Best Worst Club- Endometriosis Life

Disclaimer- The stories you are about to hear are the personal experiences of each individual and the views expressed by guests are their own. Please listen with discretion as this series contains mature content that could possibly be triggering to some individuals. Mention of depression, suicidal ideation, medical trauma, sexual assault, disorder eating and other sensitive topics may come up. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice. The stories in the It's Not Just A Bad Period Series are difficult to listen to.  And I want to keep it that way because they aren't just stories, but the harrowing realities of each warrior that is bravely taking part. Although endometriosis was first identified over 160 years ago, substantial gaps in adequately addressing this disease remains. From research being severely underfunded to outdated medical procedures still being used, this disease is a beast to live with but existing in the current medical system makes it exponentially worse! I wish I could say these circumstances only exist for a few unlucky warriors but that’s not true. This is the typical experience of an endometriosis warrior and it’s time the world hears it!

In the Series this week you'll meet Samantha and hear about her experience navigating the medical system in Minnesota. This warrior has been through the ringer and has a message every endo warrior needs to hear! From bladder symptoms, multiple surgeries and doctors left not knowing what else to do, Samantha bravely shares how this progressive disease can change every aspect of your life. We chat about the importance of sharing our realities and the important work the online endo community does. We both share how it's our hope that Series like this one and our posts on Instagram will pave the way for the change and representation our community needs.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

Disclaimer- The stories you are about to hear are the personal experiences of each individual and the views expressed by guests are their own. Please listen with discretion as this series contains mature content that could possibly be triggering to some individuals. Mention of depression, suicidal ideation, medical trauma, sexual assault, disorder eating and other sensitive topics may come up. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice. The stories in the It's Not Just A Bad Period Series are difficult to listen to.  And I want to keep it that way because they aren't just stories, but the harrowing realities of each warrior that is bravely taking part. Although endometriosis was first identified over 160 years ago, substantial gaps in adequately addressing this disease remains. From research being severely underfunded to outdated medical procedures still being used, this disease is a beast to live with but existing in the current medical system makes it exponentially worse! I wish I could say these circumstances only exist for a few unlucky warriors but that’s not true. This is the typical experience of an endometriosis warrior and it’s time the world hears it!

In this week's episode you'll hear from our very own host, Mariah and her firsthand account on how the online endo community lead her to having excision surgery with one of the best, Dr. Sinervo at the Center for Endometriosis Care. The purpose of this series is to highlight our realities of trying to access care for endometriosis in the current medical landscape and how that desperately needs to change. Our experiences of medical trauma are not only not unique but contribute to the lack of care we receive. It’s not that some of us have fallen through the cracks. Its not just some of us who wait far too long to even receive a diagnosis. It’s not just that some of us don’t have the access to the kinds of specialists we need. 1 in 10 people assigned female at birth are diagnosed with endometriosis. Really stop to think about how common that makes this debilitating and currently incurable disease.

Check out the CEC website below as their website is a great and always up-to-date resource for endometriosis care.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

Disclaimer- The stories you are about to hear are the personal experiences of each individual and the views expressed by guests are their own. Please listen with discretion as this series contains mature content that could possibly be triggering to some individuals. Mention of depression, suicidal ideation, medical trauma, sexual assault, disorder eating and other sensitive topics may come up. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice. The stories in the It's Not Just A Bad Period Series are difficult to listen to.  And I want to keep it that way because they aren't just stories, but the harrowing realities of each warrior that is bravely taking part. Although endometriosis was first identified over 160 years ago, substantial gaps in adequately addressing this disease remains. From research being severely underfunded to outdated medical procedures still being used, this disease is a beast to live with but existing in the current medical system makes it exponentially worse! I wish I could say these circumstances only exist for a few unlucky warriors but that’s not true. This is the typical experience of an endometriosis warrior and it’s time the world hears it!

In this week's episode you'll meet Jane. She was on her way to gracing grand stages with her opera signing career until endometriosis wreaked havoc inside her body and throughout her life. Jane has been through the gauntlet when it comes to endometriosis "treatments". I use quotes there because many of the "treatments" she was put through are out-dated and ineffective. However, that doesn't stop the doctors from pushing them as if they're promising. Jane is now post- hysterectomy and wants to make it clear that endometriosis is NOT a uterine disease but in fact, a whole body disease that unfortunately remains incurable. *As a reminder a hysterectomy is neither a treatment or cure for endometriosis! It's crucial to understand that endometriosis tissue is NOT the same as the endometrial lining. This is why hysterectomies and hormonal birth control are ineffective treatments. This one distinction is where so much medical mistreatment lies and massive efforts are made by the endo community to correct this dangerous misinformation.* You can learn more about Jane and her reality living with endometriosis, follow her on Instagram here.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

Disclaimer- The stories you are about to hear are the personal experiences of each individual and the views expressed by guests are their own. Please listen with discretion as this series contains mature content that could possibly be triggering to some individuals. Mention of depression, suicidal ideation, medical trauma, sexual assault, disorder eating and other sensitive topics may come up. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice.

This episode is sponsored by Wilted Twig Co; It all started with a girl who loved to arrange flowers. I decided to put myself out there and open up my own business. I discovered this wonderful world of dried flowers. People really love them. I arrange fresh and dried flowers. I specialize in dried flowers and large dried flower installations. I also make pressed flower jewelry and sell at a handful of stores on AMI and have recently branched out to a boutique in Wisconsin. I love creating my customer’s visions. It’s the coolest thing to see custom floral works of art come to life. -From Courtney Cole

This series came together as a direct result of our community on Instagram. When I first put out the call to interview endo- warriors I was honestly surprised at the response. I have a small IG account and often think the algorithm works against me but our community proved to be stronger! Admittedly, the idea for this series wasn't the beginning. In fact, it wasn't until a few interviews in that I realized I am simply orchestrating something our community has been working on for years! I created the space and you stepped in to fill it with your powerfully heartbreaking and needing- to- be- heard realities of living with endometriosis. It's what the online endo- community has been doing; raising awareness of this common disease most have never heard of and calling out the systemic injustices we face! The stories in the It's Not Just A Bad Period Series are difficult to listen to.  And I want to keep it that way because they aren't just stories, but the harrowing realities of each warrior that is bravely taking part.

This is Sara's story; from the beginning Sara knew how important self advocacy would be on her endometriosis journey. She spoke up and yet her voice still wasn't heard and she endure severe medical trauma along her fight to diagnosis. 

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

Disclaimer- The stories you are about to hear are the personal experiences of each individual and the views expressed by guests are their own. Please listen with discretion as this series contains mature content that could possibly be triggering to some individuals. Mention of depression, suicidal ideation, medical trauma, sexual assault, disorder eating and other sensitive topics may come up. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice.

This episode is sponsored by Asteria Sol Creations is a locally owned woodworking business! Owned by Katelynn and Tim, a couple who wanted a creative outlet that they could be passionate about..plants and wood! Shop here!

This series came together as a direct result of our community on Instagram. When I first put out the call to interview endo- warriors I was honestly surprised at the response. I have a small IG account and often think the algorithm works against me but our community proved to be stronger! Admittedly, the idea for this series wasn't the beginning. In fact, it wasn't until a few interviews in that I realized I am simply orchestrating something our community has been working on for years! I created the space and you stepped in to fill it with your powerfully heartbreaking and needing- to- be- heard realities of living with endometriosis. It's what the online endo- community has been doing; raising awareness of this common disease most have never heard of and calling out the systemic injustices we face! The stories in the It's Not Just A Bad Period Series are difficult to listen to.  And I want to keep it that way because they aren't just stories, but the harrowing realities of each warrior that is bravely taking part.

In this episode you'll meet Jordan, a Colorado resident and small business owner, she shares how her endometriosis journey inspired her passion for boudoir photography. For years she was bounced back and forth from the GI ( gastroenterologist) to the gynecologist without receiving any answers. Things were happening to her body, the pain was becoming debilitating but it still took her years to hear the words "You have endometriosis". From botched excision to hearing it's because of retrograde menstruation, Jordan has run the endometriosis gauntlet! It wasn't until 2019 that she found out about Nancy's Nook (which could be an entire episode itself) and was able to access the list of excision surgeons. It was after her second excision that she began to plug into the Instagram endo- community and her people! 

Follow Jordan and her photography business on Instagram! She offers virtual photography sessions and is available in person near the Boulder area of Colorado.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

NIH Statistics-

The Best Worst Club- it's the club no one wants to be apart of with some of the best kind of people.

From learning the correct definition of endometriosis to how it presents and what questions to ask my doctor, it was all because of the online Endo Community. The cyber endo- warriors work endlessly to correct misinformation and arm warriors with the proper resources needed to navigate the systemic obstacles in our medical system and society. On average it takes 7- 10 years to receive an endometriosis diagnosis and that is not for lack of effort on the warrior's part. This endo statistic is one of the most frequently touted facts because it is disgustingly true and shocking, honestly it's a complete injustice. 

But what that statement doesn't cover is what it's actually like to live for at least a decade in a body that is being ravaged by a disease with no name. It doesn't explain the strength and self- advocacy it takes to be a patient in a medical system that chooses to dismiss this debilitating disease. And it can't begin to touch on the trauma of being gaslit over and over... and over again.

I often find myself saying "How can this be real?" and "I feel like I'm living in a conspiracy against endometriosis warriors.". Because once you've lived it, once you've done a little digging, the systemic problems become glaringly obvious and my activist- heart can't know these things and not attempt to do something.

It's mind blowing to me how integral of a part us warriors, the one's suffering with this disease, play in helping each other navigate the gauntlet that is endometriosis. I know that the online endo- community helped me when no doctor could diagnosis me. They helped me avoid ineffective treatments and inadequate doctors which could've made me worse. In a lot of ways I beat many endometriosis statistics because of this community, our community.

I hope that by sharing our raw and real realities it will break stigmas, dismantle misinformation and call out the systemic injustices we face. That the Best Worst Club can be an extension of the incredible work all the endo- warriors ahead of made have done.

Whether you've never heard of endometriosis, are in the grueling process of getting diagnosed or in the stages of trying to manage it there will be an episode for all of that. Because before any true change can happen the awareness that there is a problem in need of attention has to take place first!

Hit that "Subscribe" button and listen along with the nearly 200 million of us that are living with endometriosis.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula

Endo Instagrams to Follow:

Endo Statistic Source- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2078174/

Disclaimer- Some episodes may contain topics or personal experiences that could be triggering to some and are of mature nature. Please listen at your own discretion and remember that this podcast is never meant to be taken as medical advice. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice.