Unraveling the Hormone and Microbiome Puzzle in Lichen Sclerosus

Unraveling the Hormone and Microbiome Puzzle in Lichen Sclerosus

Hey friend! I recently had the pleasure of chatting with Dr. Melissa Mauskar, a true rockstar in the world of vulvar health research. She illuminated some fascinating new findings about the hormone and microbiome landscapes in lichen sclerosus. I walked away feeling so hopeful about how this work might improve patient care down the road! 🙌 Dr. Mauskar broke down the key takeaways in an accessible way - no need for a medical degree to follow along! Whether you have lichen sclerosus yourself or treat patients, I think you'll find this chat insightful. A few highlights that caught my ear: The role of progesterone and other hormones in LS skin How treatment impacts microbiome diversity Exciting areas for future research. Dr. Mauskar's passion for patient-centered care and collaboration across specialties to move the needle is inspiring. She helped me understand how this study into hormones and the vulvar microbiome in…
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Expiry Dates and Lichen Sclerosus Medication

Expiry Dates and Lichen Sclerosus Medication

Introduction Treatments get a lot of discussion here at Lichen Sclerosus Support Network, at the doctor’s office, and in the scientific literature. And rightly so! Treatment is a very important topic. Often, discussions about treatment center around the proper application, side effects (risks versus benefits), and the science behind them. One thing that gets a lot less attention (and discussion) is expiry dates and lichen sclerosus medication. Expiry dates are important when using medications for lichen sclerosus, so today, we are going to chat about all things lichen sclerosus medication and expiry dates. Do expiry dates matter? Can you go past the expiry date? How to check your expiry date? These are all questions we will address in today’s post. Our philosophy here at Lichen Sclerosus Support Network is always to present the evidence and/or what the experts are saying so you can make informed decisions about your body and…
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Phototherapy for Lichen Sclerosus

Phototherapy for Lichen Sclerosus

Introduction Topical corticosteroids and topical calcineurin inhibitors are the two main approved treatments insofar as evidence-based medicine is concerned. However, some more experimental therapies are out there, such as laser, platelet-rich plasma, and phototherapy. We have discussed ablative and non-ablative lasers, as well as platelet-rich plasma. Today, as part of our experimental treatment series, we will be discussing phototherapy for lichen sclerosus. We will answer questions like what phototherapy is, who performs it, what to expect, and what the science says about it.  Our philosophy here at Lichen Sclerosus Support Network is always to present the evidence and/or what the experts are saying so you can make informed decisions about your body and healthcare plan. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about phototherapy for lichen sclerosus. Importantly, what I share is my interpretation of the science and data.…
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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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Vulva Awareness and Appreciation with Jaclyn & Penny

Vulva Awareness and Appreciation with Jaclyn & Penny

National Vulva Awareness Day 2023 Why do we Have an Event for Vulvar Awareness and Appreciation Did you know 8 out of 10 folks with vulvas do not know all the names of their anatomy or what part does what? Yes, we have a major lack of vulvar awareness out there. Vulvar health is in trouble because of stigma and lack of awareness and education, and we want to turn that around! April 21st is National Vulva Awareness Day! National Vulva Awareness Day was created in 2022 by our dear friends and allies to the lichen sclerosus community, SweetSpot Labs, to bring awareness to a part of the body that is often overlooked and to break the stigma around the vulva. This year, we at Lichen Sclerosus Support Network wanted to hold an event on this special day to raise awareness and cultivate some vulva appreciation and love. Introduction In…
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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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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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