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. 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 virtual meetups. Kathy and I have been at it for a long time, with the first meetup in…
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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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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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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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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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