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We dive into endometriosis research, breaking down recent studies to understand what they actually mean for patients and where science may be misleading us.
• Critical review reveals nearly half of endometriosis research isn’t even studying the right tissue
• Bilateral oophorectomy before age 45 leads to significant quality of life challenges, with HRT providing insufficient relief
• Large study confirms endometriosis shares genetic links with multiple immune conditions
• Research on childhood adversity and endometriosis confuses correlation with causation
• Scientists need to study actual endometriosis lesions rather than using endometrium as a stand-in
• Understanding research limitations empowers patients to advocate for better care
Continue advocating for yourself and others, and keep pushing for more accurate research that will lead to better treatments and understanding of endometriosis.
Links
The phenotypic and genetic association between endometriosis and immunological diseases
Adverse childhood experiences and the risk of endometriosis—a nationwide cohort study
Website endobattery.com
Welcome to EndoBattery Fast Charged
Speaker 1
0:01
Welcome
to
Endobattery
Fast
Charged
,
a
series
dedicated
to
keeping
you
informed
and
empowered
in
the
realm
of
endometriosis
.
Teaming
up
with
board-certified
patient
advocates
,
we
bring
you
the
latest
articles
,
research
and
insights
to
equip
you
with
accurate
information
and
a
deeper
understanding
.
Whether
you're
expanding
your
knowledge
,
staying
updated
or
seeking
clarity
,
you're
in
the
right
place
.
I'm
your
host
,
alana
,
and
is
EndoBattery
Fast
Charged
charging
and
empowering
your
life
with
knowledge
.
Welcome
back
to
EndoBattery
Fast
Charged
,
where
we
take
the
overwhelming
,
often
head-scratching
world
of
chronic
illness
research
and
break
it
down
into
real
,
relatable
conversations
that
don't
require
a
PhD
to
follow
,
just
a
cup
of
tea
,
maybe
a
heating
pad
and
an
open
mind
.
Today
,
we're
doing
one
of
my
favorite
things
diving
into
research
.
Yep
,
we're
pulling
back
the
curtains
on
studies
that
have
been
floating
around
some
wildly
celebrated
,
others
whispered
about
in
the
corners
of
the
internet
and
figuring
out
what
they
actually
mean
and
,
more
importantly
,
what
they
don't
.
Because
,
let's
face
it
,
sometimes
a
study
says
X
is
linked
to
Y
and
,
before
you
know
it
,
your
aunt's
on
telling
everyone
that
kale
causes
cavities
.
So
here's
your
gentle
,
loving
reminder
Correlation
does
not
equal
causation
.
Just
because
two
things
show
up
in
the
same
sentence
doesn't
mean
one
made
the
other
happen
.
It's
science
,
not
a
soap
opera
.
So
whether
you're
here
because
you
love
to
nerd
out
with
us
or
because
someone
once
told
you
that
chocolate
fixes
hormones
,
bless
their
hearts
you're
in
the
right
place
.
Let's
take
a
look
at
the
data
,
keep
our
minds
open
and
maybe
,
just
maybe
,
maybe
,
challenge
a
few
myths
along
the
way
,
always
with
compassion
,
curiosity
and
a
touch
of
humor
.
Let's
plug
in
and
power
Endometriosis is Not Endometrium
Speaker 1
1:54
up
.
All
right
,
folks
,
buckle
up
to
your
laparoscopy
belts
,
because
today
we're
diving
into
a
research
reality
check
titled
Endometriosis
is
Not
Endometrium
Reviewing
the
Overrepresented
Utopic
Endometrium
and
Endometriosis
is
Not
Endometrium
Reviewing
the
Overrepresented
Utopic
Endometrium
and
Endometriosis
Research
.
It's
a
mouthful
,
yes
,
but
a
vibe
.
Think
.
Science
fair
meets
investigative
journalism
,
with
a
side
of
you
had
one
job
.
Speaker 1
2:17
So
what
did
these
researchers
do
?
Did
they
cure
endo
?
Not
quite
.
Did
they
develop
a
new
diagnostic
?
Also
no
,
what
they
did
do
was
look
through
122
publicly
available
research
data
sets
that
were
supposedly
about
endometriosis
and
found
drum
roll
,
nearly
half
of
them
weren't
even
studying
endotissue
.
Shocker
,
I
know
,
that's
right
.
Speaker 1
2:42
Scientists
out
there
are
claiming
to
study
endometriosis
while
using
tissue
from
inside
the
uterus
,
the
utopic
endometrium
,
as
a
stand-in
for
rogue
misbehaving
lesions
outside
of
it
.
That's
like
using
a
house
cat
to
study
tigers
Technically
related
,
but
also
very
much
nope
.
No
,
now
,
to
their
credit
,
this
team
wasn't
just
pointing
fingers
and
yelling
you
did
it
wrong
.
They
actually
mapped
out
why
this
matters
.
Endolesions
and
utopic
endometrium
don't
behave
the
same
biologically
,
molecularly
or
immunologically
.
So
using
the
wrong
tissue
means
we're
building
our
understanding
of
endometriosis
on
a
foundation
of
mulch
wet
mulch
with
glitter
on
it
.
Here's
the
kicker
.
Many
mislabeled
samples
weren't
even
intentional
scams
.
It's
just
that
the
research
world
kind
of
collectively
shrugged
and
said
close
enough
,
and
then
moved
on
to
publish
.
Meanwhile
patients
are
like
cool
,
can
I
get
relief
now
?
The
answer
is
maybe
,
but
only
if
your
lesions
behave
exactly
like
a
healthy
uterus
lining
so
unlikely
.
So
what
do
the
researchers
suggest
?
Study
actual
lesions
.
People
Use
better
labels
.
Be
specific
,
because
the
sooner
we
stop
confusing
endo
with
endo-ish
,
the
sooner
we
get
real
answers
and
real
solutions
.
It's
not
a
cure
,
it's
not
a
miracle
Heck
,
it's
not
even
a
new
drug
,
but
it
is
a
moment
of
scientific
accountability
.
And
if
we're
serious
about
helping
people
with
endo
,
that's
where
we
start
with
the
right
tissue
.
Endometriosis
is
not
endometrium
,
and
apparently
that's
news
.
While
we're
unpacking
studies
,
let's
unpack
this
one
as
well
Surgical Menopause Impact Study
Speaker 1
4:36
.
This
study
highlights
even
more
why
it's
important
that
we
understand
that
endometriosis
is
not
endometrium
,
because
we're
unpacking
the
study
with
a
title
that
sounds
like
a
polite
warning
label
but
actually
hits
like
a
plot
twist
Quality
of
life
of
patients
with
bilateral
oophorectomies
before
the
age
of
45
for
treatment
of
endometriosis
.
Speaker 1
4:56
In
plain
speak
,
what
happens
when
you
lose
both
ovaries
before
45
in
the
name
of
treating
endo
,
and
whether
your
quality
of
life
afterward
throws
a
celebration
or
files
a
complaint
?
The
researchers
followed
52
women
in
France
who
had
bilateral
oophorectomies
or
surgical
menopause
full
stop
before
they
age
45
.
They
were
about
40
at
the
time
of
surgery
and
43
when
surveyed
.
The
researchers
used
a
tool
called
MenQOL
,
menopause
Quality
of
Life
Questionnaire
,
to
ask
how
they
were
doing
.
Spoiler
,
they
were
surviving
,
but
thriving
not
so
much
.
The
worst
score
sexual
quality
of
life
they
averaged
4.77
.
And
vasomotor
symptoms
Hello
,
hot
flashes
and
night
sweats
at
4.01
.
Women
who
were
smokers
or
had
higher
BMI
fared
much
worse
.
Speaker 1
5:48
Strangely
,
hormone
replacement
therapy
didn't
seem
to
help
much
,
which
feels
like
someone
unplugging
the
fan
in
a
sauna
and
calling
it
fine
.
But
here's
the
real
kicker
this
wasn't
a
before
or
after
study
.
It
was
a
one-time
snapshot
.
So
we
don't
know
how
these
women
were
doing
before
surgery
and
we
definitely
don't
know
how
different
types
of
HRT
might
have
helped
if
better
tracked
.
It's
kind
of
like
showing
up
to
the
third
act
of
a
movie
and
trying
to
guess
what
the
heck
happened
in
act
one
.
Speaker 1
6:17
Also
,
no
control
group
,
no
comparison
to
endo
patients
who
didn't
have
their
ovaries
removed
Just
52
women
from
two
hospitals
in
Toulouse
.
So
while
it's
a
powerful
signal
flare
,
it's
not
a
definitive
map
.
And
that
missing
info
on
HRT
big
yikes
map
and
that
missing
info
on
HRT
Big
yikes
.
If
you're
going
to
evaluate
hormone
therapy
,
maybe
tell
us
what
,
how
much
or
for
how
long
.
Still
,
the
study
does
something
really
important
.
It
shines
a
spotlight
on
the
fallout
of
surgical
menopause
in
younger
endopatients
.
It
makes
a
case
for
pre-op
counseling
,
lifestyle
guidance
and
individualized
post-op
support
.
In
short
,
if
you're
going
to
yank
out
the
ovaries
,
we
better
show
up
afterwards
with
more
than
just
a
good
luck
.
Speaker 1
7:05
And
because
we're
on
the
pathway
of
understanding
pros
and
cons
of
endometriosis
and
the
studies
that
follow
them
,
we're
going
to
take
a
look
at
this
next
study
titled
the
Phenotype
and
Genetic
Association
Between
Endometriosis
and
Immunological
Disease
Try
saying
that
fast
,
20
times
Translation
.
This
study
looked
Endo and Immune System Connection
Speaker 1
7:24
at
how
endometriosis
might
be
linked
,
both
in
symptom
and
genetics
,
to
a
bunch
of
immune-related
conditions
and
,
spoiler
,
endo
didn't
come
alone
.
It
brought
a
whole
crowd
to
the
party
.
Using
data
from
a
massive
group
of
people
think
8,000
plus
with
endo
and
over
64,000
with
immune
conditions
researchers
found
that
people
with
endometriosis
were
way
more
likely
to
also
have
immune
or
inflammatory
conditions
like
rheumatoid
arthritis
,
multiple
sclerosis
,
celiac
disease
,
osteoarthritis
and
psoriasis
.
So
if
endo
feels
like
more
than
just
a
period
problem
,
that's
because
it
is
.
They
even
looked
at
genes
and
found
that
endometriosis
shares
some
of
the
same
genetic
patterns
with
these
immune
conditions
.
So
it's
not
just
coincidence
,
it's
written
in
code
.
In
fact
,
they
saw
signs
that
having
endo
might
increase
your
chances
of
developing
rheumatoid
arthritis
later
on
Not
dramatically
,
but
enough
to
raise
an
eyebrow
.
Speaker 1
8:26
Now
here's
the
thing
this
isn't
totally
new
news
.
Patients
have
been
saying
this
for
years
.
Smaller
studies
have
said
the
same
thing
,
but
what
this
research
does
is
add
some
serious
backup
.
It's
like
finally
getting
the
receipts
for
what
the
community
has
been
telling
the
doctors
forever
.
Endo
is
a
full
body
condition
,
not
just
something
that
messes
with
your
uterus
.
To
be
clear
,
having
endo
doesn't
mean
you're
guaranteed
to
get
these
other
illnesses
.
It
just
means
your
chances
are
higher
.
And
even
though
they
saw
some
genetic
links
,
your
lifestyle
,
environment
and
overall
health
still
play
a
huge
role
in
how
things
play
out
.
The
good
news
if
we
understand
how
endometriosis
overlaps
with
other
conditions
,
we
might
find
better
treatments
,
maybe
even
share
meds
or
research
between
them
.
This
study
found
a
few
specific
genes
that
could
be
helpful
starting
points
.
That's
promising
for
future
care
that
looks
at
your
whole
self
,
not
just
one
system
at
a
time
.
Speaker 1
9:25
Endometriosis
isn't
just
about
pelvic
pain
or
periods
.
It's
a
complex
condition
that's
connected
to
your
immune
system
and
it
deserves
care
that
reflects
that
.
This
study
gave
us
stronger
proof
of
what
many
of
us
have
known
all
along
and
that
,
my
friends
,
is
a
step
in
the
right
Childhood Trauma and Endo Correlation
Speaker 1
9:42
direction
.
What's
a
step
in
the
meh
direction
is
this
next
study
that
we're
going
to
take
a
look
at
,
titled
Adverse
Childhood
Experiences
and
the
Risk
of
Endometriosis
.
A
Nationwide
Cohort
Study
Sounds
intense
,
right
and
,
honestly
,
it
kind
of
is
.
Speaker 1
9:58
This
research
looked
at
over
1.3
million
Swedish-born
women
over
27
years
,
which
is
pretty
impressive
,
and
the
authors
concluded
that
things
like
prenatal
mental
illness
,
substance
use
,
being
raised
by
a
teen
parent
,
exposure
to
violence
,
instability
and
poverty
were
all
linked
to
higher
risk
of
being
diagnosed
with
endometriosis
,
and
the
more
childhood
adversity
someone
experienced
,
higher
that
risk
seemed
to
be
.
It's
giving
trauma
bingo
,
but
make
it
gynecological
.
Let's
start
with
the
good
stuff
.
This
study
had
size
on
its
side
more
than
a
million
people
.
That's
not
just
a
sample
.
It's
a
small
nation
.
It
also
reaffirmed
what
public
health
experts
already
know
Adverse
childhood
experiences
,
aces
can
have
long-term
health
impacts
.
Speaker 1
10:49
The
data
showed
a
dose-response
curve
,
meaning
the
more
adversity
someone
faced
,
the
higher
their
chances
of
receiving
an
endo
diagnosis
.
And
hey
,
studying
potential
risk
factors
for
endo
always
welcome
.
We
want
to
understand
the
disease
better
.
We
just
need
to
make
sure
we're
asking
the
right
questions
.
Here's
where
things
get
a
little
shaky
.
Correlation
is
not
causation
.
Yes
,
people
with
more
childhood
adversity
had
higher
rates
of
endometriosis
diagnosis
,
but
it
doesn't
mean
trauma
caused
the
disease
.
There's
a
huge
difference
between
having
more
interactions
with
the
healthcare
system
and
being
biologically
more
likely
to
develop
endo
.
People
with
ACEs
often
interface
more
with
medical
and
social
services
.
That
means
more
opportunities
to
get
diagnosed
,
not
necessarily
more
disease
.
The
study
lightly
nods
to
this
,
but
it
doesn't
explore
how
access
provider
bias
or
systemic
inequalities
might
shape
who
gets
recognized
and
treated
.
Speaker 1
11:50
Let's
talk
about
the
big
issue
how
this
study
could
be
misinterpreted
.
Saying
adversity
increases
risk
of
developing
endometriosis
makes
it
sound
like
trauma
is
the
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
road
before
and
it
set
endometriosis
research
back
decades
.
And
can
we
talk
about
what
this
study
doesn't
mention
,
like
the
cases
of
endometriosis
found
in
cisgender
men
and
fetal
tissue
?
Those
alone
poke
giant
holes
in
the
idea
that
childhood
trauma
causes
endo
.
Speaker 1
12:28
Pain
isn't
always
rooted
in
psychology
and
endo
definitely
isn't
.
The
study
also
overlooks
one
key
possibility
Many
people
with
trauma
histories
are
more
likely
to
be
believed
when
they
describe
pain
,
or
maybe
they're
seen
by
specialists
more
often
,
or
maybe
their
records
include
more
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
little
shaky
leap
.
And
while
the
authors
do
admit
ACEs
might
increase
pain
severity
and
likelihood
of
seeking
care
,
they
tuck
that
critical
nuance
way
down
in
the
fine
while
the
headline
runs
wild
with
trauma
equals
endo
.
To
be
clear
,
aces
matter
.
Speaker 1
13:19
The
long-term
health
effects
of
trauma
deserves
attention
,
but
using
them
to
explain
a
disease
as
complex
and
biologically
driven
as
endometriosis
is
like
trying
to
explain
a
hurricane
by
blaming
the
wind
chimes
.
It's
simplistic
,
misleading
and
distracts
from
a
more
urgent
question
,
like
why
we
still
don't
have
widely
available
diagnostic
tools
,
better
treatments
or
sufficient
funding
.
We
need
research
that
focuses
on
genetics
,
immune
system
dysfunction
,
environmental
exposure
,
endocrine
disruption
,
actual
mechanisms
and
a
healthcare
system
that
recognizes
systemic
bias
,
not
one
that
confuses
pathology
with
personal
history
.
Well
,
Empowering Through Research Literacy
Speaker 1
14:00
that's
a
wrap
on
today's
deep
dive
.
I
hope
this
episode
helped
make
all
that
research
feel
a
little
less
intimidating
and
a
lot
more
empowering
,
because
understanding
the
data
,
really
understanding
it
,
puts
the
power
back
in
your
hands
,
whether
it's
recognizing
what's
solid
science
,
what's
still
evolving
and
what
just
doesn't
quite
add
up
.
Speaker 1
14:21
The
more
informed
we
are
,
the
more
equipped
we
are
to
advocate
for
ourselves
,
for
others
and
for
better
care
in
the
endometriosis
space
.
So
if
you're
walking
away
today
with
even
one
new
insight
and
one
moment
of
clarity
,
that's
a
win
,
and
if
it
sparks
a
little
fire
in
you
to
push
for
change
or
ask
bigger
questions
in
your
own
care
,
even
better
.
Remember
,
you
don't
have
to
be
a
researcher
to
understand
your
body
or
demand
better
.
You
just
have
to
stay
curious
,
stay
courageous
and
keep
showing
up
,
because
change
starts
with
awareness
and
awareness
starts
here
.
Until
next
time
,
continue
advocating
for
you
and
for
others
.
Bye
.