QC: Navigating the Maze of Accurate Endometriosis Information and Advocacy with Heather Guidone

🎧 Endometriosis Facts vs Fiction: Expert Insights with Heather Guidone of the Center for Endometriosis Care

Are you overwhelmed by conflicting endometriosis information online? In this must-hear episode, Heather Guidone, Program Director at the Center for Endometriosis Care (CEC), joins us to break down how to navigate the flood of misinformation—and why it matters more than ever.

✅ Learn how to identify credible endometriosis resources
 ✅ Discover the difference between influencer noise and medically accurate education
 ✅ Get clarity on what endometriosis actually is—hint: it’s NOT just a menstrual disease
✅ Hear why EndoGirls Blog is a game-changer for translating research into accessible info
✅ Understand why no one has all the answers—and what that means for your care
✅ Tailor your approach whether you're a patient, caregiver, or healthcare professional

🧠 “It’s not awareness if it’s bad information.”
 This quote from Heather says it all—education must be accurate to be empowering.

💛 Whether you're newly diagnosed, advocating for someone you love, or deep into your healing journey, this episode equips you to ask better questions and find real support.

🔗 Got questions for future episodes?
 Send them via the episode link, email us at contact@endobattery.com, or visit www.endobattery.com.

#EndometriosisAwareness #EndometriosisPodcast #HeatherGuidone #CenterForEndometriosisCare #EndoEducation #Misinformation #ReproductiveHealth #PelvicPain #EndometriosisSupport #PatientAdvocacy #EndoBatteryPodcast

Chapters

• 0:00 Introduction to Quick Connect Format

Transcript

Speaker 1: 0:00

Life moves fast and so should the answers to your biggest questions. Welcome to EndoBattery's Quick Connect, your direct line to expert insights. Short, powerful and right to the point. You send in the questions, I bring in the experts and in just five minutes you get the knowledge you need. No long episodes, no extra time needed, and just remember expert opinions shared here are for general information and not for personalized medical advice. Always consult your provider for your case-specific guidance. Got a question? Send it in and let's quickly get you the answers.

Speaker 1: 0:34

I'm your host, alana, and it's time to connect. I'm joined by my expert guest, heather Guadone. I'm joined by my expert guest, heather Guadone. Heather is the program director at the Center for Endometriosis Care, or CEC, and is a nationally recognized patient advocate With over 30 years of experience. She bridges clinical care, research and policy to improve outcomes for those with endometriosis. Heather is also a board-certified patient advocate and brings her own lived experience with stage 4 endometriosis and infertility to her work, making her a powerful voice for change and compassionate care in the endometriosis community.

Speaker 1: 1:15

Let's strengthen our knowledge with Heather's wisdom. How do we manage correct information so that we can A get proper care, but B when we're talking about advocacy and when we're talking and we're filling in that gap for people. How do we make sure that what we're putting out there is good information and helpful information and not harmful? Because I have always said that even if you speak but you don't have good information, it's just as harmful as being gaslit and being passed by and everything else. And so I think it's important that we make sure we're getting good information out of there, out there. But how do we do that?

Speaker 2: 1:53

Absolutely. You know, I say all the time it's not awareness, if it's bad information. I would rather there be no awareness than bad awareness and we see too much bad awareness and it really distorts the disease in the public eye. You know, I think you have to go to trusted resources. The problem with that is who's a trusted resource? Is it the influencer selling, you know, their pyramid scheme supplements for $500 a week that has 12 million followers? Or is it maybe a smaller, science-based, well-cited, authoritative resource that says look, here's a journal article, let me distill this down for you. Let me explain this to you and help you to understand why this article makes sense and resonates with us and is able to break it down in a really facile way that the public understands. And is able to break it down in a really facile way that the public understands. Immediately, endogirls blog comes to mind. Kate and Laura, the founders.

Speaker 2: 2:49

Kate is a scientist. She has an incredible knack to be able to really distill down complex, hardcore academic articles in a way that is just so simple and easily understood by every level, health literacy notwithstanding. Anybody on social media or anywhere that they read her work can understand it and it's well-cited. There's a discussion, supporting it. Oftentimes she'll debate it. That's a really good example of an authoritative source.

Speaker 2: 3:22

Obviously we want to turn to the peer-reviewed journals, of course, because that's all we have the problem with that is that not everything we read, even in the peer-reviewed journals, is going to be accurate. I can still find today, I can still find articles that position the disease as a disease of periods of white working working women of reproductive age. So we have to be very careful and kind of build a base knowledge that we can go from a baseline, understanding the basic definition. It's not the native endometrium, it behaves differently, so it's endometrial-like. It's not a menstrual disease, although painful periods might be part of it for some people. Right, it doesn't just affect the pelvis, it's a systemic, inflammatory, fibrotic, body-wide disease. You know we have to have a base knowledge and then from there you can kind of build onto that. But I think it's also important to understand that we can't boil the ocean, right, we can't just say, well, I am this vast, all-knowing, you know, conglomerate of all endo knowledge.

Speaker 2: 4:26

Nobody is nobody has all the answers. There is endless debate in every corner of the endo world about every aspect of it, whether it's surgery, what type of surgery, what medication, if any all of it. So I think that you really have to figure out what are you trying to apply to your own situation. Do you need to become empowered and educated so that you can have a conversation with your physician to support your request for treatment? Are you a caregiver that's trying to learn more about the disease so you can advocate for a loved one? Are you a medical student or a resident who's trying to learn more about pathophysiology? Or because you're interested in doing a fellowship? You know, I think you have to figure out where you're coming from within the disease sphere and then sort of build your knowledge and shape your knowledge around that, because everybody can't just sort of know everything right.

Speaker 1: 5:22

That's a wrap for this Quick Connect. I hope today's insights helped you move forward with more clarity and confidence. Do you have more questions? Keep them coming. Send them in and I'll bring you the expert answers. You can send them in by using the link in the top of the description of this podcast episode or by emailing contact at endobatterycom or visiting the endobatterycom contact page. Until next time, keep feeling empowered through knowledge.