My name is Tamer Seckin. I have been practicing gynecology and advanced laparoscopic surgery exclusively for endometriosis and fibroids for the last 20 years in New York City. I am affiliated with Lenox Hill Hospital, and my office is located very close to the hospital in Upper East Side.
When did you first become aware of and begin to treat deep Endometriosis?
I had the pleasure of working with Dr. Harry Reich who has been known to be the pioneer in endometriosis surgery as well as laparoscopic hysterectomy. With Harry, I have discovered the technique of performing deep endometriosis surgery in rectovaginal septum and anterior rectum. These are the part of endometriosis that many doctors usually miss and many do not have the opportunity to see this part of the body be operated on, and most of the relief that the patient gets is this area when it is excised and deeply cleaned.
There are approximately diagnosed pathologically close to six million women in United States with endometriosis. I like to say endometriosis has a component of silent epidemic. There are probably another two to three million women on top of it, not ever diagnosed. These women are either missed through their infertility complaints and problems or they do not have symptoms or their symptoms are being overlooked as other diseases. It may be more but certainly the number is not only 6 but it is above that. That is why I called endometriosis a silent epidemic.
What are the most prominent physical symptoms of Endometriosis, and how do these affect women physically and emotionally?
The symptoms of endometriosis and its associated difficulties attached to it comes in a very, very long time. Mostly, it starts with the first ever period a young woman or young kid may have, that is pain. Painful period is the most prominent symptom of endometriosis. The emotional and the personality that develops around this is the way the woman is shaped about her attitude towards this disease. The care that she gets, the trust that she has with her mother understanding it, her teacher, the nurse, and the way she is treated with this pain becomes the core factor how that woman turns out to be in the next maybe five or six years, what becomes of that woman. It is important to note that early diagnosing disease is the single most important part to get a good treatment, best treatment result on the disease. May I say that early diagnosis and early detection is the best prevention of endometriosis because if we diagnose young woman early and if we can treat their pain early, the long-term effect of endometriosis will be minimized. What are they: Endometriosis is the number one reason for fertility problems. If we can put in number probably more than half of fertility problems that a woman may have, has to do with endometriosis. Besides the pain, probably most common ailment the woman gets is monthly gastrointestinal symptomatologies which are bloating, which are again gassy feeling, which are other referred pain, or change in bowel symptomatology. That is why most of these patients end up with gastroenterologist in emergency rooms with unnecessary appendectomies. By the time, they are diagnosed there is more than 10 years on the average in United States for endometriosis patient being diagnosed from the time of their symptoms until the first excisional biopsy or visualization of the endometriosis is made. Apart from that, it is important to note these women over years get so much used to pain medications and the level of pain medication may get them into a state of almost dependency.
Sometimes, we see that even though you remove the disease, the scar that has been built in mind is difficult to be eradicated and long-term therapy is needed on these patients.
What are the most common reasons for late diagnosis in women of Endometriosis?
What makes endometriosis diagnosis be so late in United States or other parts of the world is, there is a taboo factor that is involved with respective periods and associated symptoms around periods. Every society and in our society, the period and its associated symptoms with it are looked upon as normal. Usually it is said when you grow up and get married, have kids, it is going to be over. Your mother had it too, take two aspirin. For a woman it is not easy to bring this up every time she suffers or it gets worse. They accept it at earlier age and they think it is their destiny. They are accepting to live with the pain. Over the years even though it gets worse, they bury it, they hide it.
Do women of different socio-economic backgrounds have special obstacles when seeking diagnosis and treatment for Endometriosis?
When we say endometriosis is the one of the most misdiagnosed, mismanaged, and mistreated disease, I must say that the socio economical factors have something to do with it. Here is why and how. If you are coming from low socioeconomic group, it is easy to be treated and to be diagnosed your ailment as pelvic inflammatory disease. If you have the privilege to go to private doctors, then the diagnosis all of a sudden becomes irritable bowel syndrome that involves multispecialty testing. In both ways, the diagnosis is wrong and it is degrading for the first group of people to have a PID. They are put to shame. In fact, they do not have PID. The second group develops mistrust of the whole medical community. So we develop one group of woman with endometriosis from a different origin which both of them commonly share as mistrust to the whole medical establishment. The resentment that develops against this really formats these women's personality. I sometimes call this type E personality, component of type E personality because people with endometriosis have special personality, I think. Besides this these women are sometimes high achievers in city crowd. They can bury and hide their pain to the point when they cannot stand anymore. They have passed the age of 30 and 35. When you look at their inside, their endometriosis are so advanced that the only treatment they may have is, they may require removing massively involving disease containing and attacking their tubes and reproductive functions.
What is a "Type E Personality"?
Well, I have come to convince myself there is a type-E endometriosis personality. Here is why. I have been treating women in New York City from all origins. They are high achievers, PhDs and lawyers. They would not accept any sign of pain on their faces. They will not show it to you. They will hit the road at 6 o'clock in the morning, grab their coffee, they are at work working all day and the next day again the same thing. These women can suffer but they cannot show their pain. For years, they lived the same thing over and over every month. However one day, they close the door, and they sit in front of you and say I cannot take it anymore. I need something to be done. I am going to this and this. I have been going to this doctor, that doctor, I have been taking this medicine, that medicine, I have been on birth control pills, I have been on everything, exercise, acupuncture, diet and what do I have. Guess what, you have endometriosis. You have endometriosis that can be treated, that could have been treated years ago probably better, and still can be treated. Curability, there is no guarantee; however, with good surgery, there are very good results with treatments.
That is why I say these type-E personalities then becomes a different person after surgery. Some of them get pregnant, most of them get pregnant with good surgery and 90% of the time their pains are less. About that group, 50% of them almost experience very little pain. If their pain comes back, they accept it is endometriosis. They understand they will be having some adhesions, some maybe one out of five will get more, can go back to surgery later in the years ahead of their first laparoscopy, but overall you have a patient who is communicating with you, who is understanding, who is assisting you in their treatment. I think this is a big plus, when you have a patient participating to their care, knowing they are diagnosed and they are helping also, willing to help others. I have been developing this group of pockets particularly in New Your City. They have been friends; they have been patients, and also advocates of early diagnosis. They are willing to speak, they are willing to go and educate others too.
How are women currently being mistreated for Endometriosis?
Let's start with basic technique of treating small endometriosis. Simple endometriosis. There is a tendency of burning these lesions. Doctor sees it, looks at it through simple laparoscopy, he burns it. It is the simplest way to do it. It is the easiest way yet the worst way to treat the disease. Why is it worst? Why is burning very bad? What burning does is, basically you accelerate the pathology of endometriosis that really makes pain by burning. How do you do that? How does doctor with the wrong technique can contribute to the lesion become more painful? Because endometriosis actually causes pain due to scarring. Scarring pulls the tissue. It increases smooth lining of the peritoneal cavity in which the bowels swim. It makes it hard and thick. That is what scarring does. When you burn it, you make it more tense, more scarred. When you burn it, you also do not see, what has been underneath that. So basically you bury that. I have learnt through years of experience, these are the most difficult cases you may be challenged when you deal with previously burnt patients. So burning is not right.
Secondly, the endometriosis that is involving the ovary. Controversy is these endometriomas are potentially one of the worst endometriosis formats because endometrioma is like a second menstrual cavity. In other words, when women have periods, one period comes from regular uterus and flows through the vagina that is what they see. The other period, if you have endometrioma, is the period that occurs inside, it flows inside the peritoneal cavity. That blood never comes out. It accumulates and the ovary swells. Some doctors, unfortunately, this is so important, they just drain this, maybe remove a little part of the ovary, and they burn around the ovary. I think this is also unacceptable treatment. One needs to strip the capsule of this cavity endometrioma and probably reconstruct and maybe suspend the ovary, so ovary does not fall into the same hole and get stuck and cause pain and also reconstruct it so it does not have any adhesions of bowel coming there.
And thirdly, let me address about hysterectomy. Many women who undergo hysterectomy are with endometriosis, or are having hysterectomy for unnecessary reasons, because there are 600,000 hysterectomies done may be probably more in the United States right now. This number has not really changed. One third of this done is for endometriosis and/or pelvic pain.
What happens with hysterectomy is if there is adenomyosis, if the endometriosis is involving the uterus, I think it is a very indicative procedure. There is nothing else to be done for those women, if adenomyosis is attacking the whole uterus. However, if there is cul-de-sac disease, giving these women hysterectomy will not help at all to their pain. They will come back for painful intercourse or other sorts of pain in their pelvis. One has to treat the deep cul-de-sac disease with deep resection and wide excision of the anterior rectum and rectovaginal symptom. This is the surgery that belongs really to masters, to very experienced skillful surgeons and it is the technique that also needs to be taught to residents, to other doctors.
What is Endometriosis?
One of the most common questions patient ask when they come to the office, is what is endometriosis or anywhere else, it does not have to be in the office. I think the best way I found that explains the whole pathology of endometriosis is, I say, endometriosis is the period that never comes out. The period that comes out is gone but the periods that never comes out and accumulates inside is the endometriosis. It is healed and covered by the body with scarring but there is something special about this scarring which medical community knows as adhesions. These scarring are because it is in the pelvis and the woman is always on foot running around. It accumulates in the deep pelvic area every month; obviously, when there is back bleeding or it comes from endometrioma rupture. The body automatically starts to cover these bleeding areas. So when the doctor looks by a scope, they cannot see this. It is easily covered. So in experience and obviously when we say deep endometriosis, is the endometriosis that is buried in the cul-de-sac. With special techniques, we can make it visible or at least be felt during surgery to have them removed appropriately.
Over the years, among very many patients that I have treated, some have really volunteered to be a part of what I am doing but they were not physicians. However, their social stature was so effective and influential, they could probably I thought would make more of a messenger. Of what I am doing as a doctor for individual patients, they could be doing the same thing for the masses, the masses of women from 15 to 45 that cannot find a window of opportunity to express themselves or be understood. I said if I am doing 200 surgeries a year, at one point I am going to stop doing this, and I could only help so many. However, if I can do a charity, a foundation that is uniquely focusing on education and awareness, education not only patients but education of doctors for treating these women rightly with good techniques from the experienced people that I have learnt, then I am willing to teach others. This is why I have initiated endometriosis foundation and one of my good friends who I was involved also in treating, Padma Lakshmi, she has wonderfully extended her hand to this cause. I am grateful to her and she took along carrying the message to her friends obviously, and we are coming up with some awareness very soon in the later part of April in New York City. I would like all the women who are hearing this message focus and click on that. I am sure there will be more to come on this issue later.
What is the most effective treatment for Endometriosis?
As a conclusion, let me say that, early detection and early diagnosis by timely intervention is the best prevention of endometriosis and its affected disease.
Let me tell you how. These women will have healthy menstrual life, they will have children, they will have less pain, and they will be trusting their doctors. They will not have unnecessary hysterectomies, they will not have unnecessary appendectomies, and they will not be bouncing around from emergency room to many specialties without getting any result. The goal of treatment is excision surgery and is the standard. It should be taught to the masses of young generation of practicing gynecologists and surgeons.
I appreciate the time and opportunity to introduce myself and give you my experience on solving this disease. I would be happy to involve myself to work with endometriosis zone to assist women who needs help online, to answer their questions, and guide them through right channels.
Endometriosis: Early diagnosis and intervention is the best prevention.