Send us a text with a question or thought on this episode ( We cannot replay from this link)
When we peel back the layers of healthcare access for endometriosis and adenomyosis sufferers, a tangled web of systemic biases and inequalities is revealed. Joined by the insightful Jen Moore, our latest episode delves into the heart-breaking narratives from all corners of the globe, including the stark discrimination unmarried women in India face and the prolonged wait times that disproportionately affect black women in the UK. We confront the distressing realities that income, culture, and race play in healthcare, scrutinizing the obstacles specialists grapple with in their quest to deliver affordable, expert care within the constraints of insurance and private practice.
Imagine the frustration of navigating medical misinformation, where even the experts falter. Jen and I share our own stories of advocating for accurate treatment in a sea of inaccuracies that permeate even the most esteemed medical texts. We dissect the dangerous misconceptions, like the myth of hysterectomies as a cure-all for endometriosis, which only scratch the surface of the broader issue. It’s an unfiltered conversation on the vital need for patients to arm themselves with knowledge, push for comprehensive medical records, and challenge the status quo of medical care, especially when chronic illnesses cast long shadows on one’s quality of life.
Jen’s journey from personal struggle to a beacon of advocacy is nothing short of heroic. Through heartfelt stories of advocacy and the emotional toll of chronic pain, we underscore the importance of individualized treatment paths and the nuances of long-term rehabilitation. This episode is an empowering reminder of the power of community, the significance of multidisciplinary approaches to treatment, and the ongoing fight for better, more compassionate care. Pour yourself a comforting beverage and join us as we offer support, knowledge, and a shared sense of purpose to those navigating the complexities of endometriosis and adenomyosis.
Website endobattery.com
Access and Challenges in Healthcare
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
my
guest
and
I
,
Jen
Moore
,
at
the
table
as
we
continue
with
our
unfiltered
conversation
.
Just
as
a
reminder
,
this
is
where
we
left
off
and
where
we're
going
.
Speaker 2
0:55
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
,
a
different
race
,
a
different
religious
background
.
All
of
these
things
will
implement
how
or
impact
how
we
can
access
health
care
,
and
I
get
stories
every
single
day
from
people
saying
things
along
those
lines
that
there
was
one
lady
in
India
and
she
actually
gave
me
permission
to
share
this
and
she
messaged
me
saying
that
she
was
refused
a
transvaginal
ultrasound
because
she
wasn't
married
.
So
she
was
an
adult
,
but
she
was
unmarried
and
they
refused
to
even
perform
one
on
her
.
So
she
couldn't
even
get
past
that
kind
of
level
to
get
to
the
next
level
she
was
.
It
was
just
an
immediate
no
,
so
she
was
sent
away
and
told
deal
with
it
why
would
a
race
,
a
religion
automatically
disqualify
you
from
proper
care
?
Speaker 2
2:08
religion
automatically
disqualify
you
from
proper
care
,
like
it
shouldn't
.
It
shouldn't
,
but
racism
and
bigotry
means
that
it
does
.
And
I
think
black
women
are
twice
their
sort
.
Of
wait
to
diagnosis
time
is
likely
to
be
twice
as
long
here
in
the
uk
.
I
don't
know
about
elsewhere
,
I'm
sure
it's
the
same
.
You
know
they
could
wait
twice
as
long
as
I
did
,
purely
just
because
the
color
of
their
skin
and
outdated
ideas
that
they
feel
less
pain
than
we
do
,
or
you
know
all
these
other
things
,
and
it's
just
.
Speaker 2
2:34
It
is
so
wrong
.
Yeah
,
so
so
wrong
.
And
I
think
I
do
think
it's
really
important
that
,
no
matter
how
difficult
my
journey
was
and
it
was
an
exceptionally
difficult
journey
to
get
access
to
health
care
,
it
was
way
too
long
,
22
years
no
matter
how
difficult
that
was
,
I
didn't
have
those
other
barriers
.
That
puts
me
in
quite
a
privileged
position
.
Obviously
didn't
feel
like
it
at
the
time
,
but
I
do
try
and
remind
myself
of
that
,
because
I'm
just
humbled
every
day
by
messages
telling
me
how
difficult
it
is
for
people
all
around
the
world
,
but
in
the
UK
.
How
difficult
it
is
for
people
all
around
the
world
,
but
in
the
UK
,
how
difficult
it
is
for
them
to
access
care
.
Speaker 1
3:08
Absolutely
.
I
mean
,
I
think
that's
true
around
the
world
.
Care
for
endometriosis
is
so
hard
and
I
do
think
that
those
who
specialize
in
endometriosis
and
excision
of
endometriosis
are
doing
their
absolute
best
to
meet
patients
where
they're
at
.
But
it's
hard
because
you're
seeing
patient
after
patient
after
patient
and
these
doctors
,
especially
in
the
US
,
still
have
to
keep
the
lights
on
and
they
still
have
to
feed
their
families
.
So
I
understand
why
they
have
to
do
private
pay
to
be
able
to
afford
to
practice
.
Otherwise
it
becomes
really
not
advantageous
for
them
to
do
it
,
because
they
can't
pay
their
staff
.
And
you
want
a
good
staff
when
you're
dealing
with
these
high
intensity
,
high
complexity
surgeries
,
and
then
you
also
want
to
be
able
to
make
a
living
,
but
you
also
have
this
passion
and
this
drive
to
help
those
with
endometriosis
,
so
it
becomes
a
very
complex
issue
that
they
are
dealing
with
and
they're
confronted
with
on
a
daily
basis
.
And
then
they
get
the
patient
backlash
,
so
to
speak
,
because
they're
like
why
do
I
have
to
pay
so
much
for
the
surgery
?
Shouldn't
it
be
covered
by
insurance
?
Well
,
ideally
yes
,
but
because
of
the
way
that
our
healthcare
system
works
and
the
way
that
the
insurance
system
works
,
it's
not
and
it
comes
down
.
Speaker 1
4:27
So
here
with
insurance
,
they
have
billing
codes
and
the
billing
codes
are
the
same
whether
you
do
excision
or
ablation
,
whether
you
are
a
general
GYN
or
if
you're
a
specialist
GYN
.
So
the
billing
codes
for
insurance
are
the
same
.
But
that's
like
saying
an
oncologist
who
does
breast
cancer
oncology
is
the
same
as
doing
prostate
oncology
.
They're
very
different
subsets
but
they're
still
oncology
.
So
they're
still
doing
cancer
,
but
they
can't
operate
on
prostate
when
you're
a
breast
cancer
surgeon
,
you
know
,
or
an
oncologist
.
So
it's
very
similar
to
that
,
but
the
codes
just
don't
align
with
it
.
So
it
becomes
a
restrictive
measure
for
both
the
doctor
and
the
patient
.
And
there
are
certainly
quite
a
few
still
that
are
trying
to
work
within
the
healthcare
system
and
take
insurance
.
So
again
,
I
think
true
,
specialists
are
doing
their
absolute
best
to
meet
patients
where
they
are
.
It's
just
really
hard
across
the
board
.
Speaker 2
5:30
Interesting
.
There's
an
interesting
parallel
actually
in
the
UK
in
that
obviously
if
you're
an
NHS
surgeon
you
get
paid
by
the
NHS
,
so
you
don't
have
that
needing
to
keep
the
lights
on
.
But
I've
spoken
to
quite
a
few
endometriosis
surgeons
who
do
private
as
well
as
NHS
and
I
asked
them
why
they
do
that
.
Because
again
,
they
get
often
get
a
backlash
like
well
,
shouldn't
your
time
be
in
the
NHS
?
You
know
,
we've
trained
you
in
the
NHS
,
why
are
you
now
profiting
off
it
?
Speaker 2
5:57
And
they
say
they
actually
said
something
so
interesting
and
it
was
because
we
weren't
allowed
to
offer
the
treatments
that
we
wanted
to
and
that
the
disease
requires
with
the
nhs
guidelines
,
and
the
nhs
guidelines
was
very
much
ablation
is
fine
,
surgery
isn't
really
required
for
the
vast
majority
of
cases
.
You
know
they're
fine
,
hormonal
treatments
are
best
.
You
know
all
these
kind
of
things
.
And
they
were
saying
we're
not
allowed
to
practice
the
kind
of
medicine
that
we
actually
want
to
practice
in
this
specialism
unless
we
do
it
in
this
environment
and
unfortunately
that
is
in
the
private
sector
.
So
there's
an
interesting
parallel
,
like
you
say
,
and
I
work
with
clinicians
a
lot
and
I
always
say
they
don't
go
into
medicine
to
make
your
life
miserable
.
Speaker 2
6:42
There
are
so
many
easier
,
quicker
,
cheaper
ways
than
getting
a
medical
degree
right
if
you
want
it
to
make
someone's
life
a
misery
or
harder
or
be
sexist
.
You
know
all
these
things
.
They
don't
do
it
.
They
go
into
medicine
because
they're
either
really
fascinated
by
it
or
they
want
to
make
a
massive
difference
,
right
?
So
I
always
try
and
remind
myself
of
that
and
I
mean
there
obviously
are
just
some
misogynists
practicing
in
healthcare
.
They're
just
are
,
but
the
vast
majority
of
them
are
just
.
They
know
what
they
know
,
right
,
and
they
don't
know
what
they
don't
know
.
Speaker 2
7:16
But
how
do
we
fill
in
those
gaps
?
And
how
do
we
do
it
with
empathy
?
Because
if
you've
been
doing
a
12-hour
day
in
an
operating
theater
and
then
somebody
comes
at
you
and
says
,
you
know
,
you've
made
my
life
a
misery
,
you've
done
this
wrong
,
you
didn't
listen
to
me
all
very
,
very
valid
things
,
right
,
but
of
course
the
reaction
is
going
to
be
defensiveness
.
So
it's
,
how
do
we
do
we
get
into
this
system
and
try
and
diffuse
this
historic
baked
in
sexism
so
that
they
can
actually
start
to
believe
us
when
we
go
with
our
symptoms
?
If
we
can
get
them
to
believe
us
when
we
go
,
how
different
would
that
be
?
That
would
be
amazing
,
wouldn't
Challenging Medical Misinformation on Endometriosis
Speaker 2
7:56
it
?
Speaker 1
7:56
It
would
.
And
you
know
,
I
think
that
is
kind
of
at
the
core
of
a
lot
of
the
issues
surrounding
endometriosis
is
that
it's
definition
at
its
core
.
What
it
is
,
its
definition
I
mean
truly
,
and
I
don't
understand
the
challenge
with
this
is
that
it
is
so
ingrained
.
It
is
so
ingrained
within
the
medical
system
abroad
.
I
don't
think
this
is
specific
to
country
.
I
think
this
is
largely
misunderstood
,
and
so
that
is
where
education
kind
of
gets
a
little
gray
,
because
when
you
start
with
the
wrong
definition
and
only
touch
on
it
in
medical
school
for
a
period
of
like
two
hours
maybe
a
day
,
you're
going
to
miss
an
entire
subset
of
disease
yeah
,
I
actually
went
and
sat
in
the
university
of
cambridge
medical
library
.
Speaker 2
8:50
I
went
and
sat
in
there
and
it
had
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
.
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
that
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
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 2
9:41
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
9:53
No
,
but
I
mean
just
even
thinking
on
a
logical
scale
,
like
it
just
does
not
make
sense
.
And
it
was
interesting
because
,
you
know
,
I
had
Dr
David
Redwine
on
right
before
his
passing
and
he
will
be
greatly
missed
.
But
just
when
he
even
brought
this
up
,
he's
like
it
doesn't
make
logical
sense
because
the
way
that
the
body
is
formed
and
I
just
sat
there
,
it
was
so
funny
in
that
conversation
,
he
just
was
so
passionate
about
it
,
but
it
was
interesting
because
he
was
sitting
there
he's
like
why
can't
we
think
outside
of
the
uterus
?
Because
he
was
sitting
there
,
he's
like
why
can't
we
think
outside
of
the
uterus
,
you
know
?
And
,
and
it's
so
true
,
because
just
the
way
that
our
bodies
are
formed
,
it
doesn't
make
sense
to
just
cut
out
the
uterus
,
like
just
here
we
are
,
extra
piece
of
black
market
material
,
like
it
doesn't
make
any
sense
and
it's
always
talked
about
so
flippantly
as
well
,
like
before
mine
.
Speaker 2
10:44
The
surgeon
hadn't
noted
it
on
the
sort
of
what
they
were
going
to
do
the
plan
and
so
I
called
and
I
said
,
oh
,
I've
noticed
the
hysterectomy
is
missing
.
And
he
was
like
oh
,
it's
fine
,
don't
worry
about
it
.
Three
cuts
straight
out
20
minutes
.
Don't
you
worry
about
it
,
we
can
add
that
.
And
I
was
like
you're
talking
about
my
organ
,
not
just
my
organ
,
but
my
like
.
Have
a
little
bit
of
compassion
or
respect
or
something
like
I
was
.
So
about
it
,
and
so
many
people
have
said
the
same
that
it's
just
kind
of
like
oh
,
yeah
,
we'll
just
get
rid
of
that
,
that's
fine
.
Like
it's
a
piece
of
you
know
,
I
don't
know
,
like
junk
or
something
.
Speaker 1
11:21
Right
.
It's
treated
that
way
a
lot
of
times
and
yet
they
will
be
so
ready
to
get
rid
of
that
organ
,
which
means
a
lot
to
us
,
but
not
the
disease
.
It
just
doesn't
compute
for
me
on
why
that's
the
case
.
But
again
,
I
mean
,
I
think
I
look
back
at
my
journey
and
the
misinformation
I
was
given
and
it
came
from
a
place
of
wanting
to
help
me
but
with
the
lack
of
information
or
knowledgeable
,
accurate
information
,
and
it
is
an
issue
.
It's
a
huge
issue
and
I
think
just
in
our
conversation
we're
realizing
it
is
everywhere
.
Speaker 1
11:58
It
doesn't
matter
where
you
live
,
it
doesn't
matter
what
healthcare
system
you
live
in
.
It
is
a
very
,
very
big
deal
.
This
is
hard
for
everyone
,
and
then
you
add
additional
components
to
that
,
whether
it's
race
,
religion
,
sexual
orientation
,
all
of
that
and
that
makes
it
increasingly
harder
to
get
good
,
proper
care
,
and
along
the
way
,
it's
not
hard
to
gain
more
medical
trauma
.
Speaker 2
12:26
So
yeah
,
collecting
it
.
I
think
yeah
.
My
husband
always
says
,
like
you're
collecting
it
,
like
pokemon
,
you
need
to
stop
.
But
I
don't
want
to
collect
it
though
they
just
keep
throwing
it
at
me
yeah
,
it's
the
gift
I'll
give
back
.
Speaker 1
12:41
Can
I
re-gift
this
?
Speaker 2
12:43
yeah
,
yeah
,
definitely
Leave
the
label
.
Speaker 1
12:46
Right
,
yeah
,
it's
the
one
thing
I
don't
want
to
take
the
price
tag
off
of
and
pay
.
Speaker 2
12:50
Yes
,
yes
,
you
have
the
receipt
,
please
For
sure
.
Speaker 1
12:55
Which
is
true
.
I
mean
,
like
it's
so
funny
that
we're
joking
around
about
that
,
but
at
the
same
time
,
you're
like
you
should
get
a
receipt
,
aka
your
medical
records
,
from
your
providers
and
be
able
to
look
back
and
understand
what
was
done
and
what
wasn't
done
and
have
a
better
picture
of
your
overall
health
.
So
if
you
need
to
see
another
provider
,
you
do
have
that
to
say
look
,
I've
already
gone
down
the
road
that
you're
telling
me
to
go
down
.
You
need
to
come
up
with
a
better
solution
and
better
knowledge
around
care
so
that
we
don't
have
to
go
down
this
road
again
,
because
I
do
think
that
a
lot
of
us
are
confronting
more
and
more
practitioners
.
It's
whether
they're
open
to
that
confrontation
and
learning
A
hundred
percent
yes
,
and
we
are
fully
within
our
rights
to
do
so
.
Speaker 2
13:38
I
mean
,
there
are
bodies
,
at
the
end
of
the
day
,
and
if
we're
not
being
the
proudest
advocate
of
our
own
bodies
,
then
we
can't
really
expect
anyone
else
to
be
either
.
But
there
it
has
to
be
met
with
a
decent
level
of
education
on
the
other
side
as
well
.
It's
kind
of
like
a
two-way
arrangement
.
We
should
be
able
to
go
in
and
say
what
we
want
and
what
we
think
is
going
on
and
all
these
kind
of
things
,
but
they
should
be
bringing
up-to-date
education
to
the
party
you
.
It
shouldn't
be
a
one
way
street
in
either
respect
.
Yeah
,
so
I
do
like
you
say
.
Speaker 2
14:08
I
think
we
are
getting
to
a
point
where
we've
just
had
enough
and
we're
just
refusing
to
internalize
it
anymore
.
You
know
,
with
medical
misogyny
,
for
example
,
we're
just
expected
to
put
up
with
it
,
to
access
care
half
the
time
.
We're
just
expected
to
be
told
you
know
,
you
know
,
oh
,
it's
just
a
bad
period
and
it's
just
that
we're
just
continually
absorbing
this
and
internalizing
it
and
normalizing
it
and
we
have
to
reach
a
point
where
we
say
no
,
enough's
enough
.
Yeah
,
and
for
me
that
point
was
before
my
hysterectomy
and
the
surgeon
who
thankfully
did
not
perform
.
It
said
to
me
me
,
jen
,
I've
got
three
kids
.
Maybe
the
fact
that
you
can't
have
any
will
balance
out
the
environmental
impact
of
mine
.
Speaker 2
14:49
Wow
no
yeah
,
this
was
shortly
before
my
hysterics
,
me
.
So
I
just
I
focused
on
healing
and
I
focused
on
getting
through
that
surgery
and
that
recovery
.
But
the
whole
time
that
that
interaction
just
kept
circling
back
into
the
front
of
my
brain
and
I
,
just
when
I
was
strong
enough
,
I
just
said
no
,
I'm
not
internalizing
that
one
anymore
.
And
I
thought
for
a
while
I
was
like
,
how
,
what
do
I
do
with
that
?
Do
I
go
to
pals
,
which
is
like
our
NHS
complaint
sort
of
system
?
Um
,
but
he
has
openly
mocked
that
procedure
to
me
,
the
pals
procedure
,
so
I'm
not
going
to
do
that
because
that
obviously
means
nothing
to
him
.
And
I
kept
going
around
,
what
do
I
do
with
this
?
And
in
the
end
I
did
what
?
The
only
thing
I
know
how
to
do
.
I
set
up
an
account
.
Um
called
both
,
said
what
,
and
I
thought
do
you
know
what
?
This
is
bigger
than
me
,
it's
bigger
than
that
one
man
,
it's
bigger
than
that
one
comment
.
Speaker 2
15:45
So
I
started
a
project
to
collate
and
bring
into
the
light
this
phenomena
of
medical
dismissal
and
gaslighting
across
women's
health
care
,
not
just
random
metriosis
and
the
response
has
been
humbling
and
harrowing
and
enraging
it's
.
We've
had
hundreds
and
hundreds
of
submissions
already
,
and
the
idea
with
it
is
that
we
will
then
compile
them
and
take
them
to
the
people
in
charge
and
try
and
get
them
to
wake
up
and
realize
what's
happening
,
because
it
isn't
about
just
a
sexist
surgeon
.
It's
something
that
is
so
ingrained
into
our
medical
system
that
they
think
it's
okay
or
they
don't
even
realize
that
they're
doing
it
.
But
that's
worse
,
in
my
opinion
,
if
you
don't
even
realizing
that
you're
being
like
that
.
I
mean
some
of
them
,
though
it
sounds
really
awful
when
I
say
this
,
but
some
of
them
make
you
laugh
,
not
because
they're
actually
funny
,
but
because
they
are
just
so
ludicrous
.
There
was
one
woman
who
went
to
her
GP
because
she
was
having
adenomyosis
symptoms
,
really
suffering
with
them
,
and
he
said
to
her
have
you
ever
considered
that
they
could
be
?
You
know
symptoms
from
a
past
life
.
Speaker 1
16:55
Yep
,
that
tracks
right
.
Speaker 2
16:58
Right
and
it's
kind
of
it's
so
ridiculous
until
you
think
that
was
actually
the
level
of
care
this
woman
received
.
She
was
then
sent
away
and
told
to
research
regression
therapists
.
Now
,
no
matter
what
your
beliefs
are
in
terms
of
past
lives
and
all
that
kind
of
thing
,
that
is
not
appropriate
care
for
a
very
real
disease
that
she
needed
help
with
.
It's
yeah
,
it
.
It's
just
we
are
getting
to
a
point
where
enough's
enough
,
it's
just
.
What
do
we
do
with
that
?
What
do
we
do
with
that
level
of
emotion
,
that
level
of
frustration
and
anger
and
motivation
,
and
the
best
way
that
I
know
to
handle
it
is
to
try
and
channel
it
.
I'm
not
saying
that's
for
everybody
.
Some
people
just
want
to
go
to
a
rage
room
and
smash
things
up
.
I
have
days
like
that
too
,
yeah
,
but
for
me
,
if
I
can
make
a
difference
to
like
the
lives
of
my
nieces
growing
up
,
so
that
they
don't
have
to
go
through
that
.
Speaker 2
17:58
If
I
could
do
that
,
or
at
least
be
part
of
a
society
that
tried
to
do
that
,
then
I
think
I
would
have
done
something
good
from
my
journey
,
yeah
.
Speaker 1
18:07
What
is
your
project
?
Can
you
explain
that
a
little
bit
as
far
as
the
name
and
where
people
can
get
involved
in
this
project
if
they
want
to
?
Speaker 2
18:17
so
it's
called
.
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
.
Speaker 2
18:30
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
.
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
hopefully
start
to
chip
away
at
that
in
the
future
Dealing With Desperation in Endometriosis
Speaker 2
19:12
.
Speaker 2
19:12
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
,
like
she
was
so
like
angry
about
it
and
I
was
like
that's
a
really
cool
name
,
yeah
.
So
yeah
,
she's
a
graphic
designer
,
so
she
designed
it
all
for
me
and
stuff
.
Um
.
So
yeah
,
it
came
from
my
friend's
outrage
.
Speaker 1
19:37
I
don't
know
anyone
who
has
done
advocacy
that
hasn't
said
they
.
They've
said
,
they
said
what
like
?
That's
so
brilliant
,
it's
so
brilliant
actually
this
is
brilliant
it
is
great
.
Speaker 1
19:50
Yes
,
it's
so
wonderful
.
I
that's
such
a
great
idea
.
It
,
I
mean
,
I
hear
it
all
the
time
.
I
think
much
like
anyone
who
is
really
ingrained
and
embedded
within
the
endometriosis
community
.
We
hear
some
of
the
most
asinine
things
.
Sometimes
I
sit
back
and
say
how
do
these
people
think
up
those
things
?
To
say
Like
that
is
not
a
normal
thing
to
even
consider
for
most
people
.
Why
did
that
come
out
of
your
mouth
?
What
made
you
think
that
?
You
know
?
It
just
is
appalling
.
Speaker 2
20:22
Well
,
a
friend
of
mine
.
She
submitted
one
of
her
experiences
and
she
suffers
horrendously
with
bowel
and
bladder
endometriosis
,
along
with
others
.
Speaker 2
20:33
And
surgeon
said
to
her
if
you
were
a
horse
,
you'd
have
been
put
down
by
now
they
said
what
yeah
,
again
,
kind
of
one
of
those
things
of
on
what
planet
did
you
think
that
was
an
appropriate
thing
to
say
to
somebody
?
Yeah
,
especially
somebody
who
have
gone
through
so
much
and
who
was
facing
a
second
um
stoma
.
She's
had
to
have
two
stomas
,
so
she's
come
through
so
much
and
you
think
that's
an
appropriate
thing
to
say
to
her
no
,
it's
not
.
Speaker 1
21:13
in
case
you
were
wondering
.
It
is
not
okay
to
say
to
someone
like
that
yeah
,
oh
my
gosh
.
Speaker 1
21:19
Oh
,
I
can't
even
.
I
mean
,
I
want
to
come
back
a
little
ways
,
because
we
were
talking
about
the
time
it
takes
to
get
into
proper
care
or
even
any
care
for
endometriosis
,
and
I
think
that
when
we
get
answers
like
this
and
then
we
have
to
go
sit
on
another
waiting
list
and
we
have
to
find
someone
else
,
that's
going
to
take
us
serious
and
we're
trying
to
navigate
the
next
part
of
our
journey
,
and
then
again
it's
another
year
to
two
years
out
potentially
.
What
are
you
seeing
people
do
in
desperation
Because
I
feel
like
this
is
a
big
component
of
endometriosis
and
how
we
struggle
so
bad
because
we
are
desperate
.
We
are
desperate
for
some
relief
,
we
are
desperate
for
answers
,
we
are
desperate
for
just
being
able
to
function
and
have
a
quality
,
some
quality
of
life
for
some
people
.
What
have
you
experienced
over
there
as
far
as
the
desperation
piece
goes
?
What
are
people
doing
Because
they
have
to
become
so
desperate
at
this
point
?
Speaker 2
22:19
Yeah
,
so
the
average
diagnosis
time
over
here
has
just
gone
up
.
So
,
depending
on
which
nation
of
the
UK
you're
in
,
it's
either
just
under
nine
years
or
just
under
10
years
,
and
that's
the
average
.
I
did
a
poll
on
my
and
actually
it's
looking
much
,
much
higher
than
that
.
I
think
those
are
vastly
under
underestimated
.
And
then
,
like
you
say
,
that's
only
one
half
of
the
picture
,
because
okay
,
you've
got
your
diagnosis
,
but
now
you've
got
to
wait
again
for
treatment
,
and
is
that
treatment
good
?
So
you
know
,
we
there's
a
lot
of
media
and
government
focus
on
this
diagnosis
time
,
but
and
reducing
that
,
which
is
hugely
needed
,
but
we
also
need
to
reduce
the
other
piece
too
,
and
we
can't
forget
about
that
.
End
of
it
.
But
in
terms
of
what
people
are
turning
to
,
there's
a
big
thing
online
.
Speaker 2
23:07
I
love
online
advocacy
and
whenever
people
say
to
me
,
oh
,
what
about
the
misinformation
online
?
I
say
,
well
,
hold
up
a
minute
.
You
have
to
ask
why
are
people
going
online
in
the
first
place
?
And
that's
because
they're
getting
misinformation
from
trusted
sources
.
Whether
that's
a
charity
,
whether
that's
a
government
body
,
whether
that's
the
NHS
or
the
GP
,
you
know
they're
getting
misinformation
from
these
sources
.
So
they're
turning
to
social
media
first
.
So
again
,
you've
got
to
take
a
step
back
and
see
it
from
a
little
bit
higher
above
.
But
once
you
get
onto
social
media
,
there
is
a
lot
of
misinformation
and
there's
a
lot
of
people
unfortunately
targeting
those
with
chronic
illness
and
obviously
the
algorithm
sends
me
a
lot
of
endometriosis
related
stuff
.
So
right
when
I
say
and
I'm
not
just
talking
about
endometriosis
,
but
I
will
just
talk
about
endometriosis
if
that
makes
sense
and
there
is
a
lot
of
people
trying
to
sell
supplements
or
programs
or
all
diets
,
all
sorts
of
things
aiming
at
targeting
people
with
endometriosis
or
PCOS
or
adeno
or
fibroids
,
no
matter
what
it
is
.
I
saw
one
and
she
was
selling
a
program
and
it
was
thousands
of
pounds
,
um
,
and
it
was
about
healing
your
womb
and
that
would
help
your
endometriosis
,
because
our
womb
energy
was
hurt
by
past
traumas
or
you
know
,
I
couldn't
even
make
sense
of
it
.
I'm
quite
an
educated
girl
.
But
basically
,
if
you
did
this
magical
thing
with
your
womb
then
you
would
heal
your
endometriosis
.
And
I
actually
messaged
her
and
I
said
would
it
work
for
me
,
because
I
haven't
got
one
,
I've
just
got
a
void
,
does
it
work
?
But
she
didn't
reply
.
Add
,
I
know
.
So
there
is
this
danger
of
people
I
mean
I
assume
they
genuinely
believe
these
things
,
they're
not
just
that
much
of
a
snake
oil
salesman
but
there
is
this
risk
of
people
that
are
willing
to
take
advantage
of
people
who
are
desperate
and
in
desperate
need
of
relief
.
And
I've
been
there
where
I
have
been
so
desperate
for
relief
that
I
will
try
anything
.
And
some
things
are
great
for
symptomatic
relief
,
some
things
can
be
brilliant
,
but
they're
not
going
to
treat
the
disease
.
Speaker 2
25:18
And
that's
always
the
little
caveat
that
seems
to
be
missing
from
all
of
this
stuff
.
You
know
it's
not
actually
going
to
stop
the
disease
growing
.
It's
not
going
to
stop
it
affecting
your
organs
.
For
example
,
and
the
one
I
see
a
lot
at
the
minute
in
the
UK
is
diet
related
.
There
is
no
endometriosis
diet
.
There
is
not
one
that
is
going
to
work
for
everybody
.
It
is
an
exceptionally
individual
disease
and
our
triggers
will
all
be
.
You
know
there
might
be
some
overlaps
and
some
common
ones
,
but
generally
they're
all
going
to
be
unique
to
us
and
our
symptoms
and
where
our
disease
is
growing
and
what
type
of
endometriosis
it
is
and
what
you
know
all
these
things
I
mean
.
Speaker 2
25:57
Yeah
,
there
are
some
guidelines
that
a
lower
inflammatory
diet
is
can
be
helpful
to
lower
the
inflammation
in
the
body
,
but
,
again
,
it's
not
going
to
reduce
your
disease
right
,
and
that
always
seems
to
be
the
piece
that's
missing
.
And
I
think
,
particularly
with
social
media
,
it
can
get
dangerous
quite
quickly
and
we
can
get
into
a
state
of
frenzy
almost
like
,
oh
,
this
is
going
to
help
,
this
is
going
to
be
amazing
,
and
we
,
especially
with
food
,
it
can
create
a
bit
of
disordered
eating
in
an
already
very
vulnerable
group
of
people
.
Yeah
,
so
yeah
,
it's
.
It's
something
to
be
really
aware
of
.
I
think
if
you
are
spending
a
lot
of
time
online
,
especially
in
chronic
illness
communities
,
is
fact
checking
,
source
checking
,
making
sure
you
know
that
if
something
is
giving
you
symptom
relief
,
that's
fantastic
.
Keep
doing
it
if
it's
not
harming
you
or
anyone
else
,
but
it
isn't
treating
the
disease
and
there
always
needs
to
be
that
element
of
getting
to
the
root
of
the
disease
.
Yeah
,
but
yeah
,
we're
just
.
We're
all
so
desperate
for
relief
,
haven't
we
?
We've
all
been
there
with
this
disease
that
we
will
try
anything
.
And
and
then
you
see
something
pop
up
on
your
algorithm
that's
promising
you
balance
in
your
body
and
all
these
buzzwords
,
and
it's
yeah
.
Speaker 2
27:13
It
took
me
a
while
.
Quite
a
few
times
I
was
like
to
my
husband
.
I
was
like
,
oh
babe
,
do
you
think
shall
I
try
this
,
or
should
I
do
that
?
Or
,
and
he
is
like
,
why
,
why
would
you
right
?
Because
it
might
work
.
And
he's
like
,
yeah
,
but
look
how
much
it
costs
,
right
?
So
,
yeah
,
it's
.
It
is
difficult
.
I
think
.
Yeah
,
diet
and
supplements
seem
to
be
the
real
ones
doing
the
rounds
at
the
minute
over
here
.
Everybody
seems
to
be
bringing
out
a
supplement
that's
targeted
at
endometriosis
,
that's
meant
to
deal
with
various
aspects
,
and
if
they're
good
for
symptom
management
,
then
cool
.
You
know
they
work
for
that
.
But
there
was
one
that
said
it
reduces
lesion
size
and
I
was
thinking
that
is
a
bold
claim
.
No
,
kidding
,
I
mean
,
if
it's
going
to
be
see
that
I
want
to
see
the
research
on
that
one
right
.
Speaker 2
28:02
It's
a
bit
nefarious
,
and
I
mean
I'm
looking
on
my
desk
because
I
actually
ordered
some
,
not
because
I
was
going
to
try
them
,
but
because
I
wanted
to
see
what
it
was
like
.
There's
a
lot
of
unsubstantiated
claims
going
on
right
now
,
unfortunately
,
and
they
always
seem
to
be
attached
to
a
product
.
Speaker 1
28:19
My
thing
about
this
is
and
this
is
maybe
just
some
of
my
advice
to
those
who
are
looking
for
,
maybe
,
symptomatic
relief
,
and
I
don't
know
how
like
your
physiotherapy
is
there
and
how
long
you
have
to
wait
or
how
accessible
it
is
to
you
over
there
that's
always
to
me
that
should
go
hand
in
hand
with
endometriosis
care
.
Speaker 1
28:41
Every
single
time
I
wish
Right
,
but
that's
even
hard
to
come
by
,
even
here
in
the
States
,
I
think
I
.
Speaker 1
28:47
I
mean
,
I
know
in
our
little
community
here
there's
pelvic
floor
physical
therapists
,
but
how
well
do
they
know
endometriosis
Like
I
have
one
in
the
area
that
I'm
in
that
I
know
of
,
not
to
say
there
aren't
more
.
So
it
is
challenging
,
right
,
but
then
when
you're
talking
nutrition
,
when
you're
talking
supplementation
,
when
you're
talking
all
these
things
that
either
you're
going
to
put
in
your
body
or
you're
going
to
spend
money
on
,
it
should
be
an
individualized
plan
for
you
,
because
you
are
an
individual
person
dealing
with
individual
needs
Somebody
and
you
and
here's
the
other
part
of
that
too
that
I
think
maybe
we
should
consider
is
the
fact
that
most
of
us
have
other
co-challenges
or
,
as
some
say
,
comorbidities
that
could
affect
our
diet
.
So
it
is
not
a
one
size
fits
all
approach
and
unless
they
can
prove
to
me
the
research
that
says
this
diet
is
going
to
eliminate
lesions
or
shrink
them
,
then
really
it's
kind
of
a
red
flag
.
They
cannot
back
that
up
with
actual
,
good
,
validated
research
.
Speaker 2
29:52
Yeah
,
definitely
,
and
I
think
,
with
the
diet
thing
as
well
,
if
it's
coming
from
somebody
who
has
no
background
in
this
stuff
,
then
do
your
research
before
going
on
it
.
Endometriosis Treatment and Recovery Discussions
Speaker 2
30:03
Some
of
these
diets
can
be
really
quite
extreme
and
they
aren't
designed
to
be
done
long
term
,
especially
,
you
know
,
anything
kind
of
an
elimination
based
diet
.
They're
not
designed
to
be
done
long
term
.
They're
designed
to
be
done
under
the
guidance
of
somebody
who
actually
knows
what
they're
talking
about
.
Whereas
you
know
social
media
,
I
feel
like
sometimes
followers
,
the
number
of
followers
,
gives
this
false
air
of
credibility
sometimes
and
it
just
can
be
be
dangerous
.
It
can
be
very
dangerous
and
it
can
create
this
sense
of
,
oh
,
I
can't
eat
that
or
I
must
eat
this
and
it
.
It's
just
another
form
of
disordered
eating
in
.
In
essence
,
yes
,
um
,
it's
,
yeah
,
it
can
get
out
of
hand
pretty
quickly
,
for
sure
yeah
,
and
I
think
too
,
like
we
shouldn't
be
living
in
fear
.
Speaker 1
30:47
No
,
right
,
and
if
we
can't
follow
a
diet
or
a
plan
,
we
shouldn't
live
in
fear
because
we
can't
do
it
,
that
our
symptoms
are
going
to
come
back
or
that
the
endometriosis
is
going
to
get
worse
.
Speaker 2
31:00
Endometriosis
is
never
your
fault
,
never
.
There
is
nothing
that
you
have
done
or
not
done
,
or
eaten
or
not
eaten
,
or
taken
or
not
taken
,
or
said
or
not
said
or
whatever
it
is
endometriosis
or
endometriosis
recurrence
never
your
fault
,
like
end
up
,
and
I
feel
like
sometimes
that's
the
line
,
this
very
fine
line
,
but
a
lot
of
these
things
are
treading
is
that
they're
edging
on
saying
if
you
don't
do
this
,
then
you
know
,
are
you
taking
it
seriously
?
I've
actually
seen
one
pretty
much
say
that
um
,
yeah
,
it's
just
no
,
no
,
no
,
endometriosis
is
never
your
fault
,
never
your
fault
and
it
also
these
supplements
.
Speaker 1
31:45
If
you
take
supplements
,
I
know
for
myself
I
have
adverse
effects
of
supplements
like
reactions
to
supplements
is
very
real
,
specifically
in
the
endometriosis
community
,
we
tend
to
be
pretty
sensitive
to
certain
foods
and
certain
supplements
,
and
although
some
people
are
like
,
well
,
they're
meant
for
good
,
that
doesn't
necessarily
mean
they're
good
for
you
,
and
so
you
have
to
keep
that
in
mind
,
and
that's
why
it
does
need
to
be
individualized
and
personalized
.
I
don't
that
,
just
as
someone
who's
very
sensitive
to
those
things
,
I'm
very
aware
of
them
,
and
so
I
think
it's
important
to
keep
that
in
mind
.
Although
it's
a
supplement
or
an
herb
,
it
can
still
have
an
adverse
effect
for
your
health
.
Speaker 2
32:26
And
again
,
that's
not
your
fault
if
it
does
.
No
,
no
,
never
your
fault
,
never
,
never
,
never
.
But
you're
right
.
Right
,
I
think
any
blanket
approach
treatment
to
endometriosis
is
a
little
bit
destined
to
fail
,
to
be
honest
,
because
it
is
so
individualized
,
um
,
and
that
includes
a
medical
approach
.
I
don't
think
you
can
say
that
what
works
for
one
person
will
work
for
another
person
,
and
you
know
,
you
can't
say
that
because
they
might
react
very
,
very
differently
.
Speaker 2
32:52
They
might
have
different
goals
.
They
might
there
.
Could
you
know
a
thousand
and
one
reasons
why
?
But
yeah
,
it
needs
to
be
an
individual
approach
.
Speaker 2
32:59
And
going
back
to
what
you
said
about
physio
,
yes
,
pelvic
floor
physios
,
I
wish
they
were
more
readily
available
here
.
They
just
aren't
.
You
can
sometimes
ask
and
they're
like
,
oh
okay
,
you
want
that
and
then
they'll
refer
you
,
but
they're
always
kind
of
surprised
,
um
,
it's
quite
rare
that
it
will
be
included
as
part
of
your
kind
of
recovery
,
despite
the
fact
that
those
vsge
endometriosis
centers
that
I
mentioned
,
they're
meant
to
be
multidisciplinary
,
they're
meant
to
be
this
great
,
in
theory
,
multidisciplinary
team
,
um
,
but
very
,
very
,
very
few
of
them
have
any
kind
of
physio
attached
to
them
,
despite
all
we
know
about
how
much
that
helps
,
not
just
endo
,
but
I
don't
know
any
kind
of
issues
in
the
pelvic
area
.
But
yeah
,
I
wish
they
were
more
readily
available
.
They're
mostly
private
over
here
,
especially
if
there's
any
kind
of
real
focus
on
any
condition
.
They
do
tend
to
be
private
and
geographically
located
in
london
or
big
,
bigger
cities
.
I
think
it's
becoming
slightly
more
known
.
Speaker 2
34:01
The
benefit
of
it
uh
,
but
it's
again
it
doesn't
seem
to
be
coming
from
the
doctors
telling
us
or
the
medical
group
you
know
institutions
telling
us
.
It
seems
to
be
what
we're
telling
each
other
,
right
,
um
,
and
that's
where
the
information
is
coming
from
.
So
it
would
be
nicer
if
they
acknowledged
that
and
pushed
that
as
part
of
endometriosis
recovery
,
because
it
does
make
a
huge
difference
,
massive
difference
.
Speaker 1
34:24
It's
definitely
changed
my
quality
of
life
and
that's
even
like
post-operatively
I've
had
good
excision
and
,
you
know
,
I
don't
have
the
endometriosis
pain
.
I've
had
a
hysterectomy
but
my
body
went
through
years
of
growing
something
that
shouldn't
have
been
in
there
and
forming
around
what
shouldn't
have
been
in
there
,
and
so
everything's
kind
of
been
rearranged
rearranged
.
And
that's
why
I
think
that
it's
so
important
that
we
see
providers
that
can
help
us
kind
of
navigate
,
rearranging
our
body
in
a
way
,
you
know
,
and
pain
for
so
long
,
right
,
so
when
you're
in
pain
,
your
muscles
clench
and
then
they're
designed
to
release
when
your
body
is
no
longer
in
pain
.
Speaker 2
35:10
But
if
you're
in
chronic
pain
for
example
,
22
years
in
my
case
like
,
your
muscles
are
never
going
to
release
,
they're
just
going
to
be
permanently
clenched
and
that
has
huge
impacts
in
your
pelvic
area
and
the
muscles
in
that
area
,
your
pelvic
floor
,
your
hips
,
you
know
all
of
these
things
are
hugely
affected
by
it
and
yeah
,
like
you
say
,
then
they
have
the
thing
growing
in
there
as
well
and
rearranging
around
it
.
That's
hugely
affected
and
that
doesn't
stop
after
surgery
.
Like
you
say
,
it's
the
next
step
and
I
think
um
Ray
,
great
advocate
,
yeah
as
well
,
she
,
she
always
says
you
know
,
surgery
is
step
one
,
excision
surgery
is
step
one
,
and
I
think
that's
where
physio
comes
in
then
as
well
.
It's
like
doing
what
we
can
do
after
that
surgery
to
to
really
continue
it
going
.
Speaker 1
35:56
And
I
actually
would
counter
that
by
saying
physiotherapy
is
step
one
to
help
recover
from
step
two
,
excision
.
And
the
only
reason
I
say
that
is
that
if
you
,
by
and
large
,
look
at
patients
who
have
started
pelvic
floor
PT
prior
to
surgery
,
their
recovery
tends
to
be
a
lot
better
and
you're
already
in
with
a
pelvic
floor
PT
who
can
help
with
adhesion
,
like
breaking
up
adhesions
post-surgery
,
and
so
I
would
even
counter
that
a
little
bit
.
I
mean
,
I
think
for
,
um
,
maybe
for
like
treatment
of
the
actual
endometriosis
,
I
would
say
surgery
,
excision
is
step
one
,
but
I
would
say
overall
treatment
,
physio
might
be
step
one
in
my
opinion
.
Speaker 2
36:44
Oh
,
I
like
that
yeah
.
Speaker 1
36:47
Because
that's
a
support
tool
.
Speaker 2
36:49
Yeah
,
makes
a
lot
of
sense
.
For
sure
,
I
had
the
opposite
,
and
so
this
is
why
I'm
agreeing
with
you
so
much
.
Actually
is
because
I
was
.
They
called
it
a
pelvic
physio
,
but
it
was
definitely
a
physio
who
was
just
working
on
my
pelvis
,
if
that
makes
sense
.
It
wasn't
a
specialist
,
um
.
And
I
said
,
oh
,
I'm
due
to
have
surgery
pretty
soon
.
It
was
the
second
surgery
,
so
quite
a
major
surgery
and
she
basically
discharged
me
from
the
service
and
said
well
,
there's
no
point
us
doing
anything
,
then
come
back
when
you've
had
your
surgery
.
And
so
now
you're
saying
that
I'm
like
,
yes
,
actually
I
agree
with
that
like
yeah
,
that
should
not
have
been
what
happened
at
all
,
should
have
been
the
other
way
completely
.
I
mean
,
she
should
have
been
a
specialist
to
start
,
but
I
wasn't
sent
to
a
specialist
,
unfortunately
.
Yeah
,
um
,
yeah
,
physio
is
definitely
a
big
tick
in
my
book
.
Speaker 1
37:38
Yeah
,
and
I
do
think
that
there's
room
and
space
for
getting
mental
health
therapies
.
I
think
we
all
need
that
and
I
think
it
will
help
us
even
downregulate
our
bodies
a
little
bit
better
from
holding
on
to
the
tension
and
the
pain
and
everything
else
that
kind
of
comes
with
endometriosis
.
It's
a
whole
body
disease
and
that
includes
your
mental
state
,
like
it
takes
a
toll
on
us
so
much
and
it's
hard
to
break
out
of
some
of
those
traumas
that
we've
experienced
or
even
processing
what's
been
said
to
us
before
and
when
we
internalize
a
lot
of
that
said
to
us
before
and
when
we
internalize
a
lot
of
that
,
our
overall
health
is
not
as
great
either
,
and
so
I
mean
,
I
think
there's
room
and
space
for
it
,
and
I
think
we
need
to
acknowledge
that
a
little
bit
more
.
Speaker 2
38:25
I
had
therapy
last
year
and
it
was
brilliant
,
but
it
was
my
choice
to
go
,
so
I
didn't
.
It
wasn't
because
the
surgeon
said
I
think
you
need
some
therapy
.
It
was
my
choice
.
Speaker 2
38:36
I
couldn't
see
my
life
beyond
the
pain
that
I
was
in
at
that
point
and
it
got
to
the
point
where
my
husband
said
,
like
you
know
,
I
love
you
,
but
I
don't
know
how
to
help
you
any
like
beyond
this
.
He
was
like
maybe
we
could
look
into
that
.
So
we
did
and
,
um
,
you
can
self-refer
here
.
So
I
self-referred
and
it
was
so
,
so
helpful
.
I
mean
it
what
.
Speaker 2
38:54
I
wasn't
necessarily
there
because
of
endometriosis
.
I
was
there
because
of
the
effect
it
had
had
on
my
life
.
I'd
given
up
my
career
,
that
I'd
lost
all
my
confidence
,
that
my
body
had
changed
so
much
that
I
felt
like
I
was
missing
out
and
that
all
my
friends
were
overtaking
me
like
it
was
all
these
things
and
they
weren't
because
of
.
You
know
,
the
endometriosis
wasn't
what
we
discussed
,
it
was
all
of
these
different
effects
and
,
yeah
,
it
was
a
huge
,
huge
help
.
Speaker 2
39:20
And
I
say
as
well
that
the
symptoms
of
endometriosis
aren't
all
physical
and
that
a
lot
of
them
are
emotional
and
mental
,
and
I
think
it's
hugely
important
that
we
recognize
that
and
are
able
to
access
help
and
support
for
that
.
But
what's
not
good
is
when
we're
told
that
those
treatments
,
those
therapies
,
will
solve
our
physical
issues
.
They
won't
.
Stress
can
be
a
huge
trigger
and
a
huge
inflammatory
trigger
which
can
then
trigger
all
sorts
of
other
things
as
well
,
but
it's
not
going
to
get
rid
of
the
disease
right
.
And
I
think
when
it's
it's
pushed
as
that
which
it
can
be
a
lot
here
in
the
UK
,
I
know
it
that's
when
it's
not
cool
,
it's
it's
not
meant
to
do
that
either
,
you
know
,
and
I
think
that's
when
it
almost
gives
the
mental
health
therapy
and
mental
health
service
almost
like
a
bit
of
a
bad
crap
,
because
it's
like
,
oh
well
,
I
tried
that
they
didn't
work
and
it's
like
,
yeah
,
but
you
weren't
actually
given
the
right
tools
to
help
with
what
you
needed
.
Speaker 1
40:19
If
that
makes
sense
,
yeah
,
absolutely
yeah
you're
not
crazy
,
but
it
this
is
the
way
that
I've
kind
of
explained
this
to
people
,
because
I've
experienced
it
myself
it
helps
you
identify
what's
actually
hurting
and
what's
a
what's
a
trauma
response
in
your
body
.
So
,
because
I
think
pain
is
it's
your
brain's
way
of
and
what's
a
trauma
response
in
your
body
?
So
because
I
think
pain
is
it's
your
brain's
way
of
saying
something's
wrong
.
So
they're
all
connected
.
So
if
you
are
upregulated
within
your
system
,
you're
at
a
heightened
state
.
Everything's
going
to
hurt
,
it's
going
to
radiate
.
Speaker 1
40:49
But
when
you
walk
through
the
process
of
what
experience
did
this
have
on
you
mentally
?
Where
were
you
able
to
find
relief
when
this
happened
?
Then
it
allows
your
body
to
release
a
little
bit
of
that
fight
or
flight
and
identify
what
is
actually
hurting
,
not
if
you
are
hurting
,
but
what
is
actually
hurting
.
Understanding and Managing Chronic Pain
Speaker 1
41:12
And
I
think
that
might
be
the
biggest
help
for
some
of
us
as
patients
who
live
with
pain
all
the
time
,
because
pain
is
a
memory
too
.
We
remember
the
pain
.
Like
you
do
something
,
say
,
you're
riding
your
bike
and
you
hit
your
knee
on
something
.
Anytime
you
go
to
ride
your
bike
,
certain
past
,
certain
areas
,
it's
going
to
automatically
trigger
your
brain
to
feel
pain
,
because
it's
a
memory
.
So
it's
interesting
how
a
lot
of
this
does
correlate
.
But
again
,
it
doesn't
mean
that
you're
not
having
pain
and
that
it's
not
severe
.
It's
how
do
we
isolate
what
is
actually
hurting
?
Speaker 2
41:49
And
for
me
,
I'm
a
massive
overthinker
,
especially
when
I'm
stressed
,
and
so
for
me
,
when
I
was
in
having
a
really
bad
flare
before
my
hysterectomy
,
I'd
be
like
is
that
my
endometriosis
pain
or
is
that
my
adenomyosis
pain
?
And
I
would
actually
try
and
isolate
it
right
down
to
like
areas
of
my
body
,
organs
,
even
like
a
cellular
level
.
My
brain
was
trying
to
visualize
this
pain
and
actually
what
I
learned
was
that
doesn't
matter
in
that
moment
.
What
matters
in
that
moment
is
what
type
of
pain
is
it
and
what
do
you
need
to
do
to
soothe
that
pain
or
get
yourself
comfortable
or
as
most
comfortable
as
you
can
be
in
that
moment
,
because
all
I'm
doing
by
doing
what
I
was
doing
,
is
just
creating
this
cycle
of
stress
pain
,
stress
,
pain
,
stress
,
pain
,
stress
,
pain
,
stress
and
it
was
just
like
spiraling
.
Speaker 2
42:34
And
so
that
was
like
a
really
key
thing
for
me
.
It
was
learning
almost
to
take
a
step
back
and
be
like
,
okay
,
I'm
in
pain
,
it's
that
type
of
pain
.
I
know
that
that
helps
with
that
type
of
pain
.
Right
,
and
it
wasn't
until
therapy
that
I
was
able
to
kind
of
have
that
clarity
of
thought
over
it
.
Before
that
it
was
just
like
I'm
in
pain
and
my
husband
would
be
like
,
okay
,
what
kind
of
pain
,
I
don't
know
,
it's
just
painful
.
And
it
was
,
you
know
,
between
us
.
We
were
in
a
cycle
and
just
kind
of
like
,
what
do
I
do
?
What
do
I
do
?
But
yeah
,
it
was
learning
to
kind
of
like
I
say
,
take
a
step
back
and
and
think
,
okay
,
but
what
can
I
do
for
myself
in
that
moment
?
Speaker 2
43:13
and
that's
not
always
easy
to
do
.
I've
actually
taught
my
husband
the
same
thing
.
So
I'm
like
,
if
it's
this
pain
,
this
helps
.
So
if
I
can't
verbalize
it
because
the
flare
is
particularly
bad
or
whatever
,
then
he's
like
,
okay
,
I
know
I
need
to
go
and
get
this
and
help
her
in
this
way
,
which
has
been
such
a
support
.
But
yeah
,
it's
definitely
not
to
be
underestimated
,
the
power
of
therapy
.
I
just
wish
that
it
wasn't
used
so
dismissively
or
as
a
tool
to
dismiss
,
which
it
often
is
here
and
I'm
sure
is
the
case
over
there
too
.
Yep
.
Speaker 1
43:41
I
would
agree
with
that
,
I
think
,
if
it
said
to
you
there's
nothing
else
I
can
do
for
you
.
Your
pain
is
in
your
head
.
Speaker 1
43:48
That
is
dismissive
,
that
is
the
number
one
red
flag
that
you
need
to
see
someone
else
because
it
is
not
in
your
head
all
the
time
and
that
is
dismissive
.
If
someone
were
to
say
to
you
you
know
I'm
not
dismissing
,
that
you
have
pain
,
but
maybe
let's
try
to
find
a
way
that
we
can
help
identify
when
this
pain
is
happening
and
how
it's
happening
,
and
that
might
help
our
treatment
plan
moving
forward
.
Speaker 2
44:15
Yeah
,
totally
different
If
it's
multidisciplinary
is
that
even
a
word
?
As
part
of
a
multidisciplinary
team
,
then
yeah
,
fantastic
.
But
what
it
can't
be
is
that
it
closes
the
door
to
your
treatment
pathway
because
they're
just
shunting
you
off
into
the
kind
of
emotional
,
mental
side
of
it
.
It
has
to
be
like
this
unified
response
.
Speaker 2
44:36
Um
,
because
our
medicine
and
our
medical
system
has
become
so
siloed
,
the
more
we've
learned
over
the
last
however
many
hundreds
,
thousands
of
years
,
right
,
we
,
it's
become
impossible
for
one
person
to
be
the
doctor
.
Speaker 2
44:49
Right
,
it
used
to
be
that
one
person
was
the
physician
for
everything
,
because
they
didn't
know
as
much
about
the
body
as
we
did
.
And
as
we've
learned
so
much
more
,
we've
had
to
split
them
off
into
all
these
different
specialists
because
we
know
so
much
more
and
that
means
we
can
treat
people
so
much
better
.
But
what's
happened
is
that
we've
created
these
silos
that
mean
that
a
multidisciplinary
disease
such
as
endometriosis
had
nowhere
really
to
sit
,
so
we've
had
to
put
it
into
the
kind
of
the
closest
fit
,
and
it's
kind
of
.
It's
still
then
shut
off
from
all
these
other
specialisms
and
knowledge
and
treatment
approaches
and
it's
kind
of
how
do
we
approach
that
?
Because
one
person
can't
know
everything
about
everything
.
So
the
closest
way
that
we
can
do
that
is
a
multidisciplinary
team
and
a
multidisciplinary
center
,
but
it's
then
making
sure
that
those
are
up
to
scratch
and
that
the
bar
is
set
high
enough
and
held
high
enough
.
Speaker 1
45:44
So
yeah
,
a
long
way
to
go
,
unfortunately
,
but
I
do
think
there
are
moves
in
the
right
direction
we
just
need
to
keep
the
momentum
you
know
,
where
I
see
the
most
impact
is
within
the
advocacy
and
in
the
support
arena
,
because
that
is
honestly
where
you're
going
to
get
a
lot
more
well-rounded
information
,
because
you're
hearing
it
from
people
who
have
experienced
it
firsthand
.
Speaker 1
46:07
And
that's
where
I
think
we
underestimate
the
value
of
community
and
community
support
,
because
more
than
likely
,
you're
not
the
only
one
that's
experienced
this
specific
thing
,
maybe
in
a
different
manner
.
But
if
you
reach
out
to
people
within
the
community
and
advocates
,
I
can
almost
guarantee
that
you're
going
to
have
a
better
outcome
of
the
next
direction
,
because
a
lot
of
us
have
been
in
that
position
.
So
that's
why
I
love
what
you're
doing
.
I
love
that
you
are
present
and
you
are
visible
and
you
are
helping
so
many
people
navigate
their
journey
in
a
positive
way
,
but
in
a
realistic
way
.
It's
not
the
toxic
positivity
,
it's
the
honest
,
real
way
.
But
there's
hope
within
the
community
and
here's
how
we
can
improve
endometriosis
care
.
Speaker 2
46:57
Yeah
,
yeah
,
thank
you
,
that
means
so
much
.
Speaker 1
47:01
Yeah
,
I
mean
,
it's
patient
driven
at
this
point
,
and
and
patients
are
starting
to
demand
better
care
,
and
I
think
we
should
.
Oh
,
yeah
,
for
sure
.
Speaker 2
47:11
And
so
yeah
,
exactly
,
and
most
of
these
providers
have
never
experienced
what
we're
experiencing
,
that's
true
,
I
always
see
those
ones
where
they
stimulate
those
little
things
that's
meant
to
stimulate
period
cramps
.
Have
you
seen
those
?
Speaker 1
47:26
videos
.
Speaker 2
47:28
And
I'm
like
how
do
I
get
one
of
those
Right
so
I
can
whack
them
on
all
the
like
future
doctors
and
get
them
to
feel
a
fraction
of
what
it
?
Speaker 1
47:37
is
A
very
strong
TENS
machine
.
Speaker 2
47:40
Is
that
all
it
is
?
Yes
,
oh
,
oh
,
future
doctors
,
watch
out
,
watch
out
,
jen's
coming
for
you
.
I'll
just
be
outside
in
Cambridge
just
like
flapping
TENS
machines
.
Speaker 1
47:56
It's
for
research
purposes
,
educational
research
.
I
recently
enjoyment
yeah
,
exactly
,
I
recently
saw
where
they
did
this
.
It
was
like
a
I
think
it
was
eight
or
ten
year
old
boy
did
this
and
he
wanted
to
because
his
mom
had
endometriosis
.
He's
like
well
I
want
to
do
,
and
he
wanted
to
because
his
mom
had
endometriosis
.
He's
like
well
,
I
want
to
do
it
.
Speaker 2
48:21
He
got
to
a
10
.
Speaker 1
48:21
I
was
shocked
,
okay
,
and
I
was
like
that's
torture
.
He
goes
I
don't
like
this
.
He
goes
this
is
what
you
go
through
every
month
.
And
she's
like
,
yeah
,
can
we
turn
it
off
now
?
And
he
didn't
cry
,
but
he
was
like
that
was
too
much
.
He's
like
you
can't
work
like
that
.
And
it
was
interesting
to
see
it
from
a
young
child's
perspective
and
a
boy
who
clearly
loved
his
mother
.
But
I've
also
seen
it
with
like
law
enforcement
,
where
they
put
it
on
.
Speaker 2
48:46
They
got
to
like
a
four
yeah
,
yeah
,
I
think
I
saw
one
and
it
was
like
an
army
couple
of
army
guys
tried
it
on
and
you
could
see
they
were
trying
so
hard
to
be
like
I
can
do
this
,
I
can
do
this
,
I
can
do
this
and
like
outdo
each
other
,
but
in
the
end
they
were
just
like
I
think
they
got
to
like
six
,
I
think
,
um
,
but
yeah
it
was
.
It
was
very
,
very
amusing
,
all
that
poor
little
boy
,
though
I
know
special
ops
training
Apparently
Endometriosis Advocacy and Heartfelt Stories
Speaker 2
49:14
that's
all
you
need
.
Speaker 2
49:14
That's
all
you
need
.
Speaker 1
49:16
That's
great
,
oh
,
my
goodness
.
Well
,
jen
,
thank
you
so
much
for
joining
me
today
and
just
sharing
your
story
and
your
advocacy
and
your
heart
behind
endometriosis
and
allowing
your
experience
to
help
guide
you
through
helping
others
,
and
that's
so
impactful
and
it
will
be
impactful
for
years
to
come
.
So
thank
you
for
sharing
your
heart
and
your
journey
and
so
much
of
your
time
.
Thank
you
,
I
was
happy
to
have
you
and
you
,
of
course
,
are
welcome
to
come
back
anytime
and
update
us
on
everything
.
Speaker 2
49:44
Thank
you
,
I'd
love
to
yes
.
Speaker 1
49:48
Well
,
until
next
time
,
everyone
continue
advocating
for
you
and
for
those
that
you
love
.