Lichen Sclerosus Podcast

You are not doing the heavy lifting alone anymore.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.comWhat You Will Learn: Core Episode TakeawaysThe 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 The Diagnostic Blur (LS vs. LP): Why classic textbook definitions are outdated.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.In This Episode, We Discuss: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).Resources & Links:Connect with Penny PeterssonFollow Penny for pelvic yoga and pain management: @wellbeingbypenny on InstagramListen to more of the Pelvic Power Podcast on your favorite platform.Spotify: https://open.spotify.com/show/5L5EST5vW5qbgcEhLfvqLDYouTube: https://www.youtube.com/watch?v=YWZ9pZYm7r8Take the Next Step with LSSNWHS 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/whsJoin the CommunityLS 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/membershipGive yourself reliable guidance: Join the summit and stop guessing about your care. https://lssupportnetwork.org/whs

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.orgGet more information on the study at https://clinicaltrials.gov/study/NCT06662942?cond=stratamgt&rank=2or email the CVVD at [email protected] in this episode:Finally Get Clear Answers About LS, Menopause, and Your TreatmentIf you’ve ever found yourself listening to this podcast searching for answers… trying to figure out why your body feels different… why your treatment isn’t working… or whether this is menopause, lichen sclerosus, or something else entirely… You’re not alone. And more importantly— you’re not the problem. Most people with LS are left trying to piece together a care plan from short appointments, conflicting advice, and hours of searching like this. That’s exactly why we created the Wholistic Healing Summit. This free, live event (May 11–15, 2026) brings together 12+ leading specialists to help you finally connect the dots between your symptoms, your treatment, and your next steps. Inside the summit, you’ll get answers to questions like: Why does my treatment stop working? Is this LS progression… or hormonal change? What order should I actually be using my medications? How do I navigate intimacy, pain, and changing skin? And if you choose to upgrade, you’ll also get access to exclusive Q&A sessions, where you can hear real questions from people just like you… and get expert answers you’d normally wait months (and pay hundreds) for. This is where the guessing stops. 👉 Register here: https://lssupportnetwork.org/whs If you’re tired of second-guessing your care… this is your next step. P.S. If you’ve ever wished you had more time with a specialist or left an appointment with unanswered questions, the All-Access Pass gives you direct access to expert Q&As you can revisit anytime.

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/givingtuesdayAdditional Resources:Learn more about LSSN's programs and resources: https://lssupportnetwork.orgJoin LSSN's online community: https://lssupportnetwork.org/membershipAttend LSSN's Giving Tuesday live events: https://lssupportnetwork.org/givingtuesdayThank you for listening and for your support!Mentioned in this episode:Finally Get Clear Answers About LS, Menopause, and Your TreatmentIf you’ve ever found yourself listening to this podcast searching for answers… trying to figure out why your body feels different… why your treatment isn’t working… or whether this is menopause, lichen sclerosus, or something else entirely… You’re not alone. And more importantly— you’re not the problem. Most people with LS are left trying to piece together a care plan from short appointments, conflicting advice, and hours of searching like this. That’s exactly why we created the Wholistic Healing Summit. This free, live event (May 11–15, 2026) brings together 12+ leading specialists to help you finally connect the dots between your symptoms, your treatment, and your next steps. Inside the summit, you’ll get answers to questions like: Why does my treatment stop working? Is this LS progression… or hormonal change? What order should I actually be using my medications? How do I navigate intimacy, pain, and changing skin? And if you choose to upgrade, you’ll also get access to exclusive Q&A sessions, where you can hear real questions from people just like you… and get expert answers you’d normally wait months (and pay hundreds) for. This is where the guessing stops. 👉 Register here: https://lssupportnetwork.org/whs If you’re tired of second-guessing your care… this is your next step. P.S. If you’ve ever wished you had more time with a specialist or left an appointment with unanswered questions, the All-Access Pass gives you direct access to expert Q&As you can revisit anytime.

Join us for a special Giving Tuesday episode where we discuss the importance of supporting the Lichen Sclerosus Support Network (LSSN) and their mission to end the misdiagnosis and suffering caused by lichen sclerosus (LS).In this episode, you'll learn about:The challenges of living with LS and the impact of misdiagnosis.   The importance of patient education and support in managing LS.   The LSSN Provider Continuous Education Program (PCEP) and how it will improve healthcare provider knowledge and patient care.How your donations can help LSSN continue to provide vital resources and support to the LS community.Support LSSN this Giving Tuesday and help us break the cycle of suffering for people with LS. Your generosity can make a real difference in the lives of those affected by this often misunderstood condition.Resources and Links:Donate and Attend LSSN's Giving Tuesday Event: https://lssupportnetwork.org/givingtuesdayHelp LSSN raise money without disclosing your diagnosis: https://docs.google.com/document/d/16hoqesjqg_n68QGkGQPHAh0EYrZME1CH0NfVGNMVksQ/copy?usp=sharingLearn more about LSSN's programs and resources: https://lssupportnetworkJoin LSSN's online community: https://lssupportnetwork.org/membershipBecome an LSSN volunteer: https://lssupportnetwork.org/volunteerThank you for listening and for your support!Mentioned in this episode:Finally Get Clear Answers About LS, Menopause, and Your TreatmentIf you’ve ever found yourself listening to this podcast searching for answers… trying to figure out why your body feels different… why your treatment isn’t working… or whether this is menopause, lichen sclerosus, or something else entirely… You’re not alone. And more importantly— you’re not the problem. Most people with LS are left trying to piece together a care plan from short appointments, conflicting advice, and hours of searching like this. That’s exactly why we created the Wholistic Healing Summit. This free, live event (May 11–15, 2026) brings together 12+ leading specialists to help you finally connect the dots between your symptoms, your treatment, and your next steps. Inside the summit, you’ll get answers to questions like: Why does my treatment stop working? Is this LS progression… or hormonal change? What order should I actually be using my medications? How do I navigate intimacy, pain, and changing skin? And if you choose to upgrade, you’ll also get access to exclusive Q&A sessions, where you can hear real questions from people just like you… and get expert answers you’d normally wait months (and pay hundreds) for. This is where the guessing stops. 👉 Register here: https://lssupportnetwork.org/whs If you’re tired of second-guessing your care… this is your next step. P.S. If you’ve ever wished you had more time with a specialist or left an appointment with unanswered questions, the All-Access Pass gives you direct access to expert Q&As you can revisit anytime.