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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