Lichen Sclerosus Podcast
Lichen Sclerosus Podcast

Lichen Sclerosus Podcast

Kathy Ruiz-Carter

Overview
Episodes

Details

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.

Recent Episodes

The Future of LS Care: A Conversation with Dr. Jill Krapf
DEC 9, 2024
The Future of LS Care: A Conversation with Dr. Jill Krapf

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!

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54 MIN
Communication, Vulnerability, and Sex Positivity Transform an LS Relationship
APR 29, 2024
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 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.

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62 MIN
Live Lichen Sclerosus and Sexual Wellness Panel Replay
APR 22, 2024
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/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.

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75 MIN