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Meet the Doctor who has spent his life fighting to help the 1 in 10 suffering from endometriosis

Meet the Doctor who has spent his life fighting to help the 1 in 10 suffering from endometriosis

Diana Falzone:

Dr.Seckin, your name is known for being one of the top endo excision surgeons in the world, but many people don't know how you became that, what your backstory was, why you became so passionate about endometriosis. Can you take me to Dr.Seckin, who was in medical school, and realized that there was something that he needed to explore further about endometriosis?

Dr. Seckin:

You're asking me the toughest question. First of all, thank you for having me. I always believed that the platform should be visual and platform should be interactive. Visual like this, so patients can benefit and the public can benefit, because if we doctors speak, we speak firsthand. We witness this patient's life and their life course very closely and we can really testify for that. I get this question all the time, I don't know how to answer it correctly. I feel like if I speak to my shrink or... I don't have a shrink yet, but even the psychologist, says it must have a deeper value to why I got into it. Certainly, I took the very less traveled path among many OB-GYNs. I mean, if you think of the training of OB-GYNs, 90% of the OB-GYN's residency program after medical school, goes into training in obstetrics, not necessarily in advancing gynecology surgery.

Endometriosis is a gynecological problem, obviously. Why I went into endo, must have something to do with my prior medical school exposure in life, probably, for certain things. But in general, I always want to be a doctor, aside from at times I want to be an architect. But in middle school, actually, that was the first time the heart transplant was performed in South Africa by Dr. Barnard. I know that as a 12-year-old kid, I followed that very well. I made a paper on that by reading Newsweek and Time magazine articles, I made a paper. It was very fascinating. Medicine is very fascinating still, we see today.

As you know we did Connecting Patients With Science, we did that program this year. I emphasize the importance of science for patients because we've witnessed firsthand in a matter of eight months, the world was able to develop a vaccine for COVID. We know that that vaccine was developed by two immigrants in Germany, which is right now, Pfizer vaccine is the most effective one. It is the utmost element of a molecule that they were already trying to do for cancer care patients, a vaccine. They immediately shift it to this.

I see so much similarity in endometriosis and science and the way we're going right now with stem cells, the same analogy is there. We see that the future is with science. I was a science guy and always, but I wasn't the... I like surgery. In my program, like surgery, but the most important thing is in my training in the early 1980s, after I finished medical school, the biggest diagnosis in women was chlamydia, gonorrhea, and pelvic infection disease like adhesion. Every woman who has pelvic pain had PID. This continued all the way into the late 1990s for 15 years. PID, gonorrhea, GC, chlamydia cultures, every woman who came to the emergency room for pelvic pain were treated with antibiotics by default, whether the cultures are negative or positive.

Diana Falzone:

That's not happening.

Dr. Seckin:

Then there came the herpes wave, herpes, chlamydia. Those were the days of PID, a sexually transmitted disease. These women for almost two decades were treated with this.

Misdiagnosis though, right?

Misdiagnosis. In fact, at that time, laparoscopy was becoming very popular to look inside for, again, fertility purposes, but we started seeing something else. I caught that wave and we figured out later, and I also figure it out. I was in that group of people. These people did not have PID, they had endometriosis. As we biopsy this, there was something else coming on. Then we saw, this is the same endometriosis that Dr. Samson found out hundred years ago, but at that time hundred years ago this was defined as a big... When patients have big ovarian cysts, deep endo, or advanced endo, we call what we call it, it's as bad as cancer. But then when you diagnose in earlier phases, you saw small seedlings in young girls, which were presumed to have PID. In fact, they didn't, which came back as endometriosis.

In other words, we learned this from patients. The patient taught us because we were wrong, and then we learned that by looking, we were taught it wasn't endo and we learned that. I think I caught that call from finding and pursuing the fact and the truth about what was causing the real problem. I have to tell you, I never forget patients that I have not able to diagnose, and then I went back and I diagnosed certain things because their symptoms persisted and they got better. With these, obviously, you're encouraged to do more. The problem with this situation is because endometriosis is an extrauterine disease, and it sees on different organs, you have to have a very confident surgical background to deal with this. Otherwise, many gynecologists are not trained to take endo from other organs. I was lucky to be trained as a general surgery resident also in my training background. I did very long years of training, so that gave me a lot of confidence in pelvic surgery. The pelvis was an area in my body I was very excited and very curious in a sense that's so complex.

It wasn't about the cancerous pelvis, but anatomically there are so many organs, so many nerves. It's an area where it feeds a new life and it can go nine months. Then there's a baby that comes out and where other organs are intimately close to each other, bowel, bladder, all the nerves, blood vessels. In that case, the pelvis was a very challenging area. In a way you can say, I followed the call where there was a real challenge. I took that very tough road and I never looked back. I mean, I have to tell you I'm grateful that I picked this path because I know that I am in this battle with women that I am part of that. If I can help... I know I'm helping, it's a great feeling to be able to be part of their healing.

Diana Falzone:

You're helping.

Dr. Seckin:

I feel I'm part of that healing with them, whether the results are excellent or not excellent.

Diana Falzone:

Well, you are a part of it. Do you remember your first endo excision surgery, your first patient, what that was like?

Dr. Seckin:

See, I actually remember. My first endo patient was when I was in medical school at around 22, 23 years old. I was an extern... I mean, in other words, I was an intern. I'm sorry. I do remember, we removed an endometrioma. At that time, they removed the ovaries, and the ovary was removed for ovarian cyst endometrioma. I remember the face, even the face of the patient.

Diana Falzone:

Wow. Now you've come so far and there's been so much awareness because of voices like yours because you co-created the Endo Foundation of America. Maybe you knew this the whole time, but when did you realize that people that were born with the uterus, their voices were not being heard. Some doctors, I should say, were not taking them seriously. That they thought their symptoms were IBS or even hysteria, stress-induced, whatever it could have been, but everything, but what was really going on with endo? When did you say to yourself, "Okay, I have to elevate this cause."?

Dr. Seckin:

Well, two things. I knew for sure coming from a public health-conscious background, early diagnosis and detection is the key for a lot of diseases to be cured or to halt their progression. All right? I don't forget in my practical years as a surgeon, I have seen... Again, you asked me, "Do I remember?" This patient particularly is important, what I did for the foundation. I saw so many patients with repetitive surgeries coming for pelvic pain. They look around, they can't find, yet they have endo and you find it and then their life changed. This was a Danish diplomat in New York, which was operated multiple times in Europe. After I found some endo in her area that she finally got symptom-free and have babies and stuff. That result encouraged me that that was not the... Certain things have to be methodically brought to the public eye and systematically reinforced as far as awareness and study with research.

The testimonials from patients, patients' voices should be broad. I thought the woman voices, inner pain was not being brought up. It was 2006, actually. 2006, with my 10 patients who are all endo patients, or 12 patients, we got together and said, we're getting a foundation going. Parma joined us later, as you know, but it's a piece of public knowledge. I have to say, I did encourage her. Initially, she wasn't very sure. Then she said, "Hell with it. You're right. We have to do this." Parma comes from different backgrounds. Her mother's a nurse. She's very self-conscious about public health aside from what she does as a model. If she goes said, "This is my biological life, it's separate. I can talk about it." I think we always talk about it, but her coming out, I think made a significant difference. There's no doubt about it.

I mean, immediately there was a Newsweek article, Wall Street Journal article. How could she be talking about this type of rhetoric was out there? Nobody knew about endo. It was like Betty Ford coming in the early 1980s, or around that '85 or so, "I had breast cancer." Everybody said, "What's she talking about?" Guess what? Now at that time five-year survival of breast cancer was not more than 15% or so. Right now five-year survival from breast cancer due to early diagnosis, more than 90%, more than... Almost all of the lives very well. It's all about early diagnosis. We thought that Diana if we diagnose endometriosis early if we create awareness endometriosis diagnosed early in the 20s, not later than 25, the disease will not jump from one stage to another. Even earlier endometriomas or advanced disease that pops out in younger groups, if it's treated well, those women may not end with hysterectomy or multiple surgeries and so forth.

There is a high value in diagnosing and detecting the disease. I think that's why our foundation is so important that giving that awareness message throughout the world. After us, so many groups have been formed on the internet, around the world. Lots many universities open their endometriosis divisions, endometriosis clinics. There were none. It all happened last decade after us.

Diana Falzone:

Yes. I've been seeing two in the last five years. There's definitely been more prominence. Now, when you say to someone, "Do you know what endometriosis is?" Usually, they'll say, "Yeah. I've heard that." Where I feel 10 years ago, there was not that same recognition. There's definitely progress. The work is being shown because people know what the disease is now. That was something that was not around 10 years ago. Endometriosis though is one of the perplexing illnesses. There's not a cure yet. There's limited treatment. What is your frustration as a surgeon with the disease? I'm sure there are multiple, but what is one that just frustrates you?

Dr. Seckin:

Let me clarify this. I think when we say there's no cure, I think it's not fair to say there's no cure. I think we should first say the endometriosis is a highly treatable disease. There is no cure for pelvic pain. There is no cure for unknown reasons for infertility, but I think endometriosis can be removed with good surgery. Removing endometriosis may not treat the real cause of pelvic pain, all those things, and disease may come back, but more... I think the cure word is dangerous, is a desperado word. I think we should have high hopes that disease can be treated and cure words is a cancer word. Cure words are five-year survival. If you're free from cancer for five years, that means cure. I don't like to use the word cure, but I like to use highly treatable disease, but you're right. Endo ends up in some women with multiple surgeries and multiple reasons to have a hopeless and negative course in life. You're right. Repeat that question.

Diana Falzone:

In terms of all of your years and your expertise and your success rates, where you've had patients who say, "My quality of life is vastly improved." But what's a frustration for you as a surgeon with patients? What have you heard that you just say, "I wish I could make that better for them, but I don't know-how," or, "I wish there was more advancement and research." Is there anything for you as a physician that's just frustrating about the disease?

Dr. Seckin:

I think the most challenging aspect of endometriosis is giving enough time to create a good base of knowledge and trust element with the patient. It's the veracity, truthfulness, trust, and being clear of who you are too patient. That trust doesn't develop with one visit. Endo patients should... It's not easy to get a patient to the surgery very quickly. That's that time should not be rushed. I wish I have more time for that. Unfortunately, many of my patients come to me having multiple procedures prior, and they read about our experience with other patients. I don't have to tell them what I'm going to do. They already know what I'm going to do because my methods are very systematic. I don't change it. I mean, I do ABCD, that doing that gets me better results.

The idea is when you do surgery, you remove to the point of you don't leave any disease behind. The patient has to know that you did that, and you have to give the evidence to the patient as video or pictures, pathology report. Every tissue has to be examined under the microscope. Those types of elements and care give the patient validation, give confidence, and gives them the right to say, "I was right to have all the problems. Here is the proof, the doctor removed it. It's verified. The evidence is on the pathology report. It's verified there." Then they feel so confident, they move on. If you don't develop that, the results could be very mixed with endometriosis.

The second thing I really regret... Well, this I tried to do in my practice. I wish it could be done more... This could be brought to a wider practice for everyone. The second thing that is very challenging is the element of the pain element. Pain is the single most cardinal component of endometriosis. Unfortunately, if the patients are initially derailed from the course of accurate diagnosis, pushed into the way of GI doctors or gynecologists who don't have the experience on this and go after symptoms without realizing how this could be connected to periods, the patients get multiple procedures and they lose distrust to the system, to any physician. Then because it's paid, they end up with paying specialists. Once they do, they start with a small dose of painkillers. It jumps up to narcotic level. It jumps up to higher doses. These patients get unfortunately dependent on Medicaid. It's very, very difficult, even though they have endo to get good results immediately with these patients.

You really have to work on this. I regret this very, very... This is the main challenge that I face right now because it has gotten out of control. Patients without any diagnosis get every sort of heavy dose of narcotics or... I mean, if these come and surprised her as it goes to rectally or vaginally to volumes and you name it. From vaginal botox, it doesn't really stop, and without any diagnosis. IBS is the biggest... I say IBS is BS if it's endometriosis. If you say IBS, yes, treat it, manage it, but if it doesn't work and the symptoms are coinciding with periods, if you have IBS then could they kill their cramps. If you have IBS or painful intercourse, hey, wake up. It's not IBS. IBS is is a syndrome.

That means that you have bowel problems, but we don't know what. That what IBS is. It is endo, consider endo if you have other symptoms with... If your IBS flares up with periods, consider endo. If I had the opportunity, these issues of frustrations are basically patients coming late with multiple procedures, with burning, with ablation, or sexy process with a robot. You do this advance this, advance that, patients don't understand. The bottom line the disease has to be widely resected, excise, deeply removed, so fresh tissue can repair itself without endo. If you leave endo that tissue stays as inflammatory tissue, among many things. These are maybe technical, but in general, I wish the fertility world respects endo as much as we care about their pain issues.

Fertility world, for them endo is only when they see on a sonogram, the endometrioma because they have to suck an egg there and endometrioma stays on there. That's the only endo they know. They know they don't really diagnose any deep endo with bowels or peritoneal endo where patients suffer so much because it's not about getting pregnant business. Obviously, there's also silent endo. In other words, they may be even symptomatic, but they have normalized their pain culturally, or for whatever the reason or whatever work they do, they bite their tongues and move along. Society has not come up with issues that women should not really have pain with their periods. Really should not as much, one day maybe. Anything beyond that is not normal, but society historically to the roots of our biblical origins' women are supposed to have pain and they're punished with it and it is good. That's the way God created it.

The same thing goes on right now. I mean-

Diana Falzone:

We are not-

Dr. Seckin:

-we can go deep on that. I mean, we're living in a world still. We have in certain parts of the world, there are menstrual huts. I mean, if you're having a period, you got to go to that hut-

Diana Falzone:

Some women-

Dr. Seckin:

And be there until your period is over. Every year we hear somewhere from India or Nepal, one young girl gets burned there due to it's very cold, tries to set up a fire and unfortunately could not get out and that becomes a piece of TV news. It happens every December, you hear it.

Diana Falzone:

Then here we are in 2021 in the United States where women are... Anyone born with a uterus, they are told that they have all the same rights, but when it comes to diseases like endometriosis, we're still not getting the money as easily as other things. There's still a stigma about talking about your period. These things are getting broken down because of work that you are doing, work that the foundation is doing, work that we're trying to do here at EndoTV to normalize a conversation that a woman's menstrual cycle is not something that we cannot discuss. It should not be stigmatized. That it is a natural course of life. If something isn't right, it's okay to express that and get help from the right physicians, from the right experts. Like you said, early intervention.

I look back, I got my period when I was 11 years old, I had terrible periods. I had an ovarian cyst that kept bursting and I was in terrible pain vomiting and no one mentioned endo to me. Years later, I'm 33, turning 33, and in the hospital, no one's telling me what's wrong. No one mentioned endo. It took me forever to get the diagnosis. I had a more advanced disease because from 11 to 33 is a very long time. I'm hopeful for the future generation of women, girls, individuals, born with the uterus that they won't have to wait so long that, as you said Dr. Secklin, they can get that early diagnosis and the proper early intervention so that they don't become advanced. And they can, like you said, get it highly... It's highly treatable at that point.

Dr. Seckin:

Well, this is the... I mean, I like to give you a call about... I mean, as a man, I get goosebumps when I say this because it's a very important aspect of voicing. No one understands, except those of us who have the disease. These are the words of a Canadian sociologist, which she apparently... I don't know her personally, but I read her articles. It's a great way of saying only women can understand endometriosis, number one, but that shouldn't give the right not to unite. In other words, as a man, I feel like, yes, I don't have a period, but on the other hand, I have spoken to thousands of women about this disease. I've seen their insights. What can unite is science. I think I regret endo community is divided.

Diana Falzone:

Same.

Dr. Seckin:

You're talking about, if I say, for example, endometriosis-associated with menstruation or retrograde bleeding or something like that, they would pick this and try to put me down because I said that. Where it is, what kind of doctor is this? That kind of stuff, just the opposite. I see it because you cannot be flat earthers. There is science behind it. The science is endo is associated with menstruation. Does menstruation cause endo? We don't know that. However, it triggers it. It has genetic material like seeds, it provokes the disease that is in the genetics of the woman that can develop it, whatever the route.

I personally think science should be the key to unite us. We have to be one voice and I'm sure that's going to happen. The only way to do this is public health, seeing this as a public health issue. It's a public health issue, but it involves women because it was women's reproductive rights. It involves women's productivity as a mother, as a single woman, as a career woman, as a scientist, as a journalist, as a professional, as a partner. They deserve to be on equal grounds in today's modern world where men are not soldiers anymore, we all work for the good of the public. I think for public health, this is an important issue vertically, not one layer. It's not a pandemic. It involves 30 years of reproductive life, every element of it, and everybody is involved with it. Unfortunately in public health, these are not easily recognizable unless monetary losses are brought to the table. Yes, there are monetary losses. With today's mathematics, we can really... These things I'm sure will be written, that's why research is important.

In our foundation, we stress the value of research. I hope we could give some money to these issues by economists, by sociologists, who can really write these, bring it to the attention of public health scholars so that we produce government can spend time, spend more money on research dealing with this, bringing these issues up, so it becomes important. I really think there's more to be done. We're really coming to an age that we will get down to the business of endo being not only surgery but other ways, non-surgically, this disease will be treated. Also, not by a pharmaceutical expensive drug that basically numbs the whole femininity of being a woman. I mean, basically shutting off your hormones completely and turning you into a hormonal creature is not the way to treat endo. I mean, that's really... It's not that what Lupron does, that Orilissa does. At least birth control pills are more benign. It does give an excellent result many times.

Diana Falzone:

Well, thank you Dr. Secklin for joining us today. This is the beginning of many episodes that we're going to have you on to discuss a variety of topics regarding endometriosis. I just wanted to say personally, thank you for what you've done to pioneer this field to help so many who are suffering. It's because of the Endo Foundation and your name that I was able to even know about endometriosis when I was at a loss. It's personal.

Dr. Seckin:

Thank you for having me.

Diana Falzone:

Thank you, Dr. Seckin.

It's a pleasure.

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