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The truth about endometriosis is that it’s a complex and often misunderstood condition that affects millions of women worldwide. The journey to diagnosis and effective treatment can be long and challenging, leading many women to suffer needlessly for years. However, in this interview with Dr. Ken Sinervo, MD, we shed light on the facts so you can finally get the endometriosis answers you need.
Dr. Sinervo is a renowned gynecologic surgeon specializing in endometriosis care and shares his extensive knowledge on the various aspects of the condition, including its debilitating impact on pelvic pain and infertility. He explains why excision surgery is the better choice over ablation in treating endometriosis, which you’ll learn all about in the interview.
Have you or someone you love been feeling dismissed by doctors regarding your mysterious symptoms? Symptoms of endometriosis can impact the lungs, diaphragm, bowel, bladder, in addition to the ovaries and uterus. The truth about endometriosis treatment is missed by well-meaning physicians due to a lack of education or training. Dr. Sinervo is here to set the record straight, simply so less women have to suffer for years before getting effective treatments.
If you are interested in learning more regarding the truth about endometriosis. You won’t want to miss this interview. You can watch on YouTube below or check out our podcast anywhere you listen.
Kenny R. Sinervo, M.D., M.Sc., F.R.C.S.C., A.C.G.E is the Medical Director of the Center for Endometriosis Care and an award-winning, internationally-renowned gynecologic surgeon specializing in the advanced Laparoendoscopic Excision of Endometriosis and Minimally Invasive Gynecologic Surgery (MIGS). A native of Ontario, Dr. Sinervo is a Fellow of the Royal College of Physicians & Surgeons of Canada, a member of the Society of Obstetrics & Gynecology in Canada, a member of the AAGL and many other professional societies.
Ranking among the few practitioners in the world dedicated solely to multidisciplinary care and excision of endometriosis and the minimally invasive surgical treatment of pelvic pain gynepathologies, Dr. Sinervo is also a dedicated Fellowship Preceptor, devoting countless hours to the training and education of tomorrow’s surgeons. His extremely high volume of cases, including complex and thoracic/extrapelvic presentations, uniquely positions him to also serve as a Principal and Co-Investigator for various research studies; in addition, he is frequently sought after for his expert opinion and consultancy by various biotechnology, device and medical institutions.
Dr. Sinervo remains extensively involved in both the patient and professional sectors, contributing his compassionate expertise to countless endeavors to advance endometriosis advocacy, awareness, and education, championing patients around the world. A noted author and speaker who lectures and teaches internationally, he has countless abstracts, publications and presentations to his credit and is routinely called on by the media and leading health publications for his expertise in endometriosis and advanced gynecologic surgery. Dr Sinervo remains an active contributor to many professional organizations, including the AAGL, wherein he previously served as the elected Chairperson of the Endometriosis & Reproductive Surgery Special Interest Group and regularly serves as an AAGL Congress presenter and faculty member.
Dr. Sinervo has been active in striving for reforms in access to care issues, which often complicate treatment options for many individuals, and remains a staunch advocate for endometriosis patients. He is known worldwide not only as an endometriosis expert and surgeon, but more importantly, as a humble, compassionate doctor who truly cares for all of his patients who come to him from every corner of the world.
0:00 Dr. Ginger Garner: Hello everyone and welcome back to the Living Well podcast. I have a very special guest with me today and I’ll tell you exactly why in just a little bit, but first I would like to introduce him. Welcome Dr. Ken Sinervo.
0:17 Dr. Ken Sinervo: Thank you very much. I’m so happy to be on your podcast.
0:21 Dr. Ginger Garner: Thank you. It’s a total flip and honor, to be quite frank, to be talking to you tonight and for you to be here. For those of you who don’t know, Dr. Ken Sinervo is an incredible gynecologic surgeon and medical director of the Center for Endometriosis Care. He specializes in laparoendoscopic excision of endometriosis, which we’re going to talk about, and he’s dedicated to advancing surgical techniques for pelvic pain.
Dr. Sinervo is a highly regarded individual and surgeon globally, serving as a fellow of the Royal College of Physicians and Surgeons of Canada and actively contributing to professional societies like AAGL (American Association of Gynecologic Laparoscopists). As a prolific author and a speaker, he’s a leading voice in endometriosis advocacy and education worldwide. I think the most important thing, though, is that he is well known for his compassion and his humble service and the person that he is. Dr. Sinervo is committed to training future surgeons and advocating for improved access to care. Welcome.
1:36 Dr. Ken Sinervo: Thank you.
1:39 Dr. Ginger Garner: The first thing that I want to say is, um, to everyone listening is, um, Dr. Sinervo is, is not, uh, just another incredible world-class surgeon to me. He’s, um, I’ll just speak directly to you. You’re, you are my hero. You gave me my life back last fall. And it was on Halloween and I did dress up as Wonder Woman. Because I felt like that’s what I had to be to get to that point where I finally found the person who was going to help me.
I’m incredibly interested, Dr. Sinervo, to hear about your story. You must have an incredible path to be where you are now. But before you answer that, I just want to say thank you for all that you do and thank you for what you’ve done for me.
2:40 Dr. Ken Sinervo: Thank you. You’re going to make me cry. In terms of my path, I think a lot of it is rooted in my family upbringing and having a really good work ethic. My dad was a lumberjack. I had to cut down trees when I was growing up and cut down several hundred thousand trees to help work with my father and family business. And so I think all of my siblings kind of had the same sort of path. And I think that’s really helped them excel.
But I’m sure there was other things along the way. You know, there was never any pressure for us to go to university or college. It was just one of those things that we always did. And, you know, when I was younger, I thought of maybe following in my brother’s footsteps, but they were kind of world leading experts in their own right. And I didn’t want to follow in their footsteps because I was worried I’d fall short.
So when I was in undergrad, I was actually originally thinking of going into law school. And my friends said I should go into medicine. And I took their advice. I changed fields, and so I ended up taking a couple years longer than I might have otherwise. But, you know, I did a master’s in fetal physiology, which was very relevant to obstetrics, which I was thinking of doing at the time. And then when I was in medical school. I wanted to kind of look at all aspects of medicine, and I kind of looked at different areas of medicine, internal medicine, different subspecialties there, different surgical specialties, and then when I, you know, after evaluating everything, I found that you know, obstetrics and gyne, you know, from the obstetrics side was usually a very positive experience. And so that’s kind of what nudged me into going into OBGYN.
And then in my first year of training, I was exposed to advanced laparoscopic surgery. And that’s really where things changed. One of my mentors there, he took me to my first AAGL or American Association of Gynecologic Laparoscopists meetings. And I saw all the things that could be done laparoscopically. And I said, wow, I had no idea that we could do all these things that up until that point were being done only through open laparotomy. Okay.
And this was in the mid 90s and, you know, advanced laparoscopic surgery was really developing at the time. There were doctors who were performing, you know, surgery for endometriosis and excision surgery for endometriosis. But we weren’t doing that where I was training. And when I originally came to the United States to do my fellowship, I thought I was going to go back to Canada, where I had done my training and my residency, because there was a huge need for it there. And then during my fellowship, I realized that it just wouldn’t be able to satisfy my need and my drive and my thirst to be able to help as many people as I felt I could here.
In Canada, I might operate, you know, four or six days a month, but here I’ve been able to operate, you know, up to 20 days a month. And I just felt I would have a better ability to have a greater outreach to patients. And so I came down and I did my fellowship in advanced laparoscopic surgery, and pretty well half of the fellowship was endometriosis. And then there were two doctors in the practice, which was called the Endometriosis Care Center at the time. And the other doctor was who I became a partner with.
And it was very, very helpful for me. He was a great mentor. It allowed me to be exposed into an endometriosis only practice, which I think is very hard to find even today, after, you know, 25 years of laparoscopic fellowships for minimally invasive gynecology. I find that a lot of the fellows that I’ve trained had gone through the regular MIGS (minimally invasive gynecological surgery) system and found that they just weren’t getting enough exposure to endometriosis surgery.
And I was very fortunate that I had a situation where I was able to be in a situation where that’s all we were doing. And I think it really helped excel my ability to do surgery. I think if I had to do that on my own, it probably would have taken probably three times as long as it did to kind of become very proficient and skilled at it. And I think that if any fellows are out there who are in training, that that would be something that would be very, very beneficial if they can find themselves a practice that just specializes in endometriosis.
Because if you go into like a gynecologic surgery practice for a group or something like that, you’re dealing with whatever they give you. You know, often that’s mostly hysterectomies or some pelvic floor support. and maybe some endometriosis. So it’s really hard to get a good volume doing that. But I was very fortunate right from the get go to, you know, do a few hundred surgeries in my first years, which was relatively a very good volume. And then over the years increased my volume to between 350 and 400 surgeries a year, which is what it takes to become very proficient and skilled at what you’re doing.
Along the way, I realized about the spiritual aspect of medicine. And I also had heard so many stories of women who had been gaslit and who had been told that either they were too young or that they should wait for surgery until they’re ready to get pregnant, or that their disease was too bad, that they couldn’t, you know, there’s no doctors out there that could help them. And all those things I knew that were wrong.
And I wanted to become a very big advocate because I saw that the sooner we’re able to treat patients, I think the better outcomes they get. Because I feel that endometriosis is a very progressive disease. and it just gets worse over time. And if we can intervene at a younger age in those patients, then we’re going to avoid a lot of the more serious procedures that need to be done, like bowel resections, or bladder resections, or ureteral re-implantations, and maybe even thoracic surgery in some of those patients. Because if we do it early on in the evolution of the disease, we might be able to nip it in the bud.
And so that’s why I’ve been such an ardent advocate of early, timely diagnosis and excision of endometriosis whenever possible. And we’ll probably get into what are the different surgical treatments of endometriosis and why those two aspects of endometriosis care are very, very important.
The first thing that is important is listening to your patients. and more importantly, believing them because they have often been told that they can’t have this or they have some reason that they can’t, you know, have surgery or whatever is necessary for their care. And that’s not true. Or if they end up having disease on their bowel, that they’ll end up with a permanent colostomy, which is not the case.
I’ve done over a thousand bowel resections and have not had a patient who’s in a permanent colostomy. And so there’s these myths that most gynecologists just don’t know about the disease and how to treat it that make them dissuade patients from having the appropriate surgery done. or to have it done in a timely fashion, you know, or they’re told that, oh, you know, you only can have your surgery when, you know, it’s extreme or something like that, when that doesn’t have to be the case.
11:37 Dr. Ginger Garner: Right, right. I have a long experience or history with endometriosis and with seeing family members gaslit. It is only after actually I went public with my story and shared it that I actually had family members, other family members that I never knew had endometriosis 50, 60 years ago that came out and talked to me about it. And my own mother had endo as well.
So I remember growing up, seeing her in pain and seeing her in and out of healthcare and hearing some of those same things that you’re telling me now. And of course, she had a hysterectomy decades ago when that was, quote, the cure. I’m just going to let you talk about that for a little bit because I know you have so much to say about it. Of course, we know it isn’t, but a lot of people come into my practice or I talk to them via YouTube or whatever it is. and they’re really not sure what the gold standard or what the definitive treatment is, and they’re given a range of things.
Usually, instead of anything diagnostic, they’re just given birth control, or they’re told hysterectomy, or they’re told, oh, we can go in and just do a quick ablation and just clean that up and it’ll be done. And I’ve had patients, you know, this year in my practice with those stories. So it’s not like they’re a decade old. Right. So talk to us a little bit about all of those kind of really myth busting about what good care should look like when someone has symptoms. And I guess that the first thing that we should probably start out with is I’m not even sure that, you know, in general the public knows really what endometriosis is, and then we can launch into some of those myths.
13:37 Dr. Ken Sinervo: Sure. Well, endometriosis is tissue that is similar to the lining of the uterus growing outside the uterus. Okay. It is not endometrium. It is endometrial like tissue that has different characteristics in that it has its own ability to produce estrogen. We feel that it’s something that you are probably born with because 10% of stillborn fetuses were found to have endometriosis when they were born.
And we feel that because of the biochemical differences, endometriosis is able to produce estrogen, which endometrium cannot. And ideas of retrograde menstruation, which were popular about a hundred years ago, have really fallen out of favor if you are on top of what are the most current theories available. So it’s tissue that is similar to the lining of the uterus growing outside the uterus.
There’s a condition similar to endometriosis called adenomyosis, which the most simplest way to explain that is like endometrial or endometriosis growing within the muscle layer of the tissue. And what happens is, you know, it can cause a lot of the same symptoms that endometriosis causes. And as many as, you know, 20 to 30% of patients who have endometriosis may have both, maybe even more. It’s a condition that, approximately 10% of patients.
And the great majority of them are, um, genetically female. Okay. And it’s very uncommon to have genetic male patients have endometriosis. There’s probably about 20 cases worldwide that have been reported in the literature. So, the great majority of them were biologically female and may have undergone transgender surgery as well, but they may still carry the endometriosis afterwards. But it’s something that we see typically in most biological women.
And the two big problems that it results in is pain and infertility. And again, most of the patients that we see probably have pain, but infertility, it could explain about 25 to 50% of cases of infertility. And we know that at each stage of endometriosis, it can greatly affect the ability to conceive. You know, more severe cases are going to have a greater impact on fertility. Patients who have very severe stage four endo may have less than a one or 2% chance of conceiving. And patients who are maybe stage one and two, after even before surgery, it’s only about 60%. And after surgery, it can go up to about 80 to 85% with lesser improvement when it’s more severe disease, just because of the distortion of the anatomy and scarring that it can cause. And effects on the ovaries as well, which can significantly damage the ovaries when you have a large endometrioma or endometriosis cysts.
In terms of some of the myths that we run across is that endometriosis is cured by hysterectomy. And first I’m going to explain why that is not true, okay? There’s different ways to treat endometriosis, okay? A lot of doctors will try medical suppression, but most of those fail, and they don’t prevent the endometriosis from progressing over time. So it can often give patients a false sense of security that, oh, if I’m on this, my endo’s not gonna get worse.
And myself and many of the other doctors that I’ve trained have seen those patients have much worse disease than they likely would have been having had they had their endometriosis surgery earlier on. So while that is the first line treatment, it doesn’t necessarily mean that your disease isn’t going to get worse. And so there are other medical treatments as well, like gonadotropin-releasing agonists and antagonists. And other forms of progestins, which are synthetic progesterone, which we use for treatment or medications that block the conversion of weaker estrogens to stronger estrogens.
And so there’s all these different classes of medications that we can use to try to suppress the endometriosis. But really, if someone fails a course of birth control for three to six months, The next step shouldn’t be another five or six different birth controls. It really should be a laparoscopy. And unfortunately, most doctors don’t follow those guidelines. And so what they end up doing is they end up referring patients to many, many other doctors. They have some bowel symptoms. They’re sent to a gastroenterologist. They have some bladder symptoms. They’re sent to a urologist. And this cycle keeps going on. The average patient sees anywhere from seven to 12 doctors.
And the delay is anywhere from seven to 12 years, depending on which studies you look at in terms of from the time you started having symptoms to the time that you’re finally diagnosed. And during that time, most of those patients have to suffer unneedlessly. In younger patients, it can be extremely traumatizing because it can affect their personality. They may go from being outgoing, gregarious young patients to being withdrawn and depressed and stuck at home and canceling on their friends’ events. And then their friends don’t start calling them anymore and can totally change their life and the trajectory of their life. And so I really feel that it’s important to realize that we can make the diagnosis much earlier than we do. And if we’re able to do that, then we are able to, again, nip the disease in the bud.
When it comes to surgery, there’s different ways of treating endometriosis, which have huge impacts on the likelihood of the endometriosis coming back. Most gynecologists treat endometriosis with something that we kind of globally call ablation. So that’s where we use some energy source to try to destroy the endometriosis and that can include a laser vaporization or it can include electrical energy to try to destroy it or fulgurate it. Or can use some other forms of energy like hypersonic energy where we basically get an instrument that oscillates at 55,000 cycles per second, and it creates heat and it tries to destroy the endo that way. Those are the main ways that we try to ablate endometriosis.
But the problem with those is they probably have a 40% recurrence within the first six to 12 months and 60 plus percent recurrence within a year or two. So it’s not a great option for treating endometriosis because the recurrence rate is so high. And this may be some of the problem why doctors don’t like treating endo patients, because as physicians, we’re highly functioning people.
We have high success rate at everything we do. And if I’m a failure more than 50% of the time, I’m not going to feel really good about treating my endo patients. And so I think that in the back of their head, they’re like, oh, well, her endo is just going to come back. And then they’re going to be coming to me every month or every few months. And I’ll just tell them that all we can do is another ablation surgery, or we can try stronger medications that have much more side effects or ultimately give them a hysterectomy when they don’t necessarily need one.
And so the alternative to ablation is excision surgery. So what we’re doing with excision surgery is we’re cutting out the endometriosis. So if you can use the analogy of a tree, and I cut the tree down to the ground, and that’s kind of what ablation does. It’s kind of treating the surface part of the tree. It misses all the roots of the disease. But by doing excision, what we’re doing is we’re making an incision around that group of roots and we’re undermining those roots and cutting out the full thickness of the disease. And by doing that, we can have occurrences of less than five or 10%. It might be slightly higher in patients who have a really severe disease, but in probably 70% of patients who have either stage one or two disease, they probably have less than a 5% recurrence. And so we can go from a 60 or 70% recurrence down to about a 5 or 10% recurrence. Which is much, much better for patients’ quality of life, need for repeat surgeries, need for continued medications. And so that is why I have been performing excision. I saw the difference immediately in following up on patients who had operated on when I was a fellow compared to what it was like when I was a resident, where we were ablating disease. And I became a quick believer.
And also, you know, our director of our center, Heather, we don’t, she’s an ardent believer in it as well because she had had 24 or 25 procedures before she ended up coming to have surgery with my partner at the time. And she had failed IVF and, you know, tried to get pregnant for many, many years and hadn’t been able to. And she was able to conceive the next cycle after she had her surgery. So she’s a huge believer. And that’s why she’s as sold on excision of endometriosis as I am, because it’s affected her personally. She has a wonderful, you know, 23 year old, I think 23 year old son and that you wouldn’t have had, had you not had excision. If that’s not going to open your eyes, nothing will.
23:46 Dr. Ginger Garner: The other thing that I think is really important to point out is it’s incredibly important to pursue the route of excision first because, and you can explain this much better than I can, because if someone has ablation, doesn’t it make it sometimes harder? Is there more scarring? Does it make it more difficult to then do your job with excision if someone has had multiple surgeries with ablation?
24:14 Dr. Ken Sinervo: Well, yes, it can make the surgery more difficult, but any bad surgery can make the surgery more difficulty. We see it with patients who’ve had bad excision or incomplete excision. But when you go in and you cauterize, you’re basically killing some of the tissue that you are trying to treat. And it affects the blood supply of those tissues extremely. And you also get something called retroperitoneal fibrosis or scarring under the surface. which I think when you have multiple procedures with ablation, you end up probably causing more damage to those tissues than the endometriosis may in and of itself cause.
And so I’m, because I’ve had so many patients who’ve had multiple surgeries and sometimes as many as 15 or 20 of these ablative surgeries, they can become much, much more difficult to treat. I’ve had patients who’ve had that many surgeries and still been able to help them, but I’ve had others who, unfortunately, their disease has changed from something that was surgically treatable into something that has to be managed medically or with pain management and things like that.
So they end up having something called central sensitization, where the wiring in their nerves is no longer acting the way it should. And it causes the body to feel pain in ways that it normally shouldn’t. And so we want to try to avoid those unnecessary surgeries, which can change a patient from a good excision candidate to someone who’s a chronic pain candidate.
Fortunately, I feel that if we’re able to treat the disease before they’ve had too many procedures. And I, you know, my average patient has had three or four by the time they get to me, and we still have 85 to 90% of patients who feel better. So I still feel that despite the number of surgeries that the average patient has had, that excision can still offer them extremely good hope. And of course, if we can operate on them the first time they have surgery, that’s even better because we really minimize the likelihood of recurrence then. We don’t have to deal with the incomplete treatment that they’ve had before. In terms of hysterectomy, which we were talking about earlier.
26:33 Dr. Ginger Garner: Yeah, let’s get back to that one.
26:36 Dr. Ken Sinervo: Endometriosis by definition is a disease that’s outside the uterus, okay? And if you go in and you do a hysterectomy on a patient and don’t excise their endometriosis, 60% of those patients are going to continue to have pain. There was a study that was done in 1995 that looked at women who had had a hysterectomy with and without preservation of the ovaries. And they found that 60% of those patients had persistent pain afterwards because it wasn’t because their ovaries were there. It’s because the endometriosis wasn’t excised. And so what they had done is they had gone in and like everyone was doing at the time and they were just burning the disease.
And so that’s why the 60% recurrence, isn’t that awfully similar to what the recurrence is when you just treat the endo in the first place? It’s almost exactly the same. And so, you know, yes, some patients need a hysterectomy because they’ve got a uterine source of pain, but for a treatment and cure of endometriosis, that’s not the case. When they removed the ovaries, the recurrence rate was lower. It was, but at the sacrifice of removing ovaries and castrating women who don’t need to have medical castration or surgical castration.
And we know in the last almost 30 years since then, how important it is to preserve ovaries in patients whenever we do surgery, and especially if we’re doing a hysterectomy, because the hormones that they produce, while we can replace them, we’re not nearly as good as the ovaries at giving the hormones that every patient needs.
And so what happens is they may be at greater risk of heart disease, they may be at greater risk of bone disease, and there’s increasing evidence that maybe from a mental perspective, they may have poor memories and maybe other deficits down the road. And estrogen and other hormones are important in terms of depression and other psychological function as well, because all the receptors in the brain for those neurotransmitters also have receptors for estrogen in them as well.
So it helps to modulate things to some extent. And so it can have a much greater impact than we were realizing 30 years ago. And even up until this day, there’s still a lot of doctors when they do a hysterectomy for endometriosis, do removal of the ovaries when it’s not necessary. And when that’s the case, I think they do an injustice to the patient because they are robbing them of something that may be beneficial to them.
29:13 Dr. Ginger Garner: Yeah, I feel such a personal connection to that, of course, for multiple reasons beyond my own surgery, but also thank you for saving my ovaries. But none of that was able to be possible for my other family members who I watched go into a sharp cognitive decline, who I watched have all kinds of side effects that were really preventable, all these genitourinary symptoms. And for those of you listening, it’s like, well, what is that?
You may come in with urinary frequency. You go to the bathroom all the time. You get up in the middle of the night. Intercourse becomes painful. You start to have leakage from uh, whether it’s urine, bowel or bladder leakage. There are lots of other things that can happen with sexual health and, um, and vulva vaginal health, um, just from the loss of that. And so it, I feel a whole level of deep sadness having watched some of my own female family members go through that stuff that was totally preventable.
30:23Dr. Ken Sinervo: Absolutely. Yeah.
30:26 Dr. Ginger Garner: Yeah. So one of the questions I have is, um, because one would think in this day and age that you can just go and get care and that it’s easily identifiable, but I think that there’s a misconception that it’s easy to diagnose with a test, with ultrasound, with MRI, with things like that. Talk a little bit about that to the listener who may not understand how difficult it is.
Because that’s why it’s kind of so darn hard to get endo care because it’s hard to identify because it can seem like multiple things. For example, I’ll give you this as a real example from my story is I know that endometriosis is not just a reproductive, it’s not a reproductive organ disease. It can be everywhere. And we’ll talk about that in a second because You are amazing in that realm of looking everywhere and making sure no stone is unturned.
But how many times did well-meaning colleagues, this is OBGYN, other MDs, all the people that you bounce around to say and tell you, oh, bloating, painful bowel movements, whatever, has nothing to do with and could not possibly be endo. Which I heard people say within the last year. And of course, my patients say that as well too. So can you explain a little bit about how this disconnect happens, how well-meaning physicians would unknowingly gaslight their patients, and tell them things like this. That, you know, bowel, bladder pain doesn’t have anything to do with endo and, and, and why it’s so hard to get care in terms of identifying it to begin with.
32:18 Dr. Ken Sinervo: Well, um, I think that really comes down to education and training of the doctors. Okay. You know, if you look at a typical residency training program, there’s probably a day on endometriosis and they might have a day every year. Okay. So it’s not something that they deal with on a regular basis. And it does make up about 10 or 15% of office gyne visits are for pelvic pain. So it’s not a small percentage of patients and 10% of patients have endometriosis as well. So, again, I think it really comes down to education and training.
And I can see that in terms of how doctors treat endometriosis regionally in the country, as well. Some places they will only treat with medication. They won’t even like consider surgery, or if they do, they’ll just do, you know, like a look inside and not treat it surgically. They’ll just look and say, oh, you got endo, so I’m going to put you on something stronger, which is associated with much worse side effects. And so part of it I think is, you know, what their training is and that can have a huge impact on it.
And then I think part of that leads to the fact that they also don’t realize that it can affect so many other organs. And they may not see a bad case of endo necessarily all that frequently. And they don’t realize just even the presence of endometriosis on or near the bowel can cause a lot of bowel symptoms. So we know that probably, you know, anywhere from 15 to 35% of patients may have some endometriosis involving the bowel.
And it doesn’t necessarily even have to be directly on the bowel because it produces a lot of inflammatory mediators, which can affect bowel function. Patients will often present with endo belly or their, you know, they wake up with a flat tummy by two o’clock in the afternoon, their abdomen’s bloated because their small bowel is floating in this soup of inflammatory mediators, which will just cause inflammation on the bowel and cause it to move more slowly and cause the bloating to to kind of wrap up next day. It’s same thing just repeats over and. And this is one of the reasons why patients are referred to gastroenterologists and the gastroenterologist will, you know, do their normal workup.
They examine the patient, they get their history and they do a colonoscopy and an endoscopy. And they say, well, you don’t have inflammatory bowel disease or Crohn’s or ulcerative colitis. So you have IBS. Okay. Then the patient’s left thinking, oh, you know, this abdominal cramping is just IBS or, this diarrhea is just IBS or this constipation is just IBS when in reality the great majority of those patients probably have endometriosis as the underlying cause of their disease of their IBS symptoms.
And so that is one of the reasons why a lot of patients get sent to a gastroenterologist and potentially misdiagnosed with that. As many as anywhere from a third to two thirds of my patients present with bowel symptoms. As many as 65% have diarrhea, 32% have constipation, 40% have intestinal cramping. and about 20% have painful bowel movements. And so this is why they’re misdiagnosed with something that has nothing to do with their gut directly. Sometimes it might, but it’s one of those, you know, reasons that they often get sent to many different doctors for different diagnoses.
When we treat the endometriosis, most of those symptoms improve. It doesn’t get rid of all those symptoms for some of those patients, but probably, you know, my diarrhea rate goes from 65% down to 13%. So 80% of those patients are improved by removing the endo. And so the same thing with constipation, you know, goes from 32% down to 8%. So literally three quarters of those patients are feeling better after surgery.
There are sometimes where the disease can be directly involving the bowel and 80% of the time it’s superficial. And we can just peel it off, like taking an envelope off of, or it’s taking a stamp off of an envelope. We can just shave underneath the disease, not going into the bowel. Or if we go into the bowel, it’s very superficial. And we can reinforce the bowel, it heals perfectly fine.
But about 20% of the time they may actually have invasive bowel disease where the disease is significantly altering the anatomy of the bowel and its function. And so it distorts the anatomy of the bowel such that there’s a narrowing of the bowel there. And what happens is most of these patients end up having this very painful cyclic bowel movements with alternating constipation and diarrhea and severe intestinal cramping or a lot of pain before bowel movements. Often they’ll have left lower quadrant pain because that’s where the large intestine kind of comes into the pelvis and so they’ll feel more pain on the left hand side.
And then, you know, we get in there and we see that they’ve got a significant narrowing of the bowel and they may actually need a bowel or section where we cut out a segment of bowel and reconnect them. And we work with a colorectal doctor to do that so that we have the best experts available so that we can have the best outcomes. And because most of these bowel resections aren’t at the same level that they do cancer surgery for colon cancer, they have much better outcomes.
So in terms of risks of the surgery, it’s much less than it would be for say a colon cancer patient, because most of their bowel resections are very, very low down where the blood supply is not good. And the blood supply where we’re operating is much, much better. And instead of, you know, maybe 10% chance of a severe complication, it’s probably less than a few percent. But when you talk to those patients, 90 to 95% of them are having significant improvement in their bowel symptoms and their quality of life is significantly improved. And, um, you know, they’re able to, they, they have bowel function that they say, I didn’t know it was supposed to be like this, um, because it’s a dramatic change.
38:48 Dr. Ginger Garner: Yeah.
38:49 Dr. Ken Sinervo: And similarly with the bladder, you know, if there’s endometriosis on the bladder, it can mimic other problems like interstitial cystitis, bladder urgency. And in some patients, the endo may actually penetrate all the way through the bladder wall. Where we may have to resect part of the bladder wall and sew it back up. Or it can also block kidneys by deep disease involving the ureters or the tubes that go from the kidneys to the bladder. And when that happens, the urine backs up and the kidneys start to fail. I’ve had patients who have been referred to me after their kidneys have died.
You know, I’ve never had a patient who’s had bilateral ureteral obstruction, but I have had patients who came to me and their kidney function was less than 10% on one side and normal on the other. And they often need to have their kidney removed because it just wasn’t working and it was going to be increased risk of blood pressure problems and infection down the road, which could affect their overall health.
So, you know, by doing surgery earlier, we’re organ preserving, we’re lifestyle preserving, we’re quality of life preserving. And all those things are extremely important that I think that we can probably avoid 80 or 90% of the problems that we see in some patients who are ignored or dismissed. And sometimes those, we know that in patients who are black or African-American, I get a lot of African patients as well, you know, just not African-American or Caribbean-American or Caribbean-African patients. You know, we see that they often, their disease is often worse because they may be even dismissed longer than some of the patients that we see.
And so, and there could be other racial differences, you know, in between different Asian patients and how they perceive pain and how they report pain. And do they discuss painful intercourse with their doctors, you know, because, you know, one of my colleagues was giving a talk at the end of the summit the other week, and he’s from India. And he said, oh, you never ask an unmarried woman if they would have pain with intercourse, because they’re not supposed to have pain or have intercourse. So you just don’t ask the question.
And so as society changes, you know, I guess conventions change as well. And so you’re missing a lot of those patients who might have otherwise gotten diagnosed with a certain type of problem if you just ask the right questions. And that’s why it’s very important to have a really good, broad spectrum of questions for those patients so that we’re not missing any disease. That could be very, very important in terms of how we manage them, both medically or surgically.
41:43 Ginger Garner: Yeah, yeah. And I think that’s a really important point for the listener, because if a patient comes in to me with pelvic pain. Very, very often they’ll say this, I don’t think this is relevant, but I also have pain with intercourse. And they’re at a pelvic PT with pelvic pain. It is the region. And yet they’re still dissociating the two as if pelvic pain and painful intercourse are somehow separate and inappropriate to talk about. I’m like, that’s exactly what we treat every day. It’s very relevant. Let’s talk about it.
42:23 Dr. Ken Sinervo: Yeah. There’s no such thing as TMI for us. Because it’s very important to know about those aspects of a patient’s, you know, life, their sexual function, and, you know, or having a partner that they haven’t been able to have sex with the next number of years, because it’s either hurts every time, or it’s just too painful for them to even have intercourse. And then getting to the bottom of why is it hurting?
And a lot of the time, you know, yes, there may be pelvic floor dysfunction, but most of the time there’s a reason for that dysfunction. And that’s where, you know, the collaboration between, you know, a good endo specialist and other pain specialists is very important and getting the patients to the right surgeon and getting them to the right physical therapist, as well. So that they can get the appropriate care either beforehand and or afterwards.
Most of my, almost, you know, all of my patients are the great majority of them end up going to pelvic floor physical therapy because they’ve had longstanding pelvic pain, which has caused their muscles to respond in a way that they themselves cause pain for those patients. And we have to break the cycle. And one of the things I often see is that patients who fail physical therapy where their pain keeps coming back, they’ve got something else going on. And that’s often because of endo or adenomyosis that we have to get to the bottom of.
And one of those things that you may have seen yourself is patients who have had a hysterectomy. and they’ve been told, well, you can’t have endo because you had a hysterectomy. It’s like, well, we know that’s not true. And, you know, 70 to 75% of the patients that I operate on who’ve had a hysterectomy are found to have endo. Okay. And often they may have significant alterations in their anatomy that the doctor just didn’t know what to look for or underestimated the severity of the disease, because sometimes the disease can be hidden.
And I had a patient a couple of weeks ago who I did a surgery on who had had a hysterectomy and the doctor said, oh, there’s a little bit of endo, but, you know, it wasn’t that bad. And, you know, when I operated on her, her bowel was completely stuck to the back of the vagina. There was endo on the surface of the bowel and without putting a probe inside the rectum, it could have easily been missed. And that’s why, you know, as an endo expert, you know, everyone has to have the bowel fully evaluated so that we can see these somewhat hidden types of disease that may be missed otherwise.
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44:59 Dr. Ginger Garner: Yeah. It’s, it’s critical. There, there, there are so many levels to this. Um, you know, for those who are listening, if you’re in healthcare, um, like for my orthopedic colleagues who may go, I don’t know what to do with the pelvis at all. It’s important to listen to those bowel bladder symptoms. It’s important to listen to back pain, SI joint pain, or what they may think is sciatica that actually could be something else. If it is overlapping with, you know, gut issues and pelvic pain, They could, you know, accidentally stumble into the orthopedic PT office and it be, you know, misunderstood for a long time.
One of the things you mentioned that I wanted to circle back to is a thing that I don’t think a lot of people think about. It’s something that I had felt through the years, but it’s not that everyone has thoracic endometriosis. Now, for the listener, they’re like, okay, what is thoracic? I’ve gotten down what endo is, but what’s thoracic and how does that manifest itself? But There’s two points here I want to make. One, I would love to hear you talk about, because you’re the king of thoracic endo here, and I want to hear you discuss that.
For some people, it can be like, for me, it wasn’t endo on my diaphragm, but I had adhesions everywhere from all the other surgeries that I had had. And so I want to hear you talk a little bit about thoracic endometriosis, you know, what that is, what are the symptoms of that? Why is it so easy for practitioners, for surgeons to miss that? And for my PT colleagues out there, or for people who think, wow, I could have endo, or I love someone with endo, yes, it can hurt to breathe when you have, or if you have endometriosis, that’s one of the things that could that occur with that.
46:56 Dr. Ken Sinervo: Yeah. So one of the things that sometimes can cause some breathing problems or chest pain is even, you know, physical therapy problems. So if they have pelvic floor dysfunction. It’s a chain, the muscles in the pelvis connect to the muscles in the back and the abdomen, and that goes to the chest as well. So sometimes, you know, by doing appropriate physical therapy, we can eliminate some of the causes of chest pain.
But thoracic endometriosis is really a group of conditions in which there is endometriosis within the lung cavity or the diaphragm, okay. If you look at the statistics, and it’s really hard to know the real numbers because you have research that’s done in the thoracic or the lung side of things, and then you have research that’s done from a gynecologic perspective for endometriosis. And the thoracic literature suggests that catamenial or collapses during your menstrual cycle are the most common manifestation of thoracic endometriosis.
And so patients when they’re either within a few days of their cycle or during their menstrual cycle, their lung collapses. And more often than not, they’re just dismissed as, you know, unless the thoracic surgeon asks the right questions, they’re just dismissed as having what we call a spontaneous pneumothorax or a collapse of their lung. Which causes acute chest pain, shortness of breath, and may end up putting them in the hospital, in the emergency room, and may end up getting a surgery.
We also see a lot of patients who have diaphragmatic endometriosis. Where there is endometriosis growing on the diaphragm. And if it’s low enough, it can cause some chest pain, just kind of, you know, at the lower part of the rib cage or right below the breast. But if it’s over the dome of the diaphragm, which is kind of the very top part of the diaphragm that really moves a lot, there’s a nerve there called the phrenic nerve. And for those patients, they often have a pain that goes into their shoulder or their shoulder blade, or even down their arm, or even for their neck and ear.
That is because the endo is involving the phrenic nerve and it does something we called referred pain. So the nerves that make up the phrenic nerve are the same ones that innervate this part of the body. And so it fools our body into thinking that’s where the pain is. And so I’ve had patients who’ve had all sorts of work done up on their shoulder or their neck, even had shoulder surgery that was not needed because they had endometriosis involving their diaphragm.
One study that looked at all the patients that they had over, you know, I think it was like a five-year period, they treated about 3,000 patients and change. And they found that about 1.5% of their patients had endometriosis involving their diaphragm. So if you translate that into the United States, that’s 130,000 plus patients. Okay. Taking 10% of, you know, patients having endometriosis, you know, just doing the population numbers.
So when most gynecologists, you know, are asked, well, I have this, I have endometriosis, could the chest pain I’m having be related to endo? Those doctors, because their training is inadequate, or they may not know what the real statistics are, say, oh, that’s so rare, you can’t have it, you know. Meanwhile, I’ve treated a thousand patients with suspected endometriosis involving either their diaphragm or their lung. And we’ve diagnosed endo probably in at least half of those patients because a lot of them come with recurrent collapses that are because of endometriosis or diaphragmatic endometriosis itself.
And there are other forms of endo that can also occur in the chest. Some patients may have pulmonary nodules, although those are very rare due to endometriosis. And some of them may have something called a hemothorax. Where they have bloody fluid filling the chest and prevents their lung from expanding as well. And they often tend to have the most severe disease because we have to be much more aggressive in treating their endo involving their chest to get rid of it all. And sometimes we have to actually do things to the lung itself to allow it to re-expand.
So this can be quite extensive surgery for those patients. But the great majority of those patients, or almost all the patients who have severe disease, are going to have disease in their pelvis as well. So that’s why it’s important that we treat both their pelvic disease and evaluate their diaphragm and or their chest if we have to, and treat them in one surgery so we can prevent them from having recurrent collapses or persistent chest pain that doesn’t go away after, you know, other modalities have been used to treat it. Or pulmonary nodules or coughing up blood in some patients.
So it’s very important to realize that it’s probably a little more common than you realize. You know, it’s about 10% of, or actually probably 20% of the patients that I see because, you know, as you mentioned, I’m kind of one of the leaders in this area. And I was probably one of the first, you know, in 2008 to routinely start working with a thoracic surgeon to treat these patients. Probably being the first multidisciplinary center for combined laparoscopic and thoracic endometriosis surgery in the country and probably one of the first in the world.
You know, it was interesting a few years ago, the British Society of Gynecologic Endoscopy had a big news report that they had done a combined thoracic and robotic surgery for endometriosis involving the diaphragm. And it was like, well, you’re about, you know, 14 years too late, but this is something that we’ve been dealing with for, you know, 14, 15 years at the time. And when they tried to educate their specialists, they came to me and I told them what they needed to look for and what they needed to do so that they could try to appropriately identify these patients and get the right care that they need and get them into the right place where we can treat their disease fully.
And you mentioned that adhesions too can cause pain and we know that. I’ve had many patients who I haven’t necessarily found endo on them, but I have found scar tissue and that prevents the diaphragm from moving normally. It causes pulling pain where the liver is attached usually to the diaphragm, preventing its normal excursion. And sometimes I’ve even had patients who’ve had so much damage from their endometriosis that their liver has been herniating through their diaphragm and reducing their lung volume significantly. You know, one patient had only about 60% of her normal lung volume on her right-hand side because of a huge hole in her diaphragm.
And so it’s important to recognize that these things can be caused by endometriosis and to not just quickly dismiss the patient and say, oh, you can’t have that. That’s so rare. You know, every patient that I talk to, I have to prove it. That they don’t have it, okay? Before I say that, well, I don’t think it’s related to your endo. And by doing that, I’ll diagnose a heck of a lot more patients than my colleagues will, because they won’t even look at it in the first place.
And so that’s why it’s very important, you know, as it is with every patient is to one, listen to them and, and ask the right questions and believe them. You know, it’s not, patients aren’t coming to me because they want thoracic surgery. Okay. Recovery from that’s a lot more involved and, but they want to get to the bottom of it. They want to make sure that they don’t have it. And if we do have it, that we do the best possible treatment for it, which is excision of their endo, no matter where it is. So that we can, you know, improve their quality of life.
You know, I had one patient who had basically couldn’t move their head more than about five or 10 degrees to one side because of their endo on their diaphragm. And the day after surgery, she was practically an owl twisting her head around, um, because she was able to do that. And for the 10 years before that, She had gone to all sorts of specialists and had acupuncture and physical therapy and massage. And every time, she might’ve gotten a little bit better for a day or two, but it always came back. And it got to the point where she couldn’t even move her head one way. And the next day she was 100% better. So we know that it can have amazing benefits to it if you just recognize the disease and believe your patient.
55:42 Dr. Ginger Garner: Yeah, I think that’s the last thing that you said is the most important thing and could save so many people’s quality of life. Because once it deteriorates to a certain extent, it is hard to just bounce back and recover from that. And to the listener, I think that’s why it’s so incredibly important, like Dr. Sinervo said earlier in our chat, is to seek out someone who exclusively does this. It’s the same way that I approach someone who’s doing a particular orthopedic, you know, from the orthopedic side. I’m not looking for someone who does a smattering of this and that. I really want that individual to specialize.
And I think it’s extremely important, extremely important. Maybe the most important takeaway from our time is to seek out someone who exclusively does that and there are some resources available for you if you are seeking that kind of care. I have, goodness gracious, we could continue. I have such a big list of questions, but I wanted to mention Nancy’s Nook out there as a wonderful resource to find to help you find, also to talk to other people, reach out.
We answer questions all the time from people, sending people in the right direction to amazing surgeons like Dr. Sinervo in Atlanta that exclusively treat endometriosis. The EndoSummit is another wonderful conference that happens annually. It is the most unique conference I think I’ve ever been to because it’s one where patients, individuals, therapists, and surgeons are all intermingling and listening to one another. Because, the last thing you said, believing your patients and listening to their story is the most important piece of all of this.
As the listener, if you have not found that person who listens to you, who you felt heard, who you felt seen, then you haven’t found that right person yet. So I just want to encourage you to reach out. We will have all of the resources for contacting CEC and Atlanta and the resources that I mentioned in our show notes.
And before we hang up, I have a couple of rapid fire questions. Now, you are probably one of the most busy people on the planet. So you may go, oh, I don’t currently have a book I’m reading right now. But I’m wondering, for someone like yourself who is so incredibly compassionate, incredibly skilled, and incredibly smart and have achieved what you have, What do you do for fun? Are you reading a book? Are you listening to an album? I know you have two dogs.
58:52 Dr. Ken Sinervo: I have three dogs, actually. Three dogs? Yeah, I have three dogs and a cat.
58:56 Dr. Ginger Garner: Because my sticker, pet more dogs. Of course, that’s good. That’s one way I have fun. But what do you do?
59:02 Dr. Ken Sinervo: Well, you know, I’m married, I have my wife, I have some grandchildren, so we do spend time with them. We’re, you know, fortunate enough that we can do some, you know, lake activities and I used to golf. I’m trying to get back into it, but my achilles physical therapy is going to be important to get to that point again. And, you know, I do, I don’t do a lot of reading during the year, most of it’s related to endometriosis and just staying on top of what’s the most recent stuff.
But when I go away, I like to read Tom Clancy novels, and it’s a little distraction from what I normally do. My wife is very adamant about me not doing anything work related when I go away. Fortunately, unfortunately, I guess I just don’t get enough days away. But as I get older, I’m trying to remedy that.
Dr. Ginger Garner: Well, and ironically, you’re here recording this interview, which by the way, we’ll be out in March, which is Endometriosis Awareness Month. I just want to thank you for taking the time, talking about what we do for fun, out of your schedule. You’ve been busy all day long, and then you’re sitting down to do this interview. That effort and generosity is not lost on me. I deeply appreciate that. To that end, I have one more question, and that is, can we have you back for a part two?
1:00:36 Dr. Ken Sinervo: Absolutely. It doesn’t sound like we got through very many of your questions because I have to go on because I’m just such a big advocate and I just have so much that I want to share, that I want to share more.
1:00:51 Dr. Ginger Garner: Absolutely. Well, I have the questions. We want to talk about biomarkers and non-invasive diagnostics and more thoracic endo so that we can get the word out there. So that people, women don’t have to wait a decade to find you and other amazing surgeons who work alongside you.
So thank you, Dr. Sinervo, on multiple levels for being here. I can cry if I let myself right now, but I just want to tell you before we hang up, just how wonderful I’m doing in the last, this is almost five months now, and all of the pain that would leave me on the floor is absolutely gone.
1:01:40 Dr. Ken Sinervo: Yeah, it’s amazing. It’s like a magic wand sometimes that, you know, even the day after surgery, the pain that you’re having for years and years and years is finally gone. And it’s like a weight’s been lifted off you.
1:01:53 Dr. Ginger Garner: So yeah, the post-op pain is like, oh, that’s I can handle that because the other pain is far worse than just a regular post-op pain. And of course I just want to tell everybody I’m diligently working through my own pelvic PT as a pelvic PT, because we can’t forget that little piece either. And, um, yeah, so questions, concerns, anything that you have, don’t hesitate to reach out and we will help you get, uh, the help that you need. Thank you so much.
1:02:21 Dr. Ken Sinervo: Thank you. I appreciate it so much.
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