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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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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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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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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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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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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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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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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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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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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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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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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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 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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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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