Why is it so hard to get endocare? I think I said, why is it so darn hard to get endocare? And just really valuable pieces of information like that. But for those of you who are just jumping in here to part two, Dr. Ken Sinervo is an amazing, renowned gynecologic surgeon. He is the medical director of Center for Endometriosis Care. He is a specialist in laparoscopic excision of endometriosis.

and he’s dedicated to advanced surgical techniques for pelvic pain. He is a prolific author, an amazing speaker. He’s a leader in endometriosis. And so I just want to say thank you for coming back for part two. And welcome, welcome, welcome. 

Dr. Ken Sinervo, MD (01:09)

Thank you for having me.

Dr. Ginger Garner:

For those of you who haven’t listened to part one, you will know that Dr. Sinervo is my personal hero and the person who has done so much for me and my journey.

with endometriosis and it’s an amazing transformation. We are going to put contact information in the show notes. So don’t miss that. And we’ll go over some contact info at the end, but let’s dive in. So my first question is just, we’re just gonna dive deep on the very first question.

And then I have a lot of questions about thoracic endometriosis because I don’t think enough people know about it and you are the person to talk about that. But the first question I want to ask is kind of futuristic a little bit and that is can we talk a little bit about emerging theories on biomarkers and non-invasive diagnosis?

Dr. Ken Sinervo, MD (02:05)

Yeah, so, you know, that’s kind of been one of the holy grails of how to, you know, diagnose endo in a non-invasive manner. Okay. So if there was a blood test that we could do or an endometrial biopsy that showed differences between patients who have or don’t have endo, that would be a much easier way than to have to do a laparoscopy. But, you know, I think ultimately in the right hands,

You know, just by listening to a patient, you can have a very high likelihood of making that diagnosis. And by far the most common cause of pelvic pain in patients is endometriosis. Assuming you can kind of cross out those things that emergency room docs always have to rule out like, you know, sexually transmitted diseases or ectopic pregnancy or some other problem with a pregnancy. Really by far the most common cause of chronic pain is endometriosis by far.

Dr. Ginger Garner PT, DPT (03:09)

Do you think that it’s one little question before you jump into the next piece, do you think, because we always hear one in 10, one in 10, what do you think about that statistic in terms of where we are right now?

Dr. Ken Sinervo, MD (03:22)

Well, I think it’s reasonably accurate, you know, anywhere from one in 7 % to 10%. You know, and there are probably a lot of patients who are asymptomatic. You know, today I had a patient who came in, she had, you know, presented for infertility and, you know, she had had bilateral endometriomas and really didn’t have a lot of symptoms. 

So 10 or 15 % of patients may be asymptomatic and that kind of probably makes up that, a little bit of a difference between seven and 10%. And so from a diagnostic perspective, there have been multiple studies that have tried to look at new ways of diagnosing endometriosis. And we’ve been involved in some of them. And one of them, we did a study about five years ago where we got samples from the endometriosis and then we also got blood samples.

Then we got samples from the fluid within the pelvis. And then we also got samples from the lining of the uterus. And we sent those all off and the researchers had all these ideas about, know, identifying about 17 different biomarkers that may be helpful in identifying endo. And what they found was the things that they thought were going to be most sensitive to it were actually the ones that were least sensitive. 

It was almost completely reversed from what they thought. And then there’s another newer kind of group of studies that are looking at mRNA. So they can actually measure mRNA in the blood. And if we’re able to get the mRNA pattern for endometriosis in the blood, then they’d be able to do a test, blood test where because the mRNA actually floats around in the blood, they’d be able to do a test for endometriosis that way. 

And that’s, you know, another area that’s kind of being looked at. Historically, you know, we used to look at CA125, which I never felt was a really good marker. And it’s only going to be positive for patients who have severe disease. But the problem with that is, you know, it’s also used to, you know, pick up cancer. And so,

Dr. Ken Sinervo, MD (05:44)

You know, they have an Ova1 test now that looks at four different biomarkers for ovarian cancer. And endometriosis or CA125 is one of those markers. And in patients who have an ovarian cystic mass or an endometrioma, that number is going to be elevated. And often it’s going to make that person come back suspicious for cancer. 

And so really, a lot of times patients will be, you know, misreferred to a gynecologist because their doctor does an ultrasound, finds an ovarian cystic mass, does the blood test to look for, you know, real ovarian cancer and it comes back suspicious for ovarian cancer when in reality in all likelihood it’s going to be endometriosis, the great majority of the time, especially if a patient has any history of, you know, pelvic pain that’s kind of been more longstanding. 

And so, it’s a really poor test in patients who are premenopausal, you know, to try to identify patients who have ovarian cancer. It’s much more sensitive in postmenopausal women for cancer. But again, it’s going to have false positives if there’s an endometrioma involved. And there’s a lot of different characteristics of endometriomas which we can use to determine whether or not they’re likely to be endometriomas. 

You know, is it one cyst or is it multiple cysts? Does it have a thin or a thicker septum? What’s the blood flow into the ovary? Does it have any excrescences or internal growths or external growths or papillations? And does it have the consistency of an endometrioma? And all those things kind of help us differentiate between an ovarian neoplasma or cancer and endometriomas. 

You know, I’ve had probably several thousand endometriomas over the years and I haven’t had one person with ovarian cancer. Okay. So I think we can discriminate those patients who come out with a high CA125 in a fairly uniform manner. 

I’ve referred a couple of patients to a gynecologist and the features were consistent with possibly a borderline tumor and that’s what it came back as. And so still I’m betting a thousand on making the appropriate diagnosis of an endometrioma versus something more sinister. While diagnostic testing is very important, I think we’re still a long ways from that because nothing new on the horizon has come out in the last several years. 

And it would take probably a good five to seven years to validate it before it could be actually put into practice because you have to test it on patients who are controlled, who don’t have endo, and you have to compare it to patients who do have endo. And so that takes a long period of time, even when we were collecting the data for those studies where

I think there were 14 centers and they wanted every center to have at least 20 cases. We had about 60 or 70. We didn’t have any control cases because all of our patients have endo, right? But it took probably a year and a half to two years to collect that data. And then to analyze it is probably another six to 12 months. And if it doesn’t work, then you have to go back to the starting, back to the starting place where you come up with a new idea or theory about how you can try to identify.

Dr. Ginger Garner PT, DPT (09:43)

So to kind of distill that down for the listener and for those outside of healthcare just getting to this and thinking, gosh, what if I do have endo? There’s a big misconception, which we have talked about in previous episodes, a lot of diagnostic testing not being readily adapted in any form to be able to diagnose endometriosis, and I think that’s still a pervasive piece of misinformation out there. So the fact that we can well say that diagnostic tests are not at that point where we’re able to do that.

Do you have anything in your head floating around in that amazing brain of yours that you would like to say this might be the way to go or this might be the future in five, seven or 10 years where we could readily adapt these things for use in general care.

Dr. Ken Sinervo, MD (10:50)

I think the mRNA technology is probably the thing that’s going to be the most successful. Years ago when we were doing amniocenteses, we would have to stick a needle into a pregnant woman’s abdomen, draw some fluid off of there, and then look at the cells to see whether or not there were any abnormalities there. Now they’ve realized that they can actually do a blood test and find fetal cells in the maternal blood system. And so then they can do the testing that way. So that’s something that evolved immensely in the last 20 years. 

And the same sort of idea is probably what’s going to help us with mRNA technology for identifying, you know, there’s many different endometriosis genes and it’s identifying the ones that are probably the most common 10, 15 or 20 that they can do a diagnostic test on where they draw some blood to try and find if there’s any of these mRNA markers in the blood and then ultimately be able to make that diagnosis at a much earlier age.

Dr. Ginger Garner PT, DPT (12:01)

It should be incredible. And to do all that research is needed. And to do that research, we need money. I know that the White House announced back in March, I believe, which is Endo Awareness Month, that there was money coming that way. even Department of Defense, like many of the divisions in the government have mentioned endometriosis and the importance of funding.

Dr. Ken Sinervo, MD (12:09)

Yeah.

Dr. Ginger Garner PT, DPT (12:30)

Let’s talk a little bit about why there is a lack of funding for research in spite of this announcement in March and things that have actually improved even in the last six months or so.

Dr. Ken Sinervo, MD (12:42)

Well, yeah, it’s one of those big enigmas. I don’t know why considering that this is such an important cause of pain in women that it’s not studied more. And I’m not sure if it’s basically the interests of the researchers who are looking into it or if it’s just the ideas of what that research is aimed at, you know.

One, we want to identify, you know, how we can identify endometriosis and then how we can find those patients who have it, preferably at an early age so that we can prevent severe progression of their disease and then have them treated in such a manner that it minimizes recurrences in the future. And so, you know, about, you know, five or seven years ago when Endo What came out that kind of got a little bit of traction in terms of bringing awareness to endometriosis. 

And at that time, there was a little bit of an uptick in funding for endometriosis research. was like $7 million, which is like nothing if you look at the budget for medical science researches in this country. But more recently, by efforts of people like Heather, who works for the Center for Endometriosis Care, and Shannon Cohn, who came up with Behind the Belt, or Below the Belt, and EndoWhat. She’s gotten some influential politicians on board to increase the awareness of endometriosis, and then subsequently get some more funding for it. And I think that that’s ultimately, you know, it’s little baby steps at a time.

So, you know, the funding is supposed to be significantly higher than it was even five years ago. And, you know, yes, if the funding’s there, but then, you know, we have to have the people there to do the research too. And so I think it’s going to take a little while to cultivate that so that we can get the people who are interested and who have good ideas about how to do research in endometriosis kind of work on that pipeline so that we can identify, learn how to identify patients better, maybe look into biomarkers better, look into, there’s many different avenues that we can look into it. 

And there’s also like pharma, which kind of has their own interests and their own agendas in terms of what they are trying to develop. And there really hasn’t been any great new inventions or discoveries in endometriosis over the last 15 or 20 years. The most recent one being Orlissa, which is basically a medication, a neuro medication that will allow, will basically put women into a pseudo menopause. But unfortunately, despite the exciting preliminary studies, they’ve had to actually kind of walk back some of the indications that they were using for the drug. 

They were saying that it helps with pelvic pain that’s not related to menstrual cycles. And they found that that’s not quite as effective for that indication. So they’ve kind of had to walk that back a little bit. Yes, if your main complaint is painful menstrual cycles, when you’re not having a period, of course, you’re going to have some relief. 

But I’ve historically found that a lot of patients are intolerant to even that newer medication because of the side effects. And so if the cure is worse than the disease in some respects, it’s very difficult to kind of keep people on those medications. when, you you can try to treat patients either in a medical fashion,

Dr. Ginger Garner PT, DPT (16:55)

Yeah.

Dr. Ken Sinervo, MD (17:06)

Or where it’s really just a bandaid and it’s just suppressing the disease. It’s not we don’t have anything like a chemotherapeutic agent that actually kills the endo and maybe some somewhere down the road that might be available that maybe picks up on a specific aspect of the genetic makeup of endo or mRNA, mRNA, you know, viruses that can, you know, detect endometriosis and go to those areas and do something to how the the disease multiplies and persists. 

But right now, the best thing that we have is surgical excision of all the endometriosis that’s there to really try to eliminate the disease much like we would a cancer. So, you know, unfortunately, there’s many areas, avenues of research that they could potentially follow. But unfortunately, it really hasn’t snowballed yet into actual practical research.

Dr. Ginger Garner PT, DPT (18:11)

Yeah, it all sounds very hopeful in terms of what has happened in the last year. And you mentioned a couple of important points that are floating around in my head that I’m gonna grab out right now. One was Shannon Cohn, and I just wanna refer you guys back to her episode. And she has a part two, episode two on the podcast to check that out and her amazing work that she has done. 

And also Heather’s podcast episode as well. And there was one more point that you made too about the suppression of putting women into this kind of pseudo menopause, which has its own side effects on top of the drugs side effects, like concerns for osteoporosis. But I think that’s one of the education points that I have to talk with patients about is that they come in having, I guess I’ll put education in quotation marks, having been educated that the drug that they were on was going to help with endo. 

And I think it’s worth repeating that that’s actually not happening. They’re not improving endo. Can you explain that for the listener again one more time? Because if excision is our gold standard, a lot of women out there are still being told that if they’ll just take this drug, or if they’ll just go on birth control, that it’s actually going to help endometriosis.

Dr. Ken Sinervo, MD (19:43)

Yeah, so all of those medications are suppressive. So what they try to do is they try to put the endometriosis in a state of lower activity. so we know that patients who take birth control, we have seen where they’ve actually had progression of their disease from what it was originally to what we often see later on. So and it’s kind of one these.

It’s a double-edged sword where, yes, you might feel a little bit better, but all during that time, your endo’s getting worse. And so what ends up happening is it gives you this false sense of security that, I don’t have to worry about my endo. I’m not getting any worse. But then when you come off of it, your periods and your other symptoms are way worse than they were before because the disease has progressed. 

And often it may not just lead to problems with pain and other side effects and symptoms of that, like bowel symptoms and bladder symptoms and even more devastating effects like injuries to your urinators and kidneys and thoracic endo. But it can also affect fertility significantly as well. so the same thing with Orlissa. Orlissa is basically a medication that just puts the endo into a less active state than it would have been otherwise.

And the problem with birth control can be taken for longer periods of time, but there still can be progression despite that. The problem with Orlissa is that you can only take it for six or 12 months, as indicated. And so what if you’re a young patient who has been given this medication and you take it for a year, then what do do? You may have another 20 or 30 years where you’re going to be riddled with symptoms and still have your disease. 

And you really aren’t any better off than you were before starting that medication, which may have had all these different side effects. And we know that with Lupron, which is another medication, which is an injection that’s taken every month or three months, and it also puts you into menopausal state. There were many side effects, which in complications, which were under reported, including

joint or muscle pain which occurred in 10 or 15 percent of patients, even memory loss in some patients. Dr. Redwine also reported and commented on a lot of the loss of ovarian function where they didn’t have their hormone levels and ovarian function returned to the levels that they were pre-medication. 

That was something that was less consistent, it was very definitive that there were some patients, like maybe 10%, that had significant impairment in their ovarian function. And so, you know, these things are all temporary band-aids, which pale in comparison to what the effects of proper excision are, where you probably have an 85 or 90 % chance of elimination of pain, not requiring any suppression.

And there’s a bit of a caveat there. patients who have endometriomas that are removed may benefit from being on suppressive, you know, birth control to help minimize the risk of recurrence. But again, unfortunately, a lot of patients don’t like the way that birth control may make them feel either because of mood changes or other side effects that they want to try to avoid. And so it is dependent on the surgeon to try to do the best job possible to remove the endometrial almost completely and to try to minimize that risk of recurrence. 

So while you may not be willing to take suppression, if you decide not to do that, then you may have a slightly higher risk of recurrence. But those are adjuncts. I don’t think that they should be replacements for good surgery. They may be helpful, you know, along the way for some patients.

But we don’t routinely place our patients on suppression if it’s non-ovarian disease. And even in the patients who we do it for ovarian disease, often we just do it for three or four months to allow the ovaries to heal. And then it’s up to them whether or not they want to continue on it.

Dr. Ginger Garner PT, DPT (24:20)

Yeah, thank you for making that distinction and diving into that a little bit more. I think that’s really helpful for the listener who may have gotten very different information about how it’s treated and how we should look at endometriosis. You mentioned excision surgery, of course, which is the gold standard and what you absolutely excel at. How do you determine…. 

The story you were just sharing about patients being and women being told that if you go on this drug, then you can avoid surgery and you won’t need surgery. And I know I have sent so many women your way to get surgery for all the women out there and across the world too. 

How do they determine, because I get asked this question all the time, if someone is skilled in excision surgery, many, many surgeons out there claim to do it now. I just got off the phone with someone yesterday on a consult with another situation exactly like that where someone claimed to do and said they did excision, but then goes in and says, well, we couldn’t get all of it. And so…

Dr. Ken Sinervo, MD (25:50)

Yeah, it’s really, you know, it’s kind of a buyer beware, you know, sort of situation where, you know, if you are interested in having good surgery done, you know, most, I hate to, you know, put down other doctors, but the average gynecologist doesn’t do a lot of laparoscopic surgery in the first place. They may do some procedures laparoscopically, there’s been a big push and pressure for them to learn how to do hysterectomies laparoscopically. so, one of the things that has allowed a lot of doctors to be able to do surgery that they couldn’t do before is the robot.

And then it allows some doctors to do excision as well. And that might be okay for some more subtle forms of endometriosis like stage one or two. And with endometriomas, if they do a lot of endometriomas, then they might get better at treating those as well. But then there’s the group of patients who have, know, one of the problems with that is recognizing all the disease as well.

And so I often see patients who’ve had surgery done before and even previous excision done before and found that there’s more disease there just because they often don’t recognize the subtle forms of endometriosis that can be there. so, you know, having done, you know, about 10,000 cases. 

We’ve done research on, you know, what are the subtle forms of endometriosis that if you remove those areas that may not necessarily be classic for endometriosis, but are not normal looking peritoneum or lining within the pelvis, 50 % of those come back positive for endo as well. So you actually increase your yield by about 25%. And so that right off the bat is 25 % less patients who are having a recurrence right there. 

But then it’s just making sure that you are able to remove the full depth of the disease and know what to look for to make sure that you’re not leaving disease behind. You know, what are the features of deeper disease and making sure that you’re, you know, removing that full depth. The robot has been, you know, very helpful in some regards. You know, we, my partner and I, we sometimes, I don’t use the robot myself, but he does.

to some extent, it’s not his primary modality because he prefers to use the laser whenever possible as well. You know, he was a former fellow of mine, so I trained him. So he knows, you know, what we both feel is the best form of treatment because of the effects it has on the tissues. doesn’t cause as much tissue damage as other forms of energy do in the pelvis. 

And so I think that that really has a huge impact on healing and whether or not there’s deeper scarring afterwards, which in and of itself can be a source of pain that I sometimes see when the robot is used extensively. And because of the energy source used with the robot, often there can be increased risk of complications around certain structures like the ureters or the bowel or things like that, because having unpredictability of that energy on those tissues.

You know, it’s recognizing subtle disease. It’s, you know, having enough volume to make you comfortable doing this surgery and having, you know, being that your primary goal of practice. You know, I think those are all important. If you say, I do prolapse surgery and I do hysterectomies and I do endosurgery, okay, you’re know, jack of all trades, but you’re a master of none. Okay. And then there are some doctors out there who predominantly do endometriosis, but then you also have to see whether or not they have a multidisciplinary team. If there’s concerns about other forms of endometriosis, like bowel endometriosis or diaphragmatic endometriosis, which was one of the cases we had today, or bladder endometriosis or ureteral endometriosis, which can affect the kidneys. 

So you really have to have a team available to you. The days of being an uber surgeon, where you could just be a cowboy and try to do all these things yourself. I don’t think medical legally, it’s a good leg to stand on. And I think by bringing in experts in their own field to work with you, you can work as a team to be able to give the patient the best outcome possible. 

I don’t claim to be the best urologic surgeon or the best colorectal doctor. I’m able to get the disease to the point where they’re able to help me. And a lot of the times with patients who have severe disease, the endometriosis surgeon is the one who’s doing all the heavy lifting. We’re the ones who are restoring the anatomy to normal, because we know how the disease works. 

And so if you do a large volume of these cases, you go in and you can completely restore the anatomy to normal and then go about removing all the disease and then bring in other experts if you need them. And that’s really part of knowing how to treat endo is when to bring in those people who are gonna help you and then do everything that is necessary to remove all that disease. 

When it comes to bowel disease, probably 80 % of the time I’m able to address that disease myself without bringing in a colorectal because we’re able to shave the endometriosis off the bowel. And even if we cut into the bowel, we do it enough that we can over-sow the bowel to reinforce it and prevent other complications that can occur if you aren’t comfortable working on those organs. 

But then realizing that having done so many cases involving the bowel, like probably 3,500, where the bowel has been stuck to the back of the uterus and, you know, presenting with an obliterated cul-de-sac, that we’re able to realize when it’s necessary to bring in a colorectal doctor to either remove part of the bowel wall or to remove a section of bowel as well. And just making sure that you don’t miss any other disease because 10 % of those bowel cases could be involving other parts of the bowel too.

And so it’s important to, you know, not just focus on what you see in front of you, but also to remember that there’s other places that this can affect as well and to not overlook those when you’re doing that surgery. And that’s another thing, you know, when we talk about thoracic endo is like, you know, yes, every case that I do, I still look at the diaphragm whether or not they have symptoms, realizing that 20 % of those patients who we may see endo on the diaphragm may progress to have symptoms. And if we didn’t look there,

We don’t know whether or not that might be the cause of their chest pain. But in patients who have a lot of chest symptoms or diaphragmatic symptoms, then we do extra maneuvers to fully evaluate the diaphragm where we’re looking posteriorly. We’re trying to mobilize the liver if we have to. We’re working with a thoracic surgeon depending on how they’re presenting to us. 

Yeah, it’s so important to have a good team around you. And if a doctor doesn’t have that team around you and you expect that there’s bad disease, like endometrioma, which are a marker for more severe disease involving the bowel and other parts of the pelvis, then that’s a bit of a red flag to me right away that they don’t have all the people necessary to treat all your disease.

Dr. Ginger Garner PT, DPT (34:13)

That’s such an important take home message for everyone listening is that multidisciplinary approach and that endometriosis is a systemic experience. It’s not limited to the reproductive organs. And so based on that, that kind of leads me into the next thing that I wanted to talk about, which is,

Obviously, it’s easy to miss something like thoracic endometriosis, especially if, like you were mentioning, a surgeon is doing multiple different types of surgery. They’re not used to doing this and they’re very conservative in their approach or whatever and they’re not getting everything or even looking for thoracic endometriosis. So you’ve touched on some of those symptoms and I know in part one, we touched on the symptoms. So, you know, painful respiration, chest pain, those types of things.

Can you go into a little bit on how thoracic endometriosis is diagnosed and why it’s so easy to miss?

Dr. Ken Sinervo, MD (35:17)

Yeah, well, one of the biggest problems is just the perception that it’s an extremely uncommon thing. OK, so you go to the average gynecologist or someone who does some endometriosis but doesn’t see any thoracic or diaphragmatic cases. They’re like, that’s so uncommon. It’s not going to be there. So they don’t even really pay attention to your concerns. OK, so.

My attitude is, well, if it happens to you, it’s happening to you 100 % of the time, right? And so my perspective is, I’m not going to dismiss you. I’m going to believe you. And I’m going to try to make sure that you either have it or you don’t. And by doing that, we’ll hopefully miss fewer of those cases. 

And realizing that a lot of patients present with chest pain. Okay. And we don’t know whether some of that is referred pain from pelvic floor dysfunction. You know, everything is connected, right? You know, all the muscles that you know, in your pelvis are connected to the spinal muscles and then spinal muscles connect to the chest and, and all that. so patients can present in many different ways just because of their pelvic floor dysfunction. And we,

We know that, you know, even in patients who come to us and have complaints of either shoulder pain, which is a hallmark of diaphragmatic disease, or rib cage pain, which is pain that may be associated with endometriosis on the lower rib cage or maybe even the lower diaphragm. You know, in those patients, when we try to find it, we only find it 35 % of the time. 

Okay. So there’s still a lot of patients who we don’t know why they have their chest pain. Okay. There’s really different ways that endometriosis involving the chest or the diaphragm present. So I kind of touched on one of those with the diaphragmatic endo, either having shoulder blade pain or shoulder pain, because the nerve that innervates the diaphragm or the phrenic nerve is also the nerve that innervates your shoulder and your scapula or your shoulder blade.

And so that kind of fools your body into thinking that that’s where the pain is, that’s where the problem is, when it’s actually lower down in your chest on your diaphragm because that nerve is being irritated. Other patients, you know, they may have shortness of breath because when they take deep breaths, it irritates that nerve. 

And so patients kind of feel this sense of guarding that they can’t take a deep breath because it hurts and so they end up having some shortness of breath because of that potentially. Patients can also present with a little bit of atypical chest pain, but it’s less likely to be endo-related if there are no other findings. Patients can also present with what have been described in the past as catamenial pneumothorax or a collapse of their lung.

When they’re having their menstrual cycle. But that terminology is a bit kind of passe now because when studies have looked at when these patients were having the collapses of their lung that were found to be endometriosis related, almost two thirds of those collapses were occurring outside of the menstrual cycle. So really what we should be calling it is thoracic endometriosis related pneumothorax. Okay, that’s really a much more accurate terminology for having a collapse of your lung that’s related to endometriosis. 

And that’s another reason why patients who have collapses of their lung are probably ignored and misdiagnosed because a thoracic surgeon says, you had a collapse of your lung. OK, you’re tall and thin. And, you know, so maybe you have, you know, just or you’re predisposed to that. But when patients have recurrences of their collapses, because it’s actually endorelated, which is eight times more likely to happen when you have endometriosis to have recurrent collapses compared to someone who just has a spontaneous one. 

And it really should be kind of ringing some alarm bells to that surgeon as well and not just dismissing it as, it’s you’re one of those 5 % who have a recurrent collapse. And then they don’t question the patient about when their collapses are happening or do they have any other menstrual related symptoms or GI symptoms and maybe endometriosis related or back pain or bladder symptoms, things to try to push them in the right direction. 

Really most thoracic surgeons don’t know anything about endo otherwise. And if it doesn’t fit into that nice little diagnostic box that they have, they’re gonna undiagnose it or underdiagnose it a lot.

So we ended up seeing a lot of patients who have had collapses of their lung that have been recurrent despite having thoracoscopies and pleuradices or other procedures to try to get that lung to stick back there because they’re not even really recognizing the cause of it for most of those patients, which are these little fenestrations or holes in the diaphragm that are allowing the the lung to collapse. We’ve had very good success at treating those patients and the recurrence rate. 

While it’s not zero, it’s probably somewhere between five and 10 percent, which is much better than it is in general when these patients don’t even have the doctor recognizing that this is the cause of their problem. Then there’s patients who have what’s called a hemothorax, which is a little less common where they have bloody fluid-filled chest and a partial collapse of their lung. 

And these are predominantly African-American or patients of African descent who have endometriosis that is more severe. And for some reason, their genetics make them present in a different way where this fluid accumulates in the chest. Sometimes they’ll also have fluid in their abdomen and so they’ll accumulate fluid in the abdomen.

They’ll often have those little holes in their diaphragm which allow the fluid to get into the chest as well. And so for them, this can often be the most severe form of endometriosis where they have, you know, significant, require a significant surgery to remove the entire lining of the chest wall because it’s all covered in endometriosis and they may need procedures done on their lung as well to kind of allow it to re-expand. 

But even, despite that we’ve had good results even in those patients with very low occurrence rates in those patients as well. Another presentation is a pulmonary nodule which can occur, probably happens only a few percent of the time where it’s endometriosis related and that part of the lung has to be removed to be able to get rid of that area. And it tends to be patients who have maybe something picked up on an x-ray or less commonly, they may cough up blood. 

And then when they’re worked up, they see a mass in the lung. And then if it’s biopsied, comes back positive for endo. And then you go in and remove it. And they can often have an excellent outcome, assuming it’s not an area that’s too deep into the lung, which makes it more difficult to get to. And then there’s patients who present with hemoptysis, which is coughing up blood, typically when they have their cycle.

And they might tend to be younger patients who often it might get better on their own. And again, it’s very difficult to make that diagnosis because you have to actually look inside the bronchi or the tube that carries the air to the lung and be able to look far enough deeply into the bronchi to be able to sometimes see these lesions. 

Sometimes they can be seen on MRI as well if there’s an area that lights up suspicious for blood in the bronchi that may allow them to kind of diagnose that area a little bit better. But they can be a little bit more difficult to treat as well just because accessing that area is a little harder.

Dr. Ginger Garner PT, DPT (44:08)

Yes, so there’s the most long-term complications and you really have gone over, you kind of answered my next question was, can thoracic endometriosis cause long-term complications, lung function impairment, scarring, that kind of thing? How does it affect respiratory function? But I think you kind of hit on that with all the, with what you just went over. 

And another question that I think hangs out there too is, can thoracic endometriosis then go on to impact fertility in any way?

Dr. Ken Sinervo, MD (44:44)

Well, we don’t really know for sure if thoracic endometriosis directly impacts fertility, but there may be an indirect impact because patients who have thoracic endo usually have pelvic endometriosis too. so not very common to have just endometriosis involving either your chest or the diaphragm. Any studies have shown anywhere from 85 to 88 % to 100 % of cases

thoracic endometriosis or diaphragmatic endometriosis, had pelvic endometriosis. 

I feel that removing all endometriosis in the body is probably beneficial because one, you decrease the amount of inflammation that the body’s producing, which can have impacts on fertility as well. But it’s also more just improving symptoms for those patients as well. Sometimes the diaphragmatic endo can be the most debilitating endo that these patients have.

It often progresses from just pain with their cycles to pain all the time. And so we often see that over time the disease progresses to the point where it’s the one thing that keeps them up at night, know, their shoulder and knee pain, even ear pain for some patients, depending on where it’s involving the nerve. And so, you know, I think that just recognizing that these are the ways that it can present is important.

Dr. Ginger Garner PT, DPT (45:54)

Yeah.

How? Yeah, I see your sweet Labrador in the background. Or one of them.

Dr. Ken Sinervo, MD (46:12)

Yes, they’re playing with all of them are playing with the cat.

Dr. Ginger Garner PT, DPT (46:18)

You know, one question that actually wasn’t even on my radar until we were talking about the incidence of thoracic endo really going along with pelvic endo rather than it just being a loner on its own. But how often do you see endometriosis in the pelvic region then have complications such as just adhesions around the respiratory diaphragm or in that area?

Dr. Ken Sinervo, MD (46:47)

There’s a couple of different reasons for adhesions that we see in that area. One, the patient may have had a procedure done before where there was a lot of bleeding and the blood, when they’re lying down in the recovery area afterwards, the blood may accumulate up near the diaphragm and cause scarring. Endometriosis, less so when it’s causing collapses of the lung.

More so when the endo is more dense and nodular, just involving the diaphragm, there can be a lot of inflammation there. And that can cause adhesions of the diaphragm as well to the liver. And so that can be a little bit more difficult to treat as well. Pelvic disease by itself probably doesn’t cause a lot of adhesions up by the diaphragm, you know, if it’s endo related. Another cause of diaphragmatic adhesions though can be

pelvic infections that sometimes can cause because the infection sometimes may spread to other parts of the body or if there’s actual frank pus from that infection, it can travel to other parts of the body and the liver can get stuck to the diaphragm as well. But endometriosis in the pelvis more often than not doesn’t necessarily cause adhesions between the diaphragm and the liver by itself.

Dr. Ginger Garner PT, DPT (48:02)

And another piece of the puzzle too is in terms of, as a surgeon you go in and what are some of the tail signs that someone has had, excuse me, an ablation and how does that impact your work and what you’re doing when you go in?

Dr. Ken Sinervo, MD (48:31)

Well, you know, so some doctors think that ablation is less scar forming than excision. And that’s not true. We know that we often see that, you know, when they ablate the disease, it causes a significant inflammatory reaction within that area, especially if they’re trying to ablate deeper disease, which is extremely ineffective. And so they end up having much deeper disease there than would have been the case originally and then they’re also may have more adhesions there because of the ablation that was done as well.

And so, you know, both of those things are very important at trying to prevent or trying to identify, you know, these areas that have the endometriosis there. you know, so patients ask, are you able to see where the endometriosis was ablated? And a lot of the time we’re able to because we can see the hallmark signs of that, either the inflammation there or scar tissue there or just the inflammatory reaction that the previous treatment has caused as well.

Dr. Ginger Garner PT, DPT (49:43)

It would seem like that would make your work harder then.

Dr. Ken Sinervo, MD (49:48)

And sometimes, yes, sometimes it could be more difficult because, know, I love operating on patients who’ve never had surgery before. But unfortunately, the average patient has had three or four surgeries by the time they get to us, you know. And it’s really those patients who’ve done a lot of research and just said, well, if I’ve got this disease, I want to go somewhere that’s got a good reputation and that’s got good results. 

And so, yes, we get a lot of those patients, but a lot of them have had three or four surgeries and most of those had been ablations and some have been inadequate excisions as well. so yeah, it does because sometimes it drives the disease deeper because you get an external reaction but then it may not necessarily grow the same way because there might be scarring on the surface and so it kind of drives it deeper into the tissues instead of kind of following the natural pathways of extension.

Dr. Ginger Garner PT, DPT (50:50)

Yeah, and that sounds just, and just seeing some of those images too, it just seems like so much more of a mess to have to go in and clean up when someone has had that done. So that kind of leads us to my final question, which is, well, I have tons and tons, but for now, my question is, swirls all around access. I think that’s at the end of the day, what…

Dr. Ken Sinervo, MD (51:11)

Part three

Dr. Ginger Garner PT, DPT (51:18)

What we all want to see is more advocacy, more awareness, more research, more money and funding for research, more attention to it, less dismissal, less gaslighting, more education for everyone, all the way up and down, you know, in terms of from people to professionals, healthcare professionals. So what is your two cent take or more on improving access to care? What would you like to see happen?

Dr. Ken Sinervo, MD (51:50)

It’s such an important thing that it really has to start at all levels of medical education. know, one, we have to realize that this is, you know, a huge problem affecting 10 % of women. And it has such huge financials, psychosocial, health implications that it really shouldn’t be ignored. And we know that disease can be, you know, diagnosed in a timely fashion. So really what we have to do instead of, you know, we really have to create a mindset in the young doctors and nurse practitioners of that, you know, medical treatment, is really just a bandaid. 

And until we find something better, that excision is the gold standard. And if someone has failed an ablation before, they should be either referred to a doctor that does excision. And ultimately, patients who have more severe disease should be referred to centers of expertise. it’s a matter of doctors recognizing that there are these centers of expertise. A lot of doctors don’t realize that there are gynecologists that devote their entire career to treating endometriosis only. 

And so, we’ll have incredulous doctors who say, there’s no such thing as an endometriosis specialist. And I beg to differ. I think that that’s what I am. And there are other doctors out there that do the same sort of thing that I do. And we have a special subset of knowledge and a skill set that allows us to treat our patients better than the average gynecologist can. And so really we have to, know, if instead of running away from the diagnosis and gaslighting our patients, we should be really being their best advocates and saying, you I think you might have endometriosis. 

I’m not 100 % sure, but you know, so many patients come to me and say, my doctor never even mentioned endometriosis to me. Or I had to do the research myself because my doctors kept blowing me off. You know, the average patient sees 10 doctors before the time they get diagnosed and it’s on average nine or 10 years, which I just find pathetic and unacceptable.

Dr. Ginger Garner PT, DPT (54:39)

Mm-hmm.

Dr. Ken Sinervo, MD (54:45)

And so if we can change the mindset and have patients, or sorry, doctors and healthcare providers say that this might be what’s going on, let’s try and find out if we can get you to the right place to get that diagnosis done and treated in the best manner possible so that one, if we can decrease the number of recurrences that we have, then the entire population does better as a whole.

Because if we can get 85 % of those patients feeling better after one surgery, you know, that leaves us with, you know, 10 or 15 % that may need more specialized care, you know, by a group of doctors that just kind of look into this themselves, you know, that specialize in this and have the appropriate teams to work with. So really it’s a whole mind shift and paradigm shift where we just think of the disease differently.

And instead of running away from it, we embrace it and try to get to the bottom of it sooner so that we can make our patients feel better.

Dr. Ginger Garner PT, DPT (55:51)

Yeah, absolutely. Thank you so much. Thank you so much, Dr. Sinervo, for joining me in this conversation and extension of our first conversation. There’s so much more to be said. I know that I could share so much of my own story and how it’s been going. For those of you listening, I am a pelvic PT and grew up as an orthopedic PT.

And in spite of even my own mother and family members actually having endometriosis, not one healthcare provider in all of my decades of existence ever suggested that it could possibly be endometriosis. In fact, I was just gaslit against that. Nothing was ever biopsied with any surgery. No one paid attention. And so,

The first time I talked to you was really the first time I felt heard. And that’s just this short, you know, the short version of the story. So I just want to give everyone listening just a really big boost of hope that there are amazing people out there. And one of them, just like graced us with an hour of his presence. And I just want to thank you so much.

Dr. Ken Sinervo, MD (57:15)

Well, it’s my pleasure. I do talks at international conferences and I do talks at national conferences, but it’s really talking to patients and making them more aware of their disease and what the possibilities are out there that really drives me. It’s always been about clinical care and the individual patient.

Dr. Ginger Garner PT, DPT (57:46)

Yeah, and the level of, I’m just gonna say y’all, because I’m from the South here, the level of compassion and understanding and listening, careful listening by you, Dr. Sinervo, by your whole staff. The experience is really incredible. I, of course, have many, many patients go down to your office and come back up, and every one of them are just tears in their eyes, just the experience that they had under your care and with your healing touch is amazing. 

So I just could say that a bunch over and over again, but yeah, you’re truly transforming lives every single day. So just thank you for everything that you’re doing and for the help that you also lent to me.

Dr. Ken Sinervo, MD (58:34)

Yeah, well, I just feel very blessed to be able to do this. I don’t see 50 patients a day. Today I saw five, you know, after five or six hours of surgery. And that’s the kind of practice that I dreamt of and I didn’t know that it was possible. And I’m blessed.

Dr. Ginger Garner PT, DPT (58:56)

Thank you so much. You are a blessing.

Dr. Ken Sinervo, MD (59:01)

Thank you.