Endometriosis Was “Not That Bad” — Until Surgery Revealed the Truth | Deb Stark

When Pain Gets Dismissed

SPEAKER_00
0:00

What
if
your
surgeon
told
you
your
endometriosis
wasn't
that
bad?
Only
to
find
out
later
that
your
uterus,
bladder,
and
rectum
were
fused
together
by
the
disease.
That's
what
happened
to
Deb
Stark.
After
years
of
pain,
dismissal,
and
being
told
she
was
fine,
Deb
finally
found
a
specialist
who
understood
what
others
had
missed
and
what
he
discovered
changed
everything.
Now
she's
turning
her
experience
into
a
mission
to
help
other
women
recognize
when
something
isn't
right,
find
better
care,
and
become
their
own
strongest
advocates.
This
is
a
conversation
many
of
us
can
relate
to.
You
won't
want
to
miss
it.
So
stick
around.
Welcome
to
Indobattery,
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.
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.

Meet Deb Stark Of Wolf Woman

SPEAKER_00
1:23

Welcome
back
to
Indobattery.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table.
Today
I'm
joined
by
Deb
Stark,
the
founder
of
Wolf
Woman,
a
platform
created
from
her
own
deeply
personal
experience
with
endometriosis,
chronic
pelvic
pain,
and
the
search
for
answers.
After
years
of
being
told
that
her
pain
was
normal
or
that
there
wasn't
much
wrong,
Deb
eventually
found
a
specialist
who
recognized
the
severity
of
her
disease.
Her
second
surgery
revealed
extensive
endometriosis
throughout
her
pelvis
and
abdomen
with
her
uterus,
bladder,
and
rectum
fused
together.
That
experience
became
a
turning
point,
not
only
in
her
own
healing
journey,
but
in
her
mission
to
help
other
women
avoid
the
same
path.
Through
Wolf
Women,
Deb
is
working
to
provide
trustworthy
education,
vetted
resources,
and
practical
tools
to
help
people
better
understand
endometriosis,
prepare
for
surgery,
find
appropriate
specialists,
and
become
stronger
advocates
for
their
own
health.
Please
help
me
in
welcoming
Deb
Stark
to
the
table.
Thanks,
Deb,
so
much
for
sitting
down
with
me
today.
I
am
thrilled
to
be
able
to
just
sit
in
a
space
with
another
advocate
who
takes
things
to
a
level
of
like
passion
and
clarity
and
everything
else.
So
thanks
for
sitting
down
with
me
today.
It's
such
an
honor
to
have
you.
Thank
you
for
having
me.
I
think
that
one
of
the
things
that's
the
most
impactful
things
as
a
patient
we
can
hear
is
someone
else's
story
and
how
they
get
to
where
they
are
in
their
advocacy
because
we
all
start
advocacy
with
our
own
story.
It
always
starts
with
a
background.
It
starts
with
whether
something
was
really
good
or
really
bad,
or
maybe
something
in
between.
So
what
was
it
for
you
that
drew
you
into
this
space?
Like
what

The Surgery That Missed Everything

SPEAKER_00
3:09

is
your
story?
How
do
we
get
to
know
each
other?

SPEAKER_01
3:13

Yeah,
well,
um,
what
brought
me
to
my
advocacy
work?
I
mean,
it
I
have
a
story
that's
very
similar
to
many
other
stories
that
you've
probably
heard.
My
story's
important,
but
it's
not
unique.
Um,
you
know,
starting
with
years
of
strange
symptoms
that
I
didn't
quite
understand
or
connect,
right?
Um,
turning
into
extremely
severe
pain
that
was
crippling
that
no
one
could
figure
out,
you
know,
being
a
mystery
to
my
doctors,
um,
finding
out
through
Reddit
threads,
you
know,
reading
through
and
I'm
digging
through,
typing
my
symptoms
in
like
many
of
us
have,
you
know,
most
of
us
have,
and
finding
the
word
endometriosis
and
reading
the
stories
of
women
who
have
endometriosis
and
thinking,
uh
oh,
this
doesn't
look
this
doesn't
look
good.
Um
convincing
my
gynecologist
who
I'd
been
working
with
that
I
had
endometriosis
and
convincing
her
to
do
a
surgery
in
which
she
missed
95%
at
least
of
the
disease
that
was
in
there,
telling
me
that
I
was
fine
and
dropping
me.
Um
and
you
know,
I
think
the
moment,
um
the
moment
that
everything
changed,
it's
like
that
Hillary
Duff
song,
In
a
Moment.
It
was
taking
the
photo,
and
I
knew
after
my
second
surgery,
you
know,
or
my
first
surgery,
excuse
me,
like
something
isn't
right,
something
isn't
right.
And
then
my
body
just
was
screaming
through
that
year.
And
I
I
got
a
hold
of
the
photos
from
my
surgery,
and
I
went
to
a
specialist
that
I'd
found,
Dr.
Adam
Duke
in
Post
Falls,
Idaho.
And
I
I
showed
him
the
pictures
and
I
said,
and
I
gave
him
all
my
notes.
He
said,
something's
not
right.
Like,
please,
for
the
love
of
God,
what
is
wrong
with
me?
And
he
just,
you
know,
it
was
like
it
was
like
an
average
Tuesday
frame.
He
looks
at,
he
says,
Oh,
there's
the
endo
on
your
rectum.
Oh,
your
appendix
is
destroyed,
your
uterus
is
destroyed,
your
cervix
is
destroyed,
here's
the
and
I
just
could
not
believe
in
that
moment
that
years
and
years
had
gone
by
and
I'd
had
a
surgery
where
someone
took
photos
of
what
was
going
on,
and
no
one
could
figure
this
out.
And
it
was
so
easy
for
him
to
look
at
those
photos
and
say,
I
know
what's
wrong
with
you.
Those
are
the
words
that
every
woman
earlier
in
their
endometriosis
journey
wants
to
hear.
I
know
what's
wrong
with
you.
That's
the
golden
nugget
that
we're
all
looking
for.
Um,
and
I
mean
that
was
I
started
making
videos
online,
preparing
for
this
surgery
with
Duke.
And,
you
know,
I
was
just
like,
I'm
just
gonna
make
one
video
a
day.
I've
always
wanted,
you
know,
I'm
a
Leo.
I
love
to
talk,
you
know,
I'm
I'm
I'm
a
singer
as
kind
of
a
side
gig.
Um
and
I've
always
wanted
to
just
turn
on
the
camera
and
start
talking,
but
I
never
knew
what
I
wanted
to
talk
about.
And
I
was
like,
okay,
I've
got
something
I'm
gonna
talk
about.
And
I
didn't
really
expect
anyone
to
listen,
but
I
was
like,
I've
learned
something
crazy
that
I
need
to
like
tell
people
about
and
I
need
to
work
through
this
like
traumatic,
crazy
thing
that
happened
to
me.
So
just
turn
on
my
camera,
start
talking.
Hey,
I'm
dead,
here's
what,
you
know,
got
a
surgery.
Had
my
surgery,
and
boy,
was
it
damaged
throughout
my
entire
pelvis
and
abdomen.
I
mean,
most
of
the
organs
from
my
rectum
up
through
my
rib
cage
were
fused
together.
Um,
just
in
a
solid
lump.
It
was
crazy.
I
don't
know
how
I
was
living.
But
uh
yeah,
that
grew
as
the
months
went
by,
more
and
more
people
started
sharing
their
own
stories.
And
I
learned
that
my
story
is
not
special.
Thousands,
millions
of
women
have
the
exact
same
story
as
me,
sometimes
even
more
horrific.
And
uh
it
just
grew.
I
started
learning
more
and
I
started
sharing
what
I
learned
as
I
learned
it,
and
then
I
started
making
educational
jingles
about
endometriosis
to
try
to
bring
more
women
in
to
teach
them
what
I'd
learned
so
far,
um,
doing
skits
and
it's
just
kind
of
snowballed,
you
know?

Why Patients Must Prove Pain

SPEAKER_00
7:13

Yeah.
Well,
it's
so
interesting.
Like,
and
you're
talking
about,
you
know,
trying
to
convince
your
doctor
that
you
have
endometriosis.
And
I'm
like,
what
other
disease
subset
do
you
have
to
convince
your
doctor
that
you
have
when
it's
so
prevalent?
Like
it's
one
in
ten,
really
closer
to
one
in
seven,
is
what
some
of
the
now
statistics
are
saying,
right?
So,
like,
why
we
have
to
convince
them
that
classic
signs
of
endometriosis
are
endometriosis
and
for
them
to
investigate
is
like
shocking
to
me.
Every
single
time
I
hear
this,
I'm
like,
why
is
this
not
taken
seriously
every
single
time?
And
why
are
we
not
at
a
pediatrician
level
starting
to
look
at
these
these
symptoms
earlier
on?
Like,
where
are
we
missing
the
mark
here?
You
know,
and
as
patients,
we
are
the
ones
that
often
become
more
passionate
about
that
because
we've
lived
it,
right?
And
the
experts
are
very
passionate
as
well.
But
like,
how
do
we
start
this
earlier
so
that
you
don't
have
fused
organs?
You
know,
how
do
we
prevent
the
loss
of
being
able
to
have
kids
if
we
want,
or
the
ability
to
have
a
functioning
kidney
for
a
lot
of
people
who
lose
kidneys
and
silently
lose
their
kidneys
and
they
don't
know?
Like
it's
just
baffling
to
me
that
yes,
your
story
is
not
all
that
uncommon,
but
it's
still
like
so
impactful
and
so
powerful
because
it
paints
a
picture
of
just
how
um
how
we
are
often
not
taken
seriously
in
our
own
symptoms.
It's
like
to
convince
someone
to
take
us
seriously
is
such
a
task
and
it's
such
a
hard
task
at
hand
a
lot
of
times.
When
you
were
going
through
that
process
initially
with
your
first
provider,
was
it
you
that
brought
up
the
potential
for
endometriosis,
or
did
she
say
anything
at
all
about
it,
given
your
symptoms?

SPEAKER_01
9:07

She
said
nothing
about
it.
I
told
her
my
symptoms.
Um,
she
recommended
birth
control,
which
I'd
been
on
birth
control
for
15
years.
And
once
I
stopped
taking
it,
that's
when
the
pain
got
started.
And
some
of
the
other
like
random
bladder
infections
that
weren't
bladder
infections,
those
started
kind
of
I
was
like,
I
hopped
off
birth
control,
the
pain
got,
and
then
I
she
said,
get
back
on
birth
control.
You
were
you
were
better.
And
I
said,
Doc,
I
think
there's
something
mechanical
going
on.
Um,
and
she
did
find
an
ovarian
cyst
when
she
had
done
many,
many
ultrasounds.
Um
she's
like,
Oh,
you
got
a
cyst,
it's
fine.
And
I'm
like,
I
don't
think
a
cyst
is
big.
I
don't
think
that's
the
problem,
doc.
Like,
there's
something
going
on
in
there.
Um,
she
said
I
was
a
mystery.
I
refused
the
birth
control.
She
suggested
uh
medical
menopause.
And
I
said,
I
don't
think
that
solves
a
mechanical
problem
either.
I'm
no
doctor,
but
my
instincts
are
telling
me
that
no
pill
is
gonna
make
whatever's
happening
go
away.
Um
she
had
a
big
list
of
supplements.
I
mean,
I
I
I
found
it
on
the
Reddit
threads,
and
I
said,
Hey,
what
do
you
think
about
endometriosis?
I
don't
know,
you
know,
your
periods
doesn't
sound
like
your
periods
are
that
heavy.
And
I'm
like,
I
don't
know,
doc.
I've
been
doing
all
this
reading,
and
you
know,
and
that's
the
classic,
like,
oh,
you
better
stay
off
of
WebMD,
you
stay
off
of
Reddit.
And
I'm
like,
no,
Reddit
saved
my
life,
dude.
Like,
um,
yeah,
sorry,
that
was
a
long
answer,
but
that
was
a
journey.

SPEAKER_00
10:32

It's
true.
Like,
it's
sad
that
we
have
to,
as
patients,
be
the
ones
to
be
the
investigator
and
really
dig
into
what's
going
on.
And
and
symptoms
aren't
mysterious.
There's
a
reason
for
our
symptoms,
and
it's
whether
they're
curious
enough
to
explore
those
symptoms
and
look
at
the
bigger
picture
as
opposed
to
isolating
those
symptoms.
And
I
think
that
a
lot
of
times
within
endometriosis
care,
they
tend
to
isolate
the
symptoms
as
opposed
to
looking
at
it
as
a
full
body
thing,
because
again,
what
they're
taught
in
medical
school
is
that
it
is
a
period
disease.
If
you
don't
have
heavy,
painful
periods,
which
is
one
of
the
only
identifiers
for
a
lot
of
OBGYNs,
then
you
it's
not
endometriosis,
right?
When
it's
a
whole
body
systemic
disease,
and
now
that's
being
classified
that
at
a
federal
level,
which
is
fantastic.
Um,
maybe
we'll
get
more
recognition,
I
don't
know,
but
it's
it
is
like
one
of
those
things
where
because
they
work
in
a
silo,
they
see
symptoms
siloed,
they
don't
look
at
it
as
a
complete
picture.
And
I
think
what
that's
what's
so
hard
about
a
disease
that
ravishes
the
entire
body.
And
symptoms
vary
from
patient
to
patient.
But
it's
so
hard
when
you
don't
have
more
background
into
the
disease,
you
don't
have
a
skill
set
that
really
follows
the
disease
and
you're
not
solely
focused
on
it,
which
is
kind
of
what
led
you
to
what
you're
doing
now,
right?
Like
figuring
that
all
out
and
and
working
in
advocacy,
which
every
patient
that
does
advocacy
doesn't
do
it
for
no
reason.
Like
it's
not
easy,
it's
a
lot
of
work.

SPEAKER_01
12:16

Uh-huh.
Yeah,

Turning Research Into Clear Resources

SPEAKER_01
12:18

it
really
is.
It's
it's
been
really
crazy
as
I
learn,
right?
And
it's
been
a
few
years
of
late
nights
up,
you
know,
digging
through,
reading
research
papers,
asking
Chat
GPT,
what
does
this
word
mean,
you
know,
and
how
do
my
it
relate
to
me,
and
putting
these
maps
together
in
my
brain
and
my
own
back
end
of
resources.
And,
you
know,
I
don't
think
that
people
you
can't
just
learn
about
endometriosis,
you
can't
just
read
like
a
pamphlet
and
learn
about
endometriosis
or
have
one
conversation
with
a
doctor
and
learn
about
endometriosis.
Like
it
is
so
the
information
out
there
about
it
is
so
scattered
and
fragmented,
and
there's
a
lot
of
opinions
faked
in
because
some
stuff
hasn't
fully
been
proved
yet.
You
know,
um,
for
example,
the
the
endometriosis
and
getting
itchy,
right?
Like
for
me,
that
was
something
that
presented
where
it's
like
I'm
I
developed
all
these
random
food
allergies,
my
ears
itch
after
I
eat,
my
whole
body
just
itches,
you
know.
Um,
and
then
like
go
see
an
allergist.
Like,
oh,
you
might
be,
oh,
you're
allergic
to
everything
or
you're
allergic
to
nothing.
And
and
for
me
to
go
find
something
online
that
says
endometriosis
and
itching,
they
are
connected.
That's
not
how
I
learned
that
they
did
have
a
connection
for
me.
It
was
what
makes
you
itchy.
And
it's
like,
okay,
histamines.
What
causes
too
many
histamines,
right?
What
is
endometriosis?
Like
learning
all
of
the
different
little
like
candyland
blocks
in
between
them
and
then
going,
aha,
it's
connected,
right?
Um,
and
that's
a
lot
of
what
I
try
to
do
on
my
page.
And
you
know,
I'll
be
the
first
to
say
I'm
not
an
expert,
I'm
not
a
doctor.
I
didn't
even
go
to
college.
Um,
but
I'm
obsessed
with
the
disease.
Some
might
say
it's
unhealthy,
but
hey,
you
know,
you
gotta
get
your
kick
somewhere.
Um
so
trying
to
professionally
what
I
do
for
work,
it
has
a
lot
to
do
with
pulling
pieces
of
information
from,
let's
say,
lots
of
different
departments,
um,
trying
to
understand
a
bunch
of
tiny
pieces,
pull
them
together
into
a
cohesive
document
or
resource
and
to
help
others
learn,
hey,
here's
how
our
organization
operates
today.
Let's,
you
know,
here
it
is.
And
then
we
more
memorialize
it
and
it's
there.
And
then
anyone
curious
can
read
and
doesn't
have
to
do
that
research
again.
And
that's
a
skill
that
I'm
I'm
bringing
over
into
Wolf
Women
is
like,
hey,
I've
got
uh
probably
hundreds
of
examples
now
of
these
things
that
I've
like
put
together
by
learning
what
all
these
experts
are
saying
and
saying,
hey,
what
if
we
condense
this
into
a
60-second
video
that
links
to
a
blog
that
I
wrote?
Right.
Right.
And
I
think
people
are
gravitating
towards
it
because
the
amount
of
work
that
I
have
to
do
to
learn
what
the
heck
was
happening
in
my
body
was
astronomical,
and
not
everyone
has
the
time
or
the
energy
to
do
that.
So
for
me
to
try
to
make
it
easier
to
find
the
information
that
already
exists
is
that
that's
my
mission.

SPEAKER_00
15:32

Yeah.
It
is
hard.
Like
as
someone
who
has
been
in
this
space
for
a
little
while
now,
and
when
we
just
a
little
backstory
was
when
my
the
nonprofit
that
I'm
a
part
of,
we
went
to
go
look
for
really
good
resources
that
we
could
hand
out
at
shows
and
hand
out
to
to
patients
walking
through
endometriosis.
Like,
what
are
the
signs?
What
are
the
symptoms?
What
is
the
definition?
It
was
crazy
to
me
that
there
were
no
resources
that
you
could
print
off
that
was
a
clear,
concise
definition
with
all
the
informed
consent.
So
surgical
methods,
uh,
ways
to
help
with
symptom
management,
like
any
of
that.
It
was
crazy
that
we
couldn't
find
any
of
these
resources
online.
It
was
very
muddy,
like
the
whole
space
was
very
muddy.
It
was
like
you
click
on
this
site
and
it
gave
you
a
six-page
synopsis
of
endometriosis
and
their
viewpoints
on
it,
but
it
wasn't
very
concise.
It
wasn't
um
digestible.
Digestible.
It
was
yeah,
and
and
it
was
like
as
someone
who
is
exhausted
all
the
time
and
you
are
just
barely
making
it
day
to
day,
you
don't
have
the
energy
or
time
or
bandwidth
to
sit
there
and
read
through
all
this
and
then
decipher
exactly
what
it's
trying
to
say.
And
then
there
were
a
lot
of
times
that
the
websites
would
contradict,
like
the
the
last
part
of
the
website
would
contradict
the
first
part
of
the
the
website
or
their
descriptions.
And
so
we
just
sat
in
space
and
we're
like,
we've
got
to
create
something
similar
to
you.
Like,
we
need
to
create
something
that
is
more
it,
it's
more
set
up
for
the
patient
who
is
going
through
it,
the
patient
who
is
walking
through
some
of
the
hardest,
most
vulnerable
times
of
their
life
to
find
good,
accurate
information.
Information
that's
not
necessarily
fueled
by
emotion
and
um
opinion,
but
fueled
by
the
accuracy
of
the
studies,
by
what
research
is
actually
saying,
while
also
taking
into
mind
the
the
opinions
and
and
stories
of
the
patients,
because
those
do
matter.
Like
it,
you
know,
at
the
end
of
the
day,
like
outcomes
matter,
right?
And
so
when
we
were
putting
these
papers
together,
that
was
one
of
the
things
that
we
realized
is
that
we
don't
need
long
drawn
out
things,
we
need
very
clean,
concise,
factually
accurate
things.
And
I
think
this
space
does
not
have
a
lot
of
that,
in
my
opinion.
Yeah.

SPEAKER_01
18:08

Yeah,
it's
it's
growing,
you
know.
There's
there's
more
and
more.
And
I
don't
know
if
it's
just
because
I'm
immersed
in
the
world
now,
and
I'm
like,
oh
yeah,
there's
there's
stuff
there.
Um
but
it
seems
like
the
conversation
is
getting
a
little
bit
louder.
Um,
and
my
hope,
you
know,
my
hope
with
wolf
women
is
I
just
think
about
myself
in
the
past,
you
know,
lying
in
bed,
just
writhing
in
pain,
crying
because
the
doctor
called
me
a
mystery
again
or
tried
to
give
me
birth
control.
Um
and
just
scouring,
just
reading,
just
desperate.
Is
this
a
symptom
of
an
is
this
a
symptom
of
could
this
be,
you
know,
it's
like
trying
to
find
the
answer
that
no
one
could
give
me.
And
I
did,
I
did
it,
you
know.
And
when
I
think
about
myself
in
that
point,
and
then
I
think
about
the
magnitude,
the
the
amount
of
women
that
are
in
that
exact
same
space
that
I
was,
you
know,
they
said
they're
alone,
they're
scared,
they're
they
don't
know
what's
gonna
come,
they're
reading
the
stories,
and
the
stories
are
heartbreaking,
every
single
one
of
them
heartbreaking.
And
you
think,
is
that
gonna
be
my
story?
You
know,
and
I
know
that
I
might
need
another
surgery
someday,
you
know,
uh
endometriosis
can
come
back.
Um,
but
I
look
at
myself
now
and
I'm
like,
I'm
11
months
post-op.
I'm
thinking
about
trying
to
do
a
cart
deal.
Um
and
I
used
to
be
good
at
cartwheel
and
I
just
kind
of
stopped
moving,
you
know.
I
was
just
kind
of
hunched
over
and
it's
like
I
don't
jump
and
don't
jolt
me
and
just
out,
you
know.
Um,
and
I
would
just
I'd
like
to
reach
back
and
say,
hey,
there's
a
path
out.
And
you
don't,
it's
not
here's
what
to
do,
here's
the
protocol,
here's,
you
know,
10
steps
of
what
you
need
to
do.
Because
it
was
years
for
me.
It
was
finding
the
wrong
surgeon,
finding
the
right
surgeon,
finding,
you
know,
learning
so
much
about
the
disease
that
I
could
call
baloney
in
the
doctor's
office
if
I
needed
to,
and
be
able
to
spot
which
doctors
actually
know
what
they
need
to
know
to
help
me
and
which
ones
don't,
and
leaving
them
behind.
Um,
figuring
out
my
nutrition,
working
with
EMDR
therapy
to
do
my
uh,
you
know,
my
nervous
system,
completely
shot.
Um,
the
the
functional
doctor
to
do
the
Dutch
tests
and
to
understand
my
nutrients
and
figure
out
I
have
a
vitamin
D
deficiency.
I
mean,
there's
so
many
pelvic
floor
therapy.
It
is
once
you
gather
the
information,
then
you
know
what
you
know
enough
to
make
a
good
decision
for
yourself.
And
that's
what
Wolf
Women
is
about.
Not
to
tell
you
what
to
do,
but
to
arm
you
with
the
information
you
need
to
make
the
right
decisions
to
hopefully
dig
out
of
this
hell.
Yeah.

SPEAKER_00
21:01

Well,
and
I
think
that
a
lot
of
times,
and
this
is
what
happened
with
me,
and
and
probably
similar
to
you
in
a
lot
of
ways,
but
in
my
initial
stage
of
endometriosis,
I
actually
had
a
really
good
doctor.
She
was
very
compassionate,
but
I
was
desperate.
And
and
when
I
was
first
diagnosed,
I
mean,
this
was
2009
when
I
was
first
diagnosed,
there
wasn't
a
lot
of
information
out
there.
I
mean,
it
was
like
you
could
type
in
endometriosis,
and
very
few
websites
came
on,
maybe
because
it
was
like,
you
know,
the
start
of
the
internet,
it
felt
like
in
that
state
of
mind,
like
I
felt
like
that's
what
it
was.
I
was
like,
there's
nothing
on
the
internet,
you
know.
But
I
do
think
like
I
became
so
desperate
for
relief
that
I
was
willing
to
try
just
about
anything.
And
I
think
a
lot
of
people
with
endometriosis
get
that
way
where
they're
just
so
desperate
that
anyone,
just
take
me
back,
try
to
fix
it,
try
to
solve
the,
you
know,
the
pain,
try
to
solve
the
problem.
I'll
do
anything
to
get
to
this
point.
Without
knowing
the
long-term
ramifications
of
doing
that.
And
that's
where
I
think
like
advocacy
and
using
our
voice
and
creating
a
space
that
has
good,
accurate
information
that
does
touch
on
that
is
so
important
to
give
them
the
full
informed
consent.
Because
a
lot
of
times
you
walk
into
a
doctor's
office
and
you
don't
have
that.
You
have
what
they
know,
which
is
sometimes
give
or
take,
because
medical
school
doesn't
teach
it
all,
right?
You
know?
And
so
I
think
playing
off
of
Indo
patients'
desperate
need
for
comfort
is
so
prevalent
that
we
forget
that
sometimes
in
the
search
for
comfort
we
find
more
pain.
And
that's
one
of
the
things
that
I
have
really
tried
to
avoid
and
why
I'm
doing
what
I'm
doing
is
so
that
we
don't
have
to
elicit
more
pain
in
our
stories
and
trauma
and
multiple
surgeries.
And
so
I
think
that's
similar,
probably
in
your
story.
You
just
wanted
to
find
comfort,
you
wanted
to
find
symptoms
management
and
relief
and
figure
out
what
was
really
going
on.
And
it
took
a
little
try
or
two.
Unfortunately,
I
didn't
have
to
go
through
that.

SPEAKER_01
23:15

Yeah,
you
know,
it's
there's
so
many
folks
talking
about
endometriosis,
you
know,
and
there's
varying
levels
of
knowledge
from
from
the
folks
sharing
information.
There's
varying
um
reasons
that
they're
they
want
to
help.
Most
are
very,
you
know,
most
people
out
there
just
have
a
bleeding
heart
and
want
to
help,
right?
There's
there's
some
folks
that
have
um
something
to
sell
that
may
or
may
not
help.
And
it's
um,
I
found
it
really
challenging
to
understand
who
to
follow.
Like
what
I
wanted
was
someone
to
hold
my
hand
and
say,
this
way,
go.
And
I
did
find
some
of
that
in
my
care
team,
you
know,
my
my
surgeon
regarding
the
specific
surgery
that
I
needed,
right?
Was
was
a
guide
for
me.
My
pelvic
floor
therapy
was
a
guide
for
me.
But
I
realized
I
had
to
become
my
own
guide
because,
and
that's
what
all
women,
that's
what
you
have
to
do.
You
it
it
forces
you
to
become
strong
and
to
say,
hey,
you
know,
once
you
realize
that
no
one
knows
everything
about
endometriosis,
like
I'm
obsessed,
and
I've
probably
barely
scratched
the
surface
on
what
there
is
to
know
about
endometriosis.
But
if
you
can
listen
to
a
podcast
like
yours
and
listen
to
other
people's
stories
and
some
of
the
wisdom
that
you've
gathered
as
you've
been
a
part
of
this
world,
if
you
can
listen
to
your
surgeon,
if
you
can
listen
to
a
pelvic
floor
therapist,
a
primary
care
doctor,
you
know,
all
these
different
parties,
you
listen
to
people
like
me,
um,
sharing
what
I've
learned
so
far,
like,
and
then
use
those
all
as
tools
in
your
toolbox
and
resources
to
guide
yourself
because
everyone
has
different
goals.
Everyone,
you
know,
for
some
it's
fertility.
That
was
not
a
goal
for
me.
Uh
I
that
wasn't
important.
For
some,
it's
it's
symptom
management,
just
wanting
to
live
a
normal
life.
I
didn't
want
that.
I
said,
solve
the
problem.
I
want
the
root
of
every
single
problem.
So
uh
we
all
have
different
reasons
that
we're
doing
this
with
a
common
thread.
So
to
grab
onto
information
and
resources,
just
as
extend
the
arms
and
and
sit
at
the
center
and
make
your
own
decisions
with
good
information.
Yeah,
that's
I
mean,
that
would
be
my
biggest
piece
of
advice,
besides
don't
let
your
surgery,
but
yeah.

SPEAKER_00
25:46

This
thing
that
what
all
of
that
kind
of
led
to
was
Wolf
Woman.
Talk
to
us
a
little
bit
about
this
because
it
is
an
exciting
venture
for
those
on
the
outside
to
be
able
to
have
a
voice
to
help
other
women
kind
of
walking
through
this.
Talk
to
us
about
how
this
came
about,
what
you're
doing
with
this,
so
that
we
can
be
on
board
with
you.

SPEAKER_01
26:09

Yeah.

The Wolf Woman Surgeon Directory

SPEAKER_01
26:10

Um,
it
started
with
videos,
right?
You
know,
social
media
and
oh,
you
know,
I'm
doing
this
dance
or
whatever.
I
wasn't
dancing
back
then.
I
was
in
pain.
Um,
but
uh
I
have
done
a
couple,
I
did
one
dancing
video,
it
was
really
embarrassing.
Um,
anyways,
but
more
importantly,
starting
with
the
videos,
and
then
the
way
that
my
brain
works,
right,
is
that
like
I'm
getting
this
information
as
I
learn
things,
I'll
make
a
video
of
what
I've
learned.
And
then
I
was
like,
I
need
a
centralized
location
to
put
all
of
this
information.
Um,
I
need
a
website.
So,
and
that's
a
lot
of
what
I
did
when
I
was
recovering
from
surgery,
is
like
figuring
out
how
to
put
a
website
together.
And
I'd
say
half
of
let
me
just
tell
you
a
little
bit
about
the
website.
I'm
really
excited
about
it.
But,
you
know,
it
starts
with,
you
know,
a
home
page,
obviously,
but
um
and
there's
like
an
FAQ
of
all
of
the
most
common
questions
about
endometriosis,
trying
to
help
folks
to
understand
things
like
removing
your
uterus
isn't
going
to
remove
endometriosis
from
your
bladder,
right?
Like
some
pieces
that
are
real
aha
moments
for
me.
Um,
a
comprehensive
page
of
what
is
endometriosis
and
all
of
the
symptoms
that
I
experienced
that
could
be
maybe
not
directly
from
the
endometriosis
tissue,
but
could
be
a
downstream
effect
of
endometriosis,
which
people,
it's
a
very
popular
page.
But
my
I've
got
a
blog
and
I've
got
a
ton
of
resources
about
um,
you
know,
guide
for
how
to
tell
if
your
doctor
is
an
endometriosis
specialist,
or
questions
to
ask
during
your
consultation,
tips
to
prepare
for
endosurgery,
uh
template
for
filling
out
to
prepare
information
for
your
doctor.
Saving
the
most
exciting
for
last
though
is
uh
the
Wolf
Woman
Endometriosis
Surgeon
Directory.
Um,
and
I'm
very
aware
and
very
respectful
that
there
are
other
directories
out
there,
right?
Like
it's
it's
uh
Nancy's
Nook
is
how
I
found
Adam
Duke,
and
I
will
forever
be
grateful.
Um
but
as
I
kind
of
have
gone
through
that
process
and
then
doing
all
of
the
research
on
my
surgeon,
and
then
hearing
other
women
talking
about
like,
how
do
I
know
if
my
surgeon
is
the
right
one
for
me?
And
I'm
like,
I
will
never,
I
I
can't
tell
you
if
it's
the
right
one
for
you,
but
here's
a
way
you
can
research,
right?
Here's
like
all
these
different
places
you
can
go
look
to
put
a
picture
together
in
your
brain
of
is
this
the
right
decision
for
me?
Or
how
can
I
choose
between
these
two
surgeons?
So
what
my
directory
is,
is
it's
it's
a
list,
yes.
But
if
you
click
in
to
a
surgeon,
what
I'm
doing
is
I'm
doing
deep
research
on
each
surgeon,
not
sharing
my
opinions,
because
my
opinions
don't
matter.
I'm
just
a
chick.
Um,
but
what
what
are
these
people,
how
are
they
marketing
themselves,
right?
How
what
are
patients
saying
about
them?
What
research
are
they
doing
on
PubMed?
Are
they
deep
into
research
about
endometriosis?
Can
I
find
information
about
the
newest
technology
they're
using?
Or
if
they
work
with
a
bowel
specialist,
or
if
they
refer
you
to
PT?
What
does
an
appointment
look
like
to
diagnose?
I'm
basically
just
like
grabbing
stuff
from
all
over
the
internet,
spending
hours
researching
the
surgeons,
putting
this
paper
together,
and
then
plugging
it,
like
publishing
it
for
free
on
my
website
to
hopefully
help
women
to
save
some
time
and
energy
doing
their
resources.
I
have
other
the
sources
linked
so
they
can
go,
you
know,
look
themselves
for
the
information
in
case
I
misrepresented
anything.
But
um,
yeah,
I'm
pretty
excited
about
this
project.
I
had
20
of
the
profiles
built.
I
have
over
200
surgeons
on
the
list.
And
I'm
just
going
one
by
one
and
researching
these
surgeons
with
the
help
of
my
community.
I
put
a
put
out
a
request
to
my
community
and
said,
Hey,
tell
me
your
surgeon
surgeon
story.
Like,
tell
me
what
it
was
like
working
with
your
surgeon.
And
they've
I've
got
hundreds,
maybe
a
thousand
by
now,
of
submissions
on
the
website
of
people
sharing
good,
bad,
neutral
experiences
about
their
surgeon
and
pulling
that
in
in
addition
to
what
I
find
publicly
on
the
internet.
It's
been
a
pretty
powerful
project
that
the
community
is
working
together
on.

SPEAKER_00
30:20

Yeah.
How
if
someone
is
interested
in
like
really
helping
with
this
project,
what
is
the
best
way
for
them
to
be
able
to
engage
with
this
project?
Because
I
think
a
lot
of
people,
you
know,
have
had
great
surgeons.
Again,
some
have
had
not
great
surgeons.
Um,
and
they
want
to
have
that
voice.
They
want
to
help
the
community
as
much
as
they
can.
And
maybe
this
is
a
really
good
fit
for
them
to
help
the
community
grow
with
education.
What,
how
would
they
get
involved
with
this
project?

SPEAKER_01
30:52

Yeah,
I
mean,
the
best
way
to
get
involved
is
to
head
over
to
my
website
and
find
the
directory
and
to
fill
out
the
form
with
their
experience,
or
even
to
read
through
some
of
my
resources
and
and
give
feedback
and
say,
hey,
it'd
be
great
to
see
this
in
future
renditions.
Or,
you
know,
if
they
see
something
that's
wrong,
because
I'm
a
human
being
and
there
could
be
a
typo,
or
there
could
be,
you
know,
what
I
want
is
to
be
to
help
amplify
the
voice
of
the
community,
but
I
need
the
voice
of
the
community
to
do
that.
So
come
share
your
story.
But
I
also
want
to
be
held
accountable.
You
know,
I've
got
disclaimers
all
over
the
place,
right?
Of
do
your
own
research,
like
make
your
own
decision.
Like,
don't
just
see
someone
on
this
list
and
say,
I'm
gonna
go,
you
know,
under
the
knife
with
them
because
Deb
said
so.
Like,
I'm
not
an
expert,
I'm
just
a
chick.
Um,
you're
not
just
a
I
could
get
something
like
a
cool
chick.
Yeah.
Well
I'm
a
wolf
woman,
baby.
You're
a
wolf
woman.
Um,
so
so
I
guess
my
point
with
that
is
like
tell
me
if
I
did
something
wrong.
Tell
me
if
I
I
need
to
go
make
an
edit,
you
know.
This
is
a
community
project,
not
a
dev
project.
So,
so
communicating
with
me
via
that
form
or
commenting
on
my
videos
is
you
know
a
great
way
that
I
I
understand
what
the
community
might
need
or
how
I
might
help.
Or
yeah,
just
come
join
the
community,
honestly,
because
it's
it's
saved
me,
really.
Um,
and
so
so
many
when
we
find
there's
so
many
lovely
endometrosis
communities
out
there.
And
before
I
found
mine,
you
ever
seen
The
Hangover?
Where
and
he
has
that
like
that
speech
where
he's
like,
I
used
to
be
a
one
wolf,
I
was
a
one-man
wolf
pack,
and
then
I
met
you,
and
then
you,
and
then
you're
then
it
was
a
four-man
wolf
pack.
I
need
to
like
get
that
down
word
for
word,
but
that's
how
I
feel
about
wolf
women
is
like
wolf
is
my
spirit
animal,
but
you
know,
I
was
a
lone
wolf
before,
and
now
we're
an
entire
pack
of
wolf
women
who
are
too
informed
to
be
ignored.
Um,
and
and
we
make
good
decisions
because
we
have
good
information.
And
um
yeah,
it's
I'm
not
alone
anymore.

Community As A Nervous System Reset

SPEAKER_00
33:03

No,
and
together
we're
built
in
something
cool.
And
it's
crazy
like
when
you
can
sit
in
a
space
with
community
members,
and
there's
so
much
like
evidence
to
point
to
their
being
power
and
being
together
and
part
of
a
community.
It
resets,
it
helps
reset
the
nervous
system.
It
helps
with
you
know
doing
your
homework
and
being
informed
and
all
of
those
things.
Like
it
just
it
helps
so
much
with
that.
And
that's
one
of
the
things
that
like
I
always
talk
about
is
community
matters
so
much
in
this
space,
specifically
because
we
live
in
isolation
for
so
long,
just
trying
to
get
through
day-to-day
and
figuring
out
what's
going
on
with
us.
And
and
a
lot
of
times
for
various
reasons,
we
don't
always
want
to
talk
about
what's
going
on
with
us,
and
so
that
isolation
creeps
in
and
you're
not
at
your
best.
And
so
being
part
of
a
community
can
bring
that
isolation
to
the
surface
and
be
like,
I
can't
do
this
alone.
And
and
there's
healing
to
be
done
in
that.
And
so
I
love
that
you're
bringing
that
community
together.
I
mean,
there's
always
risks
associated
with
doing
that,
obviously.
Like,
you
know,
not
everyone's
gonna
get
along
in
a
community.
Let's
be
honest,
right?
Like,
we're
gonna
be
real
about
this.
This
is
this
is
honesty.
Like,
not
everyone
gets
along,
and
it's
not
no
one,
not
everyone's
gonna
see
eye
to
eye.
But
I
do
think
that
there's
power
in
bringing
the
community
together
to
really
make
it
more
powerful
and
more
impactful
and
create
change.
Because
I
think
if
you
ask
a
lot
of
the
surgeons
and
the
doctors,
they're
gonna
tell
you
a
lot
of
the
change
has
happened
because
of
the
advocates,
because
of
the
patients,
because
they're
becoming
more
informed,
because
they're
going
before,
you
know,
Senates
and
and
other
community
members
and
doctors
and
saying,
We're
done
with
this.
We're
status
quo
is
not
good
enough
for
us
anymore.
And
they're
inciting
this
change.
And
so
that's
what's
so
impactful
about
what
you're
doing
is
you're
inviting
that
community
to
create
the
change
that
needs
to
happen
for
future
generations,
which
is
all
we
can
hope
for
half
the
time,
right?
Like,
yeah,
it's
that
little
step
and
everyone
using
their
skills,
gifts,
and
abilities
to
create
change
that
makes
it
better
for
not
only
us,
but
future
generations.
And
as
a
parent,
I
appreciate
that.

SPEAKER_01
35:20

Yeah,
I
uh
there's
a
uh
quote,
I
don't
know
if
I'll
get
it
exactly
right.
It's
on
my
website.
Oh
it's
the
the
strength
of
the
pack
is
the
wolf,
and
the
strength
of
the
wolf
is
the
pack
from
the
the
jungle
book,
right?
You
know,
and
it's
it's
crazy
because
you
think
of
individuals
and
then
you
think
of
of
groups,
you
know,
societies,
communities,
and
people
feel,
or
I
in
the
past
have
felt
insignificant,
right,
in
life.
I
think
we
all
feel
like
that
sometimes.
We're
one
of
billions,
but
um
the
pack
doesn't
exist
without
each
individual
person
as
a
part
of
it,
and
we're
all
equally
important,
you
know,
and
it's
it
brings
me
comfort
to
be
a
part
of
a
pack
and
to
realize
like
my
voice
matters,
you
know,
and
together
we're
hell
of
a
lot
stronger.

SPEAKER_00
36:09

So
true.
It's
so
true.
I
just
even
think
about
like
being
part
of
the
nonprofit
space
and
the
reason
we
created
that
community.
And
some
of
these
women
are
some
of
my
closest,
dearest
friends
now
because
they
get
it.
We
don't
have
to
justify
when
we
don't
feel
good,
we
just
don't
feel
good.
Like
we
don't
have
to
feel
bad
that
we
can't
make
something
that
we
had
really
wanted
to
do
because
we
aren't
in
a
space
to
be
able
to.
We
don't
feel
good,
something
you
know,
like
you
don't
have
to
make
an
excuse
why
you
don't
feel
good
or
why
you
can't
do
something.
We
just
get
it,
and
there's
something
so
freeing
and
so
powerful
in
that
space.
Like
there,
it's
so
freeing
to
be
able
to
say,
I
can't
right
now.
My
bandwidth
is
shot,
I
am
overstimulated,
I'm
in
pain,
I
don't
feel
good,
and
then
be
like,
I
get
it.
Say
no
more,
say
no
more.
Whereas
I
think
with
a
lot
of
other
people
and
like
just
even
in
our
inner
circle,
whether
they're
friends
or
family
or
whatever,
we
feel
like
we
have
to
justify
the
way
we
feel
and
why
we
can't
do
something.
Like
our
brain
isn't
enough
to
not
do
something.
We
have
to
justify
how
bad
it
is
and
why
we
can't
do
it
a
lot
of
times,
or
guilty
for
not
being
able
to
do
something,
you
know.
So
just
people
that
get
it,
that
understand
it,
I
think
make
a
huge
difference
in
our
overall
quality
of
life.
And
I
think
it
just
helps
our
nervous
system
too,
to
not
constantly
be
in
a
fight
of
like
trying
to
explain
things.

SPEAKER_01
37:46

Yeah,
that's
been
a
big
um
part
of
my
journey,
all
of
our
journeys,
you
know.
But
it's
funny
because
yesterday
I
was
supposed
to
go
out
with
friends
and
and
I
canceled,
you
know.
I
I've
done
so
much.
Uh
my
nervous
system
gets
so,
you
know,
my
pain
isn't
too
bad
most
days
nowadays,
but
um,
but
my
nervous
system
is
still,
I'm
dealing
with
the
the
surgical
trauma,
right?
And
the
nervous
system
response
that
comes
with
years
of
chronic
pain.
And
um
I've
done
so
many
things
in
a
row,
social
events,
that
it
was
like
I
can
feel
myself
working
up
to
an
edge
that
I
don't
think
I'm
is
gonna
be
good
for
me.
So
I'm
learning.
I
was
really
proud
of
myself
yesterday,
even
though
I
felt
really
guilty
too.
It's
like
an
inner
turmoil
where
I'm
like,
I'm
gonna
decline.
And
not
because
I
don't
have
to
wait
until
I'm
crying
on
the
floor
because
I
pushed
myself
too
hard
and
worked
myself
into
a
flare
to
say
no.
I
can
just
say
no.
And
I
lied
in
bed
and
I
watched
the
most
heartwarming
videos
of
that
guy
who
mows
people's
lawns
and
the
old
lady
and
she's
crying,
she's
so
grateful.
Oh
my
god,
and
you
know,
the
soldiers
coming
home
to
their
dogs,
and
their
dogs
are
so
and
I
just
lay
there
and
I
just
cried,
and
then
I
walked
outside
and
and
pet
my
chickens
and
my
goats,
and
it
was
like,
this
is
what
I
needed.
Like,
I
don't
need
to
do
what
everybody
else
wants
me
to
do.
Like,
life
is
hard.
I'm
chronically
ill,
and
like
just
turn
off
the
brain
and
enjoy
some
like
serotonin.

SPEAKER_00
39:16

Yes.
I
and
it's
also
good
to
have
people
in
your
space
remind
you
of
that,
like
that
it's
okay
to
do
that.
Like
it
is
okay
to
not
be
okay.
It
is
okay
to
like
give
yourself
grace
to
step
back,
take
a
breath.
You
know,
I
think
that's
something
that
I've
had
to
I've
really
struggled
with.
I
am
a
workaholic
if
given
that.
I'm
also
a
perfectionist.
Like,
what
is
going
on?
Like
those
of
us
who
are
perfectionists
oftentimes
have
limitations
with
our
bodies,
and
so
it
gets
it's
challenging
because,
and
you
know,
I've
said
it
before,
I
have
the
the
buffet
plate
theory,
which
is
like
we
as
chronic
illness
patients
are
given
the
six-inch
buffet
plate,
whereas
other
people
might
get
a
12-inch
buffet
plate.
And
if
we
try
to
fill
everything
on
our
six-inch
um
buffet
plate
that
the
12-inch
plate
fits,
it's
gonna
overflow
and
you're
not
gonna
get
the
the
quality
that
you
were
looking
for.
You're
gonna
mix
up
flavors
and
it's
gonna
be
overwhelming
and
it's
gonna
spill
off,
and
you
have
to
clean
your
plate.
You
know
what
I
mean?
That's
kind
of
the
theory
of
like
we
can't
take
too
much
on,
and
it's
okay
to
take
little
bits
here
and
there
and
be
done
with
it,
and
then
you
then
you
can
add
something
else
to
your
plate,
but
to
continue
adding
when
you
don't
have
the
space
is
not
helpful,
it's
overwhelming.
And
we
need
people
in
our
space
who
get
it,
who
understand
it,
who
are
there
to
continue
to
remind
us
that
it's
okay
to
step
back
and
say
no.
And
I
feel
like
even
in
our
research
to
find
care,
it's
okay
to
step
back
and
say,
I
need
help,
I
need
support.
And
I
think
that's
what
you're
doing
with
Wolf
Woman,
you
know,
and
and
many
other
advocates
are
doing
in
their
own
space,
but
this
is
such
a
great
way
to
give
reprieve
to
those
walking
through
the
trenches.
Is
like
they
don't
have
to
do
all
the
research
themselves.
This
is
a
tool
that
is
a
resource
that
isn't
stated
just
from
opinions,
but
gives
the
facts,
gives
you
good
clarity
on
specific
providers,
and
you've
done
the
work
for
them,
which
is
giving
back
to
a
community
when
you
wish
you
probably
had
that
way
back
in
the
day.

SPEAKER_01
41:34

Oh
my
God.
Yeah,
you
know,
and
I
know
this
isn't
the
warmest
and
fuzziest
thing
in
my
brain,
but
it's
also,
you
know,
I
am
very
passionate
about
efficiency.
Um,
and
a
lot
of
what
I
do
at
work
is
I'm
I'm
driving
efficiency
for
organizations.
And
for
me
to
go
through
all
those
years
of
learning,
and
then
for
every
other
woman
in
the
freaking
universe
with
Endow
to
have
to
go
through
all
of
that,
like
it's
inefficient.
Like
document,
stick
it
there,
and
then
people
people
can
come
learn
what
I've
learned,
and
then
they
can
spend
the
next
four
years
learning
even
more
instead
of
just
g
get
you
know
getting
the
basics
down.
So
yeah,
I
mean,
everything
in
my
universe
between
the
efficiency,
the
the
sorrow
for
the
past
version
of
myself,
the
you
know,
the
power
of
of
a
community,
I
mean,
there's
the
universe
screamed
at
me
that
I
needed
to
use
my
voice,
you
know.
I
I
don't
think
there
was
another
option,
and
I
don't
plan
on
stopping,
you
know.
Um
it's
just
part
of
me
now.

SPEAKER_00
42:44

And
to
to
preface
this
by
saying
you
doing
like
the
surgeons
list,
this
is
not
surgeons
paying
to
be
on
your
list.
This
is
you
know
looking
at
all
the
objective,
like
learning
about
the
practice,
the
way
they
work,
the
what
the
patient
insight
is,
you
know,
it's
not
a
pay-to-play
platform.
And
so
if
you
think
it
is,
if
some
if
you
you
know,
you're
wrong,
this
is
a
way
for
you
to
get
insight
into
different
surgeons
and
how
they
practice,
and
they
don't
have
a
say
necessarily
in
like
how
it
plays
out
on
the
on
the
website.
These
are
just
what
you're
able
to
find,
which
may
not
encompass
the
full
picture.
You
still
have
to
do
a
little
bit
of
that
research,
but
this
might
give
you
a
good
base
place
to
start
and
then
continue
to
look
at
the
various
things
that
would
change
your
care's
outcome.
Like
I
always
say,
I
can
give
you
resources
and
tools,
but
you
have
to
figure
out
what's
gonna
be
best
for
your
care.
It's
it
is
not
a
one
size
fits
all,
it's
not
a
linear
process,
it
is
a
very
up
and
down
roller
coaster
process.
But
let's
give
some
tools
to
make
it
a
little
bit
easier
so
it's
not
such
big
drops.

SPEAKER_01
44:04

You
know?
Yeah.
Yeah,
that's
that's
well
said
because
yeah,
there's
a
lot
of
information
I
don't
have
and
I
don't
know,
you
know.
But
if
you
want
to
know
what
I
know,
you
go
to
my
website
and
that's
what
I've
got
so
far
and
and
what's
on
my
social
media.
And
if
I
learn
more,
then
I'll
I'll
I'll
check
my
resources,
provide
sources
to
studies
um
as
is
appropriate,
and
stick
them
up
for
you.

SPEAKER_00
44:31

Yeah.
And
put
your
voice
in
there.
Let
your
voice
matter
too
in
this
process.
Like
go
to
the
website,
fill
out
the
form,
and
yes,
please,
please
be
a
part
of
it.

SPEAKER_01
44:41

Yeah.
Yeah.
And
and
I'm
learning
so
much
too
from
the
community,
you
know.
Oftentimes
I
I'll
get
a
lead
on
on
piece
of
information.
Maybe
that's
a
surgeon,
or
maybe
that's
uh
a
new
treatment
that
is
potentially
coming,
or
um,
and
that's
and
you
know,
it's
a
seed.
The
person
might
not
know
everything,
but
it's
like,
oh,
I'm
getting
all
these
pieces
of
information.
I
can
grab
onto
some
of
those
and
you
know,
and
plant
them
and
water
them
and
learn
and
and
and
share.
Um,
so
it's
I'm
I'm
like
a
funnel,
you
know.
It's
like
drop
your
information
to
me,
I'll
research
them
one
by
one
with
the
help
from
the
community
and
all
the
experts
that
are
talking
out
there,
and
then
make
it
public
so
that
everyone
else
can
see
it.
It's
pretty
cool.

SPEAKER_00
45:28

I
like
it.
It
is
fun.

Mast Cells Histamines And Hidden Symptoms

SPEAKER_00
45:30

I
love
looking
at
those
things.
What
is
one
piece
of
research
that
blew
your
mind
that
just
every
time
you
think
about
this
research,
you're
like,
oh,
I'm
so
glad
I
found
that.
I
mean,
there's
probably
a
lot,
but
is
there
one
specific
one
that
you
were
like
it
just
floored
you
when
you
looked
at
it?

SPEAKER_01
45:49

I'm
trying
to
remember.
I
need
to
go
back
into
my
notes
and
make
sure
I'm
getting
like
the
names
of
the
people
and
the
names
of
the
research,
right?
I'm
always
very
afraid
I'll
misquote
something
going
by
memory
with
those
details.
But
I
mean,
the
there
was
a
study
about,
I
mean,
many
studies,
but
the
way
that
mast
cells
are
are
I'm
not
a
scientist,
so
I'm
afraid
sometimes
I
accidentally
say
like
sub
out
the
wrong
word,
so
I'm
like
very
cautious.
But
the
way
that
that
mast
cells
react
to
endometriosis
in
the
body
and
the
chain
reaction
that
that
sets
off
is
just
so
many
of
our
symptoms
come
from
this.
I
mean,
so
the
study
was
regarding
the
amount
of
mast
cells
that
that
live
in
endometriosis
tissue
or
near
endometriosis
tissue,
there's
there's
a
correlation
there.
And
being
able
to
prove
that
it
built
a
bridge
between
a
lot
of
the
other
theories
that
I
had
had.
Theories
that
the
itchiness
that
I
was
experiencing,
the
histamine,
the
swelling,
that
so
much
of
that
was
related
to
my
endometriosis.
I
didn't
find
a
lot
of
studies
that's
like
endometriosis
causes,
you
know,
itching,
right?
Um,
but
to
find
the
study
that
says,
hey,
mast
cells
are
definitely
a
thing
with
endometriosis
and
histamines
in
another
study
are
definitely
a
thing
with
mast
cells.
And
therefore,
endometriosis
and
histamines
are
connected.
Uh
that
was
one
of
my
biggest
aha
moments,
like
the
the
time
I
was
spending
trying
to
figure
out
what
allergies
I
had
when
really
I
needed
to,
for
my
specific
body,
lower
the
amount
of
high
histamine
foods
that
I
was
eating
per
day.
And
I
brought
on
a
DAO
supplement
to
help
me
process
my
histamines
before
they
hit
my
gut.
And
now
I
can,
it's
not
an
issue
for
me,
you
know,
and
that's
crazy.
Like
that
one
study
just
changed
my
mind.

SPEAKER_00
47:50

Uh-huh.
Yeah.
Yeah.
I,
you
know,
and
it's
interesting
because
like
we
learn
all
this
stuff
oftentimes
after
our
surgeries.
So
I
didn't
realize,
like,
even
for
me,
I
have
EDS,
and
I
had
no
idea
what
EDS
even
was.
Like,
not
how
closely
related
or
you
know,
how
not
related,
but
how
how
closely
they
interact
with
each
other,
the
endometriosis
and
EDS,
like
how
prevalent
they
are
in
co
co-conditions.
And
so
I
didn't
realize
this
until
much
later.
And
so
a
lot
of
my
symptoms
I
was
feeling
weren't
necessarily
endo
symptoms,
but
I
couldn't
really
figure
out
why
I
was
in
pain
still
until
I
figured
this
out
and
I
was
like,
this
changes
everything.
To
understand
your
body
changes
everything.
It's
just
so
crazy.
Like
the
way
that
you
can
now
advocate
for
yourself,
you
can
advocate
for
your
care,
you
can
change
the
direction
of
your
care
just
by
understanding
your
body
better.
So
the
research
aspect
of
it
is
something
I
absolutely
love
doing
because
I
learned
so
much.

SPEAKER_01
48:56

So
much.
Oh
my
God.
And
what's
cool
with
doing
these
um
these
surgeon
profiles
is
I'm
coming
across
a
lot
more
studies
that
I
get
to
go
through
and
read
and
understand.
So
um
not
just
learning
about
the
surgeons,
but
giving,
you
know,
just
there's
a
lot
of
conversation
out
there
about
there
not
being
enough
research
on
endometriosis
and
women's
health.
This
is
true.
I'm
not,
I'm
not
gonna
say
it's
not
true,
but
there's
a
lot
of
question
marks
and
things
that
we
don't
know.
But
there's
a
lot
of
research
out
there,
and
I'm
finding
more
and
more
and
more,
and
it's
just
crazy.
Um,
if
we
could
take
the
amount
of
knowledge
that
exists
about
endometriosis
now
and
delivered
it
to
the
hands
of
every
gynecologist
that's
the
front
line
for
a
woman
with
pelvic
pain
and
endometriosis
symptoms,
yeah,
it'd
be
a
whole
different
world.
Like
we
need
research
dollars,
but
we
need
to
take
that
research
and
put
it
into
the
hands
of
the
people
or
the
brains
of
the
people
that
that
we're
supposed
to
go
to
when
we
hurt.

SPEAKER_00
50:03

Yeah.
And
I
want
to
preface
this
also
by
saying
like
not
all
research
is
created
equal.
There
is
a
lot
of
research
out
there
that
um
is
kind
of
like
throwing
lipstick
on
a
pig
type
theory.
Like
it
seems
like
it's
really
good
research,
but
it's
been
done
and
it's
old
research,
and
it
they
just
rephrased
it
to
look
prettier
and
have
like
the
the
words
and
like
that
target
certain
demographics.
Like
it
not
all
research
is
good
research.
So
you
do
need
to
know
how
to
research
these
things
and
ask
questions
to
those
experts.
Ask
them
for
clarification,
ask
them
for
better
understanding.
I
do
that
all
the
time.
Like
with
friends
in
this
space
who
who
are
experts,
I
will
message
and
say,
Hey,
I
looked
at
this
research.
Can
you
help
me?
What
do
you
think
about
this?
Is
that
often
what
I
say?
I
say,
What
do
you
think
about
this
research?
Or
what
do
you
think
about
this?
And
to
get
their
synopsis
of
it
gives
me
better
clarity
because
they're
looking
at
research
from
a
different
lens
than
I
am.
I'm
not
an
expert
when
it
comes
to
looking
at
research.
I'm
not
an
expert
at
understanding
it
all
the
time,
but
asking
the
questions
gives
me
better
clarity.
And
I
understand
that
not
everyone
has
that
accessible
to
them,
but
a
lot
of
times
these
experts
will
answer
you
if
you
have
questions
on
research.
They're
gonna
they
love
it
just
as
much.
They
want
to
bring
clarity
to
it.
So
if
you
DM
them
or
whatever
and
ask
them
about
it,
they're
gonna
give
you
better
clarity
on
that.
So
just
throwing
that
out
there,
they
don't
want
to
leave
you
in
the
wind
either.
Like
they're
passionate,
just
as
passionate
as
we
are.

SPEAKER_01
51:36

So
yeah,
that's
great
advice.
You
know,
it's
funny
how
when
I
first
kind
of
wanted
to
get
into
advocacy,
and
I
was
like,
what
do
I
do?
I
don't
know,
make
videos,
right?
And
at
some
point
I
was
just
I
just
made
a
list
of
everyone
that
I
could
figure
out
in
my
area,
like
within
a
few
states
that
had
anything
attached
to
endometriosis
in
their
name.
And
I
just
started
emailing
people.
I
was
like,
hey,
you
know,
here's
what
I
think.
Like,
what
do
you
think?
Um,
and
I
ended
up
getting,
I
mean,
just
in
the
first
few
months
after
my
surgery,
getting
connected,
you
know.
I'm
like,
every
couple
weeks
I
meet
with
one
of
the
lead
researchers
at
WSU
about
endometriosis.
And
I'm
like,
six
months
or
you
know,
a
year
ago,
I
never
would
have
thought
I'd
be
like
on
the
phone
regularly
with
a
researcher
from
a
major
college,
you
know.
Um
it's
funny
because
you
earlier
in
my
journey,
I
felt
like
these
people
were
just
these
like
untouchable
like
entities
in
the
like
metaphorical
sky,
but
really
they're
just
people,
they're
just
passionate
people
who
have
dedicated
their
lives
and
careers
to
solving
the
same
problem
that
we
want
to
solve
from
different
angles.
And
like
you
email
people,
they
chances
are
they
want
to
talk.

SPEAKER_00
52:51

Yeah,
yeah,
they're
passionate.
It's
pretty
cool.
It's
really
cool.
Yeah,
they're
really
passionate.
Yeah,
it's
it's
one
of
the
things
that
I
love
most
about
this
community
is
that
they
are
so
passionate.
It's
not
like
you're
seeing
someone
that's
just
doing
it
just
to
make
a
paycheck
because
a
lot
of
them
don't
always
make
a
big
paycheck.
Like
that's
the
shocking
thing
people
don't
understand
is
like
they're
not
like
millionaires.
I
mean,
there
are
some,
I'm
sure,
but
like
a
lot
of
them
are
are
just
wanting
to
do
right
by
their
patients,
and
so
I
think
they
always
want
to
give
the
best
information
they
can
to
patients
going
through
this,
knowing
that
it's
so
hard
for
us
to
navigate
as
is,
and
with
the
information
out
there,
and
a
lot
of
information
that's
a
a
little
hard
to
decipher
and
and
weed
through.
And
so
I
think
a
lot
of
them
are
are
willing
to
do
that.
But

Hope Cartwheels And Better Care

SPEAKER_00
53:39

what
are
what
is
something
that
you
feel
in
your
bones
you
are
just
so
hopeful
for?

SPEAKER_01
53:45

I
am
so
hopeful
for
I
mean,
in
ten
years,
if
every
woman
knew
no,
I
don't
I
don't
know
everything,
but
if
every
woman
knew
as
much
as
I
know
about
endometriosis,
then
it
would
change
the
world
for
us.
I
mean,
if
I
would
have
known
four
years
ago
what
I
know
now,
I
might
have
spared
some
organs,
some
severe
trauma,
you
know,
tens
of
thousands
of
dollars
in
medical
bills.
Um
my
bladder
and
my
bowels
might
not
be
permanently
damaged.
I
mean,
that
is
that's
my
goal.
That's
my
hope,
is
that
so
many
women
know
so
much
about
the
disease
and
that
we
can
get
that
education
into
the
hands
of
the
right
people
that
can
help.
That,
you
know,
there's
a
million
ways
to
tackle
this
problem.
But
if
we
can
get
the
right
people
the
right
information,
then
we
can
save
lives,
you
know.
There's
hope,
you
know.
It's
like
for
so
many
of
us,
there's
no
hope.
And
we're
just
once
you
look
into
the
eyes
of
the
beast
of
the
thought
that
you
are
gonna
be
lying
in
bed
in
pain
forever
and
no
one
understands
and
no
one's
gonna
be
able
to
solve
it
for
you.
That
is
a
dark,
dark
eye
to
look
into,
you
know.
Um,
but
to
educate
that
there's
another
side
of
that,
you
know,
they
found
what
was
wrong
with
me.
They
removed
what
was
wrong
with
me.
I
figured
out
that
between
the
surgery
and
all
of
the
different
therapies
and
the
diet
and
the
supplements,
like
I'm
gonna
do
my
first
cartwheel
in
years.
Like,
I'm
gonna
do
it.
And
and
I'm
I
just
I'm
hopeful
that
not
only
will
people
have
the
information
to
fight
for
themselves,
but
they'll
have
the
information
to
know
that
there
is
light
on
the
other
side,
and
it
might
not
be
perfect,
and
you
might
still
pee
funny,
and
you
might,
you
know,
like
you
might
have
issues
with
all
kinds
of
things,
but
like
life
is
worth
living,
and
people
need
to
know
that.

SPEAKER_00
55:56

Absolutely,
absolutely.
Deb,
it
has
been
such
an
honor
to
sit
with
you,
and
I
love
sitting
with
other
advocates,
it
fuels
me,
it
inspires
me,
and
it
just
continues
to
reiterate
why
we
do
what
we
do.
And
sometimes
I
think
it
can
be
very
tiring,
and
advocacy
can
be
isolating
at
times,
and
so
to
sit
in
space
with
other
advocates
and
other
people
who
just
get
it,
like
we
said,
makes
such
a
big
difference
and
it
continues
to
inspire
me
to
keep
going,
even
when
I'm
tired
and
I'm
and
life
gets
like
this
community
is
such
a
great
community
to
be
a
part
of.
And
I'm
thrilled
that
I
got
the
chance
to
sit
down
with
you
and
to
talk
to
you
more
and
learn
from
you
and
to
feel
the
energy
that
you
have
giving
into
this
community.
It's
just
it's
it
inspires
me.
So
thank
you
for
taking
the
time
to
do
that
because
it's
it's
been
so
fun
for
me.

SPEAKER_01
56:50

Oh
my
gosh,
me
too.
Thank
you
for
your
kind
words,
and
thank
you
so
much
for
having
me.
I
think
it's
wonderful
that
you
are
bringing
so
many
voices
together.
And
yeah,
I
really
appreciate
you
letting
me
be
a
part
of
it.

SPEAKER_00
57:01

Yeah,
I
would
welcome
you
back
anytime.
I'm
excited
to
see
where
Wolf
Woman
goes.

Share Feedback And Keep Advocating

SPEAKER_00
57:07

I'm
excited
to
see
where
the
surgeon
list
goes,
and
I
want
to
hear
other
people's
feedback.
Like,
tell
tell
us
like
how
this
has
impacted
you
because
I
think
that
we
need
to
know
if
this
is
helpful.
And
and
I
think
you
would
agree
with
that.
Like,
if
if
this
list
is
helpful,
like
let
us
know.
We
want
to
hear
how
it's
impacted
you
and
how
it's
um
changed
your
trajectory
in
your
journey.
So
leave
a
comment
on
either
page
in
Do
Battery
or
Wolf
Woman.
Like,
let
us
know
because
I
I'm
really
curious
to
see
how
this
advocacy
has
impacted
you
because
I
know
it
will.
But
Deb,
thank
you
so
much.
Thanks
for
taking
the
time
and
and
you're
welcome
back
anytime.
Anytime.
Thank
you
so
much.
I'm
looking
forward
to
it.
Yes.
Until
next
time,
everyone,
continue
advocating
for
you
and
for
others.