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

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🎧 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 [e-mail], or visit www.endobattery.com.

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

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Episode Transcript

Speaker 1 (00:00):
Life moves fast and so should the answers to your
biggest questions.
Welcome to EndoBattery's QuickConnect, your direct line to
expert insights.
Short, powerful and right tothe point.
You send in the questions, Ibring in the experts and in just
five minutes you get theknowledge you need.
No long episodes, no extra timeneeded, and just remember

(00:20):
expert opinions shared here arefor general information and not
for personalized medical advice.
Always consult your providerfor your case-specific guidance.
Got a question?
Send it in and let's quicklyget you the answers.
I'm your host, alana, and it'stime to connect.
I'm joined by my expert guest,heather Guadone.

(00:44):
I'm joined by my expert guest,heather Guadone.
Heather is the program directorat the Center for Endometriosis
Care, or CEC, and is anationally recognized patient
advocate With over 30 years ofexperience.
She bridges clinical care,research and policy to improve
outcomes for those withendometriosis.
Heather is also aboard-certified patient advocate

(01:04):
and brings her own livedexperience with stage 4
endometriosis and infertility toher work, making her a powerful
voice for change andcompassionate care in the
endometriosis community.
Let's strengthen our knowledgewith Heather's wisdom.
How do we manage correctinformation so that we can A get
proper care, but B when we'retalking about advocacy and when

(01:28):
we're talking and we're fillingin that gap for people.
How do we make sure that whatwe're putting out there is good
information and helpfulinformation and not harmful?
Because I have always said thateven if you speak but you don't
have good information, it'sjust as harmful as being gaslit
and being passed by andeverything else.
And so I think it's importantthat we make sure we're getting

(01:49):
good information out of there,out there.
But how do we do that?

Speaker 2 (01:53):
Absolutely.
You know, I say all the timeit's not awareness, if it's bad
information.
I would rather there be noawareness than bad awareness and
we see too much bad awarenessand it really distorts the
disease in the public eye.
You know, I think you have togo to trusted resources.
The problem with that is who'sa trusted resource?

(02:13):
Is it the influencer selling,you know, their pyramid scheme
supplements for $500 a week thathas 12 million followers?
Or is it maybe a smaller,science-based, well-cited,
authoritative resource that sayslook, here's a journal article,
let me distill this down foryou.
Let me explain this to you andhelp you to understand why this

(02:37):
article makes sense andresonates with us and is able to
break it down in a reallyfacile way that the public
understands.
And is able to break it down ina really facile way that the
public understands.
Immediately, endogirls blogcomes to mind.
Kate and Laura, the founders.
Kate is a scientist.
She has an incredible knack tobe able to really distill down
complex, hardcore academicarticles in a way that is just

(03:02):
so simple and easily understoodby every level, health literacy
notwithstanding.
Anybody on social media oranywhere that they read her work
can understand it and it'swell-cited.
There's a discussion,supporting it.
Oftentimes she'll debate it.
That's a really good example ofan authoritative source.

(03:22):
Obviously we want to turn to thepeer-reviewed journals, of
course, because that's all wehave the problem with that is
that not everything we read,even in the peer-reviewed
journals, is going to beaccurate.
I can still find today, I canstill find articles that
position the disease as adisease of periods of white

(03:42):
working working women ofreproductive age.
So we have to be very carefuland kind of build a base
knowledge that we can go from abaseline, 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.

(04:04):
Right, it doesn't just affectthe pelvis, it's a systemic,
inflammatory, fibrotic,body-wide disease.
You know we have to have a baseknowledge and then from there
you can kind of build onto that.
But I think it's also importantto understand that we can't
boil the ocean, right, we can'tjust say, well, I am this vast,
all-knowing, you know,conglomerate of all endo

(04:26):
knowledge.
Nobody is nobody has all theanswers.
There is endless debate inevery corner of the endo world
about every aspect of it,whether it's surgery, what type
of surgery, what medication, ifany all of it.
So I think that you really haveto figure out what are you
trying to apply to your ownsituation.

(04:46):
Do you need to become empoweredand educated so that you can
have a conversation with yourphysician to support your
request for treatment?
Are you a caregiver that'strying to learn more about the
disease so you can advocate fora loved one?
Are you a medical student or aresident who's trying to learn
more about pathophysiology?
Or because you're interested indoing a fellowship?

(05:09):
You know, I think you have tofigure out where you're coming
from within the disease sphereand then sort of build your
knowledge and shape yourknowledge around that, because
everybody can't just sort ofknow everything right.

Speaker 1 (05:22):
That's a wrap for this Quick Connect.
I hope today's insights helpedyou move forward with more
clarity and confidence.
Do you have more questions?
Keep them coming.
Send them in and I'll bring youthe expert answers.
You can send them in by usingthe link in the top of the
description of this podcastepisode or by emailing contact
at endobatterycom or visitingthe endobatterycom contact page.

(05:46):
Until next time, keep feelingempowered through knowledge.