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By Kathy Ruiz-Carter
4.9
5959 ratings
The podcast currently has 70 episodes available.
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:
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
Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.
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:
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.
Topics:
Key Points
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
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:
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:
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:If you'd like to share your voice in person (virtually), join our next virtual meetup.
We meet every other Saturday from 2–4 PM and 7–9 PM Eastern Standard Time. Take this opportunity to share your diagnosis story, what is and isn’t working for you, and ask a question to the group.
Share your experience and heal. I have met many incredibly strong LS warriors through these meetups, and I would love for you to join our community.
Sign up HERE for notifications and updates. I cannot wait to meet you!
Get ready for a heart-pounding year-end review of the Lichen Sclerosis Support Network's incredible work. From informative videos to virtual meetups, they're empowering LS warriors like me. But just when everything seems perfect, a shocking revelation threatens to unravel all their progress. Will they overcome this unexpected obstacle? Find out on the Lichen Sclerosus Podcast!
In this episode, you will be able to:
Discover the latest updates and initiatives from the Lichen Sclerosis Support Network (LSSN) in their year-end review.
Explore diet and lifestyle treatment resources that can help manage Lichen Sclerosis (LS) and improve your overall well-being.
Dive into the digital pages of LS Zine, a magazine dedicated to providing valuable insights and support for individuals living with LS.
Learn about the whole-body approach of the Wholistic Healing Summit and what next year's summit will focus on.
Learn about the other exciting projects and initiatives undertaken by the Lichen Sclerosis Support Network (LSSN) to support individuals dealing with LS.
The key moments in this episode are: 00:00:11 - Introduction 00:01:10 - Mission of LSSN 00:02:40 - Giving Tuesday 00:11:47 - What's New On The Website 00:14:42 Blog Posts 00:18:08 - Video Posts 00:22:00 - LSSN YouTube Channel
00:26:07 Virtual Meetups
00:30:56 LS Brochures
00:33:49 LSSN Shop 00:36:57 Long Form Content 00:41:04 LS Zine/LSSN's Digital Magazine 00:43:09 LSSN Board/Medical Advisory Board 00:46:18 Wholistic Healing Summit 00:47:50 LSSN Mini Summit: Vulvovaginal Conditions 00:50:02 Who have we partnered with? 00:57:40 - Reflecting on Accomplishments and Future Goals
Check out all the ways Lichen Sclerosus Support Network can help you at lssupportnetwork.org.
Visit our website at Lichen Sclerosus Support Network to access our resources and information. https://lssupportnetwork.org
Check out our blog for over 42 informative posts on Lichen Sclerosus. https://lssupportnetwork.org/blog
Check out our 32 video educational posts on everything LS related. https://lssupportnetwork.org/videos
Attend our virtual Meetups to connect with others and learn more about Lichen Sclerosus. https://lssupportnetwork.org/connect
Find a healthcare provider in our directory who specializes in Lichen Sclerosus. https://lssupportnetwork.org/providers
Browse our brochures for helpful information on managing Lichen Sclerosus. https://lssupportnetwork.org/brochure
Shop at our online store for Lichen Sclerosus-related products and merchandise. https://lssupportnetwork.org/shop
Support our education fund by making a donation on Giving Tuesday or becoming a monthly donor. https://lssupportnetwork.org/givingtuesday
Stay updated on news and events at LSSN by subscribing to our newsletters. https://lssupportnetwork.org/subscribe
Contact with Functional Nutrition Therapist Heather Cooan on her website at https://heathercooan.com
Check out our boards at https://lssupportnetwork.org/lssn-board
Get a copy of our digital magazine at https://lszine.lssupportnetwork.org
https://lssupportnetwork.org/
https://www.youtube.com/https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ
https://www.linkedin.com/in/lssn
https://www.facebook.com/lichensclerosussupportnetwork
https://instagram.com/lichensclerosussupportnetwork
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
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/
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.
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.
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:
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 Treatment with Dr. Jill Krapf
https://www.youtube.com/watch?v=NtFse-rcRwI
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/
Website: https://lssupportnetwork.org/
Loved this episode? Make a donation to help us create new content. https://lssupportnetwork.org/donate
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