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In this episode of Endo Battery Fast Charged, we dive into the ongoing delays in endometriosis diagnosis, emerging imaging tools like transvaginal ultrasound for superficial endometriosis, and how advocacy is shifting the standard of care.
Learn why most patients see up to 7 doctors and face years of dismissal before a diagnosis—and how that delay worsens pain and outcomes. We explore the latest research on imaging, the importance of recognizing all types of endometriosis, and why collaborative, patient-centered care is essential.
Featuring expert insights and patient advocates like Heather Guidone and Jenneh Rishe, this episode is a must-listen for anyone navigating endo or supporting someone who is.
Links to articles:
Collaboration is key in managing endometriosis
“Road to Diagnosis: Stomach Pain and Other Symptoms My Endometriosis Was Causing”
Website endobattery.com
Introduction to EndoBattery Fast Charged
Alanna
0:01
Welcome
to
Endo
Battery
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
Endo
Battery
Fast
Charged
charging
and
empowering
your
life
with
knowledge
.
Welcome
to
Endo
Battery
Fast
Charged
,
the
segment
where
we
power
through
the
latest
research
and
stories
that
actually
matter
when
you're
living
with
endo
or
chronic
illness
,
and
we
do
it
without
the
jargon
overload
or
the
eye-glaze-inducing
data
dumps
.
Today
we're
diving
into
some
big
ones
why
diagnosis
still
takes
forever
,
how
imaging
is
evolving
and
the
not-so-fun
trifecta
of
superficial
,
cystic
and
deep
endotypes
,
plus
a
moving
piece
from
an
advocate
that
will
hit
you
right
in
the
pelvic
floor
.
And
don't
worry
,
we
know
correlation
does
not
equal
causation
.
If
it
did
,
eating
chocolate
would
cure
endo
and
we'd
all
be
pain-free
and
very
,
very
happy
.
Let's
plug
Heather Guidon's Collaborative Approach to Endo
Alanna
1:17
in
.
You
know
we've
reached
a
certain
level
of
chronic
illness
.
Enlightenment
when
a
medical
journal
article
starts
to
feel
like
a
diary
.
In
Heather
Guidone's
piece
,
Collaboration
is
Key
to
Managing
Endometriosis
.
She
doesn't
just
speak
truth
,
she
practically
shouts
it
in
a
gentle
,
compassionate
tone
that
every
endo
patient
wishes
their
doctor
had
.
It's
part
personal
story
,
part
rallying
cry
and
100%
confirmation
that
no
,
you're
not
just
unlucky
or
overly
sensitive
.
You're
managing
a
complex
condition
that
needs
more
than
a
heating
pad
and
vague
encouragement
.
Heather
drops
what
might
be
the
most
refreshing
minder
in
modern
gynecology
you
don't
treat
endo
in
a
vacuum
.
It's
not
a
one
doctor
and
done
kind
of
vibe
.
No
,
this
thing
requires
a
full
on
team
,
preferably
one
that
actually
knows
what
endometriosis
is
.
Shocking
.
I
know
.
We're
talking
gynecologists
,
pain
specialists
,
therapists
,
nutritionists
and
,
most
importantly
,
you
yes
,
you
,
the
person
who's
been
explaining
their
symptoms
like
it's
a
TED
talk
nobody
asked
for
at
every
appointment
for
the
last
10
years
.
And
here's
where
it
gets
both
touching
and
kind
of
hilarious
in
a
laugh
,
so
you
don't
cry
.
Kind
of
way
you
become
the
case
manager
of
your
own
body
.
You're
chasing
down
referrals
,
coordinating
providers
like
you're
directing
a
Broadway
production
and
trying
not
to
lose
your
mind
when
someone
asks
you
if
you've
tried
hot
yoga
.
The
truth
is
,
healing
takes
a
village
,
but
too
many
of
us
have
had
to
build
that
village
from
scratch
,
using
nothing
but
determination
,
and
a
decent
support
group
.
But
the
core
of
what
Heather's
saying
isn't
just
about
logistics
,
it's
about
dignity
.
When
the
collaboration
happens
and
the
right
providers
work
with
you
instead
of
talking
at
you
,
something
amazing
occurs
.
You
get
to
reclaim
parts
of
your
life
that
Endo
tried
to
steal
.
That's
not
just
medicine
,
that's
empowerment
.
So
if
anyone's
told
you
lately
you're
doing
an
incredible
job
navigating
something
that
should
be
a
group
effort
but
too
often
feels
like
a
solo
mission
,
let
this
be
your
reminder
to
advocate
for
collaboration
,
not
because
you're
difficult
,
but
because
you
deserve
care
that
sees
you
as
a
whole
person
,
not
just
a
pelvis
or
a
uterus
with
an
attitude
.
Alanna
3:44
Let's
The 10-Year Wait for Diagnosis
Alanna
3:45
talk
about
the
most
frustrating
aspect
of
endometriosis
care
the
never-ending
journey
to
diagnosis
.
According
to
a
2024
scoping
review
titled
Understanding
Diagnostic
Delay
for
Endometriosis
,
a
Scoping
Review
Using
the
Social
Ecological
Frame
framework
,
healthcare
for
Women
International
has
a
very
polite
but
firm
call
out
by
covering
the
fact
that
the
average
time
it
takes
to
get
diagnosed
with
endometriosis
is
,
as
many
of
us
know
,
10
years
.
Yes
,
that's
a
full
decade
of
pain
,
confusion
and
likely
a
search
history
that
screams
why
does
my
pelvis
hate
me
?
Patients
see
on
average
seven
different
providers
and
in
some
cases
,
symptoms
are
discussed
over
20
times
before
anyone
says
the
E-word
.
If
this
were
a
dating
app
,
we'd
be
swiping
left
on
the
entire
medical
system
.
The
review
took
a
deep
dive
into
diagnostic
delays
through
a
social
,
ecological
lens
,
which
basically
means
looked
at
this
mess
from
every
angle
personal
,
social
,
systemic
and
what
they
found
is
what
most
people
with
endo
have
been
yelling
into
the
void
for
years
.
Doctors
often
dismiss
symptoms
as
normal
.
The
word
dismissive
came
up
more
than
once
and
some
providers
even
thought
patients
were
making
it
up
and
here's
a
spoiler
alert
they
weren't
.
Alanna
5:15
It's
not
a
bad
period
problem
A
full
body
experience
of
chronic
inflammation
,
fatigue
and
feeling
gaslit
by
healthcare
.
Not
shockingly
,
the
wait
times
for
care
were
even
longer
depending
on
your
access
route
.
Public
healthcare
longer
waits
,
often
due
to
physical
access
barriers
like
limited
specialists
or
rural
locations
.
Private
care
speedier
,
but
with
hefty
financial
barriers
.
It's
a
bit
like
choosing
whether
you'd
rather
walk
barefoot
through
a
field
of
Legos
or
fork
over
your
savings
for
answers
.
You're
in
pain
either
way
.
Alanna
5:53
The
kicker
is
all
this
delay
makes
things
worse
,
literally
.
The
study
found
that
the
longer
the
wait
for
diagnosis
,
the
worse
the
pain
,
the
more
the
disease
spreads
and
the
higher
cost
,
not
just
for
the
person
suffering
but
for
the
entire
healthcare
system
.
Basically
,
ignoring
endometriosis
is
bad
math
and
worse
medicine
.
Early
diagnosis
equals
less
pain
,
fewer
comorbidities
and
a
fighting
chance
at
reclaiming
your
life
.
In
the
end
,
this
article
laid
out
a
strong
framework
to
start
changing
this
,
pointing
equals
less
pain
,
fewer
comorbidities
and
a
fighting
chance
at
reclaiming
your
life
.
In
the
end
,
this
article
laid
out
a
strong
framework
to
start
changing
this
,
pointing
to
system-wide
changes
,
better
provider
education
and
the
radical
idea
that
maybe
,
just
maybe
,
we
should
believe
Understanding Three Types of Endometriosis
Alanna
6:36
the
people
when
they
say
they're
in
pain
.
Imagine
that
.
Well
,
the
review
isn't
perfect
.
No
research
ever
is
.
It's
a
solid
,
evidence-based
mic
drop
demanding
that
we
stop
normalizing
suffering
and
start
taking
endometriosis
seriously
,
because
10
years
is
about
10
years
too
long
,
and
getting
this
diagnosis
can
be
even
more
challenging
.
That's
why
,
when
looking
at
this
next
article
titled
Diagnosis
of
Superficial
Endometriosis
on
Transvaginal
Ultrasound
by
Visualization
of
Peritoneum
of
Pouch
of
Douglas
came
in
with
a
bit
more
information
and
maybe
some
promising
insight
.
Alanna
7:16
When
it
comes
to
endometriosis
,
not
all
lesions
are
created
equal
,
which
would
be
fine
,
except
for
that
,
none
of
them
come
with
a
user
manual
and
most
like
to
hide
.
The
three
main
types
superficial
peritoneal
endometriosis
,
or
SPE
,
ovarian
endometriomas
,
or
OMA
,
and
deep
infiltrating
endometriosis
,
or
DIE
each
have
their
own
personality
,
if
you
will
.
Spe
is
the
most
common
form
,
affecting
up
to
80%
of
people
with
endo
.
These
lesions
live
on
the
surface
of
the
peritoneum
,
which
sounds
simple
enough
,
until
you
realize
they're
sneakier
than
a
cat
in
a
cardboard
box
.
Standard
imaging
often
misses
them
and
historically
you
need
a
laparoscopy
to
catch
them
in
the
act
.
But
hold
up
.
Alanna
8:05
2024
brought
us
some
exciting
news
with
this
article
.
It
showed
that
with
skilled
technique
and
a
little
patience
,
transvaginal
ultrasound
might
actually
spot
SPE
,
which
again
is
the
superficial
peritoneal
endometriosis
,
especially
in
the
pouch
of
Douglas
.
Yes
,
that's
a
real
place
in
your
pelvis
,
not
just
a
Scottish
pub
.
The
researchers
focused
on
identifying
subtle
signs
of
peritoneal
change
in
real
time
,
which
could
be
a
huge
step
forward
for
earlier
,
less
invasive
diagnosis
.
Translation
no
more
,
let's
just
wait
and
see
.
Will
symptoms
rage
on
unchecked
?
Then
there's
the
OMA
and
if
you
remember
,
that's
the
ovarian
endometriomas
,
aka
the
chocolate
cyst
,
not
the
fun
kind
,
these
are
filled
with
old
blood
,
not
ganache
.
These
cysts
usually
show
up
on
ovaries
and
often
play
tag
team
with
deep
endometriosis
,
making
them
a
bit
of
a
diagnostic
clue
with
deep
endometriosis
making
them
a
bit
of
a
diagnostic
clue
.
The
good
news
they're
more
likely
to
show
up
clearly
on
ultrasound
.
The
bad
news
.
They
often
mean
disease
is
more
advanced
and
can
be
linked
to
fertility
issues
and
painful
periods
that
feel
like
a
demolition
derby
on
your
pelvis
.
Alanna
9:18
Now
DIE
,
or
deep
infiltrating
endometriosis
or
DFE
,
depending
on
your
acronym
preference
is
the
heavyweight
bunch
.
This
type
burrows
deeper
than
five
millimeters
into
the
tissue
and
has
no
problem
invading
structures
like
the
bladder
or
the
bowel
.
It
can
actually
alter
anatomy
.
Yep
,
it's
that
serious
and
usually
needs
an
MRI
to
get
the
full
picture
.
Think
of
it
as
the
endo
equivalent
of
a
plot
twist
in
a
medical
drama
Hard
to
spot
,
easy
to
underestimate
and
very
impactful
.
And
because
endo
likes
to
keep
things
Interesting
,
these
types
can
overlap
like
a
Venn
diagram
from
the
heated
place
down
under
and
I
don't
mean
Australia
you
can
have
SPE
,
oma
or
die
all
at
once
.
Fun
right
Plus
extra
pelvic
endo
that
decides
to
pop
up
in
places
like
your
diaphragm
,
lungs
or
,
honestly
,
wherever
it
feels
like
it's
a
whole
body
disease
that
refuses
to
be
boxed
in
,
which
is
exactly
why
proper
imaging
,
skilled
interpretation
and
actually
listening
to
patients
is
so
vital
.
Because
,
when
it
comes
to
endo
,
seeing
literally
and
figuratively
is
believing
.
Jenna Resha's Powerful Patient Story
Alanna
10:32
Sometimes
stories
can
be
more
powerful
than
even
research
,
because
it's
the
lived
experience
,
it's
the
stories
that
are
told
from
people
who
have
gone
through
what
many
of
us
have
gone
through
.
And
,
you
know
,
sometimes
I
come
across
a
piece
that
just
stops
me
,
one
that
puts
into
words
what
so
many
of
us
have
felt
but
rarely
see
captured
in
such
an
honest
,
human
way
.
Jenneh
Rishe's
story
,
featured
in
health
.
com
,
is
exactly
that
.
She
takes
us
through
the
gut-wrenching
reality
of
living
with
a
disease
that
so
often
feels
invisible
.
Endometriosis
didn't
just
disrupt
her
life
,
it
hijacked
it
.
From
being
a
nurse
juggling
12-hour
shifts
while
silently
battling
unrelenting
pain
,
to
undergoing
nine
surgeries
before
finally
being
heard
.
Her
story
is
a
striking
reminder
of
just
how
loud
we
have
to
scream
before
a
medical
system
listens
.
But
what
makes
this
piece
so
powerful
isn't
just
the
pain
,
it's
the
purpose
Jenneh
found
through
it
.
She
didn't
just
survive
the
gaslighting
,
the
delays
and
the
trauma
.
She
turned
it
into
action
.
She
founded
the
Endometriosis
Coalition
,
using
her
voice
to
fight
for
others
who
are
still
searching
for
answers
in
a
system
that
too
often
tells
them
it's
just
a
bad
period
.
Alanna
11:49
If
you've
ever
doubted
your
pain
,
if
you've
ever
walked
out
of
a
doctor's
office
feeling
dismissed
,
or
if
you're
just
trying
to
understand
what
someone
you
love
is
going
through
,
please
read
this
.
Jenneh's
words
are
a
masterclass
in
advocacy
,
strength
and
the
brutal
beauty
of
refusing
to
be
silenced
.
Head
over
to
health
.
com
and
look
up
her
piece
titled
Road
to
Diagnosis
Stomach
Pain
and
Other
Symptoms
my
Endometriosis
Was
Causing
.
It's
more
than
a
story
,
it's
a
call
to
action
.
And
that's
a
wrap
for
the
fast
charge
.
Alanna
12:23
Today
,
if
your
brain
feels
a
little
more
powered
up
,
great
.
If
it
feels
slightly
fried
,
same
Closing Thoughts and Empowerment
Alanna
12:30
honestly
,
because
navigating
the
science
,
the
stats
and
the
lived
experience
of
endo
isn't
exactly
light
reading
.
But
knowledge
is
power
and
in
our
case
it's
also
pain
relief
,
validation
and
maybe
one
less
wild
goose
chase
around
the
medical
system
.
Remember
,
just
because
your
symptoms
are
common
doesn't
mean
they're
normal
,
and
just
because
something
shows
up
on
a
skin
or
doesn't
doesn't
mean
your
experience
is
any
less
real
.
We'll
keep
breaking
down
the
research
,
calling
out
the
delays
and
celebrating
the
people
,
pushing
the
conversation
forward
.
Until
then
,
hydrate
,
rest
when
you
can
and
maybe
eat
that
chocolate
,
not
because
it's
a
cure
,
but
because
you
freaking
deserve
it
.
Until
next
time
,
continue
advocating
for
you
and
for
others
.