Endo Year Reflection: #5

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is Indobattery charging our lives when endometriosis drains us. Welcome back to Indobattery. Grab your cup of coffee, cup of tea or whatever brings you comfort and join me at the table. I'm so glad you're here as we continue our endo year reflection series.

Speaker 1:
0:52

Reflecting on this past year has been nothing short of amazing, full of personal experiences, expert insights and practical ways to navigate life with endometriosis and other chronic illnesses. To navigate life with endometriosis and other chronic illnesses. Honestly, there's been so much ground covered it's impossible to condense it into just one episode. That's why I've broken it down into smaller portions, bite-sized episodes, if you will. Whether you're revisiting an episode that really struck a chord with you or you're catching up on something you might have missed, I hope this series is just as impactful for you as it's been for me.

Speaker 1:
1:26

One standout episode that brought a fresh entree to the table, if you will, was when Chelsea and I sat down with Dr Nick Fogelson in episode 70. This conversation was a game changer, as he introduced us to the concept of neuropelviology. If you're thinking, what is that? Trust me, I had the same reaction when I first heard about it. Dr Fogelson not only broke down what neuropelviology is, but also explained how common it is in the endometriosis community. What's fascinating is how his approach differs from many other endometriosis specialists. It was an eye-opening discussion and I'm excited to revisit it with you today. Take a listen.

Speaker 2:
2:05

Basically what neuropelviology 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, 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:
2:39

Right, you become a hematologist, you learn it again, and so neuropelviology 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. So neuropelviology 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 of 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 you know, that was kind of my pathway. So now in my practice I do quite a lot of endometriosis surgery, but I'm always got my eyes out for like huh, is this particular patient's complaint maybe related to something else, like a vascular entrapment?

Speaker 2:
3:57

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. For someone that has a dull, aching pain radiating to their back, that is cyclic, and then they have endometriosis that's in their uterus sacral ligaments. It's not necessarily directly invading nerves but it makes all the sense in the world because the hypogastric 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 my gastric nerve plexus you're going to get dull, aching pain radiating into your back. You're going to get potentially voiding 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, or you can have intermittent constipation and diarrhea and dyskinesia, which is painful bowel movements.

Speaker 2:
5:00

All of that can come from a lesion that isn't necessarily invading a nerve but it's close enough to be inflaming the nerves. And then there are some cases that literally are invading nerves and they're not that common. There's a subset of them where there is endometriosis in the pelvis. That's just really bad and it's extending out wide enough that it has gotten kind of onto the nerves.

Speaker 2:
5:22

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 neuropelviology 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.

Speaker 2:
6:03

Like that is something that without neuro-pelviality training, you're probably never going to solve, because nobody's going and making a cadaver dissection out of pelvic nerve roots for no reason, 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.

Speaker 1:
6:31

Well, the talk about neuropelviology is absolutely fascinating and definitely something that I feel like needs way more attention. It wasn't the only thing that Dr Fogelson unpacked for us in that episode. He also dissected see what I did there some of the different types of pain simulators that can significantly impact those of us with endometriosis and chronic illnesses, from vascular compression to May-Thherner and even some central sensitization. He really broke it all down in a way that left me hungry for more information. Since that episode first aired, I've been struck by how often these conditions come up in conversations within the chronic illness community. I've seen more and more people being diagnosed with May-Therner syndrome and things like pelvic congestion syndrome and honestly, it's highlighted the urgent need to explore these contributing pain factors even more. But before we dive any deeper into those conversations, let's go back and listen to Dr Fogelson as he clues us in on what these conditions are, why they matter and how they might impact you. Take a listen.

Speaker 2:
7:37

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, okay, 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:
8:10

And endometriosis is always on the list, but it's not the only one, and you know. And so if you jump to, this person has pain, this person has endometriosis. Well, I'm just going to go cut out all the endometriosis 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. I think sometimes, when people have recurrent pain and then some people say, well, they have central sensitization, and there are some factions online that say, oh, that's nonsense. It's because their endometriosis wasn't completely removed. I'm like hello.

Speaker 2:
8:50

Central sensitization is a completely well-proven thing. This is not made up, okay. There are central nervous system pain disorders, yeah, 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 nothing you can do about it. But by denying its existence you're not really doing people any favors, right? So the May-Therner idea, so May-Therner syndrome, for your audience that doesn't know that, because plenty of people don't know what this is. Even plenty of physicians don't know what this is.

Speaker 2:
9:25

May-therner 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.

Speaker 2:
9:35

It's the largest vein in the body that's going up and down your body. You know, 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 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 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.

Speaker 2:
10:22

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 a 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.

Speaker 1:
11:09

If this segment left you wanting to learn more, I highly encourage you to go check out episode 70 in its entirety. Dr Fockelson shared so many incredible insights and, honestly, it was tough to break this episode into smaller segments. It was that good and packed full with really insightful nuggets of information. Thank you for joining me today for this episode of Indo Year Reflections. I hope this stroll down memory lane has been as refreshing and encouraging for you as it has been for me. Be sure to join me next episode in this series as we revisit more of the conversations and moments that truly charged our battery this year. Until next time, continue advocating for you and for those that you love.