What happens when motherhood and chronic illness collide, and how do we turn that into advocacy?

Parenting with Chronic Illness

SPEAKER_01
0:00

Parenting
is
hard.
Parenting
with
endometriosis?
It's
a
daily
balancing
act
between
showing
up
for
your
family
and
finding
the
strength
to
show
up
for
yourself.
In
this
episode,
we
open
up
about
the
reality
of
raising
kids
while
managing
a
chronic
illness,
the
guilt,
the
resilience,
and
the
quiet
victories
that
often
go
unseen.
And
we
ask,
how
does
this
experience
shape
the
way
we
advocate?

SPEAKER_00
0:25

Not
just
for
ourselves,
but
for
everyone
walking
this
path.
After
talking
to
you
and
we
had
many
conversations,
I
reached
out.
And
one
of
the
things
I
did
get
to
do
in
November
last
year,
I
went
to
that
medical
school
and
sat
down
and
told
my
story
to
the
medical
students
who
were
just
about
to
go
into
the
residency
programs.
And
I
just
wanted
them
to
know
that
I'm
not
your
typical
case.
I
mean,
no
one
really
is.
I
don't
know.
Like
there's
yeah.
Is
there
really
a
textbook
case
of
endo?
But
I
will
tell
you,
I
was
so
hopeful
coming
out
of
that
because
in
my
telling
them,
they
would
raise
their
hands,
I
would
tell
them
my
symptoms
first
and
they
would
kind
of
raise
their
hand
and
I
told
them
that
I
had
heavy
bleeding
and
other
things.
And
one
of
them
raised
their
hand
and
said,
Do
you
have
adenomyiosis?
I
was
like,
ding,
ding,
ding.
I
was
like,
yes,
like
somebody
is
paying
attention,
you
know,
and
they're
getting,
they're
starting
to
get
the
correct
information.
If
you
look
at
the
information
they're
getting
now,
it's
10
to
15
years
behind.
If
you
look
at
endo
10
to
15
years
ago,
they
still
didn't
know.
So
I
was
just
able
to
talk
to
them
and
explain
to
them
that
every
individual
case
is
different.
They
ask
me
all
the
time,
Mom,
am
I
gonna
have
endometriosis?

SPEAKER_01
1:25

Mom,
am
I
gonna
be
like
this?
And
I
think
it
would
so
hard.
And
I
understand
why
there
are
some
people
who
have
endometriosis
that
are
like,
I
don't
want
to
have
kids.

SPEAKER_00
1:33

I
don't
want
to
pass
this
on.
I
open
up
the
card
and
I
just
read
the
first
part
of
it
and
I
just
start
bawling,
like
right
there
in
Starbucks.
And
my
husband
comes
back
and
he's
like,
What
just
happened?
He's
like,
What
do
you
want
you
crying?
And
I
hold,
I
just
look
at
him
and
hold
up
this
bracelet
in
Starbucks
and
he's
like,
What
is
happening?
Like,
and
I
but
it
was
like
there
is
a
community
that
someone
cares
about
indoor.
I
can
I
can
talk
about
this
with
other
people
because
when
people
find
out
about
breast
cancer,
right,
people
know
what
to
do.

Introducing Indobattery and Nikki

SPEAKER_01
2:05

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
Indometriosis
drains
us.
Welcome
back
to
Indobattery.
Grab
your
cup
of
coffee
or
your
cup
of
tea
and
join
me
at
the
table.
Today
I
am
joined
at
the
table
by
Nikki
Phillips.
Nikki
is
not
only
an
incredible
Indo
warrior,
but
she's
also
an
incredible
Indo
advocate.
She
opens
up
to
us
in
a
very
vulnerable
and
real
way.
She
not
only
struggles
with
endometriosis,
but
she's
also
experienced
the
struggle
of
PCOS
and
adenomiosis.
Last
time,
Nikki
shared
her
incredible
story:
a
journey
through
pain,
loss,
and
finally
healing.
Her
honesty
gave
voice
to
what
so
many
of
us
live
with
every
single
day.
Just
to
catch
you
up,
this
is
where
we
left
off
and
where
we're
going.

SPEAKER_00
3:25

And
I
just
remember
my
first
one
was
so
painful,
and
I
was
telling
my
mom
my
stomach
hurts,
and
she
was
she
was
like,
oh,
it's
just,
you
know,
gas
or
something,
you
know.
And
the
next
day
I
started
my
period,
and
I
and
I
felt
like
none
of
my
other
friends
had
started.
But
she's
I'm
gonna
get
emotional.
She's
the
reason
that
I
advocate
so
strongly.
You
know,
I
want
her
to
have
a
different

Pregnancy, Loss, and Medical Gaslighting

SPEAKER_00
3:45

experience.
And
I
want
my
son
to
know
if
he
ever
has
a
daughter
or
a
wife,
that
they
don't
have
to
go
through
what
I
went
through.
Because
at
this
point,
I
had
had
so
many
horrible
periods,
so
many
miscarriages,
so
much
gaslighting,
so
much
just
misinformation,
and
well-meaning
doctors,
but
they're
just
not
educated.
I
wasn't
this
appointment,
it
was
about
my
endo,
you
know,
and
maybe
POS
too.
And
I
said,
What
do
you
mean?
And
he
goes,
and
that's
probably
what
caused
all
your
miscarriages.
I
just
like
my
jaw
dropped
and
I
instantly
just
started
crying.
I
wasn't
there
to
have
that
conversation.
And
my
husband
comes
back
and
he's
like,
What
just
happened?
He's
like,
What
do
you
want
you
crying?

SPEAKER_01
4:20

Please
help
me
in
welcoming
to
the
table
Nikki
Phillips.
Thank
you,
Nikki,
so
much
for
joining
me.
I
am
so
thrilled
to
have
you
on
here
today.
Absolutely.
It's
just
a
pleasure
to
be
here.
I'm
excited
to
have
this
discussion
with
you
today.
Yeah.
I
think
one
of
the
things
that
both
you
and
I
have
talked
about
is
just
because
we
wanted
these
kids
so
bad,
I
want
to
talk
a
little
bit
about
parenting.
So
this
may
be
a
little
bit
of
a
trigger
warning
for
those
who
aren't
able
to
have
kids,
or
maybe
this
isn't
of
interest
to
you,
but
I
think
it
is
important
to
talk
about.
The
trauma
that
our
kids
face
and
seeing
us
in
pain
is
so
hard.
Like
I
wanted
my
kids
so
bad.
And
our
stories
are
very
similar
in
our
pregnancies
and
post
op.
And,
you
know,
it
took
me
a
little
bit
of
time
to
get
pregnant
with
my
second
child,
and
a
lot
of
what
I
had
gone
through
before
was
just
as
like
frustrating,
right?
And
and
I
didn't
enjoy
being
pregnant.
And
so
I
always
thought
I
was
a
bad
mom
because
I
didn't
enjoy
being
pregnant
yet.
I
wanted
them
so
bad.
And
then
when
I
had
them,
I
was
in
so
much
pain.
And
it
just
recently,
you
know,
I
was
going
through
some
dental
drama
and
really
was
incapacitated,
like
out,
unable
to
do
anything.
And
my
daughters
are
like,
Mom,
it's
always
like
this.
Are
you
okay?
Are
you
ever
gonna
be
okay
again?
And
it
triggered
me
so
bad
because
it
took
me
back
to
when
I
was
in
such
severe
pain.
And
they
were
like,
Mom,
are
you
gonna
be
okay?
And
the
worry
in
their
face.
And
then
now
they
ask
me
all
the
time,
Mom,
am
I
gonna
have
endometriosis?
Mom,
am
I
gonna
be
like
this?
And
I
think
it
would
so
hard.
And
I
understand
why
there
are
some
people
who
have
endometriosis
that
are
like,
I
don't
want
to
have
kids.
I
don't
want
to
pass
this
on.
I
get
that
100%
get
that.
Because
it
is
so
hard
to
look
in
my
kids'
faces
and
be
like,
I
don't
know.
I
hope
it's
not
like
this.
But
if
it
is,
and
I
and
this
is
what
I
always
tell
them,
but
if
it
is,
I
will
advocate
for
you.
And
you
have
a
mom
that's
been
through
this.
I
know
people.
So
don't
you
like,
oh
that's
right,
mom,
you
know?
Yeah.
But
even
still,
it's
it

Kids Seeing Pain and Inheriting Fear

SPEAKER_01
6:20

doesn't
mean
that
they
won't
face
some
of
the
the
traumas
and
the
heartache
and
the
things
that
are
really
hard
to
cope
with.
It
doesn't
mean
that
they're
not
gonna
grieve
what
it
could
have
been.
And
I've
had
to
miss
out
even
since
with
other
things.
And
I
think,
man,
this
is
this
is
what
I
hope
they
don't
remember
this.
You
know,
like
I
hope
this
isn't
what
they
remember
of
their
mom
when
they
grow
up.

SPEAKER_00
6:42

Yeah.
Well,
so
I
used
to
I
used
to
be
a
teacher,
and
then
I
had
my
son,
and
then
I
had
my
daughter,
and
when
my
son
was
in
kindergarten,
I
decided
to
switch
to
homeschool.
So
I
work
part-time
now,
and
then
my
my
job
is
very
flexible.
I
can
work
remotely
a
lot,
which
is
great.
But
I
thought,
okay,
I
can
homeschool.
And
I'll
never
forget
the
first
year
I
was
doing
it.
I
could
sit
with
both
the
heating
pads
and
all
the
pain
medicine
and
not
be
like
judged
the
way
I
was
maybe
with
my
students
wondering.
I
should
want
to
hide
it
from
my
students.
And
I
do
remember
one
of
my
students
going
back
in
the
day
when
I
was
a
teacher,
this
happens
to
you
every
month.
Are
you
okay?
Like,
even
the
students
like
picked
up
on
it,
but
I
was
like,
I'll
be
fine.
But
I
remember
thinking,
okay,
I
can
get
I
can
do
this
in
homeschool,
I
can
tough
it
out.
But
it
got
to
a
point
where
there
were
days
where
I'd
have
migraines.
That
was
another
symptom
I
started
to
have
in
the
last
five
years.
Migraines
that
were
very
tied
to
my
cycle
and
would
just
take
me
out
for
an
entire
day.
And
again,
since
my
surgery,
those
have
been
better,
but
not
completely
gone,
right?
I
still
have
them,
but
they're
they
were
definitely
tied
to
whatever
was
going
on
with
my
endo
and
all
my
hormones.
And
so
I
would
have
a
migraine
and
it
would
start
to
come
and
I
would
try
to
like
push
through
and
do
school
and
take
care
of
my
daughter
and
work
and
do
things,
you
know.
And
I
remember
my
son
coming
over
and
being
like,
No,
you
have
another
headache.
I
would
tell
him,
Mom
has
a
headache,
and
he'd
say,
Oh
no.
And
he
would
get
hit,
put
the
blanket
on
me
and
tuck
me
in
and
then
get
his
iPad
and
then
just
wander.
Oh,
like
he
knew
it
was
time
to
play
on
the
iPad.
And
he,
of
course,
he
felt
sorry
for
me,
but
to
him
it
was
like,
oh,
I
get
hours
of
uninterrupted
screen
time
and
I
just
was
surviving,
you
know?
And
the
fatigue,
like
when
I
would
have
those
those
hours
of
just
pain
where
I
couldn't
get
out
of
bed,
like
and
it
I
don't
I
look
back
and
like
I
don't
even
know
how
I
did
it
or
if
it
just
got
worse
over
the
years
by
the
time
I
was
homeschooling,
like
trying
to
parent,
trying
to
just
be
there
for
my
kids.
And
same
thing.
I
didn't
and
then
after
I
had
my
surgery,
I
didn't
want
to
scare
them,
like
especially
my
daughter,
like
you
said,
I
didn't
want
to
scare
her.
Like,
and
so
I
but
I
was
still
very
open.
My
we
were
very
open
in
our
house
about
um
human
anatomy
and
just
everything.
And
so
my
son,
after
I
had
surgery,
he
wanted
to
see
my
uterus
because
I
told
him
they
took
it
out.
And
he
said,
Can
I
see
uterus?
And
I
was
like,
No,
no,
they
don't
let
me
take
it
home.
Like,
did
you
know
that
some
people
do
take
their
uteruses
and
they're
yes,
you
can
request
it.
Pathology,
can
they
get
it
back
from
pathology?

SPEAKER_01
8:52

I
mean,
I
don't
know,
but
there
are
some
people
that
save
their
their
ovaries
and
they
like
have
them
in
jars.

SPEAKER_00
8:59

And
I
was
like,
I'm
okay
not
seeing
you
ever
again,
you
ain't
uterus.
Yeah,
goodbye.
We
we
part
ways,
it's
good.
Yeah,
so
this
is
funny.
My
my

Homeschooling While Managing Symptoms

SPEAKER_00
9:10

kids
have
understood
as
they
get
older,
and
my
daughter's
still
kind
of
learning
about
it.
She's
a
little
less
intuitive
about
that
kind
of
stuff.
My
son
loves
science
and
he
loves
all
the
anatomy
stuff.
And
now
my
kids
both
say
they
want
to
be
an
excision
specialist
and
they
want
to
do
surgery.
And
I'm
like,
hey,
I'll
support
you.

SPEAKER_01
9:25

Awesome.
My
girls
want
nothing
to
do
with
it.

SPEAKER_00
9:27

Yeah.
I
don't
know.
We'll
see.
He
floats
back
and
forth
between
marine
biology
and
that,
and
I'm
like,
okay,
we'll
see.
But
they
just
saw
what
a
difference
it
made,
but
they
still
see
that
I
struggle
and
I
still
have
days.
I
still
have
days
where
I'm
tired
and
I
have
to
learn
to
respect
my
body.
But
it's
really
hard
to
be
a
parent
because,
like
you
said,
I
wanted
this
so
badly,
and
then
I
felt
like
such
a
bad
mom
when
I
couldn't
function,
especially
when
I
was
working
full-time.
I
would
come
home
and
just
crash
and
like
I
couldn't
do
anything.
I
couldn't
be
there,
I
couldn't
cook.
I
just
had
to
like
sit
on
the
couch
and
like
or
sit
on
the
floor
with
a
heating
pad
and
play
with
my
son
with
blocks,
you
know.
And
I
am
so
happy
that
I
have
such
a
wonderful
husband,
but
it
didn't
feel
like
the
dream
that
I
had
of
motherhood,
you
know,
those
early
years.
Like
I
feel
like
I'm
getting
some
of
that
back
now.
Uh,
but
it
it
did
those
early
years,
it
kind
of
took
that
out
of
me.
I
just
remember
I
thought,
well,
everyone's
tired.
Everyone's
tired
when
they
have
a
newborn,
but
it
just
got
worse
with
the
pain
and
then
and
then
worrying
if
we
were
gonna
have
another
miscarriage
in
between
the
two
kids.
I
just
it
was
all
kind
of
taken
away.
Like
I
never
I
had
my
first
pregnancy
and
I
told
my
parents
and
we
hadn't
really
told
anyone
else
yet.
And
so
then
we
had
the
miscarriage,
and
it
was
kind
of
like
we
had
to
keep
it
secret.
And
so,
of
course,
with
the
next
one,
I
was
less
secret
about
it
because
I
didn't
want
to
be
isolated
again.
But
it's
still
like
I
never
got
that
experience
of
being
able
to
just
be
like,
I'm
pregnant
and
and
just
enjoy
it.
And
then
it
was
a
miserable
pregnancy.
It's
just
that
whole
journey,
that
whole
like
people
ask
me,
you're
done.
I'm
like,
Yeah,
I'm
done
with
that
whole
I
don't
miss
that
time
in
my
life.
Like
it
felt
like
it
took
out
of
our
marriage,
like
we
were
just
so
focused
on
it.
And
then
to
just
be
dealing
with
pain
and
fatigue
and
just
like
a
constant
reminder
of
my
body
that
seems
to
hate
me.

SPEAKER_01
11:04

Right.
I
and
I
think
that's
one
thing
that
really
for
me
was
so
hard
in
pregnancy
was
the
fact
that
at
any
point
I
could
miscarry.
Yeah,
that
was
always
a
fear.
I
remember
being
like,
I
just
want
morning
sickness
so
that
that
I
know
the
baby's
okay.
Yeah.
And
boy,
did
I
get
it.
And
I
got
it
tempted
the
entire
pregnancy.
Like
I
was
so
sick,
both
pregnancies.
But
I
just
remember
thinking,
this
is
not
what
it's
supposed
to
be
like.
Yes,
I
was
excited.
Yes,
I
wanted
to
experience,
and
I
was
so
fortunate
enough
to
experience
carrying
my
child.
Like
I
I
appreciate
that.
It
wasn't
like
I
didn't,
but
it
was
like,
this
is
not
fun.
Like
this
is
painful,
it's
taking
everything
out
of
me.
And
you
know,
when
I
was
pregnant
with
my
second,
we
were
remodeling
our
kitchen.
And
so
we
had
no
kitchen.
I
had
a
three
and
a
half
year
old.
I
was
pregnant,
I
was
miserable,
and
I
was
designing
the
kitchen.
And
I
was
like,
who
thought
it
would
be
a
good
idea
for
a
pregnant
lady
to
redesign
a
kitchen
when
she
is
like
miserable?
It
was
awful.
But
I
just
remember
thinking,
this
isn't
what
I
pictured,
like
the
grief
of
that.
And
I
even
look
back
sometimes
and
think,
I
really
did
grieve
the
fact
that
I
knew

Surgery, Healing, and Self‑Grace

SPEAKER_01
12:20

that
this
wasn't
normal,
even
for
me.
And
I
also
I,
you
know,
I
had
two
c-sections.
And
so
for
me,
it
was
like
I
knew
because
my
first
one
was
a
c-section,
and
I
grieved
that
I
couldn't
have
a
natural
birth
with
her.
And
now
knowing
how
my
uterus
was
and
everything
else,
it's
a
miracle
I
have
these
kids,
yeah,
it
makes
sense
why
I
had
a
c-section.
But
then
the
second
one,
knowing
I
was
gonna
have
a
c-section,
was
like,
I
will
never
know
what
it
feels
like
to
have
a
normal
delivery.
And
there's
that
grief
on
top
of
it,
although
I
was
excited
to
have
my
kids.
Yes.
So
I
think
there
was
just
so
many
elements
to
it.
And
I
and
I
think
what's
hard
is
like
those
have
those
moments
have
shaped
kind
of
how
I
parent
now.
And
I
remember
when
I
was
in
the
height
of
my
pain
after
my
second
child,
I
had
zero
tolerance,
zero
patience
for
my
kids.
I
didn't
even
really
want
to
sit
and
play
with
them
because
I
was
in
so
much
pain
half
the
time.
And
I
didn't
want
them
to
see
me
like
that.
So
I
would
hide.
I
would
literally,
my
husband
would
get
home
from
work
and
I
would
hide
because
I
was
in
so
much
pain
and
I
didn't
want
them
to
see
the
nasty
mom.
Yes.
And
I
didn't
know
how
to
like
respond.
I
was
miserable.

SPEAKER_02
13:24

Yeah.

SPEAKER_01
13:25

And
that's
something
they
don't
talk
uh
people
don't
talk
about
that
aspect
of
it
of
like
you
want
them
so
bad
and
yet
you
feel
like
a
terrible
parent.

SPEAKER_00
13:32

Yeah.

SPEAKER_01
13:33

Like
you
don't
deserve
them.

SPEAKER_00
13:34

Yes,
and
it
totally
caused
a
lot
of
guilt.
And
I
even
had
a
moment
like
maybe
this
is
why
I
had
all
the
miscarriages,
because
I
wasn't
supposed
to
have
kids
and
I
kept
pushing
it,
but
I
know
that's
not
true
now.
But
I
yeah,
it
it
plays
mind
tricks
on
you.
And
I
just
wanted
to
be
the
mom
that
they
deserve.
So
then
when
I
did
homeschool
too,
I
was
like,
oh,
now
I
get
to
make
up
for
it.
And
it
was
my
endo
was
only
getting
worse.
It's
just
when
I
finally
had
my
surgery,
it
was
like,
yes.
And
but
since
like
my
since
my
surgery,
since
becoming
part
of
the
endo
community,
I've
learned
to
have
so
much
grace
for
myself,
to
allow
myself
time
to
heal,
to
allow
myself
good
days
and
bad
days.
Like
I
still
have
days
where
I
just
wake
up
and
I'm
like,
I
don't
feel
like
working
out
today.
All
right,
and
that's
okay,
because
I
can
choose
to
have
that
energy
to
work
out
or
to
be
a
mom
today,
and
that's
all
I
have
in
me.
That's
that's
all
I
have
in
my
tank
today,
and
that's
okay.
Where
I
used
to
before
my
my
surgery
last
year,
it
was
I
would
just
push
through
it
and
then
be
miserable,
and
then
no
one
no
one
wanted
to
be
around
me.
Right.
Yeah.
So
and
yeah.
And
then
I
also
felt
like
a
bad
wife,
like
because
my
husband's
carrying
this
burden
and
not
a
I
wasn't
carrying
our
co-parenting
burden.
Um,
you
know,
and
he's

Identity, Comparison, and Motherhood Guilt

SPEAKER_00
14:45

so
selfless,
like
so
he
would
never
complain,
almost
to
a
fault.
Right.
Same
with
my
husband.
Like
to
a
fault.
He
would
hold
something
in,
and
I
know
it
was
bothering
him,
but
it's
nothing
that
he
ever
said
or
did
to
make
me
feel
that
way,
but
it
was
just
I
just
felt
that
way.
Because
you
just
have
this
vision
in
your
mind.
And
I
I
think
the
world
and
media
and
social
media
does
that
to
us,
you
know,
makes
us
think
we
have
this
vision
in
our
mind.
So
but
it
yeah.

SPEAKER_01
15:09

Well,
I
also
think
it
makes
you
feel
like
less
of
a
woman.
Like,
and
I
don't
know
if
y
you've
experienced
this
or
anyone
out
there
has
experienced
this,
but
like
the
sense
that
your
body
continues
to
throw
curveballs
your
way
and
is
like,
hey,
foolery,
gotcha,
you
know,
like
that's
what
it
feels
like.
And
to
feel
like
less
of
a
woman
makes
you
feel
kind
of
like
this
trickle
effect
of
less
of
a
wife,
less
of
a
mom.
And
it's
not
accurate.
Yes.
And
even
though
I
have
a
diagnosis,
I
know
what's
going
on
with
me.
I
know
that
this
isn't
my
fault.
I
would
never
choose
this
for
anyone,
including
myself.
Like
I
would
never
intentionally
want
to
not
do
something
with
my
family.
The
reality
of
the
disease
is
that
it
stops
you
oftentimes
from
doing
those
things,
therefore
making
you
feel
less
than.
And
I
know
that
we
talk
about
like
you
shouldn't
feel
less
than,
but
try
to
convince
yourself
that
in
the
moment
is
like
nearly
impossible.
Right.
And
so
I
just
people
don't
understand
the
full
effect
of
this
disease,
even
if
you're
able
to
have
kids.
And
there
are
those
people
that,
you
know,
I
have
interviews
with
Pasayo
Thompson,
who
has
severe
endometriosis,
thoracic
and
otherwise,
and
yet
has
three
girls.
So
infertility
didn't
play
a
part,
right?
For
that.
And
so
I
look
back
at
all
of
these
stories
and
how
different
it
is
for
everyone.
But
the
resounding
feeling
is
the
same,
you
know,
moments
of
inadequacy,
moments
of
fear,
moments
of
frustration,
moments
of
guilt,
and
then
feeling
less
than
like
we
all
go
through
these
huge
emotions.
And
what
I
realized
is
like
those
emotions
could
be
different
tomorrow,
right?
We
have
to
hold
on
for
tomorrow's
emotions,
which
could
be
better.
Yeah.
You
know,
it's
a
day-by-day
thing.

SPEAKER_00
16:53

Yeah,
it's
it's
tough.
And
I
think
also
that
there's
a
part
of
us
that,
like
you
said,
we
have
these
expectations
and
we
have
these
images
in
our
mind
of
what
it
means
to
be
a
woman.
And
when
these
things
are
taken
away
from
us,
when
things
don't
happen
to
us
the
way
we
expect,
and
even
when
they
are
given
to
us,
I
have
friends
that
have
endo
that
have
never
been
able
to
have
kids
yet
or
never
will.
And
I
have
friends
that
have
endo
that,
like
you
said,
my
my
friend
that
told
me
about
Dr.
Duke,
the
one
that
had
stage
four
and
had
to
go
back
three
times.
She
has
three
kids,
she
had
them
back
to
back,
you
know,
and
they're
all
teenagers
now,
but
you
know,
same
thing.
And
I
think
we
we
compare
ourselves
even
within
the
endo
community,
yeah,
you
know.
Well,
she
can
do
this
and
she
can
do
that.
And
I
think
like
it
goes
back
to
what
I
said
about
that
girl
in
high
school.
Like,
well,
I
don't
have
it
that
bad,
so
I
shouldn't
feel
this
bad
because
I'm
not
that
bad.
And
we
play

Teaching Kids to Self‑Advocate

SPEAKER_00
17:40

those
mind
tricks
on
ourselves
about
just
comparing
ourselves
to
people
who
don't
have
endo
and
then
two
people
who
do,
and
it's
so
individualized.
Like
what
you
can
do,
what
affects
you,
what
triggers
you,
whether
it's
food
or
activities
or
whatever
environment
or
just
how
your
own
body
is,
it's
gonna
be
different
than
mine,
you
know.
And
we
we
can't
compare
ourselves
to
other
people,
even
within
the
community.
And
that's
hard.
And
I
lead
a
support
group
now,
and
that
was
some
a
discussion
we
had
just
with
the
last
one
about
we
all
are
on
different
pages.
We
all
have
endo,
but
we
all
have
it
differently.
And
it's
such
an
individualized
disease.
I
wish
more
doctors
understood
that.

SPEAKER_01
18:13

So
you're
right.
If
you
find
a
doctor
who
puts
you
in
the
same
category
as
every
other
patient
they
see,
it's
probably
not
going
to
be
the
best
doctor
for
you
because
you
are
so
individualized
in
your
disease
and
how
it
affects
you
and
your
life
and
your
body.
And
and
that's
why
I
always,
you
know,
I
I
tell
people
about
a
lot,
is
they
told
me
just,
you
know,
similar
to
what
you
said,
was
well,
it
you
can't
get
pregnant
because
of
X,
Y,
and
Z,
or
you
can
be
so
you
can't
have
endo
because
of
X,
Y,
and
Z,
right?
Well,
that
doesn't
necessarily
ring
true
because
you're
so
individualized.
Like
it's
going
to
affect
your
body
differently.
I
mean,
if
you
think
about
endometriosis
and
the
way
that
it
is
the
way
that
the
lesions
appear
on
everyone,
it
is
in
different
locations
for
everyone.
Yeah.
In
different
various
forms.

SPEAKER_00
19:01

I've
never
met
that
had
the
exact
same
met
anyone
that
had
the
same
locations
as
me.
Not
one.
And
I've
talked
to
hundreds
of
women
with
endo
now,
and
not
one
of
them
has
had
the
exact
same
locations
as
me.

SPEAKER_01
19:10

So
no,
there's
no
roadmap
for
it,
right?
And
so
I
think
as
a
community,
that's
something
I
feel
like
we
could
be
better
at.
It's
not
comparing
ourselves
to
others.
Our
story
is
still
significant,
it's
still
valid.
What
we've
walked
through
is
still
traumatizing
a
lot
of
times.
You're
still
important,
your
story's
important.
The
way
that
your
feelings
and
your
emotions,
those
are
all
valid
and
important.
And
no
one
deserves
better
care
just
because
their
story
is
worse.
Like
everyone
deserves
quality
care,
quality
providers.
That's
just
the
reality
of
the
disease,
is
like
we
can't,
we
can't
do
that.
It's
it
kills
our
it
steals
our
joy,
right?
Yeah.
Comparison
steals
joy.

SPEAKER_00
19:56

And
I
think
that's
true
of
a
lot
of
chronic
illnesses,
right?
But
it's
particularly
with
endo
because
it
is
so
individualized.
But
that
was
another
thing
as
a
parent,
too.
I
wanted
to
model
for
my
kids
that
you
can
talk
to
doctors,
you
can
empower
yourself.
Like
you
don't
you
can
come
with
education
information
and
you
can
continue
to
go
to
doctors
until
you
find
the
one
that
will
listen
to
you
and
get
you
the
care
that
you
need.
And
I
just
wanted
my
kids
to
know
that.
But
also,
if
they
did
ever
become
doctors,
that
they
would
listen,
that
they
would
care
and
be
open
to
the
individualized
patient
and
see
each
patient
differently.
I
know
that,
you
know,
that
that
show
house
or
whatever,
you
know,
like
Dr.
House
or
whatever.
That
yeah,
it
was
years
ago.
But
it
it
we're
not
all
that
crazy
case,
you
know,
but
it
sort
of
feels
like
that
because
we're
all
so
different.
And
so
I
just
wish
that
doctors
would
almost
think
that
way
in
a
little
bit.
But
it's
he's
also
solving
cases
that
are
just
the
rare
case.
We're
common.
Like
this
is
not
a
rare
disease.
Like
you're
thinking
outside
the
box
when
really
you
need
to
be
thinking
inside
the
box.
And
so
I
don't
know,
that's
just
my
my
two
sensitive
doctors
that
I
could
talk
about
that.

SPEAKER_01
20:55

Well,
I
mean,
you
you
have
a
lot
of
experience
with
that,
so
that's
probably
the
reason
why.
But
also,
I
think
what's
you
know,
we
talk
about
having
kids
and
we
talk
about
our
journeys,

From Patient to Advocate

SPEAKER_01
21:05

but
this
ultimately
led
you
into
a
space
of
advocacy.
What
are
you
doing
because
of
your
journey?
Because
this
it
propels
us
a
lot
of
times.
You
know,
our
what
we've
walked
through
has
shaped
what
we
want
to
change.
And
I
know
that
you've
been
working
a
lot
on
that.
What
are
the
things
that
you're
doing
for
your
advocacy?

SPEAKER_00
21:25

Yeah.
So
I
uh
after
my
my
surgery,
my
my
two-week
post-op,
I
met
with
Dr.
Duke
again,
and
he
was
kind
of
went
over
my
surgery
and
my
results,
and
I
was
just
blown
away
by
the
information,
but
I
was
angry.
I
was
motivated.
I
was
like,
this
is
not
okay.
And
I
went
from
two
weeks
before,
you
know,
just
the
day
before
my
surgery,
thinking,
what
if
I
don't
even
have
it?
to
okay,
I'm
doing
something
about
this.

SPEAKER_02
21:46

Right.

SPEAKER_00
21:47

I
don't
I
mostly
did
it
for
my
daughter.
I
just
looked
at
my
husband
and
and
my
son
too,
because
like
I
said,
you
know,
yes,
this
mostly
affects
women
or
whatever,
but
this
cannot
be
her
life.
Like
I
she
might,
she's
likely
to
have
it,
like
there's
no
getting
around,
she
might
not,
but
the
world
can
be
different
for
her
and
and
research
can
catch
up.
And
so
I
on
that
drive
home
from
the
um,
because
we
live
about
two
hours
from
Dr.
Duke's
office.
Um,
and
so
on
that
drive
home,
I
was
talking
with
my
husband
who
works
at
the
medical
school
at
the
University
of
Idaho,
and
I
said,
What
do
they
teach
on
endometriosis?
Now
he
teaches,
he
kind
of
oversees
the
mind,
brain,
and
behavior
blocks
of
the
neuroscience
side
of
it.
So
he
doesn't
oversee
that
class,
but
he
was
able
to
have
access
to
the
slides
and
the
information.
And
so
we
got
home
and
he
went,
looked
it
up,
and
pulled
it
up,
and
it
was
just
one
sentence,
just
one
sentence
or
about
endo
and
one
sentence
about
how
to
treat
it.
And
it
was
the,
in
my
opinion,
and
again,
I'm
not
a
doctor,
the
inaccurate
definition
of
what
causes
it.
Um,
you
know,
it
was
that
old
retrograde
menstruation
theory.
So
I'm
sure
people
who
listen
to
this
podcast
know
about
that.
And
so
it
was
first
of
all,
it
was
inaccurate,
and
then
it
was,
and
the
treatment
is
hormonal
birth
control
or
other,
you
know,
or
listen
that
kind
of
stuff
too.
Right.
So
I
I
was
like,
and
after
I
just
knew
in
the
two
weeks
that
I
had
my
surgery,
I'd
been
listening,
I
think,
to
your
podcast
and
other
ones,
and
just
reading
everything
I
could
on
endo
because
I
knew
that
I
came
out
of
the
surgery
having
it.
I
just
didn't
know
much
about
it.
But
after
I
came
home
with
more
information
about
my
results,
and
after
listening
to
this
for
two
weeks,
I
was
and
this,
like
all
I
did
because
I'm
sitting
in
bed,
right?
It's
a
great
podcast,
reading
so
many
articles,
asking
so
many
questions,
and
I
was
just
taking

Educating Medical Students

SPEAKER_00
23:25

notes
and
I
was
just
motivated.
I
was
like,
this
is
unacceptable.
I
was
like,
I
would
like
to
come
talk
to
them
and
correct
them.
I
love
that.
Like,
I'm
not
a
doctor,
but
I'm
gonna
do
this.
Like,
this
is
unacceptable.
And
um,
and
maybe
I
could
get
Dr.
Duke
or
other
specialists,
and
so
and
I
think
I
I
just
kept
listening
to
podcasts,
just
kept
researching,
just
kept
reading
articles,
getting
any
hands
on
any
information
I
could.
And
I
found
Nancy's
Nook.
So
many
of
you
know
about
that.
Um,
and
I
think
with
your
podcast,
I
had
a
question
about
reaching
out
to
your
congressmen
and
people
they're
legislating
for
changing,
you
know,
rules
on
how
research
is
done
and
just
advocating
for
research
and
diagnosing
and
kind
of
overseeing
all
that.
So
I
think
that's
how
our
conversation
started,
but
really
it
turned
into
this
whole
thing
because
I
was
like,
oh,
I'm
just
gonna
write
to
Congress
people,
I'm
gonna
figure
out
how
to
get
involved
on
the
legislative
side,
which
quickly
turned
into
no,
I
just
wanted
I
want
to
talk
to
doctors.
Like
that
was
kind
of
where
my
heart
fell.
And
so
just
after
talking
to
you
and
we
had
many
conversations,
I
reached
out.
And
one
of
the
things
I
did
get
to
do
in
November
last
year,
I
went
to
that
medical
school
and
sat
down
and
told
my
story
to
the
medical
students
who
were
just
about
to
go
into
the
residency
programs.
And
I
just
wanted
them
to
know
that
I'm
not
your
typical
case.
I
mean,
no
one
really
is.
I
don't
know.
Like,
there's
yeah,
is
there
really
a
textbook
case
of
endo?

SPEAKER_01
24:36

I
I
don't
know.
Like,
I
mean,
there's
definitely
consistent
cases
of
like
if
you
have
bad
period
pain,
that's
the
number
one
indicator.
Like
you
should
and
my
and
this
is
what
I
always
tell
people
like
assume
it's
endometriosis
until
told
otherwise.

SPEAKER_00
24:50

Yeah.

unknown
24:51

Yeah.

SPEAKER_00
24:51

But
I
will
tell
you,
I
was
so
hopeful
coming
out
of
that
because
in
my
telling
them,
they
would
raise
their
hand,
I
would
tell
them
my
symptoms
first,
and
they
would
kind
of
raise
their
hand
and
I
told
them
that
I
had
heavy
bleeding
and
other
things,
and
one
of
them
raised
their
hands
and
said,
Do
you
have
adenomyiosis?
And
I
was
like,
ding,
ding,
ding.
I
was
like,
Yes,
like
somebody
is
paying
attention,
you
know,
and
they're
getting
they're
starting
to
get
the
correct
information.
So
the
reason
that
they
had
that
information
on
the
slide
was
because
of
course
doctors
have
to
take
board
exams,
right?
They
have
to,
they
have
to
answer
it
based
on
the
research.
Research
is
10
years
behind,
you
know,
it's
not,
there's
not
a
lot
of
research.
If
you
look
at
the
information
they're
getting
now,
it's
10
to
15
years
behind.
If
you
look
at
endo
10
to
15
years
ago,
they
still
didn't
know.
So
I
was
just
able
to
talk
to
them
and
explain
to
them
that
every
individual
case
is
different.
And
if
I
remember
saying
at
one
point
during
the
discussion,
I
said,
if
you
have
a
girl
who
comes
into
your
office
and
she's
a
teenager
and
she's
having
some
really
severe
gastrointestinal
issues

Outdated Research and Individualized Care

SPEAKER_00
25:45

and
you're
thinking
IBS,
it's
probably
not
IBS,
it's
probably
endo.
Look
into
that
first.
What
I
didn't
know
was
there
was
an
actual
GI
doctor
in
the
back
sitting
there
watching
me
give
this
talk.
And
I
and
he
was
there
for
the
next
session
that
the
students
were
gonna
do.
And
I
was
like,
well,
maybe
he
learned
something
that
day.
I
don't
know,
you
know,
but
I
just
I
think
there
is
a
movement
in
the
right
direction.
And
I
think
it's
because
of
people
like
us
patients
that
are
reaching
out
and
educating
doctors.
I
I
wanted
them
to
know
before
they
went
into
residency
that
they're
gonna
see
some
of
these
symptoms,
they're
gonna
see
these
things
and
not
to
just
assume
sort
of
like
the
Dr.
House
thing
that
it's
some
crazy
out
there.
It's
probably
endo.
It
might
be
a
rare
form
of
endo,
it
might
be
thoracic
endo.
But
anyways,
I
just
wanted
them
to
know
that.
And
so
that
was
one
thing
I
did
was
reach
out
to
the
medical
school.
And
I
plan
to
do
that
every
year.
I
would
love
for
you
know
a
doctor
to
come
join
me,
and
that's
the
hope
as
well.
But
just
the
fact
that
they
were
willing
to
have
me
come
in
and
listen
to
my
story,
and
they
were
so
grateful
and
they
learned
a
lot
because
they
can
only
learn
so
much.
And
some
of
them
just
looked
at
me
when
I
was
telling
my
story,
like
their
eyes
got
big,
and
they
just
they
couldn't
believe
some
of
the
stuff.
And
to
me,
this
is
just
my
story.
Like,
I
don't
even
think
it's
that
bad.
Like
I've
heard
worse.
And
I
told
them
that.
I
was
like,
this
is
just
kind
of
an
average
story,
but
they
were
just
floored
with
how
much
I
had
endured
um
and
put
up
with,
and
they
had
empathy.
And
I
was
like,
okay,
you
guys
are
the
next
generation
of
doctors.
And
it's
not
that
the
previous
generation
didn't
care,
they
were
just
ill-informed,
lack
of
information,
misinformed.
And
so
if
we
can
keep
moving
in
that
direction.
So
that's
one
thing.
Another
thing
I
did
was
I
wrote
a
letter
to
my
previous
surgeon,
my
previous
OBGYN,
the
one
that
did
my
first
surgery,
I've
not
heard
back.
I'm
because
we
live
in
a
smaller
town
and
there's
a
kind
of
a
main
OBGYN
office
that,
and
there's
two
towns
here
that
they
kind
of
oversee
all
patients
that
would
probably
present
with
these
things,
and
they
would
send
them
to
these
doctors
at
this
OBGYN
office.
And
so
it,
yeah,
I
haven't
heard
back.
I'm
hoping
to
reach
out
again,
maybe
just
say,
hey,
if
you
have
any
questions,
I'm
here.
And
I
I
don't
want
to
do
it,
I
didn't
do
a
letter
that
was
like,
you
were
wrong.
I
wanted
to
say,
hey,
I've
learned
some
things.
I
would
love
to
sit
down
and
talk
with
you.
And
here's
a
great
doctor
you
can
refer
patients
to
if
they're
having
some
of
these
symptoms.
Because
OBGYNs
are
great
at
what
they
do,
right?
They
are
great
at
delivering
babies,
right?
Um,
but

Pushing GI and Primary Care to Consider Endo

SPEAKER_00
28:05

endo
is
a
different
beast.
So
and
so
I
just
wanted
her
to
know
that.
And
I
I
tried
to
do
it
the
most
like
respectful
way
that
just
said,
Hey,
I've
learned
so
much
and
I
want
you
to
come
on
this
journey
with
me,
and
I
want
to
help
other
women,
but
I
haven't
heard
back.
And
so
I
don't
know,
you
know,
that's
one
of
my
concerns.
I
don't
know
if
there's
just
a
lot,
if
there's
still
some
pushback,
doctors
don't
want
to
change,
and
I
don't
know
why
they
wouldn't.
Um,
but
the
new
generation
seems
to
be
hopeful
and
open.
And
so
another
thing
I've
done
is
I've
started
or
helped
start
a
nonprofit
group
called
Endofriend,
and
we
do
support
groups
and
care
packages
for
people
dealing
with
endo.
Um,
I've
also
connected
with
Wendy
Bingham
um
at
Extra
Pelvic
Not
Rare.
Love
Wendy.
Yes,
she's
the
best.
I
love
her.
I'm
hoping
to
partner
with
her
and
Washington
State
University.
I
reached
out
to
someone
I
found
out
there
that
she
oversees
all
the
sororities
on
campus.

SPEAKER_02
28:52

Yes.

SPEAKER_00
28:52

Yeah.
Target
audience,
right?
And
so
we're
gonna
do
an
endo
walk
and
just
put
up
informational
things
that
from
extra
pelvic
not
rare
and
put
up
information
so
that
this
target
audience,
like
if
I
would
have
known
this
information
in
college,
it
would
have
oh
my
gosh,
my
whole
student
teaching
experience
would
have
been
different.
My
first
couple
years
of
teaching,
I
wouldn't
have
hopefully.
I
mean,
we
don't
know.
I
still
maybe
have
had
miscarriages,
but
I
would
have
gone
through
it
different
set
of
eyes.
I
would
have
understood
and
not
been
so
grasping
at
straws.
And
so
I
just
want
that
for
the
next
generation.
I
of
course
I
want
it
for
my
daughter,
but
I
am
so
passionate
about
it
now
that
I
just
want
people
to
be
like,
endo
is
a
household
word
now.
It's
not
some
crazy
thing
that
the
one
girl
on
your
high
school
color
guard
team
had
and
nobody
else
has
it.
Looking
back,
about
three
or
four
of
us
on
the
color
guard
team
had
it
because
there
was
about
30
of
us.
Right.
So
and
I
was
one
of
them.
I
didn't
know.

SPEAKER_01
29:43

You're
one
of
them.
You
drew
the
short
stick.
Yes.

SPEAKER_00
29:46

So
and
maybe
more.
I
always
say
it's
probably
more.
We
just
don't
know
because
those
are
the
ones
the
one
in
10
statistic
is
who's
diagnosed.
So
so
yeah,
so
I'm
working
on
those
projects
too
and
just
connecting.
I
have
a
heart
for
advocacy,
I
have
a
heart
for
educating.

Writing Doctors and Seeking Change

SPEAKER_00
30:00

Not
just
doctors,
but
potential
patients
too,
that
they
could
um
understand
that
this
is
not
normal
when
you're
it's
not
normal
to
have
that
much
pain.
It's
not
I
do
have
friends.
I
would
have
friends
that
just
said,
Oh,
I
don't
even
take
Tylenol
and
I
have
my
period.

SPEAKER_01
30:14

Like,
what's
not
like
what
is
a
normal
period?
I
don't
know
what
that's
like.
I've
never
had
a
normal
period
my
whole
in
my
entire
life.
I
never
had
a
normal
period.
And
so
someone's
like,
What
is
a
normal
period?
I'm
like,
I
don't
know,
I've
never
felt
one.
I
I
couldn't
tell
you.
I
know
what
it
should
look
like,
but
I
don't
I've
never
experienced
it.

SPEAKER_00
30:31

And
I
do
have
a
friend
too
that
she
told
me
she
got
diagnosed
with
endolaster
because
I've
talked
to
her
about
it
and
she
went
and
had
surgery
and
found
out
she
had
endo,
but
she
goes,
Well,
I
I
I've
always
had
painful
periods,
but
my
sister
never
did.
And
I
just
thought
that
was
just
my
lot
in
life.
But
she
didn't
have
any
of
the
other
symptoms
except
for
sort
of
infertility.
That
was
it.
She
just
had
pain,
she
didn't
have
any
head
and
bleeding,
like
nothing.
Just
just
you
know,
painful
periods
that
she
would
take.
And
and
she
ended
up
having
stage
three
endo,
you
know,
and
she's
struggling
with
some
infertility.
So
it's
just
yeah,
it's
it
it
looks
so
different
in
everyone,
and
that's
what
I
want
women
to
know.
And
I
would
I
love
the
stuff
that
extra
pelvic
not
rare
has
because
it
teaches
you
that
it's
more
than
just
a
reproductive
thing.
And
and
that's
what
I
want
to
do.
So
I
just
and
and
there
I
think
there
are
other
things,
but
that's
kind
of
my
big
projects
in
focus
right
now.
So
on
top
of
homeschooling
and
working
part-time,
yeah.
Someone
asked
me,
is
this
your
third
job?
And
I
said,
Yeah,
I
just
do
it.

unknown
31:26

Yeah.

SPEAKER_01
31:28

I
think
what's
interesting,
like
I
look
back
and
I'm
like,
endometriosis
has
become
it
it
became
such
an
identity
to
me
because
all
I
knew
was
pain,
all
I
knew
was
like
what
it
was
doing
to
my
body
for
the
longest
time.

Building Community: Endofriend and Campus Outreach

SPEAKER_01
31:40

That
now
my
passion,
that
identity
turned
into
my
passion
because
I
don't
want
someone
to
have
to
go
through
that
being
their
identity
for
so
long
and
being
the
and
not
having
their
life
centered
around
this
disease,
whether
you
were
gonna
start
your
period
or
whether
you
know
you
were
gonna
bleed
through
pads
and
tampons.
I
was
talking
to
my
husband
the
other
night
about
this,
about
how
much
I
was
bleeding
and
for
how
long
we
were
just
thinking
about
it.
We're
like,
I
the
we
were
lucky
if
I
was
off
my
period
for
two
days
a
month
towards
the
end,
you
know?
And
so
I
think
it
became
such
a
big
part
of
our
everyday
lives
that
now
that
I'm
not
experiencing
that,
yeah,
it
turned
into
my
passion
to
prevent
others
from
experiencing
that.
And
so
I
think
that's
probably
why
for
us
it's
become
such
a
huge
passion.
But
one
of
the
things
that
you
had
talked
about
is
how
we
ended
up
talking,
yeah,
was
the
legislative
piece
of
this
too,
and
that
is
important.
And
if
that
that
drives
you,
Dana
Bowling
did
an
episode
with
me,
and
that's
episode
71.
Pretty
sure
that's
about
that.
Yep.
Dana
Bowling
has
an
amazing
insight
on
this,
and
she
continues
to
fight
in
New
Jersey.
And
so
if
you
are
interested
in
learning
more
about
that,
go
back
and
listen
to
episode
71.
There's
a
role
for
everyone
to
play
in
advocacy
in
the
sense
that
like
you
don't
have
to
give
everything
to
it.
But
uh
if
you
want
to
make
an
impact
even
in
the
little
ways,
you
can
do
that.
But
this
community
is
one
that
is
unmatched.
Like
you
meet
people
that
you
never
thought
you
would,
and
then
on
top
of
that,
you
meet
people
that
you
have
such
a
deep
connection
with,
and
you
don't
even
have
to
say
a
lot.
It's
interesting,
like
you
don't
have
to
know
each
other
prior
to
talking,
and
yet
you
will
almost
instantly
connect
because
there
is
that
deep-seated
experience
that
has
shaped
and
molded
the
way
that
you
live
your
life.
And
so
I
I
mean
that's
kind
of
what
happened
with
us.
And
I'm
so
thankful
that
we
did
cross
paths
and
that
you
did
reach
out
to
me.
And
I
always
encourage
people,
you
know,
reach
out
if
you
have
questions.
I
talked,
I
talked
to
people,
I
talked
to
the
experts.
I
want
to
ask
them
your
questions
because
you
matter,
your
voice
matters.
And
so
that's
why
I'm
so
thankful
that
you
did
reach
out
and
that
we
can
become
good
friends.

SPEAKER_00
34:01

And
for
anyone
who's
listening,
Alana
does
get
back
to
you.
She
really
does.
Like
I
was
shocked.

Making Endo a Household Word

SPEAKER_00
34:05

I
remember
like
I
had
texted
you
or
something,
or
emailed
you
on
the
it
was
the
address
that
was
attached
to
the
podcast.
And
and
then
like
the
next
day
you
got
back
to
me,
maybe
even
the
same
day,
and
I
would
looked
at
my
husband
and
I
said,
She
got
back
to
me?
Like
I
just
never
in
a
million
years,
you
know,
thought,
and
that
was
kind
of
the
beginning
of
it
all.
I
was
like,
okay,
so
this
is
a
community
I
can
join.
And
another
thing
was
the
reason
why
I
did
the
endofrine
um
one
that
we
just
started
last
year
was
because
when
I
had
my
surgery,
um,
or
actually
when
I
went
to
the
initial
appointment
to
sign
up
for
surgery,
they
sent
me
home
with
my
folder
with
all
the
information
in
it.
And
in
there
was
a
handwritten
note
and
a
little
bracelet
from
an
a
girl
named
or
a
woman
named
Alicia,
and
I'll
talk
about
her.
She's
she's
actually
the
founder
of
Endofriend.
She's
kind
of
the
brains
behind
it,
and
she's
great.
But
she
wrote
this
handwritten
note
to
me,
and
we
stopped
at
Starbucks.
I
remember
on
the
way
we
left
the
appointment,
we
stopped
at
Starbucks
before
we
hit
the
road
to
get
home
because
like
I
said,
we
live
two
hours
away.
Such
a
Washington
thing
to
do
is
stop
at
Starbucks.
Oh,
yeah.
I
mean,
or
local,
if
you
know
the
local
coffee
shops,
yes,
there's
lots
of
local
ones
too.
But
if
you
don't,
you
go
to
Starbucks.
So
yeah,
so
we
my
husband
goes
up
the
to
order
our
drinks,
and
I
just
sit
down
in
a
chair
for
a
second
and
I
open
up
the
card
and
I
just
read
the
first
part
of
it,
and
I
just
start
bawling
like
right
there
in
Starbucks.
And
my
husband
comes
back
and
he's
like,
What
just
happened?
He's
like,
What
do
you
want
you
crying?
And
I
hold
I
just
look
at
him
and
I'm
holding
this
bracelet
in
Starbucks
and
he's
like,
What
is
happening?
Like,
and
I
but
it
was
like
there
is
a
community
that
someone
cares
about
endo.
I
can
I
can
talk
about
this
with
other
people
because
when
people
find
out
about
breast
cancer,
right?
People
know
what
to
do.
They
they
step
in,
they
make
meals,
they
help
you
with
chores,
they
do
all
these
things
and
you
go
through
treatment.
And
technically,
when
you
have
cancer,
you
pretty
much
have
it
the
rest
of
your
life.
I
I
understand
that.
But
endo
is
you
really
do
have
it
the
rest
of
your
life.
Like
even
if
you
get
treatment
and
have
surgery,
you're
still
dealing
with
either
comorbidities
or
um
pelvic
pain
or
whatever,
like
the
anemia.
I'm
still
fighting
some
of
that,
like
trying
to
get
that
back
on
track
because
I'm
anemic
and
um
no
longer
a
totally
anemic,
just
borderline
now,
you
know.
Just
all
those
things.
I
someone
wrote
me
a
card,
like
they
didn't
even
know
who
I
was.
I
can
talk
to
someone
about
this.
I'm
not
alone.
Like
this
is
a
local
person
that
has
this
and
cares
about
me.
And
so
I
reached
out
to
her,
and
that
just
started
another
friendship.
And
and
that's
what
started.
Like
between

Many Paths to Advocacy

SPEAKER_00
36:30

your
podcast
and
her
cards,
it
was
like
there's
a
community
for
this,
and
and
it's
like
you
said,
it's
unmatched.
And
and
it's
growing
because
if
you
just
talk
to
people,
people
that
like
um
I'm
actually
doing
a
Zoom
bathon
to
raise
funds
for
endo
friend,
but
also
just
to
raise
awareness.
And
the
lady
that
teaches
my
Zumba
class,
I
just
approached
her
one
day
because
she
knew
that
I
had
taken
a
break
from
class
because
of
my
hysterectomy,
and
I
came
back
to
her
and
said,
Look,
I
have
endo,
and
I
would
love
to
do
like
a
Zoom
bathon
and
raise
money
and
worse.
And
she
says,
Yes,
how
can
we
help
you?
And
she
reached
out
to
the
Parks
and
Rec
department
and
they
gave
us
the
gym
for
free,
and
they're
just
gonna
let
us
use
it.
Like
these
people
don't
have
endo,
but
because
people
are
talking
about
it
more,
you
know,
it
it
is
it
is,
in
my
opinion,
just
as
common
as
breast
cancer,
but
and
almost
more
so
because
breast
cancer
is
one
in
eight
in
the
lifetime
you
might
be
diagnosed
with
breast
cancer,
but
endo
is
one
in
ten
women
are
already
diagnosed.
Right.
Like
now
is
it
that's
a
different
when
you
think
about
it
statistically
different
like
and
so
and
you
deal
with
it
the
rest
of
your
life,
and
so
it's
just
so
much
more
impactful,
and
it
probably
is
higher
than
one
in
ten,
but
that's
just
the
numbers
we
have
now,
you
know.
Right.
But
yeah,
and
so
I
just
so
I
I
did
I'm
doing
the
Zoom
bathon,
so
yeah,
I
kind
of
forget
all
the
things
I'm
doing,
but
and
like
you
said,
there's
a
place
for
everyone.
You
could
organize
a
Zoom
Zoom
bathon,
you
could
write
cards,
and
that's
what
I
the
girls
in
our
support
group
that
come,
I
say
you
don't
have
to
do
all
the
things
I'm
doing,
you
just
want
to
write
a
card,
right?
Just
talk
to
people,
just
wear,
just
wear
a
shirt
that
says
endo
on
it,
you
know,
and
people
will
ask
questions,
and
that
is
enough,
you
know,
like
that's
all
we
need.
And
so
you
don't
have
to
do
all
the
things.
Luckily,
I
do
feel
like
I
am
privileged
and
blessed
to
work
part-time
and
to
homeschool
my
kids.
And
though
my
kids
were,
well,
especially
my
son
was
difficult,
maybe
they're
easier
to
manage
now.
And
I
have
time
in
my
life
and
flexibility
to
do
all
these
things.
And
I
feel
like
because
I
do
have
time
and
I
am
healthy
enough
now
to
do
them.
If
you'd
asked
me
this

The Power of Support and Belonging

SPEAKER_00
38:20

a
year
or
two
ago,
I
would
not
have
been
healthy
enough
to
do
any
of
this,
but
I
I
can,
and
so
I
do.

SPEAKER_01
38:25

And
so
and
it's
important
to
have
those
people
surrounding
you
because
I
mean
there's
you
can't
convince
someone
or
talk
to
someone
who
has
not
experienced
this
to
understand
you
the
way
that
someone
that's
walked
through
it
can
understand
you.
And
so
that's
something
that
I
have
taken
away.
I
have
lifelong
friends
now
because
of
my
angry
uterus
and
my
angry
pelvis,
you
know.
Like
I
have
lifelong
friends,
and
I
and
I'm
so
appreciative
of
that.
If
I
have
to
go
through
something
like
this,
I
would
rather
do
it
with
some
amazing
people.
And
that's
why
I'm
so
thankful
that
you
and
I
connected
and
I
get
to
do
this
with
you,
and
we
get
to
do
our
advocacy
together
and
continue
to
feed
off
of
that.
And
so,
Nikki,
thank
you
so
much
for
taking
the
time
to
just
tell
us
your
story
and
to
lend
yourself
to
this
community
in
a
way
that
I
know
will
be
impactful
to
so
many
people.
You
are
making
a
difference,
and
you
sitting
down
with
me
and
just
pouring
your
heart
out
in
vulnerability
is
changing
the
narrative
of
endometriosis
and
periods
and
PCOS
because
we're
talking
about
it.
And
that's
huge.
So
thank
you
so
much
for
taking
the
time
and
for
doing
what
you're
doing.
We
need
we
need
more
Nikki's.

SPEAKER_00
39:39

Well,
like
I
said,
there's
the
thank
you
for
having
me.
I
I
always
tell
people
there's
a
couple
things
I'm
passionate
about.
One
is
homeschooling,
but
also
now
endo.
And
so
I
I
will
talk
about
endo.
I
feel
like
when
somebody
says
endo,
I
and
they
ask
me
about
it,
I
say,
I
thought
you'd
never
ask.
And
and
I
get
people
that
send
me
their
their
friends,
their
friend's
daughter's
phone
number
because
I've
just
post
stuff
on
social
media
and
I
just
talk
about,
but
that's
that's
how
things
are
changing,
and
that
that's
how
things
will
change.
And
so
I'm
happy
to
talk
about
it
anytime.
And
think
thank
you
for
our
friendship
and
for
getting
back
to
me
that
first
time
I
emailed
you
and
giving
me
next
steps,
like
giving
me
a
place
to
join
the
community.
You
know,
that
was
that
was
really
impactful
at
a
time.
It
was
so
healing
for
me,

Closing Reflections and Gratitude

SPEAKER_00
40:20

undue
28
years
of
you
know,
trauma.

SPEAKER_01
40:22

I'm
so
glad
that
I
that
this
platform
has
allowed
me
to
do
so.
I'm
not
always
on
the
ball
quite
like
that,
but
I
do
try
really
hard
to
get
back
to
people.
But
thank
you
again
so
much.
And
I'm
looking
forward
to
what
the
future
has
for
us
as
we
continue
to
advocate
and
we
continue
to
explore
different
ways
to
help
other
people
walking
through
this
journey.
And
I'm
just
very
appreciative
of
this
community
as
a
whole.
And
until
next
time,
everybody,
continue
advocating
for
you
and
for
others.