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Endometriosis: Why Women are Dismissed and What They Should Do | Dr. Tamer Seckin

Dr. Tamer Seckin is a world-renowned endometriosis surgeon and founder of the Endometriosis Foundation of America. He is the author of The Doctor Will See you Now: Recognizing and Treating Endometriosis. In this powerful interview, he describes his journey into this calling and the realities he encounters about how women with endometriosis suffer. . . and what can and should be done about it.

Georgie Kovacs: tell us about your background.

Dr. Seckin: I’m an OB GYN and a gynecological surgeon. I’ve been professionally in practice almost 35 years. I’m in private practice and faculty at Zucker School of Medicine. I’m an associate professor in OB GYN. My focus is exclusively endometriosis. More than 25 years, I’ve been exclusively focused on this area. It has been a passion, obsession, addiction to this disease due to its challenge and complexity. It called and invited me to battle it, along with my patients. Gradually, women gain the ability to win more battles. I felt strongly that I could serve women well this way. There’s no cookbook recipe for the outcome of an endometriosis patient. Every patient is different and the disease is separately different. As a surgeon, I do the best I can.

Georgie: I must disclose why I wanted to interview Dr. Seckin. For three years, I had been told that I had unexplained fertility. The late Dr. Braverman did tests and said that I may have silent endometriosis. He said that the only way to actually know if I have this is to have the laparoscopic surgery and said I must go to Dr. Seckin. You performed the surgery and after many many years of not even a chemical pregnancy, I got pregnant the first IVF after.

I also went to the Endometriosis Foundation of America Conference in 2019. The doctors that you brought together at that conference were amazing. The specialists talked and the patients learned. It became clear that there are only a handful of experts in the world, many of whom are self-taught. Because this is such a complex disease, I thought this conversation would be helpful.

Let’s start with the basics. For those who are still getting to know endometriosis. Maybe you can briefly describe the disease.

Dr. Seckin: as you know, I thought there was a need to educate people and inform the perception of endometriosis, particularly among so-called experts. In my first foundation meeting in 2009, I named the meeting “from stem cell to excision surgery.” That was it, really. Nobody talked about stem cell and endometriosis at that moment. Nobody talked about excision surgery much either. I took two of the most sophisticated, sharp aspects of endometriosis together. I contacted Caroline Gargett from Monash University. She helped us develop this message in the airwaves about endometriosis.

Endometriosis itself is an inflammation that is driven by estrogen sensitivity of the cells. If these cells happen to be the cells of the endometrium that cause monthly periods, located outside the uterus, each month these cells are stimulated. That monthly stimulation causes many micro-periods, so called, within the body that don’t escape. That micro-period or mini-period eventually causes inflammation, because the body wants to kick them out or eat them up but doesn’t have enough power to do so. It starts shooting them with inflammatory chemicals. That causes collagen, fibrosis and more development of tissues. Every time there’s fibrosis there is nerve tissue around and new blood vessel formation. These nerves get trapped and even a little lesion becomes a huge source of pain.

Years later, people started talking about endometriosis as inflammation. The traditional definition of endometriosis is simple but it is not enough. Without inflammation, you’re just indicating that cells are outside the uterus. It is the inflammation that needs to be excised, along with the glands, that results in ultimate treatment.

I am obsessed with this. I always lean back to my internship years. I did work a lot at burn units. I have a general surgical background. I was exposed to every different aspect of medicine. But the most impactful was working in burn units. Burns are the ultimate example of how the body responds to inflammation and how wounds get healed. If they aren’t treated by excision and deep cleaning, there is nothing in the world more painful. Massive burn patients will usually die. I saw how powerful and painful this was.

I understand, to a degree, the pain women with inflammatory conditions experience. The empathy has deep roots in my upbringing.

This is an important understanding. Even if we don't know how the disease starts, we can recognize the tissues with problems and get rid of it. It’s not pigmented black lesions or cherry colored lesions. Many of the endo lesions are not those colors, they are white. Under bright light, they are not easily detectable. These nuances simply mean there is more to this disease than you see and there are genuine reasons that endometriosis patients don’t get treated adequately.

Endometriosis is estrogen sensitive inflammation that’s characterized by painful, heavy periods and GI symptoms and painful sex. Those three cardinal symptoms are the result of the inflammatory situation that occurs in the pelvis.

Georgie: I love how you explained that it isn’t just the cells growing outside of the uterus. It isn’t discussed very much and, if it is, it’s not giving the context in the way that you explained. I didn’t know your background about the burn unit. Usually, doctors who are the “last line of defense” (who you go to when no one can help), have some kind of history like that to fuel their passion.

Dr. Seckin: I’m also a big promoter of women’s rights, politically. In my medical school and residency program, I saw a lot of young girls (in the late 1970s) facing abortion issues. Many young women were brought in for septic abortions, which had been illegally done in remote areas. They were subject to inexperienced gynecology and most of them died. As a young physician, I couldn’t believe how people would die at that young age for that reason. The social impact of being a woman and these early deaths they faced had a great influence on me to go into OB GYN and then advocate for women’s rights.

In the early days, if women came into the hospital with pelvic pain, they would just be treated for STDs. It was a highly shame-producing practice with no basis in reality. As I look back on my history, I see the themes of these things that motivated me into my specialty.

In my practice, later, I found out that these women who had pelvic pain had other issues. I always believed what a patient said. I started practicing in Park Slope in 1985. I was influenced by how smart these women were. When they said they were in pain, I believed them. Later, when we had laparoscopy, we could look inside and see endo. We realized that what I had been taught was untrue. As I pushed more and more, I found myself in this land of treating women with these conditions.

Microsurgery uses the ultimate surgical precision techniques. You can use these to get the best results. Back in the ‘80s, they would perform tubal surgery, which goes in to address every single capillary. You would encounter vessels you couldn’t see with the naked eye. Then, laparoscopy came along and gave us a whole different view. This is minimally invasive. Even though it didn't give the same exact resolution, it almost did and everything you adapt from microsurgery to laparoscopy became the norm. You can control the bleeding and remove all of the lesions without leaving any scar tissue behind, which is the goal.

I realized this was a just cause. This was the right thing to do. We will succeed, as a foundation, if we remove these shame-producing practices and address this as a disease rather than a condition. That will make a big impact on how we can manage new challenges.

Georgie: does everyone need laparoscopic surgery?

Dr. Seckin: probably not. Not everyone who has endometriosis needs laparoscopic surgery.

One of the symptoms of endometriosis is no symptoms. The only symptom becomes fertility issues. The prevalence of patients like this is unknown. That’s why we don’t really know the prevalence of endometriosis. We may know the incidence, which is 6-12%.

There is a whole group of women who are infertile and never get diagnosed.

Georgie: that was something that struck me at the endometriosis conference. I was constantly hearing about the severe impact on people’s lives. I was definitely tearing up when you gave the example of the burn patient. The stories I hear of women are astounding. I sometimes feel guilty that I didn’t have pain and could get pregnant. For some women, they have surgery after surgery and still suffer. It became clear at the conference that we don’t know how many people have this. Because there hasn’t been a diagnostic test, unless someone gets surgery, they may not count.

One of the things that a lot of reproductive endocrinologists talk about is that “evidence shows” that endometriosis doesn’t impact fertility. Because of this, they don’t feel the need to recommend surgery. In the ASRM findings, they say if you have late-stage that you should get laparoscopic surgery. But a lot of providers say that, because of the data, it isn’t necessary. We really have to fight. Helping women understand is so important.

Dr. Seckin: it’s important to underline the fact that I never tell anyone they need surgery. I want the patient to tell me they want surgery. They are the one who lives with pain. I am with them for an hour of consultation but it is their life. If it impacts their daily functions, their happiness, their productivity then something needs to be done. Often, even with pronounced symptoms, women are made to believe it’s normal. It’s mind-blowing. Mother-daughter relationships are crucial. Some women are so ambitious that they have a veil blocking their understanding until they’re pinned against a wall by extreme symptoms.

Many women get sucked into the idea that they have IBS, which is BS. They don’t recognize that their symptoms and flare-ups could be endometriosis related bowel symptoms. These are very important and include constipation, diarrhea, cramps, bloating and gas. These symptoms are almost clinically diagnostic. Painful periods that gradually get worse and don’t respond to non-steroid pain medication shouldn’t be ignored. Pain during deep intimacy with penetration/contact.

I should confess that I learned what a period was very late in my life. In my culture where I was raised, it wasn’t discussed. Even a girlfriend of mine would say that she was having a period. Even as a doctor, I read what a period was but I didn’t really know what it meant. I read it from the books. Learning it from the book is different than learning what a period is for a woman.

A lot of researchers, a lot of people who talk about endometriosis, have no idea about real endometriosis. They have never seen an endo patient in a clinical setting. The way the disease is brought to a doctor’s attention, the way a woman verbalizes her pain, and how everything links together is a complete mystery to most researchers. When you listen to endo literature, everyone is repeating themselves. It’s good science, based on logic and references, but everything is repetitive. It scores academically but doesn’t help women. It’s been 100 years since Sampson described this disease. We don’t understand much more than that now.

Early diagnosis and awareness are key. Decades ago, I said that early diagnosis is the best prevention and the only way to halt the disease and move forward. Only with awareness can you get early diagnosis.

Endometriosis is a disease you can diagnose earlier and prevent it from jumping from one stage to another. You could very well prevent infertility, losing an organ, bowel obstruction and other things if you detected the disease early.

Georgie: I was a chemistry major, I’ve been in the biopharmaceutical industry for years, and I had no idea about endometriosis. If you don’t know to look for endo, you may not find it. How does someone get diagnosed? The diagnosis right now is laparoscopic surgery. If someone is in the early stages, it’s harder to find out through an in office exam. How can someone get diagnosed earlier? What kind of patients can be diagnosed early?

Dr. Seckin: many girls know their mother’s history now. If there is a history of endometriosis, that is important knowledge because it can create a high chance of a daughter having this.

Second, we teach women that certain symptoms don’t have to be severe but if they’re together (bowel symptoms with painful periods), they’re not normal. Normalcy may be pushed by a mother or doctor but self-awareness is a key. These symptoms should be recognized without panic. Awareness is a serious part of education. That’s why, with the foundation, we started a high school education for young girls and boys. A man can recognize things in a relationship that a woman may not want to bring up or doesn’t see. Endo affects not only a woman but everyone around them.

From a medical perspective, you don’t need laparoscopy to diagnose someone with endometriosis. Out of 100 patients, I don’t have more than two a year that I go in and don’t see any endometriosis. However, there are types of endometriosis that are massive and types that are minimal.

It’s easy to diagnose endometriosis with easy findings: sonogram you see the cysts. Endometrioma is the end stage of endometriosis. When the ovary gets a cyst, it’s been cooking there for years. For the early stages, there is no biomarker or no image studies. Doctors will say, “you’re complaining about pain but everything is negative. Maybe it’s in your head.” However, if you really ask the right questions to a female patient, the answers will start popping up. Most of the time, these symptoms have been imposed as “normal” to a woman.

It’s not normal to have pain with a period. Second day pain, third day pain is not normal. If the pain continues after the flow starts and stays or lateralizes, that means something.

It’s not normal to have excessive bleeding. Tampon + tampon means a lot.

It’s not normal to have specific pain. Is a woman experiencing uterine pain, midline pain, cramping? Providers should be asking these microscopic questions to get to the bottom of a woman’s issues.

There may be issues with ovulation. If endometriosis is present, ovulation could be painful.

GI issues result in something women call “endo belly.” All of these things with GI feel terrible and can be endo-related.

GI doctors often get endometriosis patients and they are the least informed. If they don’t have the courage to push forward to a diagnosis, they’re directing a train to the wrong station, and a woman may not get answers for many many years.

The real evidence is under the microscope.

Georgie: I remember a girl in history class who was keeling over and in the fetal position by her desk. I’ve always wanted to contact her and find out if she was diagnosed with endo. It was vivid enough that I remember it back from high school.

Dr. Seckin: that’s why high school education is so important. I was talking at the UN to a women’s group. One journalist came to me and said, “I think you should also consider pre-adolescent education.” These concepts of what is normal and abnormal should be common knowledge.

Georgie: if young women have symptoms or at any age, you said that doing things early is important. I’ve read so much about things you can do with diet, removing toxins and other steps to manage inflammation. At what point does surgery play more of an important role? Is it as simple as, if someone is in earlier stages they manage it through diet and other things and symptoms subside? Or, is it always that surgery is needed? After surgery, can endo come back?

Dr. Seckin: non-surgical management techniques are important. Inflammation and toxins are a similar concept. The systemic effect of endometriosis is fatigue, headaches, not feeling right. Diet, exercise and other support measures could be formatted before surgery.

I like to emphasize exercise. Estrogen and adrenaline are related. Exercise can help you eliminate excess estrogen. Endometriosis is estrogen sensitive tissue. Exercise has a huge effect on estrogen and the way you feel. These elements are part of the successful surgery.

Ethically, surgery should be decided by the patient. Surgeons should relate to patients very honestly and transparently. If a patient comes with symptoms, nothing will get rid of endo entirely. They may subside symptoms. People can live with those symptoms using things like birth control pills… for a while. It doesn’t get rid of endometriosis but you could live a normal life and not need surgery. But if pain medication and birth control pills don’t help, surgery would be necessary.

Georgie: I published our endometriosis information page with Fempower Health. I was trying to provide women with a tool to find endometriosis surgeons. The most I’ve heard you report is 200 qualified surgeons in the entire world. Given that there are no sufficient databases, how do women know who to go to?

Dr. Seckin: that’s the biggest challenge. Let me clarify. OB GYNs are not trained as true pelvic surgeons, even though they are the most proximal doctors to do pelvic surgery. In their four years of training, three-quarters or more of their time is focused on obstetrics. The rest of GYN care is medicines, infections. Very little time is spent to teach them about surgical techniques and good surgery. Even if you can do a laparoscopy, that’s just looking inside, not doing endometriosis surgery. If a doctor is really doing obstetrics in their practice and responsible for your endometriosis surgery, that’s a big red flag. That’s not the right person to do it. On top of that, a patient should ask the right questions:

  • How many endometriosis surgeries have you done last month? Some providers do it frequently and some don’t.

  • How many years have you been doing endometriosis surgery?

  • Who works with you?

  • Do you have a set up (room, staff) and a team to perform endometriosis surgery?

  • Who is the leader of the surgery team?

  • Would you take pictures or record my surgery? If a surgeon doesn’t hesitate to do that, that’s a good sign. Willingness to record surgery means that the surgeon themselves will have both a dictated and video record for reference.

There is no simple endometriosis surgery. Each one is complex and difficult. You go in to remove as many lesions as possible.

There is a series right now on Netflix about our team in Manhattan (Lenox Hill) - I see these guys every day and we operate together. I’m proud of that. But for women in remote areas, this isn’t accessible. But it is still important.

Georgie: one of the things that has fascinated me is repeat surgery. Does it happen a lot? Should it not happen if the surgery was done properly? Does it depend on the stage you’re in?

Dr. Seckin: there are three factors: the patient, the doctor and the disease. The most important factor is not the patient, it’s the doctor. The most frequent cause for repeat surgery is incompetent or incomplete surgery. Unrecognized or recognized but not treated; left and never mentioned. If tissue is left behind, the patient will come back.

The recurrence of pain doesn’t mean endo is back.

Georgie: since we don’t know why endometriosis begins, how do we know that if you do the surgery it can’t come back?

Dr. Seckin: endometriosis never comes back in the area it is removed. This comes from my own observation and self-critical analysis. Out of all of my patients, I go back and look. Where I remove the endo, I never see as much endo as I saw. If I get even 20 suspected areas, very few of them are repeat. Most commonly, it is scar tissue. Scar tissue can cause pain and evoke the same circuits of pain as endo. Pain is very personal and cerebral. There is central pain but there is also phantom endo. In the absence of finding endo in someone, it could be characterized as a phantom endo or central pain, which has a lot of other components.

Georgie: you mentioned asking doctors how many surgeries they’ve done. How many would they do in a given day or year? What is a reasonable amount?

Dr. Seckin: in the last decade, we’ve defined expertise as 10,000 hours of focus on one subject. That’s one standard. It’s not just the number of surgeries, either, but the variety and skill level. The question has to be very straight.

Georgie: given everything that I’ve been digging into for the past decade, every time I hear of a hysterectomy I want to cry. I heard of a 21 year old endo patient who had a hysterectomy. The more you learn about this disease, the more troubling stories like this are. When does a woman need a hysterectomy?

Dr. Seckin: some doctors try to justify extreme circumstances with this procedure. I’m collecting information on cases like these, which do seem to center in certain areas of the country. Unfortunately, these doctors are prominent. Ethically, it is very concerning. You see cases with women with 20 surgeries and then removing ovaries or having a hysterectomy. Or, women taking advice from a single clinician and having a hysterectomy at the age of 19 is deeply concerning and I think is a crime. Removing organs or repeating surgeries too many times should cause everyone to revisit standards.

Georgie: from a medical perspective, when is a hysterectomy the right choice?

Dr. Seckin: some patients do request this out of sexual or personal preference. Medically, in endometriosis, hysterectomy is indicated when there are massive adhesions around the uterus. Every time the uterus contracts, it pulls on every other organ. In this case, no matter what you do, as long as the uterus is there this will happen. The second is when endometriosis invades the uterine muscle. Multiple fibroids are an extreme condition. Other issues with endometrial like hyperplasia or other indications that can compound.

A hysterectomy is not necessarily removing the ovaries and may not be adequate in itself. It is an incomplete procedure for endometriosis, because the disease itself is outside the uterus. Anything short of cleaning the endo around is not the right treatment.

Georgie: I want to get your take on endometriosis diagnostic tools, specifically ReceptivaDx, which tests for BCL6.

Dr. Seckin: the BCL6 is a diagnostic tool or guiding tool. This defines the progesterone resistance. For many women who miscarry, the endometrial bed isn’t soft enough to receive the embryo and support conception. BCL6 presence is a semi-diagnostic for endometriosis, especially in the case of silent endometriosis. It’s not a big deal for people who have symptoms. For people who miscarry, their symptoms are silent or normalized. I get a lot of referrals for women who come in with high BCL6 or numerous miscarriages. With some sign of endo, they may elect to go for laparoscopy. It’s very valuable.

Georgie: last question. What is your greatest hope when it comes to endometriosis?

Dr. Seckin: this is a big one. Getting a standardized approach to the best treatment techniques in a methodical way that applies to women. As long as there are periods, endometriosis will be around. If we can find a way of testing and earlier diagnosis and promote better public awareness, we may be able to manage the disease without as many surgeries. People are working on this and we know who they are. Overall, if people have unsuccessful surgeries and their pain levels are persisting after procedures, they shouldn’t lose hope that the disease is curable. A pain-free and pain tolerable life is ahead for many women.


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