Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
How's everybody doing today? Are you guys okay? Saturday morning, spring is coming today, right? We got 50 degrees, maybe some sunshine. So, um, so I'm going to talk about in general what is endometriosis. I know a lot of you guys are experts on this and you can teach or run this lecture by now probably with all the research you've done yourself. So this will be an overview, but some of the basics in case anyone just was told, you know, you might have endometriosis and they don't know anything else. I'm gonna include a little bit for, uh, the novice to this disease too. Um, and then we're gonna go into a little bit on the pathogenesis, the staging, some surgical pictures. So if anyone is sensitive to that, just beware. There are some surgery pictures in here. Um, and, and a couple of things on the forefront.
Okay, so, um, what is endometriosis? And forgive my little cartoon, but I couldn't find exactly the one I wanted. So I just did a little cartoon for you. So endometriosis, when we look here, I should have brought a laser pointer. Uh, this is a uterus, uh, in the center and in the middle of the uterus is the endometrial lining. And that red part is meant to represent the lining itself that is shed every month during menstruation. And what endometriosis is, is actually this inner lining of the uterus. What makes it up the glands and the st stroma that like to grow every month in shed. Oh, awesome. Cper laser pointer. Yes, laser pointer. Yeah. Cool. Okay. Yes. So this part is the endometrial lining. Whoops, not that light over there. This is fallopian tubes, ovaries, cervix, uterus, vagina. A little quick anatomy lesson. So the endometrial lining every month proliferates gets ready for your period, and then is shed typically vaginally through the cervix.
However, we know that a lot of times it doesn't always go perfectly out the cervix and out the vagina where it's supposed to. Many times it can go retrograde that's backwards through the fallopian tubes and that can go into the abdomen. And endometriosis is when these endometrial lining glands and St. Stroma don't only proliferate here, they actually grow in random parts of the body. And right here, I've just shown a micro little photo of the pelvis. So they can grow on top of the uterus, they can grow near the fallopian tubes, they can grow around the, the ovaries. But most commonly in early stages, we really see it all around what's called the peritoneum or the lining of the abdomen. Kind of like a saran protective layer that gets affected by these little spots of endometriosis early in the process. And then as the disease advances, you can get deeper disease that goes more directly into organs, can create connections or adhesions between organs.
So I'm gonna show a lot of pictures of this, but this is kind of the little overview cartoon. Um, okay. And it is a, these areas of disease can grow in the pelvis, like I said, along the bowel, even distant places like the diaphragm, lung cavity, um, all different parts of the body, which are more rare, but it's, you know, typically intraabdominal to start with. Um, it's a benign process, however, I really hate that word and a lot of us do because it's not cancerous. So that's why they call it a benign disease. But we know, and as all of you know, as patients, it's really not benign for you in your life, right? So it's a, um, thing that can be life threatening in certain instances, not commonly. It can affect your fertility, your sex life, your relationships, your job, all kinds of parts of your life.
So I don't really like the word benign, but I put it in here cuz it's part of the definition. Um, it causes extreme inflammation. So it's hormone dependent, it's estrogen dependent. Um, and a big hallmark of this disease is all of the inflammation that it causes in your body. So a lot of the things that you're gonna hear about today and tomorrow are different types of therapies that could help in your own life to maybe reduce some of that inflammation. We know that stress and feedback are very important for this disease too. Um, so we've brought together a lot of different, um, creative minds to help you deal with this big part of the picture too. Um, it causes a lot of scar tissue, as we talked about before, painful cycles, painful intercourse. Many patients have bowel symptoms similar to or they've been told they have irritable bowel disease or irritable bowel syndrome.
It can cause infertility, miscarriage, and the symptoms can be some patients very minimal and they don't even know they have it, um, until they have something like infertility or it could be severely debilitating. And the confusing or difficult part of this is that the stage itself does not determine how painful that is. So you can have stage one disease and it can be really painful and bothersome, or you can have stage four disease and you sort of put it under the rug and you know, don't really sort of acknowledge what's happening and, and then it can be really terrible, um, but you don't really realize it's happening. So there's, there's no direct correlation between pain and where the lesions are, where the lesions are. There is correlation, sorry, but how severe they are. There's not a direct correlation. Who does it affect? It affects young women, teens, reproductive age, but even post-menopause.
And for the purposes of, uh, brevity, people born with malaria structures, however they identify uterus, ovaries, ovarian remnants, uterine remnants, um, this is who we're talking about. So one in 10 people born with uterus, ovaries, malarian structures, at minimum, we think it's probably closer to one in eight. Um, and in infertility patients it can be as many as 50%. Um, many of them with infertility have silent disease and they're sort of told, oh, you just have infertility. Let's just keep doing IVF and keep trying and keep trying. And that's less invasive than surgery. So let's just do 10 rounds and you know, they're not, uh, even given the diagnosis really. Um, it's more common in families. And we're talking about what's new in endo. There are multiple genes that are being studied right now. Um, however, there's no singular gene that's the cause yet that we've determined.
But there, like I said, multiple things that are in the works that we are going to hear more about, um, in the medical conference in a couple weeks. Um, and, but we do know that it is a lot more common mother with endometriosis, aunts, cousin, sister. It is more common in families. Um, how does it all start? So there's many theories on this, and suffice to say it is complicated. I borrowed this from Dr. Sukin. So, um, this has many of the classical theories. So part of it being retrograde menstruation. However, we know there is a big stem cell component. Angiogenesis, meaning the cells actually get new blood supply. And we see that a lot in pictures and the lesions actually can develop their own blood supply that helps to further them. Um, and so there's a lot of different components and a big part of this around the lesions itself, um, there is always usually inflammation and scar tissue we find out, um, on when we send it for pathology.
And that inflammation or the cells itself that cause inflammation will target your body to produce a lot of the same things that you get when you're fighting a flu or a virus or something else, which is why you feel, you know, tired, run down, you don't feel so great because it, you're producing those same inflammatory factors just like you're fighting, um, strep throat or the flu or covid or something like that. Okay? And that's why some patients may have elevated markers for inflammation in their blood, but that's not across the board. Not everybody will show that. Um, and so we don't always test for that. Okay? Um, these are some little tiny, um, early stage endometriosis. So we already talked about their hormone dependent. These cells love estrogen, they're progesterone resistance. So even though we try to manage a lot of endometriosis with progesterone to help, um, their progesterone receptors are a bit resistant to the hormone, um, benign, however, in my opinion, very destructive, right?
And some cases can contain precursor cancer cells or driver cells. Um, Dr. Sukin and a lot of the team at Endo found along with John Hopkins, um, did a study about this that came out in the New England Journal of Medicine in 2017 about the driver cells for cancer that can be present even in these benign lesions, right? So it is important to have them identified, have them removed stem cell driven. Um, and as we discuss it can cause deep and widespread scar tissue and dense adhesions, kind of worse than bubble gum. Very tough adhesions that are difficult to cut out and remove. Um, and those adhesions and the scarring can go and cause internal, you know, other organ involvement like bowel pressure or, um, infiltration of the bowel. And these can presumably also go into the nerve or suppress or cause pressure on the nerve above little surface nerves and that can cause pain.
And so even tiny lesions, um, whenever we see blood supply going to a lesion, there's always nerve supply wherever blood supply is going. And so even if they're tiny little surface lesions, just like a tiny pimple on your face that seems like an atrocity and crazy and you're, it's really bothering you and it's only one or two millimeters, that same thing in the pelvis can really cause a lot of issue even though it may be so small, right? And the good thing about pimples is they usually go away in a few days. These lesions do not. However, if they did, that would be a lot easier, right? If they just, you say, okay, let's put some cream and it'll go away in three days. These do not, um, causes a multitude of symptoms like we discussed. And then for some patients, none. And that's why it's very difficult for this disease and a difficult for even the providers treating it is that some patients may have no symptoms, some patients don't actually have painful periods, but they have terrible bowel symptoms or they have none of those things and they just have frequent miscarriages.
And so whenever they don't have the patho monic painful period, painful intercourse, painfulness, then it's missed a lot. Okay? Um, these are some nice blue pictures from our, uh, Dr. Ska and I like to take a lot of pictures in the or. So these are some early tiny endometriosis lesions. These are only actually one to two millimeters, but what you can see is there is a lot of blood supply going to each one. And we can actually see these lesions bleeding if we do surgery, uh, on your period. Okay. What should you track or mention to your doctor? So these are good things, homework for you to do, um, even before you see someone. So how are your periods? How painful are they? And you can do this month to month. Some months it's worse than others. And you may find that depending on your stress level with work or school, your diet, uh, how much spring breaking was going on that month, the cycle itself may change that month and be more terrible or more heavy or, or more painful.
Um, ovulatory pain, which side it's on right side, left side. Um, if you have any bladder symptoms like your peeing, often you're leaking inep. Um, and then a lot of bowel symptoms like gas, bloating, diarrhea, nausea, constipation or trouble, um, finishing a bowel movement, painful bowel movements, um, pain in the rectum separate from the bowel movement. These are all kind of things that we like to ask that can give us a clue to where disease is hiding. Okay. Um, and other pains associated with the cycle. Leg pain is very important. Hip pain, back pain, even chest pain. Um, and which side it's on, it's always good to write it down. And when it happens is very important. If it happened with your cycle on day two or three or if it happened, you know, two weeks after your cycle, it's good for you to note all those things down when it was.
Um, and then the history of fertility or infertility, if you've been trying to get pregnant, if you've had any fertility treatments and miscarriages, painful intercourse, even family history of a lot of miscarriages or trouble getting pregnant or keeping a pregnancy. Those things are all very important for us to know. Um, and what can you do in the meantime before you see a doctor? You can actually track all these symptoms down. You could write 'em down in like a little journal. We have some journals in the back there, um, later or when things happen during the month. I already said that one week before or one week after the dates. Um, and there's a couple of things in the app store. One that you can actually trust is fdo, uh, P H E N D O. And it's, um, by Dr. Noami Elida is doing research on endometriosis and the symptoms it causes.
And so she's using it as like a research tool tracker. Um, but you can track your symptoms there. And what she'll do is she's getting cumulative research on all the different symptoms that patients across the world have with their endometriosis every month. And so, um, that is a resource that is a, is a great one for you to use if you want. Um, early management options. So this is not treatment, meaning it doesn't get rid of the disease, but it can help you with the symptoms. And first things are like ibuprofen, Advil, um, what we call non-steroidal anti-inflammatories. And those help those inflammation side effects that the disease causes. And there's many different varieties of these. Um, and that's kind of the first line with pain with the period or pain during the month. Um, and some patients and doctors may try birth control early on, even in the teens to suppress the period itself and suppress ovulation, which could lessen the pa the period pain obviously if you're suppressing it.
Or it could lessen the pain with ovulation if you're not ovulating each month. Um, and so there's all different varieties of birth control. Obviously there's not one magic one. Um, but there's all different varieties and some people will start with still having a period every month and then eventually suppress the period as well, which is called continuous birth control. Um, there's also medications that are stronger targets from above, uh, GnRH agonist antagonist, things that you know of as Lupron and or Alyssa. Um, and a newer one, um, that is by, is called mure to suppress hormones from above, but also to, um, suppress the ovaries entirely. Um, and hopefully help with some of the symptoms. A lot of them are not well tolerated due to the side effects. Um, but some of the newer ones, uh, may have a better profile and a more, more promising as far as side effects go because they have a little bit of add back hormones with them.
So you'll hear more about that later. So I'm not gonna go into that, um, with Dr. Orr's lecture tomorrow, I believe. Um, and then diet and lifestyle alterations, these things are very important. Not everyone believes in them. Um, I found personally they were huge, um, in affecting some of the bowel symptoms and so low inflammatory diet and a lot of lifestyle things, acupuncture, physical therapy, a lot of complimentary things that can really help the day, day-to-day. And you're gonna hear a lot about all of that this weekend. Um, Deirdra was just telling me she's, where are you sitting? I don't know if she was in the back somewhere. She's gonna give you guys a little tidbit about it too. But she found a fascinating, um, myofascial release program that was really good. So there's all kinds of different things that are popping up and whenever you guys have good luck with him, you can always tell me about 'em.
Cuz I'm always looking for more things to help everyone. Um, okay, so diagnosing and treating the disease requires a laparoscopy or surgery where we look inside the belly with a camera and we look all over the abdomen, not just in the pelvis. Um, and uh, what did I write in today's world? Yes. So we don't like to just diagnose it, just look inside of the camera. We actually like to diagnose it but remove it at the same time. And so that's treating the disease at the same time as you're seeing it. And that's a minimally invasive surgery with a camera inside the belly button. And we look all inside the abdomen and I'm gonna show you some pictures of that today, whether you've had surgery or you haven't had surgery. Um, and ideally this is done with an excision specialist, uh, meaning someone that's really trained in removing and targeting this disease itself.
Not just someone that will look inside and say, yep, you have it, and then put you on medication because then what's the point of doing in anesthesia and, and, and undergoing a, a surgery and everything, um, you don't need surgery to have a high index of suspicion. So meaning you can have all of these symptoms and even if you don't have surgery, uh, we still can have a pretty good idea that endometriosis is probably there, but we confirm it with surgery, right? So some people say, oh, I, I was diagnosed with endo. And we say, okay, well how were you diagnosed? That's very important. If you didn't have something submitted to a pathologist to diagnose it, uh, there's still a chance something else may be going on. Okay? And so, um, so we do talk a lot about this with real diagnosis, with taking some of the tissue, a sample and sending it to independent doctors.
A pathologist who looks under the microscope and says, yep, there's glands there and stroma there. That's said no. Okay? Um, and so what we do in a typical office visit, excuse my crazy cartoon again, but what we do is we go over your history, your symptoms. We do a pelvic exam, always. We palpate all the points that are painful on the pelvic exam. That's very important. We do an ultrasound, we check on how the uterus and ovaries look, how the relationship looks between everything, how long the cervix is, all these different things. Um, and then we try to explain why your symptoms are in certain places and how the imaging looks and how the exam feels and what we think as opposed, um, what we think as far as your staging goes, where the disease is sitting, how complicated it is, okay? And what you can do about it.
Um, and we like to draw these little cartoons in the office and explain hmm, from a side, this is the uterus, bladder, rectum, and we like to draw where we think the disease is sitting, where it's involved. And the purple is where the disease is. And I drew some in the uterus on this patient apparently. Um, and so we kind of have an idea in our mind just based on everything you tell us with the symptoms and then your exam and the ultrasound or mri, whatever imaging you've had. Okay? And then we like to give sort of an outline of what are the next steps and, and what are your options, right? Um, these are some surgical pictures. So if you don't wanna see them, then close your eyes or just look at your phone. Um, this is quick anatomy lesson of a healthy pelvis.
So this is uterus, ovaries, fallopian tubes here. This is, so we're looking at the belly button looking, so if the camera is here, we're looking like this down into the pelvis. Okay? So this is the bladder up here cuz we're looking up at the top of the abdomen and this is the rectum down here. And this pelvis, we can actually see all these structures and they look pretty healthy and glistening, right? So we'll see what some abnormal ones look like after. Okay? And early stage, how am I doing on time? What time am I supposed to finish? Okay, so this is early stage disease and when we first look we don't see very much. It looks pink and kind of glistening like those other pictures, right? And when we start to look a little deeper, and Dr. Sukin creatively came up with this blue dye technique years ago, which really helps us pick up more disease.
We put a little bit of blue in a lot of salt water saline behind the peritoneal layer, and these lesions pop out all over the place and we see little windows and holes and all kinds of abnormalities. And so we start to pick up more spots. Here we are looking at this, this is an appendix and we look at how angry it looks here at the end and all these little blood vessels, just like we saw earlier with that angiogenesis or blood vessels supplying something we're, we don't like the way this looks. Right? Um, and then we can see this is the cervix. We see these lesions hiding behind the cervix. And this is actually, if you do a vaginal exam or have intercourse, this is the back of the vagina. And so this is why a lot of these spots can cause painful intercourse, painful penetration or painful pap smears exams. Um, and these are these little lesions hiding. And this is the cervix right here, the back side of the cervix. And right here is actually the rectum. And so even if the lesion is not on the rectum itself, when the rectum is full of stool, it can hit right on these spots. Okay? And so if you imagine those areas, and that's why these pictures are really important, then it can translate to why you feel, uh, certain of those symptoms. Okay?
And stage two, these are a conglomerate of different lesions. It doesn't come up as bright as my computer. Um, but this is all a patch of many different endometriosis lesions. The white area around it is fibrosis or scar tissue. And presumably all within here is inflammation too, what we were talking about. And the body basically tries to come here and clean it and brings inflammatory cells, but it can't really get rid of it, okay? But it's trying. Um, and so what we do is we lift these areas with little force ups and we cut them out with scissors and we send them to the pathologist, okay? And then we control all of the little blood supplies really carefully so that there's nothing going there. This is another lesion. And what we can see is look at all these little blood vessels going right to the lesion.
Okay? So, and there's more here, you can see more if you start looking at these lesions, it's Dr. Sukin always talks about it's like stars. When you look at the stars in the night when we start to see one or two, and then you lay there long enough, then you can start to see more and more and more, okay? Um, and these are just more pictures. And this is a patient that had a lot of these little specialization or a little artery arterial supply going to all these lesions. And these arteries are tiny. They're like one millimeter little, um, small arteries. This is stage three picture. Um, this is, sorry, it's blurry. Um, this is ovarian involvement. So these are the ovaries. And remember that first picture where the ovaries were off on the side and they looked nice and white. This one, the ovaries are in the middle and they're actually what we call kissing.
They're touching, and there's chocolate system here. We just can't see it yet, but there will be whenever we, uh, look inside the ovary. Um, and so this is a deeper involvement of the ovaries itself. And you can see the rest of the pelvis actually looks pretty good. Um, but underneath this whole involvement, there will be a lot of endo behind there too. Okay? And this is just a picture of some special green dye we use in the ureters, which is the pathway between the kidney and the bladder. And the ureters frequently become involved with endo because they're sitting right underneath the ovary and you can see this chocolate type cyst formation and the scar tissue around it. And so then it puts pressure on the ureter. So it's not always going directly into the ureter, but it can create a lot of those bladder symptoms if it's just around it, putting pressure on it. Okay?
And these are more pictures of involvement. So when we look at the uterus and the ovaries below here, this is the bladder above. And you can see there's tons of lesions all around here. Just what we were talking about. You first see these dark ones, which is what everyone's taught in medical school, but you don't realize that there's a lot of those tiny white peritoneal lesions and all different scar tissue in between them. And so really this needs a lot of excisional around here. And this is the same patient. This is their pelvis, right? So this is the front, this is the back, this is the cul-de-sac underneath the ovaries, the back of the cervix here, where the rectum is here. And you can see there's all different areas and this ovary here is attached. And so all of these things, this can cause right side ovulation pain, pain with bowel movements, pain with intercourse here. So pain with bladder, frequent bladder, uh, peeing all the time feeling like you have to pee all the time burning, uh, a lot of different bladder symptoms, these little lesions can cause. So altogether, hopefully this is helping you understand some of the, the symptoms, okay? Um, advanced stage endo, this is a picture of a late stage case that also was on their period or right after their period during surgery. And we just wanna show you, um, what retrograde bleeding looks like and when we see it.
So this patient's abdomen actually has, this is all blood. We did not cause this by the surgery. This is our first look inside and the abdomen has tons of free floating blood in there, and that's actually from old menstruation that came backwards through the loping tubes and is sitting in her belly, okay? And so we can sometimes find, you know, um, significant, a couple of cups of blood floating around the abdomen, sorry for the early morning pictures. Uh, but I just wanna show you that it can turn into, uh, involvement with all the bowels, the momentum, all different organs, the ovaries. And sometimes when we get in there, it's hard to even see basic anatomy, what we were looking for, right? And so this is what we call a frozen pelvis, stage four, where we go in and we say, oh man, we're gonna be here a long time, right?
And, uh, and, uh, our or stuff gets a little frustrated, right? So this is, this is the uterus, actually, this is a tube. You can't even see the ovary, but it's hiding behind here. Sometimes the appendix goes and gets stuck on the uterus. Anyway, there's, there's lots of things that can happen, but suffice to say, it can look like a mess and it takes many, many hours to, um, to take this all apart and clean it and restore the anatomy, okay? And these are lesions even up on the diaphragm in patients that have lung or diaphragmatic disease. And this can create symptoms like shortness of breath, chest pain, um, pain near your back on the right side or into your shoulder. Um, and so we look, we always check up here in the upper abdomen when we're doing surgery too. And again, this is that healthy pelvis, right?
So we see this and we say, oh my gosh. And then we see this, and this is like a dream surgery, right? <laugh>. So, um, so what's new in endometriosis? Um, you know, there's a lot of things that are currently being tackled research wise, and that's why we're coming together with the foundation, with the Gala Monday to raise money and the medical conferences to bring together all different minds that are working on this. So as we discussed before, there's um, a lot of people working on the diagnosis of it and the genes, but I don't have any concrete, uh, one answer for you on that, for this presentation purpose. Um, something important that was done this past year was Dr. Ted Lee, you guys may have read about this. He's the director of a minimally invasive gynecologic surgery in Pittsburgh. He, um, worked together with a lot of input from all the surgeons for endometriosis over the years.
We all submitted all these surveys and Dr. Lee pulled it together with a many of the governing societies and helped develop a new system to diagnose this disease. So why is that important? Before there was mainly one or two or three, a handful of codes that we physicians use to say, oh, this patient has endometriosis. We need to write her diagnosis down as a number. And it's called N 80.9. And before there was only one or a couple modifier codes we could use for this disease. And so unfortunately, when that one code has to be used for the entirety of everything you're experiencing, like the bowel disease, the lung disease, all these different places, it wasn't really justifiable that just that one little code described everything you were dealing with, right? And so Dr. Lee and the whole team of different physicians and and societies have worked together to make this to where now, um, we can describe endometriosis and exactly where it's affecting you.
So on the bladder, the ureter, the bowel distant, and the lung, the uterus exactly where it is. Um, and they made a whole bunch of different codes. There's over a hundred new codes. Now, I tried to do some animation, forgive me that. So there's a lot. There's like, I think 127 to be exact, but there's many, many modifiers now to tell where this disease is located. Unfortunately, it doesn't mean that they'll pay for that yet, but hopefully one day it'll, it'll happen. But diagnosis codes doesn't equate treatment. Meaning this yet doesn't yet say that you, uh, treated that place and you can bill for that. But it at least allows us to describe for the patient, uh, where the disease is sitting. Okay? And hopefully, um, if it eventually leads to better reimbursement. Although insurance companies wanna pay less and less, I'm not sure they're gonna wanna pay more for the codes, but, um, hopefully it would lead to more interest in removing them and greater interest in doing the surgery and training, uh, surgeons for this disease, right?
And, um, what we're working on with the foundation, um, is developing more surgical fellowships and surgically trained endometriosis surgeons that really work on this disease, the bowel disease that affects it and are trained in bowel work, um, upper abdominal work with cardiothoracic teams and doing a lot of the collaborative efforts across the world so that it's not, uh, just, uh, a couple of places that offer this surgery. Okay? So we're working to train future surgeons for that. Okay? Um, and what else? There's also a lot of advocacy work that the foundation is doing, and that's very important if you want to get involved. Um, Dr. Sukin and, and Endo found, has done a lot of work to get, um, these projects recognized by the government to help with education and middle school and high schoolers, um, and to help with more funding for endometriosis research.
So all of these things are very important and you can read about it more on Endo found or talk to any of the foundation people if you wanna be more involved with, um, you know, any of these causes. Um, and then the newer drug therapy options, Dr. Or, uh, we'll be talking about this tomorrow, I believe, with her hormone talk. Um, and so you'll hear more about different options available for Endo. Um, and I just wanted to add that everything we discuss in this conference, there are many different ways to manage and treat the disease, but obviously every one of you is completely unique. Your disease is in a different spot, your symptoms are totally different. And your lifestyle, how, where you work, what you input into your body, these are all very different. And so there's not one thing that works for everyone. It's, and that's why we're all collaborating this weekend in the next couple weeks to kind of pull together different things that you may want to try. Okay? Um, and everyone's response is unique, right? Um, and so same thing. We just want to collaborate. This is our team, Dr. Sukin, Dr. Chu will be here later. She'll be here tomorrow speaking too. And we hope you enjoy the conference. Thank you for coming on the weekend. Okay.