April 23, 2025 • 37 mins
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Dr. Zac Spiritos, a neurogastroenterologist, shares his expertise on the complex connections between endometriosis and gastrointestinal symptoms. We explore the critical role of the nervous system in gut function and discuss practical approaches to managing painful bowel movements, bloating, and food sensitivities.
• Common GI issues with endometriosis include chronic constipation, diarrhea, bloating (endo-belly), and food sensitivities
• The nervous system plays a crucial role in gut function and pain perception
• Regular bowel movements are foundational for addressing other GI symptoms
• Slower gut motility is common in patients with Ehlers-Danlos Syndrome and endometriosis
• Antidepressants can be effective for gut pain by modulating pain signals, not treating depression
• The microbiome is promising but testing lacks standardization and actionable insights
• Painful periods are not normal and should be investigated, particularly if they disrupt quality of life
• Endometriosis is often misdiagnosed, with patients seeing an average of 12 providers before diagnosis
• GI symptoms can sometimes appear before traditional gynecological symptoms of endometriosis
• Finding providers who are open to dialogue and willing to investigate complex symptoms is crucial
If you're struggling with endometriosis and GI symptoms, start tracking your symptoms carefully, particularly around your cycle, and don't give up if your first provider doesn't have answers.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Why are my bowels so cranky when I have to go to the
bathroom?
And what does the microbiomehave to do with anything?
Or what is the microbiome?
And what would a doctor ask apatient if they had
endometriosis?
To learn more?
Don't we wish we all had thosedoctors?
Well, stick around, becausethat's exactly what we're going
to be covering in this episodewith Dr Zach Spiritos.
(00:20):
You won't want to miss it,spiritos.
You won't want to miss it.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
growing along the way.
This podcast is not asubstitute for medical advice,
but a supportive space toprovide community and valuable
information, so you never haveto face this journey alone.
(00:41):
We embrace a range ofperspectives that may not always
align with our own, believingthat open dialogue helps us grow
and gain new tools.
Join me as I share stories ofstrength, resilience and hope,
from personal experiences toexpert insights.
I'm your host, alana, and thisis IndoBattery charging our
lives when endometriosis drainsus.
(01:05):
Welcome back to IndoBattery,grab your cup of coffee or your
cup of tea and join us at thetable, as today, we continue
with part two of our two-partseries, featuring our guest, dr
Zach Spiritos, aneurogastroenterologist who
practices curious,patient-centered care.
He looks at the body as a whole, not just as a collection of
(01:26):
symptoms.
His approach is especiallyimpactful when it comes to
addressing GI-related issueswith those with complex
illnesses.
If you haven't had a chance tolisten to part one yet, I highly
recommend pausing here andgoing back.
It's full of context, insightand moments that really set the
stage for what you'll hear today.
(01:46):
But, just as a reminder, thisis where we left off and where
we're going.
Speaker 2 (01:53):
Can I ask you, as someone with endometriosis, what
are some of the common bowelissues that people like I see
people in clinic, but what islike the?
What are some of the day-to-dayconcerns that have come up in
your life that you think peoplewould really want to hear about
in terms of just making sense,heads and tails of why things
are the way they are?
Speaker 1 (02:19):
Right.
I mean what I hear a lot andwhat I've experienced is that
it's automatically assumed thatwe have IBS because we have
chronic constipation, chronicdiarrhea and then bloating,
bloating, bloating, bloating.
You know we talk aboutendo-belly.
Endo-belly is a very real thingand it can happen.
(02:40):
You know, you can wake up onemorning and feel great and then
midday you literally can't putyour pants on and you know, and
a lot of it is cyclical,although not always, it can vary
all month long and then anotherpart of that is just that
nausea, nausea, vomiting, havinga hard time with food, keeping
it down, but also just notwanting to eat in general
(03:03):
because it doesn't feel good.
You get a lot of joint painwith certain foods.
You get a lot of I mean justthat inflammatory response.
I think we see a lot of thatwith endometriosis and a lot of
people struggle with just morefood intolerance.
A lot of people it's gluten, alot of dairy or soy.
For me specifically and I'vesaid this time and time again,
(03:26):
people are probably sick of it,but I don't have the same
response to that as other people.
I have a hard time with beefand eggs.
It's so random.
We struggle with food and thengoing to the bathroom and then
we tie to that.
We talk bowels, we talk thataspect of it, but also a lot of
(03:48):
us really struggle with UTIsthat aren't UTIs, so that is a
huge correlation as well.
Or overactive bladder, whereyou feel like that sense of
urgency I got to go, I got to goright now.
That commercial, the got to go,got to go right now.
There's a lot of that.
That kind of all kind of wedeal with.
(04:09):
I'm not sure if I'm answeringthat to you very well.
Speaker 2 (04:12):
You answered that perfectly.
And there's one thing thatunderscores almost all of this,
and that's the nervous system.
Right?
If you have that person withdiarrhea and constipation, I
guarantee if I I can't guaranteeit nine times out of 10, if I
scope that person and do dualstudies, it's going to be
completely normal, right?
So why is that?
It's the nervous system, and sothat's what IBS is.
(04:33):
But also, if someone hascomorbid POTS, they may have a
slow moving colon, which againgoes back to the nervous system.
So how do we mitigate that?
And it can be again,everybody's different and a lot
of issues.
Whether it's bloating pain, oneof the first questions I ask is
how often do you poop?
Because if you're not poopingvery often, nothing is going to
(04:55):
solve itself.
Like bloating, like amazing 5out of 5 Yelp review supplement
is going to help this.
Nothing's going to work unlessyou poop regularly.
And it's easier said than done,right, but I refuse to go into
anything else unless you'repooping regularly, because we
have to get the pipes clean.
There's a backup on 95.
(05:16):
Everything before that itdoesn't work.
You just got to clear that outfirst.
Speaker 1 (05:20):
Right, so yeah, and that can be.
Speaker 2 (05:21):
We always start with.
I always talk about lifestylethere first, Right, so yeah, and
that can be.
You know, we always start with.
I always talk about lifestylethere first.
You know, drinking enough water, eating sufficient fiber and
fiber can be tricky because itcan lead to bloating, and so
there's an art to that and it'sstarting low and going slow and
trying to find less fermentedforms of fiber.
You know, psyllium husk is agood one If you really can't
(05:44):
tolerate any fermentation at all, citric cells and artificial
fibers.
That doesn't cause any bloating.
I tend to like that lessbecause it doesn't really
benefit our microbiome.
But there are forms of higherfermented carbs or fibers that
are called FODMAPs that wegenerally like to avoid in that
patient population.
Yeah, like low fermentationfiber sources is a good place to
(06:08):
start.
Movement's a good one, but Irecognize if you deal with
post-exertional malaise, brainfog, like moving can be tough.
So I say that with a grain ofsalt.
Speaker 1 (06:16):
Right.
Speaker 2 (06:17):
And then, you know, sometimes we do use laxatives as
well, depending on what's goingon.
And there are certain ones thatare most, are really, really
safe and don't cause nolaxatives, cause a dependence on
the colon, like no one willmake the colon leave.
That's a myth that has beendebunked, fortunately, and we
try to do things withoutmedication.
But sometimes you needsomething to help that colon
(06:37):
squeeze or to get more waterinto that colon.
And then there's issues like ifsomeone has EDS, a pelvic floor
dysfunction is a really bigdeal.
Speaker 1 (06:45):
Same with endo.
Speaker 2 (06:47):
Yeah Huge deal, and that is I had three patients
today.
Like I've been on laxatives foryears, I can't find the right
one.
It's because it's not alaxative issue, it's a
coordination issue.
It's because we're notevacuating well enough, and so
we can talk about that too.
But yeah, it's the firstconversation when people have
nausea bloating.
Speaker 1 (07:05):
It's just making sure that we're-.
What do you do for patients whohave pain with bowel movements?
Because that is a very bigthing for the endometriosis
patients?
Obviously, if you have lesionsobstructing your bowel you're
going to have pain and that youknow.
Maybe it's getting the properexcision specialist that can do
those bowel resections or whocan you know take care of that.
But there are those patientsthat they're not there yet.
(07:27):
Are there ways to help withpainful bowel movements.
Speaker 2 (07:31):
It's a really good question and so it all depends
on what's causing the pain.
So if it's endometriosis andsome you know, I don't know the
data between painful bowelmovements and endometriosis If
you treat the endometriosis thatbetter.
But my sense is that.
So the first issue is like whatdoes the poop look like?
Is it hard and pebbly?
Is it just if you just if it,is it painful, just coming out
(07:54):
because it's goodness, it'sdesiccated, it's hard, it's
dehydrated and just have a toughtime coming out?
So that's low-hanging fruit.
Just getting the like kind ofmoistening the stool is is a
good place to start with waterfiber.
Soluble fiber works as a spongeto absorb a lot of water and to
make that stool softer.
And sometimes you may needlaxatives as well.
But painful bowel movements issomewhat not pathognomonic.
(08:16):
But a lot of patients with IBShave this and it's this very
highly sensitized nerves in thegut.
So how do you make it lesssensitive?
And that's an individualizedconversation.
So first and foremost is, howdo we get from those nerves?
Our brain is quite good attuning out pain signals that it
(08:37):
doesn't need to hear.
If you break your foot, yourbrain kind of needs to hear
about that.
But when you poop like yourbrain doesn't really need to
hear about what's going on inyour colon.
It doesn't need to hear thosepain signals and your brain has
a really tough time tuning thosesignals out if it's stuck in
fight or flight mode.
So I'm always talking about howwell do you sleep, because you
can really never get a fight orflight if you're not sleeping
(08:58):
well.
How often do you get outside?
Do you exercise?
And then we talk about methodsto get us in back into
parasympathetic mode, which isit's meditation, something that
worked for you.
Hypnosis worked for some people.
Cognitive behavioral therapyreally works well.
If someone has a lot of reallyum, it's called catastrophizing,
(09:19):
like, oh goodness, I'm bloatedtoday, now, today's ruin, right,
and that thought process justmakes things so much worse.
So it changes your thoughtpatterns behind the symptoms,
which it takes some time.
Some people don't buy this whenI first say it, but those
thought patterns can makesymptoms and pain way, way worse
.
And then sometimes I bring upmedications.
(09:39):
There are laxatives likelinacletide or linzess that
actually have analgesicproperties in the colon as well.
So they make you poop but alsohelp with pain receptors too.
Okay.
And then we use antidepressantsInteresting and this is a
controversial topic, and I havethis Instagram account where I
put a lot of information outthere and every time I talk
about antidepressants, peopleare like why are you giving us
(10:00):
this poison?
I'm like, hold on, it's not foreverybody and I want to preface
this.
It is a valuable tool that weuse in IBS and I'm going to
break down why, because I alwayswanted to say this on a
platform.
Okay, so we don't useantidepressants for your
depression or anxiety.
Okay, we use them for theirneuromodulator problems.
Speaker 1 (10:18):
What does that?
Speaker 2 (10:18):
mean, okay, so let's take.
There's a medication calledCymbalta which is a selective
serotonin and norepinephrinereuptake inhibitor.
So norepinephrine, otherwiseknown as adrenaline, really
helps with pain.
So say, for example, we'replaying a basketball game, right
, you're going two on two, oneon one.
You're playing against yoursworn enemy.
You turn your ankle, but you'rekind of able to gut out the
game because of adrenaline.
(10:38):
You don't feel that ankle awhole.
The next day it hurts.
I mean, it's bananas, you gotto ice, you got to rest, all the
stuff that us old people do.
But so adrenaline is a reallynice chemical that we can use in
our own body to tune out painsignals.
So Cymbalta really helps withneuromodulation and turning down
the pain signals at the levelof spinal cord up to the brain.
(10:59):
So the brain is unable to tuneout those pain signals anymore.
Cymbalta really helps us withthat.
The beautiful thing about it.
So one also someone's dealingwith kind of comorbid, really
intrusive anxiety, it does helpwith that.
But if not, this medication doeswork as well.
People are open to it.
And the beautiful thing is wecan get people off this
medication.
So we benefit fromneuroplasticity, so those nerves
(11:21):
can learn, adapt and grow overtime.
So we're, after being onCymbalta and being pain-free for
effectively 12 to 18 months.
We can wean people off themedication.
The pain doesn't come back.
So that's how we useantidepressants.
Okay, it is not forever, I get.
Being on a medication is notideal, but it is a tool in our
toolbox if we choose to use it.
(11:41):
And the beautiful thing aboutirritable bowel syndrome
visceral pain like this isthere's so many ways to go about
it.
You want to get hypnotized?
Let's press that button.
You want to use a medication?
Cool, we can do that too.
And so everybody's plan isdifferent and unique to who they
are, what their goals are andwhat appeals to them.
Speaker 1 (12:00):
Interesting.
I'm so glad you broke that downfor us, because that's I mean,
we are always looking for toolsto put in our tool belt because
there's different ways to handleit for everyone, and we see
this with hormones, we see thiswith you know, care and
treatment is that everyone isgoing to be different in what
they need, desire and want, andso to look at it and have
(12:25):
different tools to kind of playoff of and be able to really
navigate your care, that way ispowerful.
I mean knowledge is power,right, so put more power tools
in your belt because we canreally ramp that up a little bit
more.
I have a question that I thinkwe'll see if we can do this With
EDS and endometriosis do yousee more sensitivity with like
(12:54):
do you see more lazy, gut withthis, or lazy, or like the
microbiome being off more?
Speaker 2 (13:00):
Hmm, there's a lot to unpack there.
I think the first question Ican certainly answer and that
EDS patients are prone to slowermotility.
Speaker 1 (13:10):
Right.
Speaker 2 (13:10):
Okay.
So not only in the stomach, butalso the esophagus, the small
intestines and the colon.
So the first thing I'm thinkingabout is is this person able to
get by with lifestyle measuresalone, because perhaps their
colon just needs a kick in thebutt to squeeze more, and that's
where we have some laxativesthat really work in that way.
So, yeah, the answer is yes.
Patients with EDS tend to havemore sluggish motility.
(13:33):
The gut microbiome question isvery fascinating fascinating,
and we're not ready to answerthat, and this is a hotly
debated online as well, and so,you know, I really hope that in
five to 10 years, we canleverage the microbiome to get
people feeling better.
We're just not quite there yet,and so people are working
really hard to understand.
(13:53):
What is Alana's microbiome?
What should that look like?
Okay, so when you test yourmicrobiome and they say, okay,
they showed this bacteria, thisbacteria.
Is that right or wrong for you?
Right, testing someone'smicrobiome is saying you know,
it's like your hair length, likeshould my cause?
My hair isn't like your hair.
Should I grow my hair longer?
Should my microbiome be likeyour microbiome?
We don't know.
And so when you do these tests,we just don't know what to
(14:14):
compare it to.
And I'm going to kind of go ona little tangent here.
But you know, in any test thatwe order in medicine, you have
to understand the testproperties.
Okay, there's a test called thelipase that we use for
pancreatitis and it's usedinappropriately all the time and
it'll be high but the personisn't having symptoms consistent
with pancreatitis.
Well, the test isn't good.
In this clinical context youhave to understand the context
(14:37):
of the test, the sensitivity,the specificity, the accuracy.
There's all these testcharacteristics that we know
about all these tests.
There's a lot of microbiometests.
We have no idea about theaccuracy of any of them
Interesting.
So when patients come to mewith this I'm like great, I
don't know.
I don't know, we're not thereyet.
(14:58):
We just don't understand howgood this test is.
And then, secondarily, we don'tknow how to manipulate it,
right.
So you say, okay, so we want toturn these knobs and get more
of this bacteria and less ofthis bacteria.
Okay, say that that's still alittle bit misinformed because
we don't know manipulating thatdata will get you feeling any
better.
Let's say we say start thisprobiotic.
Are we sure that works?
The answer is no, right,because that test hasn't been
(15:21):
done.
I tend to believe, based on thedata that I've read, that
probiotics are fly buyers.
Right, they'll inhabit yourcolon as long as you take them,
they're not sticky and theydon't linger.
So are you then forced to takea probiotic for 50 bucks a pop
indefinitely?
Are we sure that's a good idea?
And so I think there's a lot ofquestions that we need to
(15:43):
answer, and I've met people thatsaid probiotics changed my life
.
I can now use the bathroomagain, but the majority of
people that I see in clinicssaid they didn't do a darn thing
.
And so I say use probiotics atyour own discretion.
I will never recommend itbecause I don't think.
I don't know yet.
I just don't know.
And so, going back to theoriginal question I'm sorry, I
(16:04):
kind of soapboxed.
Speaker 1 (16:05):
No, I like it.
This is good, because I'llfollow up first.
Speaker 2 (16:09):
I don't know how the microbiome affects endometriosis
, eds, you know and some peoplesay like, oh, look at obesity.
There are these patients thathave this microbiome changes in
obesity.
I was like, well, are you surethat didn't happen as a
consequence of obesity, or didthat lead to obesity?
And are you telling me that ifwe switch the microbiome, that
people will lose weight?
Are we sure?
And the same thing for allthese conditions, right?
(16:30):
So if we test someone'smicrobiome in IBS, I'm like, is
this because of IBS or did thiscause IBS?
And what does it mean?
Do I make these changes as theIBS go away?
And we're just goodness we are.
They're really smart peopleworking really hard.
And I really encourage peopleto look at Will Bolshevitz's
Instagram.
He's a friend, he's a GI doctor, he's a really smart guy
(16:53):
talking about the microbiome.
He's a really good resource outthere for people who want to
learn more.
Speaker 1 (16:59):
Well, and that leads me to like the stool testing,
because a lot of people will dothe stool testing to see what
they're lacking or what theyneed or what's going.
You know they use that as ametrics for wellness, if you
will.
What are your thoughts on thestool testing?
Because a lot of people willtry them in effort to figure out
what's going on with their body.
Speaker 2 (17:18):
I don't think we know what to do with those tests yet
I never recommend them.
I've yet to see it benefitanybody.
I also don't work in thefunctional medicine space right,
where they use these tests alot.
We haven't brought them intotraditional medicine because
there's not enough data behindit.
So we like to say when I getthis test, what is the
(17:39):
likelihood that it's informingme of someone's health and their
health challenges and what'sthe likelihood that this is a
false positive?
Is it a false negative?
How accurate is it and is itactionable?
If I get this data, what can Ido to improve it?
And if I'm confident that I canimprove it, we'll make this
(17:59):
person feel better.
There are so many steps inthere that we haven't figured
out with microbiome testing.
Forget the fact that if you getyour microbiome test from five
different places, you're goingto get five different answers,
right.
So the test itself is justunreliable.
So I get what people want toknow and this is one of those
things that I categorize in youknow, just to know.
But is it really going to helpyou?
And my answer is I'm not sureyet and I haven't seen any data
(18:22):
to suggest that it really helpspeople.
But I have, you know, I startedthis Instagram and I'm
interacting with a lot of peoplethat I otherwise wouldn't have
met, and people say it changedmy life and I said how?
And no one has given me ananswer yet.
I am so open to learning more.
I am not in this traditionalmedicine camp where I say it's
pseudoscience, it's made up.
I don't believe that.
(18:42):
I just don't know how to use it.
If someone can teach me how toreliably use it, because there's
no clinical data to say that itworks yet, I promise you, I'm
all ears.
I say this with just opencuriosity and wanting to learn
more and I'll say I use.
You know, I interact with a fewnatural doctors or naturopaths.
I said we use this all the time.
I said but how, how do we useit?
(19:03):
And you test it afterwards what?
How do you leverage it?
Do you use dietary measures?
Do you use probiotics?
Do you use exercise?
Do you sleep?
And I have.
I haven't really got an answeryet.
So I'd love to have thatdialogue with somebody one day,
if they're open to have it, yeah.
Speaker 1 (19:18):
So, speaking of your Instagram, tell us what your
Instagram handle is, so thatpeople can follow you, because I
think they should.
Speaker 2 (19:24):
It's DrZachSpiritos.
Speaker 1 (19:27):
There you go.
Okay, what is your biggestpiece of advice?
Before we move on to thequestion portion for you, what
is your biggest piece of advicefor patients who are struggling
to find their diagnosis, or oneof the biggest challenges you,
as a provider, have in helpingpatients with these challenges?
(19:48):
It's twofold.
Speaker 2 (19:49):
So yeah, so I think that I would.
I would catalog all of yoursymptoms, okay, and when you
bring it to it, if you choose togo to a doctor for this, I
would write it down in a verysuccinct.
This is what really bothers me.
I've done some research andthis is what I think it may be.
(20:10):
What do you think?
Okay, because it really andobviously go through the whole,
like you have to tell your wholehistory and go through
everything and let them come totheir own conclusions.
And if you guys are on the samepage, beautiful, okay.
But if perhaps they're like,maybe this is IBS, I'm like I
disagree.
You have to say, well, I thinkit's this, and if it's not this,
(20:33):
or you don't think it's this,can you tell me why?
And if that provider isn't opento that dialogue, then you have
to change teams.
And it's just as simple as that.
If you don't have a providerthat is open to a dialogue and
curious about what may be goingon, then they're just they're
not the right person for you,because, by nature, if you're
(20:54):
listening to this, you have acomplex, chronic illness, right,
and it's it's going to bechallenging, it's going to be an
ongoing effort between you andyour medical team.
So I really like when someonesays like this is what I have,
this is what's really reallybothering me, because I also
know that people's brains arecompletely washed when they go
to a doctor's office.
I went to a doctor a few timesthis year because I had some
heart stuff going on and Icompletely just forgot
(21:14):
everything when I went to gotalk to them.
And I'm in medical, it justhappens right and you're so
excited to get there.
They rush in right.
They're sweating becausethey've been seeing 20 patients
that morning and they're likethey haven't shaved or I don't
know if that's a guy, I guessyou know they're unkempt.
You're like, oh, this guy lookslike he's disheveled and I'm
trying to condense everything.
But a piece of paper, really,you know it anchors you to what
(21:37):
your reality is and what's beengoing on.
Speaker 1 (21:39):
Yeah, okay.
What are the challenges youface that patients should be
more aware of?
Speaker 2 (21:44):
Goodness, I mean, there's a lot really tough.
I'm trying really hard.
I think people get frustratedby the lack of progress
sometimes and the beauty of so.
I'm a neurogastroenterologist,which means that I deal with a
lot of invisible chronicconditions, and so there's not a
lot of data in this space, anda lot of my decisions and
(22:05):
therapeutic plans are based onwhat I think is an intimate
knowledge of pathophysiology andmedications and a good grasp on
the testing out there and so.
But it's not like hey, I brokemy ankle.
There's an x-ray of my brokenankle, you're going to fix it.
That's going to get me better Ahundred percent.
This is different.
It's a lot of.
It's certainly not guessing,but it's.
It's a we're, it's expertopinion and we'll.
(22:29):
I'm trying so fr freaking hard,I promise you, and we're going
to try.
And if this hits, awesome,right, we're not going to get
100% better in three months, but30% is what I'm looking for.
If it doesn't work, let me knowimmediately and we will pivot
and try something else, becausethis is an ongoing evolution,
right, and so this is invisible,right?
I don't have a test result tosay that's it, and unfortunately
(22:50):
, those tests don't exist,because a lot of this is based
in the nerves and dysautonomiawhich we, quite frankly, can't
test for the most part, and so,yeah, I just it's be patient
with the process, and we'relooking for getting 1% better
each day, as opposed to acomplete overhaul.
Speaker 1 (23:06):
Yeah, that's really good advice and that's something
that I think we all need tohear.
This is the portion of thepodcast that has been a favorite
, which is you get to ask me anyquestions you want, whether
it's patient-based or provider.
Oh, I know, just get excitedfor that because it may not be
good, but we'll see how it goes.
(23:27):
But you can ask any of thesequestions because you aren't
endometriosis specific, and so Ithink it's important for people
to hear things that otherproviders have as far as
questions go to the patient, andthis is kind of a reverse role
to play.
So let's go for it.
Any questions you have, I'mhere to see if I can answer them
(23:49):
you have.
Speaker 2 (23:53):
I'm here to see if I can answer them.
Bring it on, All right.
So what is the biggestmisconception about
endometriosis that doctors have?
And I think I've said probablythree or four things that I'm
sure in your head you're like.
That's just blatant false.
Yeah, yes and yes, you've got alot of incorrect.
Speaker 1 (24:07):
So one of the biggest things is the definition which
they are taught endometrium andit's not endometrium, it's
endometrium-like cells.
They are actually two differentcells.
They actually have researchbacking this up, that it is not
retrograde in the sense thatit's not the endometrium coming
out, flowing out, going into theabdominal cavity or the pelvis.
(24:29):
It is actually endometrium-like.
They're two different things.
Endometriosis produces its ownestrogen.
It's a crazy disease that ithas its own brain, it has its
own food source and it canprovide its own food source, and
so that's probably one of thebiggest misconceptions is that
it comes flowing out and it'sendometrium.
It's not.
They're different cells andthat's why it's been found all
(24:52):
over the body.
It's been found in the brain,it's been found in the nose.
It's been found there's morecases showing up cardiothoracic
diaphragmatic.
It's been found everywhere, andI think there's that's the
reason that it can be so complexto diagnose as well is because
depending on where it's locatedand how it's responding with
(25:12):
your nerves means that yoursymptoms are going to show
differently and you're going torespond to that differently.
Right, we've talked about thebrain and how that has such a
huge role in how we perceivepain and how we adjust to pain
right and in our environmentsit's highly inflammatory in
nature.
It's genetic in nature as well,which some people have a hard
(25:34):
time understanding.
That Dr David Redwine he was agenius at this, he really dug
deep into the genomic aspect ofit.
It tends to be verygenerationally induced.
So if someone in your familyhas endometriosis, you are seven
times more likely to have it.
So when I'm sitting here as apatient who's had deep
(25:57):
infiltrating endometriosis, Ihave two daughters.
They're likely to have it.
In fact, I would say this mydaughter, who is not yet on her
cycle, is showing signs in herGI in the way that I did, is
showing signs in her GI in theway that I did.
So we're seeing a lot ofgenerational endometriosis and I
don't know and this issomething that you know, I'm
(26:18):
going to talk to another doctorabout but I don't know why it
seems to be getting worse and Ithink maybe it could be
environmental.
It could be that we are in aheightened state in the
sympathetic system, more wearen't good at balancing our
sympathetic, parasympatheticsystem.
I think there's that role toplay in there, and Dr Mark
(26:42):
Possover, who is aneuropelviologist, talks a lot
about this and how we don't needto downregulate our sympathetic
, we need to up-regulate ourparasympathetic, because if
you're trying to raise thatsympathetic, it's so hard, it's
daunting, it's so hard to do.
But if you can increase yourparasympathetic, then that's
(27:03):
where it'll kind of be thatteeter-totter of leveling out,
if that makes sense.
So those are just some of thebiggest misconceptions that we
kind of face.
Also, hysterectomy will cure it.
It does not cure it.
Ablation gets rid of it.
It does not get rid of it.
Ablation really just cuts it atthe surface instead of taking
all the disease out.
It's like a cancer.
(27:24):
It grows like a cancer.
Take it from the root, and sothat's probably some of the
biggest misconceptions that wehear amongst others.
But those are some of thebigger ones that you will hear
time and time again if you lookonline or go to a doctor's
office fundamentally changesfrom what its origin was to
(27:54):
something different, and that'scomplete news to me.
Speaker 2 (27:55):
Yes, and then you said that your daughter is
having GI symptoms.
Do you find that GI symptomsare sometimes the canary in the
coal mine for endometriosis?
Can they occur before kind ofclassic gynecologic symptoms, or
how do you see that play out, Iguess the chronology of those
things?
Speaker 1 (28:15):
I do.
I absolutely do so when we'relooking at food sensitivity and
getting nauseous diarrhea tocertain food and you can track
that cyclically prior to theircycle, because we start cycling
before we have menstrual flow.
Right, that's our bodies, thehormones shifting and changing.
So as I'm seeing these shiftsand changes, I'm seeing her
(28:37):
become more sensitive to certainfoods.
I'm seeing that she's having aharder time going to the
bathroom.
She has more constipation andthen she also is.
She's always had a sensitivestomach, but I do think that it
has gotten progressively worseas she's starting to get into
that hormonal shift.
So I look back at my history andI don't remember a lot, but I
(29:00):
do remember having a hard timeas a kid with the GI symptoms.
Most people I talk to who havehad GI symptoms in their
diagnostic process figure it out.
A lot of it starts prior totheir menses.
So it's just something to behighly aware of and it's
something that a colonoscopy orendoscopy is not going to catch
(29:20):
because it's from the outsidegoing in.
So most of the time a lot ofpatients will have a colonoscopy
to try to figure out what'sgoing on and they're going to
say well, it's clean.
It's clean as a whistle Likethere's nothing there and and
then an endometriosis surgeonwill go in and they'll find, you
know, pretty deep disease inthe bowel wall and which you
(29:43):
know, or their rectum or their,you know.
So it kind of is prettyinvasive, but sneakily so
sometimes.
Speaker 2 (29:51):
Okay, tricky.
And so when someone hassymptoms, okay, and they are
concerned that this may beendometriosis, like the parallel
in my world is like and IBS isreally tough to diagnose, so
where do you start Right?
And then, if imaging which Iimagine imaging is rather
imperfect for picking upendometriosis, where does that
(30:12):
dialogue continue?
Is it just a clinical diagnosis, like I have these symptoms,
we've rolled out everything else, like it's got to be this, or
how do you, how will you informsomeone to start that
conversation with the doctor andstart that diagnostic journey?
Speaker 1 (30:23):
Yeah, well, I think what you said before is
listening right.
So as a patient, we as patientshave a responsibility to track
our symptoms and if we have ahard time, have a support person
that will help you.
Because I will tell you, myhusband picked up on way more of
my symptoms than I ever did.
He was able to pinpoint thetime of month that I was having
(30:45):
a hard time, like he would beable to see things that I
wouldn't, because I was in somuch pain, I was in debilitating
pain, and so he was picking upthat I was moody prior, like PMS
.
They say PMS if you're moody,that's a good indicator that you
know moody, plus maybe painfulperiods.
Periods should not be painful.
(31:06):
We've said that they're okay tobe painful, they should not be
painful.
Uncomfortable is one thing,painful is a whole nother thing.
If you are missing out on yourquality of life, if you're
having to cancel events or notbeing able to go to school, if
you're young, if you are havingreoccurring UTIs, things like
that, during your period, that'sa good indicator that that
(31:27):
could be endometriosis.
And so I think for a lot ofpeople, painful periods have
been normalized.
It's not normal and we shouldbe looking at endometriosis as a
culprit.
But if you're havingconstipation, diarrhea, more
food sensitivities during yourcycle or maybe during ovulation,
that's a good indicator puttingall of those together.
(31:49):
And then interstitial stessitisgets.
I can never say it right, butthat gets categorized often as
as something when it actually isendometriosis on the bladder.
So there's a lot that you canlook at.
Another thing that I thinkproviders could look at more is
the muscle.
I'm your most alana and this isendobattery charging your life.
When endometriosis drains,that's a good indicator that
(32:13):
it's on the utero-cycralligaments and that is not a
non-common place for it to be.
It actually is one of thenumber one places to be, so just
kind of seeing.
Okay, here's a checkbox ofthings that they're going
through.
This isn't just one or theother.
This is like this is a lotgoing on during specifically the
(32:34):
cycle, but if it's been goingon long enough, sometimes it's
all a month long.
So that's where it gets tricky.
The question on the imaging alot of OBGYNs will do imaging,
but it's usually they'll say, oh, there's nothing in there, we
don't see anything, there'snothing in there, we don't see
anything.
This is where an endometriosisspecialist is going to be the
(32:55):
best option for you if you wantto do imaging, because they can
do things like a sliding or adynamic ultrasound where they
can see.
So if you're looking at youruterus, your ovaries, and they
go to put the vaginal ultrasoundin and they're moving it, if
it's all moving together, that'sa good indicator that it's all
tethered together right, likethere's lesions holding that
(33:16):
together.
Now if it's moving separately,usually that's not an indicator
of deep infiltratingendometriosis, it's just, but
that doesn't mean that you don'thave it, because it could just
be minimal on the surface butstill painful.
It doesn't dictate the pain andthey can't do that in like the
utero sacral ligaments and stufflike that.
(33:36):
So there is imaging that youcan do, especially bowels.
They can tell on MRI and onultrasound If, if they're
experienced in what they'relooking for, general GYNs are
not experienced enough to dothat.
They're not trained how to dothat, and so these doctors all
they do is endometriosis and sothey're able to identify the
(34:00):
anatomy that's distorted, sothat they can say I'm 95% sure
you have endometriosis.
And again, it's hard to saydefinitively until you have a
pathological confirmation of it.
So long version, but that'sgenerally how.
Speaker 2 (34:20):
No, that's very helpful and it sounds like you
just need to find yourselfsomeone who's well-versed in
this and if you get negativetesting but you're like,
goodness, this is something isnot right, is to continue
looking.
It sounds like there arespecific GYN physicians that are
more savvy with endometrialdisease, so it's good to hear.
Speaker 1 (34:38):
It's very informative .
Yeah, yeah, and as a patient,you know we can't stop at one no
from a doctor and sometimes wecan't stop at seven.
I think the average providerswe see to diagnosis is roughly
12.
So that puts things inperspective a little bit and it
goes anywhere from GYNs, primarycare, to GI doctors to anything
(35:00):
kind of depending on yoursymptoms.
Now, those are only symptomsthat I talked about that are
more pelvic-related symptoms.
There's diaphragmatic andcardiothoracic and other things.
But yeah, that's generally whatpeople are going to deal with.
Speaker 2 (35:14):
Wow, Well thank you for being such an amazing
patient advocate and makingpeople feel heard when otherwise
their teams that should belistening to them or hearing
them may not kind of offer thatsolace.
So what you're doing is reallyamazing yeah.
Speaker 1 (35:30):
Well, I thank you for what you're doing and being
open to conversation andlearning about all the aspects
of medicine, not just whatyou've learned in school, but
opening up and expanding yourhorizons, if you will, to learn
more to help your patients,because it's obvious that you
got into this for the patientcare, not the paycheck, so
(35:55):
appreciate that.
Speaker 2 (35:56):
Oh yeah, oh yeah.
It's my pleasure.
I I've a lot of fun doing it, alot of challenges, but I learn
from patients every single day,and not only they're.
You know the pathophysiology ofwhat may be going on, but
they're just like how they'vebattled through all of this and
the resilience that comes with.
You know dealing with chronic,invisible conditions.
It just makes them so frickingtough and yeah, and, but they,
(36:19):
they deal with a lot.
People deal with a lot.
That's unfortunate, and Ialways make the analogy.
You know it's like.
Having one of these conditionsis like, you know, driving your
car on the highway and your carrattles and it shakes and you
take it to a car dealer Likeeverything's fine.
I don't know what you'retalking about.
Maybe you're driving it wrong.
Oh my God really.
And that's what I think youknow it's, and so I always you
know I give a lot of respect andadmiration to people dealing
(36:42):
with these conditions.
Hopefully you find the rightteam to support you.
Speaker 1 (36:46):
Yeah, and that is my hope for everyone the more
informed and more knowledge theyhave that they can find a good
team that helps support them.
We're going to have to do thisagain.
I'm sure I'm going to have morequestions at some point.
We'll have to answer some ofthese questions, but we'll have
to continue the conversation.
I love it.
Speaker 2 (37:02):
Anytime, anytime.
I had a great time.
Speaker 1 (37:04):
Until next time, everyone continue advocating for
you and for others.
Why are my bowels so cranky when I have to go to the
bathroom?
And what does the microbiomehave to do with anything?
Or what is the microbiome?
And what would a doctor ask apatient if they had
endometriosis?
To learn more?
Don't we wish we all had thosedoctors?
Well, stick around, becausethat's exactly what we're going
to be covering in this episodewith Dr Zach Spiritos.
(00:20):
You won't want to miss it,spiritos.
You won't want to miss it.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
growing along the way.
This podcast is not asubstitute for medical advice,
but a supportive space toprovide community and valuable
information, so you never haveto face this journey alone.
(00:41):
We embrace a range ofperspectives that may not always
align with our own, believingthat open dialogue helps us grow
and gain new tools.
Join me as I share stories ofstrength, resilience and hope,
from personal experiences toexpert insights.
I'm your host, alana, and thisis IndoBattery charging our
lives when endometriosis drainsus.
(01:05):
Welcome back to IndoBattery,grab your cup of coffee or your
cup of tea and join us at thetable, as today, we continue
with part two of our two-partseries, featuring our guest, dr
Zach Spiritos, aneurogastroenterologist who
practices curious,patient-centered care.
He looks at the body as a whole, not just as a collection of
(01:26):
symptoms.
His approach is especiallyimpactful when it comes to
addressing GI-related issueswith those with complex
illnesses.
If you haven't had a chance tolisten to part one yet, I highly
recommend pausing here andgoing back.
It's full of context, insightand moments that really set the
stage for what you'll hear today.
(01:46):
But, just as a reminder, thisis where we left off and where
we're going.
Speaker 2 (01:53):
Can I ask you, as someone with endometriosis, what
are some of the common bowelissues that people like I see
people in clinic, but what islike the?
What are some of the day-to-dayconcerns that have come up in
your life that you think peoplewould really want to hear about
in terms of just making sense,heads and tails of why things
are the way they are?
Speaker 1 (02:19):
Right.
I mean what I hear a lot andwhat I've experienced is that
it's automatically assumed thatwe have IBS because we have
chronic constipation, chronicdiarrhea and then bloating,
bloating, bloating, bloating.
You know we talk aboutendo-belly.
Endo-belly is a very real thingand it can happen.
(02:40):
You know, you can wake up onemorning and feel great and then
midday you literally can't putyour pants on and you know, and
a lot of it is cyclical,although not always, it can vary
all month long and then anotherpart of that is just that
nausea, nausea, vomiting, havinga hard time with food, keeping
it down, but also just notwanting to eat in general
(03:03):
because it doesn't feel good.
You get a lot of joint painwith certain foods.
You get a lot of I mean justthat inflammatory response.
I think we see a lot of thatwith endometriosis and a lot of
people struggle with just morefood intolerance.
A lot of people it's gluten, alot of dairy or soy.
For me specifically and I'vesaid this time and time again,
(03:26):
people are probably sick of it,but I don't have the same
response to that as other people.
I have a hard time with beefand eggs.
It's so random.
We struggle with food and thengoing to the bathroom and then
we tie to that.
We talk bowels, we talk thataspect of it, but also a lot of
(03:48):
us really struggle with UTIsthat aren't UTIs, so that is a
huge correlation as well.
Or overactive bladder, whereyou feel like that sense of
urgency I got to go, I got to goright now.
That commercial, the got to go,got to go right now.
There's a lot of that.
That kind of all kind of wedeal with.
(04:09):
I'm not sure if I'm answeringthat to you very well.
Speaker 2 (04:12):
You answered that perfectly.
And there's one thing thatunderscores almost all of this,
and that's the nervous system.
Right?
If you have that person withdiarrhea and constipation, I
guarantee if I I can't guaranteeit nine times out of 10, if I
scope that person and do dualstudies, it's going to be
completely normal, right?
So why is that?
It's the nervous system, and sothat's what IBS is.
(04:33):
But also, if someone hascomorbid POTS, they may have a
slow moving colon, which againgoes back to the nervous system.
So how do we mitigate that?
And it can be again,everybody's different and a lot
of issues.
Whether it's bloating pain, oneof the first questions I ask is
how often do you poop?
Because if you're not poopingvery often, nothing is going to
(04:55):
solve itself.
Like bloating, like amazing 5out of 5 Yelp review supplement
is going to help this.
Nothing's going to work unlessyou poop regularly.
And it's easier said than done,right, but I refuse to go into
anything else unless you'repooping regularly, because we
have to get the pipes clean.
There's a backup on 95.
(05:16):
Everything before that itdoesn't work.
You just got to clear that outfirst.
Speaker 1 (05:20):
Right, so yeah, and that can be.
Speaker 2 (05:21):
We always start with.
I always talk about lifestylethere first, Right, so yeah, and
that can be.
You know, we always start with.
I always talk about lifestylethere first.
You know, drinking enough water, eating sufficient fiber and
fiber can be tricky because itcan lead to bloating, and so
there's an art to that and it'sstarting low and going slow and
trying to find less fermentedforms of fiber.
You know, psyllium husk is agood one If you really can't
(05:44):
tolerate any fermentation at all, citric cells and artificial
fibers.
That doesn't cause any bloating.
I tend to like that lessbecause it doesn't really
benefit our microbiome.
But there are forms of higherfermented carbs or fibers that
are called FODMAPs that wegenerally like to avoid in that
patient population.
Yeah, like low fermentationfiber sources is a good place to
(06:08):
start.
Movement's a good one, but Irecognize if you deal with
post-exertional malaise, brainfog, like moving can be tough.
So I say that with a grain ofsalt.
Speaker 1 (06:16):
Right.
Speaker 2 (06:17):
And then, you know, sometimes we do use laxatives as
well, depending on what's goingon.
And there are certain ones thatare most, are really, really
safe and don't cause nolaxatives, cause a dependence on
the colon, like no one willmake the colon leave.
That's a myth that has beendebunked, fortunately, and we
try to do things withoutmedication.
But sometimes you needsomething to help that colon
(06:37):
squeeze or to get more waterinto that colon.
And then there's issues like ifsomeone has EDS, a pelvic floor
dysfunction is a really bigdeal.
Speaker 1 (06:45):
Same with endo.
Speaker 2 (06:47):
Yeah Huge deal, and that is I had three patients
today.
Like I've been on laxatives foryears, I can't find the right
one.
It's because it's not alaxative issue, it's a
coordination issue.
It's because we're notevacuating well enough, and so
we can talk about that too.
But yeah, it's the firstconversation when people have
nausea bloating.
Speaker 1 (07:05):
It's just making sure that we're-.
What do you do for patients whohave pain with bowel movements?
Because that is a very bigthing for the endometriosis
patients?
Obviously, if you have lesionsobstructing your bowel you're
going to have pain and that youknow.
Maybe it's getting the properexcision specialist that can do
those bowel resections or whocan you know take care of that.
But there are those patientsthat they're not there yet.
(07:27):
Are there ways to help withpainful bowel movements.
Speaker 2 (07:31):
It's a really good question and so it all depends
on what's causing the pain.
So if it's endometriosis andsome you know, I don't know the
data between painful bowelmovements and endometriosis If
you treat the endometriosis thatbetter.
But my sense is that.
So the first issue is like whatdoes the poop look like?
Is it hard and pebbly?
Is it just if you just if it,is it painful, just coming out
(07:54):
because it's goodness, it'sdesiccated, it's hard, it's
dehydrated and just have a toughtime coming out?
So that's low-hanging fruit.
Just getting the like kind ofmoistening the stool is is a
good place to start with waterfiber.
Soluble fiber works as a spongeto absorb a lot of water and to
make that stool softer.
And sometimes you may needlaxatives as well.
But painful bowel movements issomewhat not pathognomonic.
(08:16):
But a lot of patients with IBShave this and it's this very
highly sensitized nerves in thegut.
So how do you make it lesssensitive?
And that's an individualizedconversation.
So first and foremost is, howdo we get from those nerves?
Our brain is quite good attuning out pain signals that it
(08:37):
doesn't need to hear.
If you break your foot, yourbrain kind of needs to hear
about that.
But when you poop like yourbrain doesn't really need to
hear about what's going on inyour colon.
It doesn't need to hear thosepain signals and your brain has
a really tough time tuning thosesignals out if it's stuck in
fight or flight mode.
So I'm always talking about howwell do you sleep, because you
can really never get a fight orflight if you're not sleeping
(08:58):
well.
How often do you get outside?
Do you exercise?
And then we talk about methodsto get us in back into
parasympathetic mode, which isit's meditation, something that
worked for you.
Hypnosis worked for some people.
Cognitive behavioral therapyreally works well.
If someone has a lot of reallyum, it's called catastrophizing,
(09:19):
like, oh goodness, I'm bloatedtoday, now, today's ruin, right,
and that thought process justmakes things so much worse.
So it changes your thoughtpatterns behind the symptoms,
which it takes some time.
Some people don't buy this whenI first say it, but those
thought patterns can makesymptoms and pain way, way worse
.
And then sometimes I bring upmedications.
(09:39):
There are laxatives likelinacletide or linzess that
actually have analgesicproperties in the colon as well.
So they make you poop but alsohelp with pain receptors too.
Okay.
And then we use antidepressantsInteresting and this is a
controversial topic, and I havethis Instagram account where I
put a lot of information outthere and every time I talk
about antidepressants, peopleare like why are you giving us
(10:00):
this poison?
I'm like, hold on, it's not foreverybody and I want to preface
this.
It is a valuable tool that weuse in IBS and I'm going to
break down why, because I alwayswanted to say this on a
platform.
Okay, so we don't useantidepressants for your
depression or anxiety.
Okay, we use them for theirneuromodulator problems.
Speaker 1 (10:18):
What does that?
Speaker 2 (10:18):
mean, okay, so let's take.
There's a medication calledCymbalta which is a selective
serotonin and norepinephrinereuptake inhibitor.
So norepinephrine, otherwiseknown as adrenaline, really
helps with pain.
So say, for example, we'replaying a basketball game, right
, you're going two on two, oneon one.
You're playing against yoursworn enemy.
You turn your ankle, but you'rekind of able to gut out the
game because of adrenaline.
(10:38):
You don't feel that ankle awhole.
The next day it hurts.
I mean, it's bananas, you gotto ice, you got to rest, all the
stuff that us old people do.
But so adrenaline is a reallynice chemical that we can use in
our own body to tune out painsignals.
So Cymbalta really helps withneuromodulation and turning down
the pain signals at the levelof spinal cord up to the brain.
(10:59):
So the brain is unable to tuneout those pain signals anymore.
Cymbalta really helps us withthat.
The beautiful thing about it.
So one also someone's dealingwith kind of comorbid, really
intrusive anxiety, it does helpwith that.
But if not, this medication doeswork as well.
People are open to it.
And the beautiful thing is wecan get people off this
medication.
So we benefit fromneuroplasticity, so those nerves
(11:21):
can learn, adapt and grow overtime.
So we're, after being onCymbalta and being pain-free for
effectively 12 to 18 months.
We can wean people off themedication.
The pain doesn't come back.
So that's how we useantidepressants.
Okay, it is not forever, I get.
Being on a medication is notideal, but it is a tool in our
toolbox if we choose to use it.
(11:41):
And the beautiful thing aboutirritable bowel syndrome
visceral pain like this isthere's so many ways to go about
it.
You want to get hypnotized?
Let's press that button.
You want to use a medication?
Cool, we can do that too.
And so everybody's plan isdifferent and unique to who they
are, what their goals are andwhat appeals to them.
Speaker 1 (12:00):
Interesting.
I'm so glad you broke that downfor us, because that's I mean,
we are always looking for toolsto put in our tool belt because
there's different ways to handleit for everyone, and we see
this with hormones, we see thiswith you know, care and
treatment is that everyone isgoing to be different in what
they need, desire and want, andso to look at it and have
(12:25):
different tools to kind of playoff of and be able to really
navigate your care, that way ispowerful.
I mean knowledge is power,right, so put more power tools
in your belt because we canreally ramp that up a little bit
more.
I have a question that I thinkwe'll see if we can do this With
EDS and endometriosis do yousee more sensitivity with like
(12:54):
do you see more lazy, gut withthis, or lazy, or like the
microbiome being off more?
Speaker 2 (13:00):
Hmm, there's a lot to unpack there.
I think the first question Ican certainly answer and that
EDS patients are prone to slowermotility.
Speaker 1 (13:10):
Right.
Speaker 2 (13:10):
Okay.
So not only in the stomach, butalso the esophagus, the small
intestines and the colon.
So the first thing I'm thinkingabout is is this person able to
get by with lifestyle measuresalone, because perhaps their
colon just needs a kick in thebutt to squeeze more, and that's
where we have some laxativesthat really work in that way.
So, yeah, the answer is yes.
Patients with EDS tend to havemore sluggish motility.
(13:33):
The gut microbiome question isvery fascinating fascinating,
and we're not ready to answerthat, and this is a hotly
debated online as well, and so,you know, I really hope that in
five to 10 years, we canleverage the microbiome to get
people feeling better.
We're just not quite there yet,and so people are working
really hard to understand.
(13:53):
What is Alana's microbiome?
What should that look like?
Okay, so when you test yourmicrobiome and they say, okay,
they showed this bacteria, thisbacteria.
Is that right or wrong for you?
Right, testing someone'smicrobiome is saying you know,
it's like your hair length, likeshould my cause?
My hair isn't like your hair.
Should I grow my hair longer?
Should my microbiome be likeyour microbiome?
We don't know.
And so when you do these tests,we just don't know what to
(14:14):
compare it to.
And I'm going to kind of go ona little tangent here.
But you know, in any test thatwe order in medicine, you have
to understand the testproperties.
Okay, there's a test called thelipase that we use for
pancreatitis and it's usedinappropriately all the time and
it'll be high but the personisn't having symptoms consistent
with pancreatitis.
Well, the test isn't good.
In this clinical context youhave to understand the context
(14:37):
of the test, the sensitivity,the specificity, the accuracy.
There's all these testcharacteristics that we know
about all these tests.
There's a lot of microbiometests.
We have no idea about theaccuracy of any of them
Interesting.
So when patients come to mewith this I'm like great, I
don't know.
I don't know, we're not thereyet.
(14:58):
We just don't understand howgood this test is.
And then, secondarily, we don'tknow how to manipulate it,
right.
So you say, okay, so we want toturn these knobs and get more
of this bacteria and less ofthis bacteria.
Okay, say that that's still alittle bit misinformed because
we don't know manipulating thatdata will get you feeling any
better.
Let's say we say start thisprobiotic.
Are we sure that works?
The answer is no, right,because that test hasn't been
(15:21):
done.
I tend to believe, based on thedata that I've read, that
probiotics are fly buyers.
Right, they'll inhabit yourcolon as long as you take them,
they're not sticky and theydon't linger.
So are you then forced to takea probiotic for 50 bucks a pop
indefinitely?
Are we sure that's a good idea?
And so I think there's a lot ofquestions that we need to
(15:43):
answer, and I've met people thatsaid probiotics changed my life
.
I can now use the bathroomagain, but the majority of
people that I see in clinicssaid they didn't do a darn thing
.
And so I say use probiotics atyour own discretion.
I will never recommend itbecause I don't think.
I don't know yet.
I just don't know.
And so, going back to theoriginal question I'm sorry, I
(16:04):
kind of soapboxed.
Speaker 1 (16:05):
No, I like it.
This is good, because I'llfollow up first.
Speaker 2 (16:09):
I don't know how the microbiome affects endometriosis
, eds, you know and some peoplesay like, oh, look at obesity.
There are these patients thathave this microbiome changes in
obesity.
I was like, well, are you surethat didn't happen as a
consequence of obesity, or didthat lead to obesity?
And are you telling me that ifwe switch the microbiome, that
people will lose weight?
Are we sure?
And the same thing for allthese conditions, right?
(16:30):
So if we test someone'smicrobiome in IBS, I'm like, is
this because of IBS or did thiscause IBS?
And what does it mean?
Do I make these changes as theIBS go away?
And we're just goodness we are.
They're really smart peopleworking really hard.
And I really encourage peopleto look at Will Bolshevitz's
Instagram.
He's a friend, he's a GI doctor, he's a really smart guy
(16:53):
talking about the microbiome.
He's a really good resource outthere for people who want to
learn more.
Speaker 1 (16:59):
Well, and that leads me to like the stool testing,
because a lot of people will dothe stool testing to see what
they're lacking or what theyneed or what's going.
You know they use that as ametrics for wellness, if you
will.
What are your thoughts on thestool testing?
Because a lot of people willtry them in effort to figure out
what's going on with their body.
Speaker 2 (17:18):
I don't think we know what to do with those tests yet
I never recommend them.
I've yet to see it benefitanybody.
I also don't work in thefunctional medicine space right,
where they use these tests alot.
We haven't brought them intotraditional medicine because
there's not enough data behindit.
So we like to say when I getthis test, what is the
(17:39):
likelihood that it's informingme of someone's health and their
health challenges and what'sthe likelihood that this is a
false positive?
Is it a false negative?
How accurate is it and is itactionable?
If I get this data, what can Ido to improve it?
And if I'm confident that I canimprove it, we'll make this
(17:59):
person feel better.
There are so many steps inthere that we haven't figured
out with microbiome testing.
Forget the fact that if you getyour microbiome test from five
different places, you're goingto get five different answers,
right.
So the test itself is justunreliable.
So I get what people want toknow and this is one of those
things that I categorize in youknow, just to know.
But is it really going to helpyou?
And my answer is I'm not sureyet and I haven't seen any data
(18:22):
to suggest that it really helpspeople.
But I have, you know, I startedthis Instagram and I'm
interacting with a lot of peoplethat I otherwise wouldn't have
met, and people say it changedmy life and I said how?
And no one has given me ananswer yet.
I am so open to learning more.
I am not in this traditionalmedicine camp where I say it's
pseudoscience, it's made up.
I don't believe that.
(18:42):
I just don't know how to use it.
If someone can teach me how toreliably use it, because there's
no clinical data to say that itworks yet, I promise you, I'm
all ears.
I say this with just opencuriosity and wanting to learn
more and I'll say I use.
You know, I interact with a fewnatural doctors or naturopaths.
I said we use this all the time.
I said but how, how do we useit?
(19:03):
And you test it afterwards what?
How do you leverage it?
Do you use dietary measures?
Do you use probiotics?
Do you use exercise?
Do you sleep?
And I have.
I haven't really got an answeryet.
So I'd love to have thatdialogue with somebody one day,
if they're open to have it, yeah.
Speaker 1 (19:18):
So, speaking of your Instagram, tell us what your
Instagram handle is, so thatpeople can follow you, because I
think they should.
Speaker 2 (19:24):
It's DrZachSpiritos.
Speaker 1 (19:27):
There you go.
Okay, what is your biggestpiece of advice?
Before we move on to thequestion portion for you, what
is your biggest piece of advicefor patients who are struggling
to find their diagnosis, or oneof the biggest challenges you,
as a provider, have in helpingpatients with these challenges?
(19:48):
It's twofold.
Speaker 2 (19:49):
So yeah, so I think that I would.
I would catalog all of yoursymptoms, okay, and when you
bring it to it, if you choose togo to a doctor for this, I
would write it down in a verysuccinct.
This is what really bothers me.
I've done some research andthis is what I think it may be.
(20:10):
What do you think?
Okay, because it really andobviously go through the whole,
like you have to tell your wholehistory and go through
everything and let them come totheir own conclusions.
And if you guys are on the samepage, beautiful, okay.
But if perhaps they're like,maybe this is IBS, I'm like I
disagree.
You have to say, well, I thinkit's this, and if it's not this,
(20:33):
or you don't think it's this,can you tell me why?
And if that provider isn't opento that dialogue, then you have
to change teams.
And it's just as simple as that.
If you don't have a providerthat is open to a dialogue and
curious about what may be goingon, then they're just they're
not the right person for you,because, by nature, if you're
(20:54):
listening to this, you have acomplex, chronic illness, right,
and it's it's going to bechallenging, it's going to be an
ongoing effort between you andyour medical team.
So I really like when someonesays like this is what I have,
this is what's really reallybothering me, because I also
know that people's brains arecompletely washed when they go
to a doctor's office.
I went to a doctor a few timesthis year because I had some
heart stuff going on and Icompletely just forgot
(21:14):
everything when I went to gotalk to them.
And I'm in medical, it justhappens right and you're so
excited to get there.
They rush in right.
They're sweating becausethey've been seeing 20 patients
that morning and they're likethey haven't shaved or I don't
know if that's a guy, I guessyou know they're unkempt.
You're like, oh, this guy lookslike he's disheveled and I'm
trying to condense everything.
But a piece of paper, really,you know it anchors you to what
(21:37):
your reality is and what's beengoing on.
Speaker 1 (21:39):
Yeah, okay.
What are the challenges youface that patients should be
more aware of?
Speaker 2 (21:44):
Goodness, I mean, there's a lot really tough.
I'm trying really hard.
I think people get frustratedby the lack of progress
sometimes and the beauty of so.
I'm a neurogastroenterologist,which means that I deal with a
lot of invisible chronicconditions, and so there's not a
lot of data in this space, anda lot of my decisions and
(22:05):
therapeutic plans are based onwhat I think is an intimate
knowledge of pathophysiology andmedications and a good grasp on
the testing out there and so.
But it's not like hey, I brokemy ankle.
There's an x-ray of my brokenankle, you're going to fix it.
That's going to get me better Ahundred percent.
This is different.
It's a lot of.
It's certainly not guessing,but it's.
It's a we're, it's expertopinion and we'll.
(22:29):
I'm trying so fr freaking hard,I promise you, and we're going
to try.
And if this hits, awesome,right, we're not going to get
100% better in three months, but30% is what I'm looking for.
If it doesn't work, let me knowimmediately and we will pivot
and try something else, becausethis is an ongoing evolution,
right, and so this is invisible,right?
I don't have a test result tosay that's it, and unfortunately
(22:50):
, those tests don't exist,because a lot of this is based
in the nerves and dysautonomiawhich we, quite frankly, can't
test for the most part, and so,yeah, I just it's be patient
with the process, and we'relooking for getting 1% better
each day, as opposed to acomplete overhaul.
Speaker 1 (23:06):
Yeah, that's really good advice and that's something
that I think we all need tohear.
This is the portion of thepodcast that has been a favorite
, which is you get to ask me anyquestions you want, whether
it's patient-based or provider.
Oh, I know, just get excitedfor that because it may not be
good, but we'll see how it goes.
(23:27):
But you can ask any of thesequestions because you aren't
endometriosis specific, and so Ithink it's important for people
to hear things that otherproviders have as far as
questions go to the patient, andthis is kind of a reverse role
to play.
So let's go for it.
Any questions you have, I'mhere to see if I can answer them
(23:49):
you have.
Speaker 2 (23:53):
I'm here to see if I can answer them.
Bring it on, All right.
So what is the biggestmisconception about
endometriosis that doctors have?
And I think I've said probablythree or four things that I'm
sure in your head you're like.
That's just blatant false.
Yeah, yes and yes, you've got alot of incorrect.
Speaker 1 (24:07):
So one of the biggest things is the definition which
they are taught endometrium andit's not endometrium, it's
endometrium-like cells.
They are actually two differentcells.
They actually have researchbacking this up, that it is not
retrograde in the sense thatit's not the endometrium coming
out, flowing out, going into theabdominal cavity or the pelvis.
(24:29):
It is actually endometrium-like.
They're two different things.
Endometriosis produces its ownestrogen.
It's a crazy disease that ithas its own brain, it has its
own food source and it canprovide its own food source, and
so that's probably one of thebiggest misconceptions is that
it comes flowing out and it'sendometrium.
It's not.
They're different cells andthat's why it's been found all
(24:52):
over the body.
It's been found in the brain,it's been found in the nose.
It's been found there's morecases showing up cardiothoracic
diaphragmatic.
It's been found everywhere, andI think there's that's the
reason that it can be so complexto diagnose as well is because
depending on where it's locatedand how it's responding with
(25:12):
your nerves means that yoursymptoms are going to show
differently and you're going torespond to that differently.
Right, we've talked about thebrain and how that has such a
huge role in how we perceivepain and how we adjust to pain
right and in our environmentsit's highly inflammatory in
nature.
It's genetic in nature as well,which some people have a hard
(25:34):
time understanding.
That Dr David Redwine he was agenius at this, he really dug
deep into the genomic aspect ofit.
It tends to be verygenerationally induced.
So if someone in your familyhas endometriosis, you are seven
times more likely to have it.
So when I'm sitting here as apatient who's had deep
(25:57):
infiltrating endometriosis, Ihave two daughters.
They're likely to have it.
In fact, I would say this mydaughter, who is not yet on her
cycle, is showing signs in herGI in the way that I did, is
showing signs in her GI in theway that I did.
So we're seeing a lot ofgenerational endometriosis and I
don't know and this issomething that you know, I'm
(26:18):
going to talk to another doctorabout but I don't know why it
seems to be getting worse and Ithink maybe it could be
environmental.
It could be that we are in aheightened state in the
sympathetic system, more wearen't good at balancing our
sympathetic, parasympatheticsystem.
I think there's that role toplay in there, and Dr Mark
(26:42):
Possover, who is aneuropelviologist, talks a lot
about this and how we don't needto downregulate our sympathetic
, we need to up-regulate ourparasympathetic, because if
you're trying to raise thatsympathetic, it's so hard, it's
daunting, it's so hard to do.
But if you can increase yourparasympathetic, then that's
(27:03):
where it'll kind of be thatteeter-totter of leveling out,
if that makes sense.
So those are just some of thebiggest misconceptions that we
kind of face.
Also, hysterectomy will cure it.
It does not cure it.
Ablation gets rid of it.
It does not get rid of it.
Ablation really just cuts it atthe surface instead of taking
all the disease out.
It's like a cancer.
(27:24):
It grows like a cancer.
Take it from the root, and sothat's probably some of the
biggest misconceptions that wehear amongst others.
But those are some of thebigger ones that you will hear
time and time again if you lookonline or go to a doctor's
office fundamentally changesfrom what its origin was to
(27:54):
something different, and that'scomplete news to me.
Speaker 2 (27:55):
Yes, and then you said that your daughter is
having GI symptoms.
Do you find that GI symptomsare sometimes the canary in the
coal mine for endometriosis?
Can they occur before kind ofclassic gynecologic symptoms, or
how do you see that play out, Iguess the chronology of those
things?
Speaker 1 (28:15):
I do.
I absolutely do so when we'relooking at food sensitivity and
getting nauseous diarrhea tocertain food and you can track
that cyclically prior to theircycle, because we start cycling
before we have menstrual flow.
Right, that's our bodies, thehormones shifting and changing.
So as I'm seeing these shiftsand changes, I'm seeing her
(28:37):
become more sensitive to certainfoods.
I'm seeing that she's having aharder time going to the
bathroom.
She has more constipation andthen she also is.
She's always had a sensitivestomach, but I do think that it
has gotten progressively worseas she's starting to get into
that hormonal shift.
So I look back at my history andI don't remember a lot, but I
(29:00):
do remember having a hard timeas a kid with the GI symptoms.
Most people I talk to who havehad GI symptoms in their
diagnostic process figure it out.
A lot of it starts prior totheir menses.
So it's just something to behighly aware of and it's
something that a colonoscopy orendoscopy is not going to catch
(29:20):
because it's from the outsidegoing in.
So most of the time a lot ofpatients will have a colonoscopy
to try to figure out what'sgoing on and they're going to
say well, it's clean.
It's clean as a whistle Likethere's nothing there and and
then an endometriosis surgeonwill go in and they'll find, you
know, pretty deep disease inthe bowel wall and which you
(29:43):
know, or their rectum or their,you know.
So it kind of is prettyinvasive, but sneakily so
sometimes.
Speaker 2 (29:51):
Okay, tricky.
And so when someone hassymptoms, okay, and they are
concerned that this may beendometriosis, like the parallel
in my world is like and IBS isreally tough to diagnose, so
where do you start Right?
And then, if imaging which Iimagine imaging is rather
imperfect for picking upendometriosis, where does that
(30:12):
dialogue continue?
Is it just a clinical diagnosis, like I have these symptoms,
we've rolled out everything else, like it's got to be this, or
how do you, how will you informsomeone to start that
conversation with the doctor andstart that diagnostic journey?
Speaker 1 (30:23):
Yeah, well, I think what you said before is
listening right.
So as a patient, we as patientshave a responsibility to track
our symptoms and if we have ahard time, have a support person
that will help you.
Because I will tell you, myhusband picked up on way more of
my symptoms than I ever did.
He was able to pinpoint thetime of month that I was having
(30:45):
a hard time, like he would beable to see things that I
wouldn't, because I was in somuch pain, I was in debilitating
pain, and so he was picking upthat I was moody prior, like PMS
.
They say PMS if you're moody,that's a good indicator that you
know moody, plus maybe painfulperiods.
Periods should not be painful.
(31:06):
We've said that they're okay tobe painful, they should not be
painful.
Uncomfortable is one thing,painful is a whole nother thing.
If you are missing out on yourquality of life, if you're
having to cancel events or notbeing able to go to school, if
you're young, if you are havingreoccurring UTIs, things like
that, during your period, that'sa good indicator that that
(31:27):
could be endometriosis.
And so I think for a lot ofpeople, painful periods have
been normalized.
It's not normal and we shouldbe looking at endometriosis as a
culprit.
But if you're havingconstipation, diarrhea, more
food sensitivities during yourcycle or maybe during ovulation,
that's a good indicator puttingall of those together.
(31:49):
And then interstitial stessitisgets.
I can never say it right, butthat gets categorized often as
as something when it actually isendometriosis on the bladder.
So there's a lot that you canlook at.
Another thing that I thinkproviders could look at more is
the muscle.
I'm your most alana and this isendobattery charging your life.
When endometriosis drains,that's a good indicator that
(32:13):
it's on the utero-cycralligaments and that is not a
non-common place for it to be.
It actually is one of thenumber one places to be, so just
kind of seeing.
Okay, here's a checkbox ofthings that they're going
through.
This isn't just one or theother.
This is like this is a lotgoing on during specifically the
(32:34):
cycle, but if it's been goingon long enough, sometimes it's
all a month long.
So that's where it gets tricky.
The question on the imaging alot of OBGYNs will do imaging,
but it's usually they'll say, oh, there's nothing in there, we
don't see anything, there'snothing in there, we don't see
anything.
This is where an endometriosisspecialist is going to be the
(32:55):
best option for you if you wantto do imaging, because they can
do things like a sliding or adynamic ultrasound where they
can see.
So if you're looking at youruterus, your ovaries, and they
go to put the vaginal ultrasoundin and they're moving it, if
it's all moving together, that'sa good indicator that it's all
tethered together right, likethere's lesions holding that
(33:16):
together.
Now if it's moving separately,usually that's not an indicator
of deep infiltratingendometriosis, it's just, but
that doesn't mean that you don'thave it, because it could just
be minimal on the surface butstill painful.
It doesn't dictate the pain andthey can't do that in like the
utero sacral ligaments and stufflike that.
(33:36):
So there is imaging that youcan do, especially bowels.
They can tell on MRI and onultrasound If, if they're
experienced in what they'relooking for, general GYNs are
not experienced enough to dothat.
They're not trained how to dothat, and so these doctors all
they do is endometriosis and sothey're able to identify the
(34:00):
anatomy that's distorted, sothat they can say I'm 95% sure
you have endometriosis.
And again, it's hard to saydefinitively until you have a
pathological confirmation of it.
So long version, but that'sgenerally how.
Speaker 2 (34:20):
No, that's very helpful and it sounds like you
just need to find yourselfsomeone who's well-versed in
this and if you get negativetesting but you're like,
goodness, this is something isnot right, is to continue
looking.
It sounds like there arespecific GYN physicians that are
more savvy with endometrialdisease, so it's good to hear.
Speaker 1 (34:38):
It's very informative .
Yeah, yeah, and as a patient,you know we can't stop at one no
from a doctor and sometimes wecan't stop at seven.
I think the average providerswe see to diagnosis is roughly
12.
So that puts things inperspective a little bit and it
goes anywhere from GYNs, primarycare, to GI doctors to anything
(35:00):
kind of depending on yoursymptoms.
Now, those are only symptomsthat I talked about that are
more pelvic-related symptoms.
There's diaphragmatic andcardiothoracic and other things.
But yeah, that's generally whatpeople are going to deal with.
Speaker 2 (35:14):
Wow, Well thank you for being such an amazing
patient advocate and makingpeople feel heard when otherwise
their teams that should belistening to them or hearing
them may not kind of offer thatsolace.
So what you're doing is reallyamazing yeah.
Speaker 1 (35:30):
Well, I thank you for what you're doing and being
open to conversation andlearning about all the aspects
of medicine, not just whatyou've learned in school, but
opening up and expanding yourhorizons, if you will, to learn
more to help your patients,because it's obvious that you
got into this for the patientcare, not the paycheck, so
(35:55):
appreciate that.
Speaker 2 (35:56):
Oh yeah, oh yeah.
It's my pleasure.
I I've a lot of fun doing it, alot of challenges, but I learn
from patients every single day,and not only they're.
You know the pathophysiology ofwhat may be going on, but
they're just like how they'vebattled through all of this and
the resilience that comes with.
You know dealing with chronic,invisible conditions.
It just makes them so frickingtough and yeah, and, but they,
(36:19):
they deal with a lot.
People deal with a lot.
That's unfortunate, and Ialways make the analogy.
You know it's like.
Having one of these conditionsis like, you know, driving your
car on the highway and your carrattles and it shakes and you
take it to a car dealer Likeeverything's fine.
I don't know what you'retalking about.
Maybe you're driving it wrong.
Oh my God really.
And that's what I think youknow it's, and so I always you
know I give a lot of respect andadmiration to people dealing
(36:42):
with these conditions.
Hopefully you find the rightteam to support you.
Speaker 1 (36:46):
Yeah, and that is my hope for everyone the more
informed and more knowledge theyhave that they can find a good
team that helps support them.
We're going to have to do thisagain.
I'm sure I'm going to have morequestions at some point.
We'll have to answer some ofthese questions, but we'll have
to continue the conversation.
I love it.
Speaker 2 (37:02):
Anytime, anytime.
I had a great time.
Speaker 1 (37:04):
Until next time, everyone continue advocating for
you and for others.
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