Lichen Sclerosus Podcast

By: Kathy Ruiz-Carter
  • Summary

  • 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.
    ℗ & © 2024 Lichen Sclerosus Podcast
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Episodes
  • Communication, Vulnerability, and Sex Positivity Transform an LS Relationship
    Apr 29 2024

    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...
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    1 hr and 4 mins
  • Live Lichen Sclerosus and Sexual Wellness Panel Replay
    Apr 22 2024

    Bonus Alert until April 28: Check out the bonus 14 video replays from past summits that come with the Wholistic Healing Summit All-Access pass. https://lssupportnetwork.org/whs

    Join us for this informative panel discussion on lichen sclerosis and sexual health. Hosted by Kathy Ruiz-Carter, we have a talented group of experts: patient advocate Jaclyn Lanthier, gynecologist Dr. Suzanne Weber, and pelvic health physical therapist Dr. Mamawah Bourque.

    We cover key topics like LS treatment and management, tips for engaging in sexual activity, managing symptoms during menstruation, considerations around pregnancy, and more. The panel shares practical guidance grounded in both clinical expertise and lived experience. You'll discover helpful insights on using steroids, alternate therapies, dilator work, lubricants, vulvar care, pelvic floor health, open communication with partners, and listening to your body's needs.

    We also talk about emerging research on LS progression and hormonal connections. Whether newly diagnosed or a long-time LSer, you'll find empowering takeaways to improve your sexual health and approach LS management more holistically. We hope you feel encouraged in your journey toward remission and pain-free intimacy.

    Let us know in the comments what resonated most or what additional questions you have! And don't forget to check out the bonus 14 video replays from past summits that come with the Wholistic Healing Summit All-Access pass. https://lssupportnetwork.org/whs

    In this episode, you will be able to:

    • Understand how to manage lichen sclerosus during pregnancy for a smoother journey.
    • Discover practical tips for maintaining sexual health while dealing with vulvar lichen sclerosus.
    • Learn effective strategies for comfortable bike riding despite lichen sclerosus symptoms.
    • Explore the benefits of pelvic floor therapy in managing lichen sclerosus symptoms.
    • Uncover the hormonal effects on lichen sclerosus symptoms and how to mitigate them.

    My special guest is Jaclyn Lanthier, Suzanne Weber, and Mamawah Bourque.

    The key moments in this episode are:

    00:00:00 - Introducing the National Vova Awareness Day event.

    00:03:24 - LS progression and management.

    00:07:33 - Natural and maintenance options for LS treatment.

    00:12:07 - Treating different areas of the genitals.

    00:15:26 - Personalized application of treatment.

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    1 hr and 16 mins
  • Rebuilding Relationships and Reconnecting with Lichen Sclerosus
    Apr 17 2024

    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!

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    23 mins

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