Diagnosis story Archives

Lisa’s Lichen Sclerosus Pregnancy Journey

Nov

Lisa’s Lichen Sclerosus Pregnancy Journey

Introduction Many folks have questions about lichen sclerosus and pregnancy. We address the science behind lichen sclerosus and pregnancy here. However, we want to address this from a more lived experience perspective today. A while back, I opened a call on my Instagram page for folks who were willing to share their pregnancy and lichen sclerosus experience. Today, I’m sharing Lisa’s LS and pregnancy journey to help raise more awareness about LS and pregnancy. Lisa and I met for a virtual call to chat about her experience. What follows is my re-telling of her journey. Lisa’s first pregnancy Lisa had had LS symptoms since she was a little girl. However, back then, the doctors were clueless as to why she was always itchy and uncomfortable. Consequently, she had to just kind of live with these symptoms. By the time she got pregnant at 25, she was symptomatic but still did…

LS Zine Giving Voice to Patients Around the World

Jun

By Kathy

Kathy Blog

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…

Burnt – Stop Ignoring my (Vulvar/Pelvic) Pain

Jan

By Jaclyn Lanthier

Jaclyn Blog

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…

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

Jan

By Kathy

Kathy Blog

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…

How the Medical System Failed Heather Cooan

Mar

By Kathy

Podcast

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…

The Lost Labia Journey: Finding Community

Mar

By Kathy

Podcast

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,…

Jaclyn’s Lost Labia Journey: Surviving Alone

Feb

By Kathy

Podcast

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…

Carrie Bock’s LS Journey: From Pain to Love

Feb

By Kathy

Podcast

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…