Vulvar Lichen Sclerosus and Skin Color Changes

Vulvar Lichen Sclerosus and Skin Color Changes

Introduction Lichen sclerosus can cause the skin of the vulva to change color in many people with LS. However, we frequently get asked questions like, “Why is the color changing?” and “What does this color mean?” Today, we are going to discuss all things lichen sclerosus and skin color changes. We will address hypopigmentation, hyperpigmentation, what to do if you notice new color changes, and how these changes differ in skin of color. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus and skin color changes. Importantly, what I share is my interpretation of the science and data. **If this post is helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today, volunteer with us, or share our posts in your support groups. What are Clinical Signs? First…
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Vulvar Lichen Sclerosus in Darker Skin Types

Vulvar Lichen Sclerosus in Darker Skin Types

Introduction In today's video, we are joined by Dr. Akinshemoyin Vaughn to discuss vulvar lichen sclerosus (VLS) in darker skin types. We talk about misdiagnoses, how VLS presents in folks of darker skin types, and how lichen simplex chronicus and erosive lichen planus present in folks of darker skin types. We chat about so much, including cultural and ethnic backgrounds and how they influence diagnosis, treatment, and management, taboo & stigma in certain communities, and so much more. 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. Importantly, what I share is my interpretation of the science. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a…
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Lichen Sclerosus Treatment Versus Adjunct Therapy

Lichen Sclerosus Treatment Versus Adjunct Therapy

Introduction We are switching gears a little for today. This post will discuss the difference between treatment and adjunct therapies and what this means for your lichen sclerosus journey. This is an opinion piece. You are welcome to share your thoughts in the comment section at the end. I learn so much from this beautiful community, and you never stop teaching me; I am grateful for that. Defining Treatment, Adjunct Therapy, and Cure First of all, let us define some key terms: Treatment: The definition of treatment is, "Medical treatment means the management and care of a patient to combat condition or disorder" (University of Wisconsin). Treatment can either manage a condition or cure the condition. Primary Treatment: A primary treatment is the main treatment used to manage or cure a condition. It is often the one that has the most scientific evidence behind it and the best success rate. Adjunct Therapy: According…
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Lichen Sclerosus Treatment Series: Calcineurin Inhibitors

Lichen Sclerosus Treatment Series: Calcineurin Inhibitors

Introduction We are continuing our lichen sclerosus treatment series today by looking at topical calcineurin inhibitors. In previous posts, I discussed topical corticosteroids and their associated side effects. Be sure to check out those posts first! In today's post, you will learn: What topical calcineurin inhibitors (calcineurin inhibitors or TCIs for short) are How calcineurin inhibitors work Their side effects and risks And so much more! *This post is evidence-based; I draw on the medical literature to share what you need to know about calcineurin inhibitors and lichen sclerosus. Importantly, what I share is my interpretation of the science and data. What the Heck are Topical Calcineurin Inhibitors (TCIs)? TCIs are topical, non-steroidal immunosuppressant medications. Topical means the medicine is applied directly to the body in a cream or ointment base instead of taking an oral medication. An immunosuppressant medication works to keep your immune system functioning optimally. For example, these medications can…
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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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Lichen Sclerosus Treatment Series Part 2: Steroids

Lichen Sclerosus Treatment Series Part 2: Steroids

Introduction Treatment is a fundamental piece of getting your symptoms under control and getting into remission. However, many doctors do not discuss treatment options with us, let alone how to use our treatment, and what the benefits and risks are. Therefore, I decided to start a treatment series on the blog where I go through different treatment options, what the science says about them, what the risks and benefits are, etc. This series starts with the gold standard for LS treatment; steroids. In my last post, I dicussed what lichen sclerosus is, why steroids are the gold standard treatment, what version is best, how often you should use them, and the best practice for the application. Read that post here. In today’s post, I review different side effects that *may* accompany steroid use and what you can do if they happen to you.  *This post is evidence-based; I draw on…
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Lichen Sclerosus Treatment Series Part 1: Steroids

Lichen Sclerosus Treatment Series Part 1: Steroids

Introduction “You have lichen sclerosus. It’s considered autoimmune. You are at a slightly higher risk for developing vulvar cancer. There is no cure. Apply your steroids daily”. When I was diagnosed with LS, that is all the information and guidance I got from my general physician. “Apply your steroids daily” is vague and unhelpful. “How many times a day”, I wondered, “and where and how should I be applying the medication”?  Many of us aren’t given information about our treatment plan when we are diagnosed. Your treatment plan is one of the most fundamental pieces with respect to managing your symptoms, slowing the progression of the disease, getting into remission, and reducing your chances of developing vulvar cancer.  So where is this information if the doctors do not give it to us? Part One of Ongoing Lichen Sclerosus Treatment Series & Disclaimer Well, I’ve spent the better part of two…
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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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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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