Heather Guidone
Our next speaker is Dr. Seckin, who is Endofound's driving force, founder, president, medical director, chief cook and bottle washer and also the man behind the vision. It is because of Dr. Seckin’s passion and his mission to heal women that the foundation exists at all.
Dr. Seckin is not my doctor, he’s my boss, but not my doctor. Had I found a Dr. Seckin when I when I was 14, when I was 13, when I was 25 or 22, I would not have had 22 surgeries by the time I was 28. I would not have lost six inches of my bowel by the time I was 25. I would not have had stents in my ureters at 22 and I would not have had six years of infertility for most of my 20s. I would not have had a total hysterectomy at 28 years of age. So, when I tell you firsthand how critical our mission is to get the word out to young women and to really be galvanized to share our mission and to model our work after Dr. Seckin’s vision so that we can interrupt that process, believe me when I tell you, I’ve lost half my life to this disease. This is not just my job, I live it, I breathe, it, I eat it, I sleep it. This is my passion and it is Dr. Seckin who really sets the tone for the rest of us and really guides us. His novel vision on the disease in terms of research, his creation in terms of technology and developments, his expertise and his generosity at sharing that expertise with his colleagues and training the next generation of surgeons is what is going to help us make the difference.
So please join me in welcoming if he can get his slides to work on his Mac, Dr Tamer Seckin.
Dr. Tamer Seckin
First of all, I would like to welcome you all. I would like to thank you for coming here on a very risky day when snow might fall. I always forget to thank a lot of people when I give speeches. Let me start with thanking Heather first, Heather thank you for making this happen. I like to thank Padma always without saying, and very, very specially Padma’s mum – coming for this – thank you mum.
Well, it’s been a long journey for me. When I came here to the United States, you can tell I have an accent, I thought speaking English was if I knew old Beatles songs and Paul Simon songs I thought I knew English. That wasn’t the case. But I really knew those songs. I’d like to tell you a little bit how I got into endometriosis. How did I pick endometriosis? Whether endometriosis picked me or I picked endometriosis I do not know. All the training from childhood, I’m like many of you, I loved my mother. I know, as a female, what she lost, a loss of brother and such. Besides that in my medical school we did a lot of field work and I use to see people, young girls at the age of 14, 15 and 16 from a village setting coming to the hospital in sceptic shock. We were losing – these girls were dying and there is nothing you can do about that. They were gone…beautiful girls. After I came here, it was so unjust, I could never forget those scenes. I was very mad and moved, they were so helpless to these situations. And most of them were social. That sceptic abortion in young girls were social because they were trying to abort…somehow those methods…still being practiced in the world.
After I started seeing things here, the whole general female politics of taking care of women in my residency, most of it was about when seeing the emergency room setting probably all the pain patients were PIDs for us. We were labelling them, asking STDs, chlamydia, and on and on and on. Asking, how many boyfriends or whatever, as if she is sleeping with the rest of the world. This was so demeaning and not a single endometriosis was being diagnosed 20 or 30 years ago. All these books have thick chapters on psychosomatic gynecology.
The topic today is endometriosis surgery with “Excision with Precision”. I will not make this case presentation long. I am not a very good speaker, I speak with visuals and there are good pictures. I love to take pictures, I like to take incredible endometriosis pictures with a very close up camera. At the end, I want you to understand endometriosis even though it is so confusing. It is a simple disease actually you will be surprised to hear this. It is a disease that when you understand how certain things happen and from the angle as a physician it could be a simple disease.
First of all, again, I do not want to forget to thank my wife, Elif, who has put up with me for 24 years and I am a very difficult person – I am. I look for perfection, which I will never attain. I am a precision guy, I go crazy with details. I would like to thank my daughter, Serin, who did the poster. She just graduated from Brown as a chemist. We are all so proud of her, maybe one day she will become an endometriosis surgeon. That’s the first time I’ve ever said that. I’d like to thank the two others who do not know what they are doing so far, one is in college.
Before that, let me also dedicate this talk in the memory of my father, who passed away two weeks ago. There is a reason I’ve mentioned this, I don’t want any sympathy or anything like that. It is apoptosis, we die for a reason, for the new generations to come. Exactly like Steve Jobs said, “It is the biggest dimension of life – death. That death opens the window for new things to come. I say it because I know so much”. We have…this is also a dedication to my loved one…the person on the left is Ted Forstmann who has cancer, and the young generation where Ted was in my house during graduation, all these girls, and my father. I will connect these dots for you and I want you to feel at the end of this conversation that there is something about endometriosis and cancer, there is something why Ted got cancer, there is something why my father got four different types of cancers. But more interestingly, my father had prostate, larynx, intestine and breast cancer! My father had breast cancer. We have a very strong family of breast cancer. Coming back, my niece had endometriosis and endometriosis is related to cancer. She is alive. I did all her surgeries thinking it was endometriosis. We have a very strong family history of cancer and endometriosis and this ovarian cancer came.
There is a young lady in the crowd that I just met. I want her to stand up just very shortly. Over there (gestured), her sister died of ovarian cancer and she had endometriosis and they started a foundation. That is what she is here for, thank you for coming. The relationship between endometriosis and ovarian cancer is poorly understood. But we know for a fact there is a relationship. It is established. It is not being discussed, it is statistically…it is a very small…however we think, I personally think, out of the more than 3,000 people I have treated if I have in my practice more than ten patients, who I saw, there is, I know, more around. This is being underplayed. When most women are diagnosed at the age of 60, 70, we never know their menstrual history, what they did and their pelvic story. This disease just goes down.
This brings us to why you are here today. I will present to you the early disease. I want you to feel…how many of you are school nurses? Very nice, incredible. How many of you are patients or someone that knows me? Thank you. When you leave this place I want you to feel like you are an endometriosis specialist nurse. That you can understand the pattern of symptoms, appreciate the family history. If you have endometriosis the chances of ovarian cancer are six times more than other people. If you have endometriosis your daughter, again, has a significant chance of having it…more than 20 percent. This is important. I want you to understand that these young girls should not be made panicky. We should not alarm them; rather we recognize them conservatively and support them, we have to understand what their needs should be.
This is a picture I took in Iceland. It is so appropriate for endometriosis, it is cold, it is between a rock and a hard place. You really cannot move around – endo is actually a rock. When it is advanced it is very difficult it is like bone tissue. I want you to know in gynecology this is the hardest, hardest disease to treat, surgically. We don’t understand many things. But we know better, we know better than thirty years ago – thanks to laparoscopy. Thanks to the guys who were called the gimmick surgeons, thirty years ago, twenty years ago. Because they were gynaecologists. OB guys, maternal/fetal guys who ruled the business. Politics of OB/GYN is run by maternal/fetal guys. I say it without any fear or whatever, but this is the truth. There is a guy named Roy Pitkin, he ran the most prestigious OB/GYN Gray Journal. He ran the opening article was “The Gimmick Guys” the laparoscopists, he called us. Now today we are just still laparoscopists but general surgeons learn laparoscopy – everything is laparoscopy.
Almost 100 years ago Dr. Cullum said, “As you read _____ is the most extensive cancer surgery – endometriosis surgery is more difficult than _____ surgery, _______ cancer surgery. That is why this disease is never looked at as treatable because many of us, the culprit…we doctors are responsible, we are not trained. We do not know how to and we don’t have the chance to train people even. We are still not believed by others, by many. I can tell still from my x-ray even in this hospital. I say things openly.
It is, as my friend Maurice Abrao from Brazil…this is very important, he published an article a couple of years ago. We find endometriosis in the lymph nodes in advanced cases. Exactly like cancer, when it invades. I have a patient that I operated on a week ago, lymph nodes I removed, full of endo. This is not cancer, cancer hits unfortunately after life, this small death, but endo patients suffer silently for years. I personally believe the root of endometriosis is, at this point, we are focusing on stem cells. Stem cells are the source of the period every month. Out of nothing those cells that come from bone marrow sits there and is responsible for developing full thickness endometrium if it appears pregnancy doesn’t happen, the party ends, everybody leaves by the front gate, that from the cervix, that is the period. However, the drunk ones and the sick ones don’t know the door, they go through the fallopian tube. Okay? Over the years this repeats. There is a cemetery of these dead bodies in the peritoneum but they change gradually to peritoneal lining. I’ll come to that.
This is a wonderful lady from Monash University Australia. She is the first originator of this endometrial stem cell theory. I think she is right on the money. She showed it, she showed the cells. These same cells from the endometrium are shown in the peritoneal endometriosis. So it is there. They painted them with special paint. This disease may get a little bit too technical; I am going to go a little bit faster.
The second important person in this theory is Hugh Taylor, our good friend, who we will be honouring this coming year; we honoured Caroline Gargett last year. Hugh Taylor will be honoured this coming year for his stem cell work from Yale University.
This is from a talk that I gave but basically from early lesion to advanced stage the disease right now is, we are looking at the disease as advanced stage neuropathy. This disease always shows is right. In the end the nerves are involved. The pain does not come from nowhere. The nerves are literally invaded with these cells. I am going to show you. A little picture, you will see more of this. Our challenge is that now things are focused on stem cells, early lesions, neuropathy, more conservative surgical treatment that will leave the uterus but go deeper into tissues. We listen to the patients – symptom guided, then we look at the lesions. We have to hear the patient.
Obviously today’s topic is another advance and important, prevention and educating the public of interest that deals with young girls of the importance of the disease so they can be the watch person for us, to recognize these girls early, without rushing to surgery. But timely intervention when the time comes, when that algorithm is met. I will tell you, but essentially the birth control pill may be, for a while, if they break. Obviously some pain medication, obviously diagnosing endometriomas earlier, ruling out congenital diseases that blocks the follow up to periods. We know these. It is all about focus and being a team. We are all one; we all have to sing the song in the same harmony.
So this is one thing that I want you to understand. If you look at these slides this is where most doctors are going to in America, how they treat endometriosis. They ________, what happened here? The guy saw a blackberry lesion and said, “Oh, I got it!” He goes after it, he targets the sniper shot, BANG, bang, bang with an electrical or whatever video game, burns it. What happened? He doesn’t know how deep he burned; he disrupted that mutual peritoneum wall. Look at the surface stretch pulled, like you burn plastic. It just pulls in. You all cook, you know the feeling, right? When it heats up ____, bang. It’s the same thing. Inflammation happens, the peritoneum cooks and starts to ______ the nerve. Simple. Simple. I cannot get these people to understand. This is called surface tension, right?
Lasers, ____, right? Laser hair removal, laser this something that, everything is laser. Laser tummy tucks, laser endometriosis. If you are a laser surgeon you are the best surgeon. What they do, you have a nice light, what did he do? He ablated that – nice, but one thing, he cannot control the depth. He cannot go deep because there is no back stop there. This is the bowel; this is the ureter, alright? He did not remove anything to prove that he really did the job. How does he know it is not cancer? Or atypia? Everybody knows what atypia is? Atypia, between normal and cancer. How do you know that – nothing! Again, major fancy endometriosis doctors do this.
This is what I push. I push excision with some of our other friends in the nation. This is simple scissors, preferably no electricity. Because when you do like that in ovaries and stuff you start cooking eggs. You pass 100 watt electrical current from an ovary I don’t want to be that woman. Seriously, you don’t know what happens to the genes there. Theoretically, it is not good. But here, when you don’t use electricity you can go as deep as it is. The tip of your scissors feels the tissue, if it is hard, you can push and if you are a good surgeon, if you have really committed your life to this, you know how to stitch, you can go through the bowel, you can snip the ureter. It’s fine because that is where the disease is. That is how my patients give consent to me. They allow me to do that. It is so important. Obviously I have like a tertiary practice now; my patients are mostly operated on ten times, five times, six times so they are unlucky. They are very educated. They already know what they need…many of my patients I’m in the bowel and bladder, which is normal for us. But they do exceptionally well. Most of all, when you remove…see the bottom, the tissue does not change color. You know what is left behind. There is also pathology.
This is the deeper version, after it is excised. It’s simple. In other words, obviously the camera should not shake and your hand should not shake. I am right next to the uterine vein…deep, like 1 to 2 cm below the peritoneum – how that scissor action is – with scissors, snip, snip, we just clean things to the most precision we can see. I say precision to the resolution of the human eye and laparoscopy. Obviously microscopic disease stays behind unfortunately. But this gives significant pain relief. Basically these are the nerves around the vessel being taken care of. At the end…the whole pelvic side wall to the depth gets removed. Many times the ovaries are suspended and that suspension stitch is relieved later.
I don’t want to get too technical but anatomically the disease, I will show you, I have great animations for you. But when you look at the cases many times the lesions are spread like a butterfly the middle being thick and deep in the rectum and the vagina but to the sides like that (gestured wide).
One of the biggest problems with endometriosis is the missing endometrioma, so called ovarian cysts, hemorrhagic ovarian cyst, “Oh, it disappeared!” You bet it disappears, it doesn’t disappear, it ruptures and spills all over. Understand? It does hemorrhagic cysts with _______ constantly become a hemorrhagic cyst, watch it, it’s not a hemorrhagic cyst. Hemorrhagic cysts are normal it may happen, once or twice, but if hemorrhagic cysts are constantly happening and it is disappearing, do not trust your doctor, please. There is something being missed.
In this animation you see how the disease brings the rectum like that to the back. This is the cervix…basically the cervix is there but the rectum is below. The disease is right back. This is one of the hardest cases. This is the classic way endometriosis develops but overall I want you to understand these cells slowly go to the vagina, posterior cervix - this area, it invades this, it causes painful sex obviously, and painful periods as always, constipation, painful ovulation. Pain, pain, pain – in different formats. Some woman may not have pain but the other aspects of it. But this is exactly what is happening. This is dangerous. This is why many people do not do this. This is…if you cannot stitch you cannot do endometriosis surgery. You have got to be able to stitch on the camera and stitch fast because you cannot operate for 24 hours.
Many times when the disease is here we are unfortunately in the rectum or just on the surface above the mucosa. It needs to be corrected there, or we cut this off we anastomoses. It is a team issue. It is not a team issue because you have a problem you call a guy, “come and help me”, because you do not know who is going to come. I have luckily in this hospital, Lennox Hill, I have developed good relationships with physicians who did not know anything about it, like Padma said. Padma’s doctor is a good friend of mine who admitted her to one of the neighbouring hospital, let’s not name them, but he felt so bad, this is a man of great…everyone knows him in New York as a good surgeon. He missed something. The reason is that general surgeons think they know everything. They remove the appendix, they think they know everything and they downplay the adhesions. In this you are seeing how these adhesions developed, how this cul-de-sac closes. Repetitive periods coming backwards and backwards, in the end, obviously closing. In my team…let me finish that…one of my general surgeons is one of the most respected general surgeons, a tough guy too, is tougher than me I should say. He had a case where he had missed an endo and he did not believe me. I operated on the patient, I called him to the OR and he graciously came. I removed 13 or 14 spots and he went behind me and went to check every single one of them because he did not agree they were endometriosis. He looked under the microscope, they were endo. Since then he had been my biggest proponent here in this hospital because of him I got OR time. I have a blocked time.
So, the team has to be not just a general surgeon only, the team has to be a urologist who understands the disease, it is not that you call the doctor in. My patients go and see them and say hello. They know who else is involved. Excessive medication issue – they see the pain management doctor. They have to see because my patients, if they do not agree on being on the pain medication, they are not my patient. My patient, four surgeries, if I smell an issue she is willing to talk to my psychotherapist. I need to know up here (gestured to forehead) also. I have a right. I will work on them and we will work together and many of them go and I have a beautiful rapport that comes out of it. I wish I was a psychologist also…the way he reports is like this, he says, “This patient has got issues but I assure you there is no secondary gain issue here”. This is important. It is very important. The patient is one, mind and body, you cannot…you are not fixing a car. And still you are not always successful, twenty percent of the time there is some woman who is not happy.
This is one of my areas of interest because many times the ovary is fixed. The underlying neighbour, anti-ovarian pelvic side wall does not get fixed. What you see is, because of the inflammation, underlying tissue also gets thickened with the disease. This ureter and all the pelvic vessels and nerves here got pressured and pulled. So many times we go, I mean I accept this ureter, the rest of everything comes out here in many of these patients, particularly if it is their fifth surgery, sixth surgery. I do not go here all the time but if they are coming for their fifth surgery, sixth surgery, they know that I am going here and they know that their bladder may have some problems after surgery, which is normal and they get better after that. But most of these patients have leg pain, back pain, they _________, Padma did not tell you everything. Padma, I can tell you, and I do not think she will mind, I do not remember it was not the first visit, in her further visits before the surgery, since she sat down I can probably tell this, she really could not even sit! She could not cross her legs, many of these people cannot cross their legs because there is so much inflammation when they stretch like this, internally, they stretch, the surface tension gets fibrotic, it becomes big, thick scar tissue. It is not only that, obviously the ureter gets blocked. On many of these patients we do an MRI with contrast.
Very quickly…the bottom line is the type of patients I see, for example, 240 cases in a one year period, or one and a half years or two years, I have removed 1500 excisions, most of these patients had previous hysterectomies. They removed the uterus but they left the disease behind. The disease is not in the uterus it is outside, it is not a uterine disease. It is adenomyosis when the uterus is involved, the uterus is involved secondarily, not primary. Primarily the peritoneum is involved.
Look, look at this, it is not over. Thirty two of them had stump, supracervical hysterectomy. Remember that sexy hysterectomy, you leave the cervix behind so the woman can have an orgasm? They tell the woman, “Look, you have to retain…” but it was done for convenience because…you remove the cervix and you leave the disease behind…these are the rush cases. Because most of the time in these cases the ureter is involved. There is one lady who raised her hand, Marilyn do you want to say something? You can say something (question from the audience which is mostly not properly audible) “…I just wanted to say thank you.” Thank you Marilyn. I apologize, it is spontaneous, but it is important to hear people. Please believe me, I did not invite…they knew this was coming. This is not the “Seckin” show, I want to be honest about that…these are real stories.
Coming back to this, it is not a reproductive organ disease. It is as much, if you look at these slides, as much as it was out of 1400 cases the disease on the cul-de-sac and sidewall. This is like 12…two out of three of the persons who have the disease it does not involve the reproductive…it involves the rectal, pelvic sidewall and rectal peritoneum, so it more of a non-reproductive organ disease in a way, because of symptomatology. Many of these women have vague gassiness, discomfort. It is not only killer cramps but it is accompanied by something big that reflects the peritoneum and they cannot pinpoint where the pain is coming from because it is a peritoneal pain, it is a no susceptive pain.
As I was telling you it is important to listen to the patient. It is not a uterine disease only. The pain is felt in the brain, inflammation here, not locally distructs the tissues. It is the chemicals of the inflammation. It is the key 9s, right? Not only these muscles, these chemicals affect the brain directly as much as it comes from the spinal cord. The doctor has to have a very good history. The patient really tells you she has endometriosis. Period! I can tell from three, four, five minutes into the questioning whether she has endometriosis or not, many times, over 90 percent. The history that she tells you has everything.
Back to stem cells, we are, ladies and gentleman, we are truly moving into a brave new world era that was described 60 years ago. Remember the book? We are there, incredible things are happening in the world. Unfortunately our country does not respect stem cell research much, but they will, it is happening. Let me tell you, this woman, she is from Minnesota…actually there is first stem cell related organ transplant done for the trachea. They have removed the tracheal tuberculosis of the infected person - decellularized it – take the cells out, recellularized it with normal cells, put it back. The patient lived. This woman from Minnesota, they started doing this on the heart, a pig heart. A sick heart, they drained the cells and they infused it with stem cells and they were able to do a beating heart. This is so important. This is…something is happening. These are rat cells, decellularized, recellularized (showing on slide) – recellularization. The same concept is holding true with endometriosis. The stem cells we know, even in hysterectomy…one quick, you will all understand this. The lady has leukemia, she goes for total body radiation and chemotherapy, loses completely her uterine functions. She is given bone marrow cells, donor transplantation and from bone marrow transplanted cells, she starts having her periods. They say, how did this happen? They got a sample from her endometrium and they can stain these cells. When they stained the cells it is the stem cells of the donor lady. This says this changes the whole game. That’s it! It has been verified, repeated by others, and it does not have to be from a female, it can be from male stem cells too. Stem cells somehow know where they are. They know that they are here in this crowd, they are sitting ghostly somewhere, they know what this crowd is about. BANG! They read my face they copy me, sits there and tells us what to do. We become their dominions. That kind of action, exactly. There is one stem cell per 200 cells. This has been measured. It is very difficult. It is like the queen bee, probably a similar mentality.
This is an animation I made. This is my way of thinking, this is my theory in a way. These cells that have been pushed to the peritoneal cavity, remember, from the back door? They were drunk, they fell down and they die and then they change the peritoneal surface. In a way, what they do is they die but their molecular information creates a setting under the peritoneum that brings the vessels up. The vessels get all spiked and ready to accept something, like the endometrium going to accept a pregnancy, alright? At one time when the cellular debris got trapped here, there was an SOS for oxygen; this is called the oxidative stress. At one point these cells meet.
