Giving Yourself Grace

Giving Yourself Grace

Listen to the podcast here: Introduction Hey! Welcome! We recently held our annual (W)holistic Healing Summit. If you're not familiar with it, check out this post. If you are, then you know it's a major event full of education and community. I have a small team of volunteers that help me pull it off, but I do the bulk of the work. My planned recuperation break was rudely interrupted by my second autoimmune condition, Sjogren's. I spent days barely able to walk around my bed to get to the bathroom. Joint's sore. Dehydrated with cracked lips and tension headaches. It was not the break I needed. So, I thought it was the perfect time to bring this episode of the Lichen Sclerosus Podcast back. I originally recorded this before my Sjodren's diagnosis. At the time, I had no idea what had zapped my energy out of the blue. I'm thankful…
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Pain from Lichen Sclerosus: The Fundamentals

Pain from Lichen Sclerosus: The Fundamentals

Introduction Do you have pain from lichen sclerosus? Does the pain make it hard to sit, walk, have sex, and more? Are you looking for things to help manage your pain? Look no further! In today’s blog post, I will discuss pain from lichen sclerosus and what you can do to help manage your pain. This post is mainly based on my lived experience with lichen sclerosus. In my next blog post, I will discuss chronic pain and lichen sclerosus from an evidence-based perspective. This will include complex vulvar pain that persists even after the patient is in remission and what to do if that is your case. Pain from Lichen Sclerosus Pain from lichen sclerosus is a common symptom. While many of us experience pain from lichen sclerosus, that pain presents differently for each person. For example, some folks may rate their pain as mild-moderate. In contrast, others will…
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Is Lichen Sclerosus Lowering Your Sex Drive?

Is Lichen Sclerosus Lowering Your Sex Drive?

*Just a quick warning, I will be talking about how Lichen Sclerosus affects our sex and sex drive. If you are sensitive to that, I completely understand, but this may not be the blog/podcast for you. **Another caveat. This episode is geared towards women with moderate to mild Lichen Sclerosus and not for those with severe Lichen Sclerosis (i.e., those with fusing across the vestibule/vaginal opening) or those with vaginismus or vulvodynia. I’m excited to bring some fresh insights to the podcast after our Lichen Sclerosus virtual meet-up. As many of you living with Lichen Sclerosus already know, Lichen Sclerosus can negatively impact our sex drive; sometimes, it stops it altogether. This week we dive into the topic of Lichen Sclerosus, how it can lower our sex drive, and, most importantly, how we can become empowered to get it back! During our Lichen Sclerosus Virtual Meetup, I discovered a trend…
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Pediatric Lichen Sclerosus: What You Need to Know to Support your Child

Pediatric Lichen Sclerosus: What You Need to Know to Support your Child

Introduction There are a lot of myths and misinformation floating around the world wide web when it comes to lichen sclerosus. You have probably heard a few already. For example, you might have read that "lichen sclerosus only occurs in post-menopausal folks." This is a myth that has been thoroughly debunked by science. We know that lichen sclerosus can affect any age group, including young children, premenopausal folks, and folks in perimenopause/menopause/post menopause. You read that right! Children can get lichen sclerosus. The medical term for this is pediatric lichen sclerosus.  In this post, we will discuss the fundamentals of pediatric lichen sclerosus. I share the main signs and symptoms to look out for, how LS is diagnosed in children, and what the treatment plan looks like. Additionally, I share what to do if you suspect your child might have lichen sclerosus.  *This post is evidence-based; I draw on the…
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Grooming with Vulvar Lichen Sclerosus (with video)

Grooming with Vulvar Lichen Sclerosus (with video)

https://www.youtube.com/watch?v=Vlmkb9CO_bA Dr. Cynthia Wesley (aka Dr. Cyn) is a board-certified OBGYN with over 16 years of experience and a vulvar skin expert. Dr. Cyn is passionate about vulvar care, hygiene, and grooming. She will share her tips for grooming with vulvar Lichen Sclerosus. I learned so much in this episode and I hope you do as well. Be sure to scroll to the resources section for all of Dr. Cyn’s information, including her social media which you will definitely want to subscribe to. Dr. Cyn does Facebook and Instagram lives every Thursday and they are informative and fun! Using the Bathroom with Lichen Sclerosus - Tips From an Expert Before jumping into vulvar grooming with Lichen Sclerosus, Dr. Cyn starts with the basics - going to the bathroom, of course! Recommendation #1: Because the skin of the vulva is more sensitive and prone to tearing and fissures, Dr. Cyn recommends…
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Lichen Sclerosus & Surgery: What Does the Science Say?

Lichen Sclerosus & Surgery: What Does the Science Say?

Introduction Topical corticosteroids are the gold standard treatment; read about it here and here. While steroids are effective in reducing inflammation, slowing the progression of the condition, getting patients into remission, and reducing the likelihood of developing vulvar cancer, they cannot reverse existing vulvar fusing/scarring. Fusing and scarring, however, can affect the functioning of your vulva. If your fusing and scarring are causing functional issues, you *may* be a candidate for surgery.  In this post, I will review the surgery for clitoral fusing and recurrent tearing. Further, I will share important information you should know before booking surgery. *This post is evidence-based. I draw on the medical literature to share what you need to know about surgery and lichen sclerosus. Importantly, what I share is my interpretation of the science and data. Surgery for Clitoral Fusing If you read my post on architectural changes, you are familiar with the term clitoral…
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Does long-term use of topical steroids thin vulvar skin?

Does long-term use of topical steroids thin vulvar skin?

High-potency topical corticosteroids are the gold standard for treating Lichen Sclerosus (LS). But many people with LS worry about the effects of using this medication for an extended time. Will it eventually thin and damage the vulvar skin? To address this question, I talked with Dr. Jill Krapf. She’s a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Washington, DC. In 2021, Dr. Krapf co-wrote a review with Dr. Andrew Goldstein and Theodora Mautz that explored recommended dosing frequencies for topical steroids and how the medication affects the body.  “Even though there are studies that show that topical steroids work, there’s not a consensus on how to apply them, the best way to apply them, how long to apply them – all of the nitty gritty things,” explained Dr. Krapf.  Understanding more about topical steroids and how they are absorbed and delivered throughout the…
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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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