Episode 46: Why Endometriosis Is Still Mismanaged & How We Can Do Better as Clinicians w Heather Guidone

Heather Guidone joins us to help work through all of the noise surrounding endometrosis. 

She the Program Director of the Center for Endometriosis Care and a Board Certified professional health Advocate. She has focused on 'bench to beltway to bedside' efforts in endometriosis research funding and facilitation, legislation and policy reform, education, advocacy and activism, patient-centric care, and more for over thirty years; importantly, she is also someone who has struggled with the disease. 

What we will discuss: 

-Why the "retrograde menstruation" theory falls short

-Why birth control, pregnancy, and hysterectomy aren't  cures

-The key differences between ablation and excision surgery

-Why diagnosis requires skilled listening, imaging, and sometimes biopsy

-How trauma, chronic stress, and nervous system dysregulation can influence symptoms

-The critical role of patient autonomy, informed consent, and individualized care

-How to find a skilled excision surgeon and what questions to ask

-Non-surgical ways to manage endo symptoms (like PT, stress regulation, and nutrition)

Timeline:

00:00 Introduction to Endometriosis Mismanagement

00:28 Meet Heather Guidon: Advocate and Expert

00:59 Debunking Myths: Retrograde Menstruation and More

03:55 Understanding Endometriosis: Beyond Painful Periods

13:03 The Role of Trauma and Stress in Endometriosis

15:09 Patient-Centric Care and Informed Consent

28:18 Diagnosis and Treatment Options

40:05 Understanding Excision and Ablation

42:31 Challenges in Accessing Quality Care

46:09 Questions to Ask Your Provider

49:16 The Importance of Compassionate Care

54:05 Surgical and Non-Surgical Treatments

59:27 The Role of Hormonal Treatments

01:07:01 Endometriosis: A Multifactorial Approach

01:09:35 How to Reach Out for Help

01:13:40 Conclusion and Final Thoughts

You can learn more about Heather at:

https://www.centerforendo.com/

If you are a health or movement professional and want to stay in touch with future episodes, webinars, courses, events and more. Subscribe to my email list here

I’ll see you in a week!

Episode Transcript

(00:00):
Welcome back to TMI talk withDr.
Mary.
Today we're gonna be talkingabout why endometriosis is still
mismanaged and what we can do asclinicians to help better serve
our clients so that way we canget them the results that they
need.
Maybe it's just not.
Pt, maybe it's not justchiropractic care.
Maybe they actually needsurgery, maybe they need an
endometriosis specialist.

(00:21):
But oftentimes there's so muchmisinformation out there that it
can be even confusing asclinicians to even know where to
send our clients.
So today I am so excited becauseI brought on Heather Guidon, who
is the program director of theCenter for Endometriosis Care
and a board certifiedprofessional health advocate.
She is focused on.
The bench to beltway to bedsideefforts and endometriosis,

(00:45):
research funding facilitationlegislation, policy reform,
education advocacy and activism,patient-centric care, and more
over 30 years.
More importantly, she's alsosomeone who has struggled with
the disease.
In this episode, we're gonna goover why retrograde menstruation
Theory falls short.

(01:05):
Why birth control, pregnancy andhysterectomies aren't the
answer, the key differencesbetween ablation and excision
surgeries.
Why diagnosis requires skilledlistening, imaging and sometimes
biopsy how trauma, chronicstress, and the nervous system
dysregulation can influencesymptoms.
The critical role of patientautonomy, informed consent and

(01:26):
individualized care, and how tofind a skilled excision surgeon
and what questions to ask.
Also, we review non-surgicalways to manage endometriosis.
Such as physical therapy,nutrition, and stress
management.
So I hope you enjoyed thisepisode.
Now we're gonna get to it.
Welcome back to TMI talk withDr.

(01:47):
Mary where we dive intonon-traditional forms of health
that were once labeled as tabooor dismissed as Woo.
I'm your host, Dr.
Mary.
I'm an orthopedic and pelvicfloor physical therapist who
helps health.
Movement and rehab professionalsintegrate whole body healing by
blending the nervous system intotraditional biomechanics to
maximize patient outcomes.

(02:08):
I use a non-traditional approachthat has helped thousands of
people address the deeper rootsof health that often get
overlooked in conventionalwestern training.
And now we are gonna be startingour next episode.

Audio Only - All Particip (02:21):
Well, welcome to the show, Heather.
I'm happy to have you here.
Thank you so much.
I'm such a huge fan.
It's such a privilege and anhonor and a pleasure.
Thank you for having me.
Oh, I feel the same about youand like we were just saying
before, don't be on your bestbehavior.
No, no behavior here todayexcept Ill behavior.
We're gonna get in good trouble.
Before we jumped on here, wewere talking about humor and

(02:42):
dark humor and how it's allhealing and laughter, and I
truly feel it is the bestmedicine.
Like when you feel like shit itlike you can laugh.
you have to be able to pokefunny yourself.
You have to be able to takethose vulnerable moments and not
make light of it.
You wanna show yourself grace,but you have to be able to take

(03:04):
those moments and really justsay, what else is there?
You know it, what else can I do?
I have to laugh to keep fromcrying sometimes.
I just have to, and I know somany people like that.
Oh yeah.
So much.
I do think, yeah, like you weresaying, there's a balance.
Between, giving yourself thespace to feel and be sad and

(03:25):
emotions, but also there's apoint of humor can be, I used it
for many years to deflect andlike just be like, oh, I'm fine.
I'm fine, everything's fine.
But now I use it as a healingtool.
So it's interesting to look atit that way.
And so you've reclaimed thatpower.
I love it.
Yeah.
Yeah.
So well, let's just go ahead andjump right in and Yes, all

(03:50):
things Endo, TMI.
Let's do it.
Yes.
Endo, TMI.
I love it.
Yeah, can you explain toeverybody why endometriosis is
more than a painful period?
I feel like there's just so muchmisinformation around here, and
I'd love for them to hear itfrom you.
Absolutely.
Yeah.
For far too long this diseasehas really been reduced to a

(04:10):
reproductive disorder.
It's been framed as a menstrualdisease.
It's constantly talked about asquote unquote just a bad period.
It's just killer cramps.
It's just backwards,menstruation, all of these
things that really reduce it.
And take away from the magnitudeof what it really is, which is a
systemic chronic inflammatorydisease.

(04:32):
The tissue that comprises thelesions of endometriosis.
Yes, they're somewhat similar tothe endometrium, which is where
it gets its name from, butthere's so many biomolecular
differences between the lesionsof endometriosis and the normal
or native endometrium.
It's different tissue.
It behaves differently.
It acts differently in the body,and it's been found in virtually

(04:56):
every organ system in the body.
It's not just a reproductivedisease of the ovaries or found
on the surface of the uterus orin the rectal vaginal area.
It has been found in the lungs.
It's been found.
In the sciatic, it has beenfound in the brain.
Rarely it's been found in folksassigned male at birth.

(05:18):
You name it, it has affected thebody.
Fetal autopsy has revealedendometriosis.
It has been found everywhere ineverybody.
Now of course, obviously it goeswithout saying.
Yes, it predominantly impactsthose assigned female at birth.
Many people with a uterus, butnot just those with a uterus,
you can be post hysterectomy.

(05:41):
You may not be menstruated forwhatever reason you may be in
menopause.
Endometriosis can still affectyou.
And I know we'll probably talk alittle bit about, the different
phases and so forth.
But if we wanna just talk puredefinition, the most simplistic
way to put it is a disease thatis comprised of tissue, somewhat
resembling the endometrium, butdistinctly different.

(06:04):
And it causes a host of issuesif you've ever suffered from
endometriosis, it is way morethan painful periods.
It is pain apart from periods.
It can be terrible GI symptoms.
It could be organ dysfunction,it could be a collapsed lung.
It could be ureter or kidney orbladder dysfunction or pain or

(06:27):
issues with that.
There is a fertility componentjust as there may be a menstrual
component, but again, that'spart and parcel of other
symptoms.
Things that you might not eventhink about.
Chronic inflammation, fatigue,neuropathic pain painful sex.

Audio Only - A (06:44):
Gastrointestinal problems, collapsed lung in the
cases of thoracic endometriosispainful sex, body wide
inflammation, things you mightnot think of, poor sleep
quality, fatigue, loss ofproductivity.
A host of symptoms and indifferent organs and different
body parts can really beattributed to endometriosis pain

(07:08):
and symptomology.
So it's very far reaching, fardistant from the pelvis, far
outside the reproductive organs,and far and apart from
menstruation.
Yeah, as for those of youlistening, I have endometriosis
and it's something that I'vebeen managing and have under
control currently, but you alsohave had it yourself.

(07:29):
That was your big part of yourstory as well.
And so we can speak fromexperience how the amount of
gaslighting, the amount ofmisinformation, the amount of
just dismissiveness, I don'tthink people are, at least for
me, I don't think theyintentionally do it.
I just think that there's justso much lack of information.

(07:51):
And then you saying too, thatpeople assigned male at birth or
are experiencing this as well.
So what do you think, there's somany theories behind
endometriosis and one of theleading ones that I've seen is
how it's retrogrademenstruation, but What are you
you all seeing All almost 90percent of menstruators

(08:12):
experience some level ofretrograde menstruation.
Not all 90 percent of them aregoing to develop endometriosis.
It doesn't explain endometriosisin CIS men even though that's a
very small study sample.
There's only a handful in theliterature, but they exist.
And it's not just men who havebeen on hormones for prostate

(08:33):
cancer.
It's men who have never hadcancer, never been on hormone
therapy.
So while small, and of course,obviously, it predominantly
impacts those born with auterus.
It retrograde still doesn'texplain endometriosis in all
people who are affected.
They have found it in fetalautopsy.
There is some link to it.

(08:53):
Retrograde neonatal bleeding.
But again, we can't reallynecessarily align that with
adult endometriosis.
We look at teenage, premonarchal, and adolescent
endometriosis.
Those who've never menstruated,they have the disease.
Sometimes it's a different, moreaggressive form even than
adults.
So retrograde definitely has aplace in endometriosis in terms

(09:18):
of, historical origins.
It simply cannot explain thedisease in all bodies, and that
is something that Samson himselfacknowledged throughout his
career.
He said, I acknowledge that thisis really one of many therapies.
And at the end of his career, hesaid, it's less important to me
whether I'm right versus findingprogressive knowledge on the

(09:42):
disease.
So he acknowledged it eventhrough it.
His work that this is just oneof many as we've evolved as our
knowledge has grown organicallyand through research, we begun
looking at things like.
Embryogenesis.
Are you born with it?
Is it a perfect storm ofmultiple factors?

(10:03):
Inflammatory, immune components,genetics, epigenetics, stem
cells.
In our opinion, in our center'sopinion, we are probably born
with it.
It is probably triggered by amultitude of factors and or
mechanisms.
But the reality is there is nota single theory that explains
all endometriosis in all ofthose affected.

(10:24):
We have a long way to go and wehave a long way to go.
Can you explain who Samson isfor people listening?
Cause I'm also like to letpeople know, like I break things
down a little bit too.
So retrograde menstruation isbasically instead of, or a
majority of the menstrual flowcoming through the cervix and
out through the vagina, it'sgoing.

(10:45):
Into the abdominal cavity.
Yeah.
John Sampson was a preeminentgynecologist.
He gets maligned quite a bit.
He takes a lot of heat for histheories, but he really did have
a very big role in, in helpingendometriosis evolve both
research wise.
And in terms of awareness.
So in 1927, nobody was reallycountering his theories and his

(11:08):
work because nobody knew, nobodyknew how to counter it, except
for a couple of folks who saidyou're wrong.
He believed was that menstrualeffluent would back up through
the tubes, shower out amongstthe pelvis, all over the
ovaries, and voila, you haveendometriosis.
That would work if it couldexplain endometriosis in all

(11:31):
bodies, which it can't, and thatwould work if natives Slash
normal endometrium andendometriosis lesions were
identical, but they're not.
So we know there has to be otherreasons in addition to, apart
from and or instead of justSamson's theory his is the most

(11:52):
enduring because we don't havethat much research to combat it.
We are definitely getting there.
There are so many wonderfulscientists.
So many wonderful researchersreally doing the yeoman's share
of work on the pathogenesis ofthe disease and really helping
us better understand it, whatits origins look like, where it

(12:14):
came from, why some people getit, some people don't so you
know, I have hope that we willhave definite progress in our
lifetime, for sure.
Yeah, I think for me, I didn'trealize so much of my chronic
fatigue was also related to it.
The back pain, the painfulperiods, the painful sex.

(12:38):
And for me, what I've realizedis a lot of it was being
estrogen dominant, sinceendometriosis is estrogen
dominant.
And progesterone resistant, justfor that added extra bonus.
Yeah, I'd love to chat with youmore about like that, but then
also insulin resistance and howmuch that was affecting.
So when I managed my diet and mystress levels, sure, that made a

(13:01):
massive difference.
I do see a high correlation withpeople with endometriosis and
unprocessed trauma or childhoodtrauma.
Do you see a lot of that in yourclinic?
Not as much as you would expectgiven the body of research that
indicates we should.
There's definitely a componentbut that may just be a

(13:23):
population bias.
Totally.
Yeah, that's what I was askingyou.
If we are to believe theevidence based literature, which
seems to think everybody withendometriosis has been sexually
or physically abused or has somesort of trauma, then you would
expect every single one of ourpatients to have some form of
trauma.
And certainly there are as ahuman race, we're just going to

(13:46):
encounter that.
Right?
Yeah, we're all going to be notas much as you would expect.
Okay.
Given what the literature tellsus we should be, maybe that's
because patients are not moreforthcoming.
I just, we don't see that kindof link that says up, this is
definitive.
But it's there.
It's in the background.

(14:07):
We do see physical anomalies.
Uterine didelphys, if they'reborn with a heart shaped uterus
or they have an obstructiveoutflow, you would expect to see
maybe endometriosis in thosepatients.
And we do.
But again, that's a very smallpart of the population.
So it really just depends.
Yeah.
Yeah.
I didn't, for me, I'm 38 now andI, it's just more of being in

(14:32):
that chronic fight or flight.
And once I started working onthat and not knowing that I was
in that fight or flight all thetime.
So I would have put on yourthing that I don't have history
of trauma, but I didn't knowthat even just.
Something that doesn't seem liketrauma to somebody else could be
traumatic to me in those, thatinner dialogue of just not

(14:53):
knowing that you're under fightor flight all the time.
But I also don't like to, thething that I don't like about
the trauma movement and likereally diving in is it doesn't
explain.
Everything right.
It's almost like this.
it's like the gasoline on top ofwhat's actually happening,
right?
And I think that's why it's soimportant, as practitioners, as

(15:13):
centers, as healers, asphysicians, as nurses, all
healthcare workers, we reallyhave to come from a place of
trauma informed care.
And that has been a more recentmovement versus what has been
historically done.
In the past, we've had suchpaternalistic medicine.
We have, the overarchingpatriarchal model of health care

(15:36):
where I am the doctor.
I know best.
We didn't really deliver thosepatient centric shared decision
making biopsychosocial modelhealth care.
We just said you have a femaledisease.
We want you to get pregnant andthen have a hysterectomy and go
about your business.
Whereas now patients are soeducated and so smart and

(15:59):
they're so well attuned withtheir bodies and such experts on
their own lived experience andoften the only expert in the
room.
They're pushing back againstthat.
So the care has really evolvedinto a shared decision making
model where that traumacomponent is being thought about
in advance.
There's deliberate and a morejudicious model of care, I

(16:23):
think.
Oh, yeah, I actually just did apost on this how it is not
hierarchy, like evidence basedmedicine is the patient, the
clinician's experience andresearch.
So it doesn't matter if you'rethe physician and the client and
the patient.

(16:44):
Isn't resonant.
What you're saying is notresonating.
So how can we meet them wherethey're at?
So maybe they need more of atraditional like Western
approach, right?
Or maybe somebody over herewants to avoid surgery because
they have more Eastern beliefs,but they're open to Western and
I'm all about blending.
I'm like, we need to be blendingthe two because there's so much

(17:06):
shame.
There's so much shame around ohgoing and getting maybe say, if
we're talking about the spine,getting an injection in your
spine or being on medication forendometriosis, but then still,
doing your inner work tounderstand your traumas and your
stressors and then diet, right?
There's not this cohesive,there's just that I, and.

(17:28):
It's an or and I'm like, no,it's a yes.
And it's a plus, it's a plus,and I think that's really
important because there is a lotof shaming.
There's a lot of med shaming.
There's a lot of hysterectomyshaming.
There's a lot of surgicalshaming.
There's just shaming everybodyfor everything.
And I always say.
I don't care if you hang upsidedown by your toes like a bat and

(17:51):
eat kale in the moonlight.
If it helps you, do it.
Right?
everybody wants so much blackand white about this disease and
its treatments.
And there is not one size fitsall model.
It's a gamut of things.
We can try surgery.
Excision surgery is a great andhuge and surgical cornerstone.
It's important, but there areother medical knowledge systems

(18:15):
that can play into someone'swell being.
I might do really well withtherapy and surgery and go about
my business.
Somebody else may want to doacupuncture and no surgery and
watchful waiting.
Somebody else might want to domedical therapy and suppression
because it helps them go back towork and take care of their home

(18:37):
and their family and that'sgreat.
Somebody else might be doing allof those things.
Someone else might only beeating a gluten free diet.
Awesome.
Does it help you do it?
But we've got to get away fromthat finger pointing and that
shaming that, if I don't havesurgery, I'm failing myself.
If I do have surgery and my paincomes back, then I've failed

(19:01):
you.
If I didn't eat the right food,I'm not doing it right.
If I didn't, take this pill,then I'm in the wrong.
Or if I did take this pill, I'min the wrong.
Enough of that.
There are multiple adjuncts thatplay into the multidisciplinary
management of this disease.
People need to find what worksfor them.

(19:22):
And it needs to resonate andalign with their beliefs, their
outcome goals, what they'relooking for long term.
Their affordability, becauselet's face it, insurance covers
nothing, and even when it does,it's still unattainable.
There is a lot that goes intomanaging this, and it has to be
up to the person.

(19:43):
The best we want to do, asadvocates and centers and
providers, we have to make theeducation available.
We have to let them be able tomake their own informed
decisions, and we need to behigh supporters of that.
Even if it's not something weagree with, if it's not the
direction we would go, if it'snot something we're capable of

(20:04):
offering, that doesn't mean itmight not help.
Now, that's very different fromselling 5, 000 coaching
platforms to unsuspecting peopleon the internet.
there has to be a balance.
There has to be legitimacy.
There has to be some evidencebehind the therapy.
You cannot just hang a shingleup on the world wide web one day

(20:26):
and say, you're an endo coachand you are selling flower seeds
that need to be added to thisdiamond water and you're going
to cure your endo.
We can't have that.
But I think having legitimatedifferent medical systems and
different belief systems playinto a full adjunctive care.

(20:46):
That's where the answers lie.
But at the end of the day, it'syour decision.
It's my decision.
It's that patient's decision.
And we need to support them.
No, I 100 percent agree.
I think my concern withmedications and surgery is that,
especially with hysterectomies,I've had so many clients that
told that was their only option.

(21:07):
And then now they're, dealingwith the side effects from
having that and feeling oh, Ididn't know there were other
options or being put on.
I didn't know it wasn't a cure.
Yeah, and then they're put onbirth control and sometimes put
on estrogen birth control whenthey need more progesterone.
And so they're just like, wait,I didn't know, I don't even know
what birth control I'm on.
and my whole thing is I justwant people to know all of the

(21:30):
things.
Yes.
Hard.
Cause this is still evolving.
Right.
Right.
To just be jumped into ahysterectomy is Oh, like it's
not your first choice, and I saythat to people all the time I'm
just going to have ahysterectomy and an oophorectomy
and I'm going to be betterbecause that's what my doctor
said.
Your doctor is operating from aplace of outdated information

(21:51):
coming from a time when it wasbelieved that this is a
menstrual disease, therefore.
If we take out the source ofmenstruation, we're going to
cure the patient and that's,decades old And there's multiple
reasons for this.
First of all, it doesn'toriginate from the uterus in
most cases, right?
I think it's safe to say We'reborn with this disease outside

(22:14):
the uterus by very definition.
Endometriosis exists outside theuterus.
You're taking out an organunless you have adenomyosis,
which we can talk about theuterus is typically not affected
by endometriosis.
So now you've left disease.
right?
And you've taken out a uterusand maybe you've taken those

(22:35):
ovaries too.
And maybe they needed to comeout for you.
Maybe for you, that's the rightanswer.
I had a hysterectomy andoophorectomy.
I am hollow.
I have nothing.
For me, that was the rightanswer.
I had multiple gynecopathologiesin addition to my endometriosis.
But for somebody who's 22 yearsold, hasn't made any decisions

(22:57):
about, Family building down theroad doesn't really, hasn't
really tried anything else.
Hysterectomy is not your go to.
And it's not a cure.
That's an outdated notion.
But yeah there's many reasonsfor that.
But my point is that is theoften go to still and that is

(23:18):
the case and somebody goes intothat and they choose that by all
means, but a lot of times in myexperience, they don't have all
the information and they regretit and then they're thrown into
menopause if they take theirovaries out to, and they're
like, I didn't know.
I don't know.
Nobody told me.
And that's, I'm not going to usethe word malpractice, but I am

(23:41):
going to confidently say thatit's negligent, right?
I am going to say that it'snegligent because there's
something called the sacredconstruct of informed consent.
And you have to tell yourpatient this is your expected
outcomes.
These are your expected pros.
These are the benefits.

(24:02):
These are the cons.
And if you're simply tellingthem you're cured by taking my
ovaries out, you have notinformed me.
And that is negligent.
Yeah.
Yeah.
I'm often confused on how peopleare still not looking into this
and then making massivetreatments.
From a clinician or surgicalstandpoint without knowing the

(24:25):
body of evidence and talking topeople like yourself and people
that are true, like in thetrenches researching this and
knowing what's coming out in theresearch.
And it's evolving and there's somuch each year.
I'm like, Oh, what we learnedlast year is even outdated than
this year.
And each six months ago, yeah,it's just constantly evolving.

(24:48):
And you have to stay on top ofthat as a clinician, you've got
to stay abreast.
And that's why when we talkabout, certifying formally and
institutionally certifying asubspecialist in endometriosis,
that would make a differencebecause right now anybody can
say they're an endospecialist.
You want somebody who onlyfocuses on this disease, who
keeps abreast of the literature,who is in the trenches, like you

(25:12):
say, who is at the events, atthe conferences, learning from
and teaching their colleaguesdifferent tips, tricks,
techniques, technologies,devices, products, all of those
things that go into the part andparcel.
Of making sure that you'retreating this disease the best
way you can for all of yourpatients.
You have to have anarmamentarium To treat all of

(25:35):
your patients because not everypatient is one and done.
Not every patient is one sizefits all and i'm not going to
hysterectomy shame again.
I'm not a hysterectomy patientmyself.
For me, it was the right answerfor someone else.
It may be the right answer.
Maybe your ovaries are sodamaged that they had to come
out.
That's a decision between youand your physician.

(25:56):
But if your physician ispresenting it to you as well,
we've got to take them out.
We have no choice.
I want to get a second opinion.
I want to have somebody elselook at that.
That might be able to say, maybewe could do something else.
Maybe there is a way.
You know some other treatment.
Yeah, and my whole thing is antishaming So like the whole thing

(26:18):
about if you did get ahysterectomy because of this I'm
not shaming anybody Oh, it'smore of I just want people
having informed consent beforewe want you to know we're here
to support you Yeah, we're gonnacheerlead you all the way to the
OR if that's your choice.
I'm here for that.
I hope you feel better for life.

(26:38):
I hope your days are pain freeforever.
Just know that we want you tohave that information.
That's why you're here.
That's why people like me arehere.
That's why you see such a strongadvocacy movement out there.
We just want people to knowbecause so many of us have
walked that path.
We work on that path.
We're in the weeds.

(26:59):
We're in the garden.
We're pulling them up every day.
We're seeing what's working,what's not.
And I think it's important todemocratize that knowledge and
let it out.
People be the bearers of thatknowledge so that they can make
the best decisions, I workacross the women's health gamut
quite a bit.
Obviously, endometriosis is myfocus.
You don't see this dearth ofinformation and this lack of

(27:22):
consent.
For various treatments in otherdiseases and disorders,
particularly in women's health.
You see very concerted movementsto educate patients to make sure
that the most cutting edge, nopun intended, technologies and
information is being applied tocare.
you only see this.
primarily in endometriosis anddiseases like endometriosis,

(27:47):
where there's a pelvic paincomponent or a taboo or a stigma
attached to it whichunfortunately endometriosis
does.
And that's very frustrating tome because it's as important, if
not more so than any other quoteunquote women's health.
Condition disease disordersyndrome out there.

(28:10):
So it frustrates me.
The thing that frustrates me themost too, as a clinician is
getting people diagnosed.
Yeah.
I know we can make assumptions,but the goal, would you say the
gold standard is still alaparoscopy?
I would not just a peek andshriek though, if we're going to
do surgery at all, you shouldnot be just opening up that

(28:33):
patient and going, Oh, you gottaknow, putting a little stitch in
there, closing them up, sendingthem on their way, and now
you're gonna keep them on birthcontrol or GnRH analogs for the
rest of their lives.
No.
If you are prepared to diagnoseat the time of laparoscopy, be
prepared to therapeuticallyremove it.
through excision.
Be prepared to send tissuesamples to biopsy so that we

(28:56):
have histopathology thatconfirms the diagnosis.
No one should be doingdiagnostic only laparoscopy
anymore.
that should become as antiquatedas plague masks.
Look and just close them backup.
So basically a laparoscopy isthey're going in surgically to

(29:16):
assess the tissue, basically.
And I like to break it down sothey can understand and ask some
of these questions.
What are some non surgical waysto diagnose because I'd love to
hear how what you all are doingand how I've been leading people
to gauge hey, this might besomething you want to look into

(29:38):
treatment wise.
I think the first thing that youhave to do to diagnose anybody
is listen to your patient.
They will tell you everythingthat you need to know about this
disease and all of theirsymptoms, but you have to listen
and you have to listen tounderstand, not just reply.
You want to understand the fullscope of their narrative.

(30:00):
Does it align with?
Not necessarily a classicalpicture of endometriosis, but
okay, now we're talking aboutsciatic pain.
We're talking about leg pain.
We're not talking about killercramps.
We're looking at spitting upblood once.
That's not a classical type ofsymptom that you would learn in
med school or think about whenyou talk about endos.

(30:23):
So we want Sure, that you'relistening to the patient and you
should never count endometriosisout as a potential diagnosis,
but then you really have to do avery methodical judicious work
up your pelvic exam, yourphysical exam.
These things matter.
You may be able to palpate as askilled G Y N nodules in the

(30:46):
rectal vaginal septum.
These are highly indicative.
You've got to utilize imaging.
I know imaging is just havingthis moment right now as if it's
just suddenly been invented.
The endo folks have been usingimaging and endo care and
diagnosis for, longer than I'vebeen alive.
Yes, we have some wonderfulEmerging technologies now, and

(31:09):
there's far better understandingof imaging appearances and so
forth.
So you've got to take advantageof that.
MRIs, maybe you're doing arectal gel protocol looking for
endometriosis.
Maybe you're doing a dynamicultrasound.
Maybe it's transvaginal.
Maybe you're doing a cat scan,whatever your modality is, There
are imaging techniques out therethat should be playing into your

(31:31):
diagnostic workup.
Now you can rule endometriosisin with imaging if you know what
you're looking for, you cannotrule it out.
It is still not sensitive orspecific enough to just look at
a hundred patients who haveendometriosis, confirmed a
biopsy and know that all 100 ofthose patients had endo or have

(31:52):
endo.
So you do the dismissal of folkswho say it stops here.
The diagnostic journey stopshere because I didn't see a no
on your imaging.
That's an injustice.
They may have superficialendometriosis.
They may have missed disease.
They may have a typical diseasethat presents just as maybe some

(32:12):
peritoneal Weird lookingappearances, it may be very
superficial.
There may be things that you'renot seeing, not recognizing, or
not getting picked up.
So the journey does not stopthere with an absolute no.
If you still continue to suspectit, maybe the patient doesn't
want surgery, maybe they're tooyoung, maybe they're medically
fragile, maybe they just don'twant it.

(32:34):
What's your option?
PT.
Number one.
Start looking into PTimmediately.
I will forever be the championof PT and pelvic floor therapy.
Maybe you want to do acombination of PT and medical
therapy.
Maybe you want to do oralcontraceptives.
Maybe we also suspectadenomyosis.
So perhaps an IUD is an optionfor you.

(32:56):
I don't know.
Maybe that's the route you wantto go.
There are things you can do presurgically and or if someone
can't or does not want to havesurgery.
If we are talking histologicalgold standard diagnosis, you've
got to have histology.
You've got to have a sample ofthe tissue underneath the
microscope.

(33:17):
You've got to look at it.
You've got to look for thoseglands, those stroma.
Maybe it's a hemocyte ormacrophages from a lesion.
maybe we're ruling it out.
Maybe that sample some surgeontook wasn't endo.
Maybe it was something else.
Maybe it was fibrosis.
That, if you really want todifferentiate and or confirm,

(33:37):
you've got to have a biopsy.
You do not get that throughburning the lesion.
You do not get that through justzapping it.
If you are not using the laseror your tool to excise the
disease and send it off topathology, you're not going to
have anything for pathology.
So that's where excision wouldcome into play.
Yeah.
The other thing too that I'vebeen seeing in some research is

(33:59):
how endometrial tissue can getstuck up in the posterior fornix
of the vagina.
So like the backside, for thepeople listening, like the
backside behind the cervix.
Have you seen that too?
You have to explore and dissectall areas.
You've got to look from below atthe diaphragm.
You've got to look down to therectovaginal, the

(34:20):
retroperitoneal areas.
You've really got to move therocks around and pick up the
stones and look around.
You've got to obviously ofcourse, check the ovaries.
Yes, that's a no brainer.
You want to look at the backsideof the uterus.
You want to look everywhere, butyou want to be looking in that
scope.
As far and as broad as you canbecause again, it may not be

(34:41):
where you think it is.
Maybe it was missed on yourimaging mapping.
Presurgically.
You want to make sure thatyou're doing a very thorough
investigation.
The surgeons.
I, yeah, it's not as good as themagnified camera, but a skilled
surgeon's eye who treats justendometriosis all day long,
they're going to see thingsother surgeons don't see.

(35:01):
That just comes by rote.
That just comes with doing ahigh volume of cases.
They're going to know what tolook for.
Yeah.
I think there's so many things.
PTs, we can't do imaging yet.
There are some PTs that will doultrasound, but in general, the
way that we look at it is goingbased on their symptoms of

(35:22):
visceral mobility.
How is their uterus moving?
How are the ovaries moving?
How's the bladder moving?
How's their abdominal cavitymoving from their intestines?
Is there any stickiness in thetissue or lack of mobility?
You can feel when there'sVisceral restrictions, also
pelvic floor tightness.
you can get an excision andstill have the pain because the
pelvic floor muscles, you'restill getting all of that

(35:44):
visceral feedback, that feedbackof pain.
So we have to retrain thosemuscles, but that also, we've
got the uterus sacral ligament.
So the ligament that for peoplelistening, that connects the
uterus to the sacrum too, andthat can tug and pull on the low
back, even if there's noEndometrial tissue in that area.
But it's really important toassess all of these things.

(36:05):
And I, from a physical therapystandpoint, I tend to lean more
towards endo when I treat thesethings.
so say if somebody has likesciatica or like chronic back
pain and they get a little bitbetter with Orthopedic therapy
treatments.
So like mobility to the lumbarspine, maybe dry needling
mobilization strengtheningmobility, all of the variety of

(36:27):
things, but then still keepscoming back.
Also to have them track it basedon.
Even if they're notmenstruating, right, just even
that luteal phase is when I tendto see them flare up as well
with the spike in estrogen andprogesterone time.
So you'll see a lot of ovulationpain patients at that point,

(36:48):
maybe middle schmertz is theironly symptom, Which is not the
norm, maybe for someone withendo, that's the only time that
they find themselves in a flare.
So yeah, I mean Those phaseswhen you're getting your hands
on, no pun intended, that can bereally helpful for your patients
for sure.
Let's explain a little bit aboutexcision versus ablation.

(37:10):
years and years ago, this isinteresting.
I went in, so I was doing IVF.
And they did a laparoscopy forme.
And in that the surgeonapparently just did ablation on
my ovaries.
Cause apparently I hadendometriosis and I woke up and
he was like, Oh, I just burnedthat off.
And I'm like, I didn't even knowthat.

(37:33):
What?
Yeah.
Yeah.
I felt like it was taken from methat this, to my knowledge, we
didn't talk about that and itdidn't help anything.
I still had the symptoms after,but it was to my knowledge, the
way it was told to me, it was,Oh, this is a little thing.
No big deal.
Duh duh.
No big deal to them.

(37:54):
I was like, Ooh, I don't feelgood, but I didn't know at the
time that I could advocate formyself.
And on top of it, I felt myrights were Ooh, that doesn't
feel good.
No.
And you're not the first personto say that.
I hear that a lot.
Just, across our community, writlarge, like people don't feel,
educated and informed.

(38:16):
And I have more than one goodfriend who either had, their AMH
significantly reduced as aresult of ovarian surgery, or
had their ovaries just taken notnecessarily consented to.
And, Not even from a familybuilding perspective, but for
someone like you and me when wewere dealing with IVF and

(38:37):
fertility issues that reallymatters.
That's really significant, butit's also significant for the
person who doesn't care aboutchildren.
It's, you're not treating them.
You're treating a human beingand it's just so important.
And I think too, what youbrought up that kind of really
resonates with me and makes methink more about this.

(38:59):
And this is something we don'ttalk probably a lot about, it
matters to be judicious.
Even within excision shouldn'tmean going in and just cutting
everything out, that's not whatit should be or is intended to
be.
Excision is really meant to betissue sparing.
And it's meant to leave healthyorgans and healthy tissue

(39:22):
behind.
And, but I think even a subsetof that.
Someone who has said to us,fertility is my goal.
I don't care if I still hurt asa result of residual disease, I
need to build my family and thenI'll deal with that.
And that's something that has tobe respected like a cardinal

(39:44):
wish.
And if that means leaving alittle disease behind on the
ovary to protect that ovary andprotect the IMH, that's what's
going to happen.
It's the same thing as sayingthey left disease behind
arbitrarily.
That's saying your surgeon wasvery judicious because that was
your goal.
That was your outcome orientedgoal.

(40:05):
That's what we're trying to dofor you.
But then on the other hand, youhave surgeons who left it behind
because they couldn't remove it.
So now you can't get pregnantbecause you left disease behind
and they should have referredyou out.
So there's a real balance, evenwith an excision.
To make sure that it is fullyaligned with that patient's
goals and what they want longterm and what they're looking

(40:28):
for as an outcome.
Ablation.
But can you, like people mightnot know what excision is.
Sure.
Yeah.
So think of an iceberg, right?
You have this giant iceberg.
And you just shave the surfaceof the iceberg and you've got
this nice smooth surface of thewater.
That's ablation.
That's just burning in a way.

(40:48):
We've burned the surface of thelesion.
Now we have this nice cleansurface.
Then suddenly you look under thewater.
You've got this massiveremaining iceberg excision is
going in and you can usewhatever tool you want.
We happen to use the laser usingyour surgical tool to go in and
resect.
And remove the entire lesionthat's taking out the entire

(41:11):
iceberg, right?
So now you've taken the disease.
You've taken the lesion out byits roots, theoretically,
anecdotally and also in theliterature, we see that there
are far lower persistence andrecurrence rates when you remove
the lesion versus when you burnit and obviously leave the roots
behind.
It's just like a tree.

(41:32):
It's still there.
It's gonna keep growing.
That iceberg is still there.
It's still got the base.
So you want to make sure thatyou're removing and you're
dissecting out all of thedisease.
So that would be excision.
If you have to have surgery.
That is the goal that you wantis to have your surgeon cut out
all disease from all affectedareas.
And it is possible.

(41:54):
I know that folks like to say itwas the worst case anybody's
ever seen.
It could not be removed from myureter because X, Y, Z, or it
couldn't be removed from mydiaphragm because X, Y, Z, I
guarantee you it can be removed.
Most likely we do it every day.
I have two surgeons that workfive days a week, do 500 cases a

(42:19):
year in the OR of diaphragmatic,lung and thoracic endometriosis,
ureters, the most sensitiveareas you could ever think.
What you need to do is make sureyou've got your team in that
room.
but how do people find.
Surgeons like this.
That's the rub, right?
It's not so much a question offinding them because they're

(42:40):
here.
They're out there, centers likeours, we're out there.
The problem is accessing them.
And that's a real, that's one ofthe, if not the big.
of this disease is that it's soundervalued in the recent
reimbursement structure of ourinsurance system, and it's just
so ignored by the institutionaloversight boards that nobody's

(43:03):
bothered to make it asubspecialty.
We can't get out of our own waywith the reimbursement
structure.
So everybody from a payersperspective is viewed as equal.
So in other words.
You've done two cases in yourentire career.
You are viewed the same as asurgeon who has done 10, 000

(43:23):
cases, right?
So they're going to tell you,you don't need to go to that 10,
000 case surgeon.
You can go to this surgeonthat's done two cases because
all diseases treated the sameway are equal.
I assure you they are not.
And I can say that not because Iwork for one of the leading
centers.
I say that because I had 22surgeries.

(43:45):
Most of which were ablation.
So it's the problem that we needto really be continuing our
focus on and we have been fordecades is trying to fix that
access to care.
It is a travesty.
It is.
really a violation of medicalethics that we are not making.
quality standard care, equallyaccessible to all people with

(44:09):
endometriosis.
We can do it on piecemeal basis.
We can do it on small scale.
We can discount.
We can do pro bono.
But again, that's all smallscale.
We have been working for yearsacross the landscape with
legislators with medicalorganizations with medical
educators trying to get thecoding fixed so that

(44:32):
endometriosis has.
Proper reimbursement codes sothat more people can take
insurance, be in network, andeverybody can access the care.
So that's a hill I'm gonna dieon.
In fact, I'll probably die onthe hill legitimately fighting
for access to care because it'sabysmal.
I don't want people sellingtheir homes to get care for

(44:55):
endometriosis.
That is a travesty, And whatyou're alluding to is most
places are out of network,right?
So they're not taking they haveto be if they want to keep their
doors open.
These are not huge academiccenters that are backed up by
hospital systems.
These are small.
Private practices like ours.
If we want to keep our door openso that we can continue to treat

(45:16):
people.
We are insurance friendly.
We will jump through all of thehoops.
We will do all of the appealsand the peer to peer.
We will file all the paperwork,but we still process as an out
of network provider and most ofthe other endo centers that are
independent private practices doas well.
It's just it's a fact of what itis.

(45:38):
Okay.
So I, what I'm trying to get isthe people listening, like what
they can take away to find,obviously we're going to talk
about your facility and we canexplain where you all are in
Atlanta and, but also ifsomebody can't get to Atlanta,
right.
And or maybe you guys are, I'massuming you're probably on that
crazy wait list.

(45:58):
No.
Oh, cool.
So Atlanta, eight weeks,depending on the type of case.
Okay.
Awesome.
And, but so say they can't makeit to Atlanta.
So what are some questions thatthey can ask a provider?
So say maybe they're in anothercountry from all over the world
that listened to this.

(46:18):
Yeah.
And so what are some questionslike, I'm assuming like what
you're saying is, okay, do theydo excision or ablation?
How many do they do a year?
Yeah, absolutely.
First you want to understandtheir philosophy on the disease.
If this is someone who positsendometriosis as a purely
menstrual slash reproductivedisease and their interest is

(46:39):
more in your procreative valueversus your pain and quality of
life and ability to have afulfilling life.
Thanks.
sex life and go to work.
Maybe that's not the right fitfor you.
Maybe you want to find somebodyelse who values you as a whole
person and sits down and says,what do you want from your
treatments?
That would be my first sort ofwhat to look for.

(47:02):
Is this somebody who is a highsupporter of your goals and
outcomes and wants to help you.
Is this somebody who is a lessenthusiastic supporter who was
like I'd really rather you getpregnant and then come back and
see me or is this a lowsupporter who says no endo is a
menstrual disease and it'll goaway when you're in menopause

(47:25):
and or I can offer you ahysterectomy.
So I think you have to gothrough that hierarchy and see,
do they align with your beliefsand your values?
Do they, do you feel that theyare, up on, on disease
education?
Do they share your patient?
Your shared decision makingmodel, right?

(47:45):
Let's say that.
So now let's say you have foundthem.
What should you ask?
And interestingly enough, wehave a whole list of questions
from our perspective on ourwebsite.
If anybody wants to take a look,but it's things like how much of
your practice is focused onendometriosis and or pain.
How much to fertility, how muchto minimally invasive

(48:06):
gynecologic surgery generally,because Excision will fall under
minimally invasive gynecologicsurgery.
Excision will fall underminimally invasive gyne surgery,
but minimally invasive gynesurgery does not make you an
endo expert either.
So you have to parse that out alittle bit and find out what's

(48:26):
your volume.
They say 10, 000, do something10, 000 times before you're an
expert.
Have they done two cases?
Have they done 12 cases?
How many cases are you doing ayear?
What's your volume?
Volume matters.
Because as you keep doingthings, you get better at it.
And as you do more cases, you'reexposed to that, the 12 percent

(48:47):
of, extra pelvic cases that mostpeople never see.
You're being exposed tocomplications that a lesser
skill set may not be ready tohandle.
You're being exposed to Variousmanifestations of the disease
and how it presents and maybe auterine anomaly that no one
expected or some sort ofobstruction over here on the

(49:10):
left side.
You need to have volume.
Volume brings skill.
More important than any of that.
What's the compassion like?
Where's the bedside manner?
I don't want you to be the bestsurgeon on the planet.
If you're going to treat me likeshit, that's not going to work
for me.
I can't get care from somebodywho has clear disdain for me as

(49:31):
a patient but might be able to,treat my disease.
That's just me.
Other people may not care aboutit.
For me, compassion goes a longway.
I have a primary care physicianwho's been with me for 27 years.
He can't do, Everything half thestuff he can't do.
So what does he do?
He refers me out and he's kindto me That's what I need in my

(49:53):
life at this stage.
So compassion, we know what istheir compassion level?
How are they prepared to treatmy post op pain simple?
Practical questions.
I don't want to go into surgeryand then wake up and find out
I've had this six hour procedureAnd you're gonna give me some
over the counter Tylenol thatmatters I want to know that my
pain is adequately being managedI want to know that like I said

(50:16):
the volume is there What is yourteam back up?
If I'm calling the office on aFriday at eight o'clock, is
someone going to answer me?
I have an emergency.
I want to know that I'm beingcared for.
Is there a continuity of care?
A lot of the centers ofexpertise like ours.
We, we are doing immediate andacute follow up for several

(50:36):
months after surgery, buteventually you are going back to
your maintaining physicians.
That's the nature of ourbusiness.
We're a subspecialty.
We're not going to do your OB.
We don't do any OB.
We're not going to do your wellwoman type checkups.
You are going to have tomaintain your relationships with
your regular medical team.
We'll interact with them.

(50:57):
We're happy to contribute to thecontinuity of care, but you need
to have a plan in place, and youwant to establish that up front.
Am I your patient forever, orare you my surgeon, and I need
to have other providers in myarmamentarium?
You want to make sure of that.
You want to make sure that thehospital is good.

(51:18):
It's great.
Of course, you want your surgeonto have high marks, five gold
stars across the board.
Does the hospital suck?
Do they have horrible, staff?
Are they going to make my lifemiserable?
Again, something to look into.
I feel like these are so hardthough, because you can look up
reviews, at least all thehospitals in Austin are like.

(51:38):
3.
5 stars.
But yeah, I think it's importantto understand and look at all
the things and like what worksbest for you.
Like I'm okay with a surgeon,like you're like, I want a
compassionate surgeon.
I do like that.
But if I have two options and Ihave somebody that's
compassionate and they've donetwo surgeries and I have
somebody that maybe is moredirect and maybe their neuro,

(52:01):
And they don't have as much ofthat, See, I lucked out.
I got both.
I got the really nice guy whocouldn't do shit.
Then I had a really awful guywho was a decent surgeon.
But my main Surgeon.
He was a gem among humans.
He was compassionate andskilled.
And I know not everybody can getto that.

(52:22):
So they have to resonate, therehas to be, there has to be a
rapport.
Yeah.
Yeah.
I'm like, if somebody is goingto be direct with me and not an
asshole and they're, they'vedone so right.
It's different than being anasshole.
For sure.
You can be direct.
I don't mind that at all.
We want that TMI, right?
Yes.
I love the directness.
I don't like the, I'm like,what's it's black and white.
Like what?

(52:43):
Tell me like, yeah, if you'regoing to belittle me, you're not
the guy.
That's different.
But I will say, to add on, Iknow you had said you've had 22
surgeries.
I'm sorry.
You've had to go through allthat.
Thank you.
Me too.
But the goal is not to have 22surgeries, just to clear up for
people.
Nobody should have multiplesurgeries like this.

(53:04):
Because you didn't get theanswer sooner, and you were
passed around the medicalsystem.
I was.
And, people say it's minimallyinvasive, it's still fucking
surgery, and it has a lastingimpact on your body.
It still starts at you, yeah.
I am dealing in my mid to late50s.
With the impact of the poor careI had in my early and late teens

(53:26):
up through and into my latetwenties.
And that matters there, thereare disease and treatment
impacts I'm dealing with 30,even 40 years later that I
should not have to be dealingwith.
Then that's the reality for somany of us.
Which is why I say, maybe youcan't be one and done in a

(53:47):
perfect world.
That would be amazing andwonderful.
I know it's not reality, but theidea is to go in as minimally
invasive amount of times theleast amount of times it should
not be this is just how it'sgoing to be for you.
you're going to go from surgeryto med to surgery.
Cause that's not the answer.
It's addressing the surgery whenwe remove it.

(54:10):
And like you said, not everybodywants to have surgery.
That's not a path that I.
Personally like I said, mine wasablation that I was unaware
occurred.
And I was like, wow, that wasnot something I consented to,
but here we are.
But in that though, I've heardand seen That usually that
initial surgery is you want totry to go in as minimal as

(54:34):
possible, but usually that firsttime, if it's an excision, I've
heard that's like the ideal,right?
But then maybe the resultsaren't as great following.
Would you say that's correct orno?
I think it's a bit of both.
I think that if, let's say youget a surgically naive patient,
right?
Maybe they're in their earlytwenties or late teens.

(54:54):
They've never had surgery.
They don't have a concretediagnosis.
They've definitely got all thehallmarks of endometriosis.
That's somebody you can feelconfident about taking back to
surgery.
When you get in there, you stillshould treat the disease as you
would in any patient.
You should still be excisingfrom everywhere that it appears
because not only are youpreserving their fertility,

(55:17):
which again, I don't want tofocus on that as the end goal.
Maybe they don't give a shitabout having kids, but they
should have that option, right?
So you want to preserve theirfertility, but you also want to
remove the disease because itcan be progressive in people.
It doesn't always progress.
Sometimes it's.
stay static.
Sometimes it regresses in termsof symptoms.

(55:39):
Sometimes it progresses.
So you want to becompassionately aggressive as
possible.
You want to get all of thatdisease out because you don't
want them to have more surgerydown the road.
You don't want to have to keepcutting into someone.
I see a lot.
Surgeons, that's how they maketheir money.
They want to keep you sick tokeep coming back.
No, they don't.

(56:00):
First of all, it's a blow totheir ego, right?
Cause they're a surgeon.
Second of all, no responsibleethical surgeon wants to
continue cutting into a patient.
Yeah, they're balancing, theirskillset and giving the best
possible care they can.
The very first time because theyknow that it hurts a patient to

(56:22):
undergo a procedure.
They know that it's a potentialrisk of complication.
They know that down the road,having additional procedures
costs money for that patient.
No self respecting ethical moralsurgeon is just thinking of
someone as, a cutting post thatI could just continually get
money from it.

(56:42):
That's just not real.
There's always going to be amonster in every profession, but
a self respecting, skilled,compassionate, do no harm
surgeon, they want to go in asminimally invasive the least
amount of times.
That's always the overarchinggoal.
Of course.
And from a pelvic floor PT sideto just going in and making sure

(57:03):
like anytime you have surgery,their scar tissue, right?
It's our body's way to heal.
And from a physical therapyperspective, it's getting the
scars moving, getting the tissuethat was excised moving as well
when they're cleared for that.
So that way we can prevent moreof this.
The tissue starting even thescar tissue starting to hold

(57:25):
stuff down that can almostbecause you know, like
endometrial tissue can also bevery sticky, very fibrotic, you
start to see a lot of frozenpelvis in untreated disease or
someone like me who had frozenpelvis as a result of my
adhesions from going in with noadhesion barrier, no post op PT,
no prehab presurgical PT or anykind of measures, someone like

(57:50):
me who didn't have the benefitof that a lot of the time that
matters and it makes adifference in your outcome, but
it also makes your job harderfor you, I think too, right?
Cause we don't want to send youa patient who's worse off after
surgery.
We want to send you somebodywho's, going to be helped by the
therapies.
Yeah, it's just like we'resaying, I think it's important

(58:12):
for people to know that surgerywill help remove the symptoms,
but then also addressing why ithappened is surgery, even
something that you want, Andthen your post op, it's like
when you go to get a total kneereplacement, maybe that's too
drastic, but if you get a kneesurgery, right, you still have
to recover your range of motion.
You have to move the scarmobility.
You have to get it moving thesame thing for our visceral

(58:34):
organs or internal organs.
So especially in this case, likethe uterus, the ovaries, the
bowels, this tissue can stick toall those areas.
And so getting Ovarian torsionyou, you hope never to see that,
of course.
But these are all, real things.
And I think that's why thatmultidisciplinary approach and
those adjuncts are so critical.

(58:56):
You can cut the disease out, andyou should, if you are the right
candidate for that.
But, that's one part, that's onecomponent.
So what are some non, I'd loveto hear your thoughts on the non
surgical ways to treat this orto prevent after surgery.
So what are some things you'veseen?
Obviously we talked about likephysical therapy and stuff like

(59:18):
that, but what about Yeah, Ithink that you can use all of
them together with surgery orexclude the surgical component.
That may be something like wetalked about earlier, hormonal
suppression.
I don't think that I wouldnecessarily recommend.
a GnRH analog in someone who'snot been diagnosed.

(59:41):
I think that's a bit of a jump.
That's more of a given the costprofile and the side effects and
the tolerability.
I think it's pretty fair to saythat a GnRH analog family drug
is going to be a second tier.
And I don't think they should beused in undiagnosed patients
because they're not.
Approved for use in undiagnosedpatients.

(01:00:01):
That's a medication like lupronthey're very powerful.
They can be very effective Theycan also come with a host of
side effects.
So I would just say do yourhomework I would consider those
second tier I think we seem morecost effective, better tolerated

(01:00:22):
experiences in the general oralcontraceptive family.
Continuous oral contraceptives,they seem to be pretty, not by
everybody.
I'm not, no way am I inferringthat, they're completely risk
free, harm free, side effectfree.
I'm not saying that at all.
But I'm saying generallyaccessible.

(01:00:42):
Tolerated a lot of the timecontinuous oral contraceptives.
If you don't want to go thatroute.
Absolutely.
Nobody says you have to Maybeyou just want to treat the pain
and we're talking about thingslike either Prescription
medication for pain or we'retalking about things like over
the counter NSAIDs Maybe youwant to take Tylenol.

(01:01:02):
Maybe you want to take whateverand you know your preference
that works for you over thecounter My, but with the oral
birth control stuff, I strugglewith this because people are put
a lot on estrogen birth controlfor this.
And if this is an estrogendominant, I've heard that the U

(01:01:23):
S is one of the main placeswhere we tend to put beyond
estrogen birth control versusprogesterone.
It should be a combinationtherapy, but what I've seen
though, is in this other thing,when somebody is on that for an
Their whole lives, right?
It affects so many differentsystems, and so when they wanna
get off or it's not workinganymore, it can be difficult.

(01:01:44):
So I struggle with that as atype of long-term treatment.
obviously, if somebody needs itand they need relief now and it
works, great.
But what do they do?
You get what I'm saying?
Yeah, and that's just it.
You give them the education, yougive them the information, you
let them decide.
If they cannot tolerate it or donot want to be on it.

(01:02:07):
If they're like this is thegreatest thing that ever
happened to me.
I love this drug.
I'm never coming off it.
That's great, too.
As long as they know, like anyother drug.
Even Tylenol has risks and sideeffects, right?
You want to make sure again, itcomes down to informed consent
and it comes down to thepatient's choice.
You have to give them thatinformation to let them decide

(01:02:28):
and let them know that these arethe possibilities.
let's put it all in a basket.
Let's have you decide.
I will support you.
I will help however I can askquestions.
I want to maintain our closerelationship so I can see if
you're having side effects,things like that.
All of those things matter.
So you want to have thatconversation with your doctor.

(01:02:50):
For sure.
And maybe it'll be someone likeme who says, look, I've had
enough.
I don't want to be on these.
My, my breasts hurt.
I'm bloated.
I feel awful.
I'm crying in the mall for noreason.
Like the mall anyway.
So that's probably not a fairsample, but Just Overwhelmed

(01:03:12):
take me off.
You have to respect that too.
You can't say to them.
It's either or Because it'snever either or there's always
something else Yes, and yeah,but I would say beyond and the
evidence would support this ifyou've tried three Different
kinds and you still don't feelbetter and you still feel like

(01:03:32):
shit There's no reason to assumethat a fourth medication is
going to do you any good so Ithink that's a really Important
conversation that you should behaving with your doctor as well.
At the end of the day, it's upto the patient You've got to let
them decide but it's your job togive them that information
You've got to be really honestabout it.
You cannot just hand them aJanssen and Janssen, brochure

(01:03:54):
That's like people are dancingduring their periods and
everything is beautiful here inutopia No, I want to hear about.
Do you have family history ofclots?
Have you been on pills beforeand had negative side effects?
Do you know we might have adifficult time in five years
taking you off of this?
Have that conversation so thatthey feel empowered and
emboldened in, in their choices.

(01:04:15):
And if it's not something theywant or cannot do, which is also
the case so folks cannot be onit.
Then again, we're talking aboutpain managing.
I was always a crazy person onoral birth control.
Like I, I'm crazy with or withAlice, so I can relate.
I was not crying in the mall.
I was crying Everywhere.
Yeah.
Everywhere it was.

(01:04:36):
And they're hard.
I've been on'em in years, butthey're hard I think my hangup
about it is that.
So many people have just beentold like, that's just it.
Like it's this magic pill and itpisses me off when people say
that.
Cause I'm like, you're notinforming people that, we have
estrogen receptors on our braintoo.
So like when you start going offof these things, like I'm

(01:04:57):
getting, I've been weaning off,I know it's not the same, but
it's.
just made me think about, I'vebeen weaning off my SSRI after
being on it for 20 years, I wastold it was safe.
And now all of my hormones areall fucked up.
but I was unaware that I wastold it was safe to be on
forever.
And as I started waking up andstarted asking questions and

(01:05:18):
learning more, so many of theseother symptoms I had are
contributing to that.
And I, for me, it was that Ididn't know.
That this would be this hardbecause if that was the case and
I knew there were other outletsI would have never gone on it,
but it helped me Significantlymanage anxiety for a long time,

(01:05:38):
but it didn't help me with theroot.
And so that's just my hang up Ithink more with the birth
control side and then alsoThere's not a lot of blood
testing to see like what ifsomebody already has So much
estrogen already.
And then we're getting more.
Where am I?
You don't.
And I think you bring up a goodpoint too.
Are there comorbidities, which Iknow is so popular amongst, is

(01:06:00):
there something that contraindicates or maybe it has the
opposite effect on X conditionthat I also happen to suffer
from.
So it's definitely a nuancedconversation.
And I'm not, I'm not somebodyThat likes to push medication
per se it's there.
It does help.

(01:06:20):
It could help.
It may help.
It may also be horrible.
Yeah.
Yeah.
I think, letting them have thatdialogue, but it has to be an
honest dialogue just as youwould signing informed consent
to go under the knife.
Right.
I think, and I'm not.
coming at you for this.
I'm just more of, no, I knowwe're just sharing our, of
course, our mutual lack ofsuccess with pills, but

(01:06:46):
injections.
Yeah.
But here's the thing.
If somebody needs to go on itfor a couple of years to just
get things under control orwhatever it is, basically what
we're, in summary of a lot ofwhat we're talking about is.
Endometriosis is not a one sizefits all.
There's so many ways it can showup, right?

(01:07:07):
A lot of times it's around thepelvis.
Sometimes it can migrate up tothe lungs or the brain.
Those aren't as common.
You guys probably see that a lotmore because you're in the
surgery center.
But for us, that's a bit morerare.
So I don't want people to superworry, I know.
People are gonna start runningaround thinking they have endo
of the brain.
I think there's been maybe threecases in the entirety of the

(01:07:27):
literature.
The lung is more common thanpeople would think, but again,
outside the centers it's not.
Or I should say inside thecenters it's not.
I would say it's important toknow if you're having
spontaneous lung collapsing,like that's one thing, but if
you're not, but you're havingall these other symptoms and
you're not getting the answers,You should know about it.

(01:07:49):
Yeah, you should know that thisis something to consider.
And like you're saying, it'smultifactorial.
There's not a one size fits all.
It can happen.
Definitely not.
And watchful waiting is a thing.
That's a treatment.
Do nothing is a treatment.
What is not a treatment is getpregnant and you don't want to.
And even if you do, it's stillnot a treatment.

(01:08:11):
You're not going to outlive thisdisease through menopause.
That's not a thing.
You may be symptom free.
That is not the same like DavidRedwine used to say to me all
the time.
Absence of evidence is notevidence of absence.
So being symptom free while itmay be the goal doesn't mean you
don't have endometriosis becauseyou're managed well, you're

(01:08:34):
managed well and you're inmenopause.
And also when we talk about thehormones, I want to make very
clear.
They treat the pain associatedwith endometriosis.
They do not treat endometriosis.
However, if you are in medicalschool or law school and you
need to be pain free so you canfunction on your studies to be
successful, and this is anoption you want to try.

(01:08:56):
Fantastic.
You may have really good successwith it, right?
Or you may not.
but you've done a great job onjust being like, Hey, these are
the options.
These are the questions.
No, for sure.
Multi factorial approach,whatever you decide, as long as
you've had all the information,you get to do that.
I get just really passionatewhen people don't have the
information.

(01:09:16):
I'm like, do you know all thesethings or did they just present
this?
Cause just making sure thatthere's, you see the dancing
tampon commercial.
But there's just so manydifferent things in that it's
ever evolving.
So even what we've maybe talkedabout six months ago, that
stuff's changing as well.
You're trying to be 100 percent.
Trying to be patient with yourhealth care team as they're

(01:09:38):
staying on top of this as wellAnd so what are some ways that
people can reach out to you orlearn more about?
Your center and you so that waythey know how to reach out.
Yeah, definitely You knowpatients have come to us over
the last 30 years from everycorner of the world.
We've got patients in Almost 80countries now And they all tell

(01:10:04):
the same story.
They've been dismissed.
No matter if you came fromKenya, or you came from Iceland
to us, or you came from down thestreet, you have experienced
something negative inassociation with your diagnosis.
That has not changed.
Since I came on the scene 35years ago and was dealing with

(01:10:25):
my own endometriosis.
So our goal is to try to firstlisten to people.
We will review their casereports for free if they want to
see if they could possiblybenefit from surgery.
We will see them in the office.
We will see them by telehealth.
They are free to come.
They do not need to be referred.
They are free to come from anyPlace in the world.

(01:10:47):
They can get in touch with us.
Just go to center for endo.
com E N D O.
We have a ton of informationthere.
There's, a library, a wealth ofinformation on all things
parents, caregivers, coachesother doctors, everybody could
benefit from it.
If there's somebody in theirlife that has, or thinks they
have endo.

(01:11:07):
Check out our website.
We've got a literal ton ofinformation there and we keep it
updated.
We change it as the evidencechanges and knowledge evolves.
We keep it current.
Like I said, you can consultwith Dr.
Yenio and Dr.
Cinervo.
These are world class expertsthat have seen every

(01:11:27):
manifestation of disease you canthink of.
I am not saying that we aremiracle workers.
We are not.
They are human beings.
They are, people who are skilledand highly adept at the art and
science of care for the disease.
But we have pretty good outcomesand a lot of satisfied patients.
Awesome.

(01:11:47):
Can I ask you like what thetypical rate would be roughly so
people can budget?
Yeah.
It really depends.
we're hesitant to give out anykind of ballpark figure because
somebody may come to us that hasreally good insurance and
they'll pay 14, 000 or they maybe somebody who has no insurance
at all that we're going to workwith and maybe they're going to

(01:12:09):
pay 5, 000.
There is a broad amount.
It also matters what type ofcase if you're a joint case of a
bowel resection stage 4endometriosis and a thoracic
case Clearly you're going to paymore because we have a team
there's going to be jointsurgeons involved You're paying
them separately.
That's going to cost more money.
The hospital is separate fromus, but in terms of our fee The

(01:12:34):
most anyone would pay out ofpocket is 21, 000 The most
advanced case you could thinkwith no insurance, no discount
no financial aid from uswhatsoever.
We try to be creative in oursolutions in terms of accepting
care credit cards, things likethat.
And we try to work witheverybody.

(01:12:55):
That would be the absolute maxof the worst scenarios.
And insurance matters.
The type of insurance you have,some of it pays really well, so
we're able to collect a lowerout of pocket cost Because your
insurance is going to pay moreand, we are able to work with
them better.
But folks can go to our cost andinsurance page and, we go

(01:13:18):
through the ringer withinsurance.
I, as somebody who does thirdlevel appeals after being denied
for a patient twice, I can tellyou, we go through the ringer,
we have dedicated staff that's.
All they do is fight withinsurance for our patients.
So we're going to try to helpyou however we can to keep your
costs as low as possible.

(01:13:40):
Awesome.
Thank you so much, Heather.
This was wonderful.
This was fun.
We could do this all day.
I know.
But we've got to work on ourstandup next.
we're going to do a littlestandup.
Peter Pern will be so proud ofme.
I'll come join you in stand up.
He'll be so happy.
It'll be our audience of two.
Thank you.
This was so enjoyable.
I really appreciate it and keepdoing the wonderful work you're

(01:14:00):
doing.
Please.
We need you.
Thank you so much for listeningto my podcast.
It would be a huge help if youcould subscribe and rate the
podcast.
It helps us reach more peopleand make a bigger impact.
I would also love it if youcould join my email list, which
is LinkedIn, the caption forpodcast updates, upcoming offers
and events.
You can also find me on TikTok,YouTube and Instagram at Dr.

(01:14:24):
Mary pt.
Thanks again.