Lichen Sclerosus Podcast

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:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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.

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.

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

• 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 profile: Follow Dr. Mauskar on Instagram to stay updated on her work, research, and insights in the field of dermatology and women's health. https://www.instagram.com/melissamauskarmd/
• Contact Dr. Mauskar at UT Southwestern Medical Center: If you are in the UT Southwestern area and in need of a dermatologist, reach out to Dr. Mauskar for expert care and consultation. https://utswmed.org/doctors/melissa-mauskar/

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!

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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/

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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.

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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.

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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 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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…

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

Mentioned in this episode:

Finally Get Clear Answers About LS, Menopause, and Your Treatment

If you’ve ever found yourself listening to this podcast searching for answers…