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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The 4 Important Elements to the Right Lichen Sclerosus Support Group

The 4 Important Elements to the Right Lichen Sclerosus Support Group

No one support group is created for everyone. Finding the right Lichen Sclerosus support group for you can take trial and error. We hope to give you some food for thought before you jump into the next one to ensure it’s the right fit. Do you need a lichen sclerosus support group? We run through many emotions when we’re first diagnosed with Lichen Sclerosus. Many people report feeling shock and disbelief that they have an incurable condition. Others feel frustration because they had to wait so long before getting real answers. Some even blame themselves or wonder if they could have prevented this. All of these emotions are valid. We all go through them. But no one should have to go through them alone. For a long time, I struggled unknowingly by myself. The thing about emotional and mental health is that sometimes you may not even know how much…
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What I Want Doctors To Know: LS Edition

What I Want Doctors To Know: LS Edition

Introduction Many folks with lichen sclerosus have complicated relationships with their doctors and healthcare providers. If you ever felt gaslit or dismissed by your doctor, you are not alone. Similarly, if you have trust issues with doctors, you are also not alone. In this blog post, I am writing from the heart about what I want doctors who diagnose and treat lichen sclerosus to know. It is a call to do better and show up with compassion and empathy for your patients.  Of course, there are some wonderful providers out there who have a wealth of knowledge and who treat their patients as fellow human beings with respect and dignity - thank you to those of you already doing this work. Stay in the Loop! Never Miss a Blog Post, YouTube Video, Podcast Episode, Event, or Product Launch by Getting on Our Newsletter! Sign up to LSSN’s monthly newsletter here.…
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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 be a Better Self Advocate in Your Healthcare

How to be a Better Self Advocate in Your Healthcare

If you've been diagnosed with Lichen Sclerosus, a chronic illness, or are misdiagnosed or undiagnosed, then you know how important it is to advocate for yourself in the healthcare system. In this blog post, I'll outline the steps I take in each stage of any medical appointment to be a better self advocate. Whether you're seeing a doctor, specialist, or clinician, these tips help you get the quality care you deserve. Having the right mindset helps us be better self advocates For people with Lichen Sclerosus, the best way to get the most from each doctor's visit is to be our own advocate. Many of us are rushed through an exam, talked over, given little information, and escorted out the door before we even have a chance to get comfortable on the table. The first thing we must do to become better self advocates, is change our mindset. We deserve…
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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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