Endo Battery Fast Charged: EP 12

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Endo Battery Fast Charged: EP 12
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Empowerment through knowledge is our mantra, and we invite you to be an active part of the endometriosis advocacy movement. Engage with thought-provoking articles, share your interests and questions, and understand the critical role of self-advocacy and community support. We aim to arm you with the information needed to advocate for yourself and loved ones effectively. Stay engaged, stay informed, and help us shape a hopeful future for endometriosis care by continuing the conversation beyond this episode.

The Lancet. Endometriosis: addressing the roots of slow progress. Lancet. 2024 Oct 5;404(10460):1279.

 Ann Thomas, MD, MPH for Medscape. “Does the Road to Treating Endometriosis Start in the Gut?” Medscape, 2024, 

New Therapeutics in Endometriosis: A Review of Hormonal, Non-Hormonal, and Non-Coding RNA Treatments

What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis

Addressing Challenges in Endometriosis Pain Communication Between Patients and Doctors: The Role of Language

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Website endobattery.com

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Challenges in Endometriosis Care and Research

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

is

EndoBattery

Fast

Charged

charging

and

empowering

your

life

with

knowledge
.

Welcome

back

to

EndoBattery

Fast

Charged
.

Today

we're

breaking

down

some

super

interesting

studies

and

research

so

you

can

be

both

informed

and

empowered
,

no

PhD

required
.

My

goal

is

to

arm

you

with

knowledge

to

help

you

advocate

for

yourself
,

whether

it's

in

a

doctor's

office

or

just

feeling

confident

in

your

own

skin
.

Now
,

before

we

dive

in
,

quick

reminder

I'm

not

a

doctor

and

this

isn't

medical

advice
.

Think

of

it

as

more

of

like

your

friend

texting

you

a

random

Google

fact

at

2

am
,

friend

texting

you

a

random

Google

fact

at

2

am
.

Remember
,

correlation

does

not

equal

causation
.

So

if

you're

ready
,

let's

get

charged

up

and

get

started
.

Speaker 1
1:12

Oh
,

the

Lancet

is

back

at

it

again
,

politely

reminding

the

world

that

endometriosis

care

is

still

a

hot

mess
.

In

their

recent

editorial
,

they

basically

gave

a

gentle

nudge
,

or

maybe

a

frustrated

shove

to

the

global

medical

community

saying
,

hey
,

remember

that

whole

thing

about

better

diagnostics

and

treatment

for

endometriosis
.

Yeah
,

that's

still

a

thing
,

and

we're

nowhere

near

done
.

Let's

break

this

down

In

the

article

titled

Endometriosis

Addressing

the

Roots

of

Slow

Progress

highlights

that
,

despite

all

the

noise

about

improving

care

for

endometriosis
,

huge

gaps

remain

in

actually

doing

something

about

it
.

We're

talking

disparities

in

access

to

care
,

lack

of

research

funding

and

the

glorious

world

of

gender

bias
,

where

periods

and

pelvic

pain

are

somehow

still

considered

niche

problems
.

It's

like

medicine

is

trapped

in

a

time

loop

and

someone

forgot

to

set

the

clock

forward

a

few

decades
.

But

wait
,

it

gets

better
.

Speaker 1
2:14

The

editors

didn't

shy

away

from

calling

out

the

governments
.

Looking

at

you
,

australia

Sure
,

they've

got

their

five-year

action

plan
,

but

you

know

what
?

They

don't

have

Proof

that

it's

working
.

You'd

think

that

after

five

years

we'd

have

some

sort

of

progress

report

on

how

these

national

plans

are

actually

improving

things
.

But

no

crickets
.

We've

got

some

extra

funding

sprinkled

in

here

and

there
,

but

the

funding

gap

between

endometriosis

and

other

chronic

diseases

is

like

comparing

pocket

change

to

a

trust

fund

In

true

Lancet

fashion
.

They

also

pointed

out

the

obvious

Without

measurable

goals
,

real

interventions

or

a

complete

overhaul

in

how

we

talk

about

periods
,

pain

and

gendered

health
,

we're

not

going

to

get

very

far
.

Honestly
,

it's

almost

like

this

world

is

hoping

that

if

they

just

ignore

endo

long

enough
,

it'll

sort

itself

out
.

And

spoiler

alert
,

it

doesn't

and

it

won't
.

So
.

Until

we

see

real

change

in

how

governments
,

healthcare

systems

and

society

at

large

treats

endometriosis
,

it's

safe

to

say

we're

going

to

be

stuck

in

a

slow

motion

nightmare

for

a

little

while

longer
.

Oh
,

endometriosis
.

Just

when

we

think

we've

got

it

all

figured

out
,

another

study

comes

along

to

make

us

question

everything
.

Speaker 1
3:34

Let's

take

a

look

at

this

next

study
,

titled

Does

the

Road

to

Treating

Endometriosis

Start

in

the

Gut
?

Researchers

are

claiming

to

be

on

the

road

to

developing

a

non-invasive

stool

test

to

diagnose

the

disease
,

potentially

replacing

the

gold

standard

laparoscopy
.

Their

discovery
?

Something

to

do

with

the

bacterial

metabolites

found

in

your

gut
.

Yes
,

the

place

you

thought

you

only

had

to

worry

about
.

Taco

night

fallout
.

That's

the

place
.

But

hold

on

to

your

horses

or

your

intestines
.

Well
,

it's

exciting

to

hear

about

non-invasive

tests

because
,

really
,

who

enjoys

surgery
?

This

is

very

much

in

the

early

days

category
,

like

if

this

were

a

Netflix

show
,

we'd

still

be

in

the

pilot

episode

where

they're

working

out

the

characters

and

the

plot
.

Speaker 1
4:19

Sure
,

these

researchers

found

that

gut

bacteria

and

their

metabolites

could

be

linked

to

lesion

growth

in

mice
.

But
,

as

we

all

know
,

what

happens

in

a

mouse

doesn't

always

stay

relevant

in

humans
.

Dr

Tatiana

Burnett

of

Mayo

Clinic

summed

it

up

perfectly

Mouse

models

are

great
,

but

we've

been

burned

before

by

promising

results

that

never

panned

out

in

humans
.

Yes
,

we've

all

heard

it

before
.

Whether

it's

a

magical

cure

from

a

mouse

study

or

your

aunt's

new

essential

oil

blend
,

the

road

to

success

is

paved

with

a

lot

of

maybes
.

Speaker 1
4:52

So

while

you

might

feel

optimistic

at

the

thought

of

swapping

surgery

for

poop

tests
,

let's

not

start

celebrating

just

yet
.

As

Dr

Ann

Thomas

put

it
,

this

small

sample

size

needs

a

much

larger

study

before

we

can

even

think

about

making

this

the

next

big

thing

in

endocare
.

And

that's

not

to

throw

shade

at

the

researchers
.

They're

on

to

something
,

but

we've

got

to

be

cautious
.

Think

of

this

like

baking

Just

because

you

found

the

perfect

cookie

recipe

in

a

tiny

toaster

oven

doesn't

mean

it'll

work

in

an

industrial

kitchen
.

We

need

more

trials
,

more

time

and

more

patience
.

So

is

the

gut

the

key

to

diagnosing

endo
?

Maybe

Should

we

start

pooping

probiotics

like

candy
?

Probably

not
.

Let's

give

science

its

due

time

to

figure

out

if

we'll

ever

be

trading

laparoscopy

for

stool

samples
.

For

now
,

let's

just

be

cautiously

optimistic

and

maybe

grab

a

snack

and

with

another

study

on

endometriosis

treatments

full

of

promise

and

new

ideas
.

But

let's

see

what

the

real

story

is
.

Speaker 1
5:55

This

review

titled

New

Therapeutics

in

Endometriosis

a

Review

of

Hormonal
,

non-hormonal

and

Non-Coding

RNA

Treatments

covers

a

range

of

therapeutic

options

from

hormonal
,

non-hormonal

to

that

mysterious

beast

called

non-coding

RNA

or

NCRNA
.

Sounds

fancy
,

right
?

Well
,

it's

mostly

the

same

old

players

with

a

bit

of

a

facelift
.

First

off
,

they

dive

into

hormonal

therapies
.

Yep
,

the

usual

suspects

like

GnRH

agonists
,

progestins

and

estrogen

blockers

take

the

stage

trying

to

convince

us

they're

the

gold

standard

in

treatment
.

Sure
,

they

can

suppress

symptoms

for

a

bit
,

but

let's

not

forget

their

lovely

side

effects

hot

flashes
,

mood

swings

and

bone

loss
.

Who

wouldn't

want

to

feel

like

a

menopausal
,

slightly

unhinged

skeleton
?

It's

a

tale

as

old

as

time
.

Suppress

the

hormones

and

hope

for

the

best
.

Oh
,

and

don't

get

too

attached

to

these

solutions

because

spoiler

alert

they

don't

cure

endo
,

just

slap

a

band-aid

on

it
.

Speaker 1
6:59

Then

comes

the

non-hormonal

therapies
,

which

sounds

like

a

breath

of

fresh

air
,

until

you

realize

how

experimental

they

still

are
.

There's

a

lot

of

talk

about

immune

modulating

therapies

and

anti-inflammatories
,

which

makes

sense

given

endo's

inflammatory

nature
.

But

here's

the

kicker

very

little

clinical

data
.

That's

like

window

shopping

for

a

car

that

hasn't

been

built

yet
.

Looks

nice

in

theory
,

but

you

can't

drive

it

off

the

lot
.

Speaker 1
7:26

The

real

fun

begins

with

non-coding

RNA
.

In

case

you

were

wondering
,

these

are

small

bits

of

genetic

material

that

don't

code

for

proteins

but

can

influence

gene

expression
.

The

study

suggests

that

targeting

NC

RNAs

could

help

regulate

endo-related

genes
,

possibly

leading

to

breakthroughs
.

It

sounds

groundbreaking
,

but

we're

still

in

the

maybe

someday

phase
,

so

don't

hold

your

breath

for

this

to

show

up

at

your

doctor's

office

anytime

soon
.

Overall
,

the

study

does

a

pretty

decent

job

of

highlighting

potential

treatments
,

but

the

excitement

is

pretty

tampered

by

the

reality

that

most

of

this

stuff

is

still

under

research
.

Sure
,

hormonal

therapies

are

tried

and

true-ish
,

but

with

their

side

effects
,

who's

really

winning

here
?

Non-hormonal

and

ncrna

therapies

might

eventually

lead

to

something

real
,

but

for

now

it's

all

just

whispers

of

what

could

be

if

the

stars

align

and

clinical

trials

don't

flop
.

So

if

you're

looking

for

actual

viable

treatments
,

you

might

want

to

check

back

in

a

few

years
.

For

now

it's

a

lot

of

this

could

work
,

followed

by

a

collective

shrug

In

continuing

to

talk

about

diagnosis
,

let's

talk

about

the

delightful

experience

of

finally

being

diagnosed

with

endometriosis
.

Speaker 1
8:44

A

diagnosis
,

for

most
,

comes

after

a

scavenger

hunt

of

medical

visits
,

tests

and

being

told

it's

just

period

pain

honey
.

This

study
,

titled

what's

the

Delay
,

digs

into

the

reality

of

why

so

many

take

years

to

get

diagnosed
,

as

if

finding

endo

is

a

twisted

medical

version

of

hide

and

seek
.

The

problem

isn't

just

in

our

heads
,

despite

what

we're

often

told
.

According

to

this

study
,

the

diagnosis

delay

isn't

because

women

aren't

trying

hard

enough
.

It's

because

they're

consistently

brushed

off

or

misdiagnosed

by

doctors

who

seem

to

think

that

pelvic

pain

is

just

a

rite

of

passage
.

Many

women

report

being

told

to

suck

it

up
,

pop

a

painkiller

and

carry

on
.

Speaker 1
9:24

The

study

reveals

how

medical

professionals

routinely

dismiss

or

downplay

women's

pain
,

creating

a

perfect

storm

of

frustration
,

self-doubt

and

the

feeling

that

their

body

is

betraying

them

for

no

reason
.

Until

someone

finally

figures

out

that

you

know

endometriosis

is

real
.

It

gets

better
.

Even

when

women

do

finally

get

referred

to

a

specialist
,

the

road

to

diagnosis

is

still

anything

but

smooth
.

One

participant

mentioned

waiting

over

a

year

for

a

consultation

only

to

be

handed

another

round

of
.

It's

probably

nothing

serious
.

The

study

highlights

how

this

lack

of

urgency

from

healthcare

providers

drags

out

the

process
,

making

women

feel

like

they're

the

crazy

ones
,

when

really

they're

just

trapped

in

a

medical

maze
.

But

wait
,

there's

more
.

Of

course

there's

more

Once

you

finally

score

that

diagnosis
.

It's

not

exactly

a

victory

parade
.

The

emotional

impact

of

years

of

gaslighting
,

frustration

and

untreated

pain

levels

leaves

many

feeling

a

mix

of

relief

and

rage
.

The

study

points

out

that

a

diagnosis

doesn't

magically

fix

the

years

of

suffering
,

but

at

least

it

puts

the

name

to

it

right
,

and

that's

supposed

to

be

progress
,

apparently
.

In

the

end
,

this

study

does

a

great

job
,

pointing

out

the

obvious

the

healthcare

system

is

failing

women

with

endometriosis
.

The

delay

in

diagnosis

is

like

a

slow

motion

train

wreck
,

and

the

only

thing

women

can

do

is

keep

advocating

for

themselves
,

hoping

one

day

the

medical

world

will

get

its

act

together

and

stop

treating

them

like

they're

overreacting

to

a

little

cramp
.

Speaker 1
10:55

This

last

study
,

titled

Addressing

Challenges

in

Endometriosis

Pain

Communication

Between

Patients

and

Doctors

the

Role

of

Language
,

dives

into

the

critical

issue

of

communication

between

endometriosis

patients

and

doctors
,

specifically

focusing

on

how

language

shapes

the

way

pain

is

understood

and

treated
.

One

of

the

core

challenges

it

addresses

is

that

endometriosis

pain

is

often

downplayed

or

misunderstood

because

patients

and

doctors
,

thank

you
,

missed

and

not

receiving

appropriate

care
.

The

article

highlights

that

many

patients

struggle

to

find

the

right

words

to

explain

their

pain
,

which

can

be

complex

and

varied
.

Endometriosis

pain

isn't

just

about

the

intensity
,

but

also

about

the

location

and

type
,

like

burning

or

stabbing
,

and

how

it

affects

daily

life
.

However
,

when

doctors

expect

pain

to

fit

into

a

standard

mold

of

medical

terminology
,

they

might

not

take

the

patient's

experiences

seriously

if

it

doesn't

match

their

expectations
.

This

can

leave

patients

feeling

invalidated

and

cause

delays

in

diagnosis

or

effective

treatment
.

Another

key

point

is

that

patients

may

hesitate

to

fully

describe

their

pain
,

either

due

to

fear

of

not

being

believed

or

because

they've

grown

used

to

their

suffering
.

This

can

result

in

underreporting
,

further

complicating

treatment

decisions
.

Speaker 1
12:22

This

study

emphasizes

the

importance

of

doctors

asking

the

right

questions

and

creating

a

more

empathetic

environment

where

patients

can

feel

safe

to

describe

their

pain

in

their

own

words
.

The

research

suggests

that

improving

this

communication

could

enhance

the

patient-doctor

relationship

and

lead

to

better

treatment

outcomes
.

A

more

patient-centered

approach
,

where

doctors

can

take

the

time

to

really

listen

and

interpret

patients'

descriptions

of

pain
,

could

reduce

the

gap

between

patient

experience

and

medical

evaluation
.

Training

for

doctors

to

better

understand

the

emotional

and

personal

language

of

pain

could

also

be

a

step

towards

a

more

accurate

diagnosis

and

effective

treatment
.

Ultimately
,

the

study

underscores

that

both

patients

and

doctors

need

to

collaborate

in

redefining

how

pain

is

communicated
.

This

might

involve

educating

patients

on

how

to

describe

their

symptoms

in

ways

that

align

with

medical

evaluation
,

while

also

encouraging

doctors

to

be

more

receptive

to

diverse

expressions

of

pain
.

By

bridging

this

language

gap
,

both

sides

can

work

toward

faster
,

more

comprehensive

and

more

effective

care

for

endometriosis

patients

Empowering Endometriosis Advocacy

Speaker 1
13:26

.

Speaker 1
13:26

Thanks

for

joining

me

on

this

episode

of

EndoBattery

Fast

Charged
.

If

you

found

these

articles

intriguing

and

fascinating
,

remember

that

you

can

read

more

about

them

in

the

description

of

this

podcast
.

If

you

have

an

article

you

want

to

learn

more

about

or

for

me

to

break

down
,

email

them

to

me

at

contact

at

endobatterycom
.

And

until

next

time
,

continue

advocating

for

you

and

for

those

that

you

love
.

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