How to Choose the Right Endometriosis Surgeon (Episode 614)

Full Transcript: Episode 614

This is the Fertility Friday Podcast, Episode number 614.

Lisa: Today I’m sharing essentially a third part of my endometriosis series. February 26 is the month where we’re taking a deep dive into endometriosis. And today I’m sharing my interview with Dr. Ken Sinervo. This interview is mind-blowing for several reasons, but I would say the most important reason is that Dr. Sinervo specializes exclusively in endometriosis.

In today’s episode, you will learn about why it’s essential if you suspect that you might have endometriosis to really consider not just going to any doctor or any surgeon for diagnosis or for treatment, but why you should really seriously consider working only with a surgeon who specializes in endometriosis.

The detail and the experience that Dr. Sinervo shares on today’s episode, I feel it really drives home the difference. If somebody does this all day long every day for years — this is what they do, this is what they specialize in — it’s a whole different level.

One of the things that you’ll hear as you listen to the episode is especially when there are complex or atypical cases. You often think of endometriosis as being located only in the reproductive organs or in that region. But there are many cases where endometriotic lesions find their way to various other parts of the body. And the complexity of those surgeries really can’t be overstated.

Before we jump in, I’ll just share a little bit about Dr. Sinervo. Dr. Ken Sinervo is the medical director of the Center for Endometriosis Care and an award-winning, internationally renowned gynecologic expert specializing in laproendoscopic excision of endometriosis and advanced, minimally invasive gynecologic surgery.

As a native of Ontario, Dr. Ken Sinervo is a fellow of the Royal College of Physicians and Surgeons of Canada, a member of the Canadian Society of Obstetrics and Gynaecology, and many other professional and medical societies. Dr. Sinervo remains extensively involved in both the patient and professional sectors contributing his compassionate expertise to countless endeavors to advance endometriosis advocacy, awareness, collaborative care, and disease education. He has been particularly active in striving for reforms in care and access, and remains a staunch advocate for those with the disease. Without further ado, let’s go ahead and jump into today’s episode with Dr. Sinervo.

Lisa: I’m very excited to be here today with Dr. Ken Sinervo. We were connected by one of our past listeners, actually. Her name is Jenna, and she shared about her experience and difficulties finding a surgeon who was experienced in supporting her with her endometriosis, especially because in her case, her endometriosis was atypical and kind of located in all different areas of her body. I’m really thrilled and excited to welcome you to the show. Welcome to the show, Dr. Sinervo.

Dr. Sinervo: Thank you very much. I’m glad to be here.

Lisa: Well, thanks for being here. I would love to give you an opportunity to share your background, what prompted you to jump into the medical field and then to further specialize into the field of endo.

Dr. Sinervo: Really, when I was in undergraduate school, my friends encouraged me to go to medicine. They thought I had a good disposition and I guess I was kind-hearted and they felt that I would be a good physician. I actually ended up changing my specialization in undergrad and going from kind of a more arts background to medicine.

I did my master’s in fetal physiology and then I did med school in Toronto and then ended up going to do my residency in Calgary. One of the things that I was exposed to very early on in my residency was advanced laparoscopic surgery. I went to a conference with one of the doctors that I was training under, and I saw what was able to be done laparoscopically that I hadn’t been exposed to during my training. And I think that for probably 90 percent of residents, if not more, that’s probably still the case.

It really was a very eye-opening experience for me that showed me that this was a big niche that was important for patients. And then when I came down to do my fellowship in Atlanta, at the time it was the Endometriosis Care Center, and now it’s been changed to the Center for Endometriosis Care. Basically half of the surgeries I did were for endometriosis.

I really developed an interest in it. And I saw the difference in just that one year of training — how patients did after surgery when we excise all the disease that they have, both from a pain perspective and also from a fertility perspective.

Lisa: That’s really interesting to hear the trajectory and how you kind of ended up specializing in the field. I feel also a good place to start would be to share a little bit about endometriosis. Obviously, it’s an area that you specialize in now, but I’m really curious about just your kind of overview about the disease and also what you feel about the average GP’s knowledge base around endo.

Dr. Sinervo: Well, endometriosis is a very common disease affecting about 10% of women. And it can present as early as pre-menarche. We get some patients who are eight or nine or ten who actually present with GI symptoms as the first sign that they might have endometriosis. Of course, we don’t end up seeing them until they’re older, but the youngest patients that I’ve operated on are about 11 years of age because their symptoms are so debilitating — all the way up into their 70s because they never had adequate treatment of their disease and they continue to have pain postmenopausally.

We also see that patients who have hysterectomies can also still have pain because by definition, endometriosis involves endometrial or tissue that’s similar to endometrium growing outside of the uterus. And there are definite biochemical differences and behavioral differences in those tissues. It’s not the same thing as the lining of the uterus growing outside the uterus, and that’s a very important distinction to make because that really refutes one of the main theories of endometriosis being retrograde menstruation.

Typically most patients present with pelvic pain and/or painful periods, but there’s more to it than just pelvic pain and painful periods. They can have painful intercourse. They can have backache, they can have bladder symptoms, they can have bowel symptoms. And even in Jenna’s case, you can have thoracic or chest symptoms, which present as — when it first begins — cyclical chest pain or shoulder blade pain, which evolves into constant chest or shoulder pain in some patients.

It’s very important to understand that it can present in any of these different ways. And you don’t have to have a set pattern for it to be endometriosis. It can present in atypical ways as well. You just have to be very open-minded when you’re seeing your patient for the very first time and listening to their story.

One of the biggest problems that we run into is that there’s a huge delay in diagnosis from the time patients start having symptoms to the time that they’re actually diagnosed with the disease. Typically, 65% of patients probably present within the first six to 12 months of menarche. And then about 20% will present over the next 10 or 20 years. And then 10 or 15% of patients may have little or no symptoms at all, and they present when they come into the doctor and the doctor feels a mass, and then they end up being diagnosed with an endometrioma or an endometriosis cyst, usually involving their ovaries.

That’s another reason that sometimes it can be hard to diagnose — because it can really go through a whole spectrum of presentations for doctors. And I think one of the problems that we have is that patients often get, if they’ve got bladder symptoms, they get sent to urologists, and if they’ve got bowel symptoms, they get sent to gastroenterologists. A significant proportion of those patients get misdiagnosed with problems like interstitial cystitis, which is a problem involving their bladder, or they may get misdiagnosed with IBS or irritable bowel syndrome.

What really happens is they’re left with those other diagnoses that they’re still believing are the main causes of their pain and their problems, when in reality it’s been endometriosis all that time. And one of the biggest problems when that happens is the disease has a chance to progress and it can become more severe in its presentation.

Most patients in their teens are probably stage one or two. But by the time some of those patients get to their late 20s or 30s, they could be stage 4. And some of that’s predetermined genetically because of the kinds of endometriosis that they have. And it varies by racial background as well and maybe environmental background or exposures as well. But the sooner you can diagnose someone, the less likely they’re going to have long-term problems from their disease.

Then really the main state of treatment is how it’s treated. Most patients that I see have already failed three or four medical treatments. They’ve been on birth control or they’ve been on Depo-Provera injections or they’ve been on Nuva Ring or they’ve tried Mirena or even stronger things like Orilissa or Lupron, which kind of put you into pseudomenopause. And they’ve usually had three or four surgeries, although about 25% of my patients have never had a surgery at all.

I’m a little bit of the exception. They’ve already kind of been diagnosed a lot of the time, but there really shouldn’t be any reason why most patients couldn’t be diagnosed within a few years. And if the physicians followed the guidelines and not just trying to manage them medically with every possibility before they even consider taking them to surgery, I think we could have a huge impact on the length of time to diagnosis, which is probably one of the biggest things that we have to deal with.

There was a study in Europe that showed that most patients could be diagnosed if you follow the criteria within two years. Why is it that the diagnosis takes anywhere from seven to 12 years, depending on which study you look at? It tells us that there’s a big gap in what our knowledge is and what we actually practice.

In terms of what’s at the GP level, or a pediatrician, or even at the gynecologic level, most patients — they present to their doctors, and doctors seem to focus on the other things as opposed to the menstrual things that are really driving everything. And when endo has a chance to progress, it not only is a cyclical thing that you have pain with periods or around the time of your period, you now begin having pain throughout the whole month. And then you may have other types of symptoms that you didn’t have before, like Jenna did with her chest pain, or bowel symptoms that have progressed over time as well.

Lisa: Well, there’s so much there. I was taking some notes and I have a lot of follow-up questions. I think potentially the most pertinent for the listener — it was really interesting to hear you just describe the breadth of this issue, the fact that it could be throughout the body, the fact that it affects women pre-menarche, obviously throughout their menstrual cycle years, but also post-menopause, potentially post-hysterectomy. I feel like it’s very eye-opening, I’m sure, to many of our listeners to hear that, because of course, many women who’ve been experiencing endometriosis-related symptoms, maybe later in their lives, they get to the point where they say, okay, I’m going to have a hysterectomy, that’s going to solve the problem. I’m not going to have this issue anymore. It is really interesting to hear that that doesn’t always solve the whole problem.

One of the things that I feel is really just profound but not surprising is your critique of the diagnostic issue. You’re basically saying that if the practitioners followed the diagnostic criteria, more women would be diagnosed within a far shorter period of time — you said something like two years. What is necessary for diagnosis for any practitioners who are listening? And where are the gaps? You went to medical school too, so why is this a thing?

Dr. Sinervo: Yeah, and I don’t understand why there is that big gap there. Even if you look at the ACOG guidelines, which are not great by any means — they encourage a lot of medical treatment, which is basically putting a band-aid on it. They suggest that ablation is an effective treatment and hysterectomy is the definitive treatment. When we know that if patients have a hysterectomy and the ovaries are left behind, 60% of patients will continue to have pain. And even when they have their ovaries removed, 10% of patients will still have pain because the disease itself has not been treated properly.

When you ablate the endometriosis, which is what the great majority of doctors do, the disease comes back 40 to 60% of the time. When you do a hysterectomy and you either ablate the disease or sometimes don’t treat it at all — because your thought process is that the endo is going to dry up and it’s going to go away on its own — it doesn’t. Especially if there’s deeper disease there or there’s scarring that’s contributing to their pain, those things are still going to be drivers of their pain. And then it can affect other things like their pelvic floor, and then they have pelvic floor dysfunction or myofascial disease on top of it.

I think it comes down to the fact that for a lot of gynecologists, they realize that all they can offer is ablation. And then if that fails, they can only do it so many times before they recommend a hysterectomy. From a success perspective, if you know that 40 or 60% of your patients are going to be back knocking on your door for another surgery six months or two years from now, it’s not a very rewarding experience. I think most doctors are highly performing people who expect good results, and if half the time you’re failing your patients, I think that leads to almost something in the back of your mind preventing you from wanting to even go down that road.

I don’t know the other drivers of it, but it’s a very frustrating thing from a patient perspective because so often they end up feeling like they’re gaslit and that they aren’t getting the treatment that they should be getting. If you fail an ablation surgery, I think the next step should be an excisional surgery. And if that means referring them out, I’m hopeful that someday that will be the case.

There are centers of excellence or centers of expertise in endometriosis throughout the country. And there’s a lot of other doctors who do excision, but it’s a matter of finding those doctors. Ultimately what I’ve seen in my practice is other patients drive new patients to come and seek out doctors who do excision because they’ve had good results. And even other physicians who you’ve treated their patients and they’ve gotten good results — especially for someone like myself who has patients who have very advanced disease or atypical disease — then they know they’ve got to send this person to that doctor. But it does take some evolution of your mindset.

One of the concerns that I think a lot of doctors have is like, well, I’m sending this patient to another doctor and I’m losing a patient. My perspective is I want to be a co-partner in their health care. I will look after their pain. I will deal with their endometriosis. And then I want to send them back to their doctor with the understanding that you manage their care otherwise. And if there’s a problem that you run into that you feel you can’t deal with and you feel might be related to their endo or their surgery, I’ll be happy to manage that.

But unfortunately, egos are what they are. And sometimes doctors feel like their toes get stepped on when you go see another specialist, especially if the doctor wasn’t involved in that decision. I think that’s another roadblock to some doctors kind of extending the courtesy to their patients to do that.

Lisa: You mentioned ablation versus excision. Could you share with us and go into a little bit more depth — what are the differences between these? You mentioned the excision surgery and the surgical technique. It sounds like that’s the surgical technique that you use with your patients. Maybe just share with us in the way that we can all understand in layman’s terms. What are the differences in these surgeries?

Dr. Sinervo: Ablation is basically talking about any surgical technique that tries to destroy the endometriosis. You can use electrical energy, you can use what’s called laser vaporization, you can use what’s called a harmonic scalpel, which is something like your sonic care that vibrates at 50,000 cycles per second — a really high frequency oscillation that creates energy that destroys the tissue. There’s different modalities that you can try to destroy the tissue, but the bottom line is that all of them undertreat the disease.

There was a really good study that looked at patients who had endometriosis and then what they did was they either cauterized it or they vaporized it with the laser. And then they cut out those areas that they had treated. And they found that 40 to 60% of those lesions that they treated still had disease.

What we do is we make an incision around all those lesions and we cut underneath them so that we’re getting the full depth of the disease. If you could imagine the analogy of someone cutting a tree right at the earth — basically, that’s what you’re doing. You may have a little bit of penetration under the soil with that ablation technique, but you’re still leaving all the roots of the disease behind. And you know what happens if you leave a little root there. Two or three years later, you see buds of another tree coming in that spot.

I guess I’m the root grinder. I want to get rid of all those roots that are there associated with the disease. And we can do that effectively, I feel, 90 to 95% of the time. Our recurrence rates are 5% or 10% instead of 60% or 40%. That’s a huge difference in terms of the number of patients that need another surgery or how good the patients are going to feel afterwards. And I even think that some of the techniques that they use for ablation actually can make their pain worse because I have seen patients who felt worse after their ablative surgery.

Ultimately, if a patient does come to hysterectomy, that is the main reason I reoperate on patients — not because of their endo, but because they have a uterine source of pain as well. Anywhere from 20 to 40% of women with and without endo, but probably a greater percentage of women with endometriosis, also have something called adenomyosis, which is a painful condition in which the lining of the uterus has started growing into the muscle layer of the uterus. That causes a host of symptoms that are very similar to endometriosis, but when you remove the endo, they’re still having pain.

They’ll have painful periods that may be heavy, maybe clotty, and may cause backache. It may cause pain with intercourse that lasts for hours or days afterwards. And sometimes they may have constant kind of crampy pain all the time. That’s the main reason.

We typically find endometriosis in about 5 or 10% of all the patients that we reoperate on. And this kind of begets a question that some people say — well, if you find it in 5 or 10% of the patients, it may be actually half the patients that we reoperate on have some endo there. It’s usually much less than it was before. But if 80 or 85% of patients don’t need another surgery at all — are they cured?

We don’t like to use the word cure because some doctors feel that you can’t cure endometriosis, and it’s a potentially chronic inflammatory condition that is involving other parts of your body as well, just because of how the genes may influence the disease. But what I look at is clinical recurrence. What percentage of patients do I need to reoperate on and find endometriosis? I still think that it’s a very small percentage of patients that end up having endometriosis that’s a positive pain driver when you excise the disease completely.

Lisa: That is so helpful and very eye-opening. Even just to know about the procedure — it’s obviously very different to destroy the tissue but potentially not remove it, right? The tree analogy is so good, versus actually going for the root.

Dr. Sinervo: Yeah, one other thing is ablative surgery is practically useless in patients who have more advanced disease. If you have deeply infiltrating endometriosis or you have bowel that’s stuck to the back of the uterus or you have endometriomas and a lot of endo on the pelvic sidewalls where those ovaries are stuck to — those things are not going to be helpful at all, because the only way to treat that disease is by deep excision.

I think that even people who do ablation, for the most part, not all of them, will acknowledge that. Unfortunately, they don’t have the skill set to do it. That takes extra training, and it takes a lot more time to basically go in and cut out all the disease than it does to take an instrument and basically rub it over the tissue. That can take maybe five or ten minutes, whereas an excision of the same person might take an hour and a half.

In severe cases, I’ve spent as long as eight or 12 hours removing disease depending on what specialists I’ve had to bring in along the way. I’ve had surgeries where I’ve had four different specialists involved — urologists, colorectal surgeons, thoracic surgeons, hepatobiliary surgeons, which are doctors that work with the liver and the stomach and the pancreas.

You have to have a team of doctors who you work with to be able to do what we call a multidisciplinary approach to the treatment of endometriosis so that we have all the subspecialties involved in treating their disease so we can try to do all that’s necessary in one surgery and prevent them the additional morbidity of multiple surgeries.

Lisa: I feel like that really puts it into context. It made me think of — I don’t have it in front of me — there was a study that I was reading and it made a loose comparison to the way that endo kind of sets up shop, creates its own blood source and all of these things in the body. It made a loose comparison to cancer — like benign in the sense that, forgive me if I’m saying it incorrectly, but I was reading this paper and it was talking about how these lesions are like parasitic because they set up shop and they have their own blood source and they kind of are really there, like you said with the root. They live there now. From what you’re saying, to have to involve all these specialists if it’s located in this area — you have to excise it, but you also have to kind of protect that tissue and all that. I don’t know if you want to go into that a little bit more. It’s just so complex when you think about it.

Dr. Sinervo: Yeah. Getting to the real mechanisms of how endometriosis causes pain or how endometriosis gets started — I still think we’re in our infancy in that, or maybe we’re in our puberty level — but we still have a lot to learn.

When the endometriosis invades into other tissues, it can go all the way through the bladder wall. To get rid of that disease you have to cut out that lesion and then you have to repair it. If it’s involving the bowel, the only way to sometimes get rid of that disease is by cutting out that piece of bowel and then reconnecting it. The same thing when it’s on the diaphragm — we have to go in and cut out that part of the diaphragm that’s involved, and/or remove all the tissue that’s lining the lung that’s involved with the disease as well.

It’s really interesting that endometriosis has the ability to turn on genes that release endothelial growth factor, which is what creates blood vessels, and other growth factors that create their own nerves. And these are the mechanisms by which endo has the ability to kind of stake claim to a certain area and cause pain or cause other symptoms like pain with intercourse if the deep lesions are behind the cervix or on the ligaments behind the uterus and involve the ovaries.

It is very interesting. If you look at a paper that looks at the mechanism of action of endometriosis, you’ll probably run into dozens, if not maybe a hundred different factors that may be part of it. And to wrap your head around that takes a lot of thought. It’s way beyond my level of comprehension. I’m a surgeon. I cut stuff out. I restore the anatomy to normal. I get patients out of pain and I hopefully get them pregnant as well when they’re able to.

I really acknowledge and appreciate everything that researchers do, but there’s still so much in our knowledge that’s lacking that it’s going to take a long time before we really get to the bottom of it. And hopefully someday they’ll be able to have some other interventions that may be genetically based that may prevent the need for surgery that we do that is so all-encompassing and potentially complicated just because of the nature of having to do a bowel resection or things like that.

Lisa: I think that it’s refreshing to hear you iterate how little we do know about it, how much more there is to learn. I wanted to go back to something that you had mentioned a bit ago. You had mentioned the common theory of retrograde menstruation. I am an author, I’ve written a couple of books and I spend a lot of time reading research in that endeavor. I have read a variety of papers and they always kind of state that because that seems to be like the going theory for why this happens. Could you explain what retrograde menstruation is and kind of just tell us a little bit about why that has been theorized to be the cause and obviously your take on it?

Dr. Sinervo: Retrograde menstruation basically talks about the uterus having some uterine activity and tubal activity that allows the tubes to have live endometrial cells come out the ends of the fallopian tubes and then they’re deposited in the pelvis. And then what happens is those live cells have the ability to implant into the peritoneum and basically be the beginnings of endometriosis.

80 or 90% of women menstruate out the ends of their tubes. So why do only 10% of women get endometriosis? There must be some genetic predisposition there, if that were the case, or some immunologic problem in those patients that allows the endometrium to get a foothold.

But the problem with that is — okay, so I do a surgery and I excise all the disease on that patient, and 90% of the time, they don’t get endo again. Why is that? If that’s the theory, it should happen all the time in those patients again until you do a hysterectomy. But then they still have endo after their hysterectomy.

Most of the recurrences that we see are actually not true recurrences. What we see is persistence of disease. When someone goes in and ablates endo and they go back to ablate again, it’s almost like you could have taken that first operative report and just photocopied it. Every time it’s the same procedure because they’re treating the disease in all the same locations that they treated before. It’s not like it’s new disease that got there. They just never treated it properly in the first place.

The other thing is, recurrences don’t match up to what the theory suggests. 10% of stillborn fetuses were found to have endometriosis when they were delivered. How do you explain that? That tells us that the disease was laid down embryologically, or the cells that have the ability to become endometriosis were laid down embryologically. And then at some point between the birth and the time they start having periods, the disease gets activated, and then it starts causing symptoms.

That’s why patients with bowel disease have symptoms before they even started having their periods — because it was there before they started having retrograde menstruation.

As well, endometrium does not have the ability to produce estrogen, but endometriosis does. It has the enzyme to produce estrogen from the precursor hormones that are floating around in the body. Endometrium does not. It relies on the brain to release the stimulating hormones to create estrogen and the ovaries to release it into the system through the ovaries. That’s what stimulates the lining of the uterus. Whereas endometriosis can still produce estrogen in its own microenvironment and enough to stimulate it despite us trying to suppress all the estrogen that the body’s making.

Those are kind of the main reasons that I feel refute the retrograde menstruation theory. There may be some exceptions to the rule, but I think that they’re extremely minor exceptions. I feel that the disease is probably multiple different presentations, but I feel the great majority of patients, if not close to 98 or 99%, are because of the disease being laid down embryologically or the precursor cells being allowed to convert into endometriosis. There’s a lot of reasons why retrograde menstruation just doesn’t seem to make sense these days.

Lisa: Well, I got chills when you said the stat that 10% of stillborn fetuses have been found to have endometriosis. And I think when you had first brought up the retrograde menstruation thing, you had also mentioned that women can have endo in all different places. And that kind of seems like — how did the menstrual blood get there? Maybe talk a little bit about the endo that’s located in all these places that I think a lot of people still don’t know that it can be anywhere.

Dr. Sinervo: Yeah. Well, the great majority of endo is within the pelvis. Where it is located is on the ligaments behind the uterus, underneath the ovaries. Sometimes it can be on the bowel, sometimes it can be on the bladder, and sometimes it involves the ovaries. It can also involve the small bowel, which is kind of sitting in the pelvis a lot of the time.

Does the endo, when the bowel is sitting in the pelvis, attach to those areas? Or was it laid down embryologically as well? I don’t know. It can involve the cecum, which is the first part of the large bowel, and the appendix. The appendix can be involved about 20% of the time, the small bowel about 5% of the time, the cecum about 5% of the time. 90% of the endometriosis involving the bowel is involving either the sigmoid colon, which is the first part of the large bowel as it gets into the pelvis, or the rectum.

We often see it in other areas. I’ve seen it in the stomach. I’ve seen it in the pancreas. I’ve seen it on the liver. One of the big parts of my practice — I deal with a lot of patients who have thoracic endo. Our center has probably treated more patients with diaphragmatic and thoracic endometriosis than any other center in the world. We’re close to about a thousand patients for that, which is about a tenth of my practice. And on a yearly basis, it probably makes up about 20% of my practice now.

Again, we don’t know if it’s laid down embryologically. Other doctors that we work with, like Dr. Redwine, he believes it is, even on the diaphragm. Others suggest that there’s a circulation in the abdomen that kind of goes clockwise. The idea of this circulation in the abdomen was based on some studies which since then have kind of been refuted as not being very well done or very accurate. We don’t know how valid the idea of this peritoneal circulation is.

That would definitely explain some of why more people have disease on the right side of their diaphragm than on the left — about 95% of patients have disease on the right side and about 2% on the left and maybe 2 or 3% on both.

Disease involving the diaphragm typically presents atypically. Some patients will just have chest pain. They’ll either have pain that’s close to their rib cage or goes to their shoulder because the nerves that innervate the diaphragm also are the same nerves that are the nerve roots that innervate your shoulder and your shoulder blade. It does this thing that we call referred pain. Even though the pain is actually being driven by something on the diaphragm, for reasons that they share the same wiring, it causes pain in the shoulder.

People don’t make the association — well, if the disease is on my diaphragm, why does it hurt over here? Unfortunately, that’s one of the reasons it takes so long for patients to get diagnosed — because they’ll do everything to try and treat their shoulder. They’ll have shoulder surgery. They’ll have all sorts of physical therapy up there. They’ll have injections, massage, ultrasound — all these different modalities of treatment up there when, in fact, the problem was their diaphragm.

Unless you can pick up that association that maybe it started out menstrually related to their cycle and then evolved over time to be more constant. Then other patients may present with a collapsed lung. In those patients, instead of seeing deep nodular disease, which means basically thicker disease involving the diaphragm, they actually have endo that causes little holes in their diaphragm. Those holes go through a process of repair every month. But if it didn’t get repaired enough, it ruptures and it allows the lung to leak and they get a collapsed lung.

They may have endometriosis on the surface of their lung that can cause collapses, or they may have blood in their chest that accumulates every month and they have to get that blood drained. And over time, it causes endometriosis to line the entire chest wall. We have to remove the entire lining of the chest wall. Sometimes we have to remove the outer layer of the lung itself because it’s been so involved and it doesn’t want to expand anymore.

Sometimes we have to do what’s called a decortication. We basically have to recognize that the disease has been found in every organ of the body, including the brain, including the nose, including the eye, and in joints. It’s just a matter of trying to recognize that these could be possible because of endometriosis.

Things in the brain and the nose and the eye are extremely rare — kind of like one in a million. But sciatic disease is something that we run into as well. Patients will have leg pain that goes along the back of their buttocks, down the back of their leg, all the way down to their foot. Some of those will even have weakening of their calf, and one calf will be smaller than the other because the nerves are not functioning normally and not able to allow those muscles to work anymore.

In those cases, you have to actually go to a specialist who does neuropelveology that understands the pelvic nerves and can go in there and remove that disease completely off the sciatic nerve. It’s just a matter of realizing how broad the level of disease can be and asking the right questions of patients too, because if the patient comes in and they’ve got pelvic endo, but they forget to be asked by the doctor — do you have any chest pain? And the patient will be like, oh, yeah, I do. I didn’t know that could be because of endo.

A lot of doctors won’t do that. That’s part of our regular questioning. We want to try to make sure we’re not missing disease in locations that we want to be able to identify beforehand so that we could have everyone there who needs to be there.

Lisa: Well, that brings me to one of the questions I wanted to ask you. When I reflect back on the interview that I did with Jenna, one of the things that she talked about was that at some point in her journey to you, she actually did undergo a laparoscopic procedure. And if I remember correctly, either they didn’t diagnose any or they diagnosed some but not others. She had said something about — even as somebody who is not an endo surgeon, I would have thought that if somebody finally gets up that courage to get that laparoscopic procedure to see about the diagnosis — so many women are just nervous to even get that procedure done for diagnostic purposes — you kind of think that if there’s endo there, it’s going to be picked up. Did you want to talk a little bit about that? And from a practical standpoint, from a patient perspective, what do you do to optimize that chance that if there is endo, it’s going to be correctly diagnosed?

Dr. Sinervo: Yeah. Most gynecologists perform a handful of laparoscopies a year. Pelvic pain and going to the gynecologist because of pain makes up about 15% of the consults that a gynecologist sees in their practice. They may or may not have a lot of experience or a lot of volume to know all the different appearances of endo.

They may go in there and they may not use all the tools that we use. We use a rectal probe — we put a special probe in the rectum that tells us whether there’s scarring there that you just can’t see from the surface, or an obstruction there that prevents the probe from going in the places it needs to be able to go. Or they may not recognize subtle disease.

We did a study years ago where we looked at areas that we thought for sure were endo and then we looked at areas that just didn’t look like normal peritoneum or the lining inside the abdomen and pelvis. We removed the areas that we thought were endo and 90% of the time it came back positive for endo. And then we removed the areas that just looked what we call atypical. And half of those still came back positive for endo.

That makes up a quarter of the yield that we had. Right off the bat, I think a lot of doctors are missing at least 25% of the disease. But in someone like Jenna, who did have significant disease — I just can’t explain that. It’s really hard to explain.

Diaphragmatic disease is commonly missed just because they don’t even look up there. Or if they do, they’re looking from far away. They don’t get their instrument there to push down on the liver or they don’t put an additional port right below the rib cage so they can look with a special scope all the way to the very back of the diaphragm. And then if they see it, they don’t know what to do with it. Who do I send them to? Do I send them to a thoracic surgeon? Well, they don’t operate under the diaphragm. They operate above the diaphragm. They sometimes don’t know how to approach it.

Often patients like Jenna are left kind of not knowing where to go. Personally, I applaud patients who do the research. And you always want to trust your doctor. You always want to think that your doctor knows everything and is good at everything. But you can be the jack of all trades, but the master of none, especially when it comes to endometriosis.

One of the things that my previous partner, who’s now retired, who started the center — he said, you don’t want to put yourself out as a specialist of everything. I don’t want to be a pelvic floor surgeon. I don’t want to do bladder suspensions and I don’t want to do other kinds of things. I just want to be that guy who’s known for doing endometriosis.

I think it behooves patients whenever possible to seek out someone who specializes in this and not just an advanced or a minimally invasive gynecologic surgeon. A lot of them have very little exposure to endometriosis or advanced endometriosis. You want to know that this is the only thing they do if you want to maximize the chances of getting the best treatment possible.

A lot of those minimally invasive gynecologists are going to be able to do it, but some don’t, or they didn’t have advanced training. And that’s especially true when they have advanced disease — disease that’s involving the bladder or reimplanting ureters or having to do bowel resections. Because they often don’t have teams that work with them.

When you’re seeking out a doctor, you want to know: if you have bowel symptoms, do they do bowel resections? Do they work with a colorectal doctor? Do they have a urologist if your ureter is blocked? Do they have a urologist who can reimplant that ureter? If you’ve got problems with infertility, how many patients that they see have infertility with endometriosis or endometriomas? Will they be removing an ovary if they see an endometrioma? It’s almost never needed when you’re trying to be conservative with a patient.

Unfortunately, sometimes doctors get in over their heads and they don’t know what to do. They end up having to take out an ovary either because they get into problems with bleeding, or they feel the only way for them to remove that cyst is by removing the entire ovary. If they have done endo on the bowel, how many bowel resections have they done? These are important things. I’ve done about a thousand.

Those are the things that you want to know as a patient. We have an article on our website that goes over the questions that you want to ask your doctor if you are trying to find the right doctor for you.

There’s a lot of good surgeons out there that are very good surgically. But they may not have either the experience or the backup — the team that you need to be able to address all the different problems that you may run into with endometriosis. There are very few solo surgeons anymore. 30 years ago, you could get away with being a cowboy and operating and saying, I’ll do this and I’ll do that. Medico-legally, I don’t think you can do that anymore.

I think you really need to have that team around you. And if you find that team and you’re happy with your doctor and they make you feel good and reassured, then I think that’s a good fit. And if you have any reservations or concerns, you might have to move on. It’s like dating. You might not find the right person the first time. You sometimes have to keep interviewing people until you find the right one.

Lisa: I mean, I feel like this is very essential information. I have a couple of questions around that. But one thing I just want to say — I was thinking of questions to ask, and I was thinking, oh, do I ask how many hours in the OR the doctor has had, or the percentage of endo cases in their practice? And then you said it’s the only thing they do — emphasizing that you really want somebody where this is their focus. And that is one of my biggest takeaways from the episode, just from our interview, because when you go into the depth in terms of how serious the disease is and all the different areas that it can invade, and the complexity of the surgical procedure and having to involve other specialists because it’s in the bladder, because it’s in the colon, because it’s in the thoracic region — it really emphasizes how significant and serious this disease can be and how we really shouldn’t be flippant and cavalier.

The one question I had was, does this apply to diagnostics? Because I’ve heard a lot of women go into that laparoscopic procedure, and the doctor says, well, if I see something, I’ll just grab it then. Does this apply to diagnostics as well? Should you be going straight to that specialized surgeon for a diagnosis in the first place?

Dr. Sinervo: Well, I think, yes, often, because if you suspect endometriosis — how many of those patients have gone to their doctor, and their doctor says, no, you don’t have endo, you’re too young, or you don’t have endo, you haven’t had babies yet, or whatever reason they use to dissuade you from having surgery?

Or if you’ve got bowel disease — oh, well, you’re going to wake up with a colostomy, you’re going to have a bag for the rest of your life. I’ve done 10,000 surgeries, and I’ve done probably around 30,000 to 40,000 hours in the operating room. I’ve done a thousand bowel resections, and I have yet to have a patient who has had a permanent colostomy.

Have I had a few that have had temporary ones? Yes, that goes with the territory. Whenever you cut bowel and you reconnect it, a certain percentage you’re not going to heal properly, even though you do everything technically perfectly. It’s just something — there’s a problem with the blood supply there, it doesn’t heal perfectly all the way around. There’s a very, very small percentage that have complications because of that.

But some doctors will try to dissuade you from having a life-correcting surgery that gives you your life back because they have no experience in it. Because they’re ignorant on that fact, they might not know how to counsel a patient. All too often I see either on Facebook pages where the doctor said this or that, which is not true, to dissuade their patients from having the appropriate surgery.

If you’re able to see a specialist, by all means, do that. Most of my patients — 85% — come from other states or countries. What we do is we have a process where they send in their records. They fill out online forms and they do a narrative that tells me their story. And we look at their operative reports if they’ve had any, or any other investigations that have been done. And then we come up with a plan.

If it’s someone who I see in the office, I have the advantage of examining them. But the exam, most of the time, doesn’t make that much of a difference in terms of what our potential plan is. I have a lot of patients who present with a lot of bowel symptoms, and I’ll say, okay, well, you might need a bowel resection. Let’s do an MRI to see if they see any endo on your bowel. And unfortunately, some of the MRIs are not read well, and they miss disease. But we have ways to work around that.

We have the colorectal surgeons available if we need them in a pinch. Most of the time, we already know beforehand that we’ll need them. We’ll be able to do the appropriate surgery.

When it comes to making that diagnosis — did they even know what to look for on an ultrasound sometimes? Myself and my partner and a lot of the other fellows that I’ve trained over the years — they know how to do an ultrasound to look for those signs that there could be disease involving the vagina or the rectum or deeper disease involving the ligaments behind the uterus and/or looking for nodules on the bladder. They’ve already been trained in how to do that. Or they know how to read an MRI properly to see if there’s disease on that MRI that the radiologist might have missed.

Those things might not be something that the average gynecologist has that are important in making that diagnosis. I think that you’re probably going to have an earlier diagnosis and also have somewhat better care, I hope, by seeing someone who just does endometriosis.

Lisa: Well, as we start wrapping up today, I would love to invite you to share a little bit more information about your clinic, your practice, for anybody who’s either in Atlanta or obviously around the world. And also, I’ll connect with you once we’re finished because I would love to share that article that you mentioned on the show notes page for the listeners to be able to access the common questions to ask.

Dr. Sinervo: Yeah. If you want to learn more, you can either Google Dr. Ken Sinervo or you can go to centerforendo.com. That’s our primary website. There’s a ton of information there. There’s probably three or 400 pages of articles about different things related to endo. I think it’s probably one of the best informational websites out there.

A lot of patients go there with the intent of finding a specialist, but we just want to educate patients as well so that they go in to meeting a doctor with their eyes wide open and know the appropriate things to ask their doctor so that they can get the best person available for them. Centerforendo.com, and we look forward to helping anyone who’s interested.

Lisa: Well, Dr. Sinervo, this conversation has just been very eye-opening, and I feel it’s going to be a blessing to — I just can’t even imagine how many listeners. I just want to thank you for being here today, of course, for taking the time. But also for the work that you do. I’m sure that you know how important it is. I can’t imagine the stories that you’ve heard in your practice. I’m sure you already know how needed this work is and just how difficult it is for women to find good care. Thank you for that as well.

Dr. Sinervo: Well, thank you. The reward for me is seeing those patients doing better or getting pregnant or those types of things. And that’s what really drives us to keep going.

Lisa: Of course. Well, thank you again. Thank you so much.

Lisa: I hope that you enjoyed today’s episode with Dr. Sinervo as much as I did. It was really fascinating to have a deep dive into endometriosis and to have a better understanding of the complexity of this issue when you need surgery.

As I said at the top, it really enforces the importance of not only seeking qualified support, but really considering finding a surgeon — if this is the way you’re planning to go or if you’re considering surgery or even if you’re just considering having a laparoscopic procedure done to determine if you have a diagnosis or to confirm the diagnosis. It makes such a big difference to consider finding a surgeon who specializes specifically in endometriosis.

Of course, that’s not always easy depending on where you live. But if we think back to Jenna’s episode, you don’t want to take all the effort to go through a procedure like that, only to have to have it done again or multiple times. While it can feel very inconvenient and expensive to take that extra step to find a surgeon who specializes in the condition, it can save you years of struggle and heartache in the future. It’s certainly worth considering.

With that said, I hope you have a wonderful week, weekend, whenever you are tuning into the show. And of course, as always, until next time, be well and happy charting.