The Gut-Brain Connection: Sorting Endometriosis from IBS, POTS, and MCAS With Dr. Zac Spiritos

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The Gut-Brain Connection: Sorting Endometriosis from IBS, POTS, and MCAS With Dr. Zac Spiritos
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A deep dive into the tangled web of GI symptoms and how they connect to endometriosis, EDS, POTS, and Mast Cell Activation Syndrome. Dr. Zac Spiritos, a neuro-gastroenterologist, shares insights on differentiating between these conditions and finding effective treatment approaches.

• IBS is a “software not hardware problem” involving miscommunication between gut and brain nerves
• Endometriosis can sensitize nerves in the pelvis, leading to IBS-like symptoms even after excision
• POTS affects the autonomic nervous system, causing standing tachycardia and various GI symptoms
• Mast Cell Activation Syndrome manifests through skin issues and unusual GI symptoms like early-onset heartburn
• EDS affects connective tissue throughout the body, potentially causing problems in every part of the GI tract
• Salt intake helps POTS patients by increasing blood volume, though this approach isn’t sustainable for everyone
• Finding a doctor who remains curious about complex conditions is crucial for proper diagnosis and treatment
• Patient education is essential for informed decision-making and long-term management of chronic conditions

Follow Dr. Zac Spiritos on Instagram @drzacspiritos

Support the show

Website endobattery.com

Instagram: EndoBattery

Is It Endo or Something Else?

Speaker 1
0:00

Is

it

your

gut

or

is

it

endo
?

Or

is

it

POTS
?

Or

maybe

it's

the

mast

cell

activation

throwing

a

party

that

you

didn't

invite

them

to
?

This

episode

dives

deep

into

the

tangled

webs

of

the

GI

system

and

how

it

connects

or

collides

with

endometriosis
,

eds
,

pots

and

mast

cell

activation
,

and

more
.

If

you've

ever

wondered

why

your

stomach

has

a

personality

all

its

own
,

this

one's

for

you
.

We're

sitting

down

with

Dr

Zach

Spears
,

host
,

just

to

learn

a

little

bit

more

about

this
.

Speaker 1
0:31

Stick

around
,

welcome

to

EndoBattery
,

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
.

This

is

EndoBattery

charging

our

lives

when

endometriosis

drains

us
.

Welcome

back

to

EndoBattery
.

Grab

your

cup

of

coffee

or

your

cup

of

tea

and

join

me

Meeting Dr. Zach Spiritos

Speaker 1
1:19

at

the

table
.

Speaker 1
1:19

Today
.

I'm

joined

by

my

guest
,

dr

Zachary

Spiritos
,

a

board-certified

neuro-gastroenterologist

with

a

passion

for

treating

irritable

bowel

syndrome
,

functional

abdominal

pain

and

mobility

disorders
.

A

Philadelphia

native
,

dr

Spiritos

graduated

from

Davidson

College

and

earned

his

MD

and

MPH

from

the

University

of

North

Carolina

at

Chapel

Hill
.

He

completed

his

internal

medicine

residency

at

Emory

and

went

on

to

complete

his

gastroenterology

fellowship

at

Duke
.

With

a

strong

background

in

teaching
,

research

and

patient-centered

care
,

he

brings

a

wealth

of

knowledge

and

compassion

to

the

table
.

Please

help

me

in

welcoming

Dr

Zach

Spiritos

to

the

table
.

Speaker 1
1:59

Thank

you
,

zach
.

So

much

for

sitting

down

with

me

today
.

I'm

really

excited

about

this

conversation

for

a

couple

reasons
.

So

much

for

sitting

down

with

me

today
.

I'm

really

excited

about

this

conversation

for

a

couple

reasons
.

First

reason

being

is

that

I've

never

had

a

GI

doctor

on

before
,

so

you're

the

first

that

has

raced

this

podcast
.

And

then
,

second
,

because

you

have

a

way

of

looking

at

not

only

the

whole

body

but

the

GI

system

and

how

it

all

correlates
,

and

this

is

something

that

many

of

us

face
,

so

I'm

excited

to

just

jump

in
.

Thank

you

for

taking

the

time

to

do

that
.

Speaker 2
2:32

This

is

some

big

shoes

to

fill
,

but

I

am

so

excited

to

get

into

this
.

I

certainly

have

a

lot

of

patients

with

comorbid

endometriosis

and

GI

conditions
.

Yeah
,

let's

mix

it

up

Understanding IBS & Neurogastroenterology

Speaker 2
2:47

and

GI

conditions
.

Speaker 1
2:47

Yeah
,

let's

mix

it

up
.

Yeah
,

I'm

excited

for

this
,

because

one

of

the

things

that

you

talk

about

a

lot

is

POTS
,

hypermobile

EDS
.

What

else

do

you

talk

about
?

Speaker 1
2:54

You

talk

about

a

lot

on

that

front
,

and

what

we

were

talking

about

a

little

bit

ago

is

that

there

is

a

correlation

between

those

and

endometriosis
.

For

some

reason
,

there's

a

lot

of

crossover

between

patients

who

have

endometriosis

and

have

all

of

these

other

things

that

they're

challenged

with
,

and

one

of

the

things

that

I

find

most

patients

struggle

with

is

their

GI

system
,

and

there's

a

lot

of

question

behind

why
.

Why

are

we

seeing

such

a

strong

correlation

between

all

of

these

symptoms

and

all

of

these

disorders

and

diseases

to

the

GI

system
?

Can

you

break

that

down

just

a

little

bit

for

us

in

what

you're

doing

and

how

we

can

look

at

our

GI

system

with

all

of

these
?

Speaker 2
3:40

That

is

a

loaded

question
,

goodness
,

okay
.

So

let's

start

with

irritable

bowel

syndrome
,

okay
,

because

I

see

it

a

lot
.

Comorbid

endometriosis

and

IBS
.

So

let's

talk

about

what

IBS

is
.

Okay
,

perfect
.

So

this

is

more

of

a

software

than

a

hardware

problem
.

Speaker 2
4:02

So

anybody

who

struggled

with

IBS

like

I

can't

make

it

through

dinner

without

running

to

the

bathroom
,

or
,

goodness
,

I

have

to

wait

like

six

hours

in

the

morning

to

get

my

business

done

before

I

can

start

my

day

knows

how

frustrating

IBS

is
.

And

what's

even

more

frustrating

is

that

when

they

have

endoscopies
,

imaging

tests
,

blood

work
,

everything

is

completely

normal
.

And

the

doc's

like
,

hey
,

great

news
,

you

don't

have

Crohn's

disease
,

it's

completely

normal
.

And

the

doc's

like
,

hey
,

great

news
,

you

don't

have

Crohn's

disease
,

you

don't

have

cancer
.

Really
,

this

is

probably

just

IBS
,

like

just

IBS
.

What

are

you

nuts

Like
?

This

is

horrible
,

and

not

having

any

diagnostic

tests

to

substantiate

your

symptoms

is

really

frustrating
,

okay
.

So
,

again
,

it

is

a

software

problem
,

not

a

hardware

problem
.

Speaker 2
4:40

And

if

we

were

to

identify

one

specific

part

of

the

body

that

is

quote
,

unquote

off

an

IBS
,

it

is

the

nerves
.

Okay
,

so

the

nerves

that

are

delivering

signals

between

the

brain

and

the

gut
.

So

it's

where
?

So

in

this

kind

of

misfiring

crosstalk
.

The

gut

is

sending

pain

signals

to

the

brain

Because

IBS

one

of

the

cardinal

features

is

pain

and

that

causes

stress

and

anxiety

on

the

brain
.

And

if

we

were

to

kind

of

give

this

a

more

scientific
,

pathophysiologic

name
,

it'd

be

an

overactive

sympathetic

system
,

which

is

your

fight

or

flight

system
,

which

is

contrasted

by

the

parasympathetic

system
,

which

is

your

rest

and

digest

system
,

which
,

if

you

want

to

be

pooping

better
,

rest

and

digest

is

kind

of

where

we

want

to

live
.

And

IBS

folks

tend

to

live

in

the

sympathetic

overdrive

so

that

those

pain

signals

get

sent

to

the

brain
.

And

then

the

brain
,

believe

it

or

not
,

has

a

big

role

in

how

our

GI

system

moves

and

coordinates
.

And

when

the

brain

is

then

shifted

into

the

sympathetic

overdrive

it

can

lead

misspeaking
.

Just

be

like

that's

so

wrong
,

just

stop

right

there
.

Speaker 2
6:08

But

you

know
,

these

endo

implants

by

nature

cause

local

inflammation

in

the

pelvis
.

Okay
,

and

what

does

local

inflammation

do
?

It

causes

substantial

hypersensitivity

of

these

nerves
.

That

is

the

link

between

endometriosis

and

IBS

is

really

sensitizing

these

nerves

of

the

gut

and

the

pelvis

and

which

then

lead

to

more

stress

on

the

brain
,

a

highly

active

sympathetic

system

which

in

turn

can

lead

to

diarrhea
,

constipation

and

all

the

really

intrusive
,

challenging

symptoms

of

the

illness
.

I

think

that's

a

good

place

to

start
.

Speaker 2
6:44

But

that's

why

we

see

a

lot

of

IBS

in

folks

who

have

endometriosis
.

And

even

when

you

treat

the

end

of

disease
,

sometimes

they

have

persistent

IBS

afterwards

because

all

of

that

chronic

inflammation

really

leads

to

a

lot

of

pain

over

time

in

the

brain
.

We

know

that

if

someone

has

chronic

pain

from

a

certain

part

of

their

body

and

the

brain

continues

to

receive

these

signals

of

pain
,

eventually

that

pain

signal

starts

coming

from

the

brain

itself

as

opposed

to

the

organ

anymore
.

So

if

you

were

to

take

out

so

say
,

for

example
,

that

pain

is

coming

from

your

pelvis
,

right

From

endometriosis
,

and

then

you

take

those

implants

out

or

you

put

some

on

a

contraceptive

and

now

I'm

kind

of

speaking

out

of

pocket

because

I

do

not

know

how

to

treat

endometriosis
.

But

if

that

pain

fires

over

and

over

and

over

again

and

then

you

remove

the

inciting

issue
,

if

that

pain

happened

for

such

a

long

period

of

time
,

the

brain

will

start

creating

those

pain

signals

by

itself
.

Speaker 1
7:41

Right
.

Speaker 2
7:42

And

that's

where

it's

just

chronic

pain
,

nerve

sensitization
,

bowel

dysfunction
,

and

that's

how

it's

all

kind

of

linked

together
.

Speaker 1
7:51

The

POTS

EDS

conversation

is

different

altogether

and

we

can

certainly

jump

into

that

too
,

which

is

where

I

kind

of

want

to

jump

into
,

because

this

is

kind

of

where

you

have

identified

a

lot

of

chronic

pain

issues

with

the

GI

and

how

it's

all

connected
,

and

I

think

something

that

many

of

us

struggle

with

is

the

fact

that

we

don't

have

just

endometriosis
,

we

have

all

of

these

other

things
,

myself

included
,

that

we

find

a

challenge

with

sifting

through

the

symptoms

and

the

diagnosis

and

everything

else

and

how

they

all

correlate

and

how

they

correspond

together
.

How

is

it

for

you

Because

you

do

a

lot

of

the

POTS

and

EDS

and

stuff

like

that

Beyond

the

endometriosis
,

a

lot

of

us

have

good

excision
.

We

don't

have

the

pain

from

the

endometriosis

anymore
,

and

you

kind

of

alluded

to

the

fact

that

you

know

there's

still

some

of

that

inflammation
.

However

POTS, EDS & Mast Cell Activation

Speaker 1
8:43

,

I'm

going

to

caveat

this

by

saying

is

it

that

or

is

it

some

of

these

other

coinciding

conditions
,

and

how

do

you

differentiate

that
?

Speaker 2
8:51

That's

a

really

good

question
.

So

you

know
,

the

patient

narrative

obviously

informs

a

lot

of

this
.

What's

really

challenging

in

these

chronic

invisible

conditions

is

that

testing

just

doesn't

do

service

to

what's

going

on
.

And

so

you

know
,

if

someone

said
,

you

know

I've

been

dealing

with

endometriosis
,

you

know

since

forever

pelvic

pain
,

you

know

dysmenorrhea
,

you

know

dyspareunia

and

and

part

of

our

job

as

a

physician

is

to

take

a

complete

review

of

systems

like

head

to

toe
.

So

how

are

your

bowel

movements
?

Do

you

have

constipation
,

do

you

have

diarrhea
,

do

you

have

bloating
?

And

then

the

chronology

is

a

big

part

of

this
.

So

it's

like

what

started

first
?

And

then

you

can

start

building

the

narrative

Did

endometriosis

lead

to

IBS
,

or

perhaps

is

it

just

endometriosis
?

Speaker 2
9:43

So

I'm

kind

of

painting

this

with

a

broad

brush
.

But

if

someone

says
,

hey
,

my

IBS

symptoms

really

rev

up

during

my

cycle
,

then

I'm

like

perhaps

this

is

all

endometriosis
.

But

if

someone's

like

I

have

endometriosis

but

then

I

have

IBS

just

going

on

a

day-to-day

basis
,

then

perhaps

it's

endometriosis

leading

to

IBS
.

And

then

on

top

of

that

there's

like

the

anxiety

and

stress

component

of

things

which

make

everything

worse
.

And

no
,

anxiety

and

stress

are

do

not

cause

IBS
.

They

make

it

worse
,

certainly
,

but

one

can

imagine

like

who's

not

stressed

out

or

incredibly

anxious

if

they

can't

figure

out
,

like

they

can't

go

to

the

dinner

without

running

to

the

bathroom

or

identifying

you

know

where

all

the

restrooms

are
,

like

it's

incredibly

anxiety

provoking

and

so

it

behooves

us

to

kind

of

touch

on

that

as

well
.

So

I

guess

it's

a

long

way

of

saying
.

Speaker 2
10:33

You

kind

of

have

to

listen

to

the

story

and

see

what

started

first
,

Right
.

So

if

someone

said

I've

had

end

of

disease

for

a

while

and

then

all

of

a

sudden
,

goodness
,

like

my

heart

races

when

I

get

up
,

tell

me

more

about

that
,

right
.

But

unfortunately
,

you

know
,

in

today's

healthcare

we

kind

of

have

docs
,

have

like

a

finite

period

of

time

with

patients
.

Right
,

they

have

30

minutes
.

It's

very

important

to

shoot
.

Okay
,

if

diarrhea

boom
,

like

what

kind

of

diarrhea
?

Later

you

kind

of

put

you

on
,

kind

of

run

a

few

tests
,

but
,

truth

be

told
,

there's

crosstalk

between

your

GI

system

and
,

like

any

OBGYN

issues

going

on
,

your

on

any

psychiatric

kind

of

disease

in

the

background
,

insomnia
,

and

so

it's

all

kind

of

plays

off

each

other
.

And

so

what

I

do

is

I

kind

of

what's

the

biggest

symptom

that

bothers

you

today

and

let's

really

drill

into

it

and

get

to

when

it

started
,

how

it

started

and

what

are

precipitating

things

stress
,

anxiety
,

food

to

really

get

it

to

why

it's

there

to

begin

with
.

Speaker 1
11:24

Talk

to

us

a

little

bit

about

what

you

see

in

symptoms

with

your

hypermobile

EDS

people

and

your

POTS

people
,

and

are

you

seeing

like

the

MCAS

people

Because

that's

a

big

part

of

a

lot

of

our

history

as

well
,

amongst

a

slew

of

other

things
,

of

course

but

what

are

the

things

that

you

see

most

in

those

patients
?

Because

I

bet

you
,

if

we

could

sit

down

and

identify
,

okay
,

these

are

some

of

our

symptoms

too
.

Here's

maybe

some

ways

we

can

address

that
.

What

do

you

typically

see

in

those

three

subsets

of

patients
?

Speaker 2
12:00

Yeah
,

so

they

land

in

my

lap
.

So

I'm

a

neurogastroenterologist
,

so

I

stole

this

from

this

amazingly

smart

doctor
,

dr

Brandler
,

who's

a

neurogastroenterologist

up

in

Seattle
,

and

it's
,

we

are

electricians
,

not

plumbers
,

okay
.

And

so

when

patients

come

to

me

they

have

GI

symptoms
,

but

then

they

start

talking

about

other

things

that

don't

necessarily

fit

into

IBS
.

So

I

initially
,

when

I

first

graduated

and

I

was

in

practice
,

I

took

on

a

lot

of

IBS

patients
.

I

just

happened

to

love

taking

care

of

that

patient
.

Speaker 2
12:31

But

then

someone

would

say

you

don't

have

IBS
.

But

all

of

a

sudden

when

I

get

up
,

my

heart

just

races
.

Like

that's

not

IBS
.

I

think

an

antiquated

view

of

that

is

like
,

oh
,

you're

stressed

and

stress

causes

anxiety

and

stress

causes

palpitations
.

But

this

is

different
.

Speaker 2
12:46

So

in

POTS

the

hallmark

feature

is

standing

up

and

just

feeling

like

your

heart

is

racing
.

Okay
,

and

with

that

I

would

say

that

brain

fog

is

a

really

big

symptom

there
.

And

then

kind

of

secondarily
,

you

know
,

some

people

get

a

lot

of

blood

pooling

in

their

feet
,

like

their

feet

get

swollen
.

But

yeah
,

certainly

the

standing

tachycardia
,

or

the

heart

racing

from

going

or

sitting

to

a

standing

position
,

is

the

hallmark

features

of

postural

orthostatic

tachycardia

syndrome
.

But

they

also

may

have

a

lot

of

GI

symptoms

getting

full
,

early
,

tons

of

bloating
,

loose

stools
,

conversely

constipation
.

So

the

POTS

GI

system

doesn't

really

follow

any

specific

rulebook
.

Speaker 2
13:25

Yeah
,

okay
,

so

mast

cell

activation

syndrome

is

and

of

course

this

can

be

linked

with

POTS

too
.

So

when

I'm

talking

to

one

of

these

patients

I'm

asking

all

these

questions
,

I'm

screening

for

every

one

of

these

things

to

see

if

we

can

kind

of

piece

this

together
.

But

the

hallmark

feature

of

mast

cell

activation

syndrome

is

probably

skin

manifestations
,

so

itching
,

rashes
,

secondarily

kind

of

ears
,

nose

and

throat

issues
,

rhinorrhea
,

eyes

watering

for

like

no

good

reason
.

And

then

GI

symptoms

are

kind

of

probably

coming

third

there
,

and

that's

bloating
,

diarrhea
,

lots

of

heartburn

and

someone

who

like

shouldn't

get

heartburn
.

You

know
,

heartburn

traditionally

affects

people

who

are
,

you

know
,

a

little

bit
,

a

little

bit

older
,

have

their

BMIs
,

are

probably

closer

to

30
.

Speaker 2
14:11

We

see

these

young

women

who

are

22
,

23
,

with

rip-roaring

heartburn
.

I'm

like

that

ain't

good
,

it

just

doesn't

make

any

sense
.

And

that's

MCAS
.

So

that's

where
.

So

just

one

of

the
,

without

getting

too

into

the

nittyitty

gritty

of

the

pathophysiology

of

MCAS
.

But

these

mast

cells

are

just

very

twitchy
.

They're

intended

to

be

selectively

defensive

against

certain

pathogens

that

our

body

doesn't

like
.

You

know

mold

if

anybody's

in

North

Carolina

like

me
.

Just

the

pollen

is

insane
,

so

mast

cells

are

supposed

to

be

acting

up

now

is

insane
,

so

muscles

are

supposed

to

be

acting

up

now
,

but

these

muscles

become

twitchy

and

react

to

virtually

everything
,

from

temperature

changes

to

emotional

changes
,

to

poor

sleep
,

to

medications
.

It's

really

wild
.

Speaker 2
14:52

And

one

of

the

chemicals

that

it

releases

and

it

releases

hundreds

of

chemicals-

is

histamine
,

and

histamine

plays

a

big

role

in

creating

acid

secretion

from

the

stomach

which

could

lead

to

heartburn

symptoms
.

But

for

all

intents

and

purposes
,

patients

don't

behave

like

traditional

gastroesophageal

reflux

patients
.

They

don't

respond

to

proton

pump

inhibitors

and

they

have

no

darn

reason

to

have

reflux

to

begin

with
,

right
,

they

don't

have

a

big

hiatal

hernia
,

which

is

a

traditional

risk

factor

for

heart

reflux
,

or

they're

not

overweight
,

and

so

that's

where

you

have

to

start
.

This

doesn't

quite

make

sense
,

okay
,

and

you

said

EDS
.

Speaker 1
15:27

EDS
,

this

is

a

big

one

for

us
,

okay
,

I
?

Speaker 2
15:29

have

a

lot

of

questions

for

this

one
.

So

again
,

I'm

a

GI

doctor
,

so

I

deal

with

a

lot

of

the

GI

manifestations
.

Speaker 1
15:36

Right
.

Speaker 2
15:36

But

they

certainly

screen

for

all

of

you

know
,

all

my

patients

who

I

you

know
,

who

have

MCAS
,

who

have

POTS
,

for

EDS-specific

symptoms
.

Speaker 2
15:44

And

the

Bait

and

Score

is

really

nice
,

testing

certain

joint

mobile

hyperflexibility
,

being

able

to

put

both

palms

on

the

floor

with

extended

knees
,

or

able

to

bend

your

pinky

back

beyond

a

certain

angle
.

You'd

be

able

to

bend

your

thumb

beyond

a

certain

angle
,

and

you

can

look

up

the

Bait

and

Score

and

kind

of

assess

for

yourself
.

But

did

you

have

kind

of

weird

random

joint

subluxations

as

a

kid
?

Did

your

knee

just

pop

out

of

joint
,

like

that's

not

supposed

to

happen
,

and

they're

like

oh

yeah
,

we

put

a

brace

on

it

and

kind

of

said

that

was

fine
.

I

was

like

that's

not

fine
,

reasonable
,

but

just

like
,

yeah
,

I

was

playing

kickball

and

my

knee

just

popped

out

of

place
,

like

that's

not

a

thing
,

right
.

So
,

in

a

nutshell
,

like

a

very

condensed
,

oversimplified

way

of

kind

of
,

I

think
,

compartmentalizing

those

conditions
.

So

it's

really

important
,

you

know
,

to

really

do

a

thorough

review

of

systems

and

ask

all

the

questions

so

you

can

really

understand

why

something
.

Speaker 1
16:44

And

so

and

I

yeah
,

and

it's

so

true

because

I

think

you

know

we

had

kind

of

talked

previously

to

this

about

providers

being

curious
,

right
,

like

we
.

We

need

to

be

able

to

seek

a

provider

who

is

curious

if

we

have

all

of

these

symptoms
,

because

I

feel

like

a

lot

of

us
,

especially

for

endometriosis

patients
,

we

go

in

primarily

with

IBS
.

We

get

diagnosed

with

that

time

and

time

again
.

It's

not

IBS
.

A

lot

of

times

it

tends

to

go

away

after

excision

surgery

or

it

lessens

at

least

where

we

can

eat

things

again
.

Speaker 1
17:21

Food

sensitivity

is

a

huge

thing

for

endometriosis

patients

and

histamine

response

to

all

of

these

things
.

Speaker 1
17:30

You

know

we're

seeing

such

a

correlation

between

all

of

this

stuff
,

and

a

lot

of

it

again

is

because

there

can

be

lesions

on

your

bowel

and

that's

something

that

happens

quite

often
.

Speaker 1
17:42

And

you

know

our

pelvis

is

you

think

about

it

and

we're

just

all

this

collective

little

unit

of

organs

right
,

and

they're

all

in

there

together

in

this

inflammatory

state
.

And

so

once

we

get

that

taken

care

of
,

a

lot

of

times

it

becomes

tricky

because

most

of

us

don't

realize

we're

living

with

these

other

signs

and

symptoms

of

these

other

conditions

until

we

get

proper

excision

and

we're

not

having

the

pain

from

endometriosis

anymore
,

and

so

to

me

hearing

you

talk

about

all

of

this
,

interestingly

enough
,

they

all

constipation
,

diarrhea
,

bloating
,

brain

fog
,

fatigue
,

similar

to

endometriosis

and

this

is

something

that

I

didn't

identify

until

after

my

excision

as

well

is

that

I

had

all

these

other

things

going

on
.

It

wasn't

just

one

or

the

other
,

but

something

that

a

lot

of

patients

have

learned
,

and

that
,

something

that

I'm

learning
,

is

that

within

the

EDS

space
,

the

laxity

in

tissues

creates

a

lot

of

issues

with

vascular

issues

and

otherwise
.

How

does

that

correlate

into

the

GI

field
?

Speaker 2
18:48

Yeah
,

that's

a

really

good

question
.

So

EDS

is

a

nuisance

Goodness
.

So

unfortunately

it

is

a

condition

sometimes

inherited
,

sometimes

not

that

affects

the

connective

tissue

and

connective

tissue

is

ubiquitous
,

it's

everywhere
,

it

affects

every

part

of

the

GI

tract
,

unfortunately
,

and

it

doesn't

play

by

any

specific

rule
.

So

somebody

may

have

upper

gi

symptoms

because

they

developed

a

hiatal

hernia

at

a

very

early

age
.

The

diaphragm

is

intended

to

hold

down

our

lower

esophageal

sphincter

to

prevent

gastric

contents

from

coming

up

into

our

esophagus
.

But

the

ligament

that

holds

the

diaphragm

to

lower

esophageal

sphincter

can

become

a

little

bit

loose

and

lax

in

the

context

of

an

eds

and

then

they

can

develop

a

little

hernia

there

which

leads

to

a

rip-roaring

gastroesophageal

reflex

disease
.

The

connective

tissue

in

our

esophagus

can

be

affected
,

leading

to

dysphagia

or

difficulty

swallowing

and

then

working

all

the

way

down
.

Perhaps

it

affects

your

small

bowel
.

To

where

your

small

bowel

doesn't

empty

very

well
,

you

develop

small

intestinal

bacterial

overgrowth

and

then

your

colon

right

you

can

develop

constipation
,

because

it's

just

your

constipation

isn't

as

moving

as

well
.

And

then

there

is

something

called

visceroptosis

which

is

challenging
.

But

our

organs

are

supposed

to

be

supported

by

connective

tissue

but

it's

not

working
.

It

sags

and

our

intestines
,

our

small

bowel

can

sag

into

our

pelvis

and

lead

to

obstructive

symptoms

in

our

colon
,

and

so

it

can

be
.

Speaker 2
20:16

You

just

have

to

keep

an

open

mind

to

someone

with

EDS
,

because

they

can

develop

everything
.

And

so

the

traditional

thinking

in

medicine

is

when

you

have

this

differential

diagnosis

of

what

you

think

may

be

going

on
,

based

on

a

patient's

presentation
.

But
,

quite

frankly
,

they

can

have

like

everything
.

You

just

have

to

keep

an

open

mind

and

you

try

one

thing
.

And

I

always

tell

patients

like
,

look
,

this

is

super

complex
,

this

is

not

like

a

pneumonia
.

I

give

you

amoxicillin
.

10

days

later

you're

able

to
,

like

you

know
,

walk

up

the

stairs

again

and

you'll

be

a

hundred

percent

better
.

Speaker 2
20:44

We're

looking

for

incremental

changes

because

these

are

really

tough
.

And

so

I
,

in

my

practice
,

we

will

try

something
.

Get

In

my

practice
,

we

will

try

something
,

get

some

diagnostic

information

and

I'll

say
,

look
,

I'm

looking

for

30%

improvement

by

next

year
.

And

if

we

misfire
,

then

I

looked

in

the

wrong

place

and

that's

on

me

and

I'm

sorry
,

but

this

is

tough

right
.

And

so

we

get

more

data

and

try

to

figure

it

out
.

But

you

just

have

to

keep

such

an

open

mind

and

understand

how

EDS

can

affect

people
.

And
,

quite

frankly
,

it

could

be

like

anything

and

then

forget
,

like

you

know
,

the

vascular

compression

symptoms

like

immediate

arcoteligament

syndrome

or

SMA

syndrome
,

which

are

incredibly

unique

in

the

general

population
.

But

if

you

have

EDS

and

this

is

why

you

have

to

screen

people

for

joint

laxity

in

clinic
,

because

it

expands

the

differential

to

all

this

weird

stuff

that
,

truth

be

told
,

you

never

see

unless

you

look

for

it
,

and

so

it

can

get

quite

challenging
.

Speaker 1
21:36

Yes
,

I

mean

this

is

a

lot

of

us

struggle

with

this
.

Now

we're

seeing

May-Thurner

and

Nutcracker

syndrome

being

all

in

correlation

with

it
.

It's

a

lot
,

right
,

indo

patients
.

We're

professional

patients
,

unfortunately
,

and

that's

it's
.

We're

professional

patients
,

unfortunately
,

and

that's

EDS Impact on the GI System

Speaker 1
21:57

that's

hard

for

a

lot

of

us
,

right
,

cause

we

give

so

much

to

our

care

and

trying

to

find

a

solution

to

a

problem
,

and

when

it's

not

a

an

easy

solution
,

it

gets

hard

and

and

so

I

love

that

you

have

you

don't

put

everything

on

the

patient
,

that

the

patient
.

We

are

all

research

projects
,

essentially
,

and

we

should

be
.

And

I

say

that

because

if

you

were

to

put

us

all

in

a

box
,

you

would

miss

a

lot

of

diagnoses
,

you

would

miss

half

of

our

care

if

you

put

everyone

in

the

same

box
,

right
.

So

I

love

that

you

don't

do

that
,

because

we

are

all

so

unique

in

our

symptoms
.

But

how

do

you

address

these

symptoms
?

How

do

you

address

the

EDS

patients

who

are

struggling
?

How

do

you

address

those

who

have

MCAS

or

POTS

when

it

comes

to

the

GI

stuff
?

Speaker 2
22:50

Yeah
,

so

it

starts

with

certainly

an

interview

to

understand

what's

the

biggest

thing

that

bothers

you
.

Okay
,

so

if

it's

harper

and

they

are

happen

to

be

a

22

year

old
,

like

otherwise

healthy

person
,

I

would

no

reason

to

have

harper
.

I'm

like
,

all

right
,

well
,

let's
,

if

we

treat

the

mcas
,

the

harper
,

and

we'll

get

better

and

you

can

treat

them

with

like

Pepsid
,

over-the-counter

H1

blockers
.

But

it

sounds

like

I'm

really

bloated

like

all

the

time
.

Okay
,

well
,

and

you're

thinking

about
,

if

someone

has

endometriosis

or

EDS

and

POTS
,

then

you

got

to

start

thinking

about

is

this

gastroparesis
?

Is

this

small

intestinal

bacterial

overgrowth
?

So
,

truthfully
,

the

presenting

symptom

and

you

don't

want

to

discard

the

ancillary

symptoms

I

can't

sleep

the

brain

fog

but

the

presenting

symptoms

like

what

is

the

biggest

thing

that

bothers

you

today

Should

drive

the

discussion

and

where

you

go
.

So

is

it

I

get

full

right

after

eating
,

or
,

goodness
,

I

have

just

horrible

heartburn

that

keeps

me

up

all

night
,

or

I

haven't

pooped

in

like

13

days
,

or
,

conversely
,

I

can't

stay

off

the

toilet
.

So

that

informs

kind

of

where

we

start

the

investigation
.

Because
,

as

you

mentioned
,

so

in

POTS
,

right
,

the

underlying

issue

to

POTS
.

So

POTS

is

a

syndrome
.

Right
,

it's

just

a

constellation

of

symptoms
,

but

the

issue

underlying

it

is

dysautonomia
.

So

dysautonomia

is

the

nervous

system

that

does

everything

in

our

body

right
.

It

affects

our

cardiovascular

system
,

how

fast

our

heart

should

beat

or

shouldn't

beat
.

It

helps

with

vasoconstriction

to

kind

of

help

get

blood

back

to

our

brain

and

our

heart

Also
,

unfortunately
,

is

really

important

in

digestion
.

It

helps

things

move

and

coordinate

and

squeeze
,

but

it

doesn't

affect

the

same
.

Speaker 2
24:32

If

you

have

two

patients

with

POTS
,

it

can

be

so

completely

different

one

person

versus

the

other
,

and

so

as

a

provider
,

you

have

to

be

aware

of

all

the

sequelae

of

POTS

in

patients

from

a

GI

perspective

to

know

where

to

target

your

efforts
.

And

it's

really

important

to

be

informed

as

a

patient

too
,

and

hopefully

you

have

a

provider

that

will

listen

to

you
.

If

you

say
,

hey
,

you

know

I

have

POTS
,

goodness
,

and

I

know

that

in

POTS

patients

they

can

develop

these

GI

symptoms

and

I

have

bloating
,

like

could

it

be

one

of

these
?

And

if

you

don't

know
,

can

you

send

me

to

someone

who

does
?

And

if

you

say

it's

anxiety

in

my

head
,

I'm

going

to

give

you

a

horrible

Yelp

review

and

I'll

leave

here

immediately
.

Don't

do

that
.

Speaker 2
25:12

I

mean
,

I

do

think
,

generally

speaking
,

doctors

are

really

trying

to

do
.

I

give

doctors

the

benefit

of

the

doubt

and

I

know

people

have

had

horrible

experiences
.

I

can't

endorse

everything

people

have

said

or

done
,

because

there

have

been

some

things

out

there

that

are

certainly

uncalled

for
,

unreasonable
,

but

there

are
.

As

someone

who

is

in

the

system

right

now
,

you

don't

have

a

lot

of

time

with

patients
,

yeah
,

and

it's

someone

who's

medically

very

complex
.

You're

just
.

You

know
,

if

you

have
,

you've

been

treating

one

thing

the

same

way

your

whole

life
,

and

then

someone

comes

in

with

something

you

just

don't

know

how

to

address
.

You

don't

as

the

expert
.

You

don't

want

to

say

you

don't

know
.

Speaker 1
25:48

Right
,

Like

I

get

that
.

Speaker 2
25:49

Is

it

okay

to

say

it's

all

in

your

head
?

It

is

not
.

But

a

lot

of

doctors

have

a

tough

time

saying

I

don't

know
,

and

perhaps

let

me

do

some

research

to

figure

out

what

this

is
.

A

lot

of

people

are

kind

of

anchored

to

what

they've

always

known

and

always

believed
,

and

that's

where

the

disconnect

happens
.

And

so
,

as

we

talked

about

before
,

patients

are

incredibly

curious
,

but

doctors

need

to

be

incredibly

curious
.

Like

things

change
,

things

don't

fit

in

the

box

all

the

time
,

and

if

it

doesn't

fit

in

the

box
,

it's

not

okay

to

say

it's

in

someone's

head
.

It's

not

okay

to

dismiss

anybody
,

but

perhaps

try

to

do

some

research
.

Speaker 1
26:21

Right

With

pots

alone
.

They

always

say

high

intake

of

salt

is

what's

ideal
,

and

I

can

tell

you
,

as

someone

who

has

pots

salt

can

be

great
,

but

I

also

have

a

kidney

disorder
,

so

I

always

feel

like

this

catch-22
,

right
,

let's

just

pile

on

my

little

onion
,

you

know
.

And

so

is

that

a

long-term

solution

for

POTS
,

though
,

or

are

there

other

ways

to

manage

symptoms

from
,

specifically
,

probably

more

the

GI

for

what

you're

used

to
?

But

are

there

ways

to

manage

those

symptoms

other

than

atrocious

amount

of

salt

and

sodium
?

Speaker 2
26:56

Can

I

throw

something

back

at

you
?

Speaker 1
26:58

Please

do
.

Speaker 2
26:59

Why

were

you

told

to

eat

a

lot

of

salt
?

Speaker 1
27:02

That's

a

really

good

question
.

I

don't

know
.

Speaker 2
27:05

Right
,

and

so

this

is

why
,

when

I

talk

about

recommendations

to

patients
,

I'm

like

you're

going

to

do

this
.

But

this

is

why

you

need

to

do

this

and

this

is

what

it's

going

to

work

for
,

because

if

it's

not

working
,

let's

counter

that

with

something

else
.

So

the

salt

intake

doesn't

necessarily

improve

a

whole

lot

of

GI

related

conditions
,

but

the

reason

why
?

So

not

all

pots

is

created

equal
.

But

generally

speaking
,

you

know
,

when

you

stand

up
,

there's

a

tremendous

shift

in

blood
.

So

when

you're

sitting

down
,

blood

pools

in

your

feet
.

Speaker 2
27:38

Okay
,

when

you

stand

up
,

there's

a

lot

of

things

that

have

to

work

perfectly

in

concert

to

get

that

blood

back

to

your

heart

and

back

to

your

brain

so

you

don't

hit

the

floor

and

so

your

heart

doesn't

race

because

it

receives

adequate

blood

volume
.

So

in

dysautonomia

and

POTS
,

blood

takes

quite

a

while

to

get

back

to

your

heart
.

So

your

heart's

like

Managing POTS & Achieving Long-term Relief

Speaker 2
27:50

,

oh
,

my

goodness
,

I'm

standing

up
.

I

got

to

make

sure

the

brain

is

okay
.

So

it

starts

really
,

really

beating

quite

a

bit

to

really

increase

that

stroke

volume

and

get

the

blood

to

your

brain
.

So

we

know

that

patients

with

POTS

have

a

difficult

time

shifting

that

blood

up

to

their

brain
,

but

we

also

know

that

patients

with

POTS

have

less

blood

volume

than

the

average

person
.

Their

kidneys

just

dump

volume

unnecessarily
,

and

that's

kind

of

a

different

conversation

in

and

of

itself
.

So

you're

playing

from

behind

from

two

perspectives
.

There's

a

discoordination

in

the

veins

and

the

arteries

veins

primarily
,

but

there's

also

a

massive
.

You

have

less

blood

circulating
,

and

so

what

salt

does

is

it

retains

blood

within

your

vasculature
.

Okay
,

and

so

by

increasing

your

blood

volume
,

you're

getting

more

blood

back

to

your

heart
.

So

you're

not

really

dealing

with

the

tachycardia

because

it's

seeing

more

volume
.

Speaker 2
28:38

So
,

yes
,

eating

six

to

eight

grams

of

salt

today

is

really

challenging
,

and

patients

like

this

sounds

impossible

like

this
.

This

is

ridiculous
.

I

can't

lick

a

salt

block

all

day

right
,

so

that's

not

working
.

You

know
,

and

I

always

work

on

the

lifestyle

pieces

first
.

So

compression

stockings
,

preferably

up

to

the

waist
,

if

you

can

tolerate

that
,

right
,

drinking

two

to

three

liters

of

water

a

day

and

a

lot

of

that
,

you

know

if

you

can
,

half

of

that

being

electrolyte

drinks
,

gatorade

Powerade
.

There's

a

quite

a

bit

of

sugar

content

in

there
,

and

there

are

great

recipes

online

for

making

your

own

kind

of

super

high

sodium

electrolyte

drink

that

are

laden

with

glucose
.

And

then

sometimes
,

if

we

need

to
,

we

use

medications
.

Speaker 2
29:17

Okay

so

there

are

medications

to

help

the

veins

squeeze

there's

something

called

Midodrine
,

and

there's

also

medications

to

increase

your

blood

volume
,

called

Florina

for

flugacortisone
.

Both

of

those

have

potential

side

effects
,

so

you're

always

weighing

the

risks

and

the

benefits
,

but

everybody's

case

is

completely

different
.

So

some

people

are

eating

a

bunch

of

salt
,

drinking

a

bunch

of

water
,

and

they

feel

fantastic
,

and

some

people

are

like

this

is

just

not

cutting

it
,

like

my

heart

is

beating

out

of

my

freaking

chest
.

This

is

brutal
,

and

you're

like

oh

well
,

maybe

it's

time

to

talk

about

medications
.

And

so

everybody's

approach

is

a

bit

different
.

Speaker 1
29:47

Yeah
,

I

just

feel

like

it's

like

is

this

sustainable

to

feel

like

you're

constantly

with

salt
?

I'm

like

this

can't

be

healthy
,

but

then

it's

a

catch-22
,

right
,

because

you

have

something

that

benefits

from

doing

it
,

but

you're

also

it

is

a

catch-22
,

I

think
,

for

a

lot

of

people

who

are

feeling

like

do

I

have

to

do

this

my

entire

life
?

Speaker 2
30:07

Right
,

right
,

but

I

think

if

you

know

why

you're

doing

it

no-transcript

of

counters

it

goes

back

to

just

good

communication

between

the

care

team

and

the

patient
.

Speaker 1
30:45

Yeah
,

well
,

and

I

think

too
.

I

mean
,

we've

talked

a

lot

about

the

care

and

the

patient
,

but

then

let's

also

say

patients

do

need

to

be

held

accountable

to

follow

practices

which

we're

not

always

good

at
.

I'm

an

ADHDer

over

here
.

I

can

do

things

for

about

0.2

seconds

before

I

get

a

little

bored

and

I

don't

want

to

do

it

anymore
.

So

we

have

to
.

How

do

we

accommodate

those

patients

a

little

bit

better
?

The

reality

is
,

is

that

if

we

are

living

with

these

conditions

long-term

our

whole

life
,

we

have

to

learn

how

to

live

with

it
.

Well
,

right
,

what

are

some

approaches

that

you

take

with

patients

to

help

that

maybe

psychosomatic

aspect

of

it
,

which

I

hate

that

word

psychosomatic

why

do

we

call

it
?

Speaker 2
31:32

It's

so

pejorative
,

so

pejorative
.

Yeah
,

I

emphasize

education

a

lot
,

so

I'm

always

I'm

recommending

books

to

patients

so

they

can

understand

why

POTS

happens
,

because

when

you're

doing

something
,

I

want

you

to

know

exactly

why

you're

doing

that
,

because

this

is

a

team

effort
.

This

ain't

on

me
,

this

ain't

on

you
,

this

is

us

working

together

to

figure

this

out
.

So

I

don't

put

it's

not

my

job

to

fix

you
.

I'm

your

guide
,

it's

kind

of

your

job
,

but

I'm

here

to

like
,

I'm

here

to

help
,

but

you

can't

do

your

job

in

getting

better
,

like

you

shouldn't

rely

on

doctors
.

You

shouldn't
,

because

this

is

your

life

Like
,

and

doctors

are

just

people

Like

we

just

read

a

bunch
,

bunch
,

that's

all

we

did

and

took

some

tests
,

that's

it
.

And

so

I

really

try

to

educate

people

a

ton

so

they

know

exactly

why

they're

doing

this
.

And

I

recommend

books

for

patients

with

IBS
,

for

POTS

patients
.

Speaker 2
32:21

I

have

a

different

set

of

books

For

EDS
,

different

set

of

books
,

mcas

different

set

of

books

so

you

can

understand

not

only

the

pathophysiology

of

what's

going

on
.

I'm

like
,

look
,

you

don't

need

to

read
,

you

know

Grey's

Anatomy

or

something

like

wildly

boring
.

Patient

experience

books

are

pretty

awesome

because

they

can

tell

you

what

they

did
.

Maybe
,

again
,

they

didn't
.

What

they

did

isn't

going

to

work

for

you
,

but

there

are

stories

of

hope

that

someone

who

came

from

really

they

came

from

behind

and

really

have

figured

this

thing

out

and

their
,

their

journey

is

not

going

to

be

the

same

as

yours
,

but

it

gives

you

a

basis

for

understanding

why

the

disease

processes
,

how

other

people

got

better
.

The

fact

that

you

can

get

better

is

a

reality
.

That

is

out

there
.

Yeah
,

I

think

it's

a

long

way

to

say

it's

like
.

I

really

try

to

educate

people

and

I

give

them

a

lot

of

materials

to

go

home

and

some

people

throw

it

in

the

trash
.

I

get

that
.

I

get

it

and

I

don't

give

people

quizzes

when

they

come

back

in
.

Speaker 2
33:09

Although

maybe

they

should

you

failed
,

see

you

later
.

No
,

I

mean
,

it's

a

team

effort
,

man
.

It's

a

team

effort

and

we

work

on

it

together
,

and

that's

my
.

I've

always

thought

of

it

as

that

way
.

It's

a

partnership

about

informed

consent
.

Speaker 1
33:32

You

can't

make

an

informed

decision

if

you

don't

have

all

the

education

behind

it
,

and

that

is

something

that

I

think

a

lot

of

us

lack

in

our

decision

making

is

that

informed

consent
.

The

provider

shouldn't

be

making

that

decision
,

but

they

can

give

you

the

information

to

make

the

best

decision

for

your

care
.

And

so

I

think

there's

that

aspect

of

taking

responsibility

for

those

decisions

too

and

owning

them

and

doing

your

education
,

of

taking

responsibility

for

those

decisions

too

and

owning

them

and

doing

your

education
.

Even

when

you're

exhausted

Like

I

get

that

100%
.

When

you

have

brain

fog
,

fatigue
,

you

don't

feel

good
,

you're

barely

getting

out

of

bed

in

the

morning
.

I

get

that

aspect

of

it

for

sure
.

But

you

can't

Education as Part of Patient Care

Speaker 1
34:06

make

an

informed

decision

if

you

don't

learn

the

education

and

put

the

work

in
,

and

that's

hard
,

it's

very

hard

to

do

as

a

patient
,

especially

when

it

comes

to

owls
,

because

no

one

really

wants

to

talk

about

that

other

than

you
.

Clearly

you

want

to

talk

about

that
.

Speaker 2
34:23

If

you

show

me

a

picture

of

poop
,

I

will

look

at

it
.

Speaker 1
34:25

Yeah
,

and

I'm

not

going

to

be

bummed

out

by

it
.

Speaker 2
34:27

It's

not

weird
,

it's

just

pulling

a

job
,

it's
,

it's

education
.

Speaker 1
34:29

It's

dinner

conversation

at

this

point
.

My

son

is

five
.

Speaker 2
34:35

I

told

him

the

other

day

and

I

probably

shouldn't

have

told

him

this
,

but

I

was

like

you

know

what

your

dad

does

for

a

living
?

He

goes
.

What

I

said

I

look

at

butts

all

day
,

he

goes
.

Excuse

me
,

it's

the

same

thing

as

telling

a

five-year-old

boy

that

I'm

Michael

Jordan
.

My

wife

was

like

why

did

you

say

it

like

that
?

That's

not

a

good

idea
.

But

yeah
,

so

poop
,

you

know

it

is
.

I

mean
,

we

all

poop
.

It's

really

important

and

when

we

don't

poop
,

well
,

it

causes

a

lot

of

stress

and

anxiety
.

So

it's

important

to

hash

that

out
.

Can

I

ask

you
,

as

someone

with

endometriosis
,

what

are

some

of

the

common

bowel

issues

that

people

like

I

see

people

in

clinic

but

what

is

like
,

what

are

some

of

the

day-to-day

concerns

that

have

come

up

in

your

life

that

you'd
,

you

know
,

that

think

you

think

people

would

really

want

to

hear

about

in

terms

of

just

making

sense
,

heads

and

tails

of

why

things

are

the

way

they

are
?

Speaker 1
35:22

That's

a

wrap

of

part

one

of

our

two

part

series
,

and

if

this

episode

had

you

nodding

along
,

taking

notes

or

just

feeling

seen
,

you're

not

going

to

want

to

miss

the

next

one
.

In

part

two
,

we're

diving

into

some

seriously

important

and

often

overlooked

territory

like

painful

bowel

movements
,

the

gut

microbiome

and

how

all

of

that

ties

into

chronic

illness
.

Dr

Zach

even

flips

the

script

a

bit
,

asking

his

own

questions
,

so

you

get

to

learn

right

alongside

him
.

It's

real
,

it's

raw

and

it's

packed

with

insight
.

So

make

sure

you're

following

and

share

this

episode

with

someone

who

needs

it
,

and

get

ready

because

part

two

is

coming

in

hot
.

Until

next

time
,

continue

advocating

for

you

and

for

others
.

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