Endo Year Reflection: #7

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery. Grab your cup of coffee or your cup of tea and settle in and join me at the table as we continue our EndoYear Reflection Series. This series is all about taking a step back to look at the incredible conversations we've had this year, revisiting some of the most powerful and impactful moments from this podcast. Whether you've been with us all year or you're just tuning in, this is the perfect way to get a quick recharge. Maybe you'll revisit a conversation that stuck with you or discover an episode you didn't catch the first time around. Either way. These episodes may be small, but they're mighty. They're packed with big insights, powerful stories and moments of validation that remind us why we're in this together. So sit back, relax and let's dive into the moments that made this year on EndoBattery unforgettable.

Speaker 1:
1:30

This episode we're rewinding the tape to reflect on something I never imagined would take off like it has the EndoBattery Fast Charge series. Honestly, it started as a spur-of-the-moment idea, a wild hair moment, if you will. I wanted to create a hub of vetted research and information, broken down in a way that makes sense to, well, actual humans. Why? Because, like many of you, I've had those moments. One day, I'd think, is anyone even researching endo? Then the next day, I'd get frustrated by the studies that felt disconnected from real life experiences, and occasionally I'd find myself excited over a headline and think, yes, finally progress. But let's be real, I wasn't equipped to dive into this alone, so I called in reinforcements Enter board certified advocates Heather Godone and Kate Boyce, two powerhouses who not only know the research but know how to translate it. Together, we've tackled some fascinating studies this year and I'm thrilled to say this series has become one of the most requested features of the podcast.

Speaker 1:
2:34

Trust me, I didn't see that one coming. I'll admit, the first episode it was a little shaky. I had no clue how this series would come together or whether anyone would even tune in. But as we kept going I found myself loving it more and more. I've learned so much and genuinely enjoy digging into the research that matters. For example, we've explored connections like periodontal disease and endometriosis based on an analysis from the National Health and Nutrition Examination Survey. Spoiler alert turns out there's more happening in our mouths than just cavities. Then we tackled a unique challenge with postmenopausal endometriosis, proving that this condition doesn't clock out after menopause. And let's not forget the study that tied endometriosis to higher healthcare utilization in upper gastrointestinal symptoms, because apparently endo just has to involve your gut in things too right. And that's just scratching the surface. There have been so many more intriguing studies. We've unpacked together the best part. This series is only just getting started. As long as there's research coming out and let's hope that pipeline never runs dry I plan to keep these fast-charged episodes going strong. So thank you for listening, for loving this series as much as I do, and for reminding me why we're here to educate, empower and recharge our batteries. Here's to another year of learning together.

Speaker 1:
3:58

Something truly special that came out of the EndoBattery Fast Charge series was the connection and conversation with Allison Bontempo. Allison's research wasn't just another study. It was a voice a voice for so many who desperately needed it. Her work resonated deeply because she's not only a researcher, she's someone who personally experiences life with this disease. What I found so inspiring about Allison is how she balanced that personal connection. She didn't let her own journey cloud her research. Instead, she used it to fuel a driving force to push for the kind of change we've all been waiting for. Her work showed what's possible when passion and precision meet. Allison's dedication has filled a critical gap in endometriosis research and it's already making waves in the community. She's proof that when you combine lived experience with scientific rigor, you get something powerful, something that can't be, ignored.

Speaker 1:
4:50

Don't just take my word for it, but here's a little glimpse into my conversation with Allison. Take a listen.

Speaker 2:
4:56

So in one of my classes about computer mediated communication, I decided to apply my health focus, so I chose endometriosis and then, in the context of mediated communication, so you know developing a proposal for examining online community use of individuals with endometriosis. And I hadn't really searched the literature before and you know I had to for this project and I came across this one article I think it's called like the therapeutic affordances of online communities for women with endometriosis, or something like that, and it was talking about this delay that was nine, 10 years, and I was like that's so kind of bananas Again, like I hadn't experienced it, but I didn't realize it was such a problem. And then that led me to another study and to another study and I just kept reading about it. And then I started reading which often happens in the context of diagnostic error is, you know, the communication that takes place between patients and clinicians. And so I was finding, you know, correspondingly, during this time, patients were often feeling like their symptoms were dismissed. So I put together a proposal which was the assignment for the class, and the professor, you know not with a health background, but she was like you can actually like do this. So I designed the study. I did it during my master's and I feel like there's a lot more research out now Patients themselves doing endometriosis research, because I guess nobody else will, um, but so so I feel like that first study was at a time where there wasn't as much study, because I feel like I see a lot more, uh, advertising for studies on on social media now.

Speaker 2:
6:36

But this was back in, like, and I had reached out to a bunch of endometriosis organizations asking if they could advertise a study.

Speaker 2:
6:46

And you know I got like a few hundred in the first hour and it was across 40 different countries. I was like praying for like 150 because for certain, like analysis, like you need to have a certain amount to detect if there's a correlation between two things. And then I got like easily 150 in the first hour and I got I think it was like 1700 patients. And then in the comments, like I had a comment section at the end is there anything else that you want to share about your experiences? In case I missed something that was important and not really expecting patients to fill it out, but half the patients, after completing a 20 to 30 minute survey, went on to talk more about their experiences and it just felt like there's such a need for people to do research in this area and I didn't realize how desperately it was needed. But it was almost like that survey was a forum for patients to feel heard where historically they haven't felt heard by the medical community Not that I'm a medical person myself, but just institutionally I guess.

Speaker 1:
7:48

Being a patient yourself and then seeing what other patients are going through. Balancing that professional and the personal, yeah.

Speaker 2:
7:54

For me it's always been difficult. So here, in kind of a less academic-y space, I'm a lot more open and like I will disclose it. But in my research typically I don't you know. For example, I did an interview study, I introduced who I was, this and that I didn't say I have endometriosis. And that's always something that I struggle with, because I want them to know that I understand a lot of what they're experiencing. But at the same time I don't want them to feel like I'm doing this because I'm doing me search, as what we call it in PhD programs. I don't want them to feel like I don't care about them, that this is just a means to an end to understanding something that happened to me, because that's not the case. But if a patient will say, well, like, oh, just curious, what got you interested in this research?

Speaker 2:
8:39

You know, I'll disclose it. But it is a difficult thing and you know you don't want to be judged. I want patients to entrust me with their stories.

Speaker 1:
8:47

There's so much from this conversation with Allison that has stuck with me. One point in particular was the fact that research needs to consider all voices, no matter a person's race, religion, sexual orientation or beyond. If it's going to truly be good and complete research, it needs to include everyone. Anything less like focusing on less diverse populations means we're missing a huge part of the picture and, honestly, haven't we had enough of that already. But there was something Allison said that really gave me pause, something that's been on repeat in my inner dialogue ever since she said providers have this lack of curiosity. Now I know I'm not doing her words justice, because the way she said it hits so much deeper than just those few words. So instead of me trying to explain it, I'll let Allison tell you herself. Take a listen.

Speaker 2:
9:37

I feel like clinicians, doctors, these days, they lack interest and curiosity with patients and it's like, well, how can that be? Because they're doctors, they're like problem solvers. You think of House MD, like you know the show, but that's often not what patients get, you know. It's almost seems like they don't want to have to engage with something that's not algorithmic, right, because that's what they're being told. Is you, do you have this symptom? Yes or no? Yes, okay, go to this next set of questions. And that leaves things very black and white. And you know, if it doesn't fit within that box, it's not validated by clinicians. So we're the doctors who are genuinely interested in care about, curious about what's going on with patients. And just from what's reported, they don't seem to be patients. And just from what's reported, they don't seem to be. And again, like you cited some reasons of why that might be, you know, like concern for maybe financial outcomes more than patient care.

Speaker 1:
10:34

I'm truly excited for everything Allison's going to accomplish for the endometriosis community. She's already given so much voice and validation to those who need it most and, best part, she's just getting started. I really encourage you to keep following her work. It's a reminder that your voice matters and deserves to be heard. If you wanna dive deeper into our conversation, you can catch the full episode. It's episode 92. Trust me, it's worth a listen and with that, thank you for joining me on this journey of reflection. This year has been full of incredible guests who've brought so much insight, compassion and empowerment to the table. I hope you felt as inspired and encouraged as I have. Stay tuned for the next reflection episode. It's guaranteed to make you see things just a little differently. Until then, continue advocating for you and for those that you love.