Endo Year Reflection: #11

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 IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your cup of coffee or your cup of tea and join me at the table.

Speaker 1:
0:45

This year is wrapping up fast and Christmas is right around the corner. Whether you're soaking up the holiday joy or racing through a never-ending list of last-minute to-dos, I'm here to offer you a quick recharge With the EndoYear Reflection Series. This special segment takes a look back at some of the most impactful moments and profound insights from the past year, those moments that make you pause and think wow, that hit home. What never fails to inspire me is the resilience, grit and unwavering determination of advocates. In episode 78, I sat down with Casey Berna, an incredible individual who wears many hats patient advocate and licensed social worker. Casey is dedicated to guiding others through the ever-changing journey of endometriosis care. To say this journey is difficult is an understatement. One key point Casey brought up is the staggering mental health challenges faced by those living with endo. For those of us walking this path, it's not surprising, but the severity might be. Here's a clip that truly captures her perspective.

Speaker 2:
1:48

You know patients who are feeling a lot of anxiety. I think I forget what the statistic is, but a lot of patients with endometriosis experience anxiety, depression and also sometimes suicide ideations. So I think that's also a really big challenge for patients is having those challenges like on top of chronic pain, although they're often like woven together and interconnected. You know, finding them other multidisciplinary care is really hard, like finding them a pelvic floor therapist in town who like understands. So I mean, I think that's just like some of the challenges that a lot of patients that I see face for sure.

Speaker 1:
2:28

As Casey highlights, the challenges don't end with the patients. Living with endo is a shared experience, and support systems whether they're partners, family members or friends often bear a significant emotional load. They're not just bystanders, they're co-advocates navigating this uphill battle alongside us, yet their role is often overlooked. Casey's perspective on this left me reflecting deeply.

Speaker 2:
2:53

I think, just as patients feel isolated, the support people also feel incredibly isolated because society does a really good job in sort of having awareness around other diseases and illnesses. Like you know, if your partner has cancer it's really horrible. But I feel like then the community like for example, recently someone in my neighborhood was diagnosed with like a terrible cancer and the neighborhood, everyone came together, everyone's supporting the family, even for things like the flu. Folks in the community know to drop off soup, they know to leave it at the doorstep, like can I go food shopping for you? But a lot of things with endometriosis and infertility or pregnancy loss, folks don't know what endometriosis is. A lot of the times they don't know how to help and often the person not only the patient but the support people going through it there isn't that sort of rallying that like automatically happens, like for some other things, or that understanding of needs. So it absolutely can make a partner feel incredibly isolated and I think anytime they can reach out, as Sally Sorrell with the enemy choices summit I think it's still on their YouTube page they have something called like how to support a loved one and we interviewed it was less Henderson and their partner.

Speaker 2:
4:17

It was like a mom and a daughter and I think it was like another patient and her husband, like it was a group of people and we sort of interviewed them all and it's a great resource for you know, partners or loved ones out there to sort of listen so that they don't feel alone and they don't feel so isolated. And I wish you know a lot of my patients. I was like what if, like, your family had gone to therapy to understand this better, to be able to support you better, like how much better would you feel? And often it's a lot better. You know, like having that belief and that support and that foundation can really be life changing for a lot of patients who it's just like another obstacle if family members don't know how to be present or be supportive if family members don't know how to be present or be supportive.

Speaker 1:
5:07

From one amazing advocate to another in episodes 79 and 80, I had the privilege of sitting down with Jen Moore, a tireless advocate from the UK. Jen not only validated much of what Casey shared, but also shed light on the additional barriers to care and advocacy across the pond. What stood out most in our conversation was the shared frustration over the lack of curiosity for medical providers. Much like Alison Bontempo alluded to, jen described how often patients are dismissed with comments like your scans look fine. As though that's the end of the story. There is no curiosity in healthcare.

Speaker 3:
5:37

From my personal experience and the experience of thousands of others I've spoken to, there's no. I mean I know there are individuals who are like this, but as a whole there is no. I don't know, but let me find out for you. Or I'm not sure, but I know a great person who will. So let me put you in touch. Or even let's get to the bottom of this, because it might not be that your scan might be clear, but something's clearly going wrong. So let's get to the bottom of this, because it might not be that your scan might be clear, but something's clearly going wrong. So let's get to the bottom of it.

Speaker 3:
6:04

And that seems to be missing from pretty much all of the healthcare practitioners that I've spoken to over the last 22 years. Yeah, and I don't know why. I speak to the clinical school at Cambridge University a lot, because I'm working with it on a project with them there and it's something they're really trying to instill. But what we're kind of not sure is what happens once they leave university and then there's something that drops off, and whether that's stress budget resource, we don't know. But there definitely needs to be something to discover that, because it's just not not there. It's almost like oh, your scan's clear, off you go. Or that blood test is fine, you're good like there's no. So why are you in that much pain? Why are you losing that much blood?

Speaker 1:
6:52

there's just no questions and it's yeah, it's definitely a contributing factor to the delays I think j Jin also emphasized how this lack of curiosity stems from a glaring gap in education. If some of the world's top medical schools aren't teaching about endometriosis, how can we expect providers to diagnose or treat it effectively?

Speaker 3:
7:12

This was both sobering and infuriating to reflect on, you know when it comes to our bodies, women's bodies, girls' bodies, bodies with endometriosis. When it comes to our bodies, women's bodies, girls' bodies, bodies with endometriosis, that you know they're not designed to fit into the system. That just sees it as a period problem, which we know categorically isn't. But that's the way it's seen and unfortunately it's not even really taught in our clinical schools for future doctors. That's the project that I'm working on with Cambridge University is to get endometriosis formally onto their medical school curriculum, because that's meant to be like one of our top universities, one of the, you know, leading ones in the world, and it's adjacent to one of our leading hospitals in the UK and one of our leading biomedical research campuses in the UK, and yet they don't teach anything about endometriosis, and it's so. If we don't even have our doctors knowing what it is and how to treat it, what hope do we have? Right, you know, we're kind of like how?

Speaker 1:
8:11

do you even begin? One moment from my conversation with Jen that I'll never forget is when she shared a story about spending three days on a floor and we all know how challenging that is Combing through medical textbooks, only to find information on endometriosis severely lacking. It's a scene so many of us can relate to the desperate search for answers where there seems to be none.

Speaker 3:
8:34

I actually went and sat in the University of Cambridge Medical Library. I went and sat in there and they have a whole gynecology stack and I sat on the floor in between these two stacks and I looked in every single book, every single one. There was a lot. It took me like three days and I can count on one hand the number that had correct definitions of endometriosis. Three days worth of books, one hand. And out of those, I think am I right in saying only one? I'm pretty sure it's only one Then went on to give correct treatment options. So even the other ones that had the correct definition. They then went on to give misinformation about how to treat it. They went on to say a hysterectomy is a cure. There was one book in this whole entire library and the hysterectomy doesn't solve like thoracic endometriosis.

Speaker 3:
9:30

It doesn't solve diaphragmatic or any it doesn't solve it, or bowel or bladder or any, I mean, unless you have it on your uterus somewhere on the outside, it's not solving it.

Speaker 1:
9:43

Jen's experience, coupled with the countless stories patients have shared with her about dismissive or downright absurd comments from providers, led her to create the project. They Said what? And I have to kind of say it that way because I just kind of feel like they said what you all know. If you've ever been told something outrageous by a medical professional, you'll feel seen in this very clip so it's called.

Speaker 3:
10:08

They said what's project and that's the handle on instagram and tiktok although I haven't actually done anything with tiktok yet um, and then you can also access it on my website, which is genmore forward slash dot. Co dot. Uk forward slash. They said what project and it's at the moment we're in collation stage, so we are gathering all of these experiences of women's health dismissal, gaslighting, just anything across all of women's health, so menopause, menstruation, anything, and uh, yeah. So then when we've done that, we will collate it all, make it into a report.

Speaker 3:
10:40

We're also working with psychologists to create resources for people that are going through medical gaslighting because, like we said earlier, it's just trauma upon trauma upon trauma upon trauma and everybody has their breaking point. So it was really important to us that we um, we created some resources as well for people that are going through this, and then we will also create recommendations of how we can start to chip away at that in the future. But yeah, the name actually came from my friend, because when I Told her, I sent her a voice note about the comment I told you a minute ago about the environmental impact and she literally sent one back to me being like hey, sen what. And then she was so angry about it and I was like that's a really cool name and so yeah, she's a graphic designer, so she designed it all for me and stuff. So yeah, it came from my friend's outrage.

Speaker 1:
11:28

What struck me most about both Casey and Jen is their passion and drive to change the narrative around endometriosis. Their stories are relatable, their advocacy is inspiring and their determination is contagious. If you haven't already, I encourage you to listen to these episodes episodes 78 with Casey and episodes 79 and 80 with Jen on your favorite streaming platforms, and don't forget to subscribe so you get notification of when the next endo year reflection episode arrives. Thank you for taking the time to sit at the table with me today. I'm convinced that advocates like Casey and Jen are the momentum for change in the fight against standard endometriosis care and other chronic illnesses. Their work and their courage remind me why this fight is so worth it. We deserve better care, we deserve better answers, and together we can push for that change. Until next time, continue advocating for you and for those that you love. Thank you.