Episode Transcript
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Speaker 1 (00:01):
Welcome to
Endobattery Fast Charged, a
series dedicated to keeping youinformed and empowered in the
realm of endometriosis.
Teaming up with board-certifiedpatient advocates, we bring you
the latest articles, researchand insights to equip you with
accurate information and adeeper understanding.
Whether you're expanding yourknowledge, staying updated or
seeking clarity, you're in theright place.
(00:21):
I'm your host, alana, and isEndoBattery Fast Charged
charging and empowering yourlife with knowledge.
Welcome back to EndoBatteryFast Charged, where we take the
overwhelming, oftenhead-scratching world of chronic
illness research and break itdown into real, relatable
(00:43):
conversations that don't requirea PhD to follow, just a cup of
tea, maybe a heating pad and anopen mind.
Today, we're doing one of myfavorite things diving into
research.
Yep, we're pulling back thecurtains on studies that have
been floating around some wildlycelebrated, others whispered
about in the corners of theinternet and figuring out what
(01:04):
they actually mean and, moreimportantly, what they don't.
Because, let's face it,sometimes a study says X is
linked to Y and, before you knowit, your aunt's on Facebook
telling everyone that kalecauses cavities.
So here's your gentle, lovingreminder Correlation does not
equal causation.
Just because two things show upin the same sentence doesn't
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mean one made the other happen.
It's science, not a soap opera.
So whether you're here becauseyou love to nerd out with us or
because someone once told youthat chocolate fixes hormones,
bless their hearts you're in theright place.
Let's take a look at the data,keep our minds open and maybe,
just maybe, maybe, challenge afew myths along the way, always
(01:49):
with compassion, curiosity and atouch of humor.
Let's plug in and power up.
All right, folks, buckle up toyour laparoscopy belts, because
today we're diving into aresearch reality check titled
Endometriosis is Not EndometriumReviewing the Overrepresented
Utopic Endometrium andEndometriosis is Not Endometrium
Reviewing the OverrepresentedUtopic Endometrium and
Endometriosis Research.
It's a mouthful, yes, but avibe.
(02:11):
Think.
Science fair meetsinvestigative journalism, with a
side of you had one job.
So what did these researchers do?
Did they cure endo?
Not quite.
Did they develop a newdiagnostic?
Also no, what they did do waslook through 122 publicly
available research data setsthat were supposedly about
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endometriosis and found drumroll, nearly half of them
weren't even studying endotissue.
Shocker, I know, that's right.
Scientists out there areclaiming to study endometriosis
while using tissue from insidethe uterus, the utopic
endometrium, as a stand-in forrogue misbehaving lesions
(02:54):
outside of it.
That's like using a house catto study tigers Technically
related, but also very much nope.
No, now, to their credit, thisteam wasn't just pointing
fingers and yelling you did itwrong.
They actually mapped out whythis matters.
Endolesions and utopicendometrium don't behave the
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same biologically, molecularlyor immunologically.
So using the wrong tissue meanswe're building our
understanding of endometriosison a foundation of mulch wet
mulch with glitter on it.
Here's the kicker.
Many mislabeled samples weren'teven intentional scams.
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It's just that the researchworld kind of collectively
shrugged and said close enough,and then moved on to publish.
Meanwhile patients are likecool, can I get relief now?
The answer is maybe, but onlyif your lesions behave exactly
like a healthy uterus lining sounlikely.
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So what do the researcherssuggest?
Study actual lesions.
People Use better labels.
Be specific, because the soonerwe stop confusing endo with
endo-ish, the sooner we get realanswers and real solutions.
It's not a cure, it's not amiracle Heck, it's not even a
new drug, but it is a moment ofscientific accountability.
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And if we're serious abouthelping people with endo, that's
where we start with the righttissue.
Endometriosis is notendometrium, and apparently
that's news.
While we're unpacking studies,let's unpack this one as well.
This study highlights even morewhy it's important that we
understand that endometriosis isnot endometrium, because we're
(04:43):
unpacking the study with a titlethat sounds like a polite
warning label but actually hitslike a plot twist Quality of
life of patients with bilateraloophorectomies before the age of
45 for treatment ofendometriosis.
In plain speak, what happenswhen you lose both ovaries
before 45 in the name oftreating endo, and whether your
quality of life afterward throwsa celebration or files a
(05:07):
complaint?
The researchers followed 52women in France who had
bilateral oophorectomies orsurgical menopause full stop
before they age 45.
They were about 40 at the timeof surgery and 43 when surveyed.
The researchers used a toolcalled MenQOL, menopause Quality
of Life Questionnaire, to askhow they were doing.
(05:28):
Spoiler, they were surviving,but thriving not so much.
The worst score sexual qualityof life they averaged 4.77.
And vasomotor symptoms Hello,hot flashes and night sweats at
4.01.
Women who were smokers or hadhigher BMI fared much worse.
Strangely, hormone replacementtherapy didn't seem to help much
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, which feels like someoneunplugging the fan in a sauna
and calling it fine.
But here's the real kicker thiswasn't a before or after study.
It was a one-time snapshot.
So we don't know how thesewomen were doing before surgery
and we definitely don't know howdifferent types of HRT might
have helped if better tracked.
It's kind of like showing up tothe third act of a movie and
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trying to guess what the heckhappened in act one.
Also, no control group, nocomparison to endo patients who
didn't have their ovariesremoved Just 52 women from two
hospitals in Toulouse.
So while it's a powerful signalflare, it's not a definitive
map.
And that missing info on HRTbig yikes map and that missing
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info on HRT Big yikes.
If you're going to evaluatehormone therapy, maybe tell us
what, how much or for how long.
Still, the study does somethingreally important.
It shines a spotlight on thefallout of surgical menopause in
younger endopatients.
It makes a case for pre-opcounseling, lifestyle guidance
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and individualized post-opsupport.
In short, if you're going toyank out the ovaries, we better
show up afterwards with morethan just a good luck.
And because we're on the pathwayof understanding pros and cons
of endometriosis and the studiesthat follow them, we're going
to take a look at this nextstudy titled the Phenotype and
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Genetic Association BetweenEndometriosis and Immunological
Disease Try saying that fast, 20times Translation.
This study looked at howendometriosis might be linked,
both in symptom and genetics, toa bunch of immune-related
conditions and, spoiler, endodidn't come alone.
It brought a whole crowd to theparty.
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Using data from a massive groupof people think 8,000 plus with
endo and over 64,000 withimmune conditions researchers
found that people withendometriosis were way more
likely to also have immune orinflammatory conditions like
rheumatoid arthritis, multiplesclerosis, celiac disease,
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osteoarthritis and psoriasis.
So if endo feels like more thanjust a period problem, that's
because it is.
They even looked at genes andfound that endometriosis shares
some of the same geneticpatterns with these immune
conditions.
So it's not just coincidence,it's written in code.
In fact, they saw signs thathaving endo might increase your
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chances of developing rheumatoidarthritis later on Not
dramatically, but enough toraise an eyebrow.
Now here's the thing this isn'ttotally new news.
Patients have been saying thisfor years.
Smaller studies have said thesame thing, but what this
research does is add someserious backup.
It's like finally getting thereceipts for what the community
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has been telling the doctorsforever.
Endo is a full body condition,not just something that messes
with your uterus.
To be clear, having endodoesn't mean you're guaranteed
to get these other illnesses.
It just means your chances arehigher.
And even though they saw somegenetic links, your lifestyle,
environment and overall healthstill play a huge role in how
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things play out.
The good news if we understandhow endometriosis overlaps with
other conditions, we might findbetter treatments, maybe even
share meds or research betweenthem.
This study found a few specificgenes that could be helpful
starting points.
That's promising for futurecare that looks at your whole
self, not just one system at atime.
(09:25):
Endometriosis isn't just aboutpelvic pain or periods.
It's a complex condition that'sconnected to your immune system
and it deserves care thatreflects that.
This study gave us strongerproof of what many of us have
known all along and that, myfriends, is a step in the right
direction.
What's a step in the mehdirection is this next study
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that we're going to take a lookat, titled Adverse Childhood
Experiences and the Risk ofEndometriosis.
A Nationwide Cohort StudySounds intense, right and,
honestly, it kind of is.
This research looked at over 1.3million Swedish-born women over
27 years, which is prettyimpressive, and the authors
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concluded that things likeprenatal mental illness,
substance use, being raised by ateen parent, exposure to
violence, instability andpoverty were all linked to
higher risk of being diagnosedwith endometriosis, and the more
childhood adversity someoneexperienced, higher that risk
seemed to be.
It's giving trauma bingo, butmake it gynecological.
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Let's start with the good stuff.
This study had size on its sidemore than a million people.
That's not just a sample.
It's a small nation.
It also reaffirmed what publichealth experts already know
Adverse childhood experiences,aces can have long-term health
impacts.
The data showed a dose-responsecurve, meaning the more
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adversity someone faced, thehigher their chances of
receiving an endo diagnosis.
And hey, studying potentialrisk factors for endo always
welcome.
We want to understand thedisease better.
We just need to make sure we'reasking the right questions.
Here's where things get alittle shaky.
Correlation is not causation.
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Yes, people with more childhoodadversity had higher rates of
endometriosis diagnosis, but itdoesn't mean trauma caused the
disease.
There's a huge differencebetween having more interactions
with the healthcare system andbeing biologically more likely
to develop endo.
People with ACEs ofteninterface more with medical and
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social services.
That means more opportunitiesto get diagnosed, not
necessarily more disease.
The study lightly nods to this,but it doesn't explore how
access provider bias or systemicinequalities might shape who
gets recognized and treated.
Let's talk about the big issuehow this study could be
misinterpreted.
Saying adversity increases riskof developing endometriosis
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makes it sound like trauma isthe cause.
That framing is dangerous.
It reinforces the outdated,harmful idea that chronic pain
is psychological or, worse,self-inflicted.
We've been down that roadbefore and it set endometriosis
research back decades.
And can we talk about what thisstudy doesn't mention, like the
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cases of endometriosis found incisgender men and fetal tissue?
Those alone poke giant holes inthe idea that childhood trauma
causes endo.
Pain isn't always rooted inpsychology and endo definitely
isn't.
The study also overlooks onekey possibility Many people with
trauma histories are morelikely to be believed when they
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describe pain, or maybe they'reseen by specialists more often,
or maybe their records includemore detailed notes because of
social service involvement.
These are diagnostic patterns,not biological risk factors.
Without accounting for that,the whole risk of developing
endo claims feels like a littleshaky leap.
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And while the authors do admitACEs might increase pain
severity and likelihood ofseeking care, they tuck that
critical nuance way down in thefine print while the headline
runs wild with trauma equalsendo.
To be clear, aces matter.
The long-term health effects oftrauma deserves attention, but
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using them to explain a diseaseas complex and biologically
driven as endometriosis is liketrying to explain a hurricane by
blaming the wind chimes.
It's simplistic, misleading anddistracts from a more urgent
question, like why we stilldon't have widely available
diagnostic tools, bettertreatments or sufficient funding
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.
We need research that focuseson genetics, immune system
dysfunction, environmentalexposure, endocrine disruption,
actual mechanisms and ahealthcare system that
recognizes systemic bias, notone that confuses pathology with
personal history.
Well, that's a wrap on today'sdeep dive.
I hope this episode helped makeall that research feel a little
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less intimidating and a lotmore empowering, because
understanding the data, reallyunderstanding it, puts the power
back in your hands, whetherit's recognizing what's solid
science, what's still evolvingand what just doesn't quite add
up.
The more informed we are, themore equipped we are to advocate
for ourselves, for others andfor better care in the
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endometriosis space.
So if you're walking away todaywith even one new insight and
one moment of clarity, that's awin, and if it sparks a little
fire in you to push for changeor ask bigger questions in your
own care, even better.
Remember, you don't have to bea researcher to understand your
body or demand better.
You just have to stay curious,stay courageous and keep showing
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up, because change starts withawareness and awareness starts
here.
Until next time, continueadvocating for you and for
others.
Bye.