Endo Year Reflections: #6

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. As we approach the end of the year, life gets crazy Holiday chaos, wrapping things up and just trying to keep it all together. But that shouldn't stop you from taking little moments to recharge. That's why, for the month of December, I'm bringing you a special series called IndoYear Reflections. These mini episodes will take a look back at the incredible guests and insights that have joined us this year. Each reflection is a chance to revisit the moments that inspired, educated and empowered us and to carry these lessons into the new year. In this episode, I reflect on the power of advocacy in creating change at a governmental level. After sitting down with my guests Dana Bolling and Shannon Cohen, I left feeling both empowered and powered up. Their insights into how advocacy, legislation and awareness can shape the future of endometriosis care were game-changing. Let's dive in.

Speaker 1:
1:41

As I reflect back on episode 71, my conversation with Dana Bolling still resonates deeply. Something Dana shared during our time together stuck with me in a way I can't shake. She compared living with this disease to climbing a proverbial endo-mountain, if you will, a climb that's relentless, exhausting and sometimes feels insurmountable. What really hit home was Dana's perspective on why we keep climbing. Yes, it's hard, so hard, but stopping isn't an option if we want to build a future with a better quality of life. That imagery of the mountains stayed with me because it captures the reality so many of us live, the strength it takes to keep moving, and even when every step feels like it's too much. I know I'm not explaining this as beautifully as she did, so I'll let Dana's words speak for themselves.

Speaker 2:
2:34

You know. You do the best you can with what you know, and your resources at the time and it's, you know, you can't criticize yourself because you didn't know better before you knew better. You know, once you do better then you try to do better. But it's, you know, a constant climbing the mountain right and you find one little peak where you can look out and be like okay, great, I finally have a diagnosis.

Speaker 2:
2:51

And then you keep climbing that mountain until you get to the excision plateau and you look out and see the view and it looks rosy and then you keep climbing again.

Speaker 1:
3:08

you know to deal with all of the other hurdles and the mental struggle with that is not to be dismissed. It gets hard, it takes a toll, it's taxing. Another powerful takeaway from my conversation with Dana was the importance of getting the definition of endometriosis right, not just for understanding the disease but for shaping the way it's addressed in legislation. As a practicing attorney, Dana had the unique ability to dive deeply into the bills in her state that dictate how endometriosis care and funding are presented and approached. What she found was shocking Language that was harmful, misleading and exclusive to so many in our community. It's a stark reminder that the smallest words in the bills, words we might overlook, can have an enormous implication for how care is provided, who receives support and how funding is allocated. Dana's insights made it clear why we must advocate for precise, inclusive language in these critical documents, Because when the wording is wrong, the care we fight so hard for is jeopardized. But I'll let Dana explain it in her own words. Her passion and expertise say it all.

Speaker 2:
4:11

So the two primary bills that I focus my efforts on are related to, again, an awareness campaign and a screening program and they are couched as being menstrual health bills that is sort of the phrase. They're using overall menstrual health screening program and awareness program, and so they've lumped PCOS and endometriosis in together on those bills and I understand they're primarily women's issues, but the bills had a lot of language that excluded folks who suffer from extra pelvic endo, which is something I've had it on the bladder, the bowels, the gallbladder, the appendix, you have it all over the place. So I'm intimately familiar with a lot of the extra pelvic endometriosis issues that arise with a lot of our folks and none of that was recognized in the legislation. They were targeting women of reproductive age. I'm drawing a blank right now. I don't have the bill of brain fog.

Speaker 2:
4:59

I'm drawing a blank in the language they use, because it's different in each bill, the little phrases are just a tiny bit different, but essentially women of reproductive age, 15 to 44. So it completely ignored pre-pubescent girls and folks who don't identify as female post-menopausal women. You know, a lot of us fall outside of that range. We're not menstruating individuals between 15 and 44. And so huge categories of endometriosis sufferers were going to be missed by these pieces of legislation, and that was concerning to me. They also specifically explained endometriosis essentially, as you know, again being a menstrual disease, retrograde menstruation being the cause, and that the cause, the reason we all feel pain is because these lesions bleed every month and cause pain. So it's just full of chock, full of misinformation, and so I went to work trying to change it and we've been successful in getting some small changes made. The big changes have yet to be completed.

Speaker 3:
5:53

And.

Speaker 2:
5:53

I don't know if they will be at this point. Unfortunately, these pieces of legislation specifically delegated authority for implementing this awareness campaign and the screening program to our state department of health, and one of them actually contained an instruction to obtain information from EFA Endometriosis Foundation of America in order to create those programs. And while I applaud the concept of seeking help from nonprofits in the community, I don't think we need to be having retrograde menstruation folks writing our legislation, because that's what's going to our doctors in the state, that's what's determining who's going to be identified by that awareness campaign and screening program, and so when you've got a 12-year-old who's having issues and belly aches, she's not going to be captured by that program.

Speaker 2:
6:37

And when you've got the 45-year-old who had a hysterectomy years ago but is still having problems, she's not going to be captured by those programs, Right? She's not included. Or if you have transgendered individuals, they're not going to be captured by those programs. So we're leaving out huge categories of folks and completely ignoring a lot of the Just the fact that many of us are identified because we present with other symptoms first, Not necessarily period symptoms, but you know, irritable bowel. We've all gotten an irritable bowel diagnosis of some.

Speaker 3:
7:07

The.

Speaker 2:
7:08

UTIs.

Speaker 3:
7:08

Yes, exactly so many other things.

Speaker 2:
7:12

Having legislation just perpetuate those stereotypes, those myths, the misinformation. It's mind-boggling to me. I don't want to see it here in the state misinformation.

Speaker 1:
7:21

It's mind-boggling to me. I don't want to see it here in my state Now. If you're wondering how you can help be part of this change, but the idea of getting involved at a legislative level feels overwhelming, or maybe you're breaking out in hives just thinking about it, don't worry, dana had advice for that too. She reminds us that you don't need to be a legal expert to make a difference, but it's crucial for all of us to know what laws and measures are in place in our state, because these laws can profoundly impact how you and so many others receive care. Being informed is the first step and from there, even small actions like reaching out to your representative or raising awareness in your community can ripple out into meaningful change. Dana's perspective was empowering and showed that advocacy doesn't have to feel so intimidating. She shares how you can get involved in a way that feels manageable and impactful.

Speaker 2:
8:13

And I understand it's really scary to go in front of a legislative committee and testify. It's intimidating, it's scary. They don't make it friendly and warm and welcoming. You know it isn't a warm, fuzzy thing to do and I understand a lot of folks aren't going to want to do that. But something we can all do is write to the legislators, send them emails, make phone calls to their offices so if there's something pending in your state, you can let them know how you'd like them to vote. You can specifically ask them please vote no on this, Please vote yes on this. And that's important and that's something you can do. Your friends and family members can do for you. And that's easy yeah, Easy to do.

Speaker 1:
8:47

As you can tell, advocacy was a hot topic for me to cover this year, not only because it's such a passion of mine, but also because it's necessary to give us the hope for better care. This was emphasized when I had the honor of sitting down with the Below the Belt and Indowet director, shannon Cohen, in episode 74. One of the most profound takeaways for me was Shannon's emphasis on the power of advocates around the world. Despite the barriers, despite the challenges and often against all odds, these advocates are truly making a difference. Shannon's perspective really reminded me how mighty and unstoppable this community is when we come together for a common goal.

Speaker 1:
9:25

What struck me most, though, was how Shannon highlighted the United States' slow progress when it comes to addressing endometriosis and related issues. It's sobering to hear that, as a so-called first world country, the US is lagging behind in implementing real change, and why? Because of all of the red tape, the bureaucracy and the frustratingly slow moving system that seem to prioritize politics over people. For me, this episode confirmed something I felt for a long time that while the system may be slow, the advocates working within and outside of it are a powerful force. They are the fuel for change, the reason momentum continues and the hope that keeps us all moving forward. So if you're feeling discouraged or wondering if your efforts matter, let this episode be a reminder they do. You do. Change is happening and it's because of advocates like you. Take a lesson to episode 74 with Shannon Cohen. It is happening and it's because of advocates like you. Take a lesson to episode 74 with Shannon Cohen.

Speaker 3:
10:28

It's inspiring, it's eye-opening, and I promise you'll walk away feeling energized to keep pushing for progress. I think things are changing and I think a lot of basically enough is enough, I mean, and I think that's happening everywhere around the world and I have to say the US is behind the curve on a lot of it. I mean, we're doing our, not for lack of trying by our advocates, it's just the system is so complex. It's just very complicated in this country right now, but places like Australia and France and Denmark and the UK, they're really making a lot of strides in putting together national action plans and getting movement on policy and in education. I think it's really incredible, you know, and we can all learn from one another. We are absolutely working hard in the US and there are just tremendous barriers to change. It doesn't mean they're insurmountable and we are getting past them, you know.

Speaker 3:
11:27

And the beautiful thing is right now, I think we're reaching like a critical, like a swell, you know where these issues quote unquote women's health conditions are getting a lot of attention and this is something that really applies to endometriosis and to all of us, and it's something that we can be a part of and to make sure that, you know, with policy and research funding, the endometriosis is included. That's something I work on every day, you know, behind the scenes, and so many others do too, to just make sure that endometriosis is included in all of these things, because it deserves to be there. I mean, it's flown under the radar long enough and, as Heather Radone says, it's like the wicked stepchild of gynecology. It's been that long enough. And because it's been relegated there, but it doesn't not because of any valid reason.

Speaker 3:
12:20

It needs to be out, people need to be talking about it, it needs to have priority and it deserves a transformative amount of research funding and research funding that propels the studies forward that actually make a difference in people's lives.

Speaker 1:
12:34

Thank you for joining me for this special episode of IndoYear Reflections. As we've seen through the wisdom of Dana and Shannon, advocacy is a powerful tool, whether it's shaping legislation, raising awareness or simply educating those around us. We all have a role to play in driving change. These conversations reminded me that every step, no matter how small, can help us climb that Indo mountain. It's not an easy journey, but together we can keep moving forward, advocating for a future where everyone has access to the care and understanding they deserve. As you go about your week, I encourage you to think about how you can make a difference, whether it's learning about your state's laws, having a conversation or just sharing your story. Little actions can spark big changes. Thank you for being part of this community, for showing up and for listening. If these episodes that we reflected back on resonated with you, I'd love for you to share it with someone who might find it helpful. Don't forget to subscribe and tune in for our next Indo-Euro Reflections. Until then, continue advocating for you and for those that you love.