Lichen Sclerosus Podcast

This week I make my contribution to World Mental Health Day. I am super passionate about the aspect of mental health in Lichen Sclerosus. In this episode, we discuss what research has been done on Lichen Sclerosus and mental health as well as hear from some Lichen Sclerosus sisters and their thoughts on LS and mental health. If you need help with mental health please reach out. I'm always availabl...

Did you know you were supposed to check your vulva each month? Yep! But what exactly does that mean? What are we looking for? What do we do if something doesn't look right? In this episode, I share my first experience checking my vulva and provide you with step-by-step directions on how to check yours. First time I checked my vulva So here's the thing. I started this podcast. Being completely igno...

Is your train of thought, "I'm going to the doctor so they can tell me what's wrong and they can fix me."?  Yeah, mine used to be too. Until I started advocating for myself and made my doctor my partner in healthcare. This week I give you my three-stage plan on how to create that partnership. If you have any tips or tricks you use to advocate for yourself at the doctor's office please share them a...

Have you recently been diagnosed with Lichen Sclerosus or just started looking into it? If so this is the episode for you. Today we talk about causes, symptoms, treatments, and best practices. This is not a know-all be all, it is the basics to get you started down a path of wellness and acceptance. Don't forget to subscribe. IG - https://www.instagram.com/lichensclerosuspodcast/ Facebook - https:/...

Just wanted to let you know I was alive and what's going on. Mentioned in this episode: Finally Get Clear Answers About LS, Menopause, and Your Treatment If you’ve ever found yourself listening to this podcast searching for answers… trying to figure out why your body feels different… why your treatment isn’t working… or whether this is menopause, lichen sclerosus, or something else entirely… You’r...

This week I give you a health update and explain how I've been practicing giving myself grace. Chronic illness can create changes in our lives that we do not like but have to accept. This is where I find myself at the moment. I don't like it but I have to treat myself with care or I will make it worse. So this episode is the four tips I give in week 4 of my 5-week program "Get OK with LS". I hope...

Has LS taken over most of your waking thoughts? Does it have you questioning your womanhood or sex appeal? Has it made you feel less than? Then you need to listen to this episode. This week I speak with Dr. Anne Whitehouse who has developed a process to refocus our subconscious from our illness back onto the things that are truly important to us. Through daily practice, she has been able to work t...

This week I went off script and had a frank talk about what's been going on with me. It's so important to listen when your body is telling you to slow down or something is wrong. Hopefully, I will be back to full strength next week and we will be back to your regularly scheduled program. Don't' forget to follow me on social media so you can get notified of my live events. Facebook - https://www.fa...

Our sister in Lichen Sclerosus, Lou from Australia, shares her diagnosis story with us. Her trials with everything from doctors to mental health. Be prepared to smile and laugh because we had fun. And although our stories are individual to ourselves we share a lot of similarities. So share in the sisterhood of LS. Also, stay tuned to the end for an exciting announcement. Don't forget to subscribe...

This week we dive into support groups. Why you may need one? Why they are important and what to look for in the right support group for you? I'll also introduce you to two Facebook support group admins and let them tell you a bit about their groups. Links for groups as follows: Lichen Sclerosus Sclerosis UK Support Group For Women Facebook - https://www.facebook.com/groups/221930761513570/ Website...

Leia Mitchell and I are back with the second part of our conversation. This week we discuss clinical trial research around Lichen Sclerosus. Leia tells us where the research is on LS mental health as well as where she sees future research heading. We look at what makes a good trial and the risk we need to think about when looking to participate in a trial. So if you're interested in where the scie...

Hey. It's been a tough time lately and I can't be of service to you the way I want to so I will be taking some time off. I hope to be back reinvigorated. If you would like to keep in touch you can follow me on Instagram @lichensclerosuspodcast, email me at lichensclerosuspodcast@gmail.com, or join the Lichen Sclerosus Support Network where I will be the most active at https://members.lssupport.net...

This is the hardest episode I have ever recorded. It's raw and barely edited. It is needed. Please please please listen to this message. It is so important. After you listen tell me does using your voice really work?   kathy@lichensclerosuspodcast.com lichensclerosuspodcast.com/blm Mentioned in this episode: Finally Get Clear Answers About LS, Menopause, and Your Treatment If you’ve ever found you...

Ever wonder what's going on with Lichen Sclerosus today? With all the different perspectives and voices what does the science say? I speak with Leia Mitchell a clinical research coordinator, medical scribe, and clinical assistant working with some of the top names in the Lichen Sclerosus medical field. She lays out the findings of a recent clinical review, Vulvar Lichen Sclerosus: Current Perspect...

I recorded this on World Voice Day. I decided to use my voice to tell you my mission and hope you join me. Please listen all the way through because this is a very important message. I hope you join the fight and help me change the future of Lichen Sclerosus. You are not alone! The sooner we join together, the sooner we make a change. Thank you. Don't forget to follow Clare. https://www.instagram....

What would you do if your topical corticosteroid stopped working? I mean think about. Remember how it felt when you first noticed something was off with your vulva. The uncertainty that crossed your mind. Was this all in your head? How it felt every time you went to the doctor and they gave you a new diagnosis but the medications they gave didn’t work. The frustration and fear that you would never...

Just a quick warning, I will be talking about sexual things. If you are sensitive to that I completely understand but this may not be the blog for you. For complete show notes and links to resources visit the website. https://lssupportnetwork.org/how-to-have-better-sex-even-though-you-have-lichen-sclerosus/ Join our free international virtual meetups at https://lssupportnetwork.org/connect Mention...

Covid-19 aka coronavirus has turned our world upside down. So I went searching to see what people in the online communities were saying about it. Some had questions and concerns about our risk as Lichen Sclerosus patients. They asked questions like, does LS or our treatment make us susceptible to Covid-19? What makes you high risk? What’s the difference between autoimmune and immunosuppressive? So...

Does stress cause Lichen Sclerosus flareups? The effects of stress on LS have not been researched. However, my personal experience is that they are connected. Other women in public forums have also associated their Lichen Sclerosus flareups with their level of stress. In today’s hectic and scary environment it is important that we manage our stress and minimize our flareups. The changes implemente...

Lichen Sclerosus affects everyone differently. Each person can have a different variety of symptoms or no symptoms at all. This week I tell you about the common, severe and secondary symptoms I learned about in my research. I also discuss how some of them have affected me. Common Symptoms: Itching (mostly at night) Burning and soreness Fissures, nonhealing legions, and blood blisters Excessive swe...

Lichen Sclerosus is often misdiagnosed many times before it is finally correctly diagnosed and treated. This can lead to frustration, disappointment, and worsening symptoms. Unfortunately, this is what happened to Clare Baumhauer. After forty years of suffering, she was told she had developed vulval cancer due to Lichen Sclerosus. My story had many of Clare's twists and turns but fortunately, was...

February is Vulval Health Awareness Month, Vulvuary! In celebration, I give you some stats and introduce you to the Association for Lichen Sclerosus and Vulval Health (ALSVH). We take a look at the Lichen Sclerosus Manifesto as I interject many times (I'm sorry. I can't help it!) http://lichensclerosus.org/wp-content/uploads/2011/02/LICHEN-SCLEROSUS-MANIFESTO-PDF.pdf Mentioned in this episode: Fin...

Hi! My name is Kathy. I have been diagnosed with Lichen Sclerosus for two years but suffering much longer. I have minimal knowledge of the disease and I was okay with that. That was until about two weeks ago when I had the worst outbreak since I started my medication. I had no one to talk to or ask questions. I decided to find my community and learn as much as I could about this illness. So this i...