June 12, 2025 • 51 mins
Send us a text with a question or thought on this episode ( We cannot replay from this link)
Dr. Francesco Di Chiara, a leading consultant thoracic surgeon at John Radcliffe Hospital in Oxford, shares his expertise on thoracic endometriosis - when endometriosis affects the chest cavity, diaphragm and lungs. He illuminates the challenges patients face with this often-overlooked manifestation of endometriosis that can cause collapsed lungs, shoulder pain, and breathing difficulties.
• Thoracic endometriosis causes symptoms including pneumothorax (collapsed lung), shoulder pain, hemoptysis (coughing blood), effusions and hemothorax
• 90% of patients with thoracic endometriosis first see orthopedic surgeons for shoulder pain before correct diagnosis
• Symptoms are often "self-limiting" which leads to medical dismissal since they temporarily resolve after each cycle
• Imaging challenges include MRI movement artifacts and that lesions are often thinner than MRI resolution capabilities
• Surgical excision involves a thoracoscopic or robotic approach with most complex procedures involving the diaphragm
• Diaphragmatic surgery requires special consideration for patients planning pregnancy due to added strain on surgically repaired tissues
• Multi-disciplinary care is crucial with thoracic surgeons involved early rather than being called in only after discovery during gynecological surgery
• Dr. Di Chiara classifies thoracic endometriosis lesions in a color spectrum from pink (superficial) to white (scarred) with purple and brown in between
• Thoracic surgeons with endometriosis expertise are rare - patients should seek high-volume centers with established multidisciplinary teams
If you suspect thoracic endometriosis, seek out high-volume endometriosis centers that work directly with thoracic surgeons, and insist on meeting your entire surgical team before committing to treatment.
Website endobattery.com
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Do you sometimes have a hard time breathing,
especially during your cycle, ordo you have that right shoulder
pain that just won't go away?
Maybe your lung collapsesduring your cycle and no one
seems to think it's that big ofa deal, or they just can't
figure it out.
Well, stick around, because DrFrancesco Di Chiara is here to
explain what you couldpotentially have.
(00:21):
Have you ever heard ofcardiothoracic endometriosis, or
extra pelvic endometriosis orextra pelvic endometriosis?
Or maybe you've heard aboutdiaphragmatic endometriosis?
He's here to address these, thesymptoms and how he can address
them.
Stick around.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
(00:42):
growing along the way.
This podcast is not asubstitute for medical advice,
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,
(01:03):
from personal experiences toexpert insights.
I'm your host, alana, and thisis Endobattery charging our
lives when endometriosis drainsus.
Welcome back to Endobattery.
Grab your cup of coffee or yourcup of tea and join me at the
table Today.
I am joined at the table by myguest, dr Francesco Di Chiara, a
(01:27):
leading consultant thoracicsurgeon at the John Radcliffe
Hospital in Oxford and a truepioneer in minimally invasive
chest surgery.
Renowned internationally fordeveloping and refining cutting
edge techniques, includinggroundbreaking single incision
procedure for thoracic outletsyndrome, dr Di Chiara is
transforming the way we approachcomplex thoracic conditions.
(01:48):
With deep expertise in lungcancer, chest wall trauma and
disorders like thoracicendometriosis, he's not only a
gifted surgeon, but also apassionate educator and an
innovator.
I am thrilled to be diving intothis conversation with someone
who is shaping the future forthoracic endometriosis.
Please help me in welcoming DrFrancesco Di Chiara.
Thank you so much, dr Di Chiara.
(02:11):
I'm so thrilled that you satdown with me today.
We met at the summit and it wasone of those moments where I
was just enthralled byeverything that you were talking
about, so I'm honored that yousat down with me at the table
today.
Speaker 2 (02:26):
Well, thanks for your invite.
It's very kind and I'm eager tohear the questions you gathered
, and thanks so much forinviting me.
Speaker 1 (02:37):
Of course, it's just an honor for me.
For anyone that is unfamiliar,what does cardiothoracic surgeon
typically entail, or what iscardiothoracic in general, and
how does it relate toendometriosis?
Speaker 2 (02:53):
So cardiothoracic is a medical term for heart and
lungs or heart and chest.
So it usually according to whena person is studying and
specializing.
For example, in North Americait's normally a general surgery
(03:14):
that develops a skill in cardiacand thoracic surgery.
We'll see in other parts of theworld, for example Northern
Europe, that it will becardiothoracic a standalone
specialty.
But it deals with the diseasesof the heart, revascularization
or disease of the chest, mostcommonly lung cancer and other
(03:36):
malignancies of the chest.
Speaker 1 (03:39):
How does that relate to endometriosis?
Because not a lot of people arevery familiar with that, Even
in the medical industry theykind of are unfamiliar with the
fact that endometriosis canhappen in the heart, in the
lungs, in the diaphragm.
Speaker 2 (03:56):
So yeah, that's a very good question.
The reality is thatendometriosis is a systemic
disease, can go anywhere in thebody.
It's been found in every organ,including the brain, the eye,
and the most commonextra-thoracic, extra-pelvic
location is the diaphragm.
So the thoracic surgeonhistorically has been involved
(04:17):
by gynecologists that advocatedfor excision, but many times it
was an ad hoc involvement andoften also involved during the
operation.
So that does make it quitedifficult for the surgeons and
for the patients to be involvedduring the operation because
(04:38):
there was a surprise atdiaphragmatic disease.
Speaker 1 (04:41):
How did?
Was it a patient?
Was it something that you wereseeing commonly?
Because I'm sure that wasn'tsomething that you thought of
when you first went to medicalschool.
I'm going to do endometriosissurgery, you know, on the heart.
Speaker 2 (04:53):
Conversely to the idea that it happened like this.
So I was preparing my finalboard exam and we were studying,
actually, an American bookcalled Shields it's got these
two big volumes on this and itwas this huge chapter about
plural diseases, pluralconditions, and then benign and
malignant.
And then there was a bigchapter on the forex and then in
(05:19):
this chapter it was analyzingevery little aspect of minute
detail there was this littleparagraph literally like this,
saying that individual femaleduring menstruation may
experience hemothorax.
Full stop, no reference, nofurther explanation.
And I thought to myself this isamazing.
(05:40):
How can I link a hormonalchange to a collapsed lung?
It seems so interesting.
How can I link, like, ahormonal change to collapsed
lung?
It seems so interesting.
And the more I was trying tofind information and interest,
the least I found.
And actually I found someresistance from my colleagues
onto the idea of going acrossyour specialty.
(06:01):
Often karyothoracic is a bit ofa conservative speciality and
collaboration is not always thateasy.
Speaker 1 (06:10):
Yeah, so when you talk pneumothorax, can you
explain that a little bit?
And that's why that kind of ledyou into thinking more about
the cardiothoracic endometriosis.
Speaker 2 (06:21):
Yes, so a pneumothorax is a collapsed lung
and is a common presentation ofthoracic endometriosis.
The collapsed lung can bepartial or complete, and one of
the main myth busters that Ioften explain is that the
typical thoracic endometriosispatients are between 15 and 50
(06:43):
years old, will not be extremelybreathless as often like Google
might suggest when you'relooking for the symptoms,
because they say ourpneumothorax is intense
breathlessness.
It's not true.
The patients can have asignificant pneumothorax and
(07:04):
continue to go.
Especially the endometriosispatients is a subgroup of
individuals that have beencoping with pain and discomfort
since age 12, 11, when they havethe first menses, so they're
actually very resilient to painand discomfort in the chest.
The other common symptom is painin the shoulder, which is
(07:26):
another very big branch ofelements that is often confused.
I would say that I don't havethe full statistic, but I would
say that probably 90% of mypatients have seen either a
chiropractor or an orthopedicsurgeon before seeing me,
because of pain in the shoulderis considered, you know, to go
see somebody fall on theshoulder.
The pain in the shoulder isactually related to the phrenic
(07:49):
nerve, which is the nerve thatcontrols the diaphragm.
The hemidiaphragm has these twobig muscles that control the
breathing at the bottom of ourchest, and so when you have an
irritation or some trouble ofthe phrenic nerve, the pain is
actually perceived up here andin the neck.
So these are the two mainsymptoms, and there's a lot of
(08:12):
other things that can happen.
I would say collapsed lung andpain, shoulder pain and probably
the commonest.
Speaker 1 (08:21):
Are there more symptoms that kind of relate to
that?
Maybe that get misinterpretedas other conditions that people
would not even consider asendometriosis?
Speaker 2 (08:33):
The related thoracic endometriosis.
Yes, there is hemoptysis, whichis coughing up blood, which is
one of the rarest and mostdifficult to diagnose, and when
it comes to thoracic endo,rarity often for me means that
it's not that rare, it's justtrickier to diagnose.
Speaker 1 (08:51):
Right.
Speaker 2 (08:51):
Because when it comes to hemoptysis you can be
confused with disease, withreflux, with anything Right, and
so the patient should keep adiary.
And the hemoptysis does notpresent with every menstruation,
so it's just trickier todiagnose.
And then there is also apresentation with hemothorax,
(09:13):
which is blood in the chest, andagain, extremely rarely this is
a dramatic hemothorax.
Until they get to the OR or tothe ITU, it is a modest
hemothorax, causing a lot ofirritation, a lot of discomfort
and some effusions which isfluid filling up that space at
(09:34):
the bottom of the chest.
These are quite tricky todiagnose and there are lots of
investigations and they're oftendismissed because they're
self-limiting.
So the concept of self-limitingsymptom is probably the biggest
barrier in diagnosing patientswith thoracic endometriosis.
(09:55):
Doctors are trained since theirinfancy of their training that
any symptoms or any sign that isself-limited that basically
resolves itself, or any signthat is self-limited that
basically resolves itself is notsomething that we need to worry
about.
So let's say that a patientcomes to see you and he has a
little bit of a fusion, a bit offluid in the chest, and then
(10:15):
you say, well, a bit concerningfluid in the chest can be even a
sign of malignancy.
Let's repeat it an extra weekand then a week later the
infusion is gone and the familydoctor will feel rightfully in
his own mind to reassure thepatient and say, okay, it was
nothing, because if the infusionhad gone by itself then it was
(10:38):
nothing, nothing to worry aboutanyway, and most of the synthet
drasticriosis are self-limiting.
Speaker 1 (10:48):
Do you find that that causes even more of a delay in
diagnosis, because patients kindof give up, they just live with
it?
Speaker 2 (10:52):
Oh yeah, so that's one of the things I often say
when I'm talking about thoracicendometriosis.
The most knowledgeable andprepared patient I've ever seen
comes with a folder called thechapters of their history, and
they know everything about it.
And if you go through theirhistory, they've been fighting
(11:13):
for 10 years and they had theirfamily's support, their
financial means, see manydoctors and they didn't give up
on frustration.
So that actually I don't findit reassuring.
I find it very concerningbecause that gives me the idea
of the thousands and thousandsof patients they gave up, maybe
(11:36):
year two, year, five, year,seven or something else happened
in their life, another healthproblem or something else, and
I'm seeing only the one thatmanaged to go through 10, 15
years of various attempts.
And then obviously they gothrough phases in which they
feel convinced that theyprobably it's all in my head and
(11:56):
then so it's not in my head,and then you know I can't be,
and then they start fightingagain to find someone.
But it's a very long journeyand so I think we are missing
out.
I don't know how many.
Speaker 1 (12:08):
And that is only you know, those that can afford to
continue that process.
A lot of people in this processbecause this disease is so
expensive, don't have the means.
Don't have the means tocontinue that trajectory.
So that makes it even a littlebit more challenging, I would
assume, for a lot of thosepatients.
Speaker 2 (12:27):
Yeah, yeah.
And sometimes it's even moreheartbreaking because they might
have the means finally to finda specialist that knows about
drastic endo and have thesuspicion, but then to get an
operation might be too expensiveand that's very difficult
sometimes.
Speaker 1 (12:46):
Is there imaging that can help detect thoracic
endometriosis, or is?
That similar to the pelvis,where it's hard.
Speaker 2 (12:55):
It's similar to the pelvis, it probably was.
So the best investigation thatwe have now is the same, is MRI
with specific endometriosisprotocol and with T1 fat
saturated and so on.
So there are two main barriersfor diagnosis.
One is the training ofradiologists, which I often
discuss with because I thinkthey want to find the reassuring
(13:19):
finding of the roundendometrioma, which is a solid,
definite lesion of the roundendometrial.
One, which is a solid, definitelesion, is almost never there in
the chest and they're oftenvery thin and widespread lesions
, the nooks and crannies of thechest.
And the second main barrier isthat the lesions are thin and
(13:40):
below the resolution of the MRI.
And I can add a third barrierto the diagnosis the most common
area where the endometriosis inthe chest is present is the
diaphragm, which is the areawhere there are more movement
artifacts, because MRI is not abreath-hold investigation.
So during an MRI we don't holdour breath for 30 minutes,
(14:02):
obviously, so we keep breathingand the acquisition, although
filtered through algorithms andcomputer system, is still a bit
artifact, movement artifacts.
So what you should have thehighest resolution is actually
where you get the leastresolution.
Speaker 1 (14:18):
Interesting.
How deep can these lesions go,though?
I mean we're talking somesuperficial, but how deep can
they go?
Can, though I mean we'retalking some superficial, but
how deep can they go?
Can they go into the lung?
Can they go even deeper thanthat?
Speaker 2 (14:31):
So they can definitely go through the
diaphragm and I'm trying to worktogether to build a
classification in deepinfiltrative and diaphragmatic
disease and non-deepinfiltrative diaphragmatic
disease, because they tend topresent with different colors
according to if they areinfiltrative or not, and also
(14:55):
the yastric and going the lung.
I've seen anecdotal cases oflung endometriosis.
I was at least lucky enough,when I often don't see any cases
that are severe, but certainlyI've seen in the prura, so the
lining of the lung, and I'veseen a lot of deep infiltrative
endometriosis in the diaphragmand I have at least about five,
(15:22):
six cases of very suspiciousairway endometriosis.
But it's very difficult tocatch because it's although I've
done bronchoscopy, a cameratest of the airway it's normally
located very peripherally wherethe airway is so thin that you
can't fit the bronchoscope ineven using a thin one.
Speaker 1 (15:42):
Interesting, do you?
Okay side note on that?
Maybe this is curiosity from mystandpoint when you're talking
about that For those people whothey.
For myself in particular, I'vebeen diagnosed with vocal cord
dysfunction and it's interestingto me that maybe that's not
always vocal cord dysfunction,maybe it's something more.
(16:03):
Would you have that rightshoulder pain along with that as
well, like that troublebreathing?
It's getting harder type ofthing, or can that?
Happen simultaneously on itsown.
Speaker 2 (16:16):
I think that an individual who has a diagnosis
of endometriosis should have avery high level of suspicion for
symptoms that have this kind ofpattern, in which they tend to
come with the ovulation periodand then they fade and the
patient gets better without anytreatment.
Whatever is the symptom migraine, blurred vision, change in the
(16:39):
voice, coughing up blood, changein the performance, pain in the
shoulder, pain in the diaphragm, pain in the chest, all these
symptoms if they come and gowith the period, they might be
related to extra pelvic endo.
I think we're only scratchingthe surface in these years of
(17:00):
what is the true diagnosis.
I have patients a couple ofthem with this migraine and
since we know that a catamenialepilepsy exists, I wonder also
if it's maybe another form ofpresentation of extra pelvic
endometriosis.
I cannot prove it because,again, mris didn't help.
(17:21):
But it's very interesting alsobecause we know that the patient
, when they are young, thesymptoms tend to have this
pattern and when they get olderthey are chronic because the
pain can escape, you know, canbecome chronic pain.
You know the pattern of chronicpain when it's prolonged and
then it's always there.
(17:42):
But at least initially they canrefer a very good history of
having a pattern of thesesymptoms and for five years it
was coming and going, and thenwith full resolution.
Speaker 1 (17:54):
Yeah, it's interesting.
You said earlier the colorspectrum.
You have this brilliant way thecolor spectrum, the rainbow, if
you will.
Speaker 2 (18:06):
Do you?
Speaker 1 (18:07):
want to explain that a little bit, just because I
think that it would help a lotof people kind of understand the
variations of this disease.
Speaker 2 (18:14):
So it is my very own classification and I've noticed
that there's patterns inpresentational disease.
On the lesion they're pink andsessile.
That seems to be the mostsuperficial.
I get that with a browncauliflower shaped ones that are
very superficial and when I goat the base the diaphragm
(18:37):
underneath looks, or the pleuralooks, completely fine.
Instead there are the purplewhich are hemocytinine-filled
Hemocytinine is like a fancyname for old blood and white,
which we all know why it'sscarred.
Scar is always the end stage ofa very prolonged inflammatory
(18:58):
process in our body.
So the idea that I haven'tproven yet is that this is a
pathway or steps to get to thefinal scarring.
Although there are elementssupporting my theory and
elements not supporting it, I amstill thinking that it shows a
(19:18):
lot of elements supporting thisand at least it gives some way
to approach the diseasesystematically, systemically, in
a way that we know what to do.
Speaker 1 (19:30):
Right.
I mean, it's similar to thepelvis, right?
There's different variations ofthe disease as far as
coloration is concerned, and soI think a lot of times that's
what's missed, even in thepelvic region.
A lot of times is that whatwe're taught is the powder burn
lesions, that's theendometriosis, but it comes in
(19:51):
so many different, various forms, and if you don't know what
you're looking for, it's oftengoing to be missed even by some
specialists, because it variesfor everyone.
So I think it's interestingthat it's similar throughout the
body.
It's not just into the pelvis,you know, it's all the way up,
and I think that's aninteresting thing for us to know
(20:12):
as patients is that if someonesays, no, you don't have this,
it's worth investigating morebecause they may not be able to
identify it.
Which to my next point is is itimportant for someone that is
an excision specialist to have acardiothoracic surgeon be able
(20:32):
to do these surgeries?
Speaker 2 (20:35):
Yeah, I think one of the big discussion I had with
you know, andrea Vidali, which Istarted collaborating also with
Martin Hirsch, is that the roleof thoracic surgeon should come
much earlier and not, as it washistorically, that often or
sometimes was called directly inthe OR when something was found
(20:55):
on the diaphragm.
I think the role of thoracicsurgeon has a huge impact on the
quality of life for the patientand the patient has the right
to speak early with the thoracicsurgeon to make plans ahead to
you know, potential exampleimpact on quality of life
sacrificing the phrenic nerve,plans for fertility because
diaphragmatic surgery can impactpregnancy.
(21:19):
There are elements that need tobe discussed and the patient
should have a consent to allthese aspects.
So I think that the role ofthoracic surgeon should change
and you know multidisciplinarymeeting in which you at least
see the gynecologist andthoracic surgeon or, if you need
bowel resection, thegynecologist and the colorectal
(21:41):
surgeon.
So I think only meeting thelead gynecologist is not the way
to go about this disease in thefuture.
Speaker 1 (21:51):
I agree.
I think everyone has a place inthat room to give the patient
the best quality care that theycan and the best outcome.
Are there risks associated withlike not doing surgery and not
catching that?
I?
Speaker 2 (22:07):
mean I'm sure there's a good question.
So when it comes, for example,to pneumothorax, the obvious
risks in leaving the disease,because the more episodes of
pneumothorax, the more theinside of the chest becomes
scarred and oftentimes the lungsort of tries to heal on its own
.
But it's the same idea of afracture left untreated the bone
(22:32):
doesn't really heal that nicely, isn't it?
It heals all in a funnyposition.
It's the same thing when apneumothorax tries to heal on
its own inside the chest,somewhat the lung comes up, but
the scarring is in the wrongposition and the lung is in an
awful partially expanded way,which then opens the gates to a
(22:55):
lot of complications.
A fusion which is fluid, thefluid can get infected, becomes
an empyema, or repeatedpneumothoraces can break the
adhesion and cause pneumothorax,which is blood.
So there are risks, especiallyin the repeated pneumothoraces.
When it comes to thatparacetamol, it only causes pain
(23:17):
.
I don't think you canunderestimate it, say, oh, it's
only pain, because it's probablythe thing that affects the
quality of life the most.
So eating pain, I don't thinkit's something we should
overlook.
It is for me a very importantindication.
Speaker 1 (23:35):
Yeah, and I think what's interesting too and you
had talked about this before ispregnancy in that as well.
Can you explain that a littlebit and why this is so important
for those who maybe?
Speaker 2 (23:49):
are struggling with fertility.
Yes.
Well, when it comes to thoracicendometriosis and diaphragmatic
endometriosis, so operating onthe diaphragm, we have some data
of operating on the diaphragmand then pregnancy, but these
are not specific of thoracicendometriosis.
These are for another type ofdiaphragmatic surgery.
So, when it comes to thissurgery major diaphragmatic
(24:12):
surgery some recommend includingme to have elective C-sections
because the risk of deliveringthe child in a natural way can
put a lot of strain on thediaphragm.
Now, by general terms, surgeryto the diaphragm is meant to be
(24:35):
solid in physiological condition.
Pregnancy is a situation inwhich the diaphragm is under
extreme strain and this candisrupt reconstruction.
And also, additionally, whenthere are those major
diaphragmatic surgeries in whichthe phrenic nerve may be
sacrificed, then the phrenicnerve is not working and the
(24:58):
diaphragm rises, which issomething that can be managed
when the patient is not pregnant.
When the patient is pregnant,the intra-abdominal pressure
rises significantly and thediaphragm, which has a
non-functioning phrenic nerve,can have a lot of trouble and
they need to see a specialist.
(25:18):
They need to be followed upclosely during the pregnancy.
I don't think I don't want toscare people off about being
pregnant, but they should have aspecialist following them up
during the pregnancy.
I don't think.
I don't want to scare peopleoff about being pregnant, but
they should have a specialistfollowing them up during the
pregnancy Because, if this isnot happening, at least there is
a plan to deliver the baby andthen operate on the mom, rather
than be all a surprise and maybeher being very unwell, very
(25:42):
breathless and in trouble all ofa sudden as a surprise.
Speaker 1 (25:46):
Which goes back to the point earlier of having
someone on your team thatspecializes in this.
Yeah, because those are thepeople that are going to catch
that.
Speaker 2 (25:54):
Yes, because I can't think of all the nuances that a
gynecologist can think of.
I don't think a gynecologist,even with a lot of experience in
diaphragmatic endometriosis,they still, I don't think, have
the training to think of all theimplications and ramifications
that I have in my mind and thatmay be obvious to me.
(26:15):
It may be very tricky to agynecologist.
Speaker 1 (26:17):
Right, we talk about the risks with pregnancy, but
what are the risks for surgerywhen it's not pregnancy?
Are there risks associated, ofcourse, with every surgery?
There is, but what are some ofthe risks?
Maybe?
Speaker 2 (26:31):
Yes.
Well, when we are operatinginside the chest, we have the
most vital structures in thebody except the brain.
So you have the heart, theaorta, the superior vena cava
all the largest blood vessels inthe body.
So clearly, we are in adelicate area in which expertise
(26:52):
and surgical skills and steadyhands are very important.
When it comes to pleuralsurgery, it is normally the
lowest risk type of surgery whenit comes to thoracic endo, and
that there is lung surgery,which is something that thoracic
surgeons perform routinely.
(27:13):
So, in my mind, one aspect thathas to be looked at closely and
the surgeon needs to havespecific training and expertise
is diaphragmatic surgery,because it's not part of every
thoracic surgeon experience andsome surgeons might not ever do
diaphragmatic surgery becauseit's not part of every thoracic
surgeon experience and somesurgeons might not ever do
diaphragmatic surgery in theircareer.
When it came to me, I alreadyhad the interest in
(27:33):
diaphragmatic surgery and thenalso added on into thoracic endo
.
So diaphragmatic surgery is askill in itself because it's
basically between the abdomenand the chest, and so there are
a lot of implications with that.
So you know, the anatomy belowthe right hemidiaphragm is very
different to the anatomy that isbelow the left hemidiaphragm,
(27:55):
and also the appearance of thetwo hemidiaphragm is very
different, because on one sideyou have the heart, on the left,
on the other you have inferiorvena cava and the connection
that the liver has with theunderbelly of the hemidiaphragm.
So there are a lot ofanatomical implications to
consider.
Speaker 1 (28:12):
Right, it's so complex.
This is why we talk about youknow that specialty aspect.
You have your knowledge of theheart, but your pelvis knowledge
is probably not as good asmaybe Vidali or someone like
that.
You know you guys are all sogood, but that you're so much
better together when you worktogether as a team.
Speaker 2 (28:30):
Yeah.
Speaker 1 (28:31):
And that's for the patient.
Speaker 2 (28:33):
Yeah.
So if you take a highly skilledand experienced surgeon and you
show them any surgicaltechnique, any surgical
procedure, like 10 times, let'smake like an experiment.
Now let's say that Vidal showedme 10 easy hysterectomies.
With my 20-year surgicaltraining I could probably
(28:54):
replicate, but will I be able toknow exactly what I'm doing?
In the same way, I could takehim through an easy lobectomy.
But you know, it's not just theacts of doing things, it's the
deep understanding of theanatomical nuances, the
implications, the slightdifference that in doing
(29:17):
something or not doing it has anoutcome.
Because in modern surgerythankfully for the patients we
are not looking at differences.
There are large differences in5%, 10%.
A good surgeon or a bad surgeonnow is quantified in 2% or 0.5%
(29:37):
better outcomes.
Speaker 1 (29:41):
Are there ways that people you know similar to the
pelvis?
A lot of people want to findways that they can help manage
some of the pain without surgery.
Is that poethorasticendometriosis or is that
something that really you needto address because of quality of
life?
Speaker 2 (29:56):
So excision versus medical treatment is a very well
debated topic very well debatedtopic and you know, if you look
at the ASHRAE guidelines thatare in Europe are advocating
lots of steps of medicaltreatments before attending
excision, and will otherpractitioners and gynecologists
(30:22):
offer excision almost asmainstream treatment and then
consolidate with hormonaltreatment.
When it comes to trasequendoand generally the generalities
of medical treatment forendometriosis, I prefer to leave
it with the gynecologist.
I still feel that that's moretheir patch.
(30:43):
But when it comes to trasequome, something I've seen in clinic
and it's my main advice to thepatients is don't consider it as
a long-term solution, becauseyou know, I've seen patients
that maybe they start havingchest symptoms and they went on
some hormonal treatment and whenthey were I don't know, 37, 38,
(31:03):
they decided okay, now I'llstop hormonal treatment, I want
to have children, and all of asudden they started having lung
collapses, horrific chest anddiaphragmatic pain and they
eventually come to me.
It takes two, three years to seea specialist find the right one
and they look inside there'slots of endometriosis and the
clock is ticking and they planfor fertility.
(31:26):
Now they're 40 years old, 41,and are still struggling with
their chest symptoms.
So you see where I'm going.
So my opinion is, if you haveendometriosis and chest symptom
and maybe you have somethingshort term, like you want to get
your degree or getting marriedor something important a few
years of hormonal treatment isprobably a good idea to maybe
(31:50):
achieve your goals and then, inthe long run, maybe consider
having a specialist referral,having a thoracic surgeon
looking inside the chest with anidea of what's going on,
because the hormones sometimesare very good at masking the
symptoms but they don't cure thedisease.
Speaker 1 (32:06):
Right Right, which is probably one of the biggest
misconceptions that we oftenhear right yeah, it's a curative
measure, and I think that's whyit's really important for a lot
of us to understand the factthat a hysterectomy is not going
to cure your thoracicendometriosis, and I think that
this is just further proof ofthat.
(32:27):
It's knowing your team, knowingthat they specialize in
endometriosis specifically andhave really good evidence-based
education and knowledge toaccompany their skill set,
because you can have knowledgeand not skill, but you can also
have the skill and not theknowledge and not skill, but you
can also have the skill and notthe knowledge.
Speaker 2 (32:48):
Yeah, it's true.
When it comes to evidence,nowadays there's a great deal of
debate where the evidence comesfrom Right.
Because there's pharmaceuticalcompanies that are producing the
evidence on various hormonaltreatments.
And when it comes to surgeryand excision, it's a little bit
(33:09):
harder to produce it because youhave a few specialists that do
a lot of surgery but then therest is a high number,
especially with a small numberof procedures.
So to collectively get allthose numbers together and see
the benefit of excision, it is achallenge that we need to face,
(33:32):
the challenge we need to dothis, but it is not an easy task
because even in thoracic endoyou have only a small handful of
thoracic endo doing maybehigher volumes, and then you
have surgeons that maybe do twocases in their career, but you
have hundreds of hundreds ofsurgeons that may do one, two
cases, three cases.
Speaker 1 (33:53):
Yeah, how do you excise thoracic endometriosis?
I mean, we're talking aboutexcision.
I know that scares a lot ofpeople to maybe even think about
.
You're going to cut what out ofme and what organ.
How do you do things like thisand I know that this is
complicated to explain, maybe ifyou don't have a medical degree
but is there a way that youexplain this to your patients as
(34:15):
how you're going to approachexcision?
Speaker 2 (34:17):
Yeah, so the approach is either thoracoscopic or
robotic, which is variousmodality of minimally invasive
surgery, and there are allinvestigations that are
so-called keyhole, which youinsert a camera, and then you
have arms that you know,instruments that you use inside
(34:38):
the chest and we addressfirst-tier mapping, which is a
high definition 4K or 6K camera.
I look at every corner of thechest, we take pictures all over
and then these pictures staywith the patient and with us to
have a database of images tokeep for record.
(34:59):
And then we identify all theareas of suspected thoracic endo
.
When it comes to the pleura, weexcise them, them and we go
down to the thoracic fascia.
The pleura is the lining of thechest cavity.
When it's the surface of thelung, often we use automatic
staplers, which are the same weuse for lung resection.
(35:20):
Fortunately, endometriosis isoften superficial, so the loss
of lung tissue for the patientis minimal and the breathing
capacity is virtually the sameafter resection of thoracic endo
.
The most impactful operation byfar is diaphragmatic resection
because at least when I see deepfilters to the diaphragmatic
(35:42):
endometriosis, I excise it, I gofull thicks and not the
diaphragm.
And this is a sore procedurebecause the more your surgeon
makes an effort to preserve thebranches and fibers of the
phrenic nerve, the more you'regoing to feel the operation
after.
So if you just go and make abig cut with a lot of energy and
(36:09):
then you cut all the branchesof the phrenic nerve, normally
you feel less pain but also lessfunctional phrenic nerve in the
end.
If you instead do like a tissuesparing procedure in which you
just take exactly the area whichis affected and try to spare as
much as possible, you docomplex reconstructions.
You know it's better in thelong run, initially actually the
patient the area which isdefective and try to spare as
much as possible.
(36:29):
You do complex reconstructions.
You know it's better in thelong run.
Initially actually the patientfeels the operation more because
you spare the fronting nervebranches more.
Speaker 1 (36:35):
I mean nerve sparing is so important anywhere in the
body.
There's a reason we have ournerves right.
Speaker 2 (36:42):
Yeah, but unfortunately the structure on
the diaphragm is something wetry to do.
We try also to put like localanesthesia directly on the
frenteal nerve, which seems togive like a little bit of 48, 72
hours, but unfortunately it's alittle bit of a slower
procedure.
It's important that Icommunicate this to the patients
when they are prepared yeah,prepared and amazingly I had
(37:06):
patients that came out ofsurgery and day one they told me
it's achy and I can feel it.
But they said I can feel it'snot classic, I can feel it's not
end of pain.
I can tell this is acute pain,it's like something bites in on
that, but I can feel that it'sgoing to go.
It's nothing to do with thatheat-throbbing, dull ache that
(37:32):
they felt with thoracicendometriosis, which is amazing
because obviously I knowthoracic endometriosis a sore
operation is painful and theyimmediately detect that the pain
has changed.
Speaker 1 (37:45):
I mean, I think that's similar.
You know, I have only hadsurgery in my pelvis really, but
it's a similar thing where youwake up and you're like I'm in
pain.
But it's not the same pain.
I feel so much better, in factthe energy was back more.
And you know, it's just very,very different between healing
pain and your body telling yousomething's wrong pain.
(38:08):
You know, I think that there'sthat somatic pain and which is I
think so interesting.
Speaker 2 (38:13):
It's amazing if you think that in a few years we
went from many doctors evendenying the very existence of
thoracic and diaphragmaticendometriosis, and now we're
discussing a patient realizingwhen they wake up from surgery
that the traumatic pain is gone,the endo pain is gone and now
the feeling that the healingpain and surgical pain is an
(38:35):
amazing transformation in just afew years.
Speaker 1 (38:38):
What is a typical healing time for surgeries like
this, because that is anotherthing people are a little leery
of.
Speaker 2 (38:45):
Yeah, so patients, normally they'll be walking a
few hours after surgery.
So I don't want to scare peopleoff too much about the impact.
So it is manageable and they'llbe walking hours after the
operation.
Normally the lines they have isone chest strain or not.
Always they're going to have achest strain, it depends on the
entity of what they had.
I am trying to minimize theuser chest strain.
(39:07):
Sometimes they don't have anylines.
They're going to have theincisions on the chest.
And there's another thing that,working towards minimizing,
we're trying to do single axissurgery.
So either going on the chestand then through the diaphragm
to look in the abdomen or fromthe abdomen through the
diaphragm to look in the chest.
Try to avoid having dual axisbecause when you operate on
(39:34):
somebody through the abdomenthey breathe with their muscles
in the chest the chest muscles.
When you operate them throughthe chest you use their
abdominal muscle to breathe.
It's intuitive that if you gothrough both cavities it is
difficult to breathe aftersurgery.
So that's the idea.
You know, in recovery you stayin hospital two, three nights
(40:00):
and then they will go home.
We normally say stay off, worka couple of weeks, Okay, and you
know, keep taking painkillersand doing physio.
Speaker 1 (40:10):
The quality of life.
There are restrictions afterendometriosis surgery like this
that maybe they shouldn't goback to.
Speaker 2 (40:19):
Expectation.
Actually they will be doingbetter.
They should have lessrestriction to the quality of
life.
That's the whole purpose of theoperation.
So if, for example, they hadprobably pneumothorax, repeat
the collapsed lung, they mightbe able to finally travel and
take a plane, because they werevery scared to do so because of
(40:39):
their previous collapsed lung,or even travel to somewhere
exotic.
They were scared to do thatbecause of the you know, were
afraid to have a pneumothorax insomewhere that you cannot have,
you know, appropriate care andalso when it comes to cyclic and
diaphragmatic pain.
That should also improve theirquality of life.
Speaker 1 (40:59):
Yeah, this is all really good.
Okay, here's where it getsreally good.
What are you excited for inthoracic endometriosis in
surgery?
What do you see changing?
Speaker 2 (41:12):
I am excited One aspect about international
collaborations to make sure thatsome centers have a high volume
of thoracic endometriosis.
That, I believe, is the way youincrease knowledge in surgery.
Initially, it's very importantto have a few centers have high
volumes.
They can create a pathway andstart the operative procedures
(41:36):
and then they can disseminateout that.
The second aspect I am excitedis education, and I've been
working with European society.
I'm director of the Europeanexam and the Jurassic course and
this year we'll have, for thefirst time, jurassic and the
Machios be part of thecurriculum.
(41:57):
And also I believe that I'mvery excited about this era of
the appropriate and good use ofsocial media, because I think
social media are really the gamechanger because they can reach
anyone Like I don't know.
Tomorrow, anyone a politicianin Polynesia will come see this
(42:18):
interview and they will learnsomething they didn't know, and
I think this is incrediblypowerful too.
And social media, if usedcorrectly, are a force for good.
Speaker 1 (42:32):
Yeah, it can be a great tool.
You have to be mindful of whoyou're listening to.
Obviously that's for anything,right, but it can be such a
great tool and a great way ofgetting really good education
out there and ways to navigateour care better.
(42:53):
What would you tell the patientthat suspects they potentially
have thoracic diaphragmaticdisease?
What would you tell them ifthey are struggling finding the
proper care?
Speaker 2 (43:03):
I would probably advise to seek out a high volume
center in endometriosis and askthem if they have contact with
the thoracic surgeon that alsocan see them, because often the
answer is yes, we have athoracic surgeon that works with
(43:26):
us.
Don't worry, when we need them,we call it or we call her.
That's not the answer that Iwould be satisfied with.
I would like to meet with theperson and have an encounter
with the person and see what theanswer is going to be, what
experience, what their ideas andand the surgical plans as well.
Speaker 1 (43:46):
Yeah, it's key to know your team and if they can
follow you in everything you doand continue working with you,
because this is you know, a lotof times we talk about this
disease as it being, you know, awhole body.
It's a whole life disease too.
You have to be aware ofeverything that kind of
coincides with this disease,which are there other diseases
(44:08):
that tend to like to partnerwith cardiothoracic
endometriosis?
Are there things that you seein correlation?
Speaker 2 (44:16):
Well, thoracic endometriosis in general is an
association with many otherconditions LN dollars,
connective tissue orfibromyalgia.
Although, when it comes to thischronic pain condition, I often
wonder if it's a chicken andegg situation which, when you
have chronic pain in the chestand the abdomen, it's easy to
(44:37):
diagnose also a pain in themuscles or the joints, because
the body is all connected and,for example, having adhesions in
the abdomen can lead to the bigmuscle at the bottom of our
lumbar spine which is the aliostoas muscles, and this can
create a whole lot of back painand shoulder pain and other
(44:59):
issues.
So, you know, also sadly, isdepression because and anxiety,
because chronic pain has a hugeimpact on our mental health.
So, yeah, it's connected withvarious aspects and also the
anxiety of having a repeatedneural thorax and being
dismissed, having chest pain orshoulder pain.
(45:19):
I think that medical dismissaland gaslighting is a disease in
itself, because you're in pain,you're in trouble and you seek
out the expert's opinion and theexpert's opinion is oh, it's
all in your head.
I often admire the patient thatwent on for years because I'm
(45:40):
not sure if I would do the same.
I, you know, maybe seek onespecialist and another one and
they tell me no, look, don'tworry, it's all fine, it's all
in your head.
Just take this pill.
It will help you sleep and beless anxious and go ahead with
your life.
I probably would listen.
Speaker 1 (45:58):
And that goes to the fact that we are loyal a lot of
times to our medical providers,whether they're serving us well
or not.
Sometimes and that's what'sreally hard for patients
specifically is that we thegaslighting.
It becomes a mental struggleand then it kind of exacerbates
the depression anxiety even more, and that's what's so
(46:18):
challenging, and especially whenyou have complex disease that
isn't widely recognized.
I'm sure in this case you knowa lot of your patients have
experienced that where they'reconstantly seeking care for
something and being told thatit's nothing, it's just anxiety,
it's just depression, which itturns into.
That you know.
(46:39):
So I think your job is evenmore challenging than probably
some other areas of medical carebecause you're seeing patients
who have been doing this foryears.
You're not only a doctor, asurgeon, but you in some ways
are the one that's helping theirmental health because you
(46:59):
believe them, you know, andfinding them a better care team
that will believe them and notjust settle for it's in your
head or you just have anxiety.
So I have to imagine that takesa toll on you sometimes too is
to see your patients walkthrough that.
Speaker 2 (47:15):
It is.
It is.
You know, oftentimes they aredifficult.
I mean, I would say everyone isvery nice.
It's just that it took a tollon my trust and faith in my own
medical profession listening toall these stories.
But at the same time I don'tfeel I want to chastise my
colleagues, because they weretrained to do diagnosis and they
(47:39):
were also trained not tobelieve every symptom because
they felt especially the oldergeneration of doctors that they
were the one that will filterthrough the noise and then find
the diagnosis.
I feel that older generationdoctors they were not everyone,
(48:03):
of course, but they were moreabout saving lives, the
mortality of things.
Now medicine is more aboutquality of life, in which it's
not all important.
You recognize an importantsymptom but if it is a great
deal for the patient, if thepatient feels it as they're
perceiving that, then it's thebig deal.
It's important, regardless ofthe fact that maybe not relevant
(48:26):
for what you were trained as adoctor.
I think there's a shift in themedical profession understanding
what's relevant.
Speaker 1 (48:35):
Yeah, I think there's also a shift too.
I mean, I think there'sprobably.
This could go either way, but Ithink a lot of providers are
coming to terms with the factthat the patients are becoming
more savvy, and so theythemselves are becoming more
curious, and maybe not even morecurious, but they're like, well
, they're saying this over andover again.
I got to figure out why, youknow so.
(48:56):
I think that it is shifting alittle bit.
Speaker 2 (49:00):
Yeah.
So when you mentioned beforegoing back to your previous
question what would you want foryour doctor, you know, thoracic
surgeon or gynecologist?
I think for me, one of the mostimportant green flags when you
go and see a specialist is aspecialist that doesn't mind to
be challenged and doesn't getannoyed when you mention Dr
Google.
Speaker 1 (49:20):
Yes.
Speaker 2 (49:20):
Because I actually like it, because it keeps me
always informed.
It happens very rarely that thepatient comes up with something
that I didn't hear before, butnonetheless I still enjoy it
because I like when the patientsare knowledgeable and they come
up with their own ideas.
And if the specialist offersjust listens for the first bit
(49:45):
of the consultation, normallyyou establish their reports of
trust and people relax and opensup.
If especially startsimmediately being defensive and
seems annoyed, I think is a signof a bit of your shaky
knowledge and not so confidencein that level of depth of
(50:06):
knowledge, right.
So I would advise the patient.
You know he has a green flag,he's a doctor, doesn't mind to
be challenged.
Speaker 1 (50:13):
Yeah, I agree, because we're all complex humans
.
We all deserve that bit ofcuriosity in our care right,
having a provider go alongsideyou with that means a lot to us
as patients, but also it canchange the face of medical care
across the board, which is whyI'm excited that you are doing
what you're doing, because thatcuriosity, that drive to
(50:36):
continue seeking better care forthe patients and understanding
the disease, understanding thepatients with the disease and
all the nuances that come withit, are imperative for the
future of endometriosis.
So thank you for continuing tobe curious, thank you for taking
the time to sit down andexplain this to people so that
(50:57):
they have better knowledge andhave a better understanding of
potential risks of extra pelvicendometriosis.
And so thank you so much fortaking the time.
I know it's precious.
Speaker 2 (51:09):
Pleasure.
Thanks so much.
Speaker 1 (51:12):
Absolutely.
Thank you Until next time.
Everyone continue advocatingfor you and for others.
Do you sometimes have a hard time breathing,
especially during your cycle, ordo you have that right shoulder
pain that just won't go away?
Maybe your lung collapsesduring your cycle and no one
seems to think it's that big ofa deal, or they just can't
figure it out.
Well, stick around, because DrFrancesco Di Chiara is here to
explain what you couldpotentially have.
(00:21):
Have you ever heard ofcardiothoracic endometriosis, or
extra pelvic endometriosis orextra pelvic endometriosis?
Or maybe you've heard aboutdiaphragmatic endometriosis?
He's here to address these, thesymptoms and how he can address
them.
Stick around.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
(00:42):
growing along the way.
This podcast is not asubstitute for medical advice,
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,
(01:03):
from personal experiences toexpert insights.
I'm your host, alana, and thisis Endobattery charging our
lives when endometriosis drainsus.
Welcome back to Endobattery.
Grab your cup of coffee or yourcup of tea and join me at the
table Today.
I am joined at the table by myguest, dr Francesco Di Chiara, a
(01:27):
leading consultant thoracicsurgeon at the John Radcliffe
Hospital in Oxford and a truepioneer in minimally invasive
chest surgery.
Renowned internationally fordeveloping and refining cutting
edge techniques, includinggroundbreaking single incision
procedure for thoracic outletsyndrome, dr Di Chiara is
transforming the way we approachcomplex thoracic conditions.
(01:48):
With deep expertise in lungcancer, chest wall trauma and
disorders like thoracicendometriosis, he's not only a
gifted surgeon, but also apassionate educator and an
innovator.
I am thrilled to be diving intothis conversation with someone
who is shaping the future forthoracic endometriosis.
Please help me in welcoming DrFrancesco Di Chiara.
Thank you so much, dr Di Chiara.
(02:11):
I'm so thrilled that you satdown with me today.
We met at the summit and it wasone of those moments where I
was just enthralled byeverything that you were talking
about, so I'm honored that yousat down with me at the table
today.
Speaker 2 (02:26):
Well, thanks for your invite.
It's very kind and I'm eager tohear the questions you gathered
, and thanks so much forinviting me.
Speaker 1 (02:37):
Of course, it's just an honor for me.
For anyone that is unfamiliar,what does cardiothoracic surgeon
typically entail, or what iscardiothoracic in general, and
how does it relate toendometriosis?
Speaker 2 (02:53):
So cardiothoracic is a medical term for heart and
lungs or heart and chest.
So it usually according to whena person is studying and
specializing.
For example, in North Americait's normally a general surgery
(03:14):
that develops a skill in cardiacand thoracic surgery.
We'll see in other parts of theworld, for example Northern
Europe, that it will becardiothoracic a standalone
specialty.
But it deals with the diseasesof the heart, revascularization
or disease of the chest, mostcommonly lung cancer and other
(03:36):
malignancies of the chest.
Speaker 1 (03:39):
How does that relate to endometriosis?
Because not a lot of people arevery familiar with that, Even
in the medical industry theykind of are unfamiliar with the
fact that endometriosis canhappen in the heart, in the
lungs, in the diaphragm.
Speaker 2 (03:56):
So yeah, that's a very good question.
The reality is thatendometriosis is a systemic
disease, can go anywhere in thebody.
It's been found in every organ,including the brain, the eye,
and the most commonextra-thoracic, extra-pelvic
location is the diaphragm.
So the thoracic surgeonhistorically has been involved
(04:17):
by gynecologists that advocatedfor excision, but many times it
was an ad hoc involvement andoften also involved during the
operation.
So that does make it quitedifficult for the surgeons and
for the patients to be involvedduring the operation because
(04:38):
there was a surprise atdiaphragmatic disease.
Speaker 1 (04:41):
How did?
Was it a patient?
Was it something that you wereseeing commonly?
Because I'm sure that wasn'tsomething that you thought of
when you first went to medicalschool.
I'm going to do endometriosissurgery, you know, on the heart.
Speaker 2 (04:53):
Conversely to the idea that it happened like this.
So I was preparing my finalboard exam and we were studying,
actually, an American bookcalled Shields it's got these
two big volumes on this and itwas this huge chapter about
plural diseases, pluralconditions, and then benign and
malignant.
And then there was a bigchapter on the forex and then in
(05:19):
this chapter it was analyzingevery little aspect of minute
detail there was this littleparagraph literally like this,
saying that individual femaleduring menstruation may
experience hemothorax.
Full stop, no reference, nofurther explanation.
And I thought to myself this isamazing.
(05:40):
How can I link a hormonalchange to a collapsed lung?
It seems so interesting.
How can I link, like, ahormonal change to collapsed
lung?
It seems so interesting.
And the more I was trying tofind information and interest,
the least I found.
And actually I found someresistance from my colleagues
onto the idea of going acrossyour specialty.
(06:01):
Often karyothoracic is a bit ofa conservative speciality and
collaboration is not always thateasy.
Speaker 1 (06:10):
Yeah, so when you talk pneumothorax, can you
explain that a little bit?
And that's why that kind of ledyou into thinking more about
the cardiothoracic endometriosis.
Speaker 2 (06:21):
Yes, so a pneumothorax is a collapsed lung
and is a common presentation ofthoracic endometriosis.
The collapsed lung can bepartial or complete, and one of
the main myth busters that Ioften explain is that the
typical thoracic endometriosispatients are between 15 and 50
(06:43):
years old, will not be extremelybreathless as often like Google
might suggest when you'relooking for the symptoms,
because they say ourpneumothorax is intense
breathlessness.
It's not true.
The patients can have asignificant pneumothorax and
(07:04):
continue to go.
Especially the endometriosispatients is a subgroup of
individuals that have beencoping with pain and discomfort
since age 12, 11, when they havethe first menses, so they're
actually very resilient to painand discomfort in the chest.
The other common symptom is painin the shoulder, which is
(07:26):
another very big branch ofelements that is often confused.
I would say that I don't havethe full statistic, but I would
say that probably 90% of mypatients have seen either a
chiropractor or an orthopedicsurgeon before seeing me,
because of pain in the shoulderis considered, you know, to go
see somebody fall on theshoulder.
The pain in the shoulder isactually related to the phrenic
(07:49):
nerve, which is the nerve thatcontrols the diaphragm.
The hemidiaphragm has these twobig muscles that control the
breathing at the bottom of ourchest, and so when you have an
irritation or some trouble ofthe phrenic nerve, the pain is
actually perceived up here andin the neck.
So these are the two mainsymptoms, and there's a lot of
(08:12):
other things that can happen.
I would say collapsed lung andpain, shoulder pain and probably
the commonest.
Speaker 1 (08:21):
Are there more symptoms that kind of relate to
that?
Maybe that get misinterpretedas other conditions that people
would not even consider asendometriosis?
Speaker 2 (08:33):
The related thoracic endometriosis.
Yes, there is hemoptysis, whichis coughing up blood, which is
one of the rarest and mostdifficult to diagnose, and when
it comes to thoracic endo,rarity often for me means that
it's not that rare, it's justtrickier to diagnose.
Speaker 1 (08:51):
Right.
Speaker 2 (08:51):
Because when it comes to hemoptysis you can be
confused with disease, withreflux, with anything Right, and
so the patient should keep adiary.
And the hemoptysis does notpresent with every menstruation,
so it's just trickier todiagnose.
And then there is also apresentation with hemothorax,
(09:13):
which is blood in the chest, andagain, extremely rarely this is
a dramatic hemothorax.
Until they get to the OR or tothe ITU, it is a modest
hemothorax, causing a lot ofirritation, a lot of discomfort
and some effusions which isfluid filling up that space at
(09:34):
the bottom of the chest.
These are quite tricky todiagnose and there are lots of
investigations and they're oftendismissed because they're
self-limiting.
So the concept of self-limitingsymptom is probably the biggest
barrier in diagnosing patientswith thoracic endometriosis.
(09:55):
Doctors are trained since theirinfancy of their training that
any symptoms or any sign that isself-limited that basically
resolves itself, or any signthat is self-limited that
basically resolves itself is notsomething that we need to worry
about.
So let's say that a patientcomes to see you and he has a
little bit of a fusion, a bit offluid in the chest, and then
(10:15):
you say, well, a bit concerningfluid in the chest can be even a
sign of malignancy.
Let's repeat it an extra weekand then a week later the
infusion is gone and the familydoctor will feel rightfully in
his own mind to reassure thepatient and say, okay, it was
nothing, because if the infusionhad gone by itself then it was
(10:38):
nothing, nothing to worry aboutanyway, and most of the synthet
drasticriosis are self-limiting.
Speaker 1 (10:48):
Do you find that that causes even more of a delay in
diagnosis, because patients kindof give up, they just live with
it?
Speaker 2 (10:52):
Oh yeah, so that's one of the things I often say
when I'm talking about thoracicendometriosis.
The most knowledgeable andprepared patient I've ever seen
comes with a folder called thechapters of their history, and
they know everything about it.
And if you go through theirhistory, they've been fighting
(11:13):
for 10 years and they had theirfamily's support, their
financial means, see manydoctors and they didn't give up
on frustration.
So that actually I don't findit reassuring.
I find it very concerningbecause that gives me the idea
of the thousands and thousandsof patients they gave up, maybe
(11:36):
year two, year, five, year,seven or something else happened
in their life, another healthproblem or something else, and
I'm seeing only the one thatmanaged to go through 10, 15
years of various attempts.
And then obviously they gothrough phases in which they
feel convinced that theyprobably it's all in my head and
(11:56):
then so it's not in my head,and then you know I can't be,
and then they start fightingagain to find someone.
But it's a very long journeyand so I think we are missing
out.
I don't know how many.
Speaker 1 (12:08):
And that is only you know, those that can afford to
continue that process.
A lot of people in this processbecause this disease is so
expensive, don't have the means.
Don't have the means tocontinue that trajectory.
So that makes it even a littlebit more challenging, I would
assume, for a lot of thosepatients.
Speaker 2 (12:27):
Yeah, yeah.
And sometimes it's even moreheartbreaking because they might
have the means finally to finda specialist that knows about
drastic endo and have thesuspicion, but then to get an
operation might be too expensiveand that's very difficult
sometimes.
Speaker 1 (12:46):
Is there imaging that can help detect thoracic
endometriosis, or is?
That similar to the pelvis,where it's hard.
Speaker 2 (12:55):
It's similar to the pelvis, it probably was.
So the best investigation thatwe have now is the same, is MRI
with specific endometriosisprotocol and with T1 fat
saturated and so on.
So there are two main barriersfor diagnosis.
One is the training ofradiologists, which I often
discuss with because I thinkthey want to find the reassuring
(13:19):
finding of the roundendometrioma, which is a solid,
definite lesion of the roundendometrial.
One, which is a solid, definitelesion, is almost never there in
the chest and they're oftenvery thin and widespread lesions
, the nooks and crannies of thechest.
And the second main barrier isthat the lesions are thin and
(13:40):
below the resolution of the MRI.
And I can add a third barrierto the diagnosis the most common
area where the endometriosis inthe chest is present is the
diaphragm, which is the areawhere there are more movement
artifacts, because MRI is not abreath-hold investigation.
So during an MRI we don't holdour breath for 30 minutes,
(14:02):
obviously, so we keep breathingand the acquisition, although
filtered through algorithms andcomputer system, is still a bit
artifact, movement artifacts.
So what you should have thehighest resolution is actually
where you get the leastresolution.
Speaker 1 (14:18):
Interesting.
How deep can these lesions go,though?
I mean we're talking somesuperficial, but how deep can
they go?
Can, though I mean we'retalking some superficial, but
how deep can they go?
Can they go into the lung?
Can they go even deeper thanthat?
Speaker 2 (14:31):
So they can definitely go through the
diaphragm and I'm trying to worktogether to build a
classification in deepinfiltrative and diaphragmatic
disease and non-deepinfiltrative diaphragmatic
disease, because they tend topresent with different colors
according to if they areinfiltrative or not, and also
(14:55):
the yastric and going the lung.
I've seen anecdotal cases oflung endometriosis.
I was at least lucky enough,when I often don't see any cases
that are severe, but certainlyI've seen in the prura, so the
lining of the lung, and I'veseen a lot of deep infiltrative
endometriosis in the diaphragmand I have at least about five,
(15:22):
six cases of very suspiciousairway endometriosis.
But it's very difficult tocatch because it's although I've
done bronchoscopy, a cameratest of the airway it's normally
located very peripherally wherethe airway is so thin that you
can't fit the bronchoscope ineven using a thin one.
Speaker 1 (15:42):
Interesting, do you?
Okay side note on that?
Maybe this is curiosity from mystandpoint when you're talking
about that For those people whothey.
For myself in particular, I'vebeen diagnosed with vocal cord
dysfunction and it's interestingto me that maybe that's not
always vocal cord dysfunction,maybe it's something more.
(16:03):
Would you have that rightshoulder pain along with that as
well, like that troublebreathing?
It's getting harder type ofthing, or can that?
Happen simultaneously on itsown.
Speaker 2 (16:16):
I think that an individual who has a diagnosis
of endometriosis should have avery high level of suspicion for
symptoms that have this kind ofpattern, in which they tend to
come with the ovulation periodand then they fade and the
patient gets better without anytreatment.
Whatever is the symptom migraine, blurred vision, change in the
(16:39):
voice, coughing up blood, changein the performance, pain in the
shoulder, pain in the diaphragm, pain in the chest, all these
symptoms if they come and gowith the period, they might be
related to extra pelvic endo.
I think we're only scratchingthe surface in these years of
(17:00):
what is the true diagnosis.
I have patients a couple ofthem with this migraine and
since we know that a catamenialepilepsy exists, I wonder also
if it's maybe another form ofpresentation of extra pelvic
endometriosis.
I cannot prove it because,again, mris didn't help.
(17:21):
But it's very interesting alsobecause we know that the patient
, when they are young, thesymptoms tend to have this
pattern and when they get olderthey are chronic because the
pain can escape, you know, canbecome chronic pain.
You know the pattern of chronicpain when it's prolonged and
then it's always there.
(17:42):
But at least initially they canrefer a very good history of
having a pattern of thesesymptoms and for five years it
was coming and going, and thenwith full resolution.
Speaker 1 (17:54):
Yeah, it's interesting.
You said earlier the colorspectrum.
You have this brilliant way thecolor spectrum, the rainbow, if
you will.
Speaker 2 (18:06):
Do you?
Speaker 1 (18:07):
want to explain that a little bit, just because I
think that it would help a lotof people kind of understand the
variations of this disease.
Speaker 2 (18:14):
So it is my very own classification and I've noticed
that there's patterns inpresentational disease.
On the lesion they're pink andsessile.
That seems to be the mostsuperficial.
I get that with a browncauliflower shaped ones that are
very superficial and when I goat the base the diaphragm
(18:37):
underneath looks, or the pleuralooks, completely fine.
Instead there are the purplewhich are hemocytinine-filled
Hemocytinine is like a fancyname for old blood and white,
which we all know why it'sscarred.
Scar is always the end stage ofa very prolonged inflammatory
(18:58):
process in our body.
So the idea that I haven'tproven yet is that this is a
pathway or steps to get to thefinal scarring.
Although there are elementssupporting my theory and
elements not supporting it, I amstill thinking that it shows a
(19:18):
lot of elements supporting thisand at least it gives some way
to approach the diseasesystematically, systemically, in
a way that we know what to do.
Speaker 1 (19:30):
Right.
I mean, it's similar to thepelvis, right?
There's different variations ofthe disease as far as
coloration is concerned, and soI think a lot of times that's
what's missed, even in thepelvic region.
A lot of times is that whatwe're taught is the powder burn
lesions, that's theendometriosis, but it comes in
(19:51):
so many different, various forms, and if you don't know what
you're looking for, it's oftengoing to be missed even by some
specialists, because it variesfor everyone.
So I think it's interestingthat it's similar throughout the
body.
It's not just into the pelvis,you know, it's all the way up,
and I think that's aninteresting thing for us to know
(20:12):
as patients is that if someonesays, no, you don't have this,
it's worth investigating morebecause they may not be able to
identify it.
Which to my next point is is itimportant for someone that is
an excision specialist to have acardiothoracic surgeon be able
(20:32):
to do these surgeries?
Speaker 2 (20:35):
Yeah, I think one of the big discussion I had with
you know, andrea Vidali, which Istarted collaborating also with
Martin Hirsch, is that the roleof thoracic surgeon should come
much earlier and not, as it washistorically, that often or
sometimes was called directly inthe OR when something was found
(20:55):
on the diaphragm.
I think the role of thoracicsurgeon has a huge impact on the
quality of life for the patientand the patient has the right
to speak early with the thoracicsurgeon to make plans ahead to
you know, potential exampleimpact on quality of life
sacrificing the phrenic nerve,plans for fertility because
diaphragmatic surgery can impactpregnancy.
(21:19):
There are elements that need tobe discussed and the patient
should have a consent to allthese aspects.
So I think that the role ofthoracic surgeon should change
and you know multidisciplinarymeeting in which you at least
see the gynecologist andthoracic surgeon or, if you need
bowel resection, thegynecologist and the colorectal
(21:41):
surgeon.
So I think only meeting thelead gynecologist is not the way
to go about this disease in thefuture.
Speaker 1 (21:51):
I agree.
I think everyone has a place inthat room to give the patient
the best quality care that theycan and the best outcome.
Are there risks associated withlike not doing surgery and not
catching that?
I?
Speaker 2 (22:07):
mean I'm sure there's a good question.
So when it comes, for example,to pneumothorax, the obvious
risks in leaving the disease,because the more episodes of
pneumothorax, the more theinside of the chest becomes
scarred and oftentimes the lungsort of tries to heal on its own
.
But it's the same idea of afracture left untreated the bone
(22:32):
doesn't really heal that nicely, isn't it?
It heals all in a funnyposition.
It's the same thing when apneumothorax tries to heal on
its own inside the chest,somewhat the lung comes up, but
the scarring is in the wrongposition and the lung is in an
awful partially expanded way,which then opens the gates to a
(22:55):
lot of complications.
A fusion which is fluid, thefluid can get infected, becomes
an empyema, or repeatedpneumothoraces can break the
adhesion and cause pneumothorax,which is blood.
So there are risks, especiallyin the repeated pneumothoraces.
When it comes to thatparacetamol, it only causes pain
(23:17):
.
I don't think you canunderestimate it, say, oh, it's
only pain, because it's probablythe thing that affects the
quality of life the most.
So eating pain, I don't thinkit's something we should
overlook.
It is for me a very importantindication.
Speaker 1 (23:35):
Yeah, and I think what's interesting too and you
had talked about this before ispregnancy in that as well.
Can you explain that a littlebit and why this is so important
for those who maybe?
Speaker 2 (23:49):
are struggling with fertility.
Yes.
Well, when it comes to thoracicendometriosis and diaphragmatic
endometriosis, so operating onthe diaphragm, we have some data
of operating on the diaphragmand then pregnancy, but these
are not specific of thoracicendometriosis.
These are for another type ofdiaphragmatic surgery.
So, when it comes to thissurgery major diaphragmatic
(24:12):
surgery some recommend includingme to have elective C-sections
because the risk of deliveringthe child in a natural way can
put a lot of strain on thediaphragm.
Now, by general terms, surgeryto the diaphragm is meant to be
(24:35):
solid in physiological condition.
Pregnancy is a situation inwhich the diaphragm is under
extreme strain and this candisrupt reconstruction.
And also, additionally, whenthere are those major
diaphragmatic surgeries in whichthe phrenic nerve may be
sacrificed, then the phrenicnerve is not working and the
(24:58):
diaphragm rises, which issomething that can be managed
when the patient is not pregnant.
When the patient is pregnant,the intra-abdominal pressure
rises significantly and thediaphragm, which has a
non-functioning phrenic nerve,can have a lot of trouble and
they need to see a specialist.
(25:18):
They need to be followed upclosely during the pregnancy.
I don't think I don't want toscare people off about being
pregnant, but they should have aspecialist following them up
during the pregnancy.
I don't think.
I don't want to scare peopleoff about being pregnant, but
they should have a specialistfollowing them up during the
pregnancy Because, if this isnot happening, at least there is
a plan to deliver the baby andthen operate on the mom, rather
than be all a surprise and maybeher being very unwell, very
(25:42):
breathless and in trouble all ofa sudden as a surprise.
Speaker 1 (25:46):
Which goes back to the point earlier of having
someone on your team thatspecializes in this.
Yeah, because those are thepeople that are going to catch
that.
Speaker 2 (25:54):
Yes, because I can't think of all the nuances that a
gynecologist can think of.
I don't think a gynecologist,even with a lot of experience in
diaphragmatic endometriosis,they still, I don't think, have
the training to think of all theimplications and ramifications
that I have in my mind and thatmay be obvious to me.
(26:15):
It may be very tricky to agynecologist.
Speaker 1 (26:17):
Right, we talk about the risks with pregnancy, but
what are the risks for surgerywhen it's not pregnancy?
Are there risks associated, ofcourse, with every surgery?
There is, but what are some ofthe risks?
Maybe?
Speaker 2 (26:31):
Yes.
Well, when we are operatinginside the chest, we have the
most vital structures in thebody except the brain.
So you have the heart, theaorta, the superior vena cava
all the largest blood vessels inthe body.
So clearly, we are in adelicate area in which expertise
(26:52):
and surgical skills and steadyhands are very important.
When it comes to pleuralsurgery, it is normally the
lowest risk type of surgery whenit comes to thoracic endo, and
that there is lung surgery,which is something that thoracic
surgeons perform routinely.
(27:13):
So, in my mind, one aspect thathas to be looked at closely and
the surgeon needs to havespecific training and expertise
is diaphragmatic surgery,because it's not part of every
thoracic surgeon experience andsome surgeons might not ever do
diaphragmatic surgery becauseit's not part of every thoracic
surgeon experience and somesurgeons might not ever do
diaphragmatic surgery in theircareer.
When it came to me, I alreadyhad the interest in
(27:33):
diaphragmatic surgery and thenalso added on into thoracic endo
.
So diaphragmatic surgery is askill in itself because it's
basically between the abdomenand the chest, and so there are
a lot of implications with that.
So you know, the anatomy belowthe right hemidiaphragm is very
different to the anatomy that isbelow the left hemidiaphragm,
(27:55):
and also the appearance of thetwo hemidiaphragm is very
different, because on one sideyou have the heart, on the left,
on the other you have inferiorvena cava and the connection
that the liver has with theunderbelly of the hemidiaphragm.
So there are a lot ofanatomical implications to
consider.
Speaker 1 (28:12):
Right, it's so complex.
This is why we talk about youknow that specialty aspect.
You have your knowledge of theheart, but your pelvis knowledge
is probably not as good asmaybe Vidali or someone like
that.
You know you guys are all sogood, but that you're so much
better together when you worktogether as a team.
Speaker 2 (28:30):
Yeah.
Speaker 1 (28:31):
And that's for the patient.
Speaker 2 (28:33):
Yeah.
So if you take a highly skilledand experienced surgeon and you
show them any surgicaltechnique, any surgical
procedure, like 10 times, let'smake like an experiment.
Now let's say that Vidal showedme 10 easy hysterectomies.
With my 20-year surgicaltraining I could probably
(28:54):
replicate, but will I be able toknow exactly what I'm doing?
In the same way, I could takehim through an easy lobectomy.
But you know, it's not just theacts of doing things, it's the
deep understanding of theanatomical nuances, the
implications, the slightdifference that in doing
(29:17):
something or not doing it has anoutcome.
Because in modern surgerythankfully for the patients we
are not looking at differences.
There are large differences in5%, 10%.
A good surgeon or a bad surgeonnow is quantified in 2% or 0.5%
(29:37):
better outcomes.
Speaker 1 (29:41):
Are there ways that people you know similar to the
pelvis?
A lot of people want to findways that they can help manage
some of the pain without surgery.
Is that poethorasticendometriosis or is that
something that really you needto address because of quality of
life?
Speaker 2 (29:56):
So excision versus medical treatment is a very well
debated topic very well debatedtopic and you know, if you look
at the ASHRAE guidelines thatare in Europe are advocating
lots of steps of medicaltreatments before attending
excision, and will otherpractitioners and gynecologists
(30:22):
offer excision almost asmainstream treatment and then
consolidate with hormonaltreatment.
When it comes to trasequendoand generally the generalities
of medical treatment forendometriosis, I prefer to leave
it with the gynecologist.
I still feel that that's moretheir patch.
(30:43):
But when it comes to trasequome, something I've seen in clinic
and it's my main advice to thepatients is don't consider it as
a long-term solution, becauseyou know, I've seen patients
that maybe they start havingchest symptoms and they went on
some hormonal treatment and whenthey were I don't know, 37, 38,
(31:03):
they decided okay, now I'llstop hormonal treatment, I want
to have children, and all of asudden they started having lung
collapses, horrific chest anddiaphragmatic pain and they
eventually come to me.
It takes two, three years to seea specialist find the right one
and they look inside there'slots of endometriosis and the
clock is ticking and they planfor fertility.
(31:26):
Now they're 40 years old, 41,and are still struggling with
their chest symptoms.
So you see where I'm going.
So my opinion is, if you haveendometriosis and chest symptom
and maybe you have somethingshort term, like you want to get
your degree or getting marriedor something important a few
years of hormonal treatment isprobably a good idea to maybe
(31:50):
achieve your goals and then, inthe long run, maybe consider
having a specialist referral,having a thoracic surgeon
looking inside the chest with anidea of what's going on,
because the hormones sometimesare very good at masking the
symptoms but they don't cure thedisease.
Speaker 1 (32:06):
Right Right, which is probably one of the biggest
misconceptions that we oftenhear right yeah, it's a curative
measure, and I think that's whyit's really important for a lot
of us to understand the factthat a hysterectomy is not going
to cure your thoracicendometriosis, and I think that
this is just further proof ofthat.
(32:27):
It's knowing your team, knowingthat they specialize in
endometriosis specifically andhave really good evidence-based
education and knowledge toaccompany their skill set,
because you can have knowledgeand not skill, but you can also
have the skill and not theknowledge and not skill, but you
can also have the skill and notthe knowledge.
Speaker 2 (32:48):
Yeah, it's true.
When it comes to evidence,nowadays there's a great deal of
debate where the evidence comesfrom Right.
Because there's pharmaceuticalcompanies that are producing the
evidence on various hormonaltreatments.
And when it comes to surgeryand excision, it's a little bit
(33:09):
harder to produce it because youhave a few specialists that do
a lot of surgery but then therest is a high number,
especially with a small numberof procedures.
So to collectively get allthose numbers together and see
the benefit of excision, it is achallenge that we need to face,
(33:32):
the challenge we need to dothis, but it is not an easy task
because even in thoracic endoyou have only a small handful of
thoracic endo doing maybehigher volumes, and then you
have surgeons that maybe do twocases in their career, but you
have hundreds of hundreds ofsurgeons that may do one, two
cases, three cases.
Speaker 1 (33:53):
Yeah, how do you excise thoracic endometriosis?
I mean, we're talking aboutexcision.
I know that scares a lot ofpeople to maybe even think about
.
You're going to cut what out ofme and what organ.
How do you do things like thisand I know that this is
complicated to explain, maybe ifyou don't have a medical degree
but is there a way that youexplain this to your patients as
(34:15):
how you're going to approachexcision?
Speaker 2 (34:17):
Yeah, so the approach is either thoracoscopic or
robotic, which is variousmodality of minimally invasive
surgery, and there are allinvestigations that are
so-called keyhole, which youinsert a camera, and then you
have arms that you know,instruments that you use inside
(34:38):
the chest and we addressfirst-tier mapping, which is a
high definition 4K or 6K camera.
I look at every corner of thechest, we take pictures all over
and then these pictures staywith the patient and with us to
have a database of images tokeep for record.
(34:59):
And then we identify all theareas of suspected thoracic endo
.
When it comes to the pleura, weexcise them, them and we go
down to the thoracic fascia.
The pleura is the lining of thechest cavity.
When it's the surface of thelung, often we use automatic
staplers, which are the same weuse for lung resection.
(35:20):
Fortunately, endometriosis isoften superficial, so the loss
of lung tissue for the patientis minimal and the breathing
capacity is virtually the sameafter resection of thoracic endo
.
The most impactful operation byfar is diaphragmatic resection
because at least when I see deepfilters to the diaphragmatic
(35:42):
endometriosis, I excise it, I gofull thicks and not the
diaphragm.
And this is a sore procedurebecause the more your surgeon
makes an effort to preserve thebranches and fibers of the
phrenic nerve, the more you'regoing to feel the operation
after.
So if you just go and make abig cut with a lot of energy and
(36:09):
then you cut all the branchesof the phrenic nerve, normally
you feel less pain but also lessfunctional phrenic nerve in the
end.
If you instead do like a tissuesparing procedure in which you
just take exactly the area whichis affected and try to spare as
much as possible, you docomplex reconstructions.
You know it's better in thelong run, initially actually the
patient the area which isdefective and try to spare as
much as possible.
(36:29):
You do complex reconstructions.
You know it's better in thelong run.
Initially actually the patientfeels the operation more because
you spare the fronting nervebranches more.
Speaker 1 (36:35):
I mean nerve sparing is so important anywhere in the
body.
There's a reason we have ournerves right.
Speaker 2 (36:42):
Yeah, but unfortunately the structure on
the diaphragm is something wetry to do.
We try also to put like localanesthesia directly on the
frenteal nerve, which seems togive like a little bit of 48, 72
hours, but unfortunately it's alittle bit of a slower
procedure.
It's important that Icommunicate this to the patients
when they are prepared yeah,prepared and amazingly I had
(37:06):
patients that came out ofsurgery and day one they told me
it's achy and I can feel it.
But they said I can feel it'snot classic, I can feel it's not
end of pain.
I can tell this is acute pain,it's like something bites in on
that, but I can feel that it'sgoing to go.
It's nothing to do with thatheat-throbbing, dull ache that
(37:32):
they felt with thoracicendometriosis, which is amazing
because obviously I knowthoracic endometriosis a sore
operation is painful and theyimmediately detect that the pain
has changed.
Speaker 1 (37:45):
I mean, I think that's similar.
You know, I have only hadsurgery in my pelvis really, but
it's a similar thing where youwake up and you're like I'm in
pain.
But it's not the same pain.
I feel so much better, in factthe energy was back more.
And you know, it's just very,very different between healing
pain and your body telling yousomething's wrong pain.
(38:08):
You know, I think that there'sthat somatic pain and which is I
think so interesting.
Speaker 2 (38:13):
It's amazing if you think that in a few years we
went from many doctors evendenying the very existence of
thoracic and diaphragmaticendometriosis, and now we're
discussing a patient realizingwhen they wake up from surgery
that the traumatic pain is gone,the endo pain is gone and now
the feeling that the healingpain and surgical pain is an
(38:35):
amazing transformation in just afew years.
Speaker 1 (38:38):
What is a typical healing time for surgeries like
this, because that is anotherthing people are a little leery
of.
Speaker 2 (38:45):
Yeah, so patients, normally they'll be walking a
few hours after surgery.
So I don't want to scare peopleoff too much about the impact.
So it is manageable and they'llbe walking hours after the
operation.
Normally the lines they have isone chest strain or not.
Always they're going to have achest strain, it depends on the
entity of what they had.
I am trying to minimize theuser chest strain.
(39:07):
Sometimes they don't have anylines.
They're going to have theincisions on the chest.
And there's another thing that,working towards minimizing,
we're trying to do single axissurgery.
So either going on the chestand then through the diaphragm
to look in the abdomen or fromthe abdomen through the
diaphragm to look in the chest.
Try to avoid having dual axisbecause when you operate on
(39:34):
somebody through the abdomenthey breathe with their muscles
in the chest the chest muscles.
When you operate them throughthe chest you use their
abdominal muscle to breathe.
It's intuitive that if you gothrough both cavities it is
difficult to breathe aftersurgery.
So that's the idea.
You know, in recovery you stayin hospital two, three nights
(40:00):
and then they will go home.
We normally say stay off, worka couple of weeks, Okay, and you
know, keep taking painkillersand doing physio.
Speaker 1 (40:10):
The quality of life.
There are restrictions afterendometriosis surgery like this
that maybe they shouldn't goback to.
Speaker 2 (40:19):
Expectation.
Actually they will be doingbetter.
They should have lessrestriction to the quality of
life.
That's the whole purpose of theoperation.
So if, for example, they hadprobably pneumothorax, repeat
the collapsed lung, they mightbe able to finally travel and
take a plane, because they werevery scared to do so because of
(40:39):
their previous collapsed lung,or even travel to somewhere
exotic.
They were scared to do thatbecause of the you know, were
afraid to have a pneumothorax insomewhere that you cannot have,
you know, appropriate care andalso when it comes to cyclic and
diaphragmatic pain.
That should also improve theirquality of life.
Speaker 1 (40:59):
Yeah, this is all really good.
Okay, here's where it getsreally good.
What are you excited for inthoracic endometriosis in
surgery?
What do you see changing?
Speaker 2 (41:12):
I am excited One aspect about international
collaborations to make sure thatsome centers have a high volume
of thoracic endometriosis.
That, I believe, is the way youincrease knowledge in surgery.
Initially, it's very importantto have a few centers have high
volumes.
They can create a pathway andstart the operative procedures
(41:36):
and then they can disseminateout that.
The second aspect I am excitedis education, and I've been
working with European society.
I'm director of the Europeanexam and the Jurassic course and
this year we'll have, for thefirst time, jurassic and the
Machios be part of thecurriculum.
(41:57):
And also I believe that I'mvery excited about this era of
the appropriate and good use ofsocial media, because I think
social media are really the gamechanger because they can reach
anyone Like I don't know.
Tomorrow, anyone a politicianin Polynesia will come see this
(42:18):
interview and they will learnsomething they didn't know, and
I think this is incrediblypowerful too.
And social media, if usedcorrectly, are a force for good.
Speaker 1 (42:32):
Yeah, it can be a great tool.
You have to be mindful of whoyou're listening to.
Obviously that's for anything,right, but it can be such a
great tool and a great way ofgetting really good education
out there and ways to navigateour care better.
(42:53):
What would you tell the patientthat suspects they potentially
have thoracic diaphragmaticdisease?
What would you tell them ifthey are struggling finding the
proper care?
Speaker 2 (43:03):
I would probably advise to seek out a high volume
center in endometriosis and askthem if they have contact with
the thoracic surgeon that alsocan see them, because often the
answer is yes, we have athoracic surgeon that works with
(43:26):
us.
Don't worry, when we need them,we call it or we call her.
That's not the answer that Iwould be satisfied with.
I would like to meet with theperson and have an encounter
with the person and see what theanswer is going to be, what
experience, what their ideas andand the surgical plans as well.
Speaker 1 (43:46):
Yeah, it's key to know your team and if they can
follow you in everything you doand continue working with you,
because this is you know, a lotof times we talk about this
disease as it being, you know, awhole body.
It's a whole life disease too.
You have to be aware ofeverything that kind of
coincides with this disease,which are there other diseases
(44:08):
that tend to like to partnerwith cardiothoracic
endometriosis?
Are there things that you seein correlation?
Speaker 2 (44:16):
Well, thoracic endometriosis in general is an
association with many otherconditions LN dollars,
connective tissue orfibromyalgia.
Although, when it comes to thischronic pain condition, I often
wonder if it's a chicken andegg situation which, when you
have chronic pain in the chestand the abdomen, it's easy to
(44:37):
diagnose also a pain in themuscles or the joints, because
the body is all connected and,for example, having adhesions in
the abdomen can lead to the bigmuscle at the bottom of our
lumbar spine which is the aliostoas muscles, and this can
create a whole lot of back painand shoulder pain and other
(44:59):
issues.
So, you know, also sadly, isdepression because and anxiety,
because chronic pain has a hugeimpact on our mental health.
So, yeah, it's connected withvarious aspects and also the
anxiety of having a repeatedneural thorax and being
dismissed, having chest pain orshoulder pain.
(45:19):
I think that medical dismissaland gaslighting is a disease in
itself, because you're in pain,you're in trouble and you seek
out the expert's opinion and theexpert's opinion is oh, it's
all in your head.
I often admire the patient thatwent on for years because I'm
(45:40):
not sure if I would do the same.
I, you know, maybe seek onespecialist and another one and
they tell me no, look, don'tworry, it's all fine, it's all
in your head.
Just take this pill.
It will help you sleep and beless anxious and go ahead with
your life.
I probably would listen.
Speaker 1 (45:58):
And that goes to the fact that we are loyal a lot of
times to our medical providers,whether they're serving us well
or not.
Sometimes and that's what'sreally hard for patients
specifically is that we thegaslighting.
It becomes a mental struggleand then it kind of exacerbates
the depression anxiety even more, and that's what's so
(46:18):
challenging, and especially whenyou have complex disease that
isn't widely recognized.
I'm sure in this case you knowa lot of your patients have
experienced that where they'reconstantly seeking care for
something and being told thatit's nothing, it's just anxiety,
it's just depression, which itturns into.
That you know.
(46:39):
So I think your job is evenmore challenging than probably
some other areas of medical carebecause you're seeing patients
who have been doing this foryears.
You're not only a doctor, asurgeon, but you in some ways
are the one that's helping theirmental health because you
(46:59):
believe them, you know, andfinding them a better care team
that will believe them and notjust settle for it's in your
head or you just have anxiety.
So I have to imagine that takesa toll on you sometimes too is
to see your patients walkthrough that.
Speaker 2 (47:15):
It is.
It is.
You know, oftentimes they aredifficult.
I mean, I would say everyone isvery nice.
It's just that it took a tollon my trust and faith in my own
medical profession listening toall these stories.
But at the same time I don'tfeel I want to chastise my
colleagues, because they weretrained to do diagnosis and they
(47:39):
were also trained not tobelieve every symptom because
they felt especially the oldergeneration of doctors that they
were the one that will filterthrough the noise and then find
the diagnosis.
I feel that older generationdoctors they were not everyone,
(48:03):
of course, but they were moreabout saving lives, the
mortality of things.
Now medicine is more aboutquality of life, in which it's
not all important.
You recognize an importantsymptom but if it is a great
deal for the patient, if thepatient feels it as they're
perceiving that, then it's thebig deal.
It's important, regardless ofthe fact that maybe not relevant
(48:26):
for what you were trained as adoctor.
I think there's a shift in themedical profession understanding
what's relevant.
Speaker 1 (48:35):
Yeah, I think there's also a shift too.
I mean, I think there'sprobably.
This could go either way, but Ithink a lot of providers are
coming to terms with the factthat the patients are becoming
more savvy, and so theythemselves are becoming more
curious, and maybe not even morecurious, but they're like, well
, they're saying this over andover again.
I got to figure out why, youknow so.
(48:56):
I think that it is shifting alittle bit.
Speaker 2 (49:00):
Yeah.
So when you mentioned beforegoing back to your previous
question what would you want foryour doctor, you know, thoracic
surgeon or gynecologist?
I think for me, one of the mostimportant green flags when you
go and see a specialist is aspecialist that doesn't mind to
be challenged and doesn't getannoyed when you mention Dr
Google.
Speaker 1 (49:20):
Yes.
Speaker 2 (49:20):
Because I actually like it, because it keeps me
always informed.
It happens very rarely that thepatient comes up with something
that I didn't hear before, butnonetheless I still enjoy it
because I like when the patientsare knowledgeable and they come
up with their own ideas.
And if the specialist offersjust listens for the first bit
(49:45):
of the consultation, normallyyou establish their reports of
trust and people relax and opensup.
If especially startsimmediately being defensive and
seems annoyed, I think is a signof a bit of your shaky
knowledge and not so confidencein that level of depth of
(50:06):
knowledge, right.
So I would advise the patient.
You know he has a green flag,he's a doctor, doesn't mind to
be challenged.
Speaker 1 (50:13):
Yeah, I agree, because we're all complex humans
.
We all deserve that bit ofcuriosity in our care right,
having a provider go alongsideyou with that means a lot to us
as patients, but also it canchange the face of medical care
across the board, which is whyI'm excited that you are doing
what you're doing, because thatcuriosity, that drive to
(50:36):
continue seeking better care forthe patients and understanding
the disease, understanding thepatients with the disease and
all the nuances that come withit, are imperative for the
future of endometriosis.
So thank you for continuing tobe curious, thank you for taking
the time to sit down andexplain this to people so that
(50:57):
they have better knowledge andhave a better understanding of
potential risks of extra pelvicendometriosis.
And so thank you so much fortaking the time.
I know it's precious.
Speaker 2 (51:09):
Pleasure.
Thanks so much.
Speaker 1 (51:12):
Absolutely.
Thank you Until next time.
Everyone continue advocatingfor you and for others.
Popular Podcasts
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Crime Junkie
Does hearing about a true crime case always leave you scouring the internet for the truth behind the story? Dive into your next mystery with Crime Junkie. Every Monday, join your host Ashley Flowers as she unravels all the details of infamous and underreported true crime cases with her best friend Brit Prawat. From cold cases to missing persons and heroes in our community who seek justice, Crime Junkie is your destination for theories and stories you won’t hear anywhere else. Whether you're a seasoned true crime enthusiast or new to the genre, you'll find yourself on the edge of your seat awaiting a new episode every Monday. If you can never get enough true crime... Congratulations, you’ve found your people. Follow to join a community of Crime Junkies! Crime Junkie is presented by audiochuck Media Company.
Ridiculous History
History is beautiful, brutal and, often, ridiculous. Join Ben Bowlin and Noel Brown as they dive into some of the weirdest stories from across the span of human civilization in Ridiculous History, a podcast by iHeartRadio.