Patient Awareness Day
The Lifecycle of Endometriosis: From Diagnosis to Coping with Disease
Sunday April 17, 2016
Lenox Hill Hospital, Einhorn Auditorium
First of all I am very, very excited to have you here Sunday morning. You all come from a distance. Some of you I know travelled here by flying in, some of you by driving and some of you live very close by. There is one cause that brings us here and that is about the big picture. I thought that would be more optimistic than the “Black hole of endometriosis” speech that I gave last year. Most of the things are the same, the unknown, the hope and the high treatability of the disease when we do things right.
I want to share this picture. It has been almost 38 years since I finished medical school. I joined this crowd very early. This is the early 1990s – very famous people in my career as far as who performed laparoscopic surgery. These are the men in gynecology who essentially eliminated abdominal incision and brought small keyhole surgery to the world of laparoscopic surgery. Kurt Semm is a famous inventor from Germany, many of his instruments we still use; Jordan Phillips is the founder of the AAGL. You know general surgeons never knew about laparoscopic surgery, they all learned from us and many others, Franklin Lawford, Chris Sutton, Ray Garry, Harry, you see the back of his head, Arnaud Wattiez and myself with my dark hair then. I think my hair is whiter now.
I never left the group actually. Since then I have been attached and become addicted to minimally invasive surgery because I saw it was so helpful to women – no scars. You can achieve so much. You can see magnified, you can see things and do things and with incredible results. The most gratifying thing is that the patients appreciate that. And there is nothing more for a doctor to see and hear than a patient appreciating what you do. It gets you in and sucks you in – that is addictive. That is how the Endometriosis Foundation really was born due to many unhappy patients that we were misdiagnosing and then we found out they had endometriosis. Over the years obviously, my colleague and I will also call him my mentor because many of his techniques I copied and improvised, that is Harry Reich.
The first Blossom Ball I honored Harry. He did not even know that he was going to be recognized; he was very excited, it was very touching. Since then we have never stopped doing this. This is our 7th conference. Whoopi Goldberg was there. Since the second conference I have been on stem cells and radical excision surgery. The first conference we did was about that. It talks about the etiology of endometriosis, it talks about the real treatment of the disease; it does not change. We honored Linda Griffith from MIT (she famously helped grow a human ear on the back of a mouse.) and she got into endometriosis because she suffered from it. She got into the research and opened the Centre for Gynepathology Research lab at MIT simply because she knew we had started this foundation. We went there for the opening. She was incredibly inspired from the way we moved towards this cause. And certainly we honored Camran Nezhat whose input has been incredible, with his writings and bringing video laparoscopy to the field of endoscopic surgery. He first brought video to the O/R scene in the early 1990s.
Then we talked about this controversial topic, Lone named this, “Let’s Talk About Sex and Endometriosis”. That year we honored the famous Dr. Redwine who is a proponent for excision and he has written beautifully over the years, he is retired now. We also honored that beautiful lady on the right hand side – not these beautiful ladies, but that one, Caroline Gargett. She is the original stem cell researcher from Monash University Australia. Her writings are incredible for researchers and for anyone who wants to read about endometriosis and research I recommend her writings. Today, we are going to cover the same topic and Lone will touch on the topic of painful intercourse and quality of life.
What I am trying to tell you is what we have done is part of the big picture we are going to show again today with younger participants of endometriosis surgery and the new generation of doctors you will see today.
Then we honored Hugh Taylor another stem cell researcher and surgeon, a good friend from Yale, with Chalie Koh, a wonderful surgeon from Milwaukee. This was about early diagnosis and prevention. And my younger colleague, Dr. Shin will unite you for those elements of early diagnosis, “Questions your doctor forgot to ask and early misdiagnosis”. You are going to hear her soon. Dr. Bruce Yaffe will talk about “When IBS is really endometriosis”. Again, why early diagnosis may not be possible due to our own misdiagnosis for years; as a gastroenterologist he will tell his part of the story.
Then we honored Serdar Bulen and Dan Martin; the “American Perspective”. It was about fertility and endometriomas, plus it was about early diagnosis and early vision. This is Serdar Bulen from the University of Northwestern. He is the one who did aromatase studies and gave significant input to endometriosis research. Dr. Kim will talk again about medical treatments of endometriosis.
Then we talked about the public health priority and endometriosis as a “Public Health Priority and Reproductive Right”. That year we honored Drs. Mettler and Linda Giudice. I think this is a very important topic and there will be a keynote speaker here today, Dr. Gupta, previously from Yale. He is going to talk about “Framing endometriosis as public health and social justice issue”. And finally, Drs. Ron Batt and Robert Taylor; this was about “Ending endometriosis starts at the beginning”.
Well, at noon you are going to see our own Nina Baker and Theresa Davidson and the Brooklyn Latin School talking about “Beyond individualized care”. They are going to introduce our program, “How the EFA is making a difference bringing awareness to young girls and boys”. Noemie will talk along the same lines, “Giving patients the tools to contribute to endometriosis research”. And our own Dr. Peter Gregerson will talk about the “ROSE Study: Improving clinical care by finding the cause”.
There are more studies and talks coming but most importantly we are going to talk about pain medication and dependence and how we can we avoid, and deal with pain, without using narcotics. There will be physical therapy, integrative nutrition and acupuncture sessions later.
Well, this is a very, very important topic for me personally as a surgeon because the subject bears the weight on surgeons, “Presumed precision with passion”. I want to share this letter that came to me two years ago. “Dear Dr. Seckin, I want to write you a letter as a follow up to our most recent visit because, my wife Kimberly and I are so thankful for all that you have given us. When we first began on the journey to parenthood, we had learned of Kim’s aggressive endometriosis. It was a very difficult three year period leading up to the point where we met you in May 2012. As if the catastrophic loss of the twins and the life threatening tubo-ovarian abscess my wife sustained were not enough reasons to be very pessimistic about the chances of ever becoming parents, the month before we met you, we were told that her last remaining ovary was to be removed, which ended our love affair with the notion of having our own children. As you can see she lost one ovary to ovarian abscess, lost the twins and now was getting ready for the suggested removal of her other ovary”.
We did her surgery. I did her surgery in this hospital. The letter is very long.
“But I am happy to tell you that my wife and I are parents to a beautiful, happy and really healthy baby girl. We wake up every day knowing that she is a true miracle and that we have you to thank. I am not entirely sure if you are a religious person but regardless I think we should lend ourselves to the fact that sometimes things happen that are beyond the scope of medical science and academic protocol; a miracle if you will. You accomplished something that, if my wife and I had a say in it, would be comparable to a life’s work. Your expertise was the catalyst for the most unlikely and impossible outcome, and we thank you, from the bottom of our hearts sincerely. For this surgery, you seemingly had to pursue perfection”.
I remembered, that is why I am reading this letter to you. I will finish this most important part that he put in, “Although the notion of perfection is realistically unattainable, it was something that you had to pursue. I now know that the reason why you pursued it was because you knew you would not obtain it. You knew that you would not arrive to perfection, because it is not a destination. However, you knew that in your pursuit of perfection, you would find excellence along the way, and excellence is what it would take to be successful in a situation where you wanted to help two loving people and afford them a chance to try to have their own baby”. I do not want to sound narcissistic but altruistically I am. This is what drives us and you are going to see every doctor that comes after me, Dr. Yaffe, Dr. Nezhat, Dr. Shin – everyone of us has a significant pleasure and interesting feeling within us that we want to pursue and do our best for the patient. Let there be no doubt about it. And we are not always successful.
The name of this presentation really derives from this. The patient says it is a miracle, it is never a miracle. It is not magic. You do the best. In endometriosis you are going to see – it is never magic. It is about commitment to removing a disease that is giving the patient a hard time, and it is recognition. This is an article that just came back and I saw it yesterday in my kitchen. It is the April 2016 edition of Fertility and Sterility. God, in the end somebody wrote this, beautiful, 48 patients, “Surgical removal of endometriosis lesions alters local and systemic proinflammatory cytokines in endometriosis patients”. Do you know what this means? They have measured all the inflammatory elements before and after surgery that they saw after excision surgery the patients’ values significantly dropped.
Well, Leslie Farland with Stacey Missmer from Harvard is going to present today the co-morbidities, “A high risk population for major chronic disease” that happens with endometriosis. In this study you are going to hear which study made the news last week or two, within the last month. Endometriosis patients suffer almost two times as much as coronary artery disease in the younger age groups and she is going to tell you why this is happening. We believe, and I think the article will also mean that it is about the systemic inflammation effect or other elements that come with it.
Endometriosis is a condition characterized by the presence of endometrial glands and stromal cells surrounded by reactive inflammatory fibrosis outside the inner layer of the uterus. It is inflammation and fibrosis that really characterizes the disease. It is not only finding the glands and stroma. Let us underline the word endometriosis. And there are so many things we can talk about. This is the ice we always referred to as an iceberg. People treat the top of it and I brought every element of this from the prevalence, incidence, etiology, definition we are going to touch on this meeting. But the fact is that at least ten percent of the reproductive age group suffers from it. Do you know that 50 percent of infertility patients have endometriosis? It takes a decade to diagnose and is a major cause for hysterectomy and pelvic pain in women and is a major cause of loss of quality of life in women. It is also important to know that the disease essentially has a high component of genetic linkage. A woman with a sister or mother with endometriosis is six times more likely to develop endometriosis than a woman without family history.
This is a very important slide from Vercellini in 2006. The black is stage one disease. Over a three year follow up after surgery and the recurrence rate – but you see that advanced disease has less recurrence and is less symptomatic than the early disease. That means we are not doing a good job in early disease, stage one and stage two. Why? Because most of the time, my assumption is, we are not recognizing the disease well enough.
Very quickly, the etiology that I stick to and many scientists, researchers stick to is the stem cell theory. Those are the stem cells of the endometrial glands and the endomyometrial junction that goes through either retrograde menses or other ways to other parts of the body and implants and stimulates another chain reaction that comes with the stem cell activity. This is the modern theory that unites the old Sampson theory, which is just pure transplantation via retrograde menses. I want to touch on this because there is a lot of controversy, people do not understand. It is difficult to understand endometriosis. It has been almost a hundred years and we are still debating that. Most researchers think this is the way things are happening.
This is again the lesions that I always show. It is not only the stem cells of the retrograde menses. Those blue things that you see above are the stem cells that respond to it with angiogenesis from the peritoneal aspect.
This is one of the early lesions budding of endometriosis. I like to take photographs. This is how this budding gets into more budding format. I will have more of these pictures to show tomorrow. This is how it looks under blue water. These buddings, these vessels like grape pieces hang out there and they break. This is the first sign of stromal endometriosis.
The real treatment is excision; that is the gold standard. We need to remove the lesion in total and leave the borders free. As you see this is the main lesion and on the sides there is clear cut pure cut excision. We do not recommend laser, ablation or fulguration.
I would like to stop here and connect via internet to someone in Alabama. This is Tory. She came to me two years ago, Tory, hi, how are you? Hello doctor! Tory was operated on in this hospital and I thought her story was unique. She is a young woman who came to me from Alabama after she had this surgery. Could you tell us about your journey? What happened to you? Why did you come to New York and tell me about your symptoms? I will show your surgery video later, okay?
(Tory) Great, absolutely! First of all, thank you for inviting me to participate in this today. This is definitely an issue that is very important to me. When I was about 13 I started having symptoms that at the time I obviously did not know was endometriosis; severe cramping, periods that were very long and the doctors definitely did not know what was going on. I was misdiagnosed with PCOS, cysts, and just dismissed for many, many years. When I was 23 I pretty much made my female gynecologist do an exploratory surgery and she found endometriosis. Without my consent she did an ablation, which is burning, and it turned into about a three hour surgery of her doing this. After the burning the symptoms became so much worse, just 100 times worse. When I finally decided that my doctor did not know what she was doing because she wanted to prescribe me Lupron, and that was the only option that she gave me, I decided I was going to explore other options.
I had heard about Dr. Seckin, had heard many good things about him. When I called him and just started to tell him my story he started telling me what my symptoms were before I could even tell him and I was like, “Yeah, this guy knows what he’s doing”. I came to New York and he did my surgery.
(Dr. Seckin) Let me just summarize some of the things: she had a robotic surgery, ablation, she is 23. We thought classical endometriosis and this is what we saw when we looked inside. She had major bowel disease. This is the way things looked inside. We typically do suspension, suspending both ovaries on each side so we can see the pelvis. But most of you recognize endometriosis lesions, like these lesions. After suspension we basically – this is the right side – this is the tube ovary. This gives us access to the pelvic side wall. She has major bowel disease, almost obstructive bowel disease. That is the ureter on the side. You see all these lesions, typical endometriosis, fibrotic endometriosis that has been burned before, yet the lesions pop back because burning does not take care of it. This is underwater, a blue water exam which makes me see things in a better and contrast way so I recognize it. It also makes the lesions float if there are any vegetative lesions.
After this we do a little retrograde infiltration of the blue dye. The catch of this is basically we do cold excision as much as possible. We remove the disease. The purpose of this is so significant – you are going to see in two seconds –I removed 15 lesions altogether from her. That is the ureter underneath. You see the ureter that little tubal thing. And we did the same thing on the other side. Fifteen lesions are completely removed and the pelvis is open completely, the peritoneum is removed. The catch comes that she had bowel resection on top of it.
She had bowel resection and 15 lesions removed and the report came in that in five out of 15 there was borderline cancer – 23 years old. Please do not be scared, the incidence is not high but it tells you the value of excision. I cannot recognize with my eyes that this is cancer. I did this with all intention of removing lesions to help her pain. This is why, if we are here today, there is one thing for you to understand. For everybody who is listening, if endometriosis surgery does not move beyond ablation and cauterization and then Lupron or birth control treatment, and leaves the complete removal of the disease by excision, we are not achieving our goals.
I intentionally showed this video not to scare you but of the importance of pathological diagnosis. Another doctor, a pathologist, trained should look under the microscope and tell you that everything is good to go, it is negative and all the lesions are removed. For that reason I would like to connect to Tory again and finish this.
So Tory, later she can tell her story of what happened. Tell us what happened quickly, we are almost done because my time is up. (Tory) Just to say thank you so much for what you did for me. With those cancerous cells if you had not found them by doing the excision I have no doubt that I would be dead today. Thank you very much for that and for everything you all did.
(Dr. Seckin) Thank you very much for joining us. I do not know if Dr. Nezhat is here but we are honoring Dr. Nezhat who is a cancer specialist, a well-known figure with all the family being very active in endometriosis and minimally invasive surgery; one of three brothers of very successful surgeons. Dr. Nezhat is a gyn oncologist. He is not picked by accident because he is my friend or he is handsome. He really did so much for this cause as a cancer surgeon. If he was here I would let him make a couple of comments but I am sure you are going to catch him this afternoon. He will take it from there.
I thank you for your attention. I am so grateful you are all here early in the morning. This is a big turnout, thank you very much.