Send us a text with a question or thought on this episode ( We cannot replay from this link)
When Jen Moore first experienced the agony of endometriosis and adenomyosis at just eleven years old, little did she know that her pain would ignite a fierce advocacy for global awareness and change. Join us at the table for an enlightening conversation with Jen, who candidly details her journey from suffering in silence to becoming a beacon of hope for countless individuals dealing with these often misunderstood conditions. Her poignant narrative is a testament to resilience, as she recalls facing a healthcare system fraught with dismissal and misunderstanding, and how her quest for validation evolved into a powerful movement with her project “They Said What?”.
Amidst Jen’s compelling story, we tackle the broader issues that underscore the patient-provider divide, especially in the realm of chronic illnesses like endometriosis. We dissect the trauma inflicted by healthcare gaslighting and structural inefficiencies plaguing systems such as the NHS and U.S. insurance-based models that frequently prioritize cost over patient wellbeing. This episode isn’t just about the challenges; it’s an urgent call to action for comprehensive healthcare reform, the imperative inclusion of endometriosis education in medical curricula, and the provision of much-needed mental health support for those in the grips of this full-body disease. Tune in for an episode that promises not only to enlighten but also to empower in the face of chronic health battles.
Website endobattery.com
Endometriosis and Adenomyosis Stories
Speaker 1
0:03
Welcome
to
EndoBattery
,
where
I
share
about
my
endometriosis
and
adenomyosis
story
and
continue
learning
along
the
way
.
This
podcast
is
not
a
substitute
for
professional
medical
advice
or
diagnosis
,
but
a
place
to
equip
you
with
information
and
a
sense
of
community
,
ensuring
you
never
have
to
face
this
journey
alone
.
Join
me
as
I
navigate
the
ups
and
downs
and
share
stories
of
strength
,
resilience
and
hope
.
While
navigating
the
world
of
endometriosis
and
adenomyosis
,
from
personal
experience
to
expert
insights
,
I'm
your
host
,
alana
,
and
this
is
EndoBattery
charging
our
lives
when
endometriosis
drains
us
.
Welcome
back
to
EndoBattery
.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table
as
I'm
joined
by
my
guest
,
jen
Moore
,
for
a
raw
and
vulnerable
conversation
.
Speaker 1
0:52
Jen
is
an
Indo
warrior
who
,
through
her
journey
,
found
it
empowering
to
speak
up
and
build
community
.
With
the
help
of
Instagram
,
she's
become
a
passionate
endometriosis
advocate
,
championing
for
change
not
only
in
the
UK
but
around
the
world
.
Jen
recently
started
her
next
project
in
advocacy
,
called
they
Said
what
?
Please
help
me
in
welcoming
Jen
Moore
.
Thank
you
,
jen
,
so
much
for
joining
me
today
and
I'm
excited
for
our
conversation
.
You
are
the
first
person
from
the
UK
that
has
joined
me
.
Speaker 2
1:22
I
am
honored
,
doubly
honored
.
Thank
you
for
having
me
.
Speaker 1
1:25
Of
course
,
I
was
so
excited
that
we
were
able
to
get
in
contact
and
to
be
able
to
do
this
because
for
me
,
I
have
a
fairly
good
sense
of
what's
going
on
here
in
the
US
and
people's
stories
.
But
I've
been
following
your
story
for
a
while
and
the
reason
I
felt
like
it
was
important
to
have
you
on
is
because
you
have
the
perspective
of
being
over
in
the
UK
having
to
deal
with
some
of
the
trying
issues
of
navigating
care
over
there
.
Speaker 1
1:55
And
then
adversely
.
Your
story
is
impactful
in
and
of
itself
.
Can
you
fill
us
in
on
some
of
your
journey
,
Sure
?
Speaker 2
2:05
Gosh
,
never
know
where
to
start
with
that
.
So
my
journey
started
when
I
was
11
,
along
with
my
first
period
,
like
so
many
of
us
,
and
it
was
just
.
It
was
awful
from
the
start
.
I
mean
,
I
never
knew
fully
what
to
expect
,
because
it's
your
first
one
,
but
I
definitely
did
not
expect
what
happened
.
I
was
in
so
much
pain
,
losing
so
much
blood
.
I
couldn't
stand
up
straight
.
I
was
just
curled
up
on
the
floor
of
my
parents
bedroom
.
It
was
horrific
from
day
one
.
Speaker 2
2:35
So
my
mum
took
me
to
the
doctors
and
they
basically
said
you
know
,
she's
young
,
this
will
smooth
itself
out
,
she'll
be
fine
.
It
didn't
,
um
.
So
again
she
took
me
back
and
again
they
said
look
,
she's
really
young
,
they're
gonna
even
themselves
out
.
She
just
has
painful
,
heavy
periods
.
They're
perfectly
normal
and
you
know
,
if
you
really
want
to
do
something
,
here's
the
pill
.
This
will
sort
her
out
,
she'll
be
fine
.
So
I
went
on
the
pill
aged
around
12
,
I
think
.
Um
,
so
I
was
very
young
when
I
went
on
the
pill
and
there
,
12
,
I
think
.
So
I
was
very
young
when
I
went
on
the
pill
and
there
was
no
follow-up
,
there
was
no
investigation
,
there
was
no
even
try
the
pill
and
come
back
and
have
a
review
in
a
few
months'
time
.
It
was
literally
just
here's
the
pill
,
off
you
go
.
And
that
was
my
story
for
22
years
.
Speaker 2
3:19
Pretty
much
Every
single
time
I
had
a
period
or
a
bleed
during
those
22
years
it
was
horrific
.
It
was
like
horror
movie
scenes
in
the
bathroom
pain
so
bad
that
I
would
vomit
or
pass
out
.
I'd
be
bed
bound
for
a
few
days
every
month
and
,
of
course
,
I
would
go
back
to
the
doctors
.
So
many
people
now
are
like
oh
,
why
didn't
you
say
something
?
I
didn't
know
you
were
suffering
so
much
I
did
,
I
did
.
Nobody
goes
for
22
years
and
doesn't
say
something
.
I
didn't
know
you
were
suffering
so
much
I
did
,
I
did
.
Nobody
goes
for
22
years
and
doesn't
say
something
.
But
every
time
I
did
,
again
it
was
.
The
painful
periods
are
normal
.
Why
are
you
so
special
?
Speaker 2
3:54
Half
the
world
deals
with
this
.
You
know
I
had
one
woman
when
I
said
that
it
was
stopping
me
from
doing
my
job
every
month
and
a
female
doctor
said
to
me
well
,
I'm
on
my
period
right
now
.
Of
course
,
you
can
work
on
your
period
.
Okay
,
that's
great
for
you
,
but
that
wasn't
for
me
.
And
yeah
,
that
went
on
for
22
years
until
I
think
it
must
have
been
a
bit
of
lockdown
madness
this
is
the
only
way
I
can
really
justify
this
is
that
during
lockdown
I
realized
that
I
had
never
experienced
a
natural
cycle
,
really
ever
since
I
was
12
.
I
had
no
idea
what
my
cycle
was
or
what
it
felt
like
to
have
a
cycle
.
So
I
thought
,
well
,
let's
give
that
a
go
.
So
I
just
stopped
.
I
stopped
taking
the
pill
completely
and
again
I
wasn't
sure
what
I
was
expecting
,
but
it
definitely
wasn't
.
Speaker 2
4:46
But
within
two
to
three
cycles
,
the
symptoms
that
I
used
to
feel
,
just
within
my
period
,
they
were
every
single
day
and
I
was
basically
crawling
to
the
bathroom
from
my
bed
,
screaming
in
pain
.
I
had
to
give
up
my
business
,
which
I'd
run
for
eight
,
over
eight
years
.
It
just
got
to
a
point
where
I
was
using
mobility
aids
because
my
legs
would
give
way
and
it
was
just
in
so
much
pain
.
It
was
just
.
My
life
was
completely
pain
.
And
you
know
,
like
in
the
Barbie
movie
where
Ken's
life
is
beach
,
my
life
was
pain
,
yeah
,
and
it
got
to
a
point
where
I
was
just
like
,
right
,
no
,
I
cannot
live
like
this
anymore
.
I
genuinely
cannot
see
a
life
beyond
this
.
Speaker 2
5:26
So
I
rang
up
my
GP
.
It
was
when
you
couldn't
actually
go
to
see
someone
still
,
because
it
was
all
over
the
thing
and
I'd
written
everything
out
,
like
absolutely
every
symptom
that
I
was
feeling
anywhere
in
my
body
.
Didn't
matter
if
I
thought
it
was
related
.
I
just
wrote
it
all
down
on
piece
of
paper
.
It
was
like
two
sides
of
a
four
and
I
just
read
it
out
.
This
poor
woman
.
I
don't
think
I
even
gave
her
a
chance
to
read
,
let
alone
reply
to
anything
.
I
just
read
it
and
when
I
got
to
the
end
she
went
quiet
and
she
said
okay
,
I
think
we
need
to
sort
a
scan
,
um
,
because
that's
obviously
not
not
normal
,
right
?
So
I
had
a
scan
done
,
um
,
they
referred
me
and
I
went
for
my
scan
.
Speaker 2
6:02
It
was
a
transvaginal
ultrasound
scan
.
It
was
one
of
the
most
awful
medical
experiences
I've
ever
had
.
It
was
so
painful
.
The
person
performing
it
was
just
so
unsympathetic
and
was
literally
just
like
ramming
this
thing
around
in
that
because
she
couldn't
find
my
ovary
.
So
she
was
literally
like
jabbing
it
in
trying
to
find
the
ovary
,
was
literally
like
jabbing
it
in
trying
to
find
the
way
,
um
,
and
then
she
asked
me
to
go
and
empty
my
bladder
and
I
I
did
.
You
know
,
I
am
in
my
30s
,
I
thought
I
knew
how
to
empty
my
bladder
and
when
I
got
back
she
basically
told
me
off
.
She
had
a
go
at
me
and
said
I
told
you
to
empty
your
bladder
and
I
said
I
I
did
.
And
then
she
said
well
,
it's
not
completely
empty
,
do
you
not
know
how
to
use
the
bathroom
?
Oh
my
god
,
and
I
was
just
like
,
okay
,
so
that's
the
day
I
learned
I
had
bladder
retention
issues
and
that
scan
ultimately
came
,
came
back
clear
.
Speaker 2
6:52
I
got
a
text
on
half
five
on
a
Friday
evening
and
I
don't
know
about
over
in
the
states
,
but
over
here
you
cannot
get
a
hold
of
a
GP
at
that
time
on
a
Friday
.
They
have
all
gone
home
.
And
so
I
tried
to
make
this
text
said
,
um
,
that
it
was
an
abnormal
scan
and
I
need
to
call
them
sort
of
as
soon
as
possible
.
So
I
tried
ringing
.
They'd
closed
,
gone
home
for
the
weekend
.
Speaker 2
7:14
So
I
had
this
horrible
weekend
of
like
,
oh
my
god
,
what's
what's
happened
?
What's
wrong
on
the
scan
and
it
.
So
I
rang
on
Monday
morning
and
the
guy
was
like
,
oh
yeah
,
there's
,
there's
definitely
something
not
quite
right
,
but
no
further
action
is
needed
,
it's
fine
.
And
I
was
like
,
oh
okay
,
so
what
next
?
And
he
was
like
no
,
it's
,
it's
fine
,
no
further
action
needed
.
So
I
was
kind
of
just
like
pushed
off
into
the
ether
again
and
I'm
really
really
fortunate
not
everybody
over
here
is
fortunate
enough
to
do
that
but
my
parents
basically
said
no
,
not
having
it
very
private
,
and
we'll
cover
it
.
And
so
I
went
privately
for
a
scan
with
a
surgeon
and
there
was
some
question
marks
over
whether
it
could
be
cancer
based
at
that
time
.
So
I
went
to
see
a
gynecological
oncologist
and
he
performed
the
scan
and
he
was
the
first
person
who
actually
said
to
me
you've
got
endometriosis
and
also
adenomyosis
which
I
had
no
idea
what
it
was
at
the
time
,
but
unfortunately
now
I
know
better
.
Speaker 2
8:08
He
should
have
said
there's
no
cancer
.
Unfortunately
there's
these
things
off
you
go
to
a
great
person
who
specializes
in
these
.
But
instead
he
was
like
I
can
do
that
,
I
can
sort
you
out
,
it's
fine
.
So
he
performed
a
surgery
in
May
2022
.
Speaker 2
8:24
And
he
unfortunately
ablated
all
of
the
endometriosis
and
again
,
I
had
no
idea
at
the
time
.
I
was
not
told
the
differences
or
that
it
was
important
,
so
he
ablated
it
.
He
also
missed
a
huge
amount
of
endometriosis
,
including
like
an
eight
by
two
plaque
of
endo
that
had
wrapped
itself
around
my
ureter
and
was
choking
it
and
basically
putting
my
kidney
at
risk
of
kidney
death
.
But
he
missed
that
somehow
.
Um
and
he
also
put
he
was
very
,
very
insistent
that
he
would
put
the
Mirena
IUD
in
um
for
the
adenomyosis
pain
that
I
was
suffering
.
He
did
say
,
if
I
tried
it
,
I
didn't
like
it
wasn't
helping
,
that
we
could
then
talk
about
hysterectomy
.
So
I
said
,
fine
,
okay
,
try
it
Again
.
Speaker 2
9:06
I
didn't
really
know
what
I
do
now
and
after
that
surgery
I
was
still
in
so
much
pain
,
so
much
pain
.
I
think
I
ended
up
in
A&E
two
weeks
post-surgery
because
the
pain
was
just
through
the
roof
.
I
know
now
it's
because
everything
had
been
missed
.
When
I
had
my
post-op
with
him
,
I
said
all
of
this
and
he
said
to
me
Jen
,
jen
,
I'm
the
surgeon
,
I
went
to
medical
school
,
I
know
what
I'm
doing
,
you're
good
,
you're
good
.
And
I
said
,
okay
,
but
I'm
still
really
concerned
about
this
adenomyosis
pain
.
I
would
like
to
talk
about
the
hysterectomy
.
Speaker 2
9:40
No
,
no
no
no
,
no
,
no
,
no
,
no
,
adenomyosis
does
not
cause
this
much
pain
.
I
think
now
it's
a
little
bit
psychological
.
You
need
to
look
at
maybe
getting
you
some
therapies
and
also
being
aggressive
with
your
pain
relief
.
So
I
walked
out
of
there
and
I
was
furious
.
I
was
so
angry
but
I
thought
,
oh
my
God
,
this
person's
finally
believed
me
.
He
diagnosed
me
and
I
thought
he
was
kind
of
on
my
side
and
then
I
felt
like
I
was
back
at
square
one
and
it
was
just
so
,
so
frustrating
.
Um
.
Speaker 2
10:08
So
I
found
a
second
opinion
and
then
,
within
a
few
months
of
that
appointment
with
that
surgeon
,
the
second
surgeon
said
to
me
yeah
,
he
missed
a
lot
of
disease
.
There's
still
a
lot
of
disease
in
there
.
We
need
to
operate
.
Both
your
kidneys
are
now
at
risk
and
we'll
do
the
hysterectomy
because
that's
a
very
diseased
uterus
.
Um
,
so
that
happened
then
one
year
,
less
than
one
year
after
my
first
surgery
,
which
was
last
may
,
nearly
a
year
today
,
wow
,
um
,
and
then
,
yeah
,
so
that's
kind
of
where
,
medically
,
my
journey
.
Speaker 2
10:41
I
still
have
,
unfortunately
,
a
lot
of
problems
with
the
endometriosis
.
I
was
in
A&E
a
few
weeks
ago
because
of
it
,
um
,
and
I'm
sort
of
being
investigated
now
for
like
,
bowel
endo
and
bladder
endo
and
whether
all
these
things
are
back
.
But
it
,
yeah
,
it's
a
little
bit
more
difficult
once
you've
had
a
hysterectomy
.
I
don't
know
if
you
found
this
like
when
I
went
to
A&E
they
said
,
oh
,
it
can't
be
gynecological
though
,
because
you
don't
have
your
gynecological
organs
.
And
I'm
sat
there
being
like
you're
so
close
to
realizing
that
endocenters
should
not
be
in
gynecology
.
Speaker 2
11:14
Yes
,
um
,
so
yeah
,
that's
kind
of
my
medical
journey
really
,
and
it's
sort
of
in
between
all
of
that
,
I
set
up
an
account
because
I
,
like
we
all
do
felt
like
I
was
the
only
one
and
I
just
,
I
mean
,
I
felt
a
bit
sorry
for
my
husband
,
who
must
have
been
so
sick
of
me
talking
about
all
of
this
24
7
bless
it
.
So
I
set
it
up
to
try
and
find
other
people
in
the
same
situation
and
this
community
has
kind
of
bubbled
up
and
yeah
it's
.
I
want
to
support
them
and
validate
them
so
much
because
their
messages
are
just
so
so
powerful
and
haunting
at
the
same
time
and
they're
just
so
desperate
for
accurate
information
.
And
if
I
can
try
and
provide
that
,
because
it's
not
that
forthcoming
over
here
in
the
UK
then
I
will
try
and
do
that
.
So
,
yeah
,
I'd
say
that's
my
.
Speaker 1
12:09
I
don't
even
know
if
that
was
quick
but
I
was
going
to
say
that
was
my
quick
journey
,
but
I
don't
know
if
it
was
overly
fast
.
I
don't
think
anyone's
journey
is
all
that
quick
.
I
think
you
know
,
for
people
who
are
diagnosed
and
the
delay
in
diagnosis
there
can't
be
anything
quick
about
it
.
And
I
think
you
highlighted
something
so
prevalent
,
which
is
the
lack
of
knowledge
amongst
GPs
and
what's
the
lack
of
knowledge
amongst
healthcare
in
general
?
And
then
when
they
can't
figure
out
the
answer
,
it's
all
of
a
sudden
back
on
us
,
like
it
must
be
us
.
Speaker 2
12:43
Yeah
,
yeah
,
there
is
no
curiosity
in
health
care
.
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
Challenges in Healthcare Communication and Education
Speaker 2
13:13
to
the
bottom
of
it
.
Speaker 2
13:13
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
14:02
there's
just
no
questions
and
it's
yeah
,
it's
definitely
a
contributing
factor
to
the
delays
,
I
think
and
I
do
think
there's
that
calloused
piece
of
it
too
,
because
I
can't
imagine
for
those
who
are
repeatedly
unsure
of
what's
happening
.
They
don't
have
the
education
they
need
and
they're
hearing
these
people
come
in
and
out
of
their
office
with
the
same
issues
,
but
it's
all
in
their
head
.
This
can't
be
a
systemic
issue
at
all
.
It's
in
their
head
and
kind
of
like
emptying
your
bladder
.
It's
in
their
head
and
kind
of
like
emptying
your
bladder
.
There's
a
way
to
say
something
that
is
less
hurtful
and
less
triggering
than
it's
your
fault
.
And
I
think
that
we
do
hear
this
sometimes
from
providers
,
because
they
don't
know
how
else
to
communicate
what
they
don't
know
.
Speaker 2
14:53
Yeah
,
and
I
think
there's
a
little
bit
of
ego
in
that
.
I
think
medical
students
by
nature
are
very
competitive
,
very
driven
,
very
um
,
you
know
,
successful
and
intelligent
,
and
so
it's
almost
a
bit
of
an
affront
if
they
don't
know
something
.
It's
kind
of
like
and
I
get
that
,
I
do
get
that
.
You
know
,
I
hate
not
knowing
the
answer
to
something
,
but
then
I'll
go
away
and
find
out
it's
not
.
I
wouldn't
then
turn
it
on
the
other
person
,
but
unfortunately
what
we're
getting
is
that
I
know
gaslighting
is
thrown
around
a
lot
,
but
it
is
a
real
issue
in
the
medical
community
,
especially
with
conditions
like
endometriosis
,
and
it's
almost
using
those
tools
of
reflecting
it
back
onto
you
.
Speaker 2
15:30
It's
like
the
gaslighters
handbook
.
You
know
it's
very
victim
,
blamey
language
.
Why
didn't
you
speak
up
?
You
know
we
see
all
the
time
governments
promoting
their
plans
for
women's
health
care
and
it's
always
let's
educate
the
women
and
girls
.
Well
,
why
don't
we
educate
everybody
?
And
why
don't
we
educate
the
doctors
so
that
they
actually
know
what
these
conditions
are
and
how
to
deal
with
them
?
Because
we
are
speaking
up
,
we're
just
not
being
listened
to
,
believed
,
and
then
,
when
we
are
,
there's
not
the
appropriate
treatment
to
have
.
Speaker 2
16:01
So
it's
,
you're
right
,
it's
very
much
just
twisted
and
turned
back
onto
us
all
the
time
,
and
the
effect
of
that
is
that
we
start
gaslighting
ourselves
and
we
start
saying
maybe
it
wasn't
that
bad
,
maybe
I
just
have
a
low
pain
threshold
,
maybe
I'm
just
weak
,
you
know
,
and
it's
all
these
things
.
And
I
know
I
certainly
felt
like
that
,
especially
when
I
was
in
school
and
I
was
kind
of
the
only
girl
missing
class
because
of
my
period
.
It
was
just
sort
of
why
can't
I
just
deal
with
it
?
What's
wrong
with
me
?
And
I
started
to
think
there
was
something
wrong
with
my
head
rather
than
something
wrong
with
the
rest
of
my
body
.
It's
,
yeah
,
yeah
,
it's
a
real
tough
one
and
it's
very
deeply
ingrained
into
the
medical
system
and
I
don't
know
.
It's
actually
really
interesting
how
are
they
dealing
with
it
over
in
the
States
,
because
over
here
we
obviously
have
this
centralized
NHS
.
Speaker 1
16:52
You
know
,
I
think
in
some
ways
it's
very
similar
,
because
I
would
say
there
tends
to
be
a
subset
of
providers
who
lack
knowledge
and
who
don't
have
the
time
to
learn
more
or
have
the
desire
to
learn
more
,
and
so
I
think
that
it
can
be
very
similar
in
a
lot
of
ways
,
because
you
know
you
go
to
a
provider
here
and
they
take
your
insurance
.
Well
,
they're
booked
back
to
back
to
back
to
back
to
back
with
patients
,
so
they
get
15
minutes
in
the
exam
room
that
insurance
will
pay
,
and
so
they're
very
much
guided
by
the
dollar
bill
.
And
that
is
where
I
feel
like
a
lot
of
healthcare
goes
wrong
is
that
they
allow
the
dollar
bill
to
guide
the
moral
compass
and
ethics
of
medicine
.
And
that's
what's
so
tricky
about
this
disease
is
that
this
isn't
a
15-minute
consultation
.
This
isn't
a
15-minute
diagnosis
plan
.
This
isn't
a
15-minute
.
We
can
help
you
with
this
.
Help
you
with
this
.
This
is
a
hour
,
year
long
journey
,
years
.
I
mean
.
Speaker 1
18:03
It
takes
a
long
time
for
us
to
explain
our
cases
most
of
the
time
,
and
when
you
are
young
you
don't
know
how
to
explain
that
.
I
can't
imagine
.
I
look
back
at
when
I
was
15
and
missing
school
during
my
period
.
How
do
you
communicate
that
with
a
doctor
when
you
don't
understand
it
?
You
know
,
and
I
think
about
this
disease
as
a
whole
,
it
primarily
presents
itself
during
adolescence
,
and
so
you're
not
even
fully
developed
mentally
,
emotionally
,
physically
,
and
so
for
us
to
be
able
to
understand
that
at
a
young
age
is
a
lot
to
put
on
the
patient
and
to
put
on
the
endometriosis
patient
for
years
,
and
that's
when
the
formative
years
in
our
development
start
.
So
when
you
think
about
the
trauma
early
on
,
you're
developing
with
trauma
,
and
so
I
mean
there
is
an
element
of
needing
mental
health
support
,
but
it's
not
in
the
same
way
as
a
lot
of
the
providers
have
made
it
sound
.
Speaker 1
19:03
Our
pain
is
real
but
it's
also
trauma
is
real
,
so
I
don't
know
.
I
think
a
lot
of
us
are
experiencing
the
same
things
.
It's
just
the
way
that
how
we
navigate
our
individual
healthcare
systems
is
a
little
bit
different
,
because
here
we
get
to
choose
the
doctor
we
want
to
see
,
whether
we
want
to
use
insurance
or
not
,
or
whether
we
have
insurance
or
not
,
because
there's
multiple
companies
that
have
insurance
here
and
different
plans
and
everything
else
.
But
in
the
UK
it's
a
lot
different
.
How
is
it
for
you
to
navigate
and
for
those
overseas
to
navigate
health
care
?
Speaker 2
19:42
so
ours
is
is
quite
complex
in
that
we
have
this
central
national
health
service
,
or
the
nhs
,
which
provides
health
care
free
,
at
the
point
of
need
,
so
you
could
rock
up
to
any
hospital
if
you
,
you
know
,
needed
A&E
or
ER
I
think
you
guys
call
it
and
Navigating Endometriosis Healthcare Systems
Speaker 2
20:01
you
could
get
help
.
You've
got
GPs
which
are
like
the
primary
health
care
practitioners
,
so
those
are
kind
of
like
your
gatekeepers
.
So
you
would
go
to
your
GP
with
presenting
with
symptoms
,
so
with
endometriosis
you
would
probably
go
because
,
for
example
,
you
were
experiencing
painful
periods
at
a
younger
age
,
and
then
they
would
decide
whether
you
could
be
treated
with
medication
,
for
example
,
or
whether
you
need
a
scan
,
or
whether
you
need
a
referral
.
So
they
really
hold
quite
a
lot
of
power
.
And
then
,
if
you
then
get
a
referral
,
you
would
go
to
a
hospital
where
you
would
then
see
the
gynecologist
,
for
example
,
or
,
if
gp
knew
what
they
were
doing
,
an
endometriosis
specialist
,
um
.
So
that's
kind
of
like
the
nhs
system
.
Speaker 2
20:40
Then
we
also
have
a
private
health
care
system
where
you
can
,
either
,
with
insurance
or
pay
out
of
pocket
,
go
and
you
can
access
.
You
can
then
choose
your
doctor
that
way
as
well
,
um
,
which
a
lot
of
people
with
endometriosis
are
turning
to
that
,
it
doesn't
mean
they
can
afford
to
turn
to
that
.
Unfortunately
,
a
lot
of
people
are
taking
out
loans
,
putting
it
on
credit
cards
.
I
know
some
people
who
have
taken
out
mortgages
just
to
try
and
access
healthcare
because
there
is
so
much
um
delay
,
uh
medical
dismissal
,
um
ineffective
treatments
being
offered
and
promoted
through
the
nhs
.
So
there's
a
lot
of
reasons
why
people
are
filtering
out
to
the
private
healthcare
system
,
but
that
doesn't
mean
that
they
can
afford
it
and
so
many
people
that
isn't
even
an
option
to
be
able
to
afford
it
.
So
it's
really
important
that
in
the
UK
we
look
at
how
the
NHS
is
operating
and
how
we
improve
access
to
it
and
how
we
improve
the
quality
of
what
they
provide
.
And
you
were
saying
about
how
in
the
States
it's
kind
of
the
dollar
bill
really
leads
what's
offered
,
and
in
a
lot
of
ways
it's
exactly
the
same
here
.
Speaker 2
21:52
The
NHS
is
hugely
underfunded
.
Gynecology
always
seems
.
I
know
endomet
nhs
is
hugely
underfunded
.
Gynecology
always
seemed
.
I
know
endometriosis
shouldn't
be
under
gynecology
,
but
it
very
much
is
here
for
now
.
Um
,
and
it's
gynecology
is
always
the
one
that
is
at
the
bottom
of
the
pile
.
We
have
the
longest
waiting
lists
.
I
think
a
report
came
out
recently
that
I
think
it's
like
600
000
women
are
waiting
for
gynecology
appointments
in
the
uk
.
It's
absolutely
the
nhs
is
on
its
knees
.
Speaker 2
22:17
Basically
,
it's
an
amazing
,
amazing
thing
and
we
should
be
protecting
it
.
But
it's
also
not
a
perfect
system
.
It's
a
system
that
was
designed
by
men
,
based
on
medicine
and
research
done
by
men
on
men
for
men
,
very
misogynistic
structure
,
um
.
But
that
doesn't
mean
we
shouldn't
be
protecting
it
because
it
is
also
amazing
.
But
so
,
in
terms
of
navigating
it
and
accessing
it
,
sometimes
it
is
very
much
like
we
are
trying
to
shoehorn
a
square
peg
into
a
round
hole
.
Speaker 2
22:45
And
you
know
,
when
it
comes
to
our
bodies
,
women's
bodies
,
girls
bodies
,
bodies
with
endometriosis
,
they're
,
you
know
,
they're
not
designed
to
fit
into
this
system
.
That
just
sees
it
as
a
period
problem
,
which
we
know
it
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
?
Speaker 2
23:38
you
know
,
we're
kind
of
like
how
do
you
even
begin
?
So
it's
a
very
difficult
system
that
is
hugely
under-resourced
.
It's
filled
with
amazing
people
that
want
to
do
amazing
things
.
They're
just
not
really
given
the
resource
to
be
able
to
do
that
,
and
it's
also
a
structure
that
is
inherently
historically
misogynistic
and
that's
something
that
I
mean
.
How
do
you
change
it
?
Speaker 2
24:06
there
are
lots
of
people
working
to
change
it
right
but
there
are
questions
of
do
you
,
you
know
,
metaphorically
burn
it
to
the
ground
and
rebuild
,
or
do
you
keep
tinkering
around
the
edges
?
And
I
don't
know
the
answer
to
that
.
We're
very
lucky
to
have
a
system
like
that
.
You
know
,
nobody
in
this
country
technically
has
to
worry
about
accessing
healthcare
.
That's
the
idea
,
and
we
are
extremely
privileged
to
have
that
,
because
not
many
countries
do
.
But
yeah
,
it's
certainly
not
a
perfect
system
and
it
is
certainly
not
one
that
endometriosis
is
designed
to
operate
within
.
It's
not
set
up
to
support
that
very
much
,
even
we
so
we
have
these
things
called
endometriosis
centers
,
the
sge
endometriosis
centers
.
They're
kind
of
.
They're
held
up
as
the
centers
of
excellence
for
endometriosis
care
in
the
uk
.
Speaker 2
24:56
Now
there
are
all
sorts
of
issues
over
whether
that's
true
.
You
know
,
the
standards
for
what
you
know
,
the
barriers
for
what
you
can
call
yourself
one
are
shockingly
low
,
to
be
honest
,
but
that's
a
completely
separate
issue
.
But
they
sit
under
gynecology
and
that
leads
to
a
whole
host
of
problems
.
Yes
,
one
we
know
it's
a
full-body
disease
.
So
you're
constantly
being
shuttled
around
a
hospital
to
try
and
get
to
all
these
different
appointments
and
and
then
sometimes
months
apart
,
years
apart
,
the
waiting
list
can
be
horrendous
,
and
that's
if
you
get
one
that
actually
believes
it's
a
full-body
disease
.
Um
,
I
was
in
a
recently
and
they
literally
said
I've
had
hysterectomy
but
I
still
suffer
with
endometriosis
symptoms
.
And
they
literally
said
to
me
it
can't
be
gynecological
because
you
don't
have
your
gynecological
organ
.
Um
,
yeah
,
I
was
just
like
you're
so
close
to
realizing
,
so
close
to
getting
it
,
but
we're
still
not
there
wouldn't
that
be
an
indicator
?
Speaker 1
25:50
that's
like
an
indicator
.
Well
,
yeah
,
you're
having
symptoms
.
Speaker 2
25:54
You
know
if
everyone's
having
these
symptoms
still
and
have
hysterectomies
yeah
,
but
so
many
of
us
are
being
labeled
as
drug
seekers
.
When
we
turn
up
to
any
,
for
example
,
in
so
much
pain
,
they're
like
,
well
,
she
can't
possibly
have
endometriosis
anymore
,
so
she
must
be
drug
seeking
,
and
that's
kind
of
like
,
no
,
I'm
just
here
because
I
can't
manage
this
pain
at
home
.
So
,
yeah
,
it's
,
it
is
not
a
great
system
at
all
.
And
and
then
you
also
you
.
So
you
go
to
your
waiting
um
room
for
your
appointment
and
your
endometriosis
appointment
,
but
because
it's
in
gynecology
,
you're
sat
with
the
maternity
waiting
room
and
so
when
you're
there
,
because
you
might
be
having
hysterectomy
or
you're
just
having
fertility
troubles
with
this
disease
,
and
you're
sat
with
all
of
these
parents
to
be
it's
hard
,
it's
hard
.
So
even
if
you
sort
of
take
out
the
scientific
,
you
know
it
just
shouldn't
be
there
.
Speaker 2
26:48
The
human
aspect
of
it
is
not
great
either
.
Or
I
could
talk
about
the
state
of
the
NHS
for
days
is
not
great
either
.
Or
I
could
talk
about
the
state
of
the
NHS
for
days
.
Yeah
,
we
kind
of
always
brought
up
to
treasure
it
,
not
question
it
.
You
know
they're
amazing
people
doing
amazing
things
and
we're
lucky
to
have
it
,
and
it
is
true
.
But
at
the
same
time
it
is
not
currently
fit
for
purpose
,
especially
in
endometriosis
care
,
yeah
,
in
my
opinion
,
it's
similar
.
Speaker 1
27:15
I
would
even
say
here
,
because
you
know
,
for
us
,
even
though
we
have
access
to
insurance
,
a
lot
of
endometriosis
care
not
all
a
lot
of
good
endometriosis
care
is
private
pay
.
So
a
lot
of
people
are
taking
out
second
mortgages
on
their
houses
,
they're
taking
out
loans
they
can't
really
afford
just
to
get
proper
care
,
and
because
here
endometriosis
is
not
recognized
,
the
same
for
excision
versus
ablation
,
and
so
they'll
pay
out
for
a
lot
of
doctors
for
ablation
but
they
won't
do
excision
,
so
excision's
just
not
recognized
really
within
the
healthcare
system
,
I
mean
within
the
insurance
system
.
Speaker 2
28:00
You
can
access
care
,
but
not
good
care
and
appropriate
care
.
Speaker 1
28:05
I
think
you
can
still
access
good
care
,
depending
on
the
doctor
and
depending
on
the
education
.
However
,
if
you
want
to
see
a
surgeon
who
specializes
in
endometriosis
excision
,
that's
where
it
gets
a
little
tricky
,
and
there
are
certainly
doctors
that
I
know
of
that
are
phenomenal
surgeons
for
endometriosis
and
do
carry
insurance
.
So
it
is
possible
.
It
just
is
dependent
on
if
you
want
to
travel
,
dependent
on
if
you
want
to
travel
,
and
then
also
if
that
person
takes
your
insurance
or
if
they
operate
within
your
need
set
.
So
if
you
have
deep
infiltrating
endometriosis
,
there
might
be
surgeons
here
that
do
endometriosis
,
but
maybe
not
to
the
extent
that
you
would
need
.
So
it
really
is
very
convoluted
within
our
system
and
it
sounds
very
similar
in
a
lot
of
regards
to
yours
.
However
,
I
will
say
that
I
think
here
we
do
have
a
lot
of
great
surgeons
.
It's
just
how
do
we
access
them
,
how
do
we
afford
them
and
how
do
we
not
wait
a
year
and
a
half
on
the
wait
list
to
see
them
?
Speaker 2
29:14
Yeah
,
the
waiting
lists
are
absolutely
.
I
think
the
hospital
that
I'm
closest
to
their
current
one
is
around
18
months
to
two
years
and
that's
for
any
endometriosis
,
unless
it's
,
you
know
,
really
affecting
a
vital
organ
and
you
need
to
be
in
their
asaps
.
That's
the
kind
of
standard
waiting
list
that
you
would
be
expected
to
wait
for
and
that's
why
so
many
people
are
turning
to
the
private
healthcare
sector
over
here
.
But
again
,
that's
such
a
privilege
that
not
everybody
can
do
and
can
access
,
and
I
think
sometimes
we
can
be
so
in
the
trenches
with
our
own
journey
and
with
our
own
environment
that
we
sometimes
forget
that
there
are
lots
of
other
people
that
don't
have
access
the
way
we
have
access
.
I
think
access
is
such
a
layered
and
complicated
thing
,
so
my
access
will
be
really
really
different
to
somebody
from
a
lower
income
,
a
lower
level
of
education
,
a
different
cultural
background
.
You
know
a
different
cultural
background
,
you
know
a
different
race
,
a
different
religious
background
.
All
of
these
things
will
implement
how
,
or
impact
how
we
can
access
healthcare
.
Speaker 1
30:25
This
conversation
isn't
over
yet
.
We
continue
to
be
vulnerable
with
our
experiences
and
the
things
that
we've
learned
in
our
prospective
countries
.
So
join
us
next
week
as
we
continue
in
this
enlightening
conversation
and
,
until
next
time
,
continue
advocating
for
you
and
for
those
that
you
love
.