Diagnosis story Archives

I Didn’t Expect Another Diagnosis… Living with Hashimoto’s + Lichen Sclerosus

Mar

I Didn’t Expect Another Diagnosis… Living with Hashimoto’s + Lichen Sclerosus

Introduction - Returning to My Roots: A Raw and Honest Conversation Today, I’m going back to my roots, sharing openly, honestly, and vulnerably about a recent shift in my health. I was diagnosed with Hashimoto’s thyroiditis, an autoimmune condition that affects the thyroid, and it’s changed the way I understand my body, my symptoms, and my journey with vulvar lichen sclerosus (VLS). This isn’t just another diagnosis. It’s a piece of a much bigger picture. I hope sharing my story (once again) will help more people. Watch the video below. https://www.youtube.com/watch?v=bAHQWywATRo Understanding Hashimoto’s in the Context of Autoimmune Disease Hashimoto’s is an autoimmune condition where the immune system attacks the thyroid. This can impact energy levels, metabolism, weight, mood, and overall well-being. But what’s important (and often not talked about enough) is that autoimmune diseases don’t tend to exist in isolation. If you have one autoimmune condition, like vulvar lichen…

Living with Lichen Planus & Lichen Sclerosus | Melanie’s Story of Diagnosis, Pain & Hope

May

By Jaclyn Lanthier

Jaclyn Video

Living with Lichen Planus & Lichen Sclerosus | Melanie’s Story of Diagnosis, Pain & Hope

Introduction to Melanie's Story of Living with Lichen Planus & Lichen Sclerosus Today, we are joined by brave lichen scleorsus & lichen planus warrior, Melanie, to witness her incredible journey. We chat about pediatric vulvar skin conditions, lichen sclerosus, and various types of lichen planus in multiple body parts. Melanie's story is about pain, strength, wisdom, and hope. We know there are many lichen planus warriors out there and warriors with both lichen sclerosus and lichen planus. We hope this video helps raise awareness around these conditions. Melanie's Bio Hi, I’m Melanie, a 23-year-old living in the Netherlands. I’ve been living with Lichen Sclerosus and Lichen Planus since childhood, though it took time to grow into my diagnoses and really understand what they meant for me. It’s been a journey of learning, coping, and finding ways to live fully with chronic conditions. I share my story to help others feel…

Talking to Others about Vulvar Lichen Sclerosus or Lichen Planus

Oct

By Jaclyn Lanthier

Jaclyn Blog

Talking to Others about Vulvar Lichen Sclerosus or Lichen Planus

Introduction Talking to others about lichen sclerosus can feel incredibly daunting and scary. You may have no idea where to start. Perhaps you’re nervous about how they will react or how to prepare for the conversation. If so, don’t worry–we got you! In today’s post, we are going to walk you through the process of talking to others about lichen sclerosus. In this post, we discuss: The feeling of isolation and shame that some people experience with a VLS or VLP diagnosis Benefits of talking to others about your condition Challenges of talking to others about your condition Tips and guidance for talking to others about your condition My (Jaclyn’s) experience in telling others about my vulvar lichen sclerosus diagnosis Disclaimers *This post is not evidence-based and comes from my (Jaclyn’s) personal experience. **If this post is helpful to you, we’d love your support so we can continue providing important…

Missed Opportunities and Vulvar Lichen Sclerosus

Jul

By Jaclyn Lanthier

Jaclyn Video

Missed Opportunities and Vulvar Lichen Sclerosus

Introduction In today's video, Dr. Sophie Rees and I discuss her research on missed opportunities and vulvar lichen sclerosus, focusing on instances where healthcare providers missed opportunities for better care in diagnosing VLS. Sophie Rees is a medical sociologist and applied health researcher whose main research interests are vulval disease, especially LS, based at the University of Bristol in the UK. She was Chief Investigator of a mixed methods study called ‘Living with Lichen Sclerosus’ that explored the experience of people with LS using interviews, focus groups, and a survey. She produced a short film based on the interview findings, which is aimed at healthcare professionals to help them understand what it is like to live with LS. Follow Dr. Rees on Instagram and Twitter as @drsophierees Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you,…

Jun

By Jaclyn Lanthier

Jaclyn Blog

Vulvar Lichen Sclerosus and Fissures

Introduction Today is part one of our 2024 series on vulvar lichen sclerosus (VLS) and fissures. Before diving into the science of VLS and fissures, though, I wanted to share a more personal post about my experience with fissures. This is a very vulnerable share, but I hope I can raise more awareness and help others by putting myself out there. My Long-Term Relationship with Fissures Fissures and I have been in a long-term, complicated relationship ever since I was 20. They first made their appearance after I had sex. Mid-sex, I remember feeling like I tore or something. I was confused. After, when I peed, I remember it stinging. At first, it would only happen sometimes. Sometimes, I would have sex and be fine; other times, I would have sex, and I’d end up with a fissure. However, as the years went on, my fissures became more of a…

Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

May

By Jaclyn Lanthier

Jaclyn Blog

Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

Introduction Content Warning: anti-fatness, anti-fat bias, weight loss, medical abuse, and medical neglect. Misdiagnoses are common in the vulvar lichen sclerosus (VLS) community. Many of us, myself included, endured years of pain and suffering, only for healthcare providers to dismiss us. Many factors contribute to misdiagnosis. For example, a lack of provider education about vulvar lichen sclerosus can lead to misdiagnoses; lack of awareness may be another factor. Those two points get a lot of attention when it comes to misdiagnosis. However, something that gets less attention is discriminatory factors that can lead to misdiagnoses. Today, we have the honor of featuring a guest post by Chris Barbieri on the topic of anti-fat bias, misdiagnosis, and vulvar lichen sclerosus. Anti-fat bias is a form of discrimination that involves prejudiced attitudes against someone's body size or weight. Chris is one of Jaclyn's oldest and dearest friends. She is a brilliant human…