LSSN End-of-Year Wrap-Up and Hope for the Future

LSSN End-of-Year Wrap-Up and Hope for the Future

Introduction I can’t believe I’m saying this, but 2023 is moving quickly towards a close. With that, we at LSSN wanted to do a little end-of-year reflection on this past year and offer some hope for the future. We will review some of the key events and milestones from LSSN, as well as exciting LS research that came out and what to look out for from us in 2024. If you're more of a visual person, enjoy this year-end review with our Executive director Kathy Ruiz-Carter. https://youtu.be/MejM6rg2gMc First Up, Some Gratitude First of all, we want to extend a tremendous and heartfelt thank you to our beautiful LS community. We appreciate all that you do to spread the word about us, telling your doctors about LSSN, liking and sharing our content, and donating. Kathy and I have the special honor of knowing many of you through the LSSN’s free bi-weekly…
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Sexual Health Resources for Lichen Sclerosus

Sexual Health Resources for Lichen Sclerosus

Introduction For today’s video, we are going to chat about sexual health resources for lichen sclerosus. I begin by reviewing what a sex therapist is and how to find and vet a sex therapist. After, I highlight a number of different sexual health resources for lichen sclerosus as not everyone is able to work with a sex therapist. Such resources include educational podcasts, key figures to follow on social media, books and practices, and events and workshops. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=XCThBj6-ggo Free Vetting a Potential Sex Therapist…
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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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How Sex Therapy can Help with Lichen Sclerosus

How Sex Therapy can Help with Lichen Sclerosus

Introduction For today’s video, I share my journey with lichen sclerosus and sexual health. Specifically, I discuss how my sexual health was impacted by lichen sclerosus. I share what prompted me to find a sexy therapist and how sex therapy can help with lichen sclerosus. This video is very personal and vulnerable. In our next video, we will approach this topic from a more practical lens by sharing how to find a sex therapist. There will also be free and paid sexual health resources discussed in that video as well. Be sure to like this video and subscribe to our channel for more educational LS content. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. If this video was helpful to you, we’d love your support so we can continue providing important education like this.…
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Low Libido and Lichen Sclerosus: Can You Get It Back?

Low Libido and Lichen Sclerosus: Can You Get It Back?

For today’s video, I am joined by the brilliant Dr. Lori Brotto to discuss all things low libido and lichen sclerosus. We chat about what libido is, different categories of libido, lichen sclerosus, and libido, and different ways to work on increasing libido with lichen sclerosus. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today. If you need more support, join our FREE virtual LS support meetups here. https://www.youtube.com/watch?v=g4sB8sbe_xk Dr. Lori Brotto's Bio & Main Links Dr. Lori Brotto is a Professor in the UBC Department of Obstetrics and Gynaecology, where she holds a Canada…
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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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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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Do you want to Get Your Sexy Back? You need this program.

Do you want to Get Your Sexy Back? You need this program.

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…
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Burnt – Stop Ignoring my (Vulvar/Pelvic) Pain

Burnt – Stop Ignoring my (Vulvar/Pelvic) Pain

Introduction Hey, beautiful soul. Today we have a guest post by the amazing Sabrina Sarro (they/them). Sabrina is a lead psychotherapist and clinical supervisor at Gray Matters, in New York City. They have their Master’s in social work (MSW), focusing on advanced clinical practice and intersectional social issues. Additionally, they MFA (Master's in Fine Arts) in Nonfiction and are a certified clinical trauma professional and are certified in DBT. They are also a PCOS and vulvovaginal health specialist who helps folks with chronic pelvic pain, painful sex, and other genital health conditions. Sabrina is especially passionate about creating a safe container for people of color (POC), queer, and TGNC (transgender and gender non-conforming) folks to explore their physical and mental health in order to heal. Learn more about them by clicking here. Sabrina lives with vulvar and pelvic pain and is still searching for a diagnosis, after seeing over 20 doctors…
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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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The Importance of Feeling Heard

The Importance of Feeling Heard

Introduction Hey, beautiful soul. It’s Jaclyn from The Lost Labia Chronicles in partnership with Lichen Sclerosus Support Network (LSSN). Yup! If you follow me on social media (@thelostlabiachronicles) or are on my newsletter, you already know that I have partnered with LSSN to help reach more people with lichen sclerosus content and education. My goal in creating TLLC was always to help support folks in their LS journey by providing evidence-based information and to help folks with LS feel heard and supported. I was a one-woman team from 2021-2022.  However, I believe in joining forces with other powerful LS warriors in the LS community, we can reach even more people and have a deeper impact. Thus, I have partnered up with LSSN and will be creating content on LSSN’s website. This way folks with LS don’t have to go through multiple websites to find information and support resources; everything you…
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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 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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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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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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Lou’s Lichen Sclerosus Diagnosis Story

Lou’s Lichen Sclerosus Diagnosis Story

Our sister in Lichen Sclerosus, Lou, from Australia, shares her diagnosis story with us. Her trials span everything from doctors to mental health. Be prepared to smile and laugh because we had fun. And although our stories are individual to ourselves, we share many similarities. If you haven't heard my story yet, you can find it here lssupport.net/my-lichen-sclerosus-diagnosis/. If you need help dealing with appointment anxiety, check out the podcast episode “How to Overcome Appointment Anxiety so You Can be Your Best Advocate”. Share in the sisterhood of LS and stay tuned to the end for an exciting announcement. If you need help preparing for a visit with a practitioner, check out LSSN's guide for advocating for yourself. Don't forget to subscribe to be notified of the next episode, or find all the podcast episodes here for more education and diagnosis stories. Instagram @lichensclerosuspodcast Facebook @lichensclerosussupportnetwrok Resources: Video Lou shared…
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Lichen Sclerosus Clinical Trials with Leia Mitchell

Lichen Sclerosus Clinical Trials with Leia Mitchell

Leia Mitchell and I are back with the second part of our conversation. This week we discuss clinical trial research around Lichen Sclerosus. Leia tells us where the research is on LS mental health and where she sees future research heading. We look at what makes a good trial and the risk we must consider when looking to participate in a trial. So if you're interested in where the science is going, check this episode out. Did you listen to part one of Leia and I's conversation to learn what the science says about Lichen Sclerosus today? Don't forget to subscribe so you get notified when the next episode drops. Resources: clinicaltrials.gov http://www.vulvodynia.com/research
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Symptoms of Lichen Sclerosus

Symptoms of Lichen Sclerosus

Everyone suffers from different symptoms of Lichen Sclerosus. Some are affected by one or a variety of common symptoms, such as itching and burning. While others, who have gone untreated, can develop severe symptoms such as fusing or vulval cancer. Consequently, these symptoms are what the doctors look for and treat. Unfortunately, most of us will suffer harder from secondary symptoms. The mental health issues that develop because of a Lichen Sclerosus diagnosis. They are many and can run deep. The scariest part is we may not even realize we are suffering or need help. Common Symptoms: Itching (mostly at night) Burning and soreness White ashy skin or patches Fissures, ulcers, nonhealing legions, and blood blisters Excessive sweating between your legs Misshapen vulva Chronic urinary tract or yeast infections Severe Symptoms: The fusing of the labia The fusing of the clitoral hood Valvular scarring Secondary Symptoms: Depression Isolation Fatigue Anxiety…
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