Lichen Sclerosus Podcast

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.

Communication, Vulnerability, and Sex Positivity Transform an LS Relationship

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 MichealAnnie and Michael bring a unique perspective to the conversation as a couple navigating the challenges of living with Lichen Sclerosus. Annie's personal journey with LS, from dealing with misdiagnosis to undergoing a biopsy, provides a firsthand understanding of the physical and emotional toll this condition can take. Michael, as a supportive partner, shares his experiences of navigating the impact of LS on their intimate relationship and the communication challenges they faced during this time. Their honest and open dialogue sheds light on the complexities of managing LS within a long-term relationship, making their insights valuable for others in similar situations.The key moments in this episode are:00:00:00 - Introducing Annie and Michael 00:02:22 - Annie's LS Journey 00:08:25 - Biopsy Process and Support 00:13:02 - Communication and Relationship 00:15:55 - Medical Diagnosis and Initial Concerns 00:17:43 - Age and Diagnosis 00:19:06 - Diagnosis Confirmation and Frustrations 00:23:26 - Partner's Involvement and Education 00:26:35 - Medication Side Effects and Treatment Adjustments 00:30:20 - Advocating for Yourself 00:32:30 - Importance of Education for Doctors 00:36:06 - Impact on Relationships 00:39:37 - Transformation through Communication 00:43:47 - Coping with Stress and Loss 00:45:05 - The Importance of Communication in Relationships 00:47:17 - Broadening Perspectives on Intimacy and Sex 00:51:27 - Seeking Support for Partners and Caregivers 00:55:43 - Journey to Healing with Dr. Bob 00:58:52 - Excitement for the upcoming summit 00:59:27 - Doctor Bab's thorough care 01:00:53 - Virtual visits with Doctor Bab 01:01:37 - Open communication about sex 01:02:38 - Summit topics and invitation Register for the Holistic Healing Summit from May 13th to 17th at lssupportnetwork.org to gain valuable insights and information on intimacy, communication, sexual intimacy, and emotional intimacy in the context of Lichen Sclerosus.Explore the book Sex Talks: The Five Conversations That Will Transform Your Love Life by Vanessa Marin for valuable guidance on enhancing intimacy and communication in your relationship. https://www.amazon.com/Sex-Talks-Five-Conversations-Transform/dp/1668000016Connect with Dr. Babb, a vulvar specialist, for thorough examinations and expert guidance on managing Lichen Sclerosus. Virtual visits are also available for those who are not local. https://havencenter.comExplore the SweetSpot Labs body wash and other products recommended by Annie for gentle care of the skin, especially for those with Lichen...

04-29
01:02:47

Live Lichen Sclerosus and Sexual Wellness Panel Replay

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/whsJoin 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/whsIn 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.

04-22
01:15:49

Rebuilding Relationships and Reconnecting with Lichen Sclerosus

Topics:What is the LSSN Wholistic Healing Summit?Importance of addressing relationships affected by Lichen Sclerosus (LS)Summit focus: Partners, Caregivers, and DisclosureSessions for patients, partners, and caregiversWellbeing activities for stress managementOpportunities to connect with other attendeesKey PointsLSSN 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 Stamps00:00:00 - 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

04-17
21:57

Unraveling The Hormone And Microbiome Puzzle In Lichen Sclerosus

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...

03-01
36:53

Why You Need to be at the LSSN Mini Summit

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  

09-15
30:20

Find Your Power Through Pelvic Health with Wellness.By.Penny

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/

06-23
24:30

The Challenges of Research with Sophie Rees

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.

06-16
01:04:30

Listen to This If You're Looking For Evidence-based Information and Community

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.

04-30
12:39

How steroids affect lichen sclerosus patients with Dr. Jill Krapf

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...

04-24
46:10

Do you want to Get Your Sexy Back? You need this program.

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

03-31
29:24

Demystifying steroid treatment for lichen sclerosus

Join me as I talk to Dr. Jill Krapf, LS specialist; researcher; author; and educator, about all things steroids. What does it do to the skin? Why do we need it? And she answers some frequently heard steroid concerns. If you’re on the fence about or want to learn more about steroids, this is the episode for you. In this video, you will learn: 1. What is the current understanding of the cause of Lichen Sclerosus, and what role do external stressors, diet, hormones, and trauma play? 2. How can topical steroids be effectively used to manage Lichen Sclerosus? 3. What are the best strategies for individualized care for Lichen Sclerosus? Resources: Vulvar Lichen Sclerosus: Current Perspectives https://www.vulvodynia.com/assets/files/ijwh-191200-vulvar-lichen-sclerosus-current-perspectives.pdf Topical Corticosteroids in the Treatment of Vulvar Lichen Sclerosus: A Review of Pharmacokinetics and Recommended Dosing Frequencies https://vulvodynia.com/assets/files/Lichen-Sclerosus.pdf Center for Vulvovaginal Disorder http://cvvd.org LSSN Blogs: How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly https://lssupportnetwork.org/applyproper Lichen Sclerosus Treatment Series Part 1: Steroids https://lssupportnetwork.org/steroids1 LSSN Video: How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly https://lssupportnetwork.org/drjill Connect with us: Instagram: https://www.instagram.com/lichensclerosussupportnetwork/ Facebook: https://www.facebook.com/lichensclerosussupportnetwork/ YouTube: https://www.youtube.com/channel/@lichensclerosussupportnetwork Website: https://lssupportnetwork.org/ Loved this episode? Make a donation to help us create new content. https://lssupportnetwork.org/donate

03-17
52:19

Pain Relief Without Pills: Ashlie Crewe's Guide to Treating Persistent Pelvic Pain

Ashlie Crewe, a Physical Therapist with a Psychology degree, embarks on a journey to help patients manage their chronic pain using neuroscience, only to find her own trial by fire as she discovers a unique way to challenge a patient's overprotective nervous system. "The beautiful thing, good and bad, is that physical therapists, we're not allowed to prescribe medicine in the United States. So I think one of the cool things about my job then is we're really taught to work with the human body, and we're not allowed to order imaging, we're not allowed to prescribe medications.” Ashlie Crewe is a Pelvic Health physical therapist and teacher/mentor to Pelvic Health physical therapists across the United States. She has a passion for neuroscience, psychology, and Pelvic Health, making her an expert in persistent pelvic pain. Ashlie Crewe found her true calling when she attended her first pelvic health class after physical therapy school. The class blew her mind and she knew the neuroscience of pain was the way to help patients with persistent pelvic pain. She quickly developed her skills and started to understand how to apply the neuroscience of pain to her practice. She creates a space with her patients to make them feel safe and trusts them to choose their own treatment path. She assesses their tissues, looking for any signs of adherence, and then checks their nervous system to see how it responds. Through this practice, she helps to rewrite the painful stories her patients have been told and shows them that physical therapy can provide them with lasting relief. In this episode, you will learn the following: 1. How does physical therapy help treat chronic pain and persistent pain conditions? 2. How does the relationship with a therapist impact a patient's improvement? 3. How can physical therapists use neuroscience to assess and treat pelvic pain? Resources: International Pelvic Pain Society - https://www.pelvicpain.org/ Drayer Physical Therapy for northeast USA - https://drayer.urpt.com/ Upstream Rehabilitation for across USA - https://urpt.com/ Other episodes you'll enjoy: Lichen Sclerosus and Overactive Pelvic Floor - https://youtu.be/mxQjC3jEoYg Dr. Rachel Rubin: Unlocking Clitoral Fusing Through Non-surgical Lysis - https://youtu.be/F5KO5LGXRx0 Vulva Checks for Lichen Sclerosus: Everything You Need To Know - https://youtu.be/E9fnXDh5up4 Connect with me: Instagram: https://www.instagram.com/lichensclerosuspodcast/ YouTube: https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ Website: https://lssupportnetwork.org/ If this episode was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. Loved this episode? Leave us a review and rating here: https://lovethepodcast.com/lspodcast

03-02
53:31

Dr. Rachel Rubin: Unlocking Clitoral Fusing Through Non-surgical Lysis

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

02-15
48:11

Struggling with Stress and LS? You need to hear this!

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.

06-14
27:32

Is Somatic Sex Education for YOU?

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!      

05-03
26:38

Unravelling 9 Years of Managing LS Naturally Through AIP

Angie Alt, a social activist and researcher, takes on the challenge of managing her Lichen Sclerosus for 9 years through the Autoimmune Protocol, an ambitious goal that leads to a journey of self-discovery and healing. Here's what Angie Alt and I cover: 1. How Angie Alt transformed the Paleo Diet into the Autoimmune Protocol to manage her Lichen Sclerosis for 9 years. 2. What is the Autoimmune Protocol and how can it help those living with autoimmune diseases? 3. How to navigate the Autoimmune Protocol in a sustainable way with the help of Angie Alt’s program. Angie Alt is an autoimmune protocol coach and social activist who has lived all over the world and managed her LS for 9 years using the autoimmune protocol. 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 lssupportnetwork.org/volunteers. If you're in need of support, join us in the next LS Support Virtual Meetup. Signup at lssupportnetwork.org/connect for more details. See the video at lssupportnetwork.org/aip Connect with me: Instagram: https://www.instagram.com/lichensclerosussupportnetwork/ Facebook: https://www.facebook.com/lichensclerosussupportnetwork/ Website: https://lssupportnetwork.org/ Loved this episode? Please leave a review and make sure you're subscribed.    

02-05
54:10

How to apply your LS steroid treatment correctly with Dr. Jill Krapf

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.

01-21
43:11

Why are health goals important?

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.  

01-07
24:19

Top 5 Episodes of 2021

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.

12-18
31:41

Pediatric Lichen Sclerosus with Dr. Sandy Flann

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.

12-10
54:29

Blair Bouchard

I am so thankful that I stubbled across this. Thank you Kathy for opening up about LS. I've finally got diagnosed after my gyne took punch biopsies after complaining for 5 yrs cause of being dismissed being it all in my head! I'm just starting to investigate LS also! Love this!! Here for you also, Kathy!!

05-17 Reply

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