Endo Year Reflections: Ep #4 When Pain Meets Community, Misinformation Loses

Year-End Reflection Series Kickoff

SPEAKER_02
0:00

With
the
Indo
Year
coming
up,
it's
a
perfect
time
to
reflect
on
all
the
lessons,
growth,
and
amazing
guests
we've
had
on
Indobattery.
But
instead
of
one
big
recap,
I'm
breaking
it
into
quick,
bite-sized
reflections
multiple
times
a
week.
Let's
revisit
what
inspired
us,
learn
what
we
missed,
and
recharge
together
in
our
Endo
Year
Reflection
series.
Join
me
each
episode
as
we
look
back.
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.

Why Mythbusting Matters

SPEAKER_02
1:06

There
are
some
episodes
that
feel
important,
and
then
there
are
those
episodes
that
feel
necessary.
One
of
those
is
what
I
lovingly
call
Mythbusting
101.
An
episode
that
honestly,
if
I
could
rewrite
podcast
history,
might
have
been
the
very
first
episode
of
Indobattery.
Because
it
moves
fast,
it's
direct,
and
it
tackles
the
myths
so
many
of
us
have
been
told,
sometimes
casually,
sometimes
repeatedly,
and
sometimes
by
people
in
positions
of
authority.
Things
like,
this
is
normal,
just
get
pregnant,
we
didn't
see
anything,
it'll
get
better
on
its
own.
With
the
guidance
of
board
certified
patient
advocates,
I
wanted
to
clearly
lay
out
why
so
many
of
these
statements
are
wrong
and
what
the
actual
facts
are.
This
episode
exists
as
a
resource,
something
you
can
share
with
someone
who's
early
in
their
journey
or
someone
who's
been
told
these
things
for
far
too
long.
And
this
episode

Harmful Endo Myths Called Out

SPEAKER_02
2:05

exists
because
of
stories
like
Vasaio
Thompson's.
She
saw
countless
doctors,
she
had
a
hospital
bed
that
was
essentially
all
hers,
and
yet
she
was
still
dismissed,
still
not
believed,
still
not
helped.

SPEAKER_00
2:32

Like
clockwork
that
it
was
two
weeks
before
my
period,
and
during
my
period,
I'd
always
faint
and
I
had
to
be
taken
to
a
hospital.
And
it
progressed
so
much,
it
was
like
every
two
to
three
days
I
was
in
the
hospital.
It
was
clockwork.
All
the
teachers'
name.
The
teachers
will
say,
Fisayo,
wait,
let
me
finish
teaching
before
you
faint.
And
I'd
clean
the
building
down.
Everyone
knew
Fisayo
had
to
come
again,
you
know,
and
say,
Come
on,
it's
just
periods,
manage.
No,
I
can't
manage.
My
back
is
killing
me.
And
in
I
think
in
my
culture,
they
say
only
pregnant
women
and
elderly
people
have
backaches.
So
why
are
you
having
backaches?
But
I
didn't
want
to
say
it's
not
just
the
backache,
it's
my
stomach,
it's
my
pelvic,
you
know,
I've
got
pelvic
pain
as
well.
Until
my
family
doctor
said,
I
realize
you're
always
here
on
your
period.
And
two
weeks
before
your
period,
I
said
yes.
He
said,
Do
you
have

Fisayo’s Journey From Dismissal

SPEAKER_00
3:25

tummy
aches?
I
said,
Yes,
I
have
really
bad
pain,
especially
during
my
period.
And
he
just
said,
and
that
was
the
end
of
that
conversation.
And
he
didn't
say
anything.
You
know,
he
checked,
check
here,
check
there,
you
know,
physical
exam,
and
that'd
be
the
end
of
it.
I
had
a
permanent
bed
in
the
hospital.
There
was
a
bed
that
wasn't
given
to
any
other
patients
because
I
was
constantly
in
the
hospital,
two,
three
days
in
the
hospital.
It
was
that
bad
throughout
secondary
school.

SPEAKER_02
3:52

What
makes
Vasyo's
story
even
more
striking
is
that
her
husband
is
a
physician,
and
even
then,
he
had
to
fight
again
and
again
for
her
care.

SPEAKER_00
4:02

I
remember
being
in
so
much
pain,
and
he's
reading
for
his
exams,
and
I'd
say,
open,
can
you
read
through
your
book
and
see
if
you
can
find
what
is
wrong
with
me,
you
know?
And
he
says,
Something
is
at
the
back
of
my
mind,
like,
I
don't
know
what
it
is,
but
something
is
almost
clicking,
but
not
clicking.
I
don't
know
what
it
is.
And
when
when
I
finally
heard
the
word
endometriosis,
I
remember
driving
back
home.
If
I
I
just
had
to
pack
and
I
called
him
and
I
said,
Dear,
have
you
ever
heard
of
endometriosis?
The
doctor
said
I
don't
have
it,
but
that's
the
probably
the
only
last
thing.
And
he
said,
Oh
my
goodness,
endometriosis,
oh
yeah,
it
fits
the
pill.
And
I
said,
What?
Are
you
serious?
You
know
what
endometriosis
is?
He
said,
Yes,
they
just
mentioned
it
once
in
medical
school.
They
teach
them
about
hundreds
of
thousands
of
diseases
and
conditions.
And
this
was
just
it
was
an
elective
class,
so
you
didn't
have
to
attend.
And
it
was
just
mentioned
as
a
rare
disease.

SPEAKER_02
5:05

One
of
the
myths
we
hear
so
often
is
that
you
can't
get
pregnant
with
endometriosis,
or
that
pregnancy
somehow
cures
it.
Vasio
has
three
daughters.
She
didn't
struggle
with
fertility,
and
yet
her
endometriosis
was
severe.
She
went
years
without

Naming Endometriosis At Last

SPEAKER_02
5:22

diagnosis,
allowing
this
disease
to
quietly
ravage
her
body.
She
turned
that
pain
into
advocacy
by
creating
the
documentary
Walking
Through
Walls.
A
raw,
heartbreaking
look
at
her
life,
her
family,
and
the
dreams
this
disease
tried
to
take.
Despite
everything,
Fasayo
still
has
joy.
She
still
laughs,
she
still
shows
up.
And
as
she
so
beautifully
shared,
while
this
disease
can
take
so
much,
it
can
also
give.
And
I
am
incredibly
grateful
for
the
friendship
that
I
have
with
Fasayo.
Her
story
is
branded
in
my
heart.
Another
story
that
deserves
its
own
space
is
Nikki
Phillips,
shared
across
episodes
180
and
181.
Nikki
and
I
met
because
of
this
podcast.
She
was
a
listener
first,
and
over
time
she
became
a
dear
friend.
Her
journey
reflects
what
so
many
people
experience
years
of
delated
diagnosis
while
living
with
PCOS,
adenomiosis,
and
endometriosis,
and
more.
She
brought
up
her
symptoms
again
and
again,
had
terrible
periods
from
a
young
age,
along
with
migraines,
fainting,
vomiting,
symptoms
that
were
repeatedly
dismissed
or
viewed
in
isolation
instead
of
as
part
of
a
bigger
picture.

SPEAKER_03
6:36

I
remember
I
passed
out
in
church
on
Easter
Sunday.
I
was
on
my
period
and
it
was
super
painful.
And
I
stood
up
and
I
didn't
feel
well

Pregnancy Myths And Reality

SPEAKER_03
6:45

and
I
fell
down
and
hit
my
head
on
a
pew
and
they
had
to
take
me
out
in
an
ambulance
because
I
kept
passing
out
and
I
get
to
the
ER
and
they're
like,
oh,
this
just
happens.
It's
called
some
vasalvagal
reaction.
I
don't
even
know
if
I'm
pronouncing
that
right,
but
just
this
happens
to
young
women
and
you'll
outgrow
it
and
you'll
be
fine.
And
it
did.
It
happened
repeatedly
throughout
up
until
I
was
in
college,
maybe
even
grad
school.
And
I
just
kind
of
would
deal
with
it.
But
by
that
point,
I
had
given
up
some
things
like
volleyball.
I
was
an
avid
volleyball
player
through
middle
school.
And
so
by
my
sophomore
year
in
high
school,
I
just
felt
like
I
couldn't
keep
up
with
the
conditioning.
I
switched
over
to
other
things
and
just
made
it
work.
I
would
always
have
to
take
lots
of
painkillers.
I'd
miss
school
occasionally,
but
I
didn't
think
anything
of
it.

SPEAKER_02
7:24

She
heard
all
the
familiar
lines.
Just
get
pregnant.
We
don't
see
anything.
This
is
normal.
Eventually,
Nikki
had
excision
surgery
and
is
doing
much
better,
but
so
much
of
her
journey
could
have
looked
different
had
she
been
believed
sooner.
She
also
courageously
shared
her
fertility
journey.
The
repeated
loss,
the
heartbreak,
and
the
things
that
were
said
to
her
during
one
of
the
most
vulnerable
seasons
in
her
life.
Things
that
were
shocking

Nikki’s Story Of Delayed Care

SPEAKER_02
7:52

and
yet
painfully
familiar
to
too
many
in
this
community.
One
of
the
most
honest
and
necessary
parts
of
this
conversation
was
about
parenting
with
endometriosis.
And
I
want
to
say
this
clearly.
But
parenting
while
living
with
chronic
illness
is
not
what
many
of
us
imagined
it
would
be.

SPEAKER_03
8:15

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.
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
son.
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
picked
up
on
it.
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
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.
So
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,

Loss, Fertility, And Unseen Grief

SPEAKER_03
9:21

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.

SPEAKER_02
9:41

There
is
love
and
there
is
grief,
and
often
they
exist
at
the
same
time.
Nikki
and
I
spoke
openly
about
what
it
means
to
parent
through
pain,
exhaustion,
and
limitations,
and
how
rarely
that
grief
is
acknowledged.
Beyond
her
story,
Nikki
has
made
a
profound
impact
on
my
life.
She
inspires
me,
she
challenges
me,
she
shows
up
for
this
community
with
honesty
and
heart,
and
she
has
become
one
of
the
biggest
cheerleaders
behind
this
podcast.
I
am
deeply
grateful
for
her.
Another
voice
that
inspired
me
this
year
was
Kate
Helen
Downey.
In
episode
139,
we
talked
about
periods,
why
they're
so
painful,
why
answers
take
so
long,
and
why
so
many
of
us
are
left
doing
our
own
research.

SPEAKER_01
10:29

Trying
to
answer
the
question,
what
is
actually
hurting
when
I
have
cramps?
Like
what
is
what
are
the
mechanics
of
this
pain?
And
why
do
sometimes
I
get
quote
unquote
regular
cramps
that
are
like
unpleasant,
uncomfortable,
but
not
debilitating?
And
then
sometimes
I
get
what
I
call
death
cramps,
which
are
excruciating,
debilitating.
They
make
me
throw
up,
they
make
me
pass
out.
And
so
what
is
something
different
actually
physically
happening?
Or
is
it
just
regular
cramps
like
turned
up
to
a
15?
You
know,
I
had
this
question.
Doctors
couldn't

Parenting While In Chronic Pain

SPEAKER_01
11:08

answer
it
for
me.
Uh,
so
I
went
to
a
lab
in
Evanston,
Illinois
called
the
GYRL
lab,
uh,
the
gynecological
research
lab.
And
they
are
specifically
studying
dysmenorrhea,
which
is
the
medical
term
for
uh
severe
period
pain.
And
they're
doing
things
that
I
thought
were
like
very
basic
research
questions
that
you
would
think
at
this
point
in
2025
have
been
answered,
had
been
answered
in
the
60s
or
70s.
Right.
But
they
haven't.

SPEAKER_02
11:41

Through
her
podcast,
Cramped,
Kate
brings
humor,
curiosity,
and
compassion
into
conversations
that
deeply
need
all
three.
I
love
connecting
with
other
podcast
hosts
because
there
is
something
incredibly
validating
about
sitting
across
from
someone
who
gets
it,
who
asks
the
questions
that
no
one
taught
us
how
to
ask,
and
who
wants
to
make
things
better
for
the
next
person.
What
these
episodes
reminded
me
is
this
stories
matter,
accuracy
matters,
and
community
matters.
This
podcast
exists
because
misinformation
still
harms
people,
because
dismissal
still
happens,
and
because
none
of
us
should
have
to
navigate
this
alone.
If
you
take
anything
from
these
conversations,
I
hope
it's
this.
You're
not
imagining
it,
you're
not
weak
for
needing
help,
and
even
in
the
hardest
stories,
there
is
still
room
for
connection,
meeting,
and
yes,
joy.
Sometimes
that's
enough
to
keep
us
going.
Oh,
and
here's
what
you
can
put
into
your
holiday
survival
guide.
Bring
your
own
survival
kit,
meds,
heating
packs,
safe
snacks,
emotional
support
items.
Because
going
around
traveling
and
being
in
places
that
aren't
your
home
can
be
challenging.
It's
okay
to
be
prepared
and
not
feel
bad
for
doing
that.
Don't
let
anyone
stop
you
from
doing
what's

What’s Actually Hurting During Cramps

SPEAKER_02
13:05

best
for
you.
As
we
wrap
up
this
reflection,
I'm
always
struck
by
just
how
much
learning
lives
inside
these
conversations.
Looking
back,
it's
not
just
about
the
information.
It's
what
continued
to
inspire
me,
challenge
me,
and
sometimes
gently
nudge
me
to
see
things
a
little
differently.
My
hope
is
that
something
you
heard
today
sparked
a
moment
of
recognition,
curiosity,
or
even
a
quiet,
huh,
that
makes
sense
now.
So
here's
what
I'm
gonna
challenge
you
with.
Take
one
idea
from
this
episode,
just
one,
and
let
it
sit
with
you.
You
don't
have
to
fix
anything,
change
anything,
or
suddenly
become
a
brand
new
person
by
Monday.
Growth
counts
even
when
it
happens
in
sweatpants.
Be
gentle
with
yourself.
Honor
how
far
you've
come
this
year,
and
remember,
you're
allowed
to
learn,
unlearn,
rest,
and
repeat.
Thank
you
for
reflecting
with
me.
Continue
being
curious
until
next
time.
Continue
advocating
for
you
and
for
others.