still-have-a-great-relationship-despite-lichen-sclerosus/ Get in touch with me: Instagram @lichensclerosuspodcast FB @lichensclerosussupportnetwork Website https://lichensclerosuspodcast.com/ Email kathy@lichensclerosuspodcast.com
Have you ever thought about how LS will or has affected your relationship? How it has or will affect your partner?
This week I was inspired by a DM I received on Instagram from a young man looking to support his companion. The love and care he expressed sent me looking for actionable tips for how we can maintain healthy happy relationships despite LS.
Listen to find out how we can support each other in our relationship, how our partners can support us, and how we support our partners.
So grab your partner. Sit down and listen together. This episode is guaranteed to spark conversations.
Let me know which was your favorite tip. What came out of it for your relationship?
Reach me on IG @lichenscperosuspodcast, FB @lichensclerosussupportnetwork, or email me at Kathy@lichensclerosuspodcast.com.
Don't forget to signup for the first LSP Virtual Meetup on November 14, 2020. Go to https://www.subscribepage.com/lsconnect
Do you have the itch?
You know the one I'm talking about. The one that makes your vulva feel like ants are crawling all over it. That unforgiving desire to scratch.
Yeah, that one.
This week we discuss why we itch when we do and I give you seven ways ladies combat the itch.
As always don't forget to subscribe and share.
Follow me on Instagram @lichensclerosuspodcast and on FB @lichensclerosussupportnetwork.
Full show notes at lichensclerosuspodcast.com/vulvaritch
This week I make my contribution to World Mental Health Day.
I am super passionate about the aspect of mental health in Lichen Sclerosus.
In this episode, we discuss what research has been done on Lichen Sclerosus and mental health as well as hear from some Lichen Sclerosus sisters and their thoughts on LS and mental health.
If you need help with mental health please reach out. I'm always available even if it's just to talk. I shared lots of resources in this episode so please don't suffer in silence.
Website - lichensclerosuspodcast.com/mentalhealth
IG - @lichensclerosuspodcast
FB - https://www.facebook.com/lichensclerosussupportnetwork
Resources:
Psychological and psychiatric morbidity in lichen sclerosus in a cohort recruited from a genitourinary medicine clinic - https://pubmed.ncbi.nlm.nih.gov/19917638/
Vulvar lichen sclerosus et atrophicus - https://www.jmidlifehealth.org/article.asp?issn=0976-7800;year=2017;volume=8;issue=2;spage=55;epage=62;aulast=Nair
My Vulva Burned Like It Was On Fire, Then I Got A Diagnosis That Changed My Life - https://www.refinery29.com/en-gb/2019/01/221855/vulva-disease-lichen-sclerosus-cancer
Dr. Sanaza’s website - https://www.alchemyoftrauma.com/
Dr. Sanaza on Instagram @dr.yaghmai
Previous episodes referenced in this episode:
Lou's Lichen Scleorsus Diagnosis Story - https://lichensclerosuspodcast.com/lou
My Diagnosis Story: Dr. Sanaz Yaghmai - https://lichensclerosuspodcast.com/my-diagnosis-story-dr-sanaz-yaghmai/
Lichen Sclerosus Symptoms - https://lichensclerosuspodcast.com/symptoms
Do you need a support group? - https://lichensclerosuspodcast.com/supportgroup
Emma Norman and Clair Baumhaur’s Accounts
Facebook - https://www.facebook.com/groups/221930761513570/
Website - https://lsvcukawareness.weebly.com/
Twitter - https://twitter.com/LSclerosus & https://twitter.com/Vulvalcanceruk
Instagram - https://www.instagram.com/lichensclerosusuk/ & https://www.instagram.com/vulvalcancerukawareness/
Did you know you were supposed to check your vulva each month?
Yep!
But what exactly does that mean? What are we looking for? What do we do if something doesn't look right?
In this episode, I share my first experience checking my vulva and provide you with step-by-step directions on how to check yours.
First time I checked my vulva So here's the thing. I started this podcast. Being completely ignorant of the practical knowledge needed to be known with Lichen Sclerosus.
I didn't know I was supposed to be checking my vulva until I started going on Instagram and following some wonderful accounts that gave me so much information.
So I started seeing posts saying, "It's time of the month to check your vulva." And I'm like, "Okay. I'm supposed to check my vulva. Oh, okay. I didn't know that my doctor didn't tell me that."
I can be really bad at taking care of myself and weeks went by without me checking before I saw another post telling me to check my vulva. Then a whole month past and the original account posted again to check my vulva.
Now I'm like, okay, am I stalling or what is going on? So I had to really think about it. Why am I not just doing it? It's not that I'm prudish. I've touched myself before. I've looked when there was something that didn't feel right. So what was the deal?
I realized I was scared. I was petrified of what I might see because by this time I've started feeling changes to my anatomy. I've seen the pictures all over Google. I've seen the white spots. I've seen the lesions. I've seen the blisters.
My first blister in 2018 freaked me out and sent me to the doctor. I didn't want to see that again. That scared the crap out of me. Subconsciously I was stalling because I was scared.
Once I came to the realization I was scared, I set a date to check my vulva.
Can I tell you? As the day got closer I was getting more nervous. I was anxious and had butterflies in my stomach. I felt ridiculous and dumb but I couldn't help it.
So the day comes and I go about my day. I have multiple opportunities where I can do it, but I want to wait until everybody goes to sleep. I'm like, okay, I'm going to treat this like a date. So I'm going to get up. I'm going to shower. I'm going to shave because I wanted to make sure I can see everything that's going on.
Once I'm ready I get my little mirror that's perfect.
I lay down on the bed. Try to get comfortable.
I start checking the check from the top to the bottom. The way we're going to talk about it.
And.
Yeah, I'm not seeing what I was afraid of. There was no reason for me to be afraid. None whatsoever. And once I did it. It was like a relief. It's done. It's over with.
Until next month.
But I think the first I was the worst time because, after that, I knew what to expect.
Why did I share this? My whole point in telling you this story is to say if you haven't checked yourself and you know you need to check yourself, think about why it is that you haven't checked yourself. Be honest with yourself. It's okay to be scared.
I wish somebody would've told me that because I was really beating myself up.
I'm here to tell you you're not dumb. It's not stupid. You have every right to be anxious and nervous about what you might see, especially if you've been in some of these forums and groups or these medical pages and you've seen the pictures. They will put the fear in you.
So you are totally justified, girlfriend. But don't let that stop you because it's way too important. And chances are when you do look down there, you're going to be fine. You're going to be able to deal with whatever it is that you see and now you know. Isn't that a beautiful thing? Now you're not wondering. Now your brain isn't running away with itself.
Check out the website show notes to see @Talk_peach's IG post.
Other great Instagram accounts talking about checking your vulva. * https://www.instagram.com/vulvarcancerawareness/ + Vulvarcancerawareness * https://www.instagram.com/lichensclerosusuk/ + lichensclerosusuk * https://www.instagram.com/lichensclerosuspodcast/ + lichensclerosuspodcast
Virtual Meetup I have an idea for how we can stay connected. I want to do a monthly virtual meetup so we can connect and talk to each other and just hang out like girlfriends.
We can talk about Lichen Sclerosus. We can talk about life. We can talk about anything that we want to. And we can connect with other sisters who are going through the same things, who might have a little bit of knowledge that can help us.
And I want to see your faces. I love talking to you on Instagram. I love talking to you through email, but I want to see your faces too.
So if that's something that you think you might be interested in. I have a page set up at
lichensclerosuspodcast.com/connect.
If you want me to keep you informed as this develops. If you want to give me your input into what you might like. What you want to see. How you want to do it. What times are we good for you? If you want to do it! Then go to lichensclerosuspodcast.com/connect, enter your email address and I will email you weekly or biweekly and keep you updated.
Once we have enough people, then we can set a date and see each other! So the only way you'll be invited into the meetup is if you are on the email list, because, I'm going to shoot an email and there's going to have a password so we don't get zoom bombed.
So if you're interested signup today and let's meet up!
Is your train of thought, "I'm going to the doctor so they can tell me what's wrong and they can fix me."?
Yeah, mine used to be too. Until I started advocating for myself and made my doctor my partner in healthcare.
This week I give you my three-stage plan on how to create that partnership.
If you have any tips or tricks you use to advocate for yourself at the doctor's office please share them and I will add them to the show notes on the website.
Don't forget to subscribe and follow me on social media.
Instagram - https://www.instagram.com/lichensclerosuspodcast/
Facebook - https://www.facebook.com/lichensclerosussupportnetwork
Have you recently been diagnosed with Lichen Sclerosus or just started looking into it?
If so this is the episode for you. Today we talk about causes, symptoms, treatments, and best practices. This is not a know-all be all, it is the basics to get you started down a path of wellness and acceptance.
Don't forget to subscribe.
IG - https://www.instagram.com/lichensclerosuspodcast/
Facebook - https://www.facebook.com/lichensclerosussupportnetwork
This week I give you a health update and explain how I've been practicing giving myself grace.
Chronic illness can create changes in our lives that we do not like but have to accept. This is where I find myself at the moment. I don't like it but I have to treat myself with care or I will make it worse. So this episode is the four tips I give in week 4 of my 5-week program "Get OK with LS".
I hope they are as helpful to you as they are to me and the ladies that have been through my program.
Stay healthy, blessed, and loved.
Don't forget to subscribe and share.
Connect with me on IG @lichensclerosuspodcast and FB @lichensclerosussupportnetwork.
Has LS taken over most of your waking thoughts? Does it have you questioning your womanhood or sex appeal? Has it made you feel less than?
Then you need to listen to this episode. This week I speak with Dr. Anne Whitehouse who has developed a process to refocus our subconscious from our illness back onto the things that are truly important to us.
Through daily practice, she has been able to work through anxiety, stress, and fear brought on by the deeply engrained pressures put on us by society.
If you would like a chance to when a personally signed copy of Dr. Whitehouse's book, Pull Back Your Power, just leave the podcast a review and email me a screenshot at kathy@lichensclerosuspodcast.com.
Also, listen to a deep guided meditation lead by Dr. Whitehouse here https://www.feminineconfidence.com/self-nurturing-coral-clearing/.
To follow or find out more about Dr. Whitehouse find her links below.
website and social media links:
https://feminineconfidence.com
https://facebook.com/annewhitehousephd
https://facebook.com/groups/pullbackyourpower
https://www.linkedin.com/in/dr-anne-whitehouse-73163118/
https://www.instagram.com/feminine_power_alchemist/
This week I went off script and had a frank talk about what's been going on with me. It's so important to listen when your body is telling you to slow down or something is wrong.
Hopefully, I will be back to full strength next week and we will be back to your regularly scheduled program.
Don't' forget to follow me on social media so you can get notified of my live events.
Facebook - https://www.facebook.com/lichensclerosussupportnetwork/
Instagram - https://www.instagram.com/lichensclerosuspodcast/
Youtube - https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ
Website - https://lichensclerosuspodcast.com/
Our sister in Lichen Sclerosus, Lou from Australia, shares her diagnosis story with us. Her trials with everything from doctors to mental health.
Be prepared to smile and laugh because we had fun. And although our stories are individual to ourselves we share a lot of similarities.
So share in the sisterhood of LS. Also, stay tuned to the end for an exciting announcement.
Don't forget to subscribe to be notified of the next episode.
Instagram @lichensclerosuspodcast
Facebook @lichensclerosussupportnetwrok
Resources:
Video Lou shared with her partner - https://vimeo.com/168204328
Lou's doctor -
Dr. Kathy Cook Mercy Women's Hospital Heidleberg VIC https://health-services.mercyhealth.com.au/our-health-services/mercy-hospital-women/ The vulva clinic only runs on a Monday, and you'll need a referral from your GP to see her.
This week we dive into support groups. Why you may need one? Why they are important and what to look for in the right support group for you?
I'll also introduce you to two Facebook support group admins and let them tell you a bit about their groups.
Links for groups as follows:
Lichen Sclerosus Sclerosis UK Support Group For Women
Facebook - https://www.facebook.com/groups/221930761513570/
Website - https://lsvcukawareness.weebly.com/
Twitter - https://twitter.com/LSclerosus & https://twitter.com/Vulvalcanceruk
Instagram - https://www.instagram.com/lichensclerosusuk/ & https://www.instagram.com/vulvalcancerukawareness/
Lichen Sclerosus New International Women's Support Group
Facebook - https://www.facebook.com/groups/2446165235420118/
Lichen Sclerosus Support Network
Facebook - https://www.facebook.com/lichensclerosussupportnetwork/
Leia Mitchell and I are back with the second part of our conversation. This week we discuss clinical trial research around Lichen Sclerosus.
Leia tells us where the research is on LS mental health as well as where she sees future research heading. We look at what makes a good trial and the risk we need to think about when looking to participate in a trial.
So if you're interested in where the science is going definitely check this episode out.
Also, check out our new Facebook page for the Lichen Sclerosus Support Network to stay up to date on what's about to go down over there. Major changes are coming and I can't wait to share them with you. Follow and like https://www.facebook.com/lichensclerosussupportnetwork/
Don't forget to subscribe so you get notified when the next episode drops.
Hey. It's been a tough time lately and I can't be of service to you the way I want to so I will be taking some time off. I hope to be back reinvigorated.
If you would like to keep in touch you can follow me on Instagram @lichensclerosuspodcast, email me at lichensclerosuspodcast@gmail.com, or join the Lichen Sclerosus Support Network where I will be the most active at https://members.lssupport.net. I'm also going to dip my toe in Tik Tok so you can follow me at @lichen_sclerosus_podcast.
Stay safe.
This is the hardest episode I have ever recorded. It's raw and barely edited. It is needed. Please please please listen to this message. It is so important.
After you listen tell me does using your voice really work?
kathy@lichensclerosuspodcast.com
lichensclerosuspodcast.com/blm
Ever wonder what's going on with Lichen Sclerosus today? With all the different perspectives and voices what does the science say?
I speak with Leia Mitchell a clinical research coordinator, medical scribe, and clinical assistant working with some of the top names in the Lichen Sclerosus medical field.
She lays out the findings of a recent clinical review, Vulvar Lichen Sclerosus: Current Perspectives.
We discuss what the science says about what causes LS, how it presents, and the different ways to treat it. We dive deep into the different treatments.
From your first line corticosteroids all the way to the fourth and fifth line treatments such as Platelet-Rich-Plasma and CO2 Lasers.
Are you applying your topical treatments correctly? Leia details what your doctor should be telling you about corticosteroids and your maintenance schedule.
Be prepared to learn something new.
If you are in need of a positive nurturing environment to accept your diagnosis, learn to manage your illness, and get back to living your happy healthy life join us in the Lichen Sclerosus Support Network.
Go to lssupport.net to find out more.
If you would like to follow me on Instagram I'm @lichensclerosuspodcast
Resources discussed in this episode:
https://www.dovepress.com/vulvar-lichen-sclerosus-current-perspectives-peer-reviewed-fulltext-article-IJWH
https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.14747
http://www.vulvodynia.com/research
https://sa1s3.patientpop.com/assets/docs/161629.pdf
https://clinicaltrials.gov/ct2/show/NCT03665584
This week I talked to Dr. Sanaz Yaghmai about how physical trauma affects our Lichen Sclerosus. We also discussed the difference between a psychologist and a trauma-informed coach, her new practice Alchemy of Trauma, and how Lichen Sclerosus affects her work with other Lichen Sclerosus patients.
We had an amazing talk. She shared tips on how to relax and be mindful when preparing to be intimate if you experience pain during sex. If you feel you need someone to talk to check out her website at alchemyoftrauma.com or follow Dr. Sanaz on Instagram @dr.yaghmai.
Don’t forget to follow me @lichensclerosuspodcast on Instagram as well. Have an amazing week.
Please join me and this brave lady, Dr. Sanaz Yaghmai, as she shares her Lichen Sclerosus diagnosis story. She has battled LS for the last ten years, looking for answers. At the same time transitioning from psychologist to Trauma-Informed coach, yoga teacher, and birth doula.
Now she helps people through her new venture Alchemy Of Trauma, a Trauma-Informed practice centered around coaching for resilience-building and women’s reproductive health.
We shared laughs, tears, and insights on sex, relationships, and doctors.
Our conversation was so broad and deep that I had to break into two parts. Make sure you come back next week and learn how trauma informs our Lichen Sclerosus and our Lichen Sclerosus informs our trauma.
Make sure to follow Dr. Sanaz on Instagram @dr.yaghmai and if you would like to work with her check out her website https://www.alchemyoftrauma.com/.
I recorded this on World Voice Day. I decided to use my voice to tell you my mission and hope you join me. Please listen all the way through because this is a very important message. I hope you join the fight and help me change the future of Lichen Sclerosus.
You are not alone! The sooner we join together, the sooner we make a change.
Thank you.
Don't forget to follow Clare. https://www.instagram.com/vulvalcancerukawareness/
And to find out more about my upcoming project, sign up here: https://lichensclerosuspodcast.com/advocate
Sources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3298674/
https://time.com/4531239/breast-cancer-activism-history/
What would you do if your topical corticosteroid stopped working? I mean think about. Remember how it felt when you first noticed something was off with your vulva. The uncertainty that crossed your mind. Was this all in your head?
How it felt every time you went to the doctor and they gave you a new diagnosis but the medications they gave didn’t work. The frustration and fear that you would never truly know.
What about the day you were finally told you had Lichen Sclerosus? The feeling of devastation that you would never be rid of this but the feeling of relief that it had a name and you had a plan to manage it.
How freeing did it feel after you started using your medication? To not itch, to stop burning, feel kind of normal again? Now imagine your symptoms start coming back and your medicine is not working anymore.
The anxiety, the fear, the desperation that would wash over you because now you know. You know what Lichen Sclerosus is. You know what it can do to your body. What it can turn into if you don’t use your medication.
What would you be willing to do? Would you try a treatment that only had a 25% chance of working? What about 50% or 90%? Okay, what if it wasn’t FDA approved? Would it make a difference if your insurance didn’t cover it and you had to pay out of pocket? Would you pay thousands of dollars for this treatment? What if you didn’t know how long the results would last? Would that make a difference?
I don’t know. I might be desperate enough to try it. We’re going to look at what options we have if our corticosteroid treatments stop working. Forewarning, none of them are covered by insurance in the USA. I don’t know about other countries.
Alternate TreatmentsFractional Co2 Lasers
- Go by various names, MonaLisa Touch or CO2RE Intima, depending on the manufacturer
- Use lasers to remove layers of skin. When the skin regenerates it’s supposed to be supple, revitalized, and symptom-free
- Can range anywhere from $1,300 - $3,000 and up depending on the doctor, size of the facility and location of the practice
- Have past two recent clinical trials
- "Laser therapy is a promising option for patients not responding to topical corticosteroid therapy or patients wishing to reduce long-term corticosteroid maintenance use."
Platelet-rich plasma/PRP
- O-Shot
- Use injections of your platelets, which have been harvested from your blood injected into your vulva to improve the blood flow and “encourage tissue regeneration”, thus curing your symptoms
- can range between $500-$1500
- Double-blind clinical test recently published
- They concluded PRP was not a good treatment for vulvar Lichen Sclerosus and suggested there be more comparison studies.
Ultrasound therapy
- Sends ultrasound waves through different areas of the vulva. The thinking is to use sound energy to rejuvenate the skin and cure the patient of their symptoms.
- Could not find a price range
- Chinese clinical study published in 2017
- Although 90% had some improvement after one year only 25% maintained cured after five
Please see complete show notes for more details and links to studies.
Don't forget to subscribe!
Thanks!
Kathy
Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you.
For complete show notes and links to resources visit the website.
In 2014 the Journal of Women’s Health published a study done by the University of Michigan Health System titled “The Impact of Vulvar Lichen Sclerosus on Sexual Dysfunction”.
They studied 337 women divided into three groups one group had valvular Lichen Sclerosus, one chronic yeast infections, and the last was completely healthy. The women were of various ages, races, relationship statuses, and social-economic situations.
The study concluded,
Women with Lichen Sclerosus suffer from a greater degree of sexual dysfunction than both healthy women and those with Candida infections…Women with Lichen Sclerosus have less frequent sexual activity and less satisfying sexual activity when compared with controls.
How Does Lichen Sclerosus Affect sex?
There are four main ways Lichen Sclerosus affects our sex lives.
Pain
Lichen Sclerosus makes our vulva skin thin. This makes us susceptible to tearing. If you have ever touched an open sore you will understand the pain it causes. Now imagine sliding your finger over and over across that sore with varying degrees of pressure, that’s how sex can feel when you have LS.
The friction of rubbing skin can also cause burns. Rub your hands together. Feel your skin get hot. Now think about how that would feel if the skin on your palms was paper-thin. It would be manageable but not pleasant.
Let’s not forget the pain of having sex when you have fissures, blisters or tears already, sex just amplifies that pain. Sometimes we force ourselves to have sex because our partners want to and we do not want to deny them, either out of love, obligation, or because we desire them as well. This is not healthy for us mentally or physically. Continuing to have sex when we anticipate pain can lead to vaginismus (the contraction of the vagina muscles when approached by something trying to penetrate it), which will lead to more complications.
Women who have partial fusing of the labia may find that their capacity to be penetrated is greatly reduced and will feel pain if penetration is forced. Some may not know that their opening is smaller because they do not look at their vulva. They run the risk of tearing and causing greater damage as well.
Libido
Our desire to have sex or libido is closely tied to our self-esteem. If we do not feel worthy, desirable, or sexy our libido will lower drastically. Our lower self-esteem will have us questioning ourselves. Does my partner still desire me? Do they still find me sexy? What if I can’t perform the way I use to?
All these question race through our mind causing anxiety. Stressing us out and leading to fear. Fear of not being good enough. Fear of losing our relationship, on top of the fear sex will hurt again.
Mentally and Emotionally
All of this anxiety and self-doubt can manifest mentally and emotionally. We can start withdrawing because we don’t want to get hurt, emotionally and physically. Our minds can play tricks on us. Things our partners do could be misconstrued as signs they no longer desire us because we already question ourselves.
Physically
Our physical body plays a big part in our sex life. If we are having an outbreak or have fissures, blisters, or legions we are less likely to want to have sex (see pain). If you are suffering any type of atrophy (fusing) your hole may be too small for your partner to penetrate you. Forcing sex in any of these contains can cause vaginismus, creating another complication to a healthy sex life.
Covid-19 aka coronavirus has turned our world upside down. So I went searching to see what people in the online communities were saying about it. Some had questions and concerns about our risk as Lichen Sclerosus patients.
They asked questions like, does LS or our treatment make us susceptible to Covid-19? What makes you high risk? What’s the difference between autoimmune and immunosuppressive? So, I went researching, reached out to some doctors, and this is what I found.
What About Lichen Sclerosus Could Put Us At Risk?
In previous episodes, we learned researchers believe Lichen Sclerosus is an autoimmune disease with a genetic component. This means our immune system attacks healthy tissue. Imagine soldiers attacking their own civilians because they think they are the enemy. This is how an autoimmune disease behaves.
By this definition I can conclude, people with autoimmune diseases are not at higher risk for Covid-19 because their immune systems are working at a normal or higher level, it’s just attacking the wrong cells.
Who Is At High Risk For Covid-19?
- Elderly 65 and older but especially 80+
- Diabetics (no matter what type)
- People with heart conditions (high blood pressure, cholesterol, plaque around the heart or in the arteries, etc.)
- Those with asthma, COPD, and smokers (already have compromised lungs)
- People with compromised immune systems
- People with cancer
- People with HIV/AIDS
- People who have had a transplant
- People taking high doses of steroids or medications call biological, often for autoimmune conditions
Lichen Sclerosus is often treated with immunosuppressant drugs such as corticosteroids. This weakens the soldiers, hence they can’t hurt the civilians. Does this increase our risk?
What The Experts Say
There wasn’t enough material for a solid answer, so I reached out to Dr. Elizabeth Eden, a gynecologist specializing in Lichen Sclerosus in Manhattan New York. When asked she said, “Topical corticosteroids used for lichen sclerosus do not make one more susceptible to infection with Covid-19. People who are on immunosuppressive therapy or who are immuno-compromised are at risk of infection and complications associated with Covid-19 but just having lichen sclerosus and using topical steroid gels or creams do not place one in one of those categories.”
This was a relief. Our medication was not putting us at risk but I wondered if we should stop just in case, as we are learning new things about Covid-19 every day.
According to the British Association of Dermatology, “Not without consulting your doctor.” At this time they do not believe we are increasing our risk for Covid-19 and it’s complications by using these drugs. If you have other high-risk factors and are on immunosuppressant drugs they say speak with your medical professional and develop a plan together taking into account the risk from all sides. You could stay on the drug and have your immune system compromised or get off and let your autoimmune disease flare up and possibly progress. This has to be an educated decision considering all sides. Our best chance is to stay healthy and follow the best practices.
Conclusion
Lichen Sclerosus and it’s immunosuppressant treatments do not make us vulnerable for Covid-19 or its complications. Continue to take your medications unless you have discussed it with your doctor. Follow the recommended best practices to try and stay healthy. Stay calm and don’t stress.
If you think of someone who may find this information helpful please share this episode or podcast. We are all in this together! Stay safe, calm and have an amazing week.
Does stress cause Lichen Sclerosus flareups? The effects of stress on LS have not been researched. However, my personal experience is that they are connected. Other women in public forums have also associated their Lichen Sclerosus flareups with their level of stress. In today’s hectic and scary environment it is important that we manage our stress and minimize our flareups.
The changes implemented to contain the coronavirus are affecting a lot of us. Children are out of school. There is a shortage of toilet paper, soap, and medicine in the stores. Sporting events and large gatherings are canceled. The fear of the unknown is also causing us stress.
This stress has caused my Lichen Sclerosus to flareup with intensity. My vulva is itching more intently. I am also developing fissures and possibly a blister. This is by far the worst flareup I’ve had since after I received my diagnosis. These flareups can raise anxieties and isolation which can lead to depression. This is one of the main reasons we need to create a support group! I have also included 5 daily things and 5 quick things we can do to minimize stress.
5 Daily Things To Do To Minimize Stress
- Get Plenty of Sleep
- Eat a Proper Diet and Drink Plenty of Water
- Exercise
- Put Your Priorities in Place
- Laugh
**5 Quick Stress Relievers
Get a Hug**Hugs are great. They release oxytocin which gives you higher levels of happiness and lower level of stress. So, grab somebody you like and give them a squeeze.
Try aromatherapyBurn a candle, incense or diffuser and relax. Let the scent take you to a happy place and melt the stress away. Aromatherapy can help you feel energized, more relaxed and more present. So burn that stress away!
Do Some ArtworkResearch shows coloring can focus your mind, especially when coloring complex patterns. Draw, paint or color. Either way, relax and let your mind wander.
Express GratitudeTake stock of all the things you have to be thankful for. Studies show grateful people have better mental health, lower stress and better quality of life. Look on the bright side and brush that stress away.
PlayPlay with a pet, kids, significant other or friends. Enjoy that quality time and be in the moment. Let loose of the stress and just have fun!
If we do a few of these a day we will manage our stress and our Lichen Sclerosus flareups should minimize. At the very least we will be happier and enjoy the people around us more.
I hope you have an amazing week. Please reach out by email or leave me a voicemail. I can’t wait to speak to you!
Resources:
https://www.youtube.com/channel/UCJkxjzp8DFadQRiJp3yUdKg
https://www.verywellmind.com/tips-to-reduce-stress-3145195
https://www.ncbi.nlm.nih.gov/pubmed/18190880
Lichen Sclerosus affects everyone differently. Each person can have a different variety of symptoms or no symptoms at all. This week I tell you about the common, severe and secondary symptoms I learned about in my research. I also discuss how some of them have affected me.
Common Symptoms:
- Itching (mostly at night)
- Burning and soreness
- Fissures, nonhealing legions, and blood blisters
- Excessive sweating between your legs
- Chronic urinary tract or yeast infections
Severe Symptoms:
- The fusing of the labia
- The fusing of the clitoral hood
- Valvular scarring
Secondary Symptoms:
- Depression
- Isolation
- Fatigue
- Anxiety
- Loss of relationships
- Pain during sex, urinating or having a bowel movement
- Valvular cancer
While all of these symptoms are bad the mental health issues can cause the most harm because we may not even realize we are having them. This is why we need to build our community and start speaking to each other. I want to start building a network of support where we can text or talk to each other. I want to help and I need your help.
Lichen Sclerosus is often misdiagnosed many times before it is finally correctly diagnosed and treated. This can lead to frustration, disappointment, and worsening symptoms. Unfortunately, this is what happened to Clare Baumhauer. After forty years of suffering, she was told she had developed vulval cancer due to Lichen Sclerosus. My story had many of Clare's twists and turns but fortunately, was caught early.
Share your story and help grow our community so we can help each other survive this awful disease. I look forward to hearing from you.
Resources used in this episode:
https://www.vice.com/en_us/article/7xn87b/lichen-sclerosus-vulva-cancer-symptoms
https://acpinternist.org/archives/2011/06/vaginal.htm
https://www.rightdiagnosis.com/l/lichen_sclerosis/misdiag.htm
February is Vulval Health Awareness Month, Vulvuary! In celebration, I give you some stats and introduce you to the Association for Lichen Sclerosus and Vulval Health (ALSVH). We take a look at the Lichen Sclerosus Manifesto as I interject many times (I'm sorry. I can't help it!)
http://lichensclerosus.org/wp-content/uploads/2011/02/LICHEN-SCLEROSUS-MANIFESTO-PDF.pdf
Hi! My name is Kathy. I have been diagnosed with Lichen Sclerosus for two years but suffering much longer. I have minimal knowledge of the disease and I was okay with that. That was until about two weeks ago when I had the worst outbreak since I started my medication. I had no one to talk to or ask questions. I decided to find my community and learn as much as I could about this illness.
So this is a journal of my learning about and living with Lichen Sclerosus.
Please join the community and let's give each other hope and support!