Do You Need to Be on Estrogen if You Have Lichen Sclerosus?

Do You Need to Be on Estrogen if You Have Lichen Sclerosus?

Introduction Once you start going down the rabbit hole of Google, you’ll come across many different treatments and ways to manage your lichen sclerosus. One thing that may come up in your search is estrogen therapy. Conversely, you may have heard others talking about their using estrogen in virtual meetups or support groups. Regardless of where you heard about estrogen, you may be wondering if you need to be on estrogen if you have lichen sclerosus. And this is a good and important question, and we address it in today’s post. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus and estrogen. Importantly, what I share is my interpretation of the science and data. **The information contained in this blog post is up-to-date at the time of publication.  ***If this post is helpful to you, we’d love your…
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Lichen Sclerosus and Bacterial Vaginosis: What’s the Difference

Lichen Sclerosus and Bacterial Vaginosis: What’s the Difference

Introduction Misdiagnoses are, unfortunately, a common part of many of our journeys to getting a proper diagnosis. Some common misdiagnoses that people with lichen sclerosus get are yeast infections, herpes, menopause/GSM, psoriasis, and vitiligo. Part of our strategy in creating a world where folks with LS get diagnosed sooner involves raising awareness about LS and vulvar health in general. With that, today we are going to be discussing lichen sclerosus and bacterial vaginosis. In particular, we are going to be discussing the differences between the two in terms of signs, symptoms, diagnosis, and treatment. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus and bacterial vaginosis. Importantly, what I share is my interpretation of the science and data. **The information contained in this blog post is up-to-date at the time of publication.  ***If this post is helpful to…
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Do Steroids Cause Yeast Infections in People with Lichen Sclerosus

Do Steroids Cause Yeast Infections in People with Lichen Sclerosus

Introduction Our last post addressed the topic of why lichen sclerosus (LS) is commonly misdiagnosed as a yeast infection. This included general information about yeast infections, including what they are, risk factors, signs and symptoms, diagnosis, and treatment. Today’s post will dive deeper into lichen sclerosus and yeast infections. Particularly, we will address questions we frequently get asked from the LS community. These questions include “Do steroids cause yeast infections for people with LS?” and “What are my options if I experience recurrent, stubborn yeast with LS?” Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus as well as candidiasis (yeast infections). 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,…
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Yeast Infection or Lichen Sclerosus: Why So Many Misdiagnoses?

Yeast Infection or Lichen Sclerosus: Why So Many Misdiagnoses?

Introduction A common thread in lichen sclerosus diagnosis stories is multiple misdiagnoses. One of the most common misdiagnoses that folks with lichen sclerosus get is yeast infections. These misdiagnoses can lead to years of delayed diagnosis, which, consequently, can lead to the progression of LS and a worsening of symptoms. Therefore, knowing the differences between lichen sclerosus and yeast infections is important. This post is part educational and part to help build awareness so that healthcare providers will have an easier time determining if a patient has lichen sclerosus or a yeast infection (or both). This post discusses what a yeast infection is, its signs and symptoms, diagnosis, and treatment. I also share my thoughts on why I think LS is commonly misdiagnosed as lichen sclerosus. In our next blog post, I’ll dive deeper and discuss complicated and recurrent yeast infections, the connection between steroids and yeast infections, and what…
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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 and Vulvar Psoriasis

Vulvar Lichen Sclerosus and Vulvar Psoriasis

Introduction Misdiagnoses are, unfortunately, a common part of many of our journeys to getting a proper diagnosis. Some common misdiagnoses that people with lichen sclerosus get are yeast infections, herpes, menopause/GSM, psoriasis, and vitiligo. Part of our strategy in creating a world where folks with vulvar lichen sclerosus (VLS) get diagnosed sooner involves raising awareness about VLS and vulvar health in general. With that, today we will be discussing VLS and vulvar psoriasis. In particular, we will discuss the differences between the two regarding signs, symptoms, diagnosis, and treatment. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus as well as vulvar psoriasis. 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…
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Lichen Sclerosus and Borax

Lichen Sclerosus and Borax

Introduction If you’ve done any kind of search for lichen sclerosus, chances are you came across borax at one point. Whether in a Facebook group, a blog post, or a video, it’s likely you have come across borax. And here’s the thing: borax is incredibly controversial in the LS community. It’s a topic that comes up time and time again, and we at LSSN frequently get asked about borax, whether it’s in our virtual meetups, our membership, or via email. So, we’ve finally decided to address borax and share our stance. *This post was reviewed and approved by LSSN's medical advisory board. What is Borax? Borax is a naturally occurring mineral and salt of boric acid. Its names are 1) sodium tetraborate, 2) disodium tetraborate, or 3) sodium borate. Borax is obviously much easier to spell and pronounce, so many people will simply call it borax. The chemical formula for…
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Lichen Sclerosus or Vulvar Dermatitis

Lichen Sclerosus or Vulvar Dermatitis

Introduction Vular itch and pain. Many of us are all too familiar with one or both of these symptoms as people with lichen sclerosus. However, these are also common symptoms of other vulvar conditions, not just lichen sclerosus. So, you may be wondering, “OK, then how do I know if my itch or pain is happening from LS or something else?” Great question! You follow our educational blogs and videos to help you better understand the different vulvar conditions out there and what to do if you suspect you may have one. For example, we have blog posts on lichen sclerosus and lichen simplex chronicus, lichen sclerosus and lichen planus, and lichen sclerosus, menopause, and genitourary syndrome of menopause. Today, however, we will be discussing vulvar dermatitis and lichen sclerosus. We will review the signs and symptoms of lichen sclerosus and vulvar dermatitis. We will then review how each is…
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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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Non-Ablative Laser for Lichen Sclerosus

Non-Ablative Laser for Lichen Sclerosus

The Experimental Treatment Series Introduction In our last post, I discussed ablative laser therapy for lichen sclerosus. This looked at CO2 fractional lasers like the Mona Lisa laser at the ablative Yag laser. Today, I want to look at non-ablative laser therapy for lichen sclerosus. The truth is there are several different lasers on the market, each functioning a little differently and penetrating different skin depths.  As a refresher, laser therapy, be it ablative or non-ablative, is considered an experimental treatment. Experimental treatments show promise in managing a condition but have yet to be thoroughly evaluated for efficacy, safety, and acceptability.  We know our community has a lot of questions about laser therapy. I wouldn’t be doing our community justice if I looked at just one type of laser. If you read our last post on ablative laser therapy, you may be wondering, “OK, but what about non-ablative laser therapy…
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Welcome Back to Another Year of Vulvar Lichen Sclerosus Content

Welcome Back to Another Year of Vulvar Lichen Sclerosus Content

Introduction Alright, beautiful soul, it’s January 2nd, which marks the start of a new year. To kick off 2024 here at LSSN, I want to share some personal goals and hopes for the year, as well as some studies and clinical trials that are actively recruiting folks with vulvar lichen sclerosus (VLS) who want to get involved in LS research. I’ll also give you a sneak peek into some of the educational content we have planned for 2024. Personal Vulvar Lichen Sclerosus Goals for 2024 While I have been in remission for close to 4 years and had no symptoms during that time, there are still things I know I could be doing better to help my vulvar skin. Use my Emollients More Frequently First, emollient. 2023 was an incredibly busy year for me. For those who do not know, I have a full-time job, in addition to my work…
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LSSN End-of-Year Wrap-Up and Hope for the Future

LSSN End-of-Year Wrap-Up and Hope for the Future

Introduction I can’t believe I’m saying this, but 2023 is moving quickly towards a close. With that, we at LSSN wanted to do a little end-of-year reflection on this past year and offer some hope for the future. We will review some of the key events and milestones from LSSN, as well as exciting LS research that came out and what to look out for from us in 2024. If you're more of a visual person, enjoy this year-end review with our Executive director Kathy Ruiz-Carter. https://youtu.be/MejM6rg2gMc First Up, Some Gratitude First of all, we want to extend a tremendous and heartfelt thank you to our beautiful LS community. We appreciate all that you do to spread the word about us, telling your doctors about LSSN, liking and sharing our content, and donating. Kathy and I have the special honor of knowing many of you through the LSSN’s free bi-weekly…
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Lisa’s Lichen Sclerosus Pregnancy Journey

Lisa’s Lichen Sclerosus Pregnancy Journey

Introduction Many folks have questions about lichen sclerosus and pregnancy. We address the science behind lichen sclerosus and pregnancy here. However, we want to address this from a more lived experience perspective today. A while back, I opened a call on my Instagram page for folks who were willing to share their pregnancy and lichen sclerosus experience. Today, I’m sharing Lisa’s LS and pregnancy journey to help raise more awareness about LS and pregnancy. Lisa and I met for a virtual call to chat about her experience. What follows is my re-telling of her journey.  Lisa’s first pregnancy Lisa had had LS symptoms since she was a little girl. However, back then, the doctors were clueless as to why she was always itchy and uncomfortable. Consequently, she had to just kind of live with these symptoms.  By the time she got pregnant at 25, she was symptomatic but still did…
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Laser Therapy for Lichen Sclerosus: Experimental Treatment Series

Laser Therapy for Lichen Sclerosus: Experimental Treatment Series

Introduction Experimental treatments show promise in managing a condition but have not been thoroughly evaluated for efficacy, safety, and acceptability. Think of it like a non-approved treatment option; it may or may not work. In the context of lichen sclerosus, when discussing experimental treatment options, I mean interventions, medications, or procedures that have not yet shown to be fully effective as a treatment but show promise in helping with symptom management. In our last post, I discussed platelet-rich plasma as an experimental treatment for lichen sclerosus. Today, we continue the experimental treatment series by looking at laser therapy for lichen sclerosus. We often get questions about laser therapy for lichen sclerosus. For example, folks ask, "Someone on a forum mentioned they got laser therapy for lichen sclerosus; what is laser therapy anyway?" or "Is laser therapy an effective treatment for lichen sclerosus?". Another question I hear is, "Why has my…
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Platelet-Rich Plasma for Lichen Sclerosus: Experimental Treatment Series

Platelet-Rich Plasma for Lichen Sclerosus: Experimental Treatment Series

Introduction Experimental treatments show promise in managing a condition but have yet to be thoroughly evaluated for efficacy, safety, and acceptability. Think of it like a non-approved treatment option; it may or may not work. In the context of lichen sclerosus, when discussing experimental treatment options, I mean interventions, medications, or procedures that have not yet shown to be fully effective as a treatment but show promise in helping with symptom management. Some of these experimental treatments include platelet-rich plasma for vulvar lichen sclerosus, laser, and phototherapy. I often get asked about platelet-rich plasma for lichen sclerosus. For example, folks ask, “Someone on a forum mentioned platelet-rich plasma; what is this?” or “Is platelet-rich plasma an effective treatment for lichen sclerosus?”. In today’s post, I will take a deep dive into platelet-rich plasma by addressing what it is, what the procedure involves, and what the science says for vulvar lichen…
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Clothing and Lichen Sclerosus

Clothing and Lichen Sclerosus

Introduction Lichen sclerosus can impact many aspects of our lives. For example, it can influence our relationship with ourselves, our relationships with others, our mental health, our sexual health, and even our clothing. Yes, lichen sclerosus and clothing can be a big deal for many folks. While it may seem simple, clothing and lichen sclerosus can affect our mental health (in addition to exacerbating symptoms). I will do another blog on the mental health impact of clothing and LS in early 2024; stay tuned. For today's post, I take a more practical approach to clothing and lichen sclerosus by addressing the questions, "What clothing is recommended for lichen sclerosus," "What clothing should I wear in a flare," and "Will I ever be able to wear my old pants again"? *I have no affiliate links in this post. Any brand I mention is either just one I like or one I…
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LSSN Mini Summit on Vulvovaginal Conditions

LSSN Mini Summit on Vulvovaginal Conditions

https://www.youtube.com/watch?v=lLPT8xf6F7U As we all know, education is foundational to health. If we don’t know about our bodies and vulvovaginal conditions, it’s difficult to take care of them. LSSN exists to empower people with LS through evidence-based information and support. And this year, we’re bringing you even more opportunities to access information and experts in the field.  For the first time, LSSN is hosting a mini-summit! The LSSN Mini Summit: Vulvovaginal Conditions is a 3-day virtual event that will provide you with the information and support you need to take control of your vulvar health. It will take place Friday, September 29, through Sunday, October 1, 2023. You'll learn from leading experts about vulvovaginal conditions rarely discussed, including Lichen Sclerosus. Other conditions include: Hidradenitis Suppurativa Persistent Pelvic Nerve Pain Persistent Genital Arousal Disorder Genitourinary Syndrome of Menopause Lichen Simplex Chronicus Overactive Pelvic Floor Muscles. You'll also be able to connect with…
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Underwear and Lichen Sclerosus: What Kind is Best

Underwear and Lichen Sclerosus: What Kind is Best

Introduction Underwear and lichen sclerosus is a topic we get asked a lot about at Lichen Sclerosus Support Network. Folks have questions like: "What should I look for in underwear," "Are there certain kinds of underwear that aggravate lichen sclerosus symptoms" and "What is the best kind of underwear for lichen sclerosus?" These are lifestyle questions seldom addressed at the doctor's office, so today, we will chat about underwear and lichen sclerosus. In today's post, I will discuss how underwear can sometimes make lichen sclerosus worse, answer the question "What is the best type of underwear for lichen sclerosus," and then review different underwear options for you to explore.  *I have no affiliate links in this post. Any brand I mention is either just one I like or one I have heard others recommend. I get no commission if you purchase from any of these links. How Underwear Can *Sometimes*…
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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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A Look at Acceptance and Resilience. What Does It Mean?

A Look at Acceptance and Resilience. What Does It Mean?

Listen to the podcast here: Introduction And Excited Announcements Hey, and welcome! I’m so glad you are here to join a round table discussion about the concepts of acceptance and resilience we had live with some members of the LSSN membership. The concepts of acceptance and resilience are critical to living with a condition such as Lichen Sclerosus. In this discussion, I asked our participants a series of questions relating to these concepts and Lichen Sclerosus. If you want to join future discussions? Click the button below. Sign Up What is your definition of acceptance and resilience? What do those words mean to you, specifically concerning your Lichen Sclerosus? Jen: I think of the concept of acceptance as being able to admit that you have a condition/disease without simultaneously giving up/throwing in the towel. Acceptance for me means my Lichen Sclerosus is a part of me, but it is not…
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Lichen Planus or Lichen Sclerosus? Can You Have Both?

Lichen Planus or Lichen Sclerosus? Can You Have Both?

Introduction We have a series of posts looking at lichen sclerosus and other vulvovaginal conditions. For example, we have lichen sclerosus and menopause and lichen sclerosus, and lichen simplex chronicus. We do these posts to promote vulvovaginal education and because some folks have lichen sclerosus and other conditions. Further, many folks find the overlap of symptoms confusing and hard to navigate. In this post, we continue this series and will look at lichen planus and lichen sclerosus. If you are curious about the difference between lichen sclerosus and lichen planus, want to know what to look out for, and wonder if you can have both lichen sclerosus and lichen planus, this post is for you! *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen planus and lichen sclerosus. Importantly, what I share is my interpretation of the science and data.  Always…
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Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

Pelvic Floor Physical Therapy for Those with Lichen Sclerosus

The muscles at the base of your pelvic floor are like any other muscle in your body. They can weaken, hold tension and affect how your body works. Pelvic floor physical therapy can help those with Lichen Sclerosus keep their pelvic floor muscles healthy. That’s where experts like Ashley Stump, PFPT, come in. As a pelvic floor physical therapist, she helps people with various problems, including painful sex, urinary and bowel issues, pelvic pain, and pain from LS. I spoke with Ashley to learn more about what she does as pelvic floor PT and how it benefits those with LS. How does Lichen Sclerosus affect your pelvic floor muscles? If you have LS, you already know the condition affects various parts of your life. It also involves multiple parts of your body, including your pelvic floor.  Just like people can hold tension in their neck muscles, they can also have…
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Lichen Sclerosus & Menopause: What’s the Difference?

Lichen Sclerosus & Menopause: What’s the Difference?

Introduction A common question we hear at Lichen Sclerosus Support Network is, “What is menopause/genitourinary syndrome of menopause (aka GSM), and how do I know if that is causing my symptoms or changes to my vulva or if it’s lichen sclerosus? And this is an important question.  Unfortunately, most conditions that affect the vulva have overlapping symptoms. For example, if you Google “symptoms of GSM,” “symptoms of lichen simplex chronicus,” “symptoms of yeast (candidiasis),” etc., they will all come back with itch and pain as primary symptoms. In this post, I will discuss what menopause is, what GSM is, and the changes that can occur to the vulva from GSM. I will highlight some differences between GSM and lichen sclerosus  *This post is evidence-based; I draw on the medical literature to share what you need to know about menopause, genitourinary syndrome of menopause, and lichen sclerosus. Importantly, what I share is…
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Kintsugi: How I Learned to Love my Vulva Again

Kintsugi: How I Learned to Love my Vulva Again

Introduction Lichen sclerosus can cause architectural changes. I explain what this means in detail here, but briefly, architectural changes are changes that occur to the vulva that physically change the way it looks. For example, some folks lose some or all of their labia minora. These changes can cause a lot of distress. You may feel like part of your identity has been removed. You may feel less 'feminine' than you did before the changes. Some folks (myself included) feel broken because of how our vulvas look. If this resonates with you, you are not alone. In today's post, we are stepping away from evidence-based information and science to have a heartfelt post about architectural changes and a beautiful philosophy and art - Kintsugi - that helped me move from feeling broken and ugly to feeling beautiful and worthy.  I hope it creates a healing and transformative shift in you, as it did…
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What’s the best lube for Lichen Sclerosus?

What’s the best lube for Lichen Sclerosus?

https://youtu.be/P9edyDq6Ue0 Have you ever wondered what lube is best for Lichen Sclerosus? Perhaps you felt overwhelmed by the massive selection of lube options online and had no clue what to buy? Have you ever wondered what you should look for and avoid in a lube? If yes, this is the episode for you! Today I am here with my amazing friend and fellow LS warrior, Jaclyn, from The Lost Labia Chronicles, and we are going to be talking about lubrication, artificial lubrication, that is. But before we jump into this, click here to subscribe to The Lost Labia Chronicles, which dives into sex, mental health, and Lichen Sclerosus. I am so happy to be here with my girl to talk with y’all about lube (what kind of lube is right for you, Jaclyn’s experience with dilators and lube, what you want to consider in choosing a lube, etc.). Types of…
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Lichen Sclerosus and Pregnancy

Lichen Sclerosus and Pregnancy

Introduction In this post, I share what the science says about lichen sclerosus and pregnancy. Specifically, I look at treatment during pregnancy, risks and benefits of treating during pregnancy, and delivery. *This post is evidence-based; I draw on the medical literature to share what you need to know about pregnancy and lichen sclerosus. Importantly, what I share is my interpretation of the science and data. A Note on the Science of Lichen Sclerosus and Pregnancy We are all about transparency here at Lichen Sclerosus Support Network. What does that mean? That means we are always as honest as possible about the information and guidance we provide to our LS community. Thus, in the spirit of transparency, I want to note that there is not much research on lichen sclerosus and pregnancy. Of the few studies available, many are case studies (which are less robust than randomized controlled trials (RCTs)). Further,…
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Take Part In The Revolutionary GRIDD Study Today

Take Part In The Revolutionary GRIDD Study Today

As a lichen sclerosus patient, you are invited to participate in ground-breaking research that is being conducted by the International Alliance for Dermatology Patient Organizations (also known as GlobalSkin) in collaboration with researchers at Cardiff University (UK) and University Medical Centre Hamburg-Eppendorf (Germany). The Global Research on the Impact of Dermatological Diseases (GRIDD) project aims to collect global data on the impact of dermatological conditions on patients’ lives. To collect this impact data, we have developed the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure, a scientifically sound questionnaire capable of measuring the impact of conditions of the skin, hair, nails, and mucosa from the patient’s perspective. As a Member of GlobalSkin, Lichen Scleorsus Support Network is supportive of this important project. You are the expert, and your opinion matters! By participating, you will be helping to show clinicians, researchers, and policymakers the true impact of living with your dermatological…
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Lichen Simplex Chronicus and LS: What’s the Difference?

Lichen Simplex Chronicus and LS: What’s the Difference?

Introduction Have you heard of lichen simplex chronicus before? You may have encountered the term while searching your symptoms on Google and trying to get a diagnosis. Perhaps you heard the term while watching a webinar on vulvovaginal health. Maybe you have a lichen simplex chronicus diagnosis, or your doctor thinks you *may* have this condition. Regardless, it is essential to have a basic understanding of what lichen simplex chronicus is in order to better advocate for yourself. Further - and this is a spoiler alert - you can have both lichen sclerosus and lichen simplex chronicus. In this post, I share what lichen simplex chronicus is, the main signs and symptoms, and how it is treated. I also address a common question in support groups, "can I have both lichen sclerosus and lichen simplex chronicus"? *This post is evidence-based; I draw on the medical literature to share what you…
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LS Zine Giving Voice to Patients Around the World

LS Zine Giving Voice to Patients Around the World

By Gina At this year’s (W)holistic Healing Summit, the Lichen Sclerosus Support Network released its first LS Zine! The zine gives voice to LS patients through art, poetry, interviews, and storytelling. It’s a creative, intimate look at Lichen Sclerosus through the eyes of people who live with it every day. I am honored to be one of the individuals featured in the LS Zine. Contributing two poems and being interviewed by a member of the project team reminded me of the importance of art and storytelling as a part of healing. The Importance of Sharing Our LS Stories Since being diagnosed in 2020 with Lichen Sclerosus, I’ve struggled with being able to put my experience into words.  Because LS isn’t widely known, I’ve spent a lot of time researching it and explaining it. I’ve read medical articles, listened to webinars, and tracked symptoms. I’ve shared the information I’ve learned with…
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Chronic Pain and Lichen Sclerosus: What is Going On?

Chronic Pain and Lichen Sclerosus: What is Going On?

Introduction In my last post, we discussed the basics of pain with lichen sclerosus. I highlighted the main types of pain you may experience with lichen sclerosus and how to manage it. Read the post here. In today’s post, we are going to take a deeper dive into pain from lichen sclerosus by approaching the subject from a more evidence-based perspective. Further, we are going to discuss chronic and complex pain from lichen sclerosus and what you can do about it. The Basics of Pain Pain is defined by the International Association for the study of pain as “An unpleasant sensory or emotional experience associated with actual or potential tissue damage” - Saurab Sharma, 2020 (link) Pain is a personal experience. It is unique to each person. For example, two people with the same injury could experience pain in very different ways (ibid).  Pain is an unpleasant experience that is…
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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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How I Successfully Overcame the Fear of Performing My Vulva Check

How I Successfully Overcame the Fear of Performing My Vulva Check

Whether or not you have Lichen Sclerosus, checking your vulva on a regular basis is an important part of your health. Anyone with a vulva should do a self-exam once a month, just like everyone with breasts should do a monthly breast self-exam. Because vulva checks aren’t talked about much, it may seem weird to do one. And, if you have Lichen Sclerosus, you may be nervous about the kind of changes you may see. Know that with the right education and practice, it can become a routine part of your health that you’ll get more comfortable with. In this blog, I’ll share with you my first experience doing a vulva check and how you can do one on your own. Plus, I’ll connect you to some helpful LSSN resources to make your experience easier. Preparing for My First Vulva Check When I was first diagnosed with Lichen Sclerosus, I…
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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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How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

How to Apply Topical Steroid Treatment for Lichen Sclerosus Correctly

If you’ve been diagnosed with Lichen Sclerosus, there’s a good chance you’ve been given a prescription for a steroids. That’s because high-potency topical corticosteroids are the gold standard treatment for Lichen Sclerosus. Unfortunately, the prescription doesn’t usually come with an explanation of what it does or how to use it. This leads to a lot of confusion, questions, and misconceptions about the safety and effectiveness of steroids for LS.  That’s where my guest, Dr. Jill Krapf, comes in! Dr. Krapf is a researcher and Lichen Sclerosus specialist who works with The Centers for Vulvovaginal Disorders in Tampa, FL. She’s an invaluable resource for those living with LS and helps them understand the condition and treatment. In this blog, we talk about how topical steroids help treat Lichen Sclerosus and how to use them properly. Why are topical steroids used as a treatment for Lichen Sclerosus? Before we talk about how…
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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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She Reversed Severe Clitoral Adhesions Without Surgery

She Reversed Severe Clitoral Adhesions Without Surgery

In this blog, I’ll share information about clitoral fusing and introduce you to a fantastic woman. This warrior was able to reverse her severe clitoral adhesions without a medical procedure. And she did it within a few months.  One of the most common questions I get when people are first diagnosed with Lichen Sclerosus is: What will this do to my body? The next question is: Can I do anything about it? Unfortunately, having Lichen Sclerosus (LS) puts you at risk for vulvar changes, including fusing/scarring.  But here’s the good news: Surgery isn’t the only option for treatment. Of course, everyone’s LS journey is different, and what works for one person may not work for another. But knowing all of your options can help you decide what’s best for you and give you conservative measures to try before opting for surgery.  Let’s learn a little more about clitoral fusing/scarring. What…
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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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Can Constipation and Urinary Incontinence be Relieved with Pelvic Physical Therapy?

Can Constipation and Urinary Incontinence be Relieved with Pelvic Physical Therapy?

Lichen sclerosus (LS) may be a skin condition, but it affects much more than our skin. Even after you’ve managed LS symptoms like skin plaques and itching, the effects of the condition can show up in other areas of your body. Based on some research I did with LSSN members, people with lichen sclerosus often deal with other issues like constipation, urinary incontinence, fibromyalgia, and TMJ disorder at higher rates. I spoke with Holly Horikawa, a pelvic physical therapist, to learn more about why constipation and urinary incontinence are common among those with LS. If you'd like to see the full interview with Holly, join the LSSN Membership to get access to the replay and more. Why do people with LS have pelvic floor issues? “Skin doesn’t exist separately from the internal organs, from our nervous system, or our vascular system. Everything is connected,” Holly explained.  If you have pelvic…
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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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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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