Lichen Sclerosus Podcast

This week four Lichen Sclerosus Warriors share their diagnosis stories with us. Although each of their stories is individualized they all have similarities to our own.

LS can be such a lonely disease but by sharing our stories we realize there are thousands of women feeling and going through what we are going through.

I hope you feel a little less alone today after listening to this episode.

Don't forget to signup for the Lichen Sclerosus Podcast Virtual Meetup - https://lichensclerosuspodcast.com/connect/

Other episodes mentioned:

The Mental Side of Lichen Sclerosus - https://lichensclerosuspodcast.com/the-mental-health-side-of-lichen-sclerosus/

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…

Have you ever thought about how LS will or has affected your relationship? How it has or will affect your partner?

This week I was inspired by a DM I received on Instagram from a young man looking to support his companion. The love and care he expressed sent me looking for actionable tips for how we can maintain healthy happy relationships despite LS.

Listen to find out how we can support each other in our relationship, how our partners can support us, and how we support our partners.

So grab your partner. Sit down and listen together. This episode is guaranteed to spark conversations.

Let me know which was your favorite tip. What came out of it for your relationship?

Reach me on IG @lichenscperosuspodcast, FB @lichensclerosussupportnetwork, or email me at [email protected].

Don't forget to signup for the first LSP Virtual Meetup on November 14, 2020. Go to https://www.subscribepage.com/lsconnect

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…

Do you have the itch?

You know the one I'm talking about. The one that makes your vulva feel like ants are crawling all over it. That unforgiving desire to scratch.

Yeah, that one.

This week we discuss why we itch when we do and I give you seven ways ladies combat the itch.

As always don't forget to subscribe and share.

Follow me on Instagram @lichensclerosuspodcast and on FB @lichensclerosussupportnetwork.

Full show notes at lichensclerosuspodcast.com/vulvaritch

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…

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 available even if it's just to talk. I shared lots of resources in this episode so please don't suffer in silence.

Website - lichensclerosuspodcast.com/mentalhealth IG - @lichensclerosuspodcast FB - https://www.facebook.com/lichensclerosussupportnetwork

Resources:

Psychological and psychiatric morbidity in lichen sclerosus in a cohort recruited from a genitourinary medicine clinic - https://pubmed.ncbi.nlm.nih.gov/19917638/

Vulvar lichen sclerosus et atrophicus - https://www.jmidlifehealth.org/article.asp?issn=0976-7800;year=2017;volume=8;issue=2;spage=55;epage=62;aulast=Nair

My Vulva Burned Like It Was On Fire, Then I Got A Diagnosis That Changed My Life - https://www.refinery29.com/en-gb/2019/01/221855/vulva-disease-lichen-sclerosus-cancer

Dr. Sanaza’s website - https://www.alchemyoftrauma.com/

Dr. Sanaza on Instagram @dr.yaghmai

Previous episodes referenced in this episode:

Lou's Lichen Scleorsus Diagnosis Story - https://lichensclerosuspodcast.com/lou

My Diagnosis Story: Dr. Sanaz Yaghmai - https://lichensclerosuspodcast.com/my-diagnosis-story-dr-sanaz-yaghmai/

Lichen Sclerosus Symptoms - https://lichensclerosuspodcast.com/symptoms

Do you need a support group? - https://lichensclerosuspodcast.com/supportgroup

Emma Norman and Clair Baumhaur’s Accounts

Facebook - https://www.facebook.com/groups/221930761513570/

Website - https://lsvcukawareness.weebly.com/

Twitter - https://twitter.com/LSclerosus & https://twitter.com/Vulvalcanceruk

Instagram - https://www.instagram.com/lichensclerosusuk/ & https://www.instagram.com/vulvalcancerukawareness/

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…

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.

So here's the thing. I started this podcast. Being completely ignorant of the practical knowledge needed to be known with Lichen Sclerosus.

I didn't know I was supposed to be checking my vulva until I started going on Instagram and following some wonderful accounts that gave me so much information.

So I started seeing posts saying, "It's time of the month to check your vulva." And I'm like, "Okay. I'm supposed to check my vulva. Oh, okay. I didn't know that my doctor didn't tell me that."

I can be really bad at taking care of myself and weeks went by without me checking before I saw another post telling me to check my vulva. Then a whole month past and the original account posted again to check my vulva.

Now I'm like, okay, am I stalling or what is going on? So I had to really think about it. Why am I not just doing it? It's not that I'm prudish. I've touched myself before. I've looked when there was something that didn't feel right. So what was the deal?

I realized I was scared. I was petrified of what I might see because by this time I've started feeling changes to my anatomy. I've seen the pictures all over Google. I've seen the white spots. I've seen the lesions. I've seen the blisters.

My first blister in 2018 freaked me out and sent me to the doctor. I didn't want to see that again. That scared the crap out of me. Subconsciously I was stalling because I was scared.

Once I came to the realization I was scared, I set a date to check my vulva.

Can I tell you? As the day got closer I was getting more nervous. I was anxious and had butterflies in my stomach. I felt ridiculous and dumb but I couldn't help it.

So the day comes and I go about my day. I have multiple opportunities where I can do it, but I want to wait until everybody goes to sleep. I'm like, okay, I'm going to treat this like a date. So I'm going to get up. I'm going to shower. I'm going to shave because I wanted to make sure I can see everything that's going on.

Once I'm ready I get my little mirror that's perfect.

I lay down on the bed. Try to get comfortable.

I start checking the check from the top to the bottom. The way we're going to talk about it.

And.

Yeah, I'm not seeing what I was afraid of. There was no reason for me to be afraid. None whatsoever. And once I did it. It was like a relief. It's done. It's over with.

Until next month.

But I think the first I was the worst time because, after that, I knew what to expect.

My whole point in telling you this story is to say if you haven't checked yourself and you know you need to check yourself, think about why it is that you haven't checked yourself. Be honest with yourself. It's okay to be scared.

I wish somebody would've told me that because I was really beating myself up.

I'm here to tell you you're not dumb. It's not stupid. You have every right to be anxious and nervous about what you might see, especially if you've been in some of these forums and groups or these medical pages and you've seen the pictures. They will put the fear in you.

So you are totally justified, girlfriend. But don't let that stop you because it's way too important. And chances are when you do look down there, you're going to be fine. You're going to be able to deal with whatever it is that you see and now you know. Isn't that a beautiful thing? Now you're not wondering. Now your brain isn't running away with itself.

Check out the website show notes to see @Talk_peach's IG post.

• https://www.instagram.com/vulvarcancerawareness/
  • Vulvarcancerawareness
  
  
• https://www.instagram.com/lichensclerosusuk/
  • lichensclerosusuk
  
  
• https://www.instagram.com/lichensclerosuspodcast/
  • lichensclerosuspodcast
  
  

I have an idea for how we can stay connected. I want to do a monthly virtual meetup so we can connect and talk to each other and just hang out like girlfriends.

We can talk about Lichen Sclerosus. We can talk about life. We can talk about anything that we want to. And we can connect with other sisters who are going through the same things, who might have a little bit of knowledge that can help us.

And I want to see your faces. I love talking to you on Instagram. I love talking to you through email, but I want to see your faces too.

So if that's something that you think you might be interested in. I have a page set up at

lichensclerosuspodcast.com/connect.

If you want me to keep you informed as this develops. If you want to give me your input into what you might like. What you want to see. How you want to do it. What times are we good for you? If you want to do it! Then go to lichensclerosuspodcast.com/connect, enter your email address and I will email you weekly or biweekly and keep you updated.

Once we have enough people, then we can set a date and see each other! So the only way you'll be invited into the meetup is if you are on the email list, because, I'm going to shoot an email and there's going to have a password so we don't get zoom bombed.

So if you're interested signup today and let's meet up!

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…

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 and I will add them to the show notes on the website.

Don't forget to subscribe and follow me on social media.

Instagram - https://www.instagram.com/lichensclerosuspodcast/

Facebook - https://www.facebook.com/lichensclerosussupportnetwork

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…

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://www.facebook.com/lichensclerosussupportnetwork

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…

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…

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 they are as helpful to you as they are to me and the ladies that have been through my program.

Stay healthy, blessed, and loved.

Don't forget to subscribe and share.

Connect with me on IG @lichensclerosuspodcast and FB @lichensclerosussupportnetwork.

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…

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 through anxiety, stress, and fear brought on by the deeply engrained pressures put on us by society.

If you would like a chance to when a personally signed copy of Dr. Whitehouse's book, Pull Back Your Power, just leave the podcast a review and email me a screenshot at [email protected].

Also, listen to a deep guided meditation lead by Dr. Whitehouse here https://www.feminineconfidence.com/self-nurturing-coral-clearing/.

To follow or find out more about Dr. Whitehouse find her links below.

website and social media links:

https://feminineconfidence.com

https://facebook.com/annewhitehousephd

https://facebook.com/groups/pullbackyourpower

https://www.linkedin.com/in/dr-anne-whitehouse-73163118/

https://www.instagram.com/feminine_power_alchemist/

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…