PATIENT AWARENESS DAY 2018:
LIVING YOUR BEST LIFE WITH ENDO
Sunday, March 18, 2018, (8am-5pm) Einhorn Auditorium (131 E76th st) at Lenox Hill Hospital, NYC
Where are we now with endometriosis?
- Oh my God, what a privilege. Beautiful day, beautiful people, thank you for coming here. We're gonna have a beautiful meeting today. Am I echoing here? A little bit? Believe it or not, for the last 20 plus years I talk around, this is the first time I'm gonna be doing this without sitting my computer screen in front so good luck to me, but I'm not bound to computers or robots. I'm a man to just spontaneously do things and say things so it probably is better like that. Sadly you have to cut me right when I have to be cut, okay? 10 minutes, 15 minutes. My talk is about, well obviously, where are we today, why are we here today. Let me ask you: how many people are from New York here? Well, most people are from here. How many people are outside of this New York area? Wow, there's quite a bit. Thank you for coming, it's a big effort. Let's see. Forward. How does it go forward? There you go. I meant to say this, anyway. So where are we today in endometriosis? Unfortunately it's been, these slides will proceed? I cannot seem to. Believe it or not, it's been almost hundred years when the word 'endometriosis' was created by the guy named Sampson. Who knows about Sampson? Sampson is the guy we trash nowadays, we say "Oh, this is the guy who started the retrograde bleeding and everything." However, Sampson was a very interesting guy. He was a surgeon and his fight was with this pathologist. Everybody want to claim this territory of endometriosis by themselves, but endometriosis was known to the medical field as a disease but they never called it 'endometriosis' before Sampson. Sampson was the the first guy who ever just started this. My slides are not advancing, technical guy. One thing about Sampson: he was an incredible writer and examiner. He got the name 'endometrioma', he drew fantastic figures, and finally he got the medical world to accept the word 'endometriosis' because the glands were the same and he said the only way that this may come here is through the endometrium. However, there's a huge fight and it has to do with the Sampson personality too. He was never married, he had dogs and he changed his car because his dogs never liked certain cars. This was the type of man you were dealing with at that time. But many things Sampson has said today, I'm seeing this first slide there, but not there. Many things Sampson has said today from the description of endometriosis to the cancer, to the adhesions, to endometrioma, how it spreads inside; is still the way we surgeons think. Except this retrograde bleeding period. Which, I do believe in that, however I don't believe it starts endometriosis as a cause, but it triggers it. It's the menstrual blood that has the genetic quality that has a way of sticking and provoking inflammation and the body starts reacting to it and accepting it and that fight is the biggest thing. If you're gonna take home a message: endometriosis is a disease of inflammation. Think like that. Forget whatever they have described to you, it's an inflammation, that's why people feel, women feel fatigued. They feel down, they're out of commission, they're worn. Plus the pain and everything comes, obviously, later. Must be that it doesn't want to go.
- So, Emma Whelan is a sociologist from Halifax, Canada. This article she has written grabbed my attention it says, "No one seems to agree, except all of us who have the disease." It's such an intricate sociological article that really says very plainly, only doctors may think women may be crazy yes there are man crazy, and some women are crazy, let's put it that, but this whole woman with endometriosis that says the same thing: they're not crazy. That's what the article's about. And this divide between the doctors and the scientific community, and the way the endo-community thinks, feels, is creating in the internet it's creating an incredible power of communication, collaboration, and camaraderie. Which, I believe, will revolutionize and has already triggered to change the endometriosis world. It's been ten years we're around, we started with four, five patient of mine we started this foundation. We were lucky and privileged to have some faces that are known on the t.v. join us. Yes, they were very, very influential to get our message across. Because of them, and I owe them, we owe them, also it was quick to get certain people, y'know after we'd started, I'll be honest with you, MIT started their own endometriosis center, or their lab,immediately , called us, we went there. And then Boston started their, Harvard started their endometriosis center. Can you believe it, after us? Michigan University, Johns Hopkins, California, private physicians focused their attention on endometriosis. So I am proud to say that we did make some change and in the last ten years more medical centers are opening up in a way, more doctors are focusing on endometriosis, surgical societies are making sessions about endometriosis, but it is not enough. I can tell you today: out of 40 thousand OB-GYN practicing or licensed out there more than 95 percent do not know how to handle endometriosis patients. I will say less than one percent know how to operate. The problem is even in the most sophisticated training program where we get specialized, say it is urological system, bowel system, gynecology, even in their cancer education this disease escapes. Somehow it is never on the radar. Because patients come at the last episode of their clinical challenge, with advanced endometriosis. They just rip the tissues out through hysterectomy or corrective radical surgery. I'm not saying that they're not needed, but nobody has time to focus on the disease involved, how we can find this disease early. So from the first day we started, my first conference was here and it still really resonates and is as important as it started. It was 2010, I think, or nine. The name of the conference was "From Stem Cells to Excision Surgery". Yes, today the focus is, like everything, stem cells, because endometriosis is a genetical pathology. Unfortunately, it is the stem cell that holds the code and everybody has some degree of different healing potential. Forward? It doesn't go forward. It's okay, I'm doing very fine here. "From Stem Cells to Excision Surgery". Excision surgery is the gold standard, it is, the word 'excision' derives, I did not championship this, Dr. Redwine, as you may well know, whom I have great respect, I don't have to agree with everything he says, but he's an icon and he coined 'the excision'. During which time I was in training in Buffalo, I was doing breast surgery. I mean, breast surgery, extremely important concept, because you remove cancer tissue without leaving any disease behind. So that's the concept. So this excision term is coined with endometriosis rightfully because many patients, who you remove the disease completely, do exceptionally well. Simple as that. Whether it is at the smallest level, whether it is radical surgery, it's all about removing the disease, restoration of the anatomy, and getting the normal functions by repairing and reconstructing. It's a plastic surgery, in a way, reconstructive surgery. Patients only feel it, we don't see it. With a nose job, you see it. With the dental work, you can go 500 times to get it corrected. With endo, unfortunately, the challenge comes, the doctor has, maximum, five, six hours, and beyond that doing surgery is not a very smart thing. But we, unfortunately, do find ourselves doing surgery 11 hours on certain cases. However, it's not easy to redo things that have been happening there for almost 20, 25 years, 15 years, this slow destruction of the internal organ. It's not easy to fix it in three hours. So I want your understanding there. From Sampson until now, I hate to say, not too many things have changed. Is this working now? Oh good, finally. Okay let's see now. So this was what Sampson did. We don't have to see his face, let's move forward. So I hate to be, the response time is very slow. This looks like a robot, that's why I don't do robotic surgery, I don't have patience for it because you sit in another room, it doesn't function well. So then 100 years later, finally, American College of Obstetricians and Gynecologists and Tom Gellhaus felt the pressure. This is getting crazy. Gellhaus finally said it's time to talk about endometriosis, 100 years later. This is the same college who trashed laparoscopists who, the doctors, they trashed and discredited the physicians who dealt with endometriosis for almost decades. They even called us 'gimmick artists'. So laparoscopy did not find it's place in the training of OB-GYN residency program for almost three decades. Doctor Reich will be here soon, I hope. But he will tell you his articles were refused, and he was constantly pushed away. His techniques were not at all respected, but he did the first laparoscopic hysterectomy and deep cul-de-sac excision for endo patients in 1989. It is almost three decades ago. The same college now is accepting endometriosis. Let's talk about it. Like many, many groups that are very strong internet groups where, right now, they're trying to talk to ACOG and there's significant effort and we support them, I salute them here, and we will be behind them, but this is obviously awareness or whatever Gellhaus is saying is not enough. It's education. Revolution and change has to come with science based education, collaboration, and translation of the science to the service of the patient's good. And you are the force behind it. We are surgeons, we are technicians, we are implementing, But we can't do things things without patients. This foundation wouldn't be founded without patients. It wouldn't be founded. With my personal experience with patients, with the feedback that I received and I advanced the way I did things and many doctors see themselves on the same chart. Thank you for coming here. I think I have to cut here. We're gonna have a great day, we'll stick to the program. I appreciate you coming. Thank you very much.