In the Heart of Endo: Alanna’s Quest for Knowledge and Expert Perspectives Driving Endo Battery

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights. I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us. Thanks for joining me today. Grab a cup of coffee, a cup of tea or whatever you'd like and join me in this discussion at the table. Many of you have followed this journey of Indobattery for quite some time, and some are brand new, so I just wanted to start the new year off by introducing Indobattery and what the goal of Indobattery is, as well as who is this host, elana. Indobattery started with two women who wanted to get the most accurate information out there, and in order to do that, we felt like the podcast was the best way to go. As I continue this journey, it has not changed my goal at all. I still want to get the most accurate information I can out there. But you see, I'm not an expert, I'm no one that is overly qualified to do so. I'm not someone that understands everything about endometriosis and the Indo community. I am someone that has lived experience and you can't undermine that lived experience. But it also needs to have a balance. There needs to be a balance between expert insights and individual stories. I value the experts that come onto the Indobattery podcast because they bring resources that I would not be able to provide, but they do it in a way that is understandable for many. See, I am someone who, although I was pre-med and got to O'Kim and I was like bye, felicia, I am not doing this. That wasn't my skill set. I went to communications, so this is right up my alley. But there are times that when I would hear things quoted or papers stated or research stated, I didn't really understand the full grasp of that and it honestly wasn't super relatable to me because I didn't put it in place of where I was within my own journey.

Speaker 1:
2:41

My goal in doing this podcast is that anyone can sit down and understand a majority of what we're talking about. Not everyone will relate to every topic and that is okay, because we all have different journeys, our stories are very different, and what interests us, as it pertains to our story or otherwise, is going to be very different. And that's okay, and that is the beauty of having a well-rounded podcast, which is what my hope is. My hope is that I can continue giving information, giving insights and stories from other patients so that, when you're walking through your journey, you don't feel alone, you don't feel isolated, that you feel like there is someone else out there that gets you. Sometimes, in our most vulnerable moments, it's important to remember that other people are there with you and walking alongside you, and that's what I want this place to be A place of refuge, so that you can recharge that battery, that you aren't expending all your spoons of the day trying to figure out research, trying to figure out what next steps to take, all on your own. There's value in doing things together, and that is why this podcast really was created is so that we can all do this together. We can learn together. Like I said, I'm not the expert in everything, and so having experts on is just another tool to form a community that gives you the tools you need to navigate your journey.

Speaker 1:
4:12

I'm really trying to be careful about the way that I present information, because it's important that we get it right. I've been on the other end of that. I've been on the receiving end of misinformation and mistreatment, and that is the last thing that I want for those trying to navigate this nasty disease. It's not easy, it's tiring and if you're anything like me, fatigue sets in tenfold. So when you're trying to sift through the information presented to you and you're not sure what's right or what's wrong, or you know, maybe you just don't understand what they're talking about. That's why it's important for me to be able to present information to you that maybe it makes it a little bit easier to understand and even a little bit more relatable.

Speaker 1:
4:59

I certainly have learned a lot from the people that have been on this podcast and the questions I ask. I ask keeping in mind that not everyone is going to understand all the concepts of endometriosis or all the concepts of what can affect us when we live with endometriosis, and I certainly have learned by asking these questions and I hope that these questions have been helping you kind of understand this from a different perspective. Something that my daughter's first grade teacher said to her one time has stuck with me, and that is it's not always what you say, but how you say it and sometimes how you say it really can help you connect and learn along the way, and I have learned a lot in doing this podcast. I'm learning from other patients what they went through, which is helping me navigate, helping other people Walk through some of these similar steps. It's also helped me understand the disease as a whole.

Speaker 1:
5:56

I felt like I was so naive when I first started this and I think the beauty in doing this podcast for me has been that I have learned along with you. I have learned so much. I am still, again, not an expert in any way, shape or form, but I do feel like I have a better understanding, not only of the disease but of the community. I didn't realize this community was so robust, and you've heard me talk about this many times before, about the value of community and it being irreplaceable when it comes to walking through something that can feel so isolating. But I really want to highlight the fact that when I learn with you, it adds a sense of deep rooted community, and what I didn't realize as part of this deep rooted community came with a bunch of knowledge and a lot of commonality, which added to understanding the complexities of endometriosis and all the different complexities of endometriosis.

Speaker 1:
7:02

I really didn't know how many connections between endometriosis and other what some people call comorbidities, and I really think that for me I really like to call those co-challenges, because there's nothing more about some of the things that we're going through, although that is the medical term for a lot of that. They become more challenges and I don't want them to hold me down, but I do wanna learn how to manage and kinda navigate that a little bit better. And I've heard from many of you which I'm so thankful that you've reached out to me and talked to me about this as well, but that it has helped you to kinda walk through your journey with me, and that's been my goal all along is to bring information that has been vetted, that can be well understood from different resources, whether that's a patient advocate, whether that is an expert or whether that's a patient. I also have really found it important that I highlight all these nonprofits and organizations and people within the endometriosis community doing amazing work, so that you have more resources to pull from when it comes to navigating your journey. I again, don't know everything, but you may connect with someone else within the community that really helps you navigate this.

Speaker 1:
8:25

See, this podcast is not about me. Although I am learning a lot and I really enjoy it. It is important for me to tell you that this podcast is about you. This podcast is about helping others. If I can do that by pointing people the right direction and the way that's going to best help them and assist them, I'm going to do it. There are so many amazing people out there and there are so many amazing resources and organizations and experts out there that I think that it's important that we highlight all of them as best as we can.

Speaker 1:
9:01

I don't always get everything right. As much as I say this, I really want you to hear my heart that you've become part of this endobattery family and I want to take care of my family. I want to take care of these people whom maybe I haven't met you, maybe I don't know. You listen and that's okay, but you are still dear to me and everything that I do and I put out, I really want to make sure that I do it with the best of intentions behind it, that I'm doing it for you and to help you. That's not all I want to do with the Endobattery podcast, highlighting experts, highlighting organizations, advocates, patients and other stories.

Speaker 1:
9:42

I also want to highlight topics that can sometimes be really challenging to talk about and, for those that are my international people, I want to start reaching out more internationally and there are some amazing resources internationally, but it can be tricky to navigate and understand that. I also think that for everyone around the world, understanding each system, understanding each doctor's approaches, understanding kind of the challenges that we as patients have in different parts of the world, will help us understand the disease better, will help us understand care better, and I want to be able to highlight that Some of these conversations are not going to be easy to have. But if I can have these conversations with a little bit of a positive outlook, I want to, because this can be a daunting disease and sometimes it can strip our joy, and my goal with this podcast is, even if you smile, chuckle or laugh for five seconds, that is well worth it. We take so much on and it is such a heavy disease oftentimes that I want to bring a little joy to and navigating this with a little joy makes it a little bit easier, in my opinion, and sometimes it can be ridiculous things, but I really don't want to be so serious that it takes the life out of it and takes the joy, and so, yes, topics can be heavy and, yes, we will talk about things that sometimes aren't the most enjoyable things to talk about but can be helpful. But I want to do it with just a little bit of joy as well. So now that we know where Indobattery has been, where it's going and our overall goal as a family at this table, let me just tell you a little bit about me. A lot of you are new to joining the Indobattery family and I am so appreciative that you take the time to listen and I hope this podcast lightens your load just a little bit.

Speaker 1:
11:41

But as for me, I'm a wife, I'm a mother, I'm a daughter, I'm a sister, I'm a friend, I'm an aunt. I do not find joy in my family, my faith, my friends in my community and I find the most peace on the back of a horse stirring up at a mountain and for all my equestrian friends out there, yes, I ride western because I'm from Wyoming. You can take the girl out of Wyoming, but not the Wyoming out of the girl. But have a deep respect for those who are writing English as well, I enjoy traveling, I enjoy gardening, cooking and baking and, yes, of course, I enjoy my coffee, my tea and my occasional cocktail. I do not find joy in things like dusting and mopping and reaching the thing at the top of the shelf that is just too tall and out of my reach because it taunts me to hurt myself in order to get it. Words of affirmation is my love language and I do enjoy giving words of affirmation to others because, let's be honest, this world is full of criticism and harsh words ready to tear you down, so I find great joy in building others up, because we all can use a kind word now and again. I'm also an Indow Warrior.

Speaker 1:
12:45

This podcast, in many ways, has put a lot of pieces together. In my own story and in my own Indometriosis journey, see, there have been times that I, like many of you, have been told that painful periods are just normal. Or get pregnant and maybe you won't have this pain anymore. Or take this lube brawn and it will stop any growth that you have of Indometriosis, or this ablation will help get rid of your Indometriosis and will likely it won't come back. These are all things that many of us have heard and often have been the most harmful. See, I don't think my doctor meant in any way, shape or form, to hurt me, but because of the misinformation they had, I was misinformed and misled. This also led to many years of mismanagement of my symptoms and of the Indometriosis. This podcast has also highlighted that I will have a continued journey because of the Indometriosis, whether that's because of hormone replacement therapy or because of the lasting effects that the Indometriosis or the treatment of the Indometriosis has had on me.

Speaker 1:
13:47

In staying true to transparency, this season has been very challenging in many ways. It highlighted the times that I trusted doctors and other resources to help manage my pain, like the insets that I often took to manage the pain as I was growing up that have now wreaked havoc on my kidneys. Was that hard to hear? Absolutely, is it hard to navigate? Absolutely, I still have hope, but it is still a challenge for me.

Speaker 1:
14:15

Some of the other realizations that I've had in doing this podcast are the fact that mental health plays a huge part in our journey. I didn't realize that as I was growing up and the fatigue was so severe and the mental fatigue was so severe that I wasn't dumb. There were times I could just not retain the information that was spoken to me or that I was learning in school, because my fatigue was so bad and all I could do to get through the day was to kind of zone out, for lack of a better word. I didn't realize that this was an effect of the endometriosis. It wasn't until years later, and really until I started doing this podcast, that I fully grasped just how extensive the endometriosis played a part in my growing up and in my life, because it took me so long to understand the effects of the endometriosis and all the failed attempts at treatment and management of the endometriosis. And then along with that came some of the medical trauma that I experienced because of that. I faced a lot of disappointment when treatments didn't work like the doctors said that they would, or when my pregnancies made my pain even worse than it was before.

Speaker 1:
15:26

So in part of doing this podcast, it's been my mission to provide information given by real experts and real patients that can help you navigate this journey just a little bit easier, with accurate information that can give you better results long term. That's not to say that after proper excision you're not going to struggle with certain things. Like many of us who have to be on hormone replacement therapy, that is a tricky beast in and of itself, trying to manage the different elements of something that is not well known in women's health. I continue to reach out to those who have a better knowledge and a better understanding of all of these things that we are faced with, and I hope that this is going to bring you even more clarity within your journey.

Speaker 1:
16:18

Now, if you've listened to me ramble this long, you deserve a reward, so go ahead to my Instagram page, indobattery, like, share and comment that you heard this podcast. You might be one of the few that get some of the OG swag to show off just how supportive you really are, as well as a few other little gifts just for showing your support. I also want to say thank you for being such a great supporter of Indobattery. I'm going to work my tail off to try to make this podcast as helpful and as informative as possible, because it's not about me, it's about us. It's about all of us learning and growing together so that we can make future generations and current generations better. With the endometriosis care and information, there's still hope. Within the metriosis education. There's a lot of great things coming up this year, and I am excited to share some of the things that I'm learning, as well as what all our guests will bring to the table this year. So until next time, continue advocating for you and for those that you love, and happy new year.