Lichen Sclerosus Podcast

If you are living with symptoms that seem confusing, inconsistent, or flat-out exhausting, we have a vital surprise for you.

For years, the Lichen Sclerosus Support Network (LSSN) has been a dedicated sanctuary for the LS community. But we know that many of our brothers and sisters are also navigating the painful, isolating world of Lichen Planus (LP) without a clear place to call home.

Today, that completely changes. LSSN is officially expanding our mission to build a dedicated resource home for Lichen Planus. Joining host Kathy to launch this new frontier is Dr. Erin Foster, a leading mucosal specialist from Oregon Health & Science University. Dr. Foster is stepping up as the head of our brand-new LP department to help turn scattered search spirals into hard clinical research, clearer tracking tools, and real community hope.

Visit our new LP website at https://aboutlichenplanus.com

• The Blueprint of Lichen Planus: How this autoimmune response targets the deep T-cells of your body, and why it can show up across your skin, mouth, scalp, nails, esophagus, or genitals.
• The Diagnostic Blur (LS vs. LP): Why classic textbook definitions are outdated. Dr. Foster shares why hyperkeratotic LP can present as completely white patches on the vulva, mimicking lichen sclerosus perfectly and causing years of misdiagnosis.
• The 3-to-9 Month Medication Trigger Window: A look at how common everyday medications like Ibuprofen, Metformin, and Beta-blockers can set off a delayed immune flare-up months after your first dose.
• The Truth About Scarring: Why identifying symptoms early in areas like the scalp (LPP) or moist mucosal tissues is vital to halt irreversible tissue fusion and hair loss.
• The Systemic Escalation Ladder: A breakdown of how treatments look when topical steroid creams aren't enough, including safe pills like Hydroxychloroquine and immune modulators like Methotrexate.

*Self-Advocacy & Educational Use Only. This podcast episode and its accompanying notes exist to organize personal observations, validate patient experiences, and support informed conversations with your care team. This content does not diagnose medical conditions, replace formal clinical examinations, or determine medication directives. LichenS Support Network does not provide clinical diagnoses or official treatment plans. Please coordinate directly with a qualified, licensed professional for all medical evaluations, physical tissue biopsies, and therapeutic care strategies.

If you’ve disclosed your LS to someone and they brushed it off, that isn’t on you—it’s on them. Because when you share this, you are giving them a gift.

In this crossover episode, Kathy joins Penny Petersson from the Pelvic Power Podcast for a conversation that goes far beyond medical facts. They dive into the "juicy" reality of living with LS: the sting of medical gaslighting, the fear of being vulnerable with a new partner, and the exhaustion of trying to coordinate your own care when doctors won't talk to each other.

Kathy and Penny discuss why community is the antidote to the "isolated" feeling of a new diagnosis and how to find the "diamonds in the sh*t" even during a flare.

• The "Special" Connection: Why opening up about your vulvar health is an act of courage and how to handle people who don't treat that vulnerability with the care it deserves.
• Medical Gaslighting: The reality of being dismissed by providers and the specific research being done right now to help patients fight back.
• Taming the Beast: Why your diagnosis today is not your destiny in six months, and how to "keep moving" so you don't get stuck in the cycle of inflammation and stress.
• Practice Makes Progress: Why Kathy is bringing role-playing and advocacy scripts to this year's summit (because being a "baddie" takes practice).

Connect with Penny Petersson

• Follow Penny for pelvic yoga and pain management: @wellbeingbypenny on Instagram
• Listen to more of the Pelvic Power Podcast on your favorite platform.
• Spotify: https://open.spotify.com/show/5L5EST5vW5qbgcEhLfvqLD
• YouTube: https://www.youtube.com/watch?v=YWZ9pZYm7r8

Take the Next Step with LSSN

• WHS 2026 (May 11–15): If this conversation hit home, join us for the Wholistic Healing Summit. We have specific sessions on Medical Gaslighting Scripts and Advocacy Breakout Rooms to help you practice the conversations we talked about today.
• Choose Your Pass: From the Free Pass to the All-Access Pass (which includes the lifetime "LS Wikipedia" library Kathy mentioned), find the level of support you need. 👉 Register for the Summit Here https://lssupportnetwork.org/whs

Join the Community

• LS Warriors: Our private, recurring donor community for those who want to skip the "late-night search spiral" and get straight to expert-backed answers. 👉 Become a Warrior https://lssupportnetwork.org/membership

Give yourself reliable guidance: Join the summit and stop guessing about your care. https://lssupportnetwork.org/whs

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 [email protected]. 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 [email protected]

Mentioned in this episode:

Don't miss the Art for Empowerment LSSN Auction

Looking for a gift with a story? Don't miss the Lichen Sclerosus Support Network’s 'Art for Empowerment' auction. We’re raising funds to provide vital education and support for people with vulvar lichen sclerosus. Every bid helps us give a gift that truly changes lives.

Episode Description:

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

What You’ll Learn in This Episode:

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

Special Guest:

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

Key Moments:

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

Connect with Us:

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

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

or email the CVVD at [email protected]

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Key Takeaways:

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

Call to Action:

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

Chapter Markers:

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

Connect with LSSN:

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

Mentioned in this episode:

Don't miss the Art for Empowerment LSSN Auction

Looking for a gift with a story? Don't miss the Lichen Sclerosus Support Network’s 'Art for Empowerment' auction. We’re raising funds to provide vital education and support for people with vulvar lichen sclerosus. Every bid helps us give a gift that truly changes lives.

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!

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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!

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…