Help! I Can’t Feel My Clitoris. Now What?

Help! I Can’t Feel My Clitoris. Now What?

Introduction "Help! I can't feel my clitoris!". Have you ever experienced this, plugged the statement into Google looking for hope and answers, only to come up short? We feel you! That's why today's post is exclusively dedicated to this topic. *This post is evidence-based; I draw on the medical literature to share what you need to know about vulvar lichen sclerosus and clitoral sensation. Importantly, what I share is my interpretation of the science and data. **If you found this post helpful, we’d love your support to continue providing important education like this. Make a donation today, volunteer with us, or share our posts in your support groups. What is the Clitoris OK, first and foremost, because we address, "I can't feel my clitoris--help!", we need to talk about what the clitoris is. The clitoris is a small, highly sensitive organ located at the top of the vulva (see the…
Read More
Missed Opportunities and Vulvar Lichen Sclerosus

Missed Opportunities and Vulvar Lichen Sclerosus

Introduction In today's video, Dr. Sophie Rees and I discuss her research on missed opportunities and vulvar lichen sclerosus, focusing on instances where healthcare providers missed opportunities for better care in diagnosing VLS. Sophie Rees is a medical sociologist and applied health researcher whose main research interests are vulval disease, especially LS, based at the University of Bristol in the UK. She was Chief Investigator of a mixed methods study called ‘Living with Lichen Sclerosus’ that explored the experience of people with LS using interviews, focus groups, and a survey. She produced a short film based on the interview findings, which is aimed at healthcare professionals to help them understand what it is like to live with LS. Follow Dr. Rees on Instagram and Twitter as @drsophierees Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you,…
Read More
Does Stress Cause Vulvar Lichen Sclerosus?

Does Stress Cause Vulvar Lichen Sclerosus?

Introduction A common experience in processing a vulvar lichen sclerosus (VLS) diagnosis is understanding what happened. “What went wrong?”, “Why did this happen to me?” and “What caused this?” are common questions we here in our community. I know I (Jaclyn) have definitely gone down the ‘cause’ rabbit hole, trying to figure out just what exactly happened to my body to result in VLS. Today, we will discuss a topic that most people can relate to–stress. Specifically, we will address the question, “Does stress cause vulvar lichen sclerosus?” as this is one of the top questions we hear during our virtual meetups, Instagram DMs, and emails. First, we discuss what stress is and then address whether stress causes VLS. Second, we address the flip side of this question, “Can VLS cause stress?”. Finally, we share different ways to help manage stress and develop greater stress resilience. *This post is evidence-based;…
Read More
Managing Vulvar Fissures from Vulvar Lichen Sclerosus

Managing Vulvar Fissures from Vulvar Lichen Sclerosus

Introduction In our last post, I (Jaclyn) shared my experience with vulvar lichen sclerosus and fissures. In today’s post, we will dive deeper into the nature of fissures, why they happen with vulvar lichen sclerosus, and recommendations on healing and treating them. *This post is evidence-based; I draw on the medical literature to share what you need to know about vulvar lichen sclerosus and fissures. Importantly, what I share is my interpretation of the science and data. **If you found this post helpful, we’d love your support in continuing to provide important education like this. Make a donation today, volunteer with us, or share our posts in your support groups. Vulvar Fissures in General First of all, anyone can get vulvar fissures–they aren’t exclusive to people with vulvar lichen sclerosus. Many things can cause them, which we will highlight below. So, let’s review the basics of fissures first and dive…
Read More
Vulvar Lichen Sclerosus and Fissures

Vulvar Lichen Sclerosus and Fissures

Introduction Today is part one of our 2024 series on vulvar lichen sclerosus (VLS) and fissures. Before diving into the science of VLS and fissures, though, I wanted to share a more personal post about my experience with fissures. This is a very vulnerable share, but I hope I can raise more awareness and help others by putting myself out there. My Long-Term Relationship with Fissures Fissures and I have been in a long-term, complicated relationship ever since I was 20. They first made their appearance after I had sex. Mid-sex, I remember feeling like I tore or something. I was confused. After, when I peed, I remember it stinging. At first, it would only happen sometimes. Sometimes, I would have sex and be fine; other times, I would have sex, and I’d end up with a fissure. However, as the years went on, my fissures became more of a…
Read More
Lichen Sclerosus and Constipation

Lichen Sclerosus and Constipation

Introduction In today's video, we are joined by Dr. Mukta Chauhan to discuss a common (but often not talked about) symptom of vulvar lichen sclerosus (VLS)--constipation. We discuss what constipation is, how it involves the pelvic floor, managing constipation with VLS, gut motility, lifestyle tips and so much more. If you struggle with vulvar lichen sclerosus and constipation, this is the video for you! Keep on scrolling to watch now! *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. **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. https://www.youtube.com/watch?v=i8eSk1SPYvM Dr. Chauhan's Bio Mukta is double board-certified in orthopedics and pelvic health. She is a tremendous resource for all things…
Read More
New Research on Pregnancy and Vulvar Lichen Sclerosus

New Research on Pregnancy and Vulvar Lichen Sclerosus

Introduction For some time, the medical community believed that vulvar lichen sclerosus (VLS) primarily affected children and post-menopausal people. This meant younger adults were often left out of VLS conversations and research. Thanks to recent advances in VLS research and loud advocates for the VLS community, we now know people of all ages can be affected by VLS. At LSSN, we noticed a trend amongst newly diagnosed younger adults–a worry about pregnancy and vulvar lichen sclerosus. And we get it: a VLS diagnosis can be scary if you are pregnant or thinking about getting pregnant, especially since there is not a lot of research and information on this topic. We published two blog posts to help raise awareness about pregnancy and vulvar lichen sclerosus and to help bring more information on this topic to our community. One reviewed what the science said about pregnancy and VLS; another was a post…
Read More
Does Vulvar Lichen Sclerosus Affect the Bladder?

Does Vulvar Lichen Sclerosus Affect the Bladder?

Introduction Getting a vulvar lichen sclerosus (VLS) diagnosis can be hard. It can feel both validating and terrifying. After a diagnosis, opening up your laptop and getting to Googling is not uncommon. Perhaps you join an online support group to help you learn more. However, amidst all this learning, you start to wonder about VLS and its connection to other symptoms you experience. For example, some folks want to know if there's a connection between VLS and various autoimmune conditions. Others want to know if VLS can affect your gastrointestinal tract. Another common connection-based question we hear and see a lot is, "Does vulvar lichen sclerosus affect the bladder?". If you've ever wondered about that, this is the post for you! We address this question and share what you need to know on the topic of bladder health and VLS. *This post is evidence-based; I draw on the medical literature…
Read More
Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

Anti-Fat Bias, Misdiagnoses, and Vulvar Lichen Sclerosus

Introduction Content Warning: anti-fatness, anti-fat bias, weight loss, medical abuse, and medical neglect.   Misdiagnoses are common in the vulvar lichen sclerosus (VLS) community. Many of us, myself included, endured years of pain and suffering, only for healthcare providers to dismiss us. Many factors contribute to misdiagnosis. For example, a lack of provider education about vulvar lichen sclerosus can lead to misdiagnoses; lack of awareness may be another factor. Those two points get a lot of attention when it comes to misdiagnosis. However, something that gets less attention is discriminatory factors that can lead to misdiagnoses. Today, we have the honor of featuring a guest post by Chris Barbieri on the topic of anti-fat bias, misdiagnosis, and vulvar lichen sclerosus. Anti-fat bias is a form of discrimination that involves prejudiced attitudes against someone's body size or weight. Chris is one of Jaclyn's oldest and dearest friends. She is a brilliant human…
Read More
How to Treat and Manage a Vulvar Lichen Sclerosus Flare

How to Treat and Manage a Vulvar Lichen Sclerosus Flare

Introduction For today’s video, we are going to discuss how to treat a vulvar lichen sclerosus (VLS) flare, according to Dihn et al. (2016). I also highlight what I (Jaclyn) do when I'm in a flare and what others in the VLS community have found helpful. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=ufIzSyr8jg0 Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to work with me (Jaclyn)? I offer 1:1 lichen sclerosus peer support calls. Learn more and book a call here. Sign up for LSSN's FREE virtual…
Read More
Does Trauma cause Lichen Sclerosus?

Does Trauma cause Lichen Sclerosus?

Introduction A lichen sclerosus diagnosis can be a heavy thing to process. It can bring up a lot of negative emotions, thoughts, and feelings, such as anger, frustration, fear, and more. As folks process their diagnosis, some begin to wonder what caused their LS. In fact, we frequently hear folks express wanting to know what caused this or share their theories on what caused it. Some of those theories involve past trauma as the causal factor behind LS. Today, we will be addressing the question of whether lichen sclerosus is caused by trauma. If this does not feel supportive to you, please feel free to skip this blog and return to it at a time that feels right and safe for you. Disclaimers *This post is evidence-based; I draw on the medical literature to share what you need to know about lichen sclerosus and trauma. Importantly, what I share is…
Read More
Do you Need a Compounding Pharmacy for Lichen Sclerosus?

Do you Need a Compounding Pharmacy for Lichen Sclerosus?

Introduction Today, we will address a question we frequently get via email and at LSSN’s virtual meetups. That is, do you need a compounding pharmacy for lichen sclerosus? Some of you may already be familiar with compounding pharmacies and the concept of compounding medications. Others may be hearing this for the first time. Either way, this conversation usually spikes a lot of intrigue and curiosity about whether or not you need one. In this post, we will address: What is a compounding pharmacy What kind of medications are offered at compounding pharmacies Benefits of compounding pharmacies Cons of compounding pharmacies Do you need a compounding pharmacy for lichen sclerosus When should you consider a compounding pharmacy for lichen sclerosus and, Important notes about compounding medications Disclaimers *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,…
Read More
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…
Read More
What is a Vulvar Lichen Sclerosus Flare Up?

What is a Vulvar Lichen Sclerosus Flare Up?

Introduction For today’s video, we are going to chat about flares and vulvar lichen sclerosus (VLS). Specifically, we define what a VLS flare is and provide examples. We also discuss different things that can trigger a flare. In our next video, we will talk about the treatment and management of VLS flares. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=zw2bDDOojrw Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to work with me (Jaclyn)? I offer 1:1 lichen sclerosus peer support calls. Learn more and book a call here.…
Read More
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…
Read More
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,…
Read More
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…
Read More
How to Get Vulvar Lichen Sclerosus into Remission

How to Get Vulvar Lichen Sclerosus into Remission

Introduction For today’s video, we are going to chat about remission and vulvar lichen sclerosus (VLS). Specifically, we are going to talk about how to get vulvar lichen sclerosus into remission. We share what the science says on this topic, as well as other adjunct therapies and add-ons that can help you achieve remission. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=W5ZgPQKnQDU Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to work with me (Jaclyn)? I offer 1:1 lichen sclerosus peer support calls. Learn more and book a…
Read More
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…
Read More
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…
Read More
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…
Read More
Remission and Vulvar Lichen Sclerosus

Remission and Vulvar Lichen Sclerosus

Introduction For today’s video, we are going to chat about remission and vulvar lichen sclerosus (VLS). Specifically, we define what clinical remission with VLS means, how it is diagnosed, and whether you can still have symptoms in remission. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=4gPINe2d9mc Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to work with me (Jaclyn)? I offer 1:1 lichen sclerosus peer support calls. Learn more and book a call here. Sign up for LSSN's FREE virtual support meetups Subscribe to LSSN's newsletter here Subscribe…
Read More
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…
Read More
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…
Read More
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…
Read More
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.…
Read More
Vulvar Lichen Sclerosus in Darker Skin Types

Vulvar Lichen Sclerosus in Darker Skin Types

Introduction In today's video, we are joined by Dr. Akinshemoyin Vaughn to discuss vulvar lichen sclerosus (VLS) in darker skin types. We talk about misdiagnoses, how VLS presents in folks of darker skin types, and how lichen simplex chronicus and erosive lichen planus present in folks of darker skin types. We chat about so much, including cultural and ethnic backgrounds and how they influence diagnosis, treatment, and management, taboo & stigma in certain communities, and so much more. Be sure to like this video and subscribe to our channel for more educational LS content. Disclaimer This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Importantly, what I share is my interpretation of the science. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a…
Read More
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…
Read More
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…
Read More
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…
Read More
Non-Ablative Laser for Lichen Sclerosus

Non-Ablative Laser for Lichen Sclerosus

Introduction In our last video, I discussed ablative laser and addressed the question of whether it was an effective treatment for lichen sclerosus. I noted, in that video, that there are different types of laser, so, for today's video, we are going to look at non-ablative laser for lichen sclerosus and whether they are an effective treatment option for LS. Be sure to like this video and subscribe to our channel for more educational LS content. Disclaimer This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Importantly what I share is my interpretation of the science. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. https://www.youtube.com/watch?v=noTt0b1imCo Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to…
Read More
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…
Read More
Ablative Laser for Lichen Sclerosus: Is It an Effective Treatment?

Ablative Laser for Lichen Sclerosus: Is It an Effective Treatment?

Introduction For today’s video, I am going to be discussing laser therapy for lichen sclerosus. Specifically, I'm going to look at an ablative laser for lichen sclerosus. In our next video, I will review non-ablative lasers for lichen sclerosus, because there are different types of lasers, and they do not all work the same. In this video, I explain what ablative laser therapy is, how it works, what to expect, how to prepare, cost, and frequency. Finally, I share what the science says about ablative laser and whether it is an effective treatment for lichen sclerosus. Disclaimer This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Importantly what I share is my interpretation of the science. If this video was helpful to you, we’d love your support so we can continue providing important education like this.…
Read More
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…
Read More
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…
Read More
10 Tips for Managing Itch with Lichen Sclerosus

10 Tips for Managing Itch with Lichen Sclerosus

Introduction Not everyone has itch as a symptom of lichen sclerosus. However, if it is a symptom of yours, you know how absolutely miserable this can be. For today’s video, I share 10 tips for managing itch with lichen sclerosus. Let us know in the comments what your favorite tips are. To be transparent, this post is not evidence-based. Instead, the tips I share are either tips that work for me or tips I have heard from others. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. https://www.youtube.com/watch?v=O1MPYMTGg6g Important Links Get my FREE eBook on vulvar lichen sclerosus here Want to work with me (Jaclyn)? I offer 1:1 lichen sclerosus peer support calls. Learn more and book a…
Read More
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…
Read More
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…
Read More
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*…
Read More
Lichen Sclerosus and Hair Removal: Which Method is Best?

Lichen Sclerosus and Hair Removal: Which Method is Best?

Introduction Lichen scleorsus and hair removal is a hot topic in our community. Many folks have questions about if they should remove their hair, and, if so, what are LS-friendly ways to remove hair. We got you covered! In today's video, I share my story of what worked and what didn't work for me. I share some of the better ways to remove hair if you have lichen sclerosus and share some really important caveats about hair removal with LS. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate." https://www.youtube.com/watch?v=wII__nykpT8&t=177s Disclaimer This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Important Links from…
Read More
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…
Read More
Sexual Health Resources for Lichen Sclerosus

Sexual Health Resources for Lichen Sclerosus

Introduction For today’s video, we are going to chat about sexual health resources for lichen sclerosus. I begin by reviewing what a sex therapist is and how to find and vet a sex therapist. After, I highlight a number of different sexual health resources for lichen sclerosus as not everyone is able to work with a sex therapist. Such resources include educational podcasts, key figures to follow on social media, books and practices, and events and workshops. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. https://www.youtube.com/watch?v=XCThBj6-ggo Free Vetting a Potential Sex Therapist…
Read More
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…
Read More
How Sex Therapy can Help with Lichen Sclerosus

How Sex Therapy can Help with Lichen Sclerosus

Introduction For today’s video, I share my journey with lichen sclerosus and sexual health. Specifically, I discuss how my sexual health was impacted by lichen sclerosus. I share what prompted me to find a sexy therapist and how sex therapy can help with lichen sclerosus. This video is very personal and vulnerable. In our next video, we will approach this topic from a more practical lens by sharing how to find a sex therapist. There will also be free and paid sexual health resources discussed in that video as well. Be sure to like this video and subscribe to our channel for more educational LS content. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. If this video was helpful to you, we’d love your support so we can continue providing important education like this.…
Read More
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…
Read More
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…
Read More
Low Libido and Lichen Sclerosus: Can You Get It Back?

Low Libido and Lichen Sclerosus: Can You Get It Back?

For today’s video, I am joined by the brilliant Dr. Lori Brotto to discuss all things low libido and lichen sclerosus. We chat about what libido is, different categories of libido, lichen sclerosus, and libido, and different ways to work on increasing libido with lichen sclerosus. *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Be sure to like this video and subscribe to our channel for more educational LS content. If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today. If you need more support, join our FREE virtual LS support meetups here. https://www.youtube.com/watch?v=g4sB8sbe_xk Dr. Lori Brotto's Bio & Main Links Dr. Lori Brotto is a Professor in the UBC Department of Obstetrics and Gynaecology, where she holds a Canada…
Read More
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…
Read More
What’s the Deal with Hormones and Lichen Sclerosus?

What’s the Deal with Hormones and Lichen Sclerosus?

Introduction For today’s video, I am joined by the brilliant Dr. Corey Babb to answer some of your on-demand questions about lichen sclerosus and hormones. We talk about whether there is a hormonal component to lichen sclerosus, why some folks flare around their periods (and what to do if that happens), what's the deal with estrogen, and more! *Disclaimer: This video is for educational and entertainment purposes only. Please consult with your medical provider before making any changes to your health plan. Be sure to like this video and subscribe to our channel for more educational LS content. https://www.youtube.com/watch?v=o5gTLNL9LNU If this video was helpful to you, we’d love your support so we can continue providing important education like this. Make a donation today at https://lssupportnetwork.org/donate Important Links Dr. Babb's website North American Menopause Society website Follow Dr. Babb on Instagram and TikTok @dr.coreybabb Dr. Babb's YouTube Channel The AZIZA Project…
Read More
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…
Read More