Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
First of all, let me emphasize that there is ate uses as a concept, and truth of the matter is it's a condition and it's a disease. These are two different things. We think the condition is more than the disease. Obviously it's really not 10. What we know as 10% is really what surgically diagnosed or documented visible portion of the image. There's more endometriosis that women live with, never knew with their fertility problems or have many babies. They had normal, more than normal, uh, uh, you know, heavy periods or painful disease portion of their life. They live with it and they never, they were never diagnosed. So, condition and disease is different. What we know is the bulk of endometriosis is perial endometriosis. The one that really is not visible is only the patient complaints. Complaints. And the doctor is vigilant about it. And there's no blood test, there's no imaging.
That's, and that's the only patient that's really giving us the presumptive diagnosis of endometriosis. Their life is disturbed. That's why awareness and education is so important. It's the patient, it's the family, it's the school nurse, it's the husband, boyfriend, all of you, if you are the one making this disease visible. We doctors have limited voice from the disease aspect. So I'm sure I am referring many of your experience, many of this, many of you live with this disease many years and not diagnosed, have tons of tests, and you got angry and said, how could this happen to me? Where am I in my life? And why wasn't I not diagnosed? When you hear all of these things, I think, um, there we go. Okay. This is a multi-organ symptoms, multi-organ disease. And that's what it gets so confusing because the, the disease of, of the uterus, but the symptoms has not, has more than the uter, it's extra uterine symptoms.
So I will touch base on why this is so extra uterine. Before that, I, I changed my slides as Carly was presenting because I didn't want to show the same thing. So I thought it would be nice to go back in history. This is the, um, you know, this is a figure that dates back to 40,000 years ago, 35 to 40 from Vienna. And this is the fertility of God from Europe to all the way to Siberia. All those lands in stone age, probably women got respected more. They were the goddess of fertility. And you see ample hips, Lumin expressed uncovered nda. Uh, it's important to know that that 40,000 years until the biblical times woman was the fertility of God after that man to cover with, uh, you know, this is the ontology of blaming of the victims. I gave this talk in Harvard about 12 years ago, and I found these slides.
I was gonna present it, but then I gave up, but I thought it would be good, good to get to this, because many of you would find this interesting. It's the blaming the victim starts with the curse of the eve. As you know, Genesis three 16 and many of the, and other mis disease were sign of witchcraft, demonic possessions. You know, these women were subjected to range of punishment treatments, including executions, and exile. So, uh, it co it starts with that In Greece, Greek time, it was uterine suffocation. They would put these women upside down, so their uteruses hopefully will come down. They were, you know, it's very, very exciting history there. And, you know, witchcraft in middle age ages ni Romania, love sickness hysteria. I can go deeper into these, but I won't to. But the bottom line is, uh, overall it's an exciting history.
This is where, you know, basically Greek philosophers were more respectful, even though they were mimed as misogynist. In many ways, it is the biblical texture that really changed their whole look of the, of whom, how men really took over. You know, this, this, uh, this, uh, curse of Eve concept originally suggested that women were cursed by God to end your painful childbirth labor, but it was later distorted even further to include painful menstruation. So, um, it's nice to really know about these facts because if you don't know the history, you can't really respect what what really happens here. But many of the things, you know, were happening since Daniel women had and or related symptoms, uh, as long as they existed, we just didn't know. But this is interesting. So this is a 19th century painting depicting renowned French psychiatrist John Martin Charco with one of his patients, supposedly historical woman who has been put on trial for insanity.
A diagnosis of hysteria could have led to ruinous consequences at that time, such as ex-communication from family and community, and involved involuntary imprisonment in a mental institute. This is where hysterectomies were done in France in 19th century to, um, in Salir hospital renowned French Institute for Psychological Disorders, where woman was diagnosed with hysteria and commonly sent for hysterectomies. And this is gonna be my final slide on the subject. This is segment Freud's couch where patients were treated presenting with endometriosis like symptoms. They were treated and diagnosed for his hysteria. Was Freud proud? No. Probably at that time he did his best. So these, this is summary of the history. We, hopefully next year we are gonna cover Samson century. It's the Samsung that really 1920 from Johns Hopkins created this bird endometriosis, but the under microscope, the others already knew that 50 years ago, Culin from Johns Hopkins basically went to Vienna.
Learned that all these tricks from, from, um, Roski in my life, I was very affected by Victor Gomel, Harry Rich, and, and Cameron due to Cameron brought the video to this, to the whole diagnosis. Otherwise, uh, we wouldn't be here, Harry, with this laparoscopic techniques and more importantly, Victor Gomel as the father of microsurgery, where we, we are to do microsurgery to these patients to get the best results. So this is, I hope it plays. I don't have a sound, but, so this is a twin sisters, Eileen Regan and Francis Regan that, do I have the sound? I don't have the sound as usual. There's something, not everything goes right. But Eileen and Francis, they're both lawyers. They really made me going for this. They were my patients for a long time. They were diagnosed with endometriosis at the age of 39, 40. They had most advanced endometriosis.
They were very educated. They had every means, but yet, so they went, we, when we had our first endo found ball, they got up and they, they were the first speakers. They were twins. This is how got, how I got into how this disease is really genetic. I have another twin sister coming up, but the reason I put these twin sisters is simply because Eileen and, and Selena was 39, 40 and the others coming here, they also were the, in one of last year, I think, uh, they were diagnosed at the age of 21. So I think we made a difference. There are more women today diagnosed at early age, which I insist on if you leave something today from this or from after these two days, I will, it'll be my last slide, but I can say it now. Early diagnosis, early detection is key to prevention of anything that happens with this disease.
And you are not alone. This disease is treatable. Guys, people with uterus, please understand this disease is highly treatable. Let's not talk about cure. A lot of people are cured and they're not even here. They have children. Eileen and Selena moved on. I cannot even reach them anymore because they have another life. They, they don't want to remember what happened to them. They all had two kids each. Believe me, they delivered babies after the age of 43. So I said in the beginning, I am opinionated because I do a lot of surgeries and we go after every lesion. So this is little bit of my, our background. I mean, in one year, last year, last couple years, we remove more specimens maybe, but we yearly we remove more than 3,500 specimens on the, a average we remove 15 to 17, 18 specimen per per case.
Many of these specimens are scar tissue and inflammation. They don't show endo, but they are healed. Endo, they are past endo. 60 of them are endo. So inflammation and scar tissue is the black hole. The dark matter that we don't talk about, everybody diagnoses this with, with gland and uh, stroma, they call it endometriosis is more than that. Endometriosis is not only gland and stoma, it is the fibrosis, the kilo concept. You, you get cut, you heal. Some people heal with a very bad scar, even in the hands of best plastic surgeon, you can't help it. You are born with it. Your endometrium has stem cell, intrinsically sick and that they carry that, that innate, uh, genetic material that's coming from either from your mom, obviously that too. But also there's epigenetic and mutational changes that happens. We prove this is already proven. Don't believe in those people who says on Facebook groups, this, that, and endo is, has nothing to do with, uh, period.
They are wrong. It's been proven. Come on guys. You don't look for a for the baby cough under the ox. You is under the mother's, uh, between the legs. You know, please, you're gonna see more and more. I talk by experience and it really, it really divides these, the, uh, community and our excitement to go further, further with the disease. These, uh, I think it, it, it's like a cult activity that really try to get attention and try to be different. There are two more than 2000 to, to up to 3000 scientists working on this concept. It's stem cells and it's everything else. We are gonna go to that if I have time. So we, we do, we do, we have a map. We meticulously map where the lesions are in the pelvis. Most of them on most people have on the left side. Left side is more prevalent for ma for lesions.
Another thing, more, more endometriosis are on the left side. Chest cases more on the right side. It's all has to do with medicine. You know, there's a reason for that. If it was the other ways, all, all those theories were correct, it should be equal. It doesn't, so many times the disease starts with cardinal symptoms as painful, period, heavy bleeding and DGI discomfort. GI discomfort is the most ignored part of endometriosis. And it's always there. It's always misdiagnosed and it starts from the get-go with painful periods. There's always GI problems. And I'll explain you if I have time later. But then timeline of symptoms progresses into, if there is sexual activity, there is this perone, there's bowel symptoms get more pronounced. It's not any more nausea, general discomfort. There's constipation, diarrhea than painful bowel movement comes then accidental finding of cyst. Oh, I have a cyst, it's chocolate cyst or hemorrhagic.
What happens to the cyst? Well, if this chocolate cyst is a problem, there's no limitation on size. Chocolate is a chocolate cyst because it leaks, it leaks and it causes fibrosis and inflammation. Sometimes these cyst rupture is like a hand grenade exploded in inside from diaphragm to everywhere, everywhere. There's hundreds of implants all around. More importantly though, disease is progressive. These very rare, but chest cases only pop, most of them pop around at the age of 35. And there's a reason for it. The reason is diseases, progressive, progressive at the molecular level, it really melts the, what we call submucosal membrane tissue. And it kind of penetrates and there is a reason for it too. I'm gonna show you some slides. So let's move on. So I try to emphasize why enemy uses is what you really need to know. Alright? This is the layer of the body that is, that covers everything from vagina, upper part of the vagina inside, all the way to chest, all your discomfort that comes from, from, uh, that is related to endometriosis.
This has something to do with the peritoneum. Peritoneum is the vagal nerve, the same nerve that nerve 10, the same nerve that from your heart, from your breathing, from all the way to bowel. Moon controls everything. It's, it's, it's not a conscious nerve, it's automatic. It's the instinct of what we, what we live, what we makes us live without voluntary moments. Your heartbeats, you cannot control it. You breathe, you have to breathe. Your bowel moves when you're, that's the nerve in action. That's perton. And that's an also recently we graze anatomy, a new medical finding, if there's something new. Peritoneum, mesentary, all that autonomic nervous system has been declared an organ just recently. It's a couple years ago. Gray anatomy. It was, it made the news, but not too many doctors know. But you, you are lucky to know that. Alright, so, uh, this peritoneum, what you see is blue covers everything.
It's an extra uterine disease. That's why when you remove the uterus, it doesn't treat because disease outside the uterus. So we just had a surgery yesterday. She had, she came from Minnesota. I, I'm not gonna show her video, but very interesting. I have some pictures I can, she had hysterectomy. She has been suffering with gi symptoms like crazy. She says she's in depression. It started with her periods. It's the reason for her suppression. You should see the psychologist note on her. I mean, the lady had end all over, all her bowel symptoms were to do that. I'm very happy we get elated when we see these kind of cases because we know she's gonna do exceptional, well after 20 years from her first hysterectomy at a young age. So peritoneum is so beautiful, organ transparent, you know, like silk. It's all, every bowel slides there, however, and it is, this is, this is a example of case of endo belly drawing.
I think this is drawn by, uh, she is de is Deidre here? Yep. This is your drawing. Yes it is, right? This is her drawing. It's a beautiful drawing of endo belly on the right. It really, Deidre doesn't know what mentum mesentary is, but everything that is happening here has a representation inside this peritoneum have nerves all over guys. That's why people have appendicitis. You cannot locate it here. It's all over. And then at the end of it's gonna rupture, bang, it's right here. So that process takes a while. So thank you did for drawing that. But this other pictures shows you how this fluid inside, there's a, there's a clockwise circulation of the peritoneal fluid inside. So in the end it goes through the lungs to through, through the right side of the diaphragm to media sternum and it's becomes lymph uh, system and everything. But this is why later in life where thoracic endometriosis occur. But, and this is, this has also had to do with the way we find endometriosis in certain places.
So my definition of endometriosis is not any different. Uh, you know, like everybody else, uh, the endometriosis that doesn't belong, uh, the glands and stoma that doesn't belong, uh, that are there with outside the uterus, right? So, but there is something special about these glands that, uh, this strawman glands have their own estrogen making due to the genetic a variances, okay? Epigenetic and mutation lab. So they have more estrogen, more pro prostaglandin, more cytokines in it. Cytokines and prostaglandins are do chemicals that makes your bowels wild. So it's contracts, the gas and the chemicals. Cytokines makes you tired. Like, you know, these patients, the way you feel tired, this and that, this most likely there's, they are the negative, negative impact of the inflammation that really is transmitted to the body. So inflammation is like a little fire there. You know, when you have, you know, when you have cold, you have temperature.
The same thing is happening there in a mini, mini, uh, mini version. Yeah. So diseases, I just put this slide. What you see is two pins and two sacroiliac joint. So these women are treated for everything else but endometriosis for many years. In New York where everybody has the means to go to the best doctors, they go to orthopedists, they diagnose physical therapists, say, this is sacroiliac joint, this location, sir Sanders to, to the best doctor in orthopedics in hip surgery. Two pins, right? Two pins left, and they take them out. The pain continues. I have so many of these patients in my files and I don't want to get in. But how terrible things do happen when there are doctors who use their licenses for things that they may not know and are not aware of? Today I'll be, I bet there are very few doctors that is not associated here before anyway, they kind of know everything.
It's hard to, I think our biggest challenge is education, educating the medical community. Educating public is gonna be easy because public is the woman are the reason we are changing. I learned from my patients, I'll be very honest with you, I wouldn't be here if I did not, if I did not, uh, I wasn't enough for them at one time and I wanted to change. So that's crucial. So I, I show you this because these patient, this patient particularly has stage five frozen pelvis, but nobody bothered to ask that magic question. Hey, did you have painful periods or how was your menstrual cycle?
Uh, all right. So pain is the main reason these patients come. As Carly said, pain is uterine pain, perial pain. We really dig into the quality of the nature of pain. Ask these questions. Uterine pain is, is very common, but peritoneal endometriosis pain is different. Peritoneal pain is the pain that continues after the period is over, right? These patients typically bleed a lot. Also, the patient comes to us for fertility and the patient comes to us for mass. And um, in the end, the treatment is obviously as the patient wishes is gonna be surgical. So I put this slide because, um, this is very important. September 22, just a couple months ago, this is, we came to a point that there is no discussion. There is no more theory or hypothesis that endometriosis uses do come from endometrial. At one point before, even at either, uh, at the time of teash, before the period starts, the individual starts growing or even right after birth for females, the sudden withdrawal of estrogen, progesterone, there is a significant degree of retrograde of the, of the endometrium to the, to the pelvis. And this has been proven by genetic studies that we really can do today. And I won't go into this, but I think please remember there are a lot of arguments. Endometriosis is, is some malarias and da da dah da. It is really not the case, right? I can argue this with anyone.
Okay? So I did mention you defectively programmed the endometrial. In other words, the programming stem cell programming of the endometrium is the key. This is the for are there any scientists here? PhD, mole molecular, anyone? There you go. There's one here. So it's important to, we doctors have to go back to our basic with respect to how we, we became doctors because they are the d driving force, how we think, how we conclude. I, I feel confident when I talk to, because I know this and I challenge others. So we are not gonna go to why these enzymes and everything. But I carry this slide around me. So Carly covered this, so I'm going to go fast. So this is for you to understand, for the period to come out. Unfortunately, it's easier to leak backwards than the cervix opens up. So it's, so when people, some people start complaining before the periods start and it goes on after the periods is gone because the blood is inside and we do our surgeries right At the time of period or right after, within the next even two weeks after you see blood inside and it's coil thing is like a, in a clot formation.
And you see endo, Iran, yeah. So it comes from the stem cells, that's the base layer when it is dislodged, that has, uh, propensity in some that, that can stem cells, you know, stem, the unique aspect of stem cells. They divide, they keep exactly the same, same cells to themselves. They don't change the other cell changes to the environment they're in. If, if they are, they are in, uh, in pelvis, they think they are in endometrium and they develop that, there's a reason for that. If they are in muscle tissue, they become muscle and other organs there. That's what stem cells are.
So these are again, blood that we see. This is early, the blood is coming right from the tube here. I caught it like a detective. I look at these lesions. This is another, uh, could we turn the lights off a little bit please? Sar, can you turn the lights off a little bit? So these are the amount of blood we see inside, as Carly showed, this is representation how this blood really gets stuck in certain caves and curves of the pelvis and other areas because the, the, the bowels are in constant mobility. So it kind of pushes them like, like the fish hides in the, in a upstream river under the, uh, coves of the, uh, roots of the trees, this and that. Similarly, these, uh, blood and cells really escape to the corners of inside. I hope that's self-explanatory. Anyway, okay, so we look, we get these, uh, we kind of get by, you know, we send it to this blood to pathology, and you see endometrial glands are there, you know, so this is before implantation or before it stimulates any other procedure. So I'm gonna move, I'm gonna show you. So this is the initiation of this, this how this disease pops out. It, they bleed as Carly said, and we like to catch these, uh, magnificent, uh, uh, you know, episodes inside. And this is how they are born.
I'm gonna go fast. Angiogenesis is like a placenta. It's like the power of life, uh, coming up in inappropriate areas. And then they are like protruding. They move. It's like little grape buds. You know, when we look under, under the blue, blue water, they're not usual. We don't recognize this with laparoscopy. They're stuck, but actually they're protruding like a little flower opening up. And then these kind of scenes, you don't see anything here. How about here? It's the same white lesions that are hidden with this blue dye technique. We see four to five times more. That's why we, we have so many specimens because we catch them otherwise not detectable with, uh, under the bright right light. So carli shoulder. So the top is the inflammatory lesion that you don't really, you just see a, you know, wide area of destruction there. But when you, oops, on the bottom, you see when we put the, there's so many holes there, the whole area is completely diseased. This is how we do this to blow it. And we see it like that. And when you look at these, so under, even under the peritoneum, it starts rooting down like you see in that it extends in like a little root. And the peritoneum itself very fine structure. You see how it is thickened like a leather in the end. And that holds the hole. And that's fibro roses then becomes the bowel will adhere to the ovary. That fibrosis becomes the, the, uh, appendix is stuck. The hole pelvis is covered with scarring.
And there are, I said there are holes. I mean these holes are probably the reason why sometimes the pain is more prominent. Some argue and theorize hypothetically that maybe the blood that really comes retro, retro uterine again, retrograde really directly impinges to the nerves and stimulates pain.
I'm gonna move. This is, this is how we really do these surgeries. Uh, I hope it doesn't bother you, but basically we cut without any, any, uh, you know, using electricity. And in the end you don't indiscriminately peel off. You just only you remove the areas that has a disease, right? So I don't wanna go very, uh, figurative with surgery. It's hard for me because I, I'm, I easily show anatomical pictures and everything. But this is endometrium with endometrium patients. We really pay attention to their o ovarian reserve. We consider the recurrence of the disease and pain. Usually if there's no symptoms, uh, you know, there's not much we have. We could observe them. But endometrium has have tendency to rupture when they rupture, when they rupture like this. This is very early stage endometrioma, but that ovary is stuck to the pelvic side wall.
Underneath that pelvic side wall. There are nerves, there are a lot of things, but this is constantly, this is leaking every we, every month there's ovation. Either the sis get back bigger. If it doesn't get bigger, the painting is increasing. That means it's leaking and causing more scar tissue. And this is a animation of what I think as when you say this chocolate material that's filled with dense blood eventually causes the cul-de-sac closure bowel getting stuck like this. So this is the woman who have constipation, cannot move their bowels with diarrhea, alternation pain with sex, intimacy, pain after intimacy. So both, when both ovaries are stuck, we call it kissing ovaries. But you see the nerve structure and a lot of very important things on the underneath that layer. They are completely affected with this pro process.
Would you see a surgery or not? So this is what, well, this is part of education. That's why you, you wanna know this. Okay, this is what happens. This is how, yeah, this is how a assists is being removed. This little fast forward. My associates are usual, very helpful. The camera is excellently placed. You see the healthy ovaries on the top and the cyst is coming down constantly. We are irrigating, so we don't wanna rip you. So my forceps are like very fine opposing to each other. Very gently in the end, this system is removed. This is a, uh, it is a diseased layer that holds that chocolate material inside. If you burn this, obviously you will burn and cook the rest of the eggs. So we don't use any electricity at all. It's just mechanical peeling. And, um, let me see. I want to show you atten rate. It is the most difficult surgery actually, because you really don't see the eggs. So you really have to be extremely, extremely careful. And then obviously this ovary has to be put back together. So it is like plastic surgery. So we, I kind of don't see my,
Oh, there you go. Okay. All right. So this is the cyst, this is the end of the video anyways. And the ovary is, is Dan, this is, this is the ovary afterwards, you see nice. And the cyst is, the whole ovary is reconstructed. So it looks like new ovary in the end and they do exceptionally well.
Okay? The problem with laparoscopic surgery is it really is demanding to the very dependent on surgeons experience, commitment, patience, team. And you know, if you don't have the passion for it, you don't really develop the skill. You may be skilled for a lot of things, but you have to be patient and consistent on what you're really trying to do. This is what happens and we suspend the ovaries in the end so they don't get stuck. So ovaries are like little wings, okay? Of the word bird. It has to be free with the, with the tube so it doesn't get stuck. So this is type of deep endometriosis. How am I doing with time? Am I on time or, Hmm,
Five, seven minutes
Left. Okay. Alright. So this is deep endometriosis. It is the final stage of endometriosis. Deep endometriosis is obviously we see a lot deep endometriosis, but truthfully it is not as common as people think. But we, what we hear all these kidneys being lost, all these hysterectomies in the end happening, bowel, resections, chest case, those are all deep endometriosis. When the disease really starts infiltrating, it infiltrates to the bladder, to rectum. But it doesn't irrelevant. I mean you cannot stage pain. Pain is pain. I mean this disease at this stage has the same pain as peritoneal endo. That's why the disease gets unrecognized because doctors, if they don't see this, hey go, you have nothing. It's in your head kind of attitude starts. It's not, that's the time you have to act. When you remove disease early, it doesn't go to this stage. So rectum is involved, cervix is involved. You can identify these
Session if you wanna bring the patients or
Involved. Oh yes. What? While you tell me five minutes. So five, seven. Yeah. Alright, listen, I'm not gonna go in. It's better. Maybe some other time during this presentation we can continue. But overall there are, uh, patients here who we would like to hear their stories. And I want you, this is an open form. I really want your voice also reflected with them. Can we get them here please? So.