Endometriosis Above the Belt: A Life-Changing Conversation With Dr. Francesco Di Chiara

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.

Transcript

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Introduction to Thoracic Endometriosis

Speaker 1 0:00

Do you sometimes have a hard time breathing , especially during your cycle , or do you have that right shoulder pain that just won't go away ? Maybe your lung collapses during your cycle and no one seems to think it's that big of a deal , or they just can't figure it out . Well , stick around , because Dr Francesco Di Chiara is here to explain what you could potentially have . Have you ever heard of cardiothoracic endometriosis , or extra pelvic endometriosis or extra pelvic endometriosis ? Or maybe you've heard about diaphragmatic endometriosis ? He's here to address these , the symptoms and how he can address them . Stick around .

Speaker 1 0:37

Welcome to EndoBattery , where I share my journey with endometriosis and chronic illness , while learning and growing along the way . This podcast is not a substitute for medical advice , but a supportive space to provide community and valuable information so you never have to face this journey alone . We embrace a range of perspectives that may not always align with our own , believing that open dialogue helps us grow and gain new tools . Join me as I share stories of strength , resilience and hope , from personal experiences to expert insights . I'm your host , alana , and this is Endobattery charging our lives when endometriosis drains us . Welcome back to Endobattery . Grab your cup of coffee or your cup of tea and join me at the table Today .

Speaker 1 1:22

I am joined at the table by my guest , dr Francesco Di Chiara , a leading consultant thoracic surgeon at the John Radcliffe Hospital in Oxford and a true pioneer in minimally invasive chest surgery . Renowned internationally for developing and refining cutting edge techniques , including groundbreaking single incision procedure for thoracic outlet syndrome , dr Di Chiara is transforming the way we approach complex thoracic conditions . With deep expertise in lung cancer , chest wall trauma and disorders like thoracic endometriosis , he's not only a gifted surgeon , but also a passionate educator and an innovator . I am thrilled to be diving into this conversation with someone who is shaping the future for thoracic endometriosis . Please help me in welcoming Dr Francesco Di Chiara . Thank you so much , dr Di Chiara . I'm so thrilled that you sat down with me today . We met at the summit and it was one of those moments where I was just enthralled by everything that you were talking about , so I'm honored that you sat down with me at the table today .

Speaker 2 2:26

Well , thanks for your invite . It's very kind and I'm eager to hear the questions you gathered , and thanks so much for inviting me .

Speaker 1 2:37

Of course , it's just an honor for me . For anyone that is unfamiliar , what does cardiothoracic surgeon typically entail , or what is cardiothoracic in general , and how does it relate to endometriosis ?

Speaker 2 2:53

So cardiothoracic is a medical term for heart and lungs or heart and chest . So it usually according to when a person is studying and specializing . For example , in North America it's normally a general surgery that develops a skill in cardiac and thoracic surgery . We'll see in other parts of the world , for example Northern Europe , that it will be cardiothoracic a standalone specialty . But it deals with the diseases of the heart , revascularization or disease of the chest , most commonly lung cancer and other malignancies of the chest .

Speaker 1 3:39

How does that relate to endometriosis ? Because not a lot of people are very familiar with that , Even in the medical industry they kind of are unfamiliar with the fact that endometriosis can happen in the heart , in the lungs , in the diaphragm .

Speaker 2 3:56

So yeah , that's a very good question . The reality is that endometriosis is a systemic disease , can go anywhere in the body . It's been found in every organ , including the brain , the eye , and the most common extra-thoracic , extra-pelvic location is the diaphragm . So the thoracic surgeon historically has been involved by gynecologists that advocated for excision , but many times it was an ad hoc involvement and often also involved during the operation . So that does make it quite difficult for the surgeons and for the patients to be involved during the operation because there was a surprise at diaphragmatic disease .

Speaker 1 4:41

How did ? Was it a patient ? Was it something that you were seeing commonly ? Because I'm sure that wasn't something that you thought of when you first went to medical school . I'm going to do endometriosis surgery , you know , on the heart .

Speaker 2 4:53

Conversely to the idea that it happened like this . So I was preparing my final board exam and we were studying , actually , an American book called Shields it's got these two big volumes on this and it was this huge chapter about plural diseases , plural conditions , and then benign and malignant . And then there was a big chapter on the forex and then in this chapter it was analyzing every little aspect of minute detail there was this little paragraph literally like this , saying that individual female during menstruation may experience hemothorax . Full stop , no reference , no further explanation . And I thought to myself this is amazing . How can I link a hormonal change to a collapsed lung ? It seems so interesting . How can I link , like , a hormonal change to collapsed lung ? It seems so interesting . And the more I was trying to find information and interest , the least I found . And actually I found some resistance from my colleagues onto the idea of going across your specialty . Often karyothoracic is a bit of a conservative speciality and collaboration is not always that easy .

Speaker 1 6:10

Yeah , so when you talk pneumothorax , can you explain that a little bit ? And that's why that kind of led you into thinking more about the cardiothoracic endometriosis .

Speaker 2 6:21

Yes , so a pneumothorax is a collapsed lung and is a common presentation of thoracic endometriosis . The collapsed lung can be partial or complete , and one of the main myth busters that I often explain is that the typical thoracic endometriosis patients are between 15 and 50 years old , will not be extremely breathless as often like Google might suggest when you're looking for the symptoms , because they say our pneumothorax is intense breathlessness . It's not true . The patients can have a significant pneumothorax and continue to go . Especially the endometriosis patients is a subgroup of individuals that have been coping with pain and discomfort since age 12 , 11 , when they have the first menses , so they're actually very resilient to pain and discomfort in the chest .

Speaker 2 7:21

The other common symptom is pain in the shoulder , which is another very big branch of elements that is often confused . I would say that I don't have the full statistic , but I would say that probably 90% of my patients have seen either a chiropractor or an orthopedic surgeon before seeing me , because of pain in the shoulder is considered , you know , to go see somebody fall on the shoulder . The pain in the shoulder is actually related to the phrenic nerve , which is the nerve that controls the diaphragm . The hemidiaphragm has these two big muscles that control the breathing at the bottom of our chest , and so when you have an irritation or some trouble of the phrenic nerve , the pain is actually perceived up here and in the neck . So these are the two main symptoms , and there's a lot of other things that can happen . I would say collapsed lung and pain , shoulder pain and probably the commonest .

Speaker 1 8:21

Are there more symptoms that kind of relate to that ? Maybe that get misinterpreted as other conditions that people would not even consider as endometriosis ?

Speaker 2 8:33

The related thoracic endometriosis . Yes , there is hemoptysis , which is coughing up blood , which is one of the rarest and most difficult to diagnose , and when it comes to thoracic endo , rarity often for me means that it's not that rare , it's just trickier to diagnose .

Speaker 1 8:51

Right .

Speaker 2 8:51

Because when it comes to hemoptysis you can be confused with disease , with reflux , with anything Right , and so the patient should keep a diary . And the hemoptysis does not present

Understanding Cardiothoracic Surgery

Speaker 2 9:04

with every menstruation , so it's just trickier to diagnose . And then there is also a presentation with hemothorax , which is blood in the chest , and again , extremely rarely this is a dramatic hemothorax . Until they get to the OR or to the ITU , it is a modest hemothorax , causing a lot of irritation , a lot of discomfort and some effusions which is fluid filling up that space at the bottom of the chest . These are quite tricky to diagnose and there are lots of investigations and they're often dismissed because they're self-limiting .

Speaker 2 9:48

So the concept of self-limiting symptom is probably the biggest barrier in diagnosing patients with thoracic endometriosis . Doctors are trained since their infancy of their training that any symptoms or any sign that is self-limited that basically resolves itself , or any sign that is self-limited that basically resolves itself is not something that we need to worry about . So let's say that a patient comes to see you and he has a little bit of a fusion , a bit of fluid in the chest , and then you say , well , a bit concerning fluid in the chest can be even a sign of malignancy . Let's repeat it an extra week and then a week later the infusion is gone and the family doctor will feel rightfully in his own mind to reassure the patient and say , okay , it was nothing , because if the infusion had gone by itself then it was nothing , nothing to worry about anyway , 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 kind of 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 thoracic endometriosis .

Speaker 2 11:00

The most knowledgeable and prepared patient I've ever seen comes with a folder called the chapters of their history , and they know everything about it . And if you go through their history , they've been fighting for 10 years and they had their family's support , their financial means , see many doctors and they didn't give up on frustration . So that actually I don't find it reassuring . I find it very concerning because that gives me the idea of the thousands and thousands of patients they gave up , maybe year two , year , five , year , seven or something else happened in their life , another health problem or something else , and I'm seeing only the one that managed to go through 10 , 15 years of various attempts . And then obviously they go through phases in which they feel convinced that they probably it's all in my head and then so it's not in my head , and then you know I can't be , and then they start fighting again to find someone . But it's a very long journey and 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 process because this disease is so expensive , don't have the means . Don't have the means to continue that trajectory . So that makes it even a little bit more challenging , I would assume , for a lot of those patients .

Speaker 2 12:27

Yeah , yeah . And sometimes it's even more heartbreaking because they might have the means finally to find a specialist that knows about drastic endo and have the suspicion , but then to get an operation might be too expensive and 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 that we have now is the same , is MRI with specific endometriosis protocol and with T1 fat saturated and so on . So there are two main barriers for diagnosis . One is the training of radiologists , which I often discuss with because I think they want to find the reassuring finding of the round endometrioma , which is a solid , definite lesion of the round endometrial .

Speaker 2 13:23

One , which is a solid , definite lesion , is almost never there in the chest and they're often very thin and widespread lesions , the nooks and crannies of the chest . And the second main barrier is that the lesions are thin and below the resolution of the MRI . And I can add a third barrier to the diagnosis the most common area where the endometriosis in the chest is present is the diaphragm , which is the area where there are more movement artifacts , because MRI is not a breath-hold investigation . So during an MRI we don't hold our breath for 30 minutes , obviously , so we keep breathing and the acquisition , although filtered through algorithms and computer system , is still a bit artifact , movement artifacts . So what you should have the highest resolution is actually where you get the least resolution .

Speaker 1 14:18

Interesting . How deep can these lesions go , though ? I mean we're talking some superficial , but how deep can they go ? Can , though I mean we're talking some superficial , but how deep can they go ? Can they go into the lung ? Can they go even deeper than that ?

Speaker 2 14:31

So they can definitely go through the diaphragm and I'm trying to work together to build a classification in deep infiltrative and diaphragmatic disease and non-deep infiltrative diaphragmatic disease , because they tend to present with different colors according to if they are infiltrative or not , and also the yastric and going the lung . I've seen anecdotal cases of lung endometriosis . I was at least lucky enough , when I often don't see any cases that are severe , but certainly I've seen in the prura , so the lining of the lung , and I've seen a lot of deep infiltrative endometriosis in the diaphragm and I have at least about five ,

Symptoms and Diagnosis Challenges

Speaker 2 15:22

six cases of very suspicious airway endometriosis . But it's very difficult to catch because it's although I've done bronchoscopy , a camera test of the airway it's normally located very peripherally where the airway is so thin that you can't fit the bronchoscope in even using a thin one .

Speaker 1 15:42

Interesting , do you ? Okay side note on that ? Maybe this is curiosity from my standpoint when you're talking about that For those people who they . For myself in particular , I've been diagnosed with vocal cord dysfunction and it's interesting to me that maybe that's not always vocal cord dysfunction , maybe it's something more . Would you have that right shoulder pain along with that as well , like that trouble breathing ? It's getting harder type of thing , or can that ? Happen simultaneously on its own .

Speaker 2 16:16

I think that an individual who has a diagnosis of endometriosis should have a very high level of suspicion for symptoms that have this kind of pattern , in which they tend to come with the ovulation period and then they fade and the patient gets better without any treatment .

Speaker 2 16:34

Whatever is the symptom migraine , blurred vision , change in the voice , coughing up blood , change in the performance , pain in the shoulder , pain in the diaphragm , pain in the chest , all these symptoms if they come and go with the period , they might be related to extra pelvic endo . I think we're only scratching the surface in these years of what is the true diagnosis . I have patients a couple of them with this migraine and since we know that a catamenial epilepsy exists , I wonder also if it's maybe another form of presentation of extra pelvic endometriosis . I cannot prove it because , again , mris didn't help . But it's very interesting also because we know that the patient , when they are young , the symptoms tend to have this pattern and when they get older they are chronic because the pain can escape , you know , can become chronic pain . You know the pattern of chronic pain when it's prolonged and then it's always there . But at least initially they can refer a very good history of having a pattern of these symptoms and for five years it was coming and going , and then with full resolution .

Speaker 1 17:54

Yeah , it's interesting . You said earlier the color spectrum . You have this brilliant way the color 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 lot of 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 in presentational disease . On the lesion they're pink and sessile . That seems to be the most superficial . I get that with a brown cauliflower shaped ones that are very superficial and when I go at the base the diaphragm underneath looks , or the pleura looks , completely fine . Instead there are the purple which are hemocytinine-filled Hemocytinine is like a fancy name for old blood and white , which we all know why it's scarred . Scar is always the end stage of a very prolonged inflammatory process in our body . So the idea that I haven't proven yet is that this is a pathway or steps to get to the final scarring . Although there are elements supporting my theory and elements not supporting it , I am still thinking that it shows a lot of elements supporting this and at least it gives some way to approach the disease systematically , systemically , in a way that we know what to do .

Speaker 1 19:30

Right . I mean , it's similar to the pelvis , right ? There's different variations of the disease as far as coloration is concerned , and so I think a lot of times that's what's missed , even in the pelvic region . A lot of times is that what we're taught is the powder burn lesions , that's the endometriosis , but it comes in so many different , various forms , and if you don't know what you're looking for , it's often going to be missed even by some specialists , because it varies for everyone . So I think it's interesting that 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 an interesting thing for us to know as patients is that if someone says , no , you don't have this , it's worth investigating more because they may not be able to identify it . Which to my next point is is it important for someone that is an excision specialist to have a cardiothoracic surgeon be able to do these surgeries ?

Speaker 2 20:35

Yeah , I think one of the big discussion I had with you know , andrea Vidali , which I started collaborating also with Martin Hirsch , is that the role of thoracic surgeon should come much earlier and not , as it was historically , that often or sometimes was called directly in the OR when something was found on the diaphragm . I think the role of thoracic surgeon has a huge impact on the quality of life for the patient and the patient has the right to speak early with the thoracic surgeon to make plans ahead to you know , potential example impact on quality of life sacrificing the phrenic nerve , plans for fertility because diaphragmatic surgery can impact pregnancy . There are elements that need to be discussed and the patient should have a consent to all these aspects . So I think that the role of thoracic surgeon should change and you know multidisciplinary meeting in which you at least see the gynecologist and thoracic surgeon or , if you need bowel resection , the gynecologist and the colorectal surgeon . So I think only meeting the lead gynecologist is not the way to go about this disease in the future .

Speaker 1 21:51

I agree . I think everyone has a place in that room to give the patient the best quality care that they can and the best outcome . Are there risks associated with like 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 the inside of the chest becomes scarred and oftentimes the lung sort of tries to heal on its own . But it's the same idea of a fracture left untreated the bone doesn't really heal that nicely , isn't it ? It heals all in a funny position . It's the same thing when a pneumothorax tries to heal on its own inside the chest , somewhat the lung comes up , but the scarring is in the wrong position and the lung is

Imaging Limitations and Disease Patterns

Speaker 2 22:48

in an awful partially expanded way , which then opens the gates to a lot of complications .

Speaker 2 22:57

A fusion which is fluid , the fluid can get infected , becomes an empyema , or repeated pneumothoraces can break the adhesion and cause pneumothorax , which is blood . So there are risks , especially in the repeated pneumothoraces . When it comes to that paracetamol , it only causes pain . I don't think you can underestimate it , say , oh , it's only pain , because it's probably the thing that affects the quality of life the most . So eating pain , I don't think it's something we should overlook . It is for me a very important indication .

Speaker 1 23:35

Yeah , and I think what's interesting too and you had talked about this before is pregnancy in that as well . Can you explain that a little bit and why this is so important for those who maybe ?

Speaker 2 23:49

are struggling with fertility .

Speaker 2 23:51

Yes . Well , when it comes to thoracic endometriosis and diaphragmatic endometriosis , so operating on the diaphragm , we have some data of operating on the diaphragm and then pregnancy , but these are not specific of thoracic endometriosis . These are for another type of diaphragmatic surgery . So , when it comes to this surgery major diaphragmatic surgery some recommend including me to have elective C-sections because the risk of delivering the child in a natural way can put a lot of strain on the diaphragm . Now , by general terms , surgery to the diaphragm is meant to be solid in physiological condition .

Speaker 2 24:38

Pregnancy is a situation in which the diaphragm is under extreme strain and this can disrupt reconstruction . And also , additionally , when there are those major diaphragmatic surgeries in which the phrenic nerve may be sacrificed , then the phrenic nerve is not working and the diaphragm rises , which is something that can be managed when the patient is not pregnant . When the patient is pregnant , the intra-abdominal pressure rises significantly and the diaphragm , which has a non-functioning phrenic nerve , can have a lot of trouble and they need to see a specialist . They need to be followed up closely during the pregnancy . I don't think I don't want to scare people off about being pregnant , but they should have a specialist following them up during the pregnancy . I don't think . I don't want to scare people off about being pregnant , but they should have a specialist following them up during the pregnancy Because , if this is not happening , at least there is a plan to deliver the baby and then operate on the mom , rather than be all a surprise and maybe her being very unwell , very breathless and in trouble all of a sudden as a surprise .

Speaker 1 25:46

Which goes back to the point earlier of having someone on your team that specializes in this . Yeah , because those are the people 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 the implications and ramifications that I have in my mind and that may be obvious to me . It may be very tricky to a gynecologist .

Speaker 1 26:17

Right , we talk about the risks with pregnancy , but what are the risks for surgery when it's not pregnancy ? Are there risks associated , of course , with every surgery ? There is , but what are some of the risks ? Maybe ?

Speaker 2 26:31

Yes . Well , when we are operating inside the chest , we have the most vital structures in the body except the brain . So you have the heart , the aorta , the superior vena cava all the largest blood vessels in the body . So clearly , we are in a delicate area in which expertise and surgical skills and steady hands are very important . When it comes to pleural surgery , it is normally the lowest risk type of surgery when it comes to thoracic endo , and that there is lung surgery , which is something that thoracic surgeons perform routinely . So , in my mind , one aspect that has to be looked at closely and the surgeon needs to have specific training and expertise is diaphragmatic surgery , because it's not part of every thoracic surgeon experience and some surgeons might not ever do diaphragmatic surgery because it's not part of every thoracic surgeon experience and some surgeons might not ever do diaphragmatic surgery in their career .

Speaker 2 27:31

When it came to me , I already had the interest in diaphragmatic surgery and then also added on into thoracic endo . So diaphragmatic surgery is a skill in itself because it's basically between the abdomen and the chest , and so there are a lot of implications with that . So you know , the anatomy below the right hemidiaphragm is very different to the anatomy that is below the left hemidiaphragm , and also the appearance of the two hemidiaphragm is very different , because on one side you have the heart , on the left , on the other you have inferior vena cava and the connection that the liver has with the underbelly of the hemidiaphragm . So there are a lot of anatomical implications to consider .

Speaker 1 28:12

Right , it's so complex . This is why we talk about you know that specialty aspect . You have your knowledge of the heart , but your pelvis knowledge is probably not as good as maybe Vidali or someone like that . You know you guys are all so good , but that you're so much better together when you work together 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 skilled and experienced surgeon and you show them any surgical technique , any surgical procedure , like 10 times , let's make like an experiment . Now let's say that Vidal showed me 10 easy hysterectomies . With my 20-year surgical training I could probably replicate , but will I be able to know exactly what I'm doing ? In the same way , I could take him through an easy lobectomy . But you know , it's not just the acts of doing things , it's the deep understanding of the anatomical nuances , the implications , the slight difference that in doing something or not doing it has an outcome . Because in modern surgery thankfully for the patients we are not looking at differences . There are large differences in 5% , 10% . A good surgeon or a bad surgeon now is quantified in 2% or 0.5% better outcomes .

Speaker 1 29:41

Are there ways that people you know similar to the pelvis ? A lot of people want to find ways that they can help manage some of the pain without surgery . Is that poethorastic endometriosis or is that something that really you need to address because of quality of life ?

Speaker 2 29:56

So excision versus medical treatment is a very well debated topic very well debated topic and you know , if you look at the ASHRAE guidelines that are in Europe are advocating lots of steps of medical treatments before attending excision , and will other practitioners and gynecologists offer excision almost as mainstream treatment and then consolidate with hormonal treatment . When it comes to trasequendo and generally the generalities of medical treatment for endometriosis , I prefer to leave it with the gynecologist . I still feel that that's more their patch . But when it comes to trasequome , something I've seen in clinic and it's my main advice to the patients is don't consider it as a long-term solution , because you know , I've seen patients that maybe they start having chest symptoms and they went on some hormonal treatment and when they were I don't know , 37 , 38 , they decided okay , now I'll stop hormonal treatment , I want to have children , and all of a sudden they started having lung collapses , horrific chest and diaphragmatic pain and they eventually come to me .

Speaker 2 31:17

It takes two , three years to see a specialist find the right one and they look inside there's lots of endometriosis and the clock is ticking and they plan for fertility . 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 have endometriosis and chest symptom and maybe you have something short term , like you want to get your degree or getting married or something important a few years of hormonal treatment is probably a good idea to maybe achieve your

Surgical Approaches and Considerations

Speaker 2 31:51

goals and then , in the long run , maybe consider having a specialist referral , having a thoracic surgeon looking inside the chest with an idea of what's going on , because the hormones sometimes are very good at masking the symptoms but they don't cure the disease .

Speaker 1 32:06

Right Right , which is probably one of the biggest misconceptions that we often hear right yeah , it's a curative measure , and I think that's why it's really important for a lot of us to understand the fact that a hysterectomy is not going to cure your thoracic endometriosis , and I think that this is just further proof of that . It's knowing your team , knowing that they specialize in endometriosis specifically and have really good evidence-based education and knowledge to accompany their skill set , because you can have knowledge and not skill , but you can also have the skill and not the knowledge and not skill , but you can also have the skill and not the 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 comes from Right .

Speaker 2 32:54

Because there's pharmaceutical companies that are producing the evidence on various hormonal treatments . And when it comes to surgery and excision , it's a little bit harder to produce it because you have a few specialists that do a lot of surgery but then the rest is a high number , especially with a small number of procedures . So to collectively get all those numbers together and see the benefit of excision , it is a challenge that we need to face , the challenge we need to do this , but it is not an easy task because even in thoracic endo you have only a small handful of thoracic endo doing maybe higher volumes , and then you have surgeons that maybe do two cases in their career , but you have hundreds of hundreds of surgeons that may do one , two cases , three cases .

Speaker 1 33:53

Yeah , how do you excise thoracic endometriosis ? I mean , we're talking about excision . I know that scares a lot of people to maybe even think about . You're going to cut what out of me and what organ . How do you do things like this and I know that this is complicated to explain , maybe if you don't have a medical degree but is there a way that you explain this to your patients as how you're going to approach excision ?

Speaker 2 34:17

Yeah , so the approach is either thoracoscopic or robotic , which is various modality of minimally invasive surgery , and there are all investigations that are so-called keyhole , which you insert a camera , and then you have arms that you know , instruments that you use inside the chest and we address first-tier mapping , which is a high definition 4K or 6K camera . I look at every corner of the chest , we take pictures all over and then these pictures stay with the patient and with us to have a database of images to keep for record . And then we identify all the areas of suspected thoracic endo . When it comes to the pleura , we excise them , them and we go down to the thoracic fascia . The pleura is the lining of the chest cavity . When it's the surface of the lung , often we use automatic staplers , which are the same we use for lung resection . Fortunately , endometriosis is often superficial , so the loss of lung tissue for the patient is minimal and the breathing capacity is virtually the same after resection of thoracic endo .

Speaker 2 35:34

The most impactful operation by far is diaphragmatic resection because at least when I see deep filters to the diaphragmatic endometriosis , I excise it , I go full thicks and not the diaphragm . And this is a sore procedure because the more your surgeon makes an effort to preserve the branches and fibers of the phrenic nerve , the more you're going to feel the operation after . So if you just go and make a big cut with a lot of energy and then you cut all the branches of the phrenic nerve , normally you feel less pain but also less functional phrenic nerve in the end . If you instead do like a tissue sparing procedure in which you just take exactly the area which is affected and try to spare as much as possible , you do complex reconstructions . You know it's better in the long run , initially actually the patient the area which is defective and try to spare as much as possible . You do complex reconstructions . You know it's better in the long run . Initially actually the patient feels the operation more because you spare the fronting nerve branches more .

Speaker 1 36:35

I mean nerve sparing is so important anywhere in the body . There's a reason we have our nerves right .

Speaker 2 36:42

Yeah , but unfortunately the structure on the diaphragm is something we try to do . We try also to put like local anesthesia directly on the frenteal nerve , which seems to give like a little bit of 48 , 72 hours , but unfortunately it's a little bit of a slower procedure . It's important that I communicate this to the patients when they are prepared yeah , prepared and amazingly I had patients that came out of surgery and day one they told me it's achy and I can feel it . But they said I can feel it's not 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's going to go . It's nothing to do with that heat-throbbing , dull ache that they felt with thoracic endometriosis , which is amazing because obviously I know thoracic endometriosis a sore operation is painful and they immediately detect that the pain has changed .

Speaker 1 37:45

I mean , I think that's similar . You know , I have only had surgery in my pelvis really , but it's a similar thing where you wake up and you're like I'm in pain . But it's not the same pain . I feel so much better , in fact the energy was back more . And you know , it's just very , very different between healing pain and your body telling you something's wrong pain . You know , I think that there's that 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 even denying the very existence of thoracic and diaphragmatic endometriosis , and now we're discussing a patient realizing when they wake up from surgery that the traumatic pain is gone , the endo pain is gone and now the feeling that the healing pain and surgical pain is an amazing transformation

Treatment Options and Pregnancy Concerns

Speaker 2 38:36

in just a few years .

Speaker 1 38:38

What is a typical healing time for surgeries like this , because that is another thing 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 people off too much about the impact . So it is manageable and they'll be walking hours after the operation . Normally the lines they have is one chest strain or not . Always they're going to have a chest strain , it depends on the entity of what they had . I am trying to minimize the user chest strain . Sometimes they don't have any lines . They're going to have the incisions on the chest .

Speaker 2 39:14

And there's another thing that , working towards minimizing , we're trying to do single axis surgery . So either going on the chest and then through the diaphragm to look in the abdomen or from the abdomen through the diaphragm to look in the chest . Try to avoid having dual axis because when you operate on somebody through the abdomen they breathe with their muscles in the chest the chest muscles . When you operate them through the chest you use their abdominal muscle to breathe . It's intuitive that if you go through both cavities it is difficult to breathe after surgery . So that's the idea . You know , in recovery you stay in hospital two , three nights and then they will go home . We normally say stay off , work a couple of weeks , Okay , and you know , keep taking painkillers and doing physio .

Speaker 1 40:10

The quality of life . There are restrictions after endometriosis surgery like this that maybe they shouldn't go back to .

Speaker 2 40:19

Expectation . Actually they will be doing better . They should have less restriction to the quality of life . That's the whole purpose of the operation . So if , for example , they had probably pneumothorax , repeat the collapsed lung , they might be able to finally travel and take a plane , because they were very scared to do so because of their previous collapsed lung , or even travel to somewhere exotic . They were scared to do that because of the you know , were afraid to have a pneumothorax in somewhere that you cannot have , you know , appropriate care and also when it comes to cyclic and diaphragmatic pain . That should also improve their quality of life .

Speaker 1 40:59

Yeah , this is all really good . Okay , here's where it gets really good . What are you excited for in thoracic endometriosis in surgery ? What do you see changing ?

Speaker 2 41:12

I am excited One aspect about international collaborations to make sure that some centers have a high volume of thoracic endometriosis . That , I believe , is the way you increase knowledge in surgery . Initially , it's very important to have a few centers have high volumes . They can create a pathway and start the operative procedures and then they can disseminate out that . The second aspect I am excited is education , and I've been working with European society . I'm director of the European exam and the Jurassic course and this year we'll have , for the first time , jurassic and the Machios be part of the curriculum . And also I believe that I'm very excited about this era of the appropriate and good use of social media , because I think social media are really the game changer because they can reach anyone Like I don't know . Tomorrow , anyone a politician in Polynesia will come see this interview and they will learn something they didn't know , and I think this is incredibly powerful too . And social media , if used correctly , are a force for good .

Speaker 1 42:32

Yeah , it can be a great tool . You have to be mindful of who you're listening to . Obviously that's for anything , right , but it can be such a great tool and a great way of getting really good education out there and ways to navigate our care better . What would you tell the patient that suspects they potentially have thoracic diaphragmatic disease ? What would you tell them if they are struggling finding the proper care ?

Speaker 2 43:03

I would probably advise to seek out a high volume center in endometriosis and ask them if they have contact with the thoracic surgeon that also can see them , because often the answer is yes , we have a thoracic surgeon that works with us . Don't worry , when we need them , we call it or we call her . That's not the answer that I would be satisfied with . I would like to meet with the person and have an encounter with the person and see what the answer is going to be , what experience , what their ideas and and 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 do and continue working with you , because this is you know , a lot of times we talk about this disease as it being , you know , a whole body . It's a whole life disease too . You have to be aware of everything that kind of coincides with this disease , which are there other diseases that tend to like to partner with cardiothoracic endometriosis ? Are there things that you see in correlation ?

Speaker 2 44:16

Well , thoracic endometriosis in general is an association with many other conditions LN dollars , connective tissue or fibromyalgia . Although , when it comes to this chronic pain condition , I often wonder if it's a chicken and egg situation which , when you have chronic pain in the chest and the abdomen , it's easy to diagnose also a pain in the muscles or the joints , because the body is all connected and , for example , having adhesions in the abdomen can lead to the big muscle at the bottom of our lumbar spine which is the alio stoas muscles , and this can create a whole lot of back pain and shoulder pain and other issues . So , you know , also sadly , is depression because and anxiety , because chronic pain has a huge impact on our mental health . So , yeah , it's connected with various aspects and also the anxiety of having a repeated neural thorax and being dismissed , having chest pain or shoulder pain .

Speaker 2 45:19

I think that medical dismissal and gaslighting is a disease in itself , because you're in pain , you're in trouble and you seek out the expert's opinion and the expert's opinion is oh , it's all in your head . I often admire the patient that went on for years because I'm not sure if I would do the same . I , you know , maybe seek one specialist and another one and they tell me no , look , don't worry , it's all fine , it's all in your head . Just take this pill . It will help you sleep and be less 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 .

Speaker 1 46:04

Sometimes and that's what's really hard for patients specifically is that we the gaslighting . It becomes a mental struggle and then it kind of exacerbates the depression anxiety even more , and that's what's so challenging , and especially when you have complex disease that isn't widely recognized . I'm sure in this case you know a lot of your patients have experienced that where they're constantly seeking care for something and being told that it's nothing , it's just anxiety , it's just depression , which it turns into . That you know . So I think your job is even more challenging than probably some other areas of medical care because you're seeing patients who have been doing this for years . You're not only a doctor , a surgeon , but you in some ways are the one that's helping their mental health because you believe them , you know , and finding them a better care team that will believe them and not just settle for it's in your head or you just have anxiety .

Future Direction and Patient Advocacy

Speaker 1 47:09

So I have to imagine that takes a toll on you sometimes too is to see your patients walk through that .

Speaker 2 47:15

It is . It is . You know , oftentimes they are difficult . I mean , I would say everyone is very nice . It's just that it took a toll on my trust and faith in my own medical profession listening to all these stories . But at the same time I don't feel I want to chastise my colleagues , because they were trained to do diagnosis and they were also trained not to believe every symptom because they felt especially the older generation of doctors that they were the one that will filter through the noise and then find the diagnosis . I feel that older generation doctors they were not everyone , of course , but they were more about saving lives , the mortality of things . Now medicine is more about quality of life , in which it's not all important . You recognize an important symptom but if it is a great deal for the patient , if the patient feels it as they're perceiving that , then it's the big deal . It's important , regardless of the fact that maybe not relevant for what you were trained as a doctor . I think there's a shift in the medical profession understanding what's relevant .

Speaker 1 48:35

Yeah , I think there's also a shift too . I mean , I think there's probably . This could go either way , but I think a lot of providers are coming to terms with the fact that the patients are becoming more savvy , and so they themselves are becoming more curious , and maybe not even more curious , but they're like , well , they're saying this over and over again . I got to figure out why , you know so . I think that it is shifting a little bit .

Speaker 2 49:00

Yeah . So when you mentioned before going back to your previous question what would you want for your doctor , you know , thoracic surgeon or gynecologist ? I think for me , one of the most important green flags when you go and see a specialist is a specialist that doesn't mind to be challenged and doesn't get annoyed 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 the patient comes up with something that I didn't hear before , but nonetheless I still enjoy it because I like when the patients are knowledgeable and they come up with their own ideas . And if the specialist offers just listens for the first bit of the consultation , normally you establish their reports of trust and people relax and opens up . If especially starts immediately being defensive and seems annoyed , I think is a sign of a bit of your shaky knowledge and not so confidence in that level of depth of 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 of curiosity in our care right , having a provider go alongside you with that means a lot to us as patients , but also it can change the face of medical care across the board , which is why I'm excited that you are doing what you're doing , because that curiosity , that drive to continue seeking better care for the patients and understanding the disease , understanding the patients with the disease and all the nuances that come with it , are imperative for the future of endometriosis . So thank you for continuing to be curious , thank you for taking the time to sit down and explain this to people so that they have better knowledge and have a better understanding of potential risks of extra pelvic endometriosis . And so thank you so much for taking 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 advocating for you and for others .