Decoding Endometriosis Surgery: Dr. Nick Fogelson on Advanced Techniques and Neuropelviology

Speaker 1:
0:03

Welcome to Indobattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, elana, and this is Indobattery charging our lives when endometriosis drains us.

Speaker 1:
0:42

Welcome back to Indobattery. Grab your cup of coffee or your cup of tea and join my guest host, chelsea and I at the table as we welcome Dr Nick Fogelsen of Northwest Endometriosis and Pelvic Surgery. Dr Nick Fogelsen is a board-certified fellowship-trained gynecologist and is a minimally invasive gynecological endometriosis surgeon in Portland, oregon and the founder of Northwest Endometriosis and Pelvic Surgery. Thank you, dr Fogelsen, for joining us today. I have Chelsea along with me because this topic in particular is really important to her, because she's dealt with a lot of what we are going to talk about today. So thank you so much for taking the time and joining us. I appreciate it.

Speaker 2:
1:25

Absolutely. Thank you for inviting me.

Speaker 3:
1:27

Yes, yes, I followed you for years. I think that the way that you practice is a little bit different than what we see with your typical excision surgeon. So I wanted to see if we could start by just discussing the education that you have and the different types of trainings that you've received.

Speaker 2:
1:46

Well, I mean some of it is similar to what other subspecialists. There's different pathways to becoming kind of an endometriosis surgeon. Everyone has had some sort of advanced surgical training, like there's very few excision surgeons that were just general OBGYNs and started and got into this although that's how red wine started. But these days most people have done like a mentally invasive surgery fellowship and had some other experience. So my pathway is actually I did a general OBGYN residency and then I was out in practice for about six years as a general OBGYN in academic practice I worked for two different universities teaching and I did a lot of surgery but my skills at that point were, I think, good for a general OBGYN but nowhere near where it is now. And then I decided to go back and do a fellowship and I actually did a year of what was effectively an oncology fellowship at Emory University. They have kind of an advanced pelvic surgery fellowship but it's within the division of GYN oncology and they don't have an oncology official fellowship, so that that fellow is really kind of an oncology fellow and so oncologic surgery is really kind of the most difficult blood and guts kind of surgery in gynecologic surgery very advanced anatomy, advanced techniques, and it kind of turns out that endometriosis surgery, done well, is very much like oncologic surgery because we're really trying to be very, very radical about removing all the disease just like you would be really radical removing all ovarian cancer or endometrial cancer when it's not going to be treated by other methods like chemotherapy or radiation. But your general OBGYN doesn't get the kind of training the oncologists have, particularly in anatomy and kind of the deep retroperitoneal anatomy where back behind the skin and the pelvis where the big arteries and nerves and vessels are A lot of times general OBGYNs. In that training you get kind of some education in that but usually not enough that you're really comfortable doing surgeries in that area that are very complex and so in gynecologic oncology you do that all the time.

Speaker 2:
3:45

So I spent a year doing that, did a lot of cancer surgery and a lot of it was open cancer surgery as opposed to being laparoscopic. But then I went on and I was at Emory for another four years where I was sort of a minimally invasive gynecologist surgeon and at that point I started kind of my path of really being very, very interested in endometriosis. And a lot of why I did that fellowship was I wanted to do endometriosis and I thought that was a really good way to learn the skills I needed to learn and so I did more and more endo while I was at Emory and it was a really good experience because I had such a wide variety of colleagues who were also very, very good surgeons and urologists and colorectal surgeons and cancer surgeons and they were all very welcoming to me and great collegial relationships. So I learned how to do bowel sections and learn how to do really gnarly retroperitoneal things. A renal surgeon and I did some like crazy cancer that we removed through the vena cava. You know it was just like insane stuff.

Speaker 2:
4:39

Wow, I'm not insisting in that because I'm not the primary surgeon in that kind of thing, but I got a lot of experiences that were well outside of what most gynecologists would do and even people that had done minimally invasive gynecologists, because I spent a lot of my kind of free time just in the operating room with people doing cool stuff. Like if I had an afternoon off, I was just kind of a surgery nerd and a dork and I mean I would do, I go and do whatever, or do I just could say, oh, what's in the operating room? It's all somebody's doing, that I was cool, okay, I'll go and hey, can I come scrubbing on this and then say sure, so. So now, honestly, like when you're a medical student, people do that, but at that point in your career, most people aren't doing that.

Speaker 2:
5:18

Most people are going and you know, I don't know doing something else for their life. So so that's a little unusual. So I did a lot of. I still learned a lot of different stuff. And then I left Emory and got into a private practice and I became increasingly focused in endometriosis and then eventually started my own practice that I have now with just Northwest endometriosis and pelvic surgery where we're just exclusively doing endometriosis and complex pelvic pain. And when I was at Emory there was a lecture by a guy named Nusselli Olemos who is one of the early neuro-palveology people. He trained directly under Mark Posseover, who is the founder of this neuro-palveology that we can talk about a little bit and I found that really fascinating. And when I find something fascinating that I don't know about I go like I got to know about that. That seems cool.

Speaker 2:
6:02

And so I started the training program with Mark Posseover Institute of Neuro-Palveology in Zurich, switzerland, and it was interesting like I started all the didactic study for that right kind of into the teeth of the pandemic. I started it about a year before the pandemic. It was really heady difficult stuff. Basically, what neuro-palveology is is taking everything that you probably learned in medical school about neurology and then forgot and kind of relearning it and then applying it to pelvic pain and sometimes to other kinds of pain as well. It's nothing new. What it is is it's everything that every doctor learned and they had to take a test and then they pulled the chute and jumped it so they could put something else in there for a while, like when you're in medical school you're just learning so much stuff and you it's like you're trying to stuff your brain with hematology and then when you take that test, then you got to kind of dump a bunch of that and stuff it with something else.

Speaker 2:
6:54

And then if you become a hematologist, you learn it again, and so neuro-palveology is not an invention as much as it's a application of neurology peripheral nerve neurology into pelvic pain in a way that makes sense and opens up some new areas on how to treat some kinds of pelvic pain. I'm an endometriosis surgeon but I try to think of myself as a pelvic surgeon that addresses a lot of complex pelvic issues, and I do think that some endometriosis surgeons just kind of think like, well, I'm just going to remove all the endometriosis, and if that doesn't work, well then I don't know what to do, whereas I'm definitely looking at it a little. I mean, I don't know what's in other people's brains, I don't know what other people think, but I definitely don't go into it as saying, well, all problems are endometriosis, because not all problems are endometriosis and in fact some people have endometriosis but that isn't a problem or it is only a part of their problem. So I did, I did all this didactic stuff and then I was going to go to Zurich and finish, do more of my sort of in-person neuro-palveology training in Zurich with Mark Posober, and then the pandemic happened and so it was like impossible to do that, but I pretty much slowly did a lot of these surgeries myself, did some cadaver work.

Speaker 2:
8:05

I bought a few cadavers and did some dissections. I mean, this is like mad scientist shit. Like you know, I'll say well, I don't want to do this on a live person right away. So I went and did some cadaver surgeries and then slowly started to do some neuro-palveologic surgeries. But I couldn't believe.

Speaker 2:
8:16

I trained לכ and human %a closed for a very short period of time and, yeah, definitely leave to do that again, let's do some on-m у interfere, aerobic therapy, follow-up therapy, and when you're starting to do things that you don't really know how to do, that well and inevitably you go as far into it as you can until you feel like you're you've gone as far as you safely can because you don't want to endanger the patient, right, you know. So it started out not doing neuro-palveology surgeries, necessarily very well, I thought. But I mean that was the pathway to getting there, right? So I spent a couple years sort of teaching myself in a way, because the more formal training wasn't available, and then eventually I was able to go to Zurich and do the next level of neuro-palveology training. So I'm certified in what they call level two neuro-palveology, and did a lot of cadaver work with Dr Posova and a lot of lectures with Dr Posova which are kind of mind blowing.

Speaker 1:
9:00

And so now I do that.

Speaker 2:
9:01

So neuro-palveology it's interesting, like some of it is sciatic endometriosis. I mean, I think a lot of people when they have sciatic pain they say, oh, I have sciatic endometriosis. But it's actually quite rare. I've only seen a couple cases of true sciatic endometriosis in my career and people come to me for these things, and so actually a lot of cyclic nerve pains are vascular entrapments where you have a very big network of veins in the pelvis and there can be certain configurations of veins that will create compressions on nerves. And so there are a fair number of people that have cyclic nerve pains that actually come from just unusual anatomical situations with veins and it doesn't have anything to do with endometriosis per se. So that was kind of my pathway.

Speaker 2:
9:45

So now in my practice I do quite a lot of endometriosis surgery but I've always got my eyes out for, like huh, is this particular patient's complaint maybe related to something else like a vasculent trapment? And then we do some sciatic endometriosis cases, sacroverine neuro-route endometriosis cases, and a lot of that becomes an extension of what one would do anyway. If someone has a colon endometriosis case, most endometriosis surgeons would effectively remove that piece of colon and a lot of other endometriosis. But I may do a little bit more and we may actually dissect out the sacronerverine. It's really thoroughly because I'm concerned anatomically by the way, that that where that disease is going and so the techniques are going to vary slightly. It's not radically different from what other people are doing, but it is different and in some cases it's going to lead to a different outcome not in every case, and I think that's really important.

Speaker 2:
10:34

Is that not everyone that has unsolved pain after endometriosis surgery? Like the answer is neuro-palveology? And sometimes I get that where I'll get people calling me that have had problems that have not been able to solve, and this is the answer. It is sometimes, but not always, and so I would say that it's another way to look at pelvic pain. It's another set of tools that opens up a pathway that may not have been available before, but it still doesn't cover everything, but it does open up a few areas that weren't there before.

Speaker 1:
11:04

Long answer, I'm sorry, no, that's perfect. It leads us to the next question is how often do you see nerve and vascular compression associated with endometriosis, and is it always associated with endometriosis or is the endometriosis on the nerve? Specifically, how many of your cases do you see of that where the endometriosis is on the actual nerve?

Speaker 2:
11:29

Well, I mean to start out with. There's going to be a tremendous selection bias in that answer, because those patients come to me. So how often do?

Speaker 2:
11:37

I see it as not necessarily representative of how common it is in the universe. It is not that common. I would say that it is frequent that there is endometriosis in locations that I think anatomically is probably irritating nerves. I mean all endometriosis pain is nerve irritation in one way or another. I mean all pain is nerve irritation in one way or another, whether it's endometriosis pain or any kind of pain like you've got to be irritating a nerve to cause pain. There's plenty of people that have endometriosis in common locations where people have endo, where anatomically it makes sense what their symptoms are.

Speaker 2:
12:12

For someone that has a dull, aching pain radiating to their back, that is cyclic, and then they have endometriosis is in their uterus sacral ligaments. It's not necessarily directly invading nerves but it makes all the sense in the world because the hypergastric nerve plexus is like half a centimeter underneath those lesions and so it's going to cause enough inflammation that those nerves are going to be irritated. And if you irritate the hypergastric nerve plexus you're going to get dull, aching pain radiating into your back. You're going to get potentially avoiding dysfunction. You can get failure to empty your bladder, you can get urgency to urinate, you can get a variety, and then you can have bowel dysfunction too, where you can have intermittent constipation and diarrhea and dyschysia, which is painful bowel movements.

Speaker 2:
12:54

All that can come from a lesion that isn't necessarily invading a nerve but it's close enough to be inflaming the nerves.

Speaker 2:
13:01

And then there are some cases that literally are invading nerves and they're not that common like there's a subset of them where there is endobiotreosis in the pelvis.

Speaker 2:
13:11

That's just really bad and it's extending out wide enough that it's gotten kind of onto the nerves. And then there's another subset where they literally have what I would call skip lesions, where the pelvis doesn't look too bad but if you dissect all the way down to the nerve you'll find a lesion right on the nerve that was not contiguous with lesions in the pelvis. And those are the ones that are going to be really hard to ever find without neuro-paleology thoughtfulness, because it is the history of the patient that tells you that the lesion is there, by the patient giving you a history and maybe a physical exam that leads you to suspect a lesion on a particular nerve. And then you operate and you don't see anything in the pelvis that would be extending into that area. But you go down and dissect out that nerve anyway and you find the lesion on the nerve Like that is something that without neuro-paleology training you're probably never going to solve, because Nobody's going and making a cadaver to section out of pelvic nerve roots for no reason.

Speaker 1:
14:07

Right.

Speaker 2:
14:07

And so you better have a really good reason to be doing it, because you could injure the patient if you're not technically good at what you're doing. And also those areas are very vascular. There's big vessels down there and if you're not very careful you can get into a concerning amount of bleeding, and so those kinds of things are rare, but they do come up and to some extent they're more often when you're really paying attention to them being like, I see them a fair bit, partially because they come to me, but also I think I make diagnoses that sometimes other people wouldn't make, because I think I'm thinking about it a little bit differently, and it leads one to sometimes pick up on things that you know. It's always hard to say, like I don't know what other doctors think, I don't know what other doctors do, but there are certainly times where I've had patients that have seen other doctors who are, who are good doctors, who didn't pick up on something that I picked up on, and probably vice versa too, like I hate. I never mean to be disparaging of anyone. That's never my point.

Speaker 2:
14:58

It is entirely likely that someone picked up on something like this too, you know, at one point, but sometimes the patient tells you a story that really leads to think of a very specific lesion in a very specific location. And sometimes you'll operate and don't see anything in the pelvis that you think is going to extend into that area and yet. So then you just dissect into that area specifically and indeed find something, and sometimes you find it on MRI. A lot of times those cases are vascular. You know where there's going to be like a little tight band of vein around there which you never was into endometriosis, so there was no reason for it to be extending from anything. But indeed there is a lesion somewhere that is anatomical.

Speaker 2:
15:36

And then there are the occasional, like truly invasive sciatic endometriosis where there's a big knot of endometriosis right or on top of or around the sciatic nerve. They're quite rare but they're gnarly. In those patients they really need surgery quickly because they go from having pain menstrually to having pain continuously, to losing function in their leg for the rest of their life over a period of three to five years. And like when they hit that point, like their leg is done, like the endometriosis has eaten their sciatic nerve basically, and there's not. You can get some recovery eventually, but like you have to find it before that happens, or you're going to have permanent problems.

Speaker 1:
16:15

Yeah, and the difference with that is not a lot of patients have that, but they might have something similar like a vascular compression issue or frozen pelvis or nerve compression issues. What is the difference between vascular compression and nerve compression, or can they be intertangled, so to speak?

Speaker 2:
16:35

Well, I mean, nerve compression is just anything pushing on the nerve. So the general category of nerve compression is there's something pushing on the nerve, so it a vascular compression is one mechanism for creating nerve compression. Fibrosis is another mechanism for creating nerve compression. So if you've had bleeding into an area that over time creates scarring that can compress a nerve and then you have endometriosis around a nerve, you may have fibrotic compression, because the endometriosis is a fibrotic thick scar tissue but also it's inflamed, so there's creating inflammation that is directly inflaming the nerve. So it's both sort of a physiologic inflammation and a physical compression, whereas a vascular compression is just a physical compression. It's not inflammation really.

Speaker 1:
17:17

Okay, okay. You've done a lot of this. Well, some few other types.

Speaker 2:
17:21

I mean you can get a like a pudendal neuralgia. Some people that have pudendal neuralgia have a compression that is an anatomic compression, where they have a very narrow canal between their sacro tuberous and sacrospinous ligament and that creates a very narrow space and when they sit they narrow that space further and they're creating compression on their pudendal nerve. Or they've created scarring in that area by bouncing up and down on a horse saddle for 20 years or by being a serious bicyclist forever and they've been basically creating micro injuries in that place for a decade or two decades and now they've got like a fibrotic compression that has been created over decades of micro trauma. Interesting.

Speaker 2:
18:04

So that's another kind of compression where it wasn't destined to happen, but it was something they did over the course of their life, and so there's a lot of different. And then there's muscular compressions too. There are some places where nerves travel through muscle. Basically, the pudendal nerve actually travels through the. The distal part of the pedendal nerve travels through muscle, and so if that muscle is in spasm it can create compression on the nerve.

Speaker 1:
18:28

Yes.

Speaker 2:
18:29

And usually the answer to that is to put botoxin in the muscle. It's not usually to operate.

Speaker 1:
18:33

OK, interesting.

Speaker 2:
18:34

And then there's a piriformis syndrome, where part of the cytokine nerve is actually going through the piriformis. The cytokine nerve and its roots are supposed to go around the piriformis, but there are some anatomical situations where the nerve is literally piercing the piriformis muscle and if that muscle is then in spasm then you're going to create compression around the nerve. So again, it's like these are different things and there's lots of different things. They're hard to diagnose too. It's not like I can talk and wax philosophical about this, but it's not always that easy to figure this stuff out. Sometimes you'll see it on imaging, Sometimes you'll get it from history. But there is a difference between being able to talk smart about something and necessarily being able to solve it all. I can solve some of it, but not necessarily all of it.

Speaker 3:
19:15

Yeah, one of my favorite things about you as a doctor is that it seems like you take the entire picture into account, as opposed to us.

Speaker 3:
19:27

As a patient, I know Alana and I have both had many experiences where it's all about our organs it's all about the uterus, it's all about the ovaries, it's all about your tubes and your cervix and those things, and I love that you actually acknowledge that we have blood vessels in our pelvis that may be causing issues for people. I've heard you talk previously about pelvic congestion syndrome, or I think now they're calling it pelvic venous insufficiency, and talking about those types of things that are putting pressure on these nerves, and it's just really refreshing, I think, because I think once Alana and I don't have any organs left for you to take. But I still had residual pain. It's like what are my options? And I was lucky because my mom had similar issues and so I grew up with the knowledge of PCS and some of these other vascular compression type things, and so it was easy for me to figure out and I was able to be treated for it, but I just love that that.

Speaker 2:
20:23

Was that helpful. Do you have vascular treatment?

Speaker 3:
20:25

So yeah, so I have Matherner syndrome as well as Nutcracker syndrome, and so I have a stent placed for the Matherner. And then Could it help? Oh, mind-blowingly it's so much better.

Speaker 2:
20:36

Amazing. I would love to talk to you about that, not on the podcast. I want to know in detail about that.

Speaker 3:
20:41

Yeah, no, I'd love to share with you, but it's really frustrating as a patient to have continued pain. You go back to your endosurgeon. They're like it's not endo, which they were right, it wasn't endo for me, but I love that you see it as a whole picture and you put all of these pieces together and you're not just ignoring the fact that there's pain.

Speaker 2:
21:02

Well, a little bit of that is the neuropalveology, because the neuropalveology I mean one, I'm just kind of a curious nerd but one of the fundamental tenets of neuropalveology is that start out with what is the pain, what does it feel like, where is it coming from, how does it travel? And then don't start out with, ok, well, they must have this disease state. Start out with what are the nerves that would be irritated or be activated to create the pain that this person is describing? And then what are the disease states that this person could have that might cause those nerves to be irritated?

Speaker 2:
21:40

And enemy treatise is always on the list, but it's not the only one. And so if you jump to, this person has pain, this person has enemy treatise. Well, I'm just going to go cut out all the enemy treatises and cure them. It's like, well, yeah, you're going to help a lot, no doubt. I mean, I'm not saying that you shouldn't do that and of course you should, but that is not the only answer. Like there are other things that can cause nerves to be irritated and there are also centralized nerve problems. Like I think sometimes when people have recurrent pain and then some people will say, well, they have central sensitization and there are some factions online that say, oh, that's nonsense, it's because their enemy treatise wasn't completely removed. I'm like hello.

Speaker 2:
22:19

Central sensitization is a completely well proven thing. This is not made up. There are central nervous system pain disorders, and central sensitization from nerves is you can document it and experiment with it and it's real. That doesn't mean you can't treat it or there aren't anything, nothing you can do about it, but by denying its existence you're not really doing people any favors. So my goal always as a physician is just I guess I take it all pretty seriously and I take it all pretty personally. Like I don't like it when a patient I can't help or when what I've done didn't work well and it bugs me and I'm like, of course it bothers a patient. They're upset, they're disappointed.

Speaker 2:
23:00

I'm like, okay, how can? What can we do more to try to help? And you just keep pushing and pushing and pushing and learning more. And it's very gratifying when you do spend a lot of time maybe thinking about things in a little bit different way and then suddenly you've helped somebody that you wouldn't have helped, thinking about it the way I used to think about it and it's not every time but you start to pluck off a few here and there You're like, wow, I mean that person really benefited by the fact that I was crazy about this, and so ultimately, that is the satisfaction of what we do. I mean, you know it's nice to make a living and support your family and everything, but that's not. What is really, really satisfying and gratifying is having somebody who really is miserable and then they say I'm better because of what you did. I mean that really makes you feel like you're on the planet for a reason you know, I mean I'm not a very religious person, but it's not like.

Speaker 2:
23:52

It's sort of like wow, I mean you're glad you spent so much time trying to do this, because you really helped that person.

Speaker 3:
23:58

Yeah, and the impact that you and other doctors in this world is immeasurable. I think yeah, and there are so many good doctors.

Speaker 2:
24:07

I can only speak to like how I feel about it and I never. Nobody wants to be the person on the mountain. It says, come see me on the mountain. It's like, no, I'm just the guy that just try. I'm interested in this and I just try to try to do the best I can. We succeed fairly frequently but you know, in the end it's an interesting thing and if you spend it and we've gotten these good at dealing with it in a lot of cases, you know, but it's not that crazy. It's like.

Speaker 1:
24:27

I don't know how to be built in.

Speaker 2:
24:28

You know, you go to a mechanic and they're like, oh my god, how do you do that? And they're like, wow, it's easy. You just go to this school and you learn how to do it.

Speaker 1:
24:35

Yeah, we all use our gifts and skills and talents differently to impact the people around us and create change, and I think that's the best way to do it. What makes us unique as humans and one of the things that I guess I have a question on as well is when you see these patients come in you've done everything you can. Are there points that they need to see another surgeon At what point? Say it's vascular for stents and things like that? Are there next steps? How often does that happen when you do get vascular compression issues?

Speaker 2:
25:15

Or is it easier to surgically on your end. So, specifically for vascular issues, that's a really good point. So if you have an area that, if you believe that there's a vein compressing a nerve, there's two different ways to think about it. One is that you can just remove the vein, which is what I'm gonna do. Or you could try to address why is the vein overly distended, therefore causing compression? So the Mayt-Thurner idea, so Mayt-Thurner syndrome for your audience that doesn't know that there's plenty of people don't know what this is. Even plenty of physicians don't know what this is.

Speaker 2:
25:46

Mayt-thurner syndrome is a condition where the left common iliac vein, so the vena cava a lot of people have some idea what the vena cava is. It's the largest vein in the body that's going up and down your body. If you look at a Da Vinci anatomic thing, you'll see the vena cava, the big blue vein in the middle. Well, it splits into two veins going down into each leg, called the common iliac veins. There is an anatomic situation where the left common iliac vein has to travel underneath one of the common iliac arteries and the common iliac or the arteries are kind of hard that they have thick walls, whereas veins are really floppy bags and sometimes there is an anatomic situation where the left common iliac vein gets pinched between the left common iliac artery and the spine or the sacrum and it leads to the venous return on that left side of the pelvis being blocked. It's like someone's holding onto the hose, like if you can imagine that someone's pinching the hose and the water won't get through. So that big vein on that left side is partially closed by the fact that there's this unusual anatomic compression, and so the veins that then are tributaries to that big vein are inherently going to be engorged because the blood isn't getting through easily. So there's more pressure in those veins. So because the veins are very floppy, they are inherently going to be bigger and stretched. And so if you were to combine that with some kind of anatomical situation where the vein happens to be kind of wrapped over the top of the nerve and then it's kind of overly engorged because it's not draining very well, you might get a situation where there are somatic nerves that are getting compressed by veins, and so one option is to surgically go in and just identify the veins that are offending and just seal them and cut them, which is actually fine to do. The veins are a huge network of it's like a street map. There's just so many different ways to get from here to there. So if you seal a couple of veins, the blood will find other ways to get home. So it's not like the blood won't get back to the heart. So that's one thing to do.

Speaker 2:
27:56

The other thing to do is to try to address the fundamental issue of the fact that the common iliac vein is compressed, and that is by putting a stent in the common iliac vein, which it sounds like that's what you had done, and so that's like putting a scaffolding in the vein that props it open so that it drains. Well, I don't do that. That would be something that's done by an interventional radiologist, possibly by a vascular surgeon, but usually they're done by interventional radiologists now that have kind of an interest in that area. I know somebody that does that kind of stuff in here in Portland, so that's kind of another pathway. You know, when it comes to the other things I do, like there aren't a lot of other surgeons that do it. Like vascular surgeons don't do this stuff. I don't know how much they know about it. They probably do to some extent, but that's not something that they commonly do.

Speaker 2:
28:42

There are other areas of compression too. Like you can get a compression in your wrist carpal tunnel syndrome because of a compression of your median nerve. That's usually not venous, it's usually from a physical compression with the tendons and so forth. But there's always other people to involve when people have recurrent pain. I think it's important to try to engage other surgeons in a thoughtful way, like if there's something that really you have a rational reason to believe that they have something to offer that might be useful, then it's very good to rope them in. I don't really like it when it's like well, I don't know what's wrong with you, just go to the doctor, maybe they'll figure it out. It's like, well, I mean, maybe that'll work. But I would like to have a good reason to believe that the interventional radiologist has something to offer. I'd like to have a good reason to believe that the orthopedist is that the person is a prompt with their hip or whatever.

Speaker 2:
29:32

But, yes, but in a thoughtful way, hopefully.

Speaker 1:
29:35

Yeah, how frequent do you see EDS issues vascular-wise? Because we've talked about this before. I myself have EDS and I feel like a lot of people who have EDS have nerve vascular issues along the way.

Speaker 3:
29:58

Are you seeing a lot of?

Speaker 2:
29:59

that I have a question that I don't necessarily have a definitive answer for. I mean I can kind of speculate. I mean I do have a fair number of patients who have EDS. There are a fair number of patients that have self-diagnosed with EDS but haven't necessarily gotten an actual genetic confirmation of that. So EDS is Ehlers-Danlos Syndrome. It's a condition where you have the most common variation of Ehlers-Danlos Syndrome is a hypermobility where your tendons and ligaments are very stretchy and so you have kind of an unusual amount of mobility in your joints. There are some more advanced versions of it where they can have major vascular issues, where they get like aortic aneurysms and heart aneurysms and stuff. That's actually pretty uncommon and quite dangerous when it's present.

Speaker 2:
30:42

But the veins are made up of have connective tissue walls, and so if you have a collagen defect, part of what makes up the integrity of the vessels is collagen, and so the vessels may inherently be more stretchy because the integrity of the venous walls is just not as good as to how often like? I don't routinely get EDS diagnoses like studies or anything you know. There are geneticists that do that, so it's hard for me to say. I would say that I have a fair number of patients that say they have EDS and some of them who have clear hypermobility that makes me convinced that they do. There is a somewhat of a selection bias in there. That EDS is popular in the. There's a lot of discussion of it in online communities and a lot of patients come to me through various online referrals, and so maybe you have over representation of people that have become aware of EDS.

Speaker 2:
31:31

Because a lot of people don't know idea what it is. One thing I know for sure is that, like when I was a medical student or when I was a resident, eds was like a bizarre diagnosis which like, oh yeah, I read that in a book somewhere but nobody has that and I think we're finding out or it's so rare. It's like this is not really very common.

Speaker 2:
31:46

I think what we're finding out is that EDS is actually more common than we previously understood, and that there are just a variety of people that have some defects in their college and synthesizing system, that have hypermobility, and as for I think it may cause pain because of vascular issues, but I think it may also cause pain because the joints are chronically being stretched beyond the limits of what they were evolved to stretch out to, and so you're getting arthritic changes within the joints or you may be getting chronic pain within the ligaments themselves. That's all fairly speculative ideas, but so I don't have a hard answer to your question, but just a little discussion, I guess.

Speaker 1:
32:25

Yeah, yeah, it's just interesting because we've gone down a lot of rabbit holes of did the chicken or the egg first? And I think that that is true within the endometriosis community at large, of knowing what came first and what to address first. And I think, when it comes to vascular and understanding all the caveats to it, it can be really overwhelming to a lot of us who are kind of chasing whether it's pain from X, y or Z. And so I just have, I think, having a better understanding of things to consider is what will, I think, allow us to advocate better for ourselves and know a better roadmap of where to go.

Speaker 1:
33:08

And the thing that I think we miss out a lot on is talking about those vascular and nerve issues which I think can affect us, sometimes even more than the actual endometriosis. And so I think it's a powerful statement to say most of us have at least some maybe vascular, but mostly nerve involvement as well. If it's not on it, it's usually around it. Hence what you were saying earlier about it Everyone has nerve involvement, whether it's just close or not. By definition, pain is nerve involved, exactly, thank you.

Speaker 2:
33:43

But the question is is it something that's surgically addressable?

Speaker 1:
33:46

or not Exactly.

Speaker 2:
33:48

You could say all pain is nerve pain, but then you kind of lose the meaning of what do you mean when you say nerve pain. Everyone does it all comes down to we can speculate and we can talk about intellectually, about why people are having pain, and then we can talk about what are the parts of that that we can actually intervene with, right, and just like you can learn a lot about EDS and saying, well, this is why I'm having pain or not, but can I intervene? Like, are we really just kind of navelgazing here by trying to think about all this in this really kind of intellectual way? But does it actually lead us to having interventions that are gonna help people or not, or are we just sitting around talking about it? Yeah, it's kind of smart you know Right.

Speaker 2:
34:26

And so there are elements of vascular and nerve issues that can be intervened with, but not all of them, not every single person that has persistent or recurrent pain. That that's the answer. It is an answer in some and it's a miraculous answer in some. To be honest, like I've had some people that I'm shocked by how much doing some vascular interventions worked, but not all of them, but some of them. When I started out doing some of the vascular decompression stuff I do, I was skeptical of it because I really only had Mark Posover to believe, like he wrote some papers and he got some education. But there are plenty of people that felt like that's crazy, that's just normal anatomy. Like what are you doing? You're just going in there and cutting some normal stuff. Like that's not even, that's not a disease state.

Speaker 2:
35:11

And I was skeptical of it myself. I'm like I don't know, am I actually doing something useful here? But I've had some patients that are just so much better from what I did. I'm like wow, I mean I'm surprised almost. But it sort of led me to be more believing in what I was doing and that's part of why I do more neuro-paleveology stuff than I used to, because I was kind of a dabbler in it in the beginning, not necessarily because I didn't not how to do it technically, but I wasn't sure how well it worked and like I didn't, I didn't really want to go evangelize something that I don't want to be a snake oil salesman, you know it's like does this actually work, you know?

Speaker 2:
35:44

I mean, you know you start attracting patients who are desperate. They're going to pay you to do some surgery and it doesn't even work. And then you just feel like you're. I don't feel good about that.

Speaker 2:
35:53

And so it took a certain amount of experimentation before you kind of become convinced. Oh, wow, yeah, this is really a thing you know. This really does work in a subset of patients, and then can we accurately identify which those patients are ahead of time. You hate to just say, well, it works half the time, Like anytime you have a surgery that works half the time and someone says, oh, the surgery is 50% effective. I said no, no, it's 100% effective and 50% of the people Right yeah.

Speaker 2:
36:17

You know. And so don't just be satisfied and saying like, oh, it works half the time, no, it's because you suck at figuring out who to operate on. You know, it works 100% of the time in half the people, which means like there is a refinement there to make. Well, let me say this when you have a surgery that works half the time, you could say well, it's because I'm not doing the surgery well enough, and if I did the surgery better, it would work 80% of the time. Sometimes, that's true, it's more likely that you are not good at identifying which person actually would benefit from the surgery. So that's an intellectual process, that's an educational process, that's an experimental, that's a cognitive issue, that's not a technical issue. And so we really have to think about refining who we should do some of these unusual things on, not just how to do those techniques better, because if you do it on the wrong patient, it's gonna fail 100% of the time, it doesn't matter how beautiful a surgery you did.

Speaker 3:
37:11

Yeah, I think it's important that just because you understand why someone is in pain, you know you might be able to be like, yeah, it's this nerve right here, this is where it's coming from. But that doesn't necessarily mean that it's something you can address. It might be too dangerous, it might cause other issues. It could cause, you know, long-term issues for people.

Speaker 2:
37:28

Sometimes the answer is just to address the pain. When the problem is pain, the problem is pain and people say I don't want to just cover it up, I want to get to the root of it. I want to get to the root cause of it. It's a very popular thing to say I'm like wait, the root cause of it is that you're in pain. That's the problem. That's the thing that is affecting your quality of life. That is the thing that's keeping you from doing what you want to do in your life. If we can make the pain go away, your quality of life is better. It doesn't really matter why we, how we did it. And so, being open to the idea of neuromodulation, of nerve stimulation, of acupuncture, of different things that may affect pain, don't worry about the fact that I'm not addressing the root cause. The root cause is pain. The root cause of your life's dysfunction is the fact that you're in pain. So if there is stuff that's making it better, then it's making it better.

Speaker 2:
38:17

So sometimes when someone has some nerve compression, that I think is they do have a specific nerve lesion, but it's just not addressable surgically. Sometimes the answer is to have an interventional pain management doctor put an electrical lead on that nerve and create a stimulation signal that just blocks the pain signal and those things. Again you hear all these stories of those things failing. Again, it's a selection Like the right patient can be very, very benefited from that. But you can't just like globally say, oh yeah, just put a nerve stimulator in the person because they have pain.

Speaker 2:
38:48

It's like, do does that patient have a very specific somatic distribution of pain that says I'm having pain going down a particular couple of nerve roots and we can't seem to address it surgically. But we could put an electrode on there and we can send a signal that blocks that pain signal from getting to their brain and replaces it with a little buzzing feeling that goes on to they. Eventually the patient doesn't even notice anymore. That's fixing the problem. Or maybe it's going to create a 70% reduction in the problem and it's okay to be open to that. You don't have to look at that as like giving up.

Speaker 2:
39:18

I think that sometimes people look at that oh, I'm just giving up and going to pain management, like no, no, you're not giving up, you're looking at a different modality of how we can address the problem you're having, and so I hate it when people think of different pathways as being failures.

Speaker 2:
39:36

Taking hormonal manipulation for endometriosis, that's a failure. I want to just cut it out. That may be right, like maybe cutting it out is the right thing to do, but that's not a failure. If that pathway is improving your quality of life, then great. Don't reject it because of some like religious devotion to surgery.

Speaker 2:
39:50

You know, some patients will benefit from hormonal treatment of endometriosis very much, and part of why people think that hormonal manipulation for endometriosis doesn't work is because the people that got better from taking birth control pills went on with their life and they didn't get on the Nancy snook. So there are a large subset of people that do benefit from hormonal manipulation for endometriosis and if they're having a good quality of life on it, great. There's, you know, and some of them will have progression of disease. I don't want to get too much into that rabbit hole, but the point is, is that, look at quality of life. What can we do to improve quality of life and be open to everything, whether it be surgery, whether it be medications, whether it be pay management options, steroid injections, whether it be implantable neuro stimulators. There's just a lot of different pathways and they're all have benefits in some patients.

Speaker 3:
40:37

Right, yeah. Yeah, it's not just surgery and physical therapy and that's it. So yeah, sometimes it works.

Speaker 2:
40:43

Yeah it. I mean I do a lot of surgery and a lot of patients benefit from it. But let's give it an example. I had a patient that had a very, very deep lesion going into her sacrum nerve roots and we ended up doing a valer section, did a hysterectomy, did a lot of stuff and she got way better from it. But if she were to have persistent pain in the distribution of those nerve roots I would not go re-operate on her. I already did the best surgery I can do. I have no reason to believe that me going and mucking around in there it's going to make her better. If no, I'm thinking of one particular patient. She's not having that problem. But if she were to have that problem again, I would say you know what? Let's try to put an electrical leads on those nerve roots and see if we can block whatever residual signals going there. Let's see if we can just block it electrically, because you know the answer isn't always just go operate again.

Speaker 2:
41:30

Right yeah, and so from the surgeon's point of view. I think it's not optimal for the surgeon to think that the surgery is always the answer, but it's also not optimal for patients to think the answer is always to have another surgery because it's not.

Speaker 1:
41:41

Yeah, oh, I mean, I think that's refreshing to hear for a lot of people. I think that we don't hear enough of that within that space. I at some point we'd love to talk more about what happens vascularly after hysterectomies and things like that. Those are all important topics to cover as well, because a lot of us and a lot of us experience this. So at some point we can do that, but you're going to be at the summit this year in person.

Speaker 3:
42:09

Yes.

Speaker 2:
42:09

I'm going to be there. I think I'm going to talk about some side-against me trio. So, since some of this stuff and I'm sure a zillion people can curbside me and we can talk about all kinds of things, yeah, well, we'll be there, so maybe we can catch up then and chat about some stuff, yeah. Fabulous. Yeah, I think I'm just talking for like 20 minutes or something, but I'll be there for a couple days and I'll chat with as many people, as I want to talk.

Speaker 1:
42:32

Yeah, it's always a good time and it's always a good experience. Yeah, we can't wait to go back.

Speaker 3:
42:36

We had so much fun last year. Oh good, I've never been.

Speaker 2:
42:40

I've spoken remotely on adit, but this is the first time I'm going to be there in person.

Speaker 3:
42:44

Yeah, no, you'll like it. It's a lot of fun. It is a lot of fun, yeah, cool.

Speaker 1:
42:49

It's a great time and thanks for explaining those things to us, and I am just fascinated every time that you bring something else up, because it's something else that I hadn't thought of before, because it's not often talked about. So thank you for being the voice to that and helping us understand that. Yeah, absolutely, of course, not a bit.

Speaker 2:
43:08

Great, really nice to talk to both of you. I appreciate you having me on and I look forward to seeing you in Orlando.

Speaker 1:
43:12

Yeah, we will see you then.

Speaker 2:
43:13

The last thing that's going to come in to Endo Summit in Orlando. Feel free to come up If you see me come up and say hello and ask me. Whatever you want, I'm happy to talk while I'm there, we will.

Speaker 3:
43:22

We're not shy, we're not shy at all Okay.

Speaker 1:
43:25

Until next time, Endo Battery, continue advocating for you and for those that you love.