Endo Battery Fast Charged: EP 10

Understanding Endometriosis and Related Conditions

Speaker 1
0:01

Welcome

to

Endobattery

Fast

Charged
,

a

series

dedicated

to

keeping

you

informed

and

empowered

in

the

realm

of

endometriosis
.

Teaming

up

with

board-certified

patient

advocates
,

we

bring

you

the

latest

articles
,

research

and

insights

to

equip

you

with

accurate

information

and

a

deeper

understanding
.

Whether

you're

expanding

your

knowledge
,

staying

updated

or

seeking

clarity
,

you're

in

the

right

place
.

I'm

your

host
,

alana
,

and

this

is

Endobattery

Fast

Charged

charging

and

empowering

your

life

with

knowledge
.

Welcome

back

to

Endobattery

Fast

Charged
,

ready

to

supercharge

your

understanding

of

endometriosis
.

We've

got

the

latest

research

hot

off

the

press
.

But

remember
,

just

because

two

things

are

linked

doesn't

mean

they're

BFFs
.

Correlation

doesn't

equal

causation
.

So

grab

your

mental

jumper

cables

and

let's

dive

into

the

data
.

This

first

article

comes

to

you

because

it

took

a

little

bit

of

a

personal

turn

and

research

for

me

to

be

able

to

find

something

that

correlated

with

the

pain

that

I

was

experiencing
.

So
,

without

further

ado
,

this

next

article

sent

to

me
,

titled

Interior

Cutaneous

Nerve

Entrapment

Syndrome

an

Underestimated

Diagnosis
.

Picture

this

you've

got

this

nagging
.

What

in

the

world

is

going

on
?

Much

like

I

did
,

kind

of

pain

in

your

abdomen

and

everyone

keeps

shrugging

and

saying

maybe

it's

just

stress
,

or

maybe

you

know

it's

in

sort

of

random

explanation
.

But

little

did

they

know

that

you

might

be

dealing

with

anterior

cutaneous

nerve

entrapment

syndrome
,

or

we're

going

to

call

it

ACNES
,

an

underestimated

condition

that

loves

to

fly

under

the

radar

like

a

stealthy

ninja
?

Now
,

what

is

anterior

cutaneous

nerve

entrapment

syndrome
,

or

ACNES
,

you

ask
?

Simply

put
,

it's

when

one

of

the

nerves

in

the

front

of

your

abdomen

gets

squished
,

causing

a

sharp

burning

pain
.

Doctors

often

overlook

it

because
,

well
,

it

doesn't

show

up

on

regular

tests
.

Think

of

it

like

that

one

friend

who's

really

good

at

hiding

during

a

game

of

hide

and

seek

you

know

they're

there
,

but

finding

them
?

That's

the

real

challenge
.

Here's

where

it

gets

interesting

for

endo

warriors
.

You're

already

well-versed

in

mysterious

pains

and

feeling

like

a

medical

anomaly
.

Speaker 1
2:09

Endometriosis

can

act

as

a

sidekick

to

acnes
.

The

constant

inflammation

from

endo

can

cause

nerve

irritation

and

before

you

know

it
,

you've

got

pain

in

places

you

didn't

even

know

you

could

hurt
.

It's

like

your

body

decided

to

host

a

surprise

party

and

pain

was

invited
.

For

people

with

endometriosis
,

especially

acnes

can

add

to

the

confusion
.

You're

used

to

attributing

abdominal

pain

to

endo

because
,

let's

be

real
,

it's

usually

the

suspect
.

But

what

if

this

new

discomfort

is

actually

coming

from

an

angry

nerve

that's

tangled

up
?

It's

like

playing

a

detective

with

your

body

in

this

crime

scene

and

everything

is

a

suspect
.

Spoiler

alert

Agnes

is

the

one

guilty

of

throwing

you

into

a

loop

of

pain

you

didn't

sign

up

for
.

So

what

can

you

do
?

Well
,

the

diagnosis

usually

comes

after

your

dog

presses

on

a

specific

spot

in

your

abdomen

and

you

jump

like

it's

been

hit

with

a

laser
.

Not

a

fun

test
,

but

hey
,

it

works
.

And

the

treatment
?

A

mix

of

nerve

blocks
,

physical

therapy

and

sometimes

surgery
.

Think

of

it

as

telling

that

nerve

enough

is

enough
.

And

if

you've

got

endo
,

make

sure

your

medical

team

keeps

an

eye

on

the

whole

picture
,

because

when

endo

and

acnes

gang

up
,

you've

got

to

be

ready

to

show

them

who's

boss
.

In

conclusion

for

this

article
,

while

acnes

might

be

sneaky
,

it's

no

match

for

the

knowledge

you've

got

about

your

body
.

Just

remember

whether

it's

endometriosis
,

nerve

entrapment

or

both
,

you're

the

expert

in

your

pain
,

so

keep

pushing

for

answers
.

Let's

continue

to

look

at

other

co-challenges

that

kind

of

like

to

pair

up

with

endometriosis

In

this

next

article

titled

Association

Between

Endometriosis

and

Arthritis

Results

from

NHANES

1999-2006

Genetic

Correlation

Analysis

a

Mandelian

Randomization

Study
.

Speaker 1
4:01

So

imagine

your

body

is

at

a

party

that

no

one

really

wanted

to

throw
.

But

here

we

are
.

Endometriosis

and

arthritis

are

those

guests

who

show

up

uninvited

and

just

won't

leave
.

Previously
,

researchers

noticed

that

these

two

party

crashers

seem

to

have

a

thing

for

each

other
,

especially

when

it

comes

to

rheumatoid

arthritis

or

RA
.

But

here's

the

kicker

they

couldn't

figure

out

if

they

were

related

by

blood

or

genetics
,

or

just

two

random

strangers

who

happened

to

meet

at

the

same

dull

party
.

Researchers

decided

to

play

matchmaker
,

or

maybe

matchbreaker
.

In

trying

to

figure

out

if

these

two

correlations

were

actually

linked

through

genetics
,

they

whipped

out

some

fancy

science

tools
,

including

a

Mendelian

randomization
.

Genetic

correlation

analysis

Sounds

impressive
.

Right

After

number

crunching

and

head

scratching
,

the

scientists

discovered

that

genetics

wasn't

to

blame

for

these

two

troublemakers

teaming

up
.

Speaker 1
4:53

So

if

you

were

hoping

to

blame

your

genetics

for

this

one
,

no

luck
.

But

don't

start

celebrating

just

yet
.

While

genetics

didn't

get

the

blame
,

the

researchers

did

confirm

that

there's

a

pretty

strong

link

between

endometriosis

and

rheumatoid

arthritis
.

It's

like

that

moment

when

you

find

out

two

of

your

friends

who

are

unlikely

to

get

along

started

hanging

out

without

you
.

They've

clearly

connected
,

but

nobody's

really

sure

why
.

Doctors

are

now

being

told

to

keep

an

eye

out

for

patients

with

endometriosis
,

as

they

might

also

be

at

risk

for

RA
.

It's

like

that

classic

warning

if

you

see

one
,

the

other

might

not

be

far

behind
.

But

the

real

twist

the

researchers

are

saying
,

hey
,

let's

not

focus

on

genetics
,

there

might

be

other

things

at

play

here
.

So

the

mystery

of

why

these

two

conditions

love

each

other

so

much

continues
,

and

further

investigation

is

definitely

in

order
.

Speaker 1
5:46

In

this

next

recent

study

that

was

published
,

titled

Transgender

and

Non-Binary

People's

Experience

of

Endometriosis
,

researchers

took

a

deep

dive

into

the

world

of

transgender

and

non-binary

folks

living

with

endometriosis

and

surprise
,

surprise
,

they

found

that

navigating

this

already

challenging

condition

comes

with

even

more

twists

and

turns

when

gender

identity

is

thrown

into

the

mix
.

It's

like

trying

to

assemble

a

piece

of

IKEA

furniture

with

half

the

instructions

missing

or

half

the

sick

man's

arms

and

legs

missing
,

except

the

stakes

are

much

higher

and

there's

no

Allen

wrench

to

be

found
.

The

researchers

highlighted

the

additional

layers

of

diagnostic

delays
,

because

why

get

diagnosed

late

when

you

can

get

diagnosed

later
?

But

beyond

the

logistical

frustrations
,

there's

an

emotional

roller

coaster

that

often

accompanies

the

journey
.

Imagine

symptoms

that

not

only

cause

physical

pain

but

also

trigger

gender

dysphoria
.

That's

like

trying

to

outrun

a

bear

while

simultaneously

swatting

away

a

swarm

of

bees
.

You're

dealing

with

two

battles

at

once
,

and

neither

one

is

particularly

fun
.

Then

there's

this

concept

of

on-home

likeness
,

which

sounds

like

it

could

be

a

trendy

new

design

aesthetic
,

but

it's

actually

about

feeling

disconnected

from

your

body

and

the

world

around

you
.

Picture

living

in

a

house

where

the

furniture

rearranges

itself

every

night

while

you're

sleeping
.

The

disorientation
,

helplessness

and

despair

yeah
,

that's

what

gender

diverse

people

with

endometriosis

are

up

against

as

they

try

to

find

their

footing

in

a

world

where

the

healthcare

system

often

doesn't

even

have

a

map
.

The

authors

of

the

study

didn't

just

stop

at

pointing

out

the

problems
.

They

wave

the

advocacy

flag

high
,

calling

for

more

support

and

awareness
.

Because
,

let's

face

it
,

when

you're

dealing

with

endometriosis

and

navigating

gender

identity
,

the

last

thing

you

need

is

a

healthcare

system

that's

still

using

a

rotary

phone
.

It's

2024
.

It's

about

time

we

ensure

that

everyone

gets

the

inclusive
,

timely

care

they

deserve
.

After

all
,

the

only

delay

anyone

should

ever

experience

is

when

their

streaming

service

buffers

at

the

worst

possible

moment
,

not

when

they're

seeking

life-changing

medical

care

Complexities of Endometriosis and Invalidation

Speaker 1
7:54

.

Speaker 1
7:54

For

this

next

study
,

I

want

you

to

imagine

that

now

your

ovaries

are

playing

a

tricky

game

of

hide-and-seek
,

but

with

a

twist

Instead

of

just

hiding
,

they've

decided

to

make

things

more

complicated

by

developing

these

little
,

or

sometimes

big

cysts

called

endometriomas
.

And
,

of

course
,

like

any

good

game

of

hide-and-seek
,

the

stakes

get

higher

the

longer

you

play
.

In

a

recent

study

titled

Association

Between

Ovarian

Endometriomas

and

Stage

of

Endometriosis
,

researchers

decided

to

play

detective

but

not

the

mysterious

kind

and

figure

out

that

when

these

endometriomas

pop

up

on

just

one

ovary
,

it's

usually

a

sign

that

you're

dealing

with

at

least

stage

3

endometriosis
.

That's

like

getting

to

the

hard

level

of

a

video

game

Things

are

tricky
,

but

you're

still

managing
.

But

when

the

cysts

decide

to

show

up

on

both

ovaries
,

you're

in

stage

4

territory
,

which

is

more

like

playing

the

game

on

extreme

mode
,

where

the

enemies

are

tougher

and

the

challenges

keep

piling

up
.

Speaker 1
8:54

The

thing

is
,

these

double-sided

endometriomas

don't

just

hang

out

alone
.

They

bring

their

buddy

deep
,

infiltrating

endometriosis
,

and

together

they

make

surgery

a

bit

like

trying

to

untangle

a

really

gnarly

knot

in

your

favorite

necklace

it

takes

longer
,

requires

some

serious

skill

and

there's

always

a

risk

you

might

make

things

worse

if

you're

not

careful
.

So

what's

the

moral

of

the

story
?

If

your

ovaries

are

gearing

up

for

a

serious

game
,

you

want

the

best

player

on

your

side
.

Translation

a

high

volume

endometriosis

specialist

who

knows

their

way

around

these

tricky

cases

is

essential

because

when

it

comes

to

endometriomas

and

endosurgery
,

it's

not

just

about

finding

what's

hidden
.

It's

about

planning

the

best

strategy

to

deal

with

whatever

shows

up
.

You

know

what

has

shown

up
?

Speaker 1
9:42

The

latest

study

by

endometriosis

researcher

and

scientist

Allison

Bentempo
,

titled

conceptualizing

symptom

invalidation

as

experienced

by

patients

with

endometriosis
.

She's

been

on

a

roll
,

and

her

newest

research

is

all

about

putting

a

name

to

something

many

with

endometriosis

have

unfortunately

experienced

symptom

invalidation
.

In

this

study
,

bontempo

delves

into

the

frustrating

world

of

what

happens

when

doctors

just

don't

seem

to

get

it
,

whatever

it

may

be

for

you

on

any

given

day
.

Using

a

mixed

method

approach
,

which

sounds

fancy

but

basically

means

she

just

looked

at

a

whole

bunch

of

data

from

different

angles
,

montempo

analyzed

responses

from

over

1,038,000

patients

Yep
,

that's

a

million

plus

voices

saying

hey
,

we're

not

being

heard
.

Speaker 1
10:33

Her

research

highlights

how

differences

in

understanding

between

patients

and

clinicians

create

a

chasm

for

invalidation
.

For

example
,

when

a

patient

says

this

pain

is

destroying

my

life
,

a

clinician

counters

with

it's

just

period

pain
.

That's

more

than

just

a

miscommunication
.

It's

a

gut

punch

to

the

patient's

reality
.

But

it

doesn't

stop

there
.

The

study

also

dug

into

how

beliefs

about

what

causes

endometriosis
,

the

timeline

of

illness

and

even

the

effectiveness

of

treatments

can

lead

to

patients

feeling

dismissed

or

doubted
.

Bontempo's

findings

show

that

invalidation

often

occurs

when

clinicians

either

question

a

patient's

motives

or

don't

fully

investigate

their

symptoms
.

It's

like

adding

insult

to

injury
.

Not

only

are

you

in

pain
,

but

now

you're

being

treated

like

your

pain

doesn't

matter
.

So

Bontempo's

work

doesn't

just

confirm

what

patients

have

been

saying

for

years
.

It

gives

it

a

name
,

a

framework

and

the

data

to

back

it

up
.

Speaker 1
11:30

In

a

world

where

patients

often

feel

like

they're

shouting

into

the

void
,

this

research

is

a

much

needed

megaphone
.

So

here's

the

thing

You're

dealing

with

endometriosis

and

you've

had

the

whole

shebang

surgery
,

treatments
,

the

works
,

you

think

you're

finally

in

the

clear
,

only

for

those

pesky

symptoms

to

creep

back

up

on

you
.

Turns

out

this

whole

reoccurrence

business

is

a

bit

of

a

wild

card
.

An

Australian

research

team

decided

to

tackle

this

head

on

in

a

study

titled

predicting

disease

recurrence

in

Patients

with

Endometriosis

an

Observational

Study

and

they

did

so

with

some

pretty

broad

strokes
.

Now
,

when

they're

talking

about

reoccurrence
,

they're

not

just

talking

about

new

lesions

popping

up

that

a

surgeon

can

confirm

while

they're

poking

around

inside
.

No
,

they're

also

counting

stuff

that

shows

up

on

imaging

scans
,

or

even

just

symptoms

that

make

you

feel

like

you're

stuck

in

a

never-ending

cycle

of

deja

vu
.

With

definitions

this

wide
,

it's

no

wonder

they

found

reoccurrence

rates

all

over

the

map
.

Speaker 1
12:30

But

here's

where

it

gets

interesting

or

frustrating
,

depending

on

your

perspective
.

The

study

found

that

a

few

key

things

could

make

you

more

likely

to

deal

with

this

dreaded

reoccurrence
.

Top

of

the

list

the

triple

threat

of

adenomyosis
,

bowel

endometriosis

and

adhesions
.

It's

like

the

universe

decided

to

throw

everything

at

you

at

once
.

However
,

there's

a

twist

Adenomyosis

likes

to

play

a

sneaky

game

of

mimicking

endometriosis

symptoms

so

well

that

even

the

experts

might

be

fooled
.

The

researchers

pointed

out

that

some

people

who

go

back

under

the

knife

for

what

they

think

is

reoccurring

endometriosis

might

actually

be

dealing

with

adenomyosis

instead
.

It's

the

ultimate

bait

and

switch
,

and

not

the

kind

you'd

want

to

sign

up

for
.

Speaker 1
13:14

So

what's

the

takeaway
?

If

you've

got

bowel

lesions
,

adhesions

or

adenomyosis

hanging

out

in

your

body
,

your

odds

of

facing

down

endometriosis

again

after

surgery

might

be

higher
.

The

researchers

are

basically

saying
,

hey
,

keep

an

eye

on

these

factors

because

they're

troublemakers

in

the

world

of

endometriosis
.

In

other

words
,

the

road

to

recovery

can

be

bumpy
,

but

understanding

the

risks

might

help

you

navigate

it

a

little

more

smoothly
.

Thank

you

for

joining

me

on

this

episode

of

Endobattery

Fast

Charged
.

I

hope

you

feel

empowered

by

the

information

that

you

just

now

heard
.

If

you

want

to

research

these

articles

more
,

remember

all

the

links

are

in

the

description

of

this

podcast
.

I

hope

you

feel

empowered

to

continue

advocating

for

better

change

and

care

in

the

endometriosis

community
.

Until

next

time
,

continue

advocating

for

you

and

for

those

that

you

love
.