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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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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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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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 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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The Clitoris & Lichen Sclerosus: What You Need To Know

The Clitoris & Lichen Sclerosus: What You Need To Know

Introduction My last blog post looked at architectural changes and lichen sclerosus. This week, we dive even deeper into this topic. Specifically, I am discussing the clitoris, clitoral health, and what you can do if you have any of these clitoral problems as a component of your LS. If you missed last week’s post, you will want to go back and read that first as this post builds on that foundation.  This post is evidence-based; I draw on the medical literature to share what you need to know about clitoral health and lichen sclerosus. I will be sharing my personal journey later in the year. Quick Recap on Architectural Changes LS typically does not affect the vagina. Instead, it affects the skin of the vulva. All those parts that make up your vulva are a part of your anatomy, and that is what is meant by architecture. So what about…
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Architectural Changes & Lichen Sclerosus

Architectural Changes & Lichen Sclerosus

Introduction When I say architecture, what comes to mind? Many of us conjure up images of gothic cathedrals, the Doric or Ionic columns from Archaic and Classical Greek architecture, or perhaps a building you often pass by on your walks. Suffice it to say, you probably think about some building or other. What probably doesn’t pop into your mind is a vulva. Yet, when you begin to engage with the lichen sclerosus community and the LS literature, you may often hear folks referring to something called ‘architectural changes’. What on earth are architectural changes and what does that have to do with lichen sclerosus? Great questions! I am here to help answer them. It can be really overwhelming in the beginning to wrap your head around all of the medical jargon and terms out there, which is why I like to break down what each term means so you can be more…
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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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