Send us a text with a question or thought on this episode ( We cannot replay from this link)
As the year winds down and the holiday season approaches, take a moment to recharge with our Endo Year Reflection series. This special segment looks back on the most impactful moments and insights of the year, offering a deep dive into the resilience, grit, and unwavering determination of endometriosis advocates. In Episode 78, I sit down with Casey Berna, a patient, advocate, and licensed social worker, who shares powerful perspectives on the mental health challenges faced by those living with endo and the overlooked role of support systems in this journey.
In Episodes 79 and 80, I chat with Jen Moore, a dedicated advocate from the UK, about the barriers to care, the shocking lack of medical curiosity around endometriosis, and her inspiring project, They Said What. These conversations highlight the urgent need for better education, diagnosis, and treatment for endometriosis and other chronic illnesses.
Join us for these heartfelt discussions and gain insight from two of the most passionate voices in the endometriosis community. Subscribe now and don’t miss the next installment of our Endo Year Reflection series, where we continue to push for change and better care for those living with chronic illness.
Website endobattery.com
Speaker 1
0:02
Welcome
to
EndoBattery
,
where
I
share
my
journey
with
endometriosis
and
chronic
illness
,
while
learning
and
growing
along
the
way
.
This
podcast
is
not
a
substitute
for
medical
advice
,
but
a
supportive
space
to
provide
community
and
valuable
information
,
so
you
never
have
to
face
this
journey
alone
.
We
embrace
a
range
of
perspectives
that
may
not
always
align
with
our
own
.
Believing
that
open
dialogue
helps
us
grow
and
gain
new
tools
always
align
with
our
own
.
Believing
that
open
dialogue
helps
us
grow
and
gain
new
tools
.
Join
me
as
I
share
stories
of
strength
,
resilience
and
hope
,
from
personal
experiences
to
expert
insights
.
I'm
your
host
,
alana
,
and
this
is
IndoBattery
charging
our
lives
when
endometriosis
drains
us
.
Welcome
back
to
IndoBattery
.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table
.
Speaker 1
0:45
This
year
is
wrapping
up
fast
and
Christmas
is
right
around
the
corner
.
Whether
you're
soaking
up
the
holiday
joy
or
racing
through
a
never-ending
list
of
last-minute
to-dos
,
I'm
here
to
offer
you
a
quick
recharge
With
the
EndoYear
Reflection
Series
.
This
special
segment
takes
a
look
back
at
some
of
the
most
impactful
moments
and
profound
insights
from
the
past
year
,
those
moments
that
make
you
pause
and
think
wow
,
that
hit
home
.
What
never
fails
to
inspire
me
is
the
resilience
,
grit
and
unwavering
determination
of
advocates
.
In
episode
78
,
I
sat
down
with
Casey
Berna
,
an
incredible
individual
who
wears
many
hats
patient
advocate
and
licensed
social
worker
.
Casey
is
dedicated
to
guiding
others
through
the
ever-changing
journey
of
endometriosis
care
.
To
say
this
journey
is
difficult
is
an
understatement
.
One
key
point
Casey
brought
up
is
the
staggering
mental
health
challenges
faced
by
those
living
with
endo
.
For
those
of
us
walking
this
path
,
it's
not
surprising
,
but
the
severity
might
be
.
Here's
a
clip
that
truly
captures
her
perspective
.
Speaker 2
1:48
You
know
patients
who
are
feeling
a
lot
of
anxiety
.
I
think
I
forget
what
the
statistic
is
,
but
a
lot
of
patients
with
endometriosis
experience
anxiety
,
depression
and
also
sometimes
suicide
ideations
.
So
I
think
that's
also
a
really
big
challenge
for
patients
is
having
those
challenges
like
on
top
of
chronic
pain
,
although
they're
often
like
woven
together
and
interconnected
.
You
know
,
finding
them
other
multidisciplinary
care
is
really
hard
,
like
finding
them
a
pelvic
floor
therapist
in
town
who
like
understands
.
So
I
mean
,
I
think
that's
just
like
some
of
the
challenges
that
a
lot
of
patients
that
I
see
face
for
sure
.
Speaker 1
2:28
As
Casey
highlights
,
the
challenges
don't
end
with
the
patients
.
Living
with
endo
is
a
shared
experience
,
and
support
systems
whether
they're
partners
,
family
members
or
friends
often
bear
a
significant
emotional
load
.
They're
not
just
bystanders
,
they're
co-advocates
navigating
this
uphill
battle
alongside
us
,
yet
their
role
is
often
overlooked
.
Casey's
perspective
on
this
left
me
reflecting
deeply
.
Speaker 2
2:53
I
think
,
just
as
patients
feel
isolated
,
the
support
people
also
feel
incredibly
isolated
because
society
does
a
really
good
job
in
sort
of
having
awareness
around
other
diseases
and
illnesses
.
Like
you
know
,
if
your
partner
has
cancer
it's
really
horrible
.
But
I
feel
like
then
the
community
like
for
example
,
recently
someone
in
my
neighborhood
was
diagnosed
with
like
a
terrible
cancer
and
the
neighborhood
,
everyone
came
together
,
everyone's
supporting
the
family
,
even
for
things
like
the
flu
.
Folks
in
the
community
know
to
drop
off
soup
,
they
know
to
leave
it
at
the
doorstep
,
like
can
I
go
food
shopping
for
you
?
But
a
lot
of
things
with
endometriosis
and
infertility
or
pregnancy
loss
,
folks
don't
know
what
endometriosis
is
.
A
lot
of
the
times
they
don't
know
how
to
help
and
often
the
person
not
only
the
patient
but
the
support
people
going
through
it
there
isn't
that
sort
of
rallying
that
like
automatically
happens
,
like
for
some
other
things
,
or
that
understanding
of
needs
.
So
it
absolutely
can
make
a
partner
feel
incredibly
isolated
and
I
think
anytime
they
can
reach
out
,
as
Sally
Sorrell
with
the
enemy
choices
summit
I
think
it's
still
on
their
YouTube
page
they
have
something
called
like
how
to
support
a
loved
one
and
we
interviewed
it
was
less
Henderson
and
their
partner
.
Speaker 2
4:17
It
was
like
a
mom
and
a
daughter
and
I
think
it
was
like
another
patient
and
her
husband
,
like
it
was
a
group
of
people
and
we
sort
of
interviewed
them
all
and
it's
a
great
resource
for
you
know
,
partners
or
loved
ones
out
there
to
sort
of
listen
so
that
they
don't
feel
alone
and
they
don't
feel
so
isolated
.
And
I
wish
you
know
a
lot
of
my
patients
.
I
was
like
what
if
,
like
,
your
family
had
gone
to
therapy
to
understand
this
better
,
to
be
able
to
support
you
better
,
like
how
much
better
would
you
feel
?
And
often
it's
a
lot
better
.
You
know
,
like
having
that
belief
and
that
support
and
that
foundation
can
really
be
life
changing
for
a
lot
of
patients
who
it's
just
like
another
obstacle
if
family
members
don't
know
how
to
be
present
or
be
supportive
if
family
members
don't
know
how
to
be
present
or
be
supportive
.
Speaker 1
5:07
From
one
amazing
advocate
to
another
in
episodes
79
and
80
,
I
had
the
privilege
of
sitting
down
with
Jen
Moore
,
a
tireless
advocate
from
the
UK
.
Jen
not
only
validated
much
of
what
Casey
shared
,
but
also
shed
light
on
the
additional
barriers
to
care
and
advocacy
across
the
pond
.
What
stood
out
most
in
our
conversation
was
the
shared
frustration
over
the
lack
of
curiosity
for
medical
providers
.
Much
like
Alison
Bontempo
alluded
to
,
jen
described
how
often
patients
are
dismissed
with
comments
like
your
scans
look
fine
.
As
though
that's
the
end
of
the
story
.
There
is
no
curiosity
in
healthcare
.
Speaker 3
5:37
From
my
personal
experience
and
the
experience
of
thousands
of
others
I've
spoken
to
,
there's
no
.
I
mean
I
know
there
are
individuals
who
are
like
this
,
but
as
a
whole
there
is
no
.
I
don't
know
,
but
let
me
find
out
for
you
.
Or
I'm
not
sure
,
but
I
know
a
great
person
who
will
.
So
let
me
put
you
in
touch
.
Or
even
let's
get
to
the
bottom
of
this
,
because
it
might
not
be
that
your
scan
might
be
clear
,
but
something's
clearly
going
wrong
.
So
let's
get
to
the
bottom
of
this
,
because
it
might
not
be
that
your
scan
might
be
clear
,
but
something's
clearly
going
wrong
.
So
let's
get
to
the
bottom
of
it
.
Speaker 3
6:04
And
that
seems
to
be
missing
from
pretty
much
all
of
the
healthcare
practitioners
that
I've
spoken
to
over
the
last
22
years
.
Yeah
,
and
I
don't
know
why
.
I
speak
to
the
clinical
school
at
Cambridge
University
a
lot
,
because
I'm
working
with
it
on
a
project
with
them
there
and
it's
something
they're
really
trying
to
instill
.
But
what
we're
kind
of
not
sure
is
what
happens
once
they
leave
university
and
then
there's
something
that
drops
off
,
and
whether
that's
stress
budget
resource
,
we
don't
know
.
But
there
definitely
needs
to
be
something
to
discover
that
,
because
it's
just
not
not
there
.
It's
almost
like
oh
,
your
scan's
clear
,
off
you
go
.
Or
that
blood
test
is
fine
,
you're
good
like
there's
no
.
So
why
are
you
in
that
much
pain
?
Why
are
you
losing
that
much
blood
?
Speaker 1
6:52
there's
just
no
questions
and
it's
yeah
,
it's
definitely
a
contributing
factor
to
the
delays
I
think
j
Jin
also
emphasized
how
this
lack
of
curiosity
stems
from
a
glaring
gap
in
education
.
If
some
of
the
world's
top
medical
schools
aren't
teaching
about
endometriosis
,
how
can
we
expect
providers
to
diagnose
or
treat
it
effectively
?
Speaker 3
7:12
This
was
both
sobering
and
infuriating
to
reflect
on
,
you
know
when
it
comes
to
our
bodies
,
women's
bodies
,
girls'
bodies
,
bodies
with
endometriosis
.
When
it
comes
to
our
bodies
,
women's
bodies
,
girls'
bodies
,
bodies
with
endometriosis
,
that
you
know
they're
not
designed
to
fit
into
the
system
.
That
just
sees
it
as
a
period
problem
,
which
we
know
categorically
isn't
.
But
that's
the
way
it's
seen
and
unfortunately
it's
not
even
really
taught
in
our
clinical
schools
for
future
doctors
.
That's
the
project
that
I'm
working
on
with
Cambridge
University
is
to
get
endometriosis
formally
onto
their
medical
school
curriculum
,
because
that's
meant
to
be
like
one
of
our
top
universities
,
one
of
the
,
you
know
,
leading
ones
in
the
world
,
and
it's
adjacent
to
one
of
our
leading
hospitals
in
the
UK
and
one
of
our
leading
biomedical
research
campuses
in
the
UK
,
and
yet
they
don't
teach
anything
about
endometriosis
,
and
it's
so
.
If
we
don't
even
have
our
doctors
knowing
what
it
is
and
how
to
treat
it
,
what
hope
do
we
have
?
Right
,
you
know
,
we're
kind
of
like
how
?
Speaker 1
8:11
do
you
even
begin
?
One
moment
from
my
conversation
with
Jen
that
I'll
never
forget
is
when
she
shared
a
story
about
spending
three
days
on
a
floor
and
we
all
know
how
challenging
that
is
Combing
through
medical
textbooks
,
only
to
find
information
on
endometriosis
severely
lacking
.
It's
a
scene
so
many
of
us
can
relate
to
the
desperate
search
for
answers
where
there
seems
to
be
none
.
Speaker 3
8:34
I
actually
went
and
sat
in
the
University
of
Cambridge
Medical
Library
.
I
went
and
sat
in
there
and
they
have
a
whole
gynecology
stack
and
I
sat
on
the
floor
in
between
these
two
stacks
and
I
looked
in
every
single
book
,
every
single
one
.
There
was
a
lot
.
It
took
me
like
three
days
and
I
can
count
on
one
hand
the
number
that
had
correct
definitions
of
endometriosis
.
Three
days
worth
of
books
,
one
hand
.
And
out
of
those
,
I
think
am
I
right
in
saying
only
one
?
I'm
pretty
sure
it's
only
one
Then
went
on
to
give
correct
treatment
options
.
So
even
the
other
ones
that
had
the
correct
definition
.
They
then
went
on
to
give
misinformation
about
how
to
treat
it
.
They
went
on
to
say
a
hysterectomy
is
a
cure
.
There
was
one
book
in
this
whole
entire
library
and
the
hysterectomy
doesn't
solve
like
thoracic
endometriosis
.
Speaker 3
9:30
It
doesn't
solve
diaphragmatic
or
any
it
doesn't
solve
it
,
or
bowel
or
bladder
or
any
,
I
mean
,
unless
you
have
it
on
your
uterus
somewhere
on
the
outside
,
it's
not
solving
it
.
Speaker 1
9:43
Jen's
experience
,
coupled
with
the
countless
stories
patients
have
shared
with
her
about
dismissive
or
downright
absurd
comments
from
providers
,
led
her
to
create
the
project
.
They
Said
what
?
And
I
have
to
kind
of
say
it
that
way
because
I
just
kind
of
feel
like
they
said
what
you
all
know
.
If
you've
ever
been
told
something
outrageous
by
a
medical
professional
,
you'll
feel
seen
in
this
very
clip
so
it's
called
.
Speaker 3
10:08
They
said
what's
project
and
that's
the
handle
on
and
tiktok
although
I
haven't
actually
done
anything
with
tiktok
yet
um
,
and
then
you
can
also
access
it
on
my
website
,
which
is
genmore
forward
slash
dot
.
Co
dot
.
Uk
forward
slash
.
They
said
what
project
and
it's
at
the
moment
we're
in
collation
stage
,
so
we
are
gathering
all
of
these
experiences
of
women's
health
dismissal
,
gaslighting
,
just
anything
across
all
of
women's
health
,
so
menopause
,
menstruation
,
anything
,
and
uh
,
yeah
.
So
then
when
we've
done
that
,
we
will
collate
it
all
,
make
it
into
a
report
.
Speaker 3
10:40
We're
also
working
with
psychologists
to
create
resources
for
people
that
are
going
through
medical
gaslighting
because
,
like
we
said
earlier
,
it's
just
trauma
upon
trauma
upon
trauma
upon
trauma
and
everybody
has
their
breaking
point
.
So
it
was
really
important
to
us
that
we
um
,
we
created
some
resources
as
well
for
people
that
are
going
through
this
,
and
then
we
will
also
create
recommendations
of
how
we
can
start
to
chip
away
at
that
in
the
future
.
But
yeah
,
the
name
actually
came
from
my
friend
,
because
when
I
Told
her
,
I
sent
her
a
voice
note
about
the
comment
I
told
you
a
minute
ago
about
the
environmental
impact
and
she
literally
sent
one
back
to
me
being
like
hey
,
sen
what
.
And
then
she
was
so
angry
about
it
and
I
was
like
that's
a
really
cool
name
and
so
yeah
,
she's
a
graphic
designer
,
so
she
designed
it
all
for
me
and
stuff
.
So
yeah
,
it
came
from
my
friend's
outrage
.
Speaker 1
11:28
What
struck
me
most
about
both
Casey
and
Jen
is
their
passion
and
drive
to
change
the
narrative
around
endometriosis
.
Their
stories
are
relatable
,
their
advocacy
is
inspiring
and
their
determination
is
contagious
.
If
you
haven't
already
,
I
encourage
you
to
listen
to
these
episodes
episodes
78
with
Casey
and
episodes
79
and
80
with
Jen
on
your
favorite
streaming
platforms
,
and
don't
forget
to
subscribe
so
you
get
notification
of
when
the
next
endo
year
reflection
episode
arrives
.
Thank
you
for
taking
the
time
to
sit
at
the
table
with
me
today
.
I'm
convinced
that
advocates
like
Casey
and
Jen
are
the
momentum
for
change
in
the
fight
against
standard
endometriosis
care
and
other
chronic
illnesses
.
Their
work
and
their
courage
remind
me
why
this
fight
is
so
worth
it
.
We
deserve
better
care
,
we
deserve
better
answers
,
and
together
we
can
push
for
that
change
.
Until
next
time
,
continue
advocating
for
you
and
for
those
that
you
love
.
Thank
you
.