Join Us & Empower Your LS Journey with In-Person Meetups in Florida.

Join Us & Empower Your LS Journey with In-Person Meetups in Florida.

Tired of feeling isolated and overwhelmed by lichen sclerosus? You're not alone. Join us for an intimate in-person meetups in Florida where you can: Connect with other locals who truly understand your journey Share your experiences in a safe and supportive space Learn from fellow patients and LSSN experts Find the support and resources you need to thrive Virtual support is great, but nothing replaces the power of in-person connection. At our meetups, you'll experience: The warmth of community: Share stories, offer encouragement, and celebrate successes together. Expert guidance: Learn the latest information and practical tips from LSSN Executive Director, Kathy Ruiz-Carter. Reliable information: Get your questions answered and clear up any confusion about LS. Empowerment: Leave feeling more confident and in control of your health. Meet A Leading Voice in the LS Space: Kathy Ruiz-Carter Our in-person Florida meetups are led by Kathy Ruiz-Carter, a Lichen Sclerosus educator with…
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Unraveling the Hormone and Microbiome Puzzle in Lichen Sclerosus

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…
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LSSN Mini Summit on Vulvovaginal Conditions

LSSN Mini Summit on Vulvovaginal Conditions

https://www.youtube.com/watch?v=lLPT8xf6F7U As we all know, education is foundational to health. If we don’t know about our bodies and vulvovaginal conditions, it’s difficult to take care of them. LSSN exists to empower people with LS through evidence-based information and support. And this year, we’re bringing you even more opportunities to access information and experts in the field.  For the first time, LSSN is hosting a mini-summit! The LSSN Mini Summit: Vulvovaginal Conditions is a 3-day virtual event that will provide you with the information and support you need to take control of your vulvar health. It will take place Friday, September 29, through Sunday, October 1, 2023. You'll learn from leading experts about vulvovaginal conditions rarely discussed, including Lichen Sclerosus. Other conditions include: Hidradenitis Suppurativa Persistent Pelvic Nerve Pain Persistent Genital Arousal Disorder Genitourinary Syndrome of Menopause Lichen Simplex Chronicus Overactive Pelvic Floor Muscles. You'll also be able to connect with…
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A Look at Acceptance and Resilience. What Does It Mean?

A Look at Acceptance and Resilience. What Does It Mean?

Listen to the podcast here: Introduction And Excited Announcements Hey, and welcome! I’m so glad you are here to join a round table discussion about the concepts of acceptance and resilience we had live with some members of the LSSN membership. The concepts of acceptance and resilience are critical to living with a condition such as Lichen Sclerosus. In this discussion, I asked our participants a series of questions relating to these concepts and Lichen Sclerosus. If you want to join future discussions? Click the button below. Sign Up What is your definition of acceptance and resilience? What do those words mean to you, specifically concerning your Lichen Sclerosus? Jen: I think of the concept of acceptance as being able to admit that you have a condition/disease without simultaneously giving up/throwing in the towel. Acceptance for me means my Lichen Sclerosus is a part of me, but it is not…
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Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

The muscles at the base of your pelvic floor are like any other muscle in your body. They can weaken, hold tension and affect how your body works. Pelvic floor physical therapy can help those with Lichen Sclerosus keep their pelvic floor muscles healthy. That’s where experts like Ashley Stump, PFPT, come in. As a pelvic floor physical therapist, she helps people with various problems, including painful sex, urinary and bowel issues, pelvic pain, and pain from LS. I spoke with Ashley to learn more about what she does as pelvic floor PT and how it benefits those with LS. How does Lichen Sclerosus affect your pelvic floor muscles? If you have LS, you already know the condition affects various parts of your life. It also involves multiple parts of your body, including your pelvic floor.  Just like people can hold tension in their neck muscles, they can also have…
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Elevate the Voices of People with LS Through Global Research

To participate in this important research, Global Research on the Impact of Dermatological Diseases, please follow this link: https://globalskin.org/GRIDDStudy Stakeholder toolkit: https://globalskin.org/component/cont... A huge thank you and shoutout to the incredible work done by GlobalSkin for their initiatives to help create a better world for folks with dermatological conditions. Learn all about the Global Research on the Impact of Dermatological Diseases below https://youtu.be/hY3McSD6Zfg In today's video, I am sharing a very important survey for lichen sclerosus and dermatology conditions. It is free, takes about 20 minutes to fill out, and is available in 17 different languages. As a lichen sclerosus patient, you are invited to participate in ground-breaking research that is being conducted by the International Alliance for Dermatology Patient Organizations (also known as GlobalSkin) in collaboration with researchers at Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany). What is the GRIDD study? The Global Research on the Impact of Dermatological Diseases (GRIDD) project aims…
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What’s the best lube for Lichen Sclerosus?

What’s the best lube for Lichen Sclerosus?

https://youtu.be/P9edyDq6Ue0 Have you ever wondered what lube is best for Lichen Sclerosus? Perhaps you felt overwhelmed by the massive selection of lube options online and had no clue what to buy? Have you ever wondered what you should look for and avoid in a lube? If yes, this is the episode for you! Today I am here with my amazing friend and fellow LS warrior, Jaclyn, from The Lost Labia Chronicles, and we are going to be talking about lubrication, artificial lubrication, that is. But before we jump into this, click here to subscribe to The Lost Labia Chronicles, which dives into sex, mental health, and Lichen Sclerosus. I am so happy to be here with my girl to talk with y’all about lube (what kind of lube is right for you, Jaclyn’s experience with dilators and lube, what you want to consider in choosing a lube, etc.). Types of…
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Discussing The Mona Lisa Double-Blind Study with Leia Mitchell

Discussing The Mona Lisa Double-Blind Study with Leia Mitchell

In this episode, we look at the clinical trial done around Fractionated Carbon Dioxide Laser, also known as the Mona Lisa laser, with Leia Michell. We discuss why they felt the research was needed, who was in the trial, how they performed the trial, and the results. If you've got laser treatment, please let us know how it was for you in the comments below. Meet Leia Mitchell, a passionate and knowledgeable physician assistant whose expertise lies in the realm of Lichen Sclerosus treatment. Her commitment to the comprehensive understanding and management of this condition has led her to investigate the Mona Lisa laser's potential for helping those with Lichen Sclerosus. As a board-certified physician assistant, Leia's extensive experience and background allow her to provide expert guidance and advice to medical practitioners seeking the latest innovations in Lichen Sclerosus's care. Leia's dedication to her field has resulted in the groundbreaking…
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Take Part In The Revolutionary GRIDD Study Today

Take Part In The Revolutionary GRIDD Study Today

As a lichen sclerosus patient, you are invited to participate in ground-breaking research that is being conducted by the International Alliance for Dermatology Patient Organizations (also known as GlobalSkin) in collaboration with researchers at Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany). The Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to collect global data on the impact of dermatological conditions on patients’ lives. To collect this impact data, we have developed the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a scientifically sound questionnaire capable of measuring the impact of conditions of the skin, hair, nails, and mucosa from the patient’s perspective. As a Member of GlobalSkin, Lichen Scleorsus Support Network is supportive of this important project. You are the expert, and your opinion matters! By participating, you will be helping to show clinicians, researchers, and policymakers the true impact of living with your dermatological…
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Unfiltered and Bold: Real Talk on Pelvic Health with Penny Petersson

Unfiltered and Bold: Real Talk on Pelvic Health with Penny Petersson

Does the constant discomfort in your pelvic area sound familiar? Have you tried medication or invasive procedures with little to no relief? It's time to take control of your pelvic wellness with holistic approaches that celebrate the power of your body. Join us to discover how embracing your pelvic area can alleviate pain and create a supportive community for those dealing with similar issues. Don't let chronic conditions hold you back any longer - it's time to unlock your potential for a fulfilling life. Empower yourself and join us for a journey towards pelvic health and wellness. The body is so fucking amazing. Penny Petersson Pelvic Yoga Coach My special guest is Penny Petersson You can catch a glimpse of Penny's infectious spirit on her Instagram page, @wellbeingbypenny, where she makes us smile by calling out the struggles of living with LS and pelvic health issues. This is Penny Petersson's…
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LS Zine Giving Voice to Patients Around the World

LS Zine Giving Voice to Patients Around the World

By Gina At this year’s (W)holistic Healing Summit, the Lichen Sclerosus Support Network released its first LS Zine! The zine gives voice to LS patients through art, poetry, interviews, and storytelling. It’s a creative, intimate look at Lichen Sclerosus through the eyes of people who live with it every day. I am honored to be one of the individuals featured in the LS Zine. Contributing two poems and being interviewed by a member of the project team reminded me of the importance of art and storytelling as a part of healing. The Importance of Sharing Our LS Stories Since being diagnosed in 2020 with Lichen Sclerosus, I’ve struggled with being able to put my experience into words.  Because LS isn’t widely known, I’ve spent a lot of time researching it and explaining it. I’ve read medical articles, listened to webinars, and tracked symptoms. I’ve shared the information I’ve learned with…
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Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

Discussing The Challenges of Lichen Sclerosus Research with Sophie Rees

The surprising roadblocks of Lichen Sclerosus research - and how they were overcome! 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. My special guest is Sophie Rees. Sophie Rees is a medical sociologist specializing in qualitative and mixed methods research to explore patient experience. She works at the University of Bristol Trials Centre, conducting qualitative research within randomized controlled trials. Sophie is the Chief Investigator of the ESRC-funded project Living with Vulval LS: A Mixed Methods Study, using…
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Giving Yourself Grace

Giving Yourself Grace

Listen to the podcast here: Introduction Hey! Welcome! We recently held our annual (W)holistic Healing Summit. If you're not familiar with it, check out this post. If you are, then you know it's a major event full of education and community. I have a small team of volunteers that help me pull it off, but I do the bulk of the work. My planned recuperation break was rudely interrupted by my second autoimmune condition, Sjogren's. I spent days barely able to walk around my bed to get to the bathroom. Joint's sore. Dehydrated with cracked lips and tension headaches. It was not the break I needed. So, I thought it was the perfect time to bring this episode of the Lichen Sclerosus Podcast back. I originally recorded this before my Sjodren's diagnosis. At the time, I had no idea what had zapped my energy out of the blue. I'm thankful…
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Is Lichen Sclerosus Lowering Your Sex Drive?

Is Lichen Sclerosus Lowering Your Sex Drive?

*Just a quick warning, I will be talking about how Lichen Sclerosus affects our sex and sex drive. If you are sensitive to that, I completely understand, but this may not be the blog/podcast for you. **Another caveat. This episode is geared towards women with moderate to mild Lichen Sclerosus and not for those with severe Lichen Sclerosis (i.e., those with fusing across the vestibule/vaginal opening) or those with vaginismus or vulvodynia. I’m excited to bring some fresh insights to the podcast after our Lichen Sclerosus virtual meet-up. As many of you living with Lichen Sclerosus already know, Lichen Sclerosus can negatively impact our sex drive; sometimes, it stops it altogether. This week we dive into the topic of Lichen Sclerosus, how it can lower our sex drive, and, most importantly, how we can become empowered to get it back! During our Lichen Sclerosus Virtual Meetup, I discovered a trend…
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Grooming with Vulvar Lichen Sclerosus (with video)

Grooming with Vulvar Lichen Sclerosus (with video)

https://www.youtube.com/watch?v=Vlmkb9CO_bA Dr. Cynthia Wesley (aka Dr. Cyn) is a board-certified OBGYN with over 16 years of experience and a vulvar skin expert. Dr. Cyn is passionate about vulvar care, hygiene, and grooming. She will share her tips for grooming with vulvar Lichen Sclerosus. I learned so much in this episode, and I hope you do as well. Be sure to scroll to the resources section for all of Dr. Cyn’s information, including her social media, which you will definitely want to subscribe to. Dr. Cyn does Facebook and Instagram lives every Thursday, and they are informative and fun! Using the Bathroom with Lichen Sclerosus - Tips From an Expert Before jumping into vulvar grooming with Lichen Sclerosus, Dr. Cyn starts with the basics - going to the bathroom, of course! Recommendation #1: Because the skin of the vulva is more sensitive and prone to tearing and fissures, Dr. Cyn recommends…
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Unlocking Lichen Sclerosus Secrets: (W)holistic Healing Summit

Unlocking Lichen Sclerosus Secrets: (W)holistic Healing Summit

When Kathy started her podcast, she 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, Kathy and her community strive to make a brighter tomorrow for those facing the same struggle she once did. But what does the future hold for this amazing network? 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…
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Does long-term use of topical steroids thin vulvar skin?

Does long-term use of topical steroids thin vulvar skin?

High-potency topical corticosteroids are the gold standard for treating Lichen Sclerosus (LS). But many people with LS worry about the effects of using this medication for an extended time. Will it eventually thin and damage the vulvar skin? To address this question, I talked with Dr. Jill Krapf. She’s a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Washington, DC. In 2021, Dr. Krapf co-wrote a review with Dr. Andrew Goldstein and Theodora Mautz that explored recommended dosing frequencies for topical steroids and how the medication affects the body.  “Even though there are studies that show that topical steroids work, there’s not a consensus on how to apply them, the best way to apply them, how long to apply them – all of the nitty gritty things,” explained Dr. Krapf.  Understanding more about topical steroids and how they are absorbed and delivered throughout the…
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Discussing how steroids affect lichen sclerosus patients with Dr. Jill Krapf

Discussing 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 sclerosis, 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 Sclerosis. 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…
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Lichen Sclerosus (W)holistic Healing Summit 2023

Lichen Sclerosus (W)holistic Healing Summit 2023

Getting quality lichen sclerosus information from providers is hard sometimes. Hell, finding it on the internet is even more challenging. That’s why every year, LSSN has hosted the lichen sclerosus (W)holistic healing Summit. The largest patient-centered, evidence-based, whole-body virtual conference of the year. From May 8 - 13, 2023, more than 1,000 individuals worldwide will gather virtually to participate in the more than 60 live sessions at HHS. Many have never talked to another person with LS. All of them are looking for solid information to make living with LS easier. Break the Isolation The summit offers multiple ways to connect, such as 30-minute networking spaces after every session, so you can discuss what you learned and share experiences. Open lodges between sessions to meet people from all over the world. Private and public chats, so you can have quality conversations and make connections. Every attendee gets a digital business…
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How I Successfully Overcame the Fear of Performing My Vulva Check

How I Successfully Overcame the Fear of Performing My Vulva Check

Whether or not you have Lichen Sclerosus, checking your vulva on a regular basis is an important part of your health. Anyone with a vulva should do a self-exam once a month, just like everyone with breasts should do a monthly breast self-exam. Because vulva checks aren’t talked about much, it may seem weird to do one. And, if you have Lichen Sclerosus, you may be nervous about the kind of changes you may see. Know that with the right education and practice, it can become a routine part of your health that you’ll get more comfortable with. In this blog, I’ll share with you my first experience doing a vulva check and how you can do one on your own. Plus, I’ll connect you to some helpful LSSN resources to make your experience easier. Preparing for My First Vulva Check When I was first diagnosed with Lichen Sclerosus, I…
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Unraveling the Mystery of Lichen Sclerosus Treatment with Dr. Jill Krapf

Unraveling the Mystery of Lichen Sclerosus Treatment with Dr. Jill Krapf

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? https://www.youtube.com/watch?v=NtFse-rcRwI 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…
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How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

If you’ve been diagnosed with Lichen Sclerosus, there’s a good chance you’ve been given a prescription for a steroids. That’s because high-potency topical corticosteroids are the gold standard treatment for Lichen Sclerosus. Unfortunately, the prescription doesn’t usually come with an explanation of what it does or how to use it. This leads to a lot of confusion, questions, and misconceptions about the safety and effectiveness of steroids for LS.  That’s where my guest, Dr. Jill Krapf, comes in! Dr. Krapf is a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Tampa, FL. She’s an invaluable resource for those living with LS and helps them understand the condition and treatment. In this blog, we talk about how topical steroids help treat Lichen Sclerosus and how to use them properly. Why are topical steroids used as a treatment for Lichen Sclerosus? Before we talk about how…
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Pain Relief Without Pills: Ashlie Crewe’s Guide to Treating Persistent Pelvic Pain

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

Do you suffer from persistent pelvic pain and have been told that it is “all in your head”? If so, you are not alone. 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.” Who is Ashlie Crewe? 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…
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She Reversed Severe Clitoral Adhesions Without Surgery

She Reversed Severe Clitoral Adhesions Without Surgery

In this blog, I’ll share information about clitoral fusing and introduce you to a fantastic woman. This warrior was able to reverse her severe clitoral adhesions without a medical procedure. And she did it within a few months.  One of the most common questions I get when people are first diagnosed with Lichen Sclerosus is: What will this do to my body? The next question is: Can I do anything about it? Unfortunately, having Lichen Sclerosus (LS) puts you at risk for vulvar changes, including fusing/scarring.  But here’s the good news: Surgery isn’t the only option for treatment. Of course, everyone’s LS journey is different, and what works for one person may not work for another. But knowing all of your options can help you decide what’s best for you and give you conservative measures to try before opting for surgery.  Let’s learn a little more about clitoral fusing/scarring. What…
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The Way To Undo Severe Clitoral Fusing In One Visit Without Going Under The Knife

The Way To Undo Severe Clitoral Fusing In One Visit Without Going Under The Knife

In this episode, Dr. Rachel Rubin sheds light on the startling truth that 23% of all women suffer from Clitoral Phimosis, aka fusing. We later discuss how her innovative stretching procedure, non-surgical lysis of clitoral phimosis, has resulted in a 76% decrease in pain and a 64% increase in orgasm rate for these women. In this video, you will learn: Discover why 23% of all women have some degree of clitoral adhesions and what symptoms this can cause. Learn about a new procedure, non-surgical lysis of clitoral phimosis, 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. Uncover the secrets to treating lichen sclerosus optimally before any procedure, including what hormones and topical treatments can be used. Watch the interview replay on non-surgical lysis of clitoral fusing https://youtu.be/F5KO5LGXRx0 Resources: Read Dr.…
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Can Constipation and Urinary Incontinence be Relieved with Pelvic Physical Therapy?

Can Constipation and Urinary Incontinence be Relieved with Pelvic Physical Therapy?

Lichen sclerosus (LS) may be a skin condition, but it affects much more than our skin. Even after you’ve managed LS symptoms like skin plaques and itching, the effects of the condition can show up in other areas of your body. Based on some research I did with LSSN members, people with lichen sclerosus often deal with other issues like constipation, urinary incontinence, fibromyalgia, and TMJ disorder at higher rates. I spoke with Holly Horikawa, a pelvic physical therapist, to learn more about why constipation and urinary incontinence are common among those with LS. If you'd like to see the full interview with Holly, join the LSSN Membership to get access to the replay and more. Why do people with LS have pelvic floor issues? “Skin doesn’t exist separately from the internal organs, from our nervous system, or our vascular system. Everything is connected,” Holly explained.  If you have pelvic…
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Looking at Lichen Sclerosus Diet Studies for Hope and Guidance

Looking at Lichen Sclerosus Diet Studies for Hope and Guidance

Lichen Sclerosus diet studies are few and far between but our guest Erica Eberl went on the hunt so we can discuss what we can learn from the science. Erica Eberl is a 23-year-old dietitian and LS warrior who was diagnosed less than a year ago. She has used her skills and resources to research LS and diet and shares her findings to help others. After Erica Eberl was diagnosed with LS, she did extensive research on Lichen Sclerosus and diet and found three studies that she was able to share. One LS diet study from Italy found that avocado and soybean extract cream and a dietary strategy improved symptoms in women with mild to moderate LS, although it wasn't as effective as corticosteroids. A case-control study from Italy found that increased consumption of carotenoids (precursors to Vitamin A) was associated with less LS. Lastly, a study from Portugal found…
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The 4 Important Elements to the Right Lichen Sclerosus Support Group

The 4 Important Elements to the Right Lichen Sclerosus Support Group

No one support group is created for everyone. Finding the right Lichen Sclerosus support group for you can take trial and error. We hope to give you some food for thought before you jump into the next one to ensure it’s the right fit. Do you need a lichen sclerosus support group? We run through many emotions when we’re first diagnosed with Lichen Sclerosus. Many people report feeling shock and disbelief that they have an incurable condition. Others feel frustration because they had to wait so long before getting real answers. Some even blame themselves or wonder if they could have prevented this. All of these emotions are valid. We all go through them. But no one should have to go through them alone. For a long time, I struggled unknowingly by myself. The thing about emotional and mental health is that sometimes you may not even know how much…
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Is the Autoimmune Protocol the Lichen Sclerosus Natural Treatment for You?

Is the Autoimmune Protocol the Lichen Sclerosus Natural Treatment for You?

Have you ever wondered if there was a Lichen Sclerosus natural treatment? Could you actually manage this condition with diet and lifestyle? 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. In this video, you will learn:1. How Angie Alt transformed the Paleo Diet into the Autoimmune Protocol to manage her Lichen Sclerosus naturally for 9 years.2. What is the Autoimmune Protocol and how can it help those living with Lichen Sclerosus?3. How to navigate the Autoimmune Protocol in a sustainable way with the help of Angie Alt’s program. https://youtu.be/6cKD3IhFOxw Resources:If you want to work with Angie or become an AIP-certified trainer, so you can use this Lichen Sclerosus natural treatment effectively, check out the links below. www.autoimmunewellness.com sadtoaip.com for AIP coaching program www.aipcertified.com Lichen Sclerosus…
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4 Brave Lichen Sclerosus Diagnosis Stories. You are NOT Alone.

4 Brave Lichen Sclerosus Diagnosis Stories. You are NOT Alone.

Listen to the podcast here: Getting a Lichen Sclerosus diagnosis can feel like a very lonely experience. Even though your experience is unique, there are aspects of it that run through thousands of people's stories all over the world. It is my honor to share diagnosis stories from a few members of the Lichen Sclerosus Support Network (LSSN). Sharing these experiences is so important because it helps us know that we are not alone. Lyna's Lichen Sclerosus Diagnosis, United States I was diagnosed about two years ago, but have had LS for five years. I was seeing my gynecologist and my general practitioner for three years, telling them about my symptoms of intense itching, burning, and fissures. Every time I'd come into the office, though, for a checkup, my fissures would be healed and nothing would be visible. They started testing me for STDs, bacterial vaginosis, yeast infection, etc., but…
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How Nutrition Therapy Could Help Manage Your Lichen Sclerosus

How Nutrition Therapy Could Help Manage Your Lichen Sclerosus

Can nutrition therapy help manage your Lichen Sclerosus? After Heather Cooan was denied care for 25 years and her Lichen Sclerosus developed into Vulvar Cancer, she fought back, healed herself, and now, as a certified nutrition therapy practitioner, she's helping others balance their hormones, identify triggers, and find hope to heal their LS.In this video, you will learn:1. What is the difference between a nutrition therapist and a dietitian?2. What is leaky gut, and how can it cause auto-immune diseases?3. What are the six buckets of triggers that can cause auto-immune diseases? Nutrition therapy is a way to look at all the factors in your diet, environment, and lifestyle to manage your Lichen Sclerosus. While challenging, it can also be rewarding. https://www.youtube.com/watch?v=dXNu_ptApCA Resources: Find out what buckets are triggering your health issues by taking Heather's test at https://heathercooan.com/lspodcast.  Dive deeper with Heather in our Holistic Healing Summit Replay video: Troubleshooting Your…
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How to be a Better Self Advocate in Your Healthcare

How to be a Better Self Advocate in Your Healthcare

If you've been diagnosed with Lichen Sclerosus, a chronic illness, or are misdiagnosed or undiagnosed, then you know how important it is to advocate for yourself in the healthcare system. In this blog post, I'll outline the steps I take in each stage of any medical appointment to be a better self advocate. Whether you're seeing a doctor, specialist, or clinician, these tips help you get the quality care you deserve. Having the right mindset helps us be better self advocates For people with Lichen Sclerosus, the best way to get the most from each doctor's visit is to be our own advocate. Many of us are rushed through an exam, talked over, given little information, and escorted out the door before we even have a chance to get comfortable on the table. The first thing we must do to become better self advocates, is change our mindset. We deserve…
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How to Overcome Appointment Anxiety so You Can be Your Best Advocate

How to Overcome Appointment Anxiety so You Can be Your Best Advocate

Listen to the podcast here We All Experience Anxiety Appointment anxiety is familiar to many LS warriors. That sneaky anxiety creeps up when you’re heading to or thinking about a doctor’s appointment. Today I want to talk about overcoming appointment anxiety. We’ve all felt anxiety. That feeling of something’s not right. Something’s going wrong. Something terrible is about to happen. The dread. The worry. The American Psychological Association defines anxiety as “an emotion characterized by feelings of tension, worry, thoughts, and physical changes like increased blood pressure.” Anxiety’s a bitch, and when it comes to LS, anxiety comes easy. Appointment Anxiety on the Drive to the Doctor’s Office First off, what do I mean by appointment anxiety? I mean the anxiety and fear we feel when going to or thinking about our first doctor’s appointment, a follow-up appointment, or an emergency appointment because something is off. Recently, I experienced appointment…
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How To Help Children Affected by Pediatric Lichen Sclerosus

https://youtu.be/n_kMuoUogL0 Introduction Today I am joined by the amazing dermatologist, Dr. Sandy Flann, who is an expert on pediatric Lichen Sclerosus. Dr. Flann was the lead clinician for pediatric dermatology at the Orpington Hospital in the UK. She now works for West Kent Dermatology. She has been treating patients for over 20 years. 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…
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How to keep your quality of life with Lichen Sclerosus

How to keep your quality of life with Lichen Sclerosus

https://www.youtube.com/watch?v=VKZTAUKpNcw Introduction Hey, welcome. I’m so glad you are here with me at Lichen Sclerosus Podcast. In this episode, I decided to take a little break from the interviews, and just speak from my heart. That is, I want to talk about not letting Lichen Sclerosus control your quality of life; not letting it rob you of who you are or the way you want to live.  Lichen Sclerosus Support Network – A Huge Thank You To Our Sponsor! Before we jump into today’s episode, however, 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. Be sure to follow them on IG and FB @lichensclerosussupportnetwork. The Ways in Which It Can Feel Like Lichen Sclerosus Controls Your Life During our last virtual meetup (get information on the meetups…
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How to Find Peace After Stress Triggers Your LS, Jennifer’s Story

How to Find Peace After Stress Triggers Your LS, Jennifer’s Story

Watch the interview here: https://youtu.be/w0GRYydvRsM Listen to the interview here Introduction and Excited Announcements In today’s episode, we are joined by Jen, who is one of my OG followers, and my ride-or-die ladies! I’m so thrilled she is here with us to share the amazing story of her journey with Lichen Sclerosus. Jen’s journey involves a traumatic birth and a lot of stress to her vulva and vagina. She discusses what this process was like, how her symptoms manifested after the birth of her daughter, her diagnosis, and how she now deals with stress and Lichen Sclerosus. Lichen Sclerosus Support Network - A Huge Thank You To Our Sponsor! Before we jump into today’s episode, however, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly, support to all Lichen Sclerosus warriors. Be sure…
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Self-Advocating To Help Beat Vulvar Cancer

Self-Advocating To Help Beat Vulvar Cancer

https://youtu.be/DC-u_GJrlIg Listen to the podcast here: Today we are joined (again) by therapeutic nutrition consultant, LS warrior, and vulvar cancer survivor, Heather Cooan. Last episode we heard her diagnosis story. Unfortunately, Heather went undiagnosed for over 25 years, allowing her Lichen Sclerosus to develop into cancer. This was a gross failure of the medical system. In today’s episode, we learn how Heather advocated for herself and fought for her values. Doing so allowed Heather’s Lichen Sclerosus to go into remission and she is now cancer-free! Her story reminds us of the importance of self-advocacy in the medical realm. Before we dive back into her story, however, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors. Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading…
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How the Medical System Failed Heather Cooan

How the Medical System Failed Heather Cooan

Watch the interview Here: https://youtu.be/OIV2Li68RJ4 Or listen to it Here: Introduction And Some Exciting New Announcements! Hey! Welcome to episode six of season 2 of Lichen Sclerosus Podcast. Today we are joined by therapeutic nutrition consultant, LS warrior, and cancer survivor, Heather Cooan. Heather’s journey from how the medical system let her down to self-advocacy and taking control of her health and body is nothing short of incredible.  Her story will be told in two parts. Today, we begin with when Heather’s symptoms first began to manifest, how they impacted her life, and how she was repeatedly let down by the system. Before we jump into her story, however, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors. Be sure to follow them on IG and FB…
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The Lost Labia Journey: Finding Community

The Lost Labia Journey: Finding Community

Watch the interview here: https://www.youtube.com/watch?v=HOMphC0g6F0 Listen to the audio only here: Intro and Some Exciting New Announcements! Welcome to the fifth episode of Season 2 of Lichen Sclerosus Podcast! Today we are continuing Jaclyn’s story. In last week’s episode, we discussed the beginning of Jaclyn’s journey with Lichen Sclerosus. Early in her journey, Jaclyn experienced painful sex and a lot of fear and anxiety concerning her body and her future. Despite having a sex therapist, a pelvic floor physiotherapist, and compassionate friends and family, she still felt very alone in her diagnosis. She longed for a community where she could find support and support others. In today’s episode, Jaclyn shares how she found community, connection, and friendship with others who had Lichen Sclerosus. She also shares her journey from painful sex to pain-free, pleasurable sex. Before we jump into part two of her story, I want to thank our sponsor,…
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Jaclyn’s Lost Labia Journey: Surviving Alone

Jaclyn’s Lost Labia Journey: Surviving Alone

https://youtu.be/CKS9Znvi38w Watch this week's interview. Listen to the Podcast here: Introduction and Some Exciting New Announcements! Hey! Welcome to the Lichen Sclerosus Podcast show notes. I have a very special LS Warrior with us today, Jaclyn, who is going to share the story of her journey with Lichen Sclerosus. Her progression from feeling alone and hopeless to empowered and thriving is captivating! Jaclyn is truly a beacon of light in our Lichen Sclerosus community and her story is sure to captivate you. Before we jump into her story, I want to thank our sponsor, the Lichen Sclerosus Support Network (LSSN) for making this podcast possible. LSSN is helping bring information, education, and most importantly support to all Lichen Sclerosus warriors. Be sure to follow them on IG and FB @lichensclerosussupportnetwork. Continue reading to the end for exciting announcements coming from LSSN! Jaclyn’s First Warning: Painful Sex Jaclyn started having symptoms…
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Carrie Bock’s LS Journey: From Pain to Love

Carrie Bock’s LS Journey: From Pain to Love

Listen to the podcast here: Welcome to the second episode of Season 2 of Lichen Sclerosus Podcast! Today we have a diagnosis story from an amazing woman, Carrie Bock, who tells us about her journey from pain and shame with sex to acceptance and empowerment of herself and her disease. Keep reading to find out how Carrie moved from painful sex from Lichen Sclerosus to being in a loving marriage, with healthy, pain-free sex. Carrie’s Christian Upbringing Carrie grew up in a conservative, Christian environment. In her house, sex was never discussed. Her family never spoke about things like going through puberty, what it meant to be a woman and sex. In her church, there was a lot of shame and fear around sex. Sex and being a sexual person were negatively portrayed. Furthermore, in middle school, the form of sex education she received was fear-based. It focused on scaring…
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How Gratitude can top Fear and Anxiety when you have Lichen Sclerosus

How Gratitude can top Fear and Anxiety when you have Lichen Sclerosus

*A general disclaimer for this episode: This post deals with some real frank talk about challenging our anxieties concerning Lichen Sclerosus via gratitude. If you are not in a place to hear this yet, please skip over this episode/post. Before wrapping up this season, I wanted to bring you all one more episode. I wanted to discuss the topic of gratitude. Particularly, how we can harness the power of gratitude to overcome fear and anxiety related to Lichen Sclerosus. How do Fear and Anxiety Impact Mental Health When You Have Lichen Sclerosus? There are so many negative emotions and thoughts that come with a Lichen Sclerosus diagnosis. For example, fear, anger, sadness, shame, resentment, and confusion are just some of the many emotions you might experience. You might have thoughts such as: “What if I can never have sex again?” “What if I can’t have kids?” “What if I get…
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My Lichen Sclerosus Diagnosis Story: Kathy

https://www.youtube.com/watch?v=goffDiGfeMI&list=PLdOEDZ7nvfRzBtrbx_D7nlJtMArclSm0c I'm so excited to bring back one of my favorite guests to discuss my Lichen Sclerosus diagnosis story. Lou! If you don't know who Lou is go back and listen to the episode "Lou's Diagnosis Story". She is so much fun and I could not wait to speak with her again. We go in-depth on my lichen sclerosus diagnosis story and discuss some of the decisions I made. My hope is that you learn something from my experiences or at the very least know that you are not alone. Please reach out: IG - https://www.instagram.com/lichensclerosuspodcast/ FB - https://www.facebook.com/lichensclerosussupportnetwork Don't forget to sign up for the virtual meetup.
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How to STILL have a great relationship DESPITE Lichen Sclerosus

How to STILL have a great relationship DESPITE Lichen Sclerosus

Introduction Hey! Welcome! Have you ever thought about how Lichen Sclerosus will or has affected your relationship? Have you felt like Lichen Sclerosus was a death sentence to your current or future relationships? If yes, you want to listen to this episode. In this episode, I provide actionable tips about what we can do for our partners, what they can do for us, and what we can do for each other in order to have a great relationship. So, grab your partner and give it a listen together or have them listen to it on their own. Inspiration for the Episode This podcast episode was inspired by a man who reached out to me on Instagram. He was looking for advice on how he could support his girlfriend who was newly diagnosed with Lichen Sclerosus. It was incredibly touching to have a conversation with someone who genuinely wanted to learn…
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7 Ways to Stop Vulvar Itch From Lichen Sclerosus

7 Ways to Stop Vulvar Itch From Lichen Sclerosus

Do you suffer from vulvar itch? You know the one I'm talking about. The one that makes your vulva feel like ants are crawling all over it. That unforgiving desire to scratch. Yeah, that one. This week we discuss why we itch when we do and I give you seven ways ladies combat the itch. Itching has always been my primary symptom. I detailed some of my struggles with it in a previous episode Symptoms of Lichen Sclerosus As always, don't forget to subscribe and share. Follow me on Instagram @lichensclerosuspodcast and on FB @lichensclerosussupportnetwork. Vulvar Itch Resources: https://www.medicalnewstoday.com/articles/326495
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The Mental Health Side of Lichen Sclerosus

The Mental Health Side of Lichen Sclerosus

Introduction This week I make my contribution to World Mental Health Day and took a closer look at the mental health side of Lichen Sclerosus. In this episode, we discuss what research has been done on Lichen Sclerosus and mental health. Further, I highlight some stories from other LS warriors who talk to us about how Lichen Sclerosus has impacted their mental health. Important Message about Lichen Sclerosus and Your Mental Health First and foremost, when it comes to Lichen Sclerosus and mental health issues, you are not alone. You aren’t alone in feeling isolated, anxious, confused, scared, frustrated, lower self-esteem, etc. Many of us struggle with similar feelings. In fact, I often hear women reach out to me saying they find the mental health aspect of Lichen Sclerosus to be worse than the physical. The Research on Lichen Sclerosus and Mental Health Study #1 Perhaps unsurprisingly, the research on…
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Time to Check your Vulva!

Time to Check your Vulva!

Did you know you were supposed to check your vulva each month? Yep! But what exactly does that mean? What are we looking for? What do we do if something doesn't look right? In this episode, I share my first experience checking my vulva and provide you with step-by-step directions on how to check yours. First time I checked my vulva So here's the thing. I started this podcast. Being completely ignorant to the practical knowledge that needed to be known with Lichen Sclerosus. I didn't know I was supposed to be checking my vulva until I started going on Instagram and following some wonderful accounts that gave me so much information. So I started seeing posts saying, "It's time of the month to check your vulva." And I'm like, "Okay. I'm supposed to check my vulva. Oh, okay. I didn't know that my doctor didn't tell me that." I…
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Lichen Sclerosus Basics

Lichen Sclerosus Basics

Introduction Hey, welcome! This week I wanted to create an episode for all my recently diagnosed LS warriors, specifically, I want to run through the basics of Lichen Sclerosus (LS). I’m sure you’ve been everywhere online from the Mayo Clinic to Wikipedia in search of information. If so, you’ve probably encountered the same content, riddled with medical terms you then have to Google because you are not a medical professional. Trust me, I’ve been there! This episode will comprise a broad overview of what you need to know to take care of yourself. We will discuss anatomy, what LS is and what causes it, symptoms, treatments, monitoring, and best practices. Anatomy Basics 101 It is critical to use the proper terms for your anatomy when discussing LS. For example, I didn’t use the word vagina correctly until I started researching LS. This is because growing up, ‘the vagina’ referred to…
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Refocus Your Subconscious Away From Lichen Sclerosus

Refocus Your Subconscious Away From Lichen Sclerosus

Has lichen sclerosus taken over most of your waking thoughts? Does it have you questioning your womanhood or sex appeal? Has it made you feel less than? Then you need to listen to this episode. This week I speak with Dr. Anne Whitehouse, who has developed a process to refocus our subconscious from our illness back onto the things that are truly important to us. Her research is grounded in 20 years of pioneering research to dig deep into how women can stop holding themselves back from growth and success, and is now available in her book Pull Back Your Power. Through daily practice, she says she has been able to work through anxiety, stress, and fear brought on by the deeply ingrained pressures put on us by society, including those caused by chronic illnesses like lichen sclerosus. If you would like a chance to when a personally signed copy…
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Listen to Your Body

Listen to Your Body

This week I went off script and had a frank talk about what's been going on with me. It's so important to listen when your body is telling you to slow down or something is wrong. Hopefully, I will be back to full strength next week and we will be back to your regularly scheduled program. Don't' forget to follow me on social media so you can get notified of my live events. Facebook - https://www.facebook.com/lichensclerosussupportnetwork/ Instagram - https://www.instagram.com/lichensclerosuspodcast/ Youtube - https://www.youtube.com/channel/UCQXU-nhfnn-nScR_5VyUdCQ Join a virtual meetup for support.
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