Episode Transcript
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Speaker 4 (00:00):
What if endometriosis
isn't just a gynecologic
condition, but a whole bodyecosystem problem?
From the gut microbiome to thelymphatic and vascular systems,
we're uncovering how the body'snetworks may hold the clues to
why symptoms spread, persist,and often differ from each
other.
How would you define systemicdisease?
Speaker 2 (00:22):
This is the problem
of medicine.
We still work in silos.
When we think aboutendometriosis, doctors think
it's pain and fertility.
And the disease is beyond that.
When we do surgery, we thinkhealing is based on the surgical
metrics that the surgeonperceived.
She didn't bleed, we removedthe disease.
But endometriosis, when we talkabout multisystemic, when we do
(00:46):
a review of system, we look atthe eyes, the nose, the
breathing, the neurologic, themental, physical, everything.
Every system is assessed.
When we look aboutendometriosis, endometriosis is
beyond pelvic pain.
It affects the gut, it affectsthe lung, it affects the
breathing, it impacts mentalhealth.
(01:08):
So there are multiple systemsaffected.
So now you wonder, okay, whatis this guy saying?
Bacteria and voodoo science.
How does it work in real life?
So we know there is somethingcalled estroblem.
Estroblome is the metabolism ofestrogen.
Now, the uh bacteria, theopportunistic bacteria, they
(01:29):
produce what we callbeta-glucorin glucoronidase
deconjugating enzyme.
And this is a crazy name.
But what does it do?
This will impair thereabsorption and the recycling
of estrogen through the liver.
We call it enterohepatic cycleof estrogen.
What it leads to, it leads toan increase in estrogen in the
(01:54):
body.
And we know endometriosis is anestrogen-dependent disease that
leads to more uh inflammationand that leads to more pain and
then uh deeply infiltrativeendometriosis.
It's beyond only a surgery.
It's the endometriosistreatment is a
multidisciplinary,comprehensive, and that requires
(02:16):
an effort from a lot of otherparties, the different doctors,
different pelvicular therapists,holistic approaches to ensure
that the patient's quality oflife is restored in a healthy
way.
Because as surgeons, we do thesurgery, patient goes home, but
the patients probably deal withgas and bloating for a longer
(02:37):
period after their surgery.
So if you don't provide themsomething or help to restore
their normal function, we wouldbe suboptimally treating our
patients.
Patients with endometriosistend to have more gut
dysfunction, they are moreconstipated, they use overtly
some laxative to go to thebathroom, and that leads to a
major disruption.
(02:58):
And that disruption createsmore inflammation, and that
inflammation creates poor youknow, excreting of estrogen or
metabolizing estrogen that willput them at the hyper-estrogenic
states, and then there are alot of consequences on the
inflammation from that.
Speaker 4 (03:15):
Dr.
Gaby Moawad and I sit down todiscuss this and so much more.
So stick around.
This podcast is not asubstitute for medical advice,
(03:35):
but a supportive space toprovide community and valuable
information so you never have toface this journey alone.
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 Endo Battery, charging our
(03:59):
lives when endometriosis drainsus.
Welcome back to Endo Battery.
Grab your cup of coffee or yourcup of tea and join me at the
table.
Today's guest is someone who'struly changing the landscape of
endometriosis care.
Professor Gaby Moawad is aglobally recognized leader in
robotic surgery andendometriosis management.
(04:22):
He's a board-certifiedgynecologic surgeon and the
founder of the Center forEndometriosis and Advanced
Pelvic Surgery in Washington,D.C.
Dr.
Mawad has dedicated his careerto advancing minimally invasive
and robotic techniques,combining surgical innovation
with deep, compassionate,patient-centered care.
As director of roboticgynecologic surgery and
(04:44):
associate professor at GeorgeWashington University, he's
trained surgeons worldwide andhelped redefine how we approach
complex pelvic disease.
He's been named Top Doctor inWashington, D.C.
for nearly a decade and hasauthored over 125 peer-reviewed
publications leading globalconversations on endometriosis
(05:06):
and surgical innovation.
It's an honor to sit down andwelcome a true pioneer and
advocate for better outcomes forwomen everywhere.
Please help me in welcoming Dr.
Gaby Moawad.
Thank you, Gaby, for sittingdown with me today and coming
all the way to beautiful FortCollins to spend time with us
and go over all the things thatI have a burning question about.
(05:30):
But one of the burningquestions I want to start with
is what made you so passionateto continue educating and
educating yourself withendometriosis and pursuing
greatness in endometriosis?
Speaker 2 (05:42):
First, before I
answer your question, I want to
thank you and thank you for allthe work you do through
Endo village.
It's great that we haveadvocacy groups like you being
able to change the paradigm inpatients' understanding and
patient education.
The answer to your question isa little bit complex.
You know, every everythingstarts from lifetime experience,
(06:04):
a personal journey.
So through my encounters withhealthcare as a patient before I
became a doctor, I realizedthat listening to a patient and
the trust in healthcare is atthe core of the value of the
care that we provide topatients.
So whenever patients aredismissed, whenever patients are
(06:28):
gaslit, that leads to poorcare.
And when I went throughgynecology, I was appealed by it
because it involves intricatesurgical skills that can help
making a change in the qualityof life of patients.
Through my journey, my studies,and then my fellowship in
minimally invasive surgery, Irealized there is a subset of
(06:50):
patients, patients withendometriosis or with chronic
pain.
This subset was poorlyunderstood.
And for me, it was like apuzzle.
Puzzle that made me delve intodeciphering that code and
understanding better how we canprovide a better care for this
subset of patients.
(07:11):
That led to educating myselfmore about the disease, more
about the impact of the disease,and then how can we provide a
better quality of care for thissubset of patients?
And in addition to that, thechallenges, the surgical
challenges that endometriosisposes for a surgeon requires
extensive training andstandardization of the surgical
(07:34):
care to have better and superioroutcome for patients.
All in all, here I am, 15 yearsafter still dealing with my
favorite group of patients,endometriosis patients.
Speaker 4 (07:49):
And we thank you for
that because it's not an easy
population.
Something we've talked aboutbefore is that there is this
isn't brought up in medicalschool that often.
This is not something that youlearn a lot about in medical
school.
So for you to continue in thatpath of educating yourself and
what we're going to get into isastonishing.
Like I'm always blown away byyour knowledge and the way that
(08:11):
you dig deep into endometriosisand how to help your patients
and patients worldwide, not justyour patients, but everyone.
It's just astonishing.
Speaker 2 (08:19):
Well, I think if we
go back to the basics of
medicine, the main importantrule of medicine is do no harm.
Speaker 4 (08:27):
Right.
Speaker 2 (08:28):
Do no harm is very
deep because we're doing
indirect harm by dismissingpatients.
And the harm does not need tobe physical, it's psychological
harm.
Most of the patients withendometriosis are impacted by
mental health problems becauseof these situations that we
(08:49):
indirectly, with our poorunderstanding and poor knowledge
and dismissal of patients, leadto this harm.
So every doctor shouldunderstand the value of referral
patients that they do not knowor they don't understand their
conditions, because there are aspecialist, they could maybe
provide a better care and notkeep the patient for the sake of
(09:13):
having a patience or having athriving business rather than
referring the patients to aspecialist, and this way they
will be completing their oath ofdo no harm.
Speaker 4 (09:25):
Right.
One of the things that's notwell understood, I think, for
most OBGYNs is the fact thatendometriosis is a whole
systemic disease.
How would you define systemicdisease?
How would you phrase this tolet people know like this is
systemic and this is whatsystemic means?
Speaker 2 (09:43):
This is the problem
of medicine.
We still work in silos.
When we think aboutendometriosis, doctors think
it's pain and fertility.
And the disease is beyond that.
When we do surgery, we thinkhealing is based on the surgical
metrics that the surgeonperceived.
She didn't bleed, we removedthe disease.
But endometriosis, when we talkabout multisystemic, when we do
(10:08):
a review of system, we look atthe eyes, the nose, the
breathing, the neurologic, themental, physical, everything.
Every system is assessed.
When we look aboutendometriosis, endometriosis is
beyond pelvic pain.
It affects the gut, it affectsthe lung, it affects the
breathing, it impacts mentalhealth.
(10:29):
So there are multiple systemsaffected.
And this is when we saymultisystemic disease, because
that disease is beyond thepelvis, is affecting multiple
systems in the body.
Speaker 4 (10:41):
Yeah.
I mean it affects everything.
Whole life.
My motto, whole body, wholelife, disease.
Speaker 2 (10:48):
You know, I'm gonna
spill a secret.
I was not the same doctor fiveyears ago or ten years ago.
If I will be the same doctorfive years from now, that means
I would be failing myself and mypatients.
So we have to do a continuouslearning, especially about the
area of expertise or our nicheor the stuff that we treat.
(11:08):
And this will enable us toserve better our patients, to
understand better the disease,and to contribute better to
research and emerging therapies.
Speaker 4 (11:18):
Yeah.
And we should always strive forbetter.
Speaker 2 (11:20):
Yes.
Speaker 4 (11:21):
I mean, as a patient,
we should strive for better and
expect better.
Speaker 2 (11:25):
That's why you have a
crucial job of educating and
empowering patients withendometriosis through advocacy
group so they can choose betterand they can enforce the
paradigm change and push doctorsto learn more and then serve
them better and then help themwith their disease to improve
their quality of lives.
Speaker 4 (11:46):
Yeah.
It's it's invaluable tocontinue talking about it, but
also pushing for better care foreveryone.
And I think that's somethingthat I have really focused on is
making sure that when Icommunicate, it's not just for
me, it's for everyone.
Because it takes the wholevillage, as you know.
Yes, yes.
Part of understanding um endoand its systemic nature and the
(12:09):
ecosystem is understanding howit affects our whole body.
Can we go into how it affectsour microbiome?
Because this is a big topicthat's been talked about
recently.
How do we know about the way itaffects our gut vaginally, all
of that?
What is the microbiome, firstof all, and how does it affect
us living within triosis?
Speaker 2 (12:28):
So microbiome is a
group of bacteria that coexist
together and survive in the bodycavity mainly, the gut, the
mouth, the vagina.
And then any disruption of thatmicrobiome, we call it
dysbiosis.
When there is a problem in thenumbers of bacteria, the
prevalence of certain bacteria,the absence of certain bacteria,
(12:52):
that leads to a lot of issues.
So what we know uh from humanstudies, and I'm gonna stratify
between the gut, the oral, andthen the vaginal, uh, the gut
microbiome, there are a group ofbacteria that are called alpha
taxa.
Taxa is a group of bacteria.
They are reduced in the gutendometriosis.
(13:12):
And then the opportunisticbacteria or bacteria like
enterobacteria say, this is agroup of bacteria, prevotella,
there are more prevalent in thebody.
And that has been correlatedwith pain and severity of the
disease.
Now, we go to the vagina.
In basically all the study,there has been a decreased
(13:34):
number of lactobacilli.
Lactobacillus is a bacteriathat is present in a healthy gut
and then that's transmitted tothe vagina.
And then the bacteria that arethat causes in many patients
bacterial vaginosis or smellydischarge are more prevalent in
the vagina in patients withendometriosis.
(13:55):
And then some of those bacteriawe know Gardnerella, Prevotella
as well, these showed that theycorrelate also with the
inflammation and the presence ofendometriosis lesions.
When we talk about the oralmicrobiome, we know that in
patients with endometriosis,they have more gum issues.
A lot of patients withendometriosis have bleeding gum,
(14:17):
they have peridontitis.
And this was this disruptionwas associated also with more
inflammatory markers that we candetect from the saliva in
patients with endometriosis.
So now you wonder, okay, whatis this guy saying?
Bacteria and voodoo science.
How does it work in real life?
So we know there is somethingcalled estroblome.
(14:40):
Estroblom is the metabolism ofestrogen.
Now, the uh bacteria, theopportunistic bacteria, they
produce what we callbeta-glucorin uh glucorinidase
deconjugating enzyme.
And this is a crazy name.
But what does it do?
This will impair thereabsorption and the recycling
(15:02):
of estrogen through the liver.
We call it the enterohepaticcycle of estrogen.
What it leads to, it leads toan increase in estrogen in the
body.
And we know endometriosis is anestrogen-dependent disease that
leads to more inflammation andthat leads to more pain and then
uh deeply infiltrativeendometriosis.
(15:23):
We go on the other end, thoseopportunistic bacteria, when
they break down, they producesubstances like LPS or
lipopolysaccharides, and thosepromote inflammation as well and
promote the aggressiveness ofthe lesions of endometriosis.
And even in some studies, theyfound DNA of bacteria in
(15:46):
endometriotic lesions.
So there is a clearcombination.
Now go back to also the goodbacteria produces what we call
short chain fatty acids.
And those short chain fattyacids can help protecting the
gut barrier.
So that's why we have leakyguts in the presence of the
(16:08):
opportunistic bacteria and theabsence of those bacteria that
produces those.
So these substances alsopromote further inflammation and
it will become a cycle.
So these are some of thereasons why the gut is extremely
important and the microbiome isextremely important in reducing
(16:28):
the inflammation and decreasingthe progression and the pain in
endometriosis.
Speaker 4 (16:34):
Sounds really complex
though.
Speaker 2 (16:36):
It's not it's not
really complex, but when we
break it down and simplify it,we know there is a link.
And then we know in a lot ofstudies, even though the studies
need to be bigger and morestronger studies to try to
identify different subtypes ofendometriosis that would be
affected.
Because as I mentioned, thisbiosis or the imbalance of the
(17:00):
bacteria could lead to theincrease the disease burden and
the pain and theinfiltrativeness of the disease.
But the the studying thegenetics, how we treat the
bacteria, probiotic,antibiotics, or even some
enzymes that can help promotingthe balance of the bacteria we
(17:22):
have in our body.
So that's why I encourage a lotof patients not to take here
and there any medications, notto do all those enemas sometimes
because they have a gutdysfunction, because these help
flush the good bacteria, and oneof the hardest things to
restore is the microbiome.
Restoring the balance takes alonger period of time.
(17:44):
We see now we introduce in ourpractice as part of the recovery
a gut recovery protocol becausewe believe it's beyond only a
surgery.
It's the endometriosistreatment is a
multidisciplinary,comprehensive, and that requires
an effort from a lot of otherparties, the different doctors,
(18:06):
different velvicular therapists,holistic approaches to ensure
that the patient's quality oflife is restored in a healthy
way.
Because as surgeons, we do thesurgery, patient goes home, but
the patients probably deal withgas and bloating for a longer
period after their surgery.
So if you don't provide themsomething or help to restore
(18:28):
their normal function, we wouldbe suboptimally treating our
patients.
Speaker 4 (18:32):
How could
microbiome-based therapies
realistically be implemented inmetriosis care?
Speaker 2 (18:39):
So again, as I said,
the microbiome, now we
understand more on themechanism.
Some of the proposed therapy,as I mentioned, targeting the
opportunistic bacteria or thebad bacteria, trying to
reinforce the action or restorethe good bacteria with
probiotic, for example,antibiotics try to kill the bad
(19:00):
bacteria.
Now, also targeting, I thinkthe treatment is beyond maybe
using some gene sequences ofbacteria to diagnose the disease
or diagnose the severity of thedisease or identify subtypes of
the disease that would causemore imbalance or dysbiosis.
(19:20):
So these combined efforts thatwe still need to understand more
the accurate impact and thedifferent subtypes of
endometriosis that could benefitfrom these kind of therapeutic.
Speaker 4 (19:35):
Would antibiotics
play a huge role in this?
Because a lot of patients whohave endometriosis are
constantly put on antibioticsbecause they're told they have
UTIs or they have who knows whatelse, right?
We get all the diagnosis thatyou can think of.
Does this impact thatsignificantly?
Speaker 5 (19:52):
Yes.
Speaker 4 (19:53):
Therefore increasing
the inflammation, the growth of
endometriosis.
Like it seems like it's a wholerabbit wheel of or hamster
wheel of it.
It's a vicious circle.
Speaker 2 (20:03):
Yes, yes, of course.
And that's why we know thatdisrupting that microbiome,
whether through unnecessaryantibiotics, whether through
unnecessary intervention, youknow, when you do endometriosis
surgery or when you do sometimesan MRI, some patients are given
laxatives.
Patients with endometriosistend to have more gut
(20:24):
dysfunction, they are moreconstipated, they use overtly
some laxative to go to thebathroom, and that leads to a
major disruption.
And that disruption createsmore inflammation, and that
inflammation creates poorexcreting of estrogen or
metabolizing estrogen that willput them at a hyper-estrogenic
state, and then there are a lotof consequences on the
(20:46):
inflammation from that.
So it's all a vicious circle.
That's why I believeendometriosis patients or
endometriosis suspected patientsneed to at least see a
specialist so they can create astrategy, a long-term strategy,
a comprehensive strategy fortheir care.
Because the care is beyondsurgery, is beyond birth control
(21:08):
pill, is beyond any uh of theseinterventions.
It's more of a total bodyintervention.
Speaker 4 (21:16):
I think that's
something that we struggle with
though, because most of the timewe don't feel good on top of
all of these other things thatwe're going through.
So to rebuild or to make ourgut feel better is a chore.
It's a challenge.
Speaker 5 (21:28):
Of course.
Speaker 4 (21:29):
So that's what is
challenging from the patient
side is it's a constant trialand error for us.
And it's we work so hard tojust try to get to feel a little
bit normal, to understand thegut and uh working with someone
that can understand your gutmicrobiome better, I think could
help us in the long run.
Speaker 2 (21:46):
Yes, yes, definitely.
Speaker 4 (21:47):
So we've talked about
the invisible microbiome and
shaping and everything else fromthe disease.
Let's shift into somethingthat's a little bit more
visible, blood vessels.
And we're gonna go into bloodvessels and lymphatic pathways
and how they might actually feedor spread with endometriosis.
Speaker 2 (22:05):
Well, if you you're
looking for complexity, here's
your complex answer.
So there are there are a fewsubstances that I think every
endometriosis patient should atleast try to remember some names
or understand what they do inendometriosis.
Every endometriotic cell needsoxygen to grow, needs nutrients
(22:26):
to grow, and then needs bloodvessels to evacuate their waste.
This is part of almost everycell in the body rather than
endometriosis cells only.
So in endometriosis cells,there are what we call VEGF,
vascular endothelial growthfactor, and then VEGF receptors.
(22:47):
So there is a more higherprevalence of VEGF that help
producing what we callangiogenesis and vasculogenesis,
angiogenesis creating new bloodvessels.
So those lesions, because ofthe scarring that happens, they
are in a hypoxic state or pooroxygen comes there.
So they develop what we callhypoxia-induced factor, HIF
(23:11):
alpha.
That what this produces, itupregulates the receptor to
attract more VEGF to producemore blood vessels.
So that CIF is a substance thatsays, I don't have any vessels
coming to bring me oxygen, solet's bring in more of the
vascular endelial growth factor,so they produce more blood
(23:33):
vessels.
Now, in addition to that, theinflammatory mediators,
interleukin A, tumor necrosisfactor, they also promote
inflammation and increase theVEGF in the endometriosis cells.
So you can see how the circlesis doing things, and the
estrogen is present in highconcentration in endometriosis
(23:55):
lesions because there is thearomatase.
They produce their ownestrogen, the endometriosis
cells.
Now add to this through allthat concoction, there is what
we call MMPs.
This is metalloproteinase.
These are substances that breakdown the matrix around the
cells for endometriosis, breakdown those proteins to create
(24:18):
space for blood vessels to form.
So now we see all those bloodvessels have space to form, they
start forming.
And we can see a higher densityeven on imaging of
endometriosis lesions when we dothe contrast on MRI, they're
hypervascularized.
Now, throughout that wholemedium, what happens?
Those inflammation startpromoting the bone marrow to
(24:41):
produce EPCs, EPC endothelialprogenitor cells.
So these are cells that comeand cheerlead the formation of
vessels.
So you have a higher number ofthose cells, so everybody is
engaged to produce more vesselsin the endometriosis lesions.
Then we do say, oh,endometriosis lesions bleeds.
(25:04):
Why?
Because there is on every bloodvessels a lining of cells.
We can call them pericytes.
Peri means near, they lines,those sites mean cells, they
line the blood vessels.
So there is an immature supportof those pericytes.
That's why those blood vesselsare leaky, and that's why they
(25:26):
tend to leak blood outside, andthat's what they bleed.
So you can see how thatangiogenesis or the formation of
blood vessel is led byinflammation, by
hyperestrogenism, localhyperestrogenism in the lesions,
by all those substances createdto promote from the body, from
the bone marrow, to promotefurther formations of immature
(25:50):
cells that leads to bleeding andthen engage further the body to
inflame more.
Speaker 4 (25:55):
Is that why we get
variation in color for the
lesions as well?
Speaker 2 (26:00):
Yes, yes, yes, yes.
Speaker 4 (26:02):
And you know, we hear
about the powder burn lesions,
but there's also a rainbow ofcolor in lesions.
Speaker 2 (26:08):
So when the blood
leaks from those vessels, it is
digested by the enzymes, andthey're part of the metabolites
of the digestion is hemosiderinand they deposit there and it
gives the color of purple orpowder burn lesion.
And then you can have atdifferent level vascular or
scarring because whenever youproduce inflammation, your body
(26:29):
reacts to scarring.
And since we have an immunedysfunction with endometriosis,
so the scarring is there is anover-reaction to the
inflammation with extensivescarring.
Speaker 3 (26:40):
Yeah.
Speaker 2 (26:41):
So it's mostly really
well understood on the
molecular level.
And this is help us a lot intrying to figure out therapeutic
approaches.
So there have been trials thatdid target the VEGF or
anti-angiogenic therapeuticmedication.
These showed promising results,but they led to poor wound
(27:04):
healing, and then their impacton fertility is unknown.
So further study maybe aboutthe delivery method of those
substances, maybe directdelivery through the lesions,
might help improving withminimizing the systemic side
effects.
So when we understand what'scausing what, we can further our
research to try to help throughtargeted therapies or cellular
(27:28):
therapies for endometriosis.
Speaker 4 (27:31):
So fascinating.
Does this also contribute,though, to what many call like
the pelvic floor congestion,where the blood vessels are
overactive in there or no, thepelvic floor congestion is from
the mostly from the cytokines.
Speaker 2 (27:45):
So the cytokines, the
interleukins could produce
dilations of the vessels.
And then where is an overlyinflammatory activity there that
could lead to a dilation of thevessel, furthermore, to
exchange those, bring in thesoldier that fight inflammation
and take away the uh substancesor the metabolites of
inflammation.
It's also more correlatedbecause we see on MRI the higher
(28:10):
density in vessels.
You know, now with machinelearning and artificial
intelligence, maybe these couldhelp as a markers of diagnosis.
Unfortunately, there's nostandardization of the intensity
of the signals yet.
So there are a lot of workbeing done behind the scenes on
these kind of moleculartherapies or targeted therapies
(28:33):
through precision medicine tohelp create a hope for future
treatment of endometriosis.
Speaker 4 (28:39):
It's interesting that
we're thinking about treatment
of endometriosis through avascular pathway, because I
would have never even thought ofthat.
Speaker 2 (28:46):
Because every cell
like needs food to grow, needs
nutrients, needs oxygen, andthen needs to discard their
waste because the waste aretoxic for the cells.
Speaker 3 (28:56):
Right.
Speaker 2 (28:57):
So whenever these we
can cut the supply to those that
would lead to uh cell apoptosisor death.
Speaker 4 (29:05):
So fascinating.
I would I just and that I'venever put that together.
Like it's not something thatmost people even think about.
Speaker 2 (29:11):
When we this is
extremely important because when
we understand the diseasebetter, we can understand its
impact, we can start thinkingabout the different ways of
therapeutic approaches, we canunderstand more how we can help
treating that.
So endometriosis is beyond,yes, I have pain or pain during
(29:33):
the period is not normal.
We all do agree on that, andthis is an important part.
But caring for endometriosispatients requires a further
delving into the depth and themechanisms of the disease to
help contributing in theunderstanding and explaining the
disease and helping to empoweryour patients to understand
their body better and providethem better therapeutic
(29:56):
approaches.
Speaker 4 (29:57):
I'm just blown away.
You just like something I Nevereven considered, so I'm excited
that we're talking about this.
What evidence is there forlymphatic involvement with
endometriosis and the spread ofendometriosis?
Speaker 2 (30:09):
Same thing.
Uh, there are a lot of studiesthat showed the presence of
endometrial-like cells withinthe lymphatics, the presence of
estrogen and progesteronereceptors within those cells in
the lymphatics that would makeus understand how the disease
can be transmitted.
And in animal model, it wasproven that the disease can be
(30:33):
transmitted through distantorgans.
That would explain thatendometriosis is beyond the
pelvic disease.
It could be transmitted todistant organs like the
diaphragm, the lung, the brain,anywhere you believe, through
the lymphatic channels.
So it's not like something wereally need to demonstrate.
It was proven that this couldbe one of the theories of
(30:55):
distant endometriosis spread.
Speaker 4 (30:57):
This is very similar
to the way they even test for
cancers, which is ironic giventhe fact that endometriosis is
not treated with the samerespect as like a cancer would
be in treatment and approaches,surgical and otherwise.
I think it's fascinating thatwhen we're looking at the
lymphatic aspect of this, thatwe blow over the fact that it's
(31:18):
very similar in regards to theway that cancer can progress.
Speaker 2 (31:22):
For me, I I think the
medical community needs to
understand what appeals a lot ofpeople to the cancer stuff is
the fact there is the deathhalo.
Speaker 4 (31:34):
Right.
Speaker 2 (31:35):
But death is not
physical only.
Speaker 4 (31:38):
Yeah.
Speaker 2 (31:38):
A lot of patients are
dead in their relationship, are
dead in their physicalactivity, are dead in their
mental health.
So we don't need to losesomebody physically to start
putting more money onto theresearch.
It's very important.
But also we should look atwhatever incapacitates our
patients from doing dailyactivity and they will become
(32:02):
socially dead, emotionally dead.
And this is for me somethingthat should be an alarm for all
the medical community to opentheir eyes and to try to find
funds to improve the researchand the care of endometriosis.
Speaker 4 (32:19):
Yes.
And I I mean, we can get intothis in another time, but one of
the things that I've alwayssaid is that you can't
specialize in something ifyou're trying to specialize in
everything.
And that's where I don't wantto go to someone who doesn't
specialize in such a complexdisease when they know only a
half a day in medical schoolfrom it or what they hear
(32:41):
through Google.
You know, like I want theresearch behind it too.
I want to know that my provideris well informed and this is
all they deal with.
Speaker 2 (32:49):
I I think we need to
start with a major definition,
what is an expert?
Because now an expert is aloosely used term.
And then that is misleading alot of patients.
Expertise is beyond only justdoing one thing, because you can
do the same thing all the time.
You become a technician if youdon't understand it.
Speaker 5 (33:10):
That's true.
Speaker 2 (33:10):
And I think
expertise, you can be an expert
in a surgical procedure becauseif you do it over and over.
But whenever it comes toendometriosis, the expertise
should emanate not only from thesurgery, but from understanding
the disease, from trying tohelp publishing and increasing
the global understanding of thedisease.
(33:31):
It's not how much followers Ihave on Instagram that makes me
an expert, or how many posts doI post on Instagram makes me an
expert.
The expertise is beyond that.
It it encompasses amultifaceted learning and skill
acquiring and training and thenknowing how to create strategy
for patients that would involvea multidisciplinary and a
(33:53):
comprehensive approach.
And when we saymultidisciplinary, we think only
about the multidisciplinarysurgical aspect.
I have a colorectal and I havea urologist on board, and then
that means I domultidisciplinary care.
No.
Speaker 4 (34:08):
Right.
Speaker 2 (34:08):
Multidisciplinary
care starting from providing the
patient coaching and supportthrough life, trying to explore
functional medicine capabilitiesin helping patients, continuing
with gut recovery protocols,helping the patient through
mental health, cognitivebehavioral therapies, helping
(34:29):
the patient through pelvic floortherapy, long-term follow-up
with patients.
This is a multidisciplinarycare.
It's outside the OR.
And the OR is extremelyimportant, but it expands.
Outside the OR, it expands tomuch more specialties beyond a
colorectal or urologist.
And this is multidisciplinaryand comprehensive care.
Speaker 4 (34:51):
Well, because we're,
as we've talked about, it's a
whole body issue.
And so we're only addressingone area.
There leaves room for morebreakdown within your body.
I mean, I just I this issomething that I've learned in
my journey with endometriosis.
I was very much presented thatendometriosis was, you know, you
(35:11):
can do X, Y, and Z and get ridof it.
But no one ever touched on themental aspect of it, the
emotional aspect of it, therelational aspect of it, which
you need someone that can helpyou navigate that and someone
that's specialized in chronicillness or trauma therapies.
And then you also have, youknow, relational therapies that
suffer from this.
(35:32):
And so if you don't addressthose, you're gonna always feel
in this state of fight orflight, you know?
I think that I really think alot of it, we do have to address
like the emotional component toit, the mental component.
Speaker 2 (35:45):
What does emotion do
to you?
What does stress do to you?
Emotion is a stress on yourbody.
Absolutely.
Stress increases your cortisol.
Cortisol is a pro-inflammatoryhormone.
Right.
So you're inducing moreinflammation that worsens your
pain.
This is a vicious circle, comesback to the same thing.
More inflammation, more pain,more disease, more impact on
mental health.
So everybody is living intothat vicious cycle that someone
(36:11):
needs to break.
And now this is a message forendometriosis patients.
The the treatment isfrustrating of endometriosis,
because the treatment is long,sternuous, time consuming,
effort consuming.
So I will encourage a lot ofpatients with endometriosis to
create a strategy, a long-termstrategy with their doctor.
(36:32):
Because this is what minimizesthe unnecessary intervention,
the fragmented care ofendometriosis patients, is when
somebody put a strategy and thenall the parties of the care
team can work through thatstrategy.
Because if you've ever beentold that the surgery is the
only treatment forendometriosis, probably they're
(36:54):
missing a big part of the story.
If you're ever told that allyour problems will go away,
endometriosis impacts a lot ofsystems in the body, and that
impact is irreversible in theabsence of the disease.
We need to intervene to restorethat impact.
When you break your leg, theytake an x-ray, they say, Oh, you
(37:14):
look fantastic, your leg heal.
You cannot go run a marathon.
There needs to be a lot oftraining, a lot of rehab to be
able to get back to the samepace and be able to run them.
And this is the same.
Endometriosis is a lifemarathon for the patients.
Find a good coach that willwalk you through that training
so you can be able to dowhatever you want to do and
(37:37):
restore your quality of life.
Speaker 4 (37:38):
The other thing I
would say to that though is that
that coach can change indifferent stages of your
journey.
Of course.
And I think it should at somepoint because you don't want to
be seeing someone and doing thesame thing over and over again
with minimal to no results.
That's when it's okay to lookfor someone new.
And I think that we get sostuck in being loyal to those
(38:01):
who we first find and we haverelationship with.
And I'm not saying that youneed to sever your relationship.
I'm just saying it's okay tofind someone that will serve you
better.
Speaker 2 (38:10):
No, no, I completely
agree with you.
That's why I believe educatingthe patient about the long-term
strategy is the most powerfultool because they can understand
what they should do, what isthe next step rather than I've
done this, but no result.
What should I do next?
Speaker 4 (38:25):
Yeah.
Talking about all of that, andwe've talked about it being a
whole lifelong journey and goingback to the lymphatic pathways,
if those are involved, doesthis change how we think about
reoccurrence?
Speaker 2 (38:38):
Reoccurrence is like
you get me started on the most
complex topic.
Reoccurrence is a very complexissue.
Reoccurrence is is extremelypoorly understood.
Because when we do research onendometriosis, we do research on
endometriosis as a whole.
We don't have any subtypes ofthe disease, we don't have any
(39:00):
yet well-establishedunderstanding of the phenotypes
of the disease.
How does the disease expressit?
How is it why is it deeplyinfiltrative in you?
Why does it affect the bowel inyou?
Why doesn't it affect severityof the disease, the genetics and
the gene expression ofeverybody?
Also, like the completeness ofyour therapy, your therapeutic
(39:21):
approaches plays a role inpersistence rather than
recurrence, but we call itrecurrence most of the time.
So it's a multifaceted complexsituation.
Yes, definitely, lymphaticcould play a role, inflammation,
understanding the inflammation,the immune system plays a
tremendous role in that.
So it's a it's amultifactorial.
Most of the stuff cannot beanswered as of now by one theory
(39:46):
or by one causality equation.
So there are multiple factorsthat come together that we still
poorly understand that couldincrease the chances of
recurrence for some patientsversus not for other patients.
Speaker 4 (39:58):
Yeah.
It's it's and I think that weoversimplify it sometimes in
saying if you just get the righttreatment, if you just get the
right surgeon, then you won'thave any recurrence.
And that's just not true.
We're too complex for that.
Speaker 2 (40:13):
No, it's you know,
there are multiple inter
interventions that we can do,but the most important thing is
trying to educate the patient.
Because patients, when we talkabout recurrence, patients
understand there is no cure forthis disease.
And patients understand thereis a chance of recurrence.
But trying to help improvingthe quality of life and
(40:34):
minimizing the unnecessarysurgery is something, is a goal
that could help tremendouslyimpact their quality of life.
So if a patient require anothersurgery in five years or ten
years, but in the interim timethey had a very good quality of
life, patients are completely onboard.
(40:56):
They understand really wellthat.
But if a patient has to dosurgery every six months and
most of them are unnecessary oremanate from the poor
understanding of the disease orpoor implementing of long-term
therapeutic or uh approaches,this will lead to a lot of
frustration and this will leadto a lot of changing doctors.
(41:17):
And so the most important thingwe can do as a healthcare
provider, advocacy group, is totry to educate the patients
about the real reality of thedisease.
Speaker 5 (41:30):
Yes.
Speaker 2 (41:30):
Rather than taking
patients' emotional
vulnerability to provide them acheerleading support.
Patients with endometriosis,they need more understanding.
They don't need cheerleader.
Cheerleading is sometimesimportant.
But simplifying endometriosis,to go, girl, be strong, that
kind of approach, which is, Iagree, it's important to lift up
(41:54):
people sometimes.
But the most empowering comesfrom trying to understand the
disease and explain it to thepatient, trying to understand
their body, trying toindividualize their treatment,
trying to provide them alonger-term strategy, how they
can cope with such a disease.
Speaker 4 (42:13):
Right.
That's something that I didn'thave.
It was a good explanation whenI started.
And I think part of advocacy isbeing aware of your role in
helping people find a betterquality of life.
Again, cheerleading is greatand validation is wonderful.
Of course.
But at the end of the day, ifyou don't have steps moving
forward, you're not going to geta better quality of life.
(42:35):
If you don't have the supportto say, have you looked at X, Y,
and Z as a way to help X, Y,and Z is very different for
everyone.
But I think that's wherecommunity matters.
That's where stepping into aspace where others have lived
experience can make a hugedifference in the way that you
navigate a disease that consumesso much of our lives and so
(43:00):
much of our stories.
But it doesn't have to all thetime.
That's the other thing.
Speaker 2 (43:04):
And I say it all the
time, but the trust is
established at the beginning bylistening and validating.
This is something that shouldbe done.
But beyond that, the work willstart by educating, empowering
through science, throughevidence, through different
therapeutic approach.
And the support continues byproviding a longer term
(43:29):
strategies for patients withendometriosis.
Speaker 4 (43:31):
Yeah.
And the more we look at it thatway, the better we'll be.
Because we'll be able to figureit out and have steps in place.
I know I have I always thoughtthis is where this is what was
so frustrating in this disease.
I thought once I had surgery, Iwas gonna be good.
I'd magically wake up and behealed.
And I wouldn't have any otherissues.
(43:53):
I wouldn't have any pain.
And the mental toll and theemotional toll it took on me to
realize that that wasn't goingto be the case for me was really
hard.
But when I came to terms andrealized that there was a
community there to support mewho understood me, it has
changed so much.
And I think it changes yourhealth outlook too to have that,
to have a good team behind you,have providers who believe you,
(44:17):
who have providers that don'tlook at you as if you're crazy
when you tell them really weirdthings that happen to you, you
know?
And so I think it does make ahuge difference.
But to go into thatrealistically, what does this
disease realistically look like?
You know, and I think that'swhen we talk about all these
different variations and facetsof it, it's to bring evidence
(44:38):
and to inform so that you don'thave this false sense of hope.
Speaker 2 (44:42):
Because you know, if
you're gonna break down
gaslighting, could be directly,gaslighting could be saying
like, oh no, you don't haveanything, you're crazy, but
could be indirectly by givingyou the false hope or by giving
you the wrong information.
Speaker 4 (44:56):
Yeah, absolutely.
Speaker 2 (44:57):
So gaslighting is not
always intentional.
Yes, it is sometimesunintentional by creating a
certain excuse to prove to yourpatients you understand more
about medicine, and then thisimplementing wrong information
in your patients, making themdisbelieve the reality
(45:21):
sometimes, and then that willcreate either further
therapeutic challenges with thepatients when they understand an
idea that was given by a randomdoctor.
Because for me, when I go tothe doctor, whatever they tell
you impacts you far more to whatthey believe they say.
They forgot what they said.
But the idea that I can carrythrough years is the idea that
(45:46):
continues to gaslight me ortorture me if it is based on
erroneous or false information.
Speaker 4 (45:52):
Yeah.
Which is something I never evenI didn't even hear the word
gaslighting until like, youknow, three years ago.
Speaker 5 (45:58):
Yeah.
Speaker 4 (45:59):
It wasn't as it
wasn't, but I wish I would have
known that it wasn't always myfault.
You know, I wish I would haveknown.
Like it is based on with goodintentions.
Like my my provider had goodintentions, but bad information.
So I think that there's so muchto play in patient care.
It's not, it's not linear.
Speaker 2 (46:18):
It's okay to tell
your patient, like, I don't
know.
Speaker 4 (46:21):
Yeah.
Speaker 2 (46:22):
Let me Google it.
Sometimes I would say, like,what is this medication?
I don't know.
Let me Google it.
Or let me understand more aboutit so I can answer your
question.
It's okay.
Patients don't look at usknowing that we should know
everything.
And then this should be a goodlearning experience for all the
doctors.
They learn more from theirpatients.
Because when patients bring insomething that should incite
(46:46):
something to click in your brainto go research this, try to
find answers so you can try toget back to your patients and
try to help them.
Speaker 4 (46:54):
Yeah.
I wish, I wish so many timesthe doctor would be like, you
know, I'm really not sure.
Instead of like leaving withbad information.
And then here's the other partof this.
When I was given badinformation, I wanted to tell
everyone this bad informationbecause I finally had
information.
Yes.
So that it's that cycle, right?
It's a it's a toxic cycle, butit's a cycle nonetheless.
(47:17):
And I I just which is why I'mdoing what I'm doing, because I
wanted to break this cycle ofbad information from just me.
You know, I I think that I hadsuch guilt over what I was told
that I wanted to express toeveryone.
And I'm like, I can't do thatanymore.
It's so harmful.
But that's another story foranother day.
Yeah.
(47:38):
We've touched on how endo canspread and sustain itself, but
what about how it affects thewhole body's energy system,
which is something that many ofus struggle with?
How might the metabolicdysfunction explain symptoms
like chronic fatigue or fatiguein general?
Speaker 2 (47:55):
We'll we'll all go
back to the inflammation.
The inflammation mediators orthe substances produced when you
have inflammation likecytokine, TNF alpha, IL6,
interleukin 6, interleukin 1beta, they do affect the insulin
signaling and they create aninsulin resistance and they can
impair the glucose.
So the first thing.
(48:16):
Second thing, estrogen isknown.
The high levels of estrogenpresent in endometriosis
patients also produces anabnormal fat tissue deposition.
So that leads to insulinresistance and that leads to
obesity.
Speaker 5 (48:32):
Right.
Speaker 2 (48:32):
Add to this the
adipoine system, which is two
main hormones, the leptin andadiponectin, both hormones.
The adiponectin plays a role ininflammation, it decreases the
inflammation.
So in endometriosis patients,it's slower because of the
inflammation.
And the leptin, the mostimportant, the leptin suppresses
(48:53):
your appetite and increasesyour energy.
And in endometriosis patients,the leptin is low as well.
So you have more appetite andthen you have reduced energy.
And that leads to increase inweight.
Add to this the inflammationimpacts the mitochondria energy
expenditure.
So the mitochondria are smallorgans that are contained in the
(49:17):
cells.
They produce energy.
So whenever there is adysfunction, you feel fatigued.
Speaker 4 (49:22):
Yeah.
Speaker 2 (49:23):
You feel drained,
whatever you do.
So all this combined, you haveless ability to do activity, you
have abnormal deposition offat, you have an increased
weight, you have uh an impairedinsulin resistance, you have
impaired glucose or elevatedglucose, even sometimes
diabetes, all that togetherleads to a metabolic syndrome.
(49:44):
So it's uh everything isinterconnected in a way the body
works in a way that is easilyunderstood if you search for the
answers.
And then all the body havemessengers that talk to each
other.
And whenever we create adisruption, that leads to a
cascade of events that willaffect multiple systems.
Speaker 4 (50:04):
But it also explains
for a lot of people the other
side of this where it does playwith you mentally.
Again, it's the cycle, right?
And we can't always controlthat.
Speaker 2 (50:16):
This is the circle
that you need to break it at one
point.
Either you start breaking itwith surgery by removing the
disease, or you start breakingit with interventions that helps
doing melt mental healthsupport is extremely important
into managing or encouragingbecause if you're depressed,
whatever they offer you, I triedit before, it's not gonna work.
(50:39):
This will not do stuff.
So patients with endometriosis,we have to understand there are
a lot of traumas from pain,from the disease, from the
impact, societal impact of thedisease, that lead to behavioral
changes sometimes.
Sometimes they dismiss thetherapy because they're being
(51:00):
gaslit or they've been burnedbefore or they've been
traumatized by care.
Speaker 3 (51:04):
Right.
Speaker 2 (51:04):
So that's why a
cognitive behavioral
intervention can help restoringthat mental ability to just pull
up your sleeve and get to workwith the right provider that
will support them with the rightsupport network.
So what we thought these arethings that happen, it's okay.
No, it's not okay.
(51:26):
There is a treatment for that,there is a care for that, there
is a light at the end of thetunnel, but we need to work
together, we need to partnerwith the patients to get to the
end of the tunnel.
Speaker 4 (51:37):
When you work with
patients or when you approach
have patients with a metabolicdisorder, what are some
practical steps maybe for themto heal from that?
Speaker 2 (51:47):
So at the beginning,
when we start, most of the
patients that come see me are inpain, they have endometriosis.
So there is a source ofinflammation.
And then we need to reduce thatsource of inflammation by
intervening and removing thelesions.
So we need to break or tominimize the generator of
inflammation.
Once you take away thegenerator of the inflammation,
(52:09):
you can do far moreinterventions that will be
minimalistic, that would lead toa better perception for
patients and improvement inquality of life.
If you, for example, uh you cutyour muscle, right?
You cannot go, even if you dorehabilitation, you need first
to suture that muscle,rehabilitate from that before
(52:29):
you run.
So we cannot start runningthinking like only in the movie
that happens they shoot the heroand they continue to run.
I don't understand this, but inreal life, no, we fix the uh
issue and then we run.
It's amazing.
They get beaten if I uh hit myelbow somewhere, I'm sitting for
two minutes.
I get beaten to death and theystill run.
Speaker 4 (52:51):
I know.
I would like to just be able togo up the stairs without like
groaning and moaning to get upthere, you know.
But I do think that that'ssomething that I always have
said show yourself grace becauseit's not an overnight thing.
You can't do you can't healovernight.
Your body is not meant to dothat.
It didn't break overnighteither, right?
Like we shouldn't expect it toheal overnight.
Speaker 2 (53:12):
Yes, yes.
And as I mentioned again, inthe absence of the disease, the
sequelae of endometriosis needto be rehabilitated and treated
separately.
Because even though in someyoung and healthy patients, your
body restores itself, but ittakes a longer period of time in
patients who have an impact ontheir immune system.
Speaker 5 (53:34):
Yeah.
Speaker 2 (53:34):
Like at my age, I
used to twist my leg and then go
play soccer the next day.
But now if you twist your leg,you put the boots, you it
doesn't our immune system isgetting old, but imagine if the
immune system is impacted, andthat leads to a cascade of
multiple dysfunctions.
And that's why the normalhealing process is lengthier
(53:56):
than somebody who has an intactimmune system.
Speaker 4 (53:58):
Yeah.
Or is younger.
We won't talk about that.
Thank you for taking the timecoming out here and spending
this quality time with us.
I'm excited to see what's next.
We'll do it together.
If this episode helped rechargeyour Endo battery, please take
a moment to like and subscribeon YouTube.
(54:20):
It really helps others in ourcommunity find these resources
too.
And if you're listening on apodcast app, leave a quick
rating or a comment to show whatresonated with you.
Every bit of engagement helpsus reach more people living with
endometriosis and chronicillness and reminds them they're
not alone.
Until next time, continueadvocating for you and for
(54:44):
others.