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 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

My Lichen Sclerosus Diagnosis Story: Kathy

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 signup 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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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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What Can We Learn From Breast Cancer Awareness?

What Can We Learn From Breast Cancer Awareness?

Introduction Hey! Welcome to today’s episode. I’m so glad you are with us! Today is going to be a little different. In honor of World Voice Day, that is, a nationwide event dedicated to celebrating the importance/power of the voice in our lives, I have decided to use my voice to discuss the breast cancer awareness movement. Specifically, I trace the history of this grassroots movement from the 1960s to today and highlight what we can learn from them in raising awareness for Lichen Sclerosus. Please read until the end for some exciting news about the Lichen Sclerosus Support Network and how YOU can use your voice to help us out! Lichen Sclerosus is a Marginalized Disease Here on the Lichen Sclerosus Podcast, I talk about LS a lot! I mean, I have a whole podcast dedicated solely to this topic. However, LS is a marginalized disease that many medical…
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How to have BETTER sex even though you have Lichen Sclerosus.

How to have BETTER sex even though you have Lichen Sclerosus.

Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you. I also want to set proper expectations. Lichen Sclerosus has many symptoms and progressions. Unfortunately, there are too many and span too many degrees for me to cover in one article. This piece will focus on women who do not suffer from severe fusing or other sexual complications that may require surgery. To honor you that are suffering these awful symptoms, I hope to bring in someone knowledgeable about these cases. I do not feel comfortable speaking on it because those are not my experiences and I am sensitive to your plight. Does Lichen Sclerosus Affect Our Sex Life?  How does having Lichen Sclerosus change our sex life? How do we talk to our partners about sex? What can we do to make…
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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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I have Lichen Sclerosus. Hello.

I have Lichen Sclerosus. Hello.

Hi! My name is Kathy. I have been diagnosed with Lichen Sclerosus for two years but have suffered much longer. I had minimal knowledge of the condition and was okay with that. That was until about two weeks ago when I had the worst outbreak since I started my medication. I had no one to talk to or ask questions. I decided to find my community and learn as much as possible about this illness. Lichen Sclerosus Support Network, a nonprofit organization dedicated to sharing evidence-based education to help people living with LS improve their symptoms and quality of life. We have a private, off-social network community through our Membership to help people living with LS. This is a journal of my learning about and living with Lichen Sclerosus. Please join the community, and let's give each other hope and support! Edited in 2022 to add: Fast forward two years,…
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