Lunch & Learn with Padma Lakshmi Nurses conference 2012 - Tamer Seckin What is Endometriosis? Why Early Detection & Intervention are Important
First of all I like to know my audience, our audience, how many of you are nurses? Hold on, let me check. How many are school nurses and how many nurse practitioners? Any physicians? How many of you, I do not want to be personal, but how many of you have someone in the family, including yourself, who has endometriosis; mothers, sisters - wow - this is a great crowd.
I am a surgeon, I work at this hospital. I work approximately 100 feet away from here in room 24. Every Friday I start at 7:30 am. My wife here, I thank her for everything, she knows what time I go home, sometimes...two weeks ago I was home at 3:00 in the morning. We do get very, very difficult endo cases, which you will be seeing. I really thank the Foundation that gave me the power to speak here today and have the passion to continue to talk and do our cases. We all thank our patients for their support. I would like to thank you for this Saturday, you all came here. I would really like to thank the Foundation's dear supporters, Jan, Alexis and Christina that helped this organization so that this meeting happened. Of course I would like to thank Lenox Hill that gave me a room dedicated to endometriosis surgery. I think it is unique. We have a team of surgeons; we have a team of nurses and techs that know what goes on in this room.
So, the first slide is about the lecture I am part of next week in Las Vegas. I am one of the teams that are going to be talking about deep endometriosis surgery. I will talk about complications of course, but look at how this course is described: "Due to the inexperience in appreciating diagnosis prior to surgery, the complexity of surgery itself and the potential need for a multidisciplinary approach, many women with deep endometriosis are not satisfactorily treated at the time of their initial laparoscopy surgery". Would you all agree with that? It is as true today as it was years ago. Nothing has really changed. Today's subject, especially my subject surgery with respect to adolescents, adults and young adults it gets more complicated.
Sorry about this, this is a surgical video. I do not have many surgical videos but this is just to give you, I hope can handle it, this is a nurse with infertility problems that came...for ten years...her pains started from childhood. Deep endometriosis, she could not walk, she was always holding her left leg and this is what we saw. The nature of the disease, I want to say, it looks not bad for many gynecologists but as you touch it, it moves in, it is deeper, it is very beyond, it is deeper, it is like an iceberg. In this case I want to...typically we do these kind of cases...you see the left ovary on the side. This is the left side broad ligament. We basically freed the ovary, and then we pulled the ovary up like an ear is hung so it frees and we go to the next. We really clean all the tissue as we can. This is suspension technique that we use. After the ovary is clean I put water in and I give blue dye beyond the peritoneum so it gives me a great contrast. All the lesion pops out so I know where I will excise. It is not what I see with my naked eye it also gives me a great contrast. Then we go retroperitoneally and we cut everything above the ureter and free it. This is all diseased tissue. There is disease there. It is a very critical, very dangerous area that we need to clean. Otherwise, if you leave tissue behind the patient comes back. She is never treated. Even a little bit is enough - we really do not know what lesion really causes symptoms, right?
Let's move on. I just want to show you, you look at this picture right now, many doctors here in my hospital even, "Ah, a little scar tissue - no problem". They would say this; however, when you give the dye look how this peritoneal is deformed, like honeycombed or leopard skin - more lesions pop out. This really tells me how wide I should go, how deep I should go.
The ureters are the things that we really pay attention to and the rectum. Endometriosis is like a rock in a hard place. You really cannot...you get stuck, especially after so many years of suffering the woman comes at the age of 30 to 40, it is in their period, they have been suffering for 20 years. Everything is hard. Do excessive surgery and you end up with complications. You do too little and it is never enough. You do not know what to remove, what to leave, everybody wants to leave their fertility, their uteruses. They want to protect their ovaries. It is so difficult on us too. For years I found myself in a dilemma of how to do better and better.
And that is why we are here today. We are here today for those kids who would end up, if you do not do anything, will end up with final, end-stage endometriosis. Can we prevent this disease? Can we do something early so these women can have children, do not go through hysterectomy or unnecessary 500 surgeries. This is a picture I took in Iceland in 2006.
We have a fellowship program in this hospital, this was supposed to be my first slide and obviously politics is never, when it is female issues, Melissa Harris; I could not believe when I saw her pin, it said uterus there. Look at that, I knew something was cooking! I knew something was cooking and there you go. Elizabeth Ann Levy comes and talks about her endometriosis and the politics...everyone has heard about her story. So this is highly politically charged but we have not done much. We talk, talk, talk...talk does not get anywhere.
This is somebody whose writing I adored and I recently knew this person just by reading her stuff. She is a social anthropologist and only studies endometriosis. I could not help it, her writing is so beautiful, let me introduce you. Her name is Emma Whelan from Nova Scotia, Canada. She is a social anthropologist, PhD. She has written beautiful articles on this and I called her, "Emma, I read your stuff. I cannot help not to invite you to this meeting" but she could not come. "But I will introduce you to the crowd", I said. Look how beautifully she wrote her story. I said, "Write me your story. Let me hear you. What is the situation with you? She wrote me this and I thought maybe I should ask her permission, but I did not. I probably should, forgive me. As you see, she remembers her mother's problem, "As I remember the surgeon who upon his first visit with mother scheduled for emergency hysterectomy. The surgeon who said that when he opened her up she was such a mess of adhesions inside that he could hardly tell one pelvic organ from another. Under my mother's tutelage I learned not to be the nervous type, especially not when I met with doctors. And I learned to suggest endometriosis and push for diagnosis when I had chronic pelvic pain in my early 20s. My doctor listened and my life has been very different from my mother's. What strikes me as a sociologist who now studies endometriosis is that incredibly 30 years after my mother's hysterectomy so many women still tell stories like my mother's". I will leave it like that. I will just tell you very briefly how I look at this.
Endometriosis is a syndrome of pelvic pain in reproductive age women, primarily with periods, gastrointestinal symptoms, fertility problems and loss of quality of life. It is all about the period. It is the disease of the period. It is disease of menstruation. It is like menstruation gone wrong, uterus gone wrong; so many things happen. Every month there is ovulation then 15 days later there is the period if there is no pregnancy. Four hundred of them in a lifetime of a woman this happens. But there are periods that do not come out. Endometriosis is the disease of those periods that never made it out - stuck inside.
Inherently, these periods, this endometrium itself, genetically its material is different than the people who do not have any. Those people who have endometriosis, their endometrium, their cellular components, are different. They stick differently to the body, cannot clean that period material fast enough and it really comes from this endomyometrial junction where there is the production every month of menstrual material, stem cells. The body's richest stem cell factory is endometrium getting ready for a baby. All those cells are ready to differentiate so fast, so adaptable. Those cells probably go through some mutation and when they come inside the peritoneum probably the body is fooled with those cells' ability to adhere because the cells that go there actually die, normally they die. They are eaten by the body's defense system in the peritoneal fluid but then some cells fool the body. They give a fake pass in a way and are admitted and cling and become endometriosis. It is the endometrial tissue outside the uterus but really not exactly the same tissue.
The reproductive tract has a lot of things to do, so I did mention about endometrium, we are going to go into that. Basically, even the nerves in endometrium are different in endometriosis patients. These endometrium have different nerves cells. That is why they transform into nerve cells. This is all proven. There are obviously women with obstructive, ____ difficulties and fibroids. We believe right now even fibroids are from stem cells gone wrong. The story is going there. Fibroids are similar, fibroid is our progesterone dependent unwanted son, and the endometriosis our estrogen dependent unwanted daughter of the uterus. In the end they destroy the uterus.
One thing about pregnancy, endometriosis patients have increased implantation difficulties, early pregnancy loss. Later in pregnancy they have ten times as many complications as placenta accreta, percreta and breathing issues in the third trimester. We just had two hysterectomies in the last couple of months because of this reason.
This is a slide of an outflow difficulty. Thank you Dr. Regard, she made sure that I put this slide in. Unilateral persistent painful cramps during the first year of menstrual life may be an indicator of outflow obstruction. Those are Dr. Regard's words; I stole it from her written material. Is that right? Did you mention this? There are ways of different types of malformations obviously; you can have double uterus, septum. What we are saying here is rudimentary horn, not that common but there is no need to really, you have got to be sharp here. If there is one side pelvic pain consistently, there is something different going on there. That could be a rudimentary horn, the period is accumulating there and never coming out, it needs to be diagnosed. Those people should not be on birth control pills. With an MRI they could be diagnosed.
What is the origin of endometriosis? I have told you it is the stem cells; stem cell is the recent theory and it really embraces all the other theories of the old times and brings a new vision to it, new lenses. Now it really is the code. We really...I think we are deciphering what is happening there.
By the way, did you also notice I raised my hand if anybody...my family has very strong male breast cancer and female ovarian cancer. I operated on my own cousin for endometriosis and it came back cancer - young, 41 years old. I am very interested in the subject personally. We will go on.
Basically, these cells have a way of attaching and peritoneum is one of the most beautiful - it is an organ - one of the most beautiful organs in the body. It is very shiny, transparent, one cell layer underneath beautiful fibrous material. But what happens when this menstrual blood comes? It starts hitting the first cells and they start detaching from each other. You will see, this is iron deposits, hemosiderin macrophages. These cells lose their connections. So the next layer of cells that come...as you see the underlying vessel is spiraling from that effect. Whenever I look inside...before I even see the pelvis, when we start laparoscopy, if on the bowels you see these spiraling things on the bowel, I definitely know there is endometriosis because this is a specific sign of how vessels react to this possible endometriosis initiation in the pelvis. This is the appendix actually, it does not look like typical endometriosis but how these vessels are curved and engorged - it is similar to the spiralization of the period on the estrogen effect at day 14.
This is an animation I created. What you see is continuous overflowing of blood, how it accumulates as debris as a layer up there. These eventually will separate these cells and the iron contents will sink in, the vessels will pop out and these stem cells from above, that do not want to die, will give an SOS and the stem cells from below have a way of communicating. The guy downstairs, the vessel, will save the glands upstairs. It will reach with a hook of new blood vessels and when they are crying for oxygen those cells eventually will be made part of the body, will be admitted to the house. Then it is graft versus host situation, you know that phenomena, right? You take someone in and he takes care of you in the house. Basically that is what happens. Vessels go up and there is an SOS communication between these - this is my way of understanding how this is. I show this and I get a good response on this. Basically, at the end as this communication, these vessels go up, they know something is happening here. They know another gland will come - see how that spikes there? I am going to show you these pictures. This is exactly how it happens. I am a photographer, I love to take photographs and you are going to see beautiful pictures. Once these glands come, as it dies now, this guy is ready to save and give a rope to the other guy up there. Look, the color is brown. You are going to see that. ET - bang! The gland is finally oxygenated. It is part of the body, it is over. Now it will survive there, we call that inclusion cyst. Every month it will be renewed, the stem cells will replicate it and new ones will come to be.
This is the example of how the peritoneum is destroyed. The vessels pop out. You see no vascularization and micro periods and micro bleeding. Something happens from the vessels that come from outside. I thought I should show you these because I do not think - you all read textbooks and stuff but I do not think you have a chance to see any of these pictures. Nobody really sees them because...I am also very interested in these that is why I take a lot of pictures.
These are all fibroid changes in this, again bleeding. It gets deeper and deeper, it gets white fibrotic, now it is attacking the nerves underneath. Now is the tip of the iceberg. You do not know what is behind this. If you lift this up you can have big lesions. You do not know what is there. It can obstruct the ureter, it can go on the rectum.
There are nerves on the side that are ureter so every time these blood vessels are formed, there are nerves around them. Endometriosis is really inflammation that goes all the way into neuropathy. Nerves are directly or indirectly affected.
Very fast on staging, this is my staging of endometriosis. You have been reading about FS stages, it has nothing to do with a patient's pain. It does not. How can you stage a patient's pain? Pain is very personal and it does not correlate. You may have a small lesion that is causing it, and you do not know how deep it is. It may look normal but you do not see how deep it is. We cannot stage the endometriosis the way fertilitists do. Fertility people do it for their own reasons. Not for pain purposes. I have said, and a lot of women talk about this; stage five endometriosis is when the disease invades the whole uterus, vagina, bowel, into the mucosa of the bowel, into the ureter, into the diaphragm. This disease is different from simple stage one disease when you have implants.
There is deeply infiltrating endo. That does not necessarily mean it is organ infiltrating disease, which is stage four. Very fast we are going to see these. This is an animation of how the rectum is pulled up. This is a vagina in normal healthy sexual act; I depicted that - how the cul-de-sac is an incredible place where the baby really comes out. It gets as big as 10 cm and it folds - we remove a lot of specimen from the right hand side from that very thin area that is natural orifice surgery. You have been hearing - that is how things really come out. You see what happens there when the endometriosis invades that dyspareunia. In other words, another look at this area, how the adhesions start from the sides and starts obliterating; as I told you, it is a retroperitoneal disease. This is the cervix, ureter - it goes all the way and causes hydroureter all the way to the obturator artery. We have seen cases like this. These people cannot walk.
In the end, obviously, this little animation shows you how endometrioma is formed. This is an inclusion cyst and these chocolate cysts at one time break and the patient ends up in the emergency room. Endometriomas typically start later. They are asymptomatic. They do not really cause as many symptoms as peritoneal endometriosis. So, over the years as these spill out to the pelvic cavity, the rectum fuses the back of the uterus like this; just showing an animation, no blood.
This is another mild disease example. This is a small endometrioma one side and this is how we see the peritoneum gets little pockets, fibrotic on the left. It breaks like this. I am sure Dr. Regard has seen many of these cases, ruptured endometriomas being admitted as PIDs until...nobody believes her...no temperature, no microorganism is developed there, typical antibiotics. The poor girl says, "I didn't sleep with anybody for five years" or whatever. Never has but - hey! It should be PID. We all know those cases.
This is a cyst capsule that is like a big butterfly. We need to take cyst capsule like this. This is a case I just did, basically infected endometrioma with suture material that they could not...supposedly she had both ovaries removed but her ureter is obstructed on the left side. Obviously the disease goes to the bladder! We cleaned the bladder, this is the bladder. Endometrioma is out - on repair. It is on the ureter, hysterectomy material so sometimes you put stents reversely. It is in the rectum and sigmoid.
When we come to the adolescents though, adolescents are a different view of endometriosis and laparoscopy. Red lesions and vesicular lesions are the most common. It is different from adults. Adolescents with cyclic pain, nausea and constipation have the largest proportion of red lesions. This has been known for a long time. But when the redness turns into white scarring, we see persistence of pain in more prevalence in these patients. Larry Demco, a friend of ours from Canada has done this kind of work a lot. They have looked at the areas where endometriosis is found in adolescent patients and I am not sure how much I agree with everything because everybody has a different way of describing these things. I find in my population, but in adults though, I find endometriosis more in the non-reproductive organ surfaces than the reproductive organ surfaces.
In other words, more on the pelvic sidewalls, more on the...as much in the rectum or deep pelvis than the ovary and tube. Rarely is it on the tube actually. Despite everything, rarely it is on the tube. And in the ovary really, it is not as common. Endometrioma is the worst thing there; that is really...when there is an endometrioma it is like an internal endometrial cavity. It is like you have secondary cavities as internal periods. But if there is not endometrioma things are different.
In our series we did almost 1500 excisions, only 20 percent were in the bowel and the rest were lateral walls; lateral walls more than cul-de-sac actually, both lateral walls.
The endometrioma is something that we need to be very careful of. There are three types of endometriosis; one is peritoneal, one is endometrioma and then deeply infiltrating endometriosis of the cul-de-sac. When there is endometrioma there is always peritoneal endometriosis. But most of these patients after a certain point can be asymptomatic. Once they break then after that... So some people will see in the symptomatology section that I will show, one third of the patients never complain about pain until the age of 23, for example.
Chocolate cysts - we have seen this slide, let's move on. Cyclic pain is the most common component in these girls. Eighty percent of the pain is primary symptoms, for some 90 percent for some 70 percent. But most common is a painful period. In the absence of a period, cyclic pain varies from nine percent...I see more gastrointestinal symptoms in these patients and obviously we should be aware of these.
What is the treatment? Unfortunately the only treatment that works for this right now, practically, is surgery. Good surgery, quality surgery, very meticulous, very pixel resolution style surgery that does not leave the disease behind. Today, I think, you need to be aware that doing laparoscopy does not mean that someone is doing laparoscopic surgery for endometriosis. Doing laparoscopic surgery does not mean that they are removing the disease. Doing minimally invasive surgery has nothing to do with endometriosis surgery. Endometriosis surgery is the most difficult surgery you can ever imagine. It is much harder than cancer surgery. Oncologists...when you say endometriosis they scratch their head and change their direction, it is true. And they just say, "Ah, it's not cancer, I don't want to deal with it". They all work for an institution, they all come from an institution, they are not trained, they do not listen; they are semi-God. I am very open about it. I say it to their face also. Unfortunately, a lot of patients do come from their hands too, not treated and completely cleaned up other than a hysterectomy. A hysterectomy does not clean endometriosis if you do not clean the disease that is outside the uterus.
Laser surgery, robotic surgery do not...it is excision surgery, ablation. This is fulguration, this is the electricity being applied. You see how that surface tension increases, how that peritoneum gets tight? Many of my patients who come to me are treated with fulguration. We do a fourth surgery; one person I have operated four times, five times. This is the excision model we have. You clean up and the surface tends to give up everything you can see, the underlying tissue if there is anything left. If you do not really give power, electrical power, this tissue is its original color...it is blood, this and that. We use micro-bipolar to control mini bleedings. With laser there is no biopsy. It uniformly, beautifully ablates but there is no pathology. Again the tissue is crooked, you do not see the underlying tissue. You may leave and there is a high rate of complication in inexperienced hands.
This is another model, plasma, jet ablation, which I do not use. I only use excision. With excision the tissues let go, organs return to their normal...retract back. We think that; that is how the pain is probably diminished in these patients also.
Let me just go fast here, almost done. This is a case we did with neural cyst, psoas all the nerves. This is a young woman. This is her fourth surgery, operated by the same doctor, very conscientious. I looked at her OR report on pictures, luckily I saw what she did. She used electrical power on the bowel on the left side. As you see the ovary is suspended. This is the ureter. You are seeing this way the pelvic sidewall. On the left side you see the nerves there, which I almost...by accident, if I was not very...I probably have slipped that valve that night. It could have cut very easily. This was how it started. This is the nerve, obviously attached, this is endo, it came back definite endo. This is the lateral cutaneous nerve on top of the psoas and iliac muscle on the side. As I move on more nerves are coming, this is the...I think that was the iliac inguinal and this is the lateral cutaneous, this is the medial one. This one comes out. The next day this patient thought her leg was free. She is 20 something, very young. This is the nerve. But this was her fourth surgery I think, fourth or fifth. This is how the nerves looked. Almost done.
This is an excision specimen...I used basically scissors. Just briefly, we are coming to the end of my presentation. Surgery is based on the principles of removing the glands and fibrosis. It is the same thing like oncologists do, "site of reductive surgery" for ovarian cancer. This is the site glandular fibrotic reduction with the purpose of restoring the normal anatomy. Complete surgical removal does not relieve symptoms for at least a year in 50 percent of the patients. There will be patients coming back after surgery. There is no prospective study unfortunately in adolescents. One study was done retrospectively by Stavroulis and Saridogan from London, and one is from our friend Dr. Patrick Yeung from Atlanta who did 20 cases, only 20 cases. They removed, excised though, and 17 of the patients had endometriosis confirmed. They were followed for two years and statistically pain symptoms, bowel symptoms, everything improved. However, 47 percent had to have the surgery redone. But when the surgery was redone in excision patients the pathology was negative. There was not much endometriosis inside. This was a very good study.
I think one hope I can tell you today, which I use...I have been using micro-laparoscopy for many, many years but technology was not there. We used rod lenses. I even did a hysterectomy in 1995 with an Imagine, the company name is Imagine, micro-laparoscopy rod. We did suprapubic laser, probably the first one in the world, in Brooklyn where I was practicing at that time. So now we have three mm incisions with instruments like this, we can really go inside and see at this resolution. This is a patient that from childhood...she is a patient who is known to Dr. Wilson also. We can go inside and see with the resolution. These can diagnose without...you can plan what you have to do with the patient. It is three mm. When you take it out there is no incision that you have to close, very esthetic, nobody knows you even had surgery. It can even be done under local anesthesia.
On the left side is the regular one cm scope and on the right hand side is the three mm. This is my OR, I took these pictures with my new iPhone yesterday. It sucks, it is not that good! I did a panoramic picture, it worked and once done, if you do a close up everything looks like this.
On the right side is the normal instrumentation, this is micro-laparoscopy on the right side. These are the lesions you can see. I mean, you can see the lesions. Now you can move ahead and you can even do the same surgery with it, you can stitch with it - no problem.
So, key point - endometriosis is confirmed in 50 to 70 percent of adolescents who have pelvic pain that fails to respond to oral medications. So let's remember that, alright? Evidence shows that cognitive behavioral therapy can improve a patient's response to directed therapy. So, surgery yes, fine, medicines fine. But support, the child needs to understand what she has, she has had, she needs to be loved and cared for. She needs to educate herself and we need to be honest with how she interacts. Dr. Wilson will talk about this subject. It is of great value in patient care, I believe that. Red lesions are predominantly in adolescents and are highly associated with pain, yes. Unilateral persistent painful cramps during first year of menstrual life may be an indicator for congenital anomaly. Dr. Regard, thank you. Mini-laparoscopic should be considered for diagnostic and for operative purposes in the treatment of adolescent endometriosis. And early diagnosis and timely intervention by excision surgery - complete removal - may be the best prevention of the disease to prevent further problems.
Unfortunately radical intervention increases the scope of major complications. Endometriosis surgery is at least, at least, five to seven times, morbidity wise, complicated than normal surgery. And complications are as much, at least seven times as much, there are more complications with endometriosis.
Well, I hope for better days, the waves give us hope, beautiful days for these adolescents. I hope we can help them. I think...I really appreciate your coming here on this beautiful day. It was supposed to be raining but I hope it will mean something for the future.
Thank you very much.
Moderator: Thank you Dr. Seckin. At this time we are going to open the floor for just two brief questions. We have addressed the room temperature in the room just so everyone knows. Give it a few minutes, it will warm up. Questions, we can take two and then we are going to take a break. Yes?
Audience Member #1: Doctor, do didelphys uterus and endometriosis have any connection?
Dr. Seckin: Of course, there is a higher rate of endometriosis in congenital, when there is any malformation, in the outflow. We do expect more incidents of endometriosis. But that does not mean...that is interesting...I have seen many cases of these in surgery. They do not necessarily have severe disease though. They may have mild to moderate endometriosis. They do not necessarily have deeply infiltrating endometriosis of other organs and stuff. That is a different animal, extensive endometriosis. It is the stromal component that is aggressive. It is a separate ballgame.
Audience Member #2: Thank you very much for your excellent presentation doctor. I do nursing research for a major law firm and I was told that mononucleosis contributes to endometriosis because it reduces your immune system. Is that...
Dr. Seckin: I will defer that question to Dr. Regard. I do not have any idea, nor have I ever heard.
Dr. Regard: I have not seen that in the literature. In preparing for this talk I pulled everything from medical therapies. I have not seen that in the literature but I think we do know that endometriosis runs higher if you have lupus or rheumatoid arthritis. Any women who suffer from immune diseases are more likely to suffer from endometriosis. I have not necessarily done a literature search for mono directly.
Moderator: Thank you everyone. We are going to take a ten minute break. Thank you.