Endo Battery

Your Nervous System Controls More Than You Think: Part 2 With Dr. Zac Spiritos

• Alanna • Episode 133

Share episode

Send us a text with a question or thought on this episode

Dr. Zac Spiritos, a neurogastroenterologist, shares his expertise on the complex connections between endometriosis and gastrointestinal symptoms. We explore the critical role of the nervous system in gut function and discuss practical approaches to managing painful bowel movements, bloating, and food sensitivities.

• Common GI issues with endometriosis include chronic constipation, diarrhea, bloating (endo-belly), and food sensitivities
• The nervous system plays a crucial role in gut function and pain perception
• Regular bowel movements are foundational for addressing other GI symptoms
• Slower gut motility is common in patients with Ehlers-Danlos Syndrome and endometriosis
• Antidepressants can be effective for gut pain by modulating pain signals, not treating depression
• The microbiome is promising but testing lacks standardization and actionable insights
• Painful periods are not normal and should be investigated, particularly if they disrupt quality of life
• Endometriosis is often misdiagnosed, with patients seeing an average of 12 providers before diagnosis
• GI symptoms can sometimes appear before traditional gynecological symptoms of endometriosis
• Finding providers who are open to dialogue and willing to investigate complex symptoms is crucial

If you're struggling with endometriosis and GI symptoms, start tracking your symptoms carefully, particularly around your cycle, and don't give up if your first provider doesn't have answers.


Website endobattery.com

Speaker 1:

Why are my bowels so cranky when I have to go to the bathroom? And what does the microbiome have to do with anything? Or what is the microbiome? And what would a doctor ask a patient if they had endometriosis? To learn more? Don't we wish we all had those doctors? Well, stick around, because that's exactly what we're going to be covering in this episode with Dr Zach Spiritos. You won't want to miss it, spiritos. You won't want to miss it.

Speaker 1:

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. 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.

Speaker 1:

Welcome back to IndoBattery, grab your cup of coffee or your cup of tea and join us at the table, as today, we continue with part two of our two-part series, featuring our guest, dr Zach Spiritos, a neurogastroenterologist who practices curious, patient-centered care. He looks at the body as a whole, not just as a collection of symptoms. His approach is especially impactful when it comes to addressing GI-related issues with those with complex illnesses. If you haven't had a chance to listen to part one yet, I highly recommend pausing here and going back. It's full of context, insight and moments that really set the stage for what you'll hear today. But, just as a reminder, this is where we left off and where we're going.

Speaker 2:

Can I ask you, as someone with endometriosis, what are some of the common bowel issues that people like I see people in clinic, but what is like the? What are some of the day-to-day concerns that have come up in your life that you think people would really want to hear about in terms of just making sense, heads and tails of why things are the way they are?

Speaker 1:

Right. I mean what I hear a lot and what I've experienced is that it's automatically assumed that we have IBS because we have chronic constipation, chronic diarrhea and then bloating, bloating, bloating, bloating. You know we talk about endo-belly. Endo-belly is a very real thing and it can happen. You know, you can wake up one morning and feel great and then midday you literally can't put your pants on and you know, and a lot of it is cyclical, although not always, it can vary all month long and then another part of that is just that nausea, nausea, vomiting, having a hard time with food, keeping it down, but also just not wanting to eat in general because it doesn't feel good. You get a lot of joint pain with certain foods. You get a lot of I mean just that inflammatory response.

Speaker 1:

I think we see a lot of that with endometriosis and a lot of people struggle with just more food intolerance. A lot of people it's gluten, a lot of dairy or soy. For me specifically and I've said this time and time again, people are probably sick of it, but I don't have the same response to that as other people. I have a hard time with beef and eggs. It's so random. We struggle with food and then going to the bathroom and then we tie to that. We talk bowels, we talk that aspect of it, but also a lot of us really struggle with UTIs that aren't UTIs, so that is a huge correlation as well. Or overactive bladder, where you feel like that sense of urgency I got to go, I got to go right now. That commercial, the got to go, got to go right now. There's a lot of that. That kind of all kind of we deal with. I'm not sure if I'm answering that to you very well.

Speaker 2:

You answered that perfectly. And there's one thing that underscores almost all of this, and that's the nervous system. Right? If you have that person with diarrhea and constipation, I guarantee if I I can't guarantee it nine times out of 10, if I scope that person and do dual studies, it's going to be completely normal, right? So why is that? It's the nervous system, and so that's what IBS is. But also, if someone has comorbid POTS, they may have a slow moving colon, which again goes back to the nervous system. So how do we mitigate that? And it can be again, everybody's different and a lot of issues.

Speaker 2:

Whether it's bloating pain, one of the first questions I ask is how often do you poop? Because if you're not pooping very often, nothing is going to solve itself. Like bloating, like amazing 5 out of 5 Yelp review supplement is going to help this. Nothing's going to work unless you poop regularly. And it's easier said than done, right, but I refuse to go into anything else unless you're pooping regularly, because we have to get the pipes clean. There's a backup on 95. Everything before that it doesn't work. You just got to clear that out first.

Speaker 1:

Right, so yeah, and that can be.

Speaker 2:

We always start with. I always talk about lifestyle there first, Right, so yeah, and that can be. You know, we always start with. I always talk about lifestyle there first. You know, drinking enough water, eating sufficient fiber and fiber can be tricky because it can lead to bloating, and so there's an art to that and it's starting low and going slow and trying to find less fermented forms of fiber. You know, psyllium husk is a good one If you really can't tolerate any fermentation at all, citric cells and artificial fibers. That doesn't cause any bloating. I tend to like that less because it doesn't really benefit our microbiome. But there are forms of higher fermented carbs or fibers that are called FODMAPs that we generally like to avoid in that patient population. Yeah, like low fermentation fiber sources is a good place to start. Movement's a good one, but I recognize if you deal with post-exertional malaise, brain fog, like moving can be tough. So I say that with a grain of salt.

Speaker 1:

Right.

Speaker 2:

And then, you know, sometimes we do use laxatives as well, depending on what's going on. And there are certain ones that are most, are really, really safe and don't cause no laxatives, cause a dependence on the colon, like no one will make the colon leave. That's a myth that has been debunked, fortunately, and we try to do things without medication. But sometimes you need something to help that colon squeeze or to get more water into that colon. And then there's issues like if someone has EDS, a pelvic floor dysfunction is a really big deal.

Speaker 1:

Same with endo.

Speaker 2:

Yeah Huge deal, and that is I had three patients today. Like I've been on laxatives for years, I can't find the right one. It's because it's not a laxative issue, it's a coordination issue. It's because we're not evacuating well enough, and so we can talk about that too. But yeah, it's the first conversation when people have nausea bloating.

Speaker 1:

It's just making sure that we're-. What do you do for patients who have pain with bowel movements? Because that is a very big thing for the endometriosis patients? Obviously, if you have lesions obstructing your bowel you're going to have pain and that you know. Maybe it's getting the proper excision specialist that can do those bowel resections or who can you know take care of that. But there are those patients that they're not there yet. Are there ways to help with painful bowel movements.

Speaker 2:

It's a really good question and so it all depends on what's causing the pain. So if it's endometriosis and some you know, I don't know the data between painful bowel movements and endometriosis If you treat the endometriosis that better. But my sense is that. So the first issue is like what does the poop look like? Is it hard and pebbly? Is it just if you just if it, is it painful, just coming out because it's goodness, it's desiccated, it's hard, it's dehydrated and just have a tough time coming out? So that's low-hanging fruit. Just getting the like kind of moistening the stool is is a good place to start with water fiber. Soluble fiber works as a sponge to absorb a lot of water and to make that stool softer. And sometimes you may need laxatives as well.

Speaker 2:

But painful bowel movements is somewhat not pathognomonic. But a lot of patients with IBS have this and it's this very highly sensitized nerves in the gut. So how do you make it less sensitive? And that's an individualized conversation. So first and foremost is, how do we get from those nerves? Our brain is quite good at tuning out pain signals that it doesn't need to hear. If you break your foot, your brain kind of needs to hear about that. But when you poop like your brain doesn't really need to hear about what's going on in your colon. It doesn't need to hear those pain signals and your brain has a really tough time tuning those signals out if it's stuck in fight or flight mode. So I'm always talking about how well do you sleep, because you can really never get a fight or flight if you're not sleeping well. How often do you get outside? Do you exercise?

Speaker 2:

And then we talk about methods to get us in back into parasympathetic mode, which is it's meditation, something that worked for you. Hypnosis worked for some people. Cognitive behavioral therapy really works well. If someone has a lot of really um, it's called catastrophizing, like, oh goodness, I'm bloated today, now, today's ruin, right, and that thought process just makes things so much worse. So it changes your thought patterns behind the symptoms, which it takes some time. Some people don't buy this when I first say it, but those thought patterns can make symptoms and pain way, way worse.

Speaker 2:

And then sometimes I bring up medications. There are laxatives like linacletide or linzess that actually have analgesic properties in the colon as well. So they make you poop but also help with pain receptors too. Okay. And then we use antidepressants Interesting and this is a controversial topic, and I have this Instagram account where I put a lot of information out there and every time I talk about antidepressants, people are like why are you giving us this poison? I'm like, hold on, it's not for everybody and I want to preface this. It is a valuable tool that we use in IBS and I'm going to break down why, because I always wanted to say this on a platform. Okay, so we don't use antidepressants for your depression or anxiety. Okay, we use them for their neuromodulator problems.

Speaker 1:

What does that?

Speaker 2:

mean, okay, so let's take. There's a medication called Cymbalta which is a selective serotonin and norepinephrine reuptake inhibitor. So norepinephrine, otherwise known as adrenaline, really helps with pain. So say, for example, we're playing a basketball game, right, you're going two on two, one on one. You're playing against your sworn enemy. You turn your ankle, but you're kind of able to gut out the game because of adrenaline. You don't feel that ankle a whole. The next day it hurts. I mean, it's bananas, you got to ice, you got to rest, all the stuff that us old people do. But so adrenaline is a really nice chemical that we can use in our own body to tune out pain signals. So Cymbalta really helps with neuromodulation and turning down the pain signals at the level of spinal cord up to the brain. So the brain is unable to tune out those pain signals anymore. Cymbalta really helps us with that. The beautiful thing about it. So one also someone's dealing with kind of comorbid, really intrusive anxiety, it does help with that.

Speaker 2:

But if not, this medication does work as well. People are open to it. And the beautiful thing is we can get people off this medication. So we benefit from neuroplasticity, so those nerves can learn, adapt and grow over time. So we're, after being on Cymbalta and being pain-free for effectively 12 to 18 months. We can wean people off the medication. The pain doesn't come back. So that's how we use antidepressants. Okay, it is not forever, I get. Being on a medication is not ideal, but it is a tool in our toolbox if we choose to use it. And the beautiful thing about irritable bowel syndrome visceral pain like this is there's so many ways to go about it. You want to get hypnotized? Let's press that button. You want to use a medication? Cool, we can do that too. And so everybody's plan is different and unique to who they are, what their goals are and what appeals to them.

Speaker 1:

Interesting. I'm so glad you broke that down for us, because that's I mean, we are always looking for tools to put in our tool belt because there's different ways to handle it for everyone, and we see this with hormones, we see this with you know, care and treatment is that everyone is going to be different in what they need, desire and want, and so to look at it and have different tools to kind of play off of and be able to really navigate your care, that way is powerful. I mean knowledge is power, right, so put more power tools in your belt because we can really ramp that up a little bit more.

Speaker 1:

I have a question that I think we'll see if we can do this With EDS and endometriosis do you see more sensitivity with like do you see more lazy, gut with this, or lazy, or like the microbiome being off more?

Speaker 2:

Hmm, there's a lot to unpack there. I think the first question I can certainly answer and that EDS patients are prone to slower motility.

Speaker 1:

Right.

Speaker 2:

Okay. So not only in the stomach, but also the esophagus, the small intestines and the colon. So the first thing I'm thinking about is is this person able to get by with lifestyle measures alone, because perhaps their colon just needs a kick in the butt to squeeze more, and that's where we have some laxatives that really work in that way. So, yeah, the answer is yes. Patients with EDS tend to have more sluggish motility. The gut microbiome question is very fascinating fascinating, and we're not ready to answer that, and this is a hotly debated online as well, and so, you know, I really hope that in five to 10 years, we can leverage the microbiome to get people feeling better. We're just not quite there yet, and so people are working really hard to understand. What is Alana's microbiome? What should that look like? Okay, so when you test your microbiome and they say, okay, they showed this bacteria, this bacteria. Is that right or wrong for you? Right, testing someone's microbiome is saying you know, it's like your hair length, like should my cause? My hair isn't like your hair. Should I grow my hair longer? Should my microbiome be like your microbiome? We don't know. And so when you do these tests, we just don't know what to compare it to. And I'm going to kind of go on a little tangent here. But you know, in any test that we order in medicine, you have to understand the test properties. Okay, there's a test called the lipase that we use for pancreatitis and it's used inappropriately all the time and it'll be high but the person isn't having symptoms consistent with pancreatitis. Well, the test isn't good. In this clinical context you have to understand the context of the test, the sensitivity, the specificity, the accuracy. There's all these test characteristics that we know about all these tests. There's a lot of microbiome tests. We have no idea about the accuracy of any of them Interesting. So when patients come to me with this I'm like great, I don't know. I don't know, we're not there yet. We just don't understand how good this test is. And then, secondarily, we don't know how to manipulate it, right. So you say, okay, so we want to turn these knobs and get more of this bacteria and less of this bacteria. Okay, say that that's still a little bit misinformed because we don't know manipulating that data will get you feeling any better. Let's say we say start this probiotic. Are we sure that works? The answer is no, right, because that test hasn't been done.

Speaker 2:

I tend to believe, based on the data that I've read, that probiotics are fly buyers. Right, they'll inhabit your colon as long as you take them, they're not sticky and they don't linger. So are you then forced to take a probiotic for 50 bucks a pop indefinitely? Are we sure that's a good idea? And so I think there's a lot of questions that we need to answer, and I've met people that said probiotics changed my life. I can now use the bathroom again, but the majority of people that I see in clinics said they didn't do a darn thing. And so I say use probiotics at your own discretion. I will never recommend it because I don't think. I don't know yet. I just don't know. And so, going back to the original question I'm sorry, I kind of soapboxed.

Speaker 1:

No, I like it. This is good, because I'll follow up first.

Speaker 2:

I don't know how the microbiome affects endometriosis, eds, you know and some people say like, oh, look at obesity. There are these patients that have this microbiome changes in obesity. I was like, well, are you sure that didn't happen as a consequence of obesity, or did that lead to obesity? And are you telling me that if we switch the microbiome, that people will lose weight? Are we sure? And the same thing for all these conditions, right? So if we test someone's microbiome in IBS, I'm like, is this because of IBS or did this cause IBS? And what does it mean? Do I make these changes as the IBS go away? And we're just goodness we are. They're really smart people working really hard. And I really encourage people to look at Will Bolshevitz's Instagram. He's a friend, he's a GI doctor, he's a really smart guy talking about the microbiome. He's a really good resource out there for people who want to learn more.

Speaker 1:

Well, and that leads me to like the stool testing, because a lot of people will do the stool testing to see what they're lacking or what they need or what's going. You know they use that as a metrics for wellness, if you will. What are your thoughts on the stool testing? Because a lot of people will try them in effort to figure out what's going on with their body.

Speaker 2:

I don't think we know what to do with those tests yet I never recommend them. I've yet to see it benefit anybody. I also don't work in the functional medicine space right, where they use these tests a lot. We haven't brought them into traditional medicine because there's not enough data behind it. So we like to say when I get this test, what is the likelihood that it's informing me of someone's health and their health challenges and what's the likelihood that this is a false positive? Is it a false negative? How accurate is it and is it actionable? If I get this data, what can I do to improve it? And if I'm confident that I can improve it, we'll make this person feel better. There are so many steps in there that we haven't figured out with microbiome testing. Forget the fact that if you get your microbiome test from five different places, you're going to get five different answers, right. So the test itself is just unreliable. So I get what people want to know and this is one of those things that I categorize in you know, just to know. But is it really going to help you? And my answer is I'm not sure yet and I haven't seen any data to suggest that it really helps people. But I have, you know, I started this Instagram and I'm interacting with a lot of people that I otherwise wouldn't have met, and people say it changed my life and I said how? And no one has given me an answer yet.

Speaker 2:

I am so open to learning more. I am not in this traditional medicine camp where I say it's pseudoscience, it's made up. I don't believe that. I just don't know how to use it. If someone can teach me how to reliably use it, because there's no clinical data to say that it works yet, I promise you, I'm all ears. I say this with just open curiosity and wanting to learn more and I'll say I use. You know, I interact with a few natural doctors or naturopaths. I said we use this all the time. I said but how, how do we use it? And you test it afterwards what? How do you leverage it? Do you use dietary measures? Do you use probiotics? Do you use exercise? Do you sleep? And I have. I haven't really got an answer yet. So I'd love to have that dialogue with somebody one day, if they're open to have it, yeah.

Speaker 1:

So, speaking of your Instagram, tell us what your Instagram handle is, so that people can follow you, because I think they should.

Speaker 2:

It's DrZachSpiritos.

Speaker 1:

There you go. Okay, what is your biggest piece of advice? Before we move on to the question portion for you, what is your biggest piece of advice for patients who are struggling to find their diagnosis, or one of the biggest challenges you, as a provider, have in helping patients with these challenges? It's twofold.

Speaker 2:

So yeah, so I think that I would. I would catalog all of your symptoms, okay, and when you bring it to it, if you choose to go to a doctor for this, I would write it down in a very succinct. This is what really bothers me. I've done some research and this is what I think it may be. What do you think? Okay, because it really and obviously go through the whole, like you have to tell your whole history and go through everything and let them come to their own conclusions. And if you guys are on the same page, beautiful, okay.

Speaker 2:

But if perhaps they're like, maybe this is IBS, I'm like I disagree. You have to say, well, I think it's this, and if it's not this, or you don't think it's this, can you tell me why? And if that provider isn't open to that dialogue, then you have to change teams. And it's just as simple as that. If you don't have a provider that is open to a dialogue and curious about what may be going on, then they're just they're not the right person for you, because, by nature, if you're listening to this, you have a complex, chronic illness, right, and it's it's going to be challenging, it's going to be an ongoing effort between you and your medical team. So I really like when someone says like this is what I have, this is what's really really bothering me, because I also know that people's brains are completely washed when they go to a doctor's office.

Speaker 2:

I went to a doctor a few times this year because I had some heart stuff going on and I completely just forgot everything when I went to go talk to them. And I'm in medical, it just happens right and you're so excited to get there. They rush in right. They're sweating because they've been seeing 20 patients that morning and they're like they haven't shaved or I don't know if that's a guy, I guess you know they're unkempt. You're like, oh, this guy looks like he's disheveled and I'm trying to condense everything. But a piece of paper, really, you know it anchors you to what your reality is and what's been going on.

Speaker 1:

Yeah, okay. What are the challenges you face that patients should be more aware of?

Speaker 2:

Goodness, I mean, there's a lot really tough. I'm trying really hard. I think people get frustrated by the lack of progress sometimes and the beauty of so. I'm a neurogastroenterologist, which means that I deal with a lot of invisible chronic conditions, and so there's not a lot of data in this space, and a lot of my decisions and therapeutic plans are based on what I think is an intimate knowledge of pathophysiology and medications and a good grasp on the testing out there and so. But it's not like hey, I broke my ankle. There's an x-ray of my broken ankle, you're going to fix it. That's going to get me better A hundred percent.

Speaker 2:

This is different. It's a lot of. It's certainly not guessing, but it's. It's a we're, it's expert opinion and we'll. I'm trying so fr freaking hard, I promise you, and we're going to try. And if this hits, awesome, right, we're not going to get 100% better in three months, but 30% is what I'm looking for. If it doesn't work, let me know immediately and we will pivot and try something else, because this is an ongoing evolution, right, and so this is invisible, right? I don't have a test result to say that's it, and unfortunately, those tests don't exist, because a lot of this is based in the nerves and dysautonomia which we, quite frankly, can't test for the most part, and so, yeah, I just it's be patient with the process, and we're looking for getting 1% better each day, as opposed to a complete overhaul.

Speaker 1:

Yeah, that's really good advice and that's something that I think we all need to hear. This is the portion of the podcast that has been a favorite, which is you get to ask me any questions you want, whether it's patient-based or provider. Oh, I know, just get excited for that because it may not be good, but we'll see how it goes. But you can ask any of these questions because you aren't endometriosis specific, and so I think it's important for people to hear things that other providers have as far as questions go to the patient, and this is kind of a reverse role to play. So let's go for it. Any questions you have, I'm here to see if I can answer them you have.

Speaker 2:

I'm here to see if I can answer them. Bring it on, All right. So what is the biggest misconception about endometriosis that doctors have? And I think I've said probably three or four things that I'm sure in your head you're like. That's just blatant false. Yeah, yes and yes, you've got a lot of incorrect.

Speaker 1:

So one of the biggest things is the definition which they are taught endometrium and it's not endometrium, it's endometrium-like cells. They are actually two different cells. They actually have research backing this up, that it is not retrograde in the sense that it's not the endometrium coming out, flowing out, going into the abdominal cavity or the pelvis. It is actually endometrium-like. They're two different things. Endometriosis produces its own estrogen. It's a crazy disease that it has its own brain, it has its own food source and it can provide its own food source, and so that's probably one of the biggest misconceptions is that it comes flowing out and it's endometrium. It's not. They're different cells and that's why it's been found all over the body. It's been found in the brain, it's been found in the nose. It's been found there's more cases showing up cardiothoracic diaphragmatic. It's been found everywhere, and I think there's that's the reason that it can be so complex to diagnose as well is because depending on where it's located and how it's responding with your nerves means that your symptoms are going to show differently and you're going to respond to that differently. Right, we've talked about the brain and how that has such a huge role in how we perceive pain and how we adjust to pain right and in our environments it's highly inflammatory in nature.

Speaker 1:

It's genetic in nature as well, which some people have a hard time understanding. That Dr David Redwine he was a genius at this, he really dug deep into the genomic aspect of it. It tends to be very generationally induced. So if someone in your family has endometriosis, you are seven times more likely to have it. So when I'm sitting here as a patient who's had deep infiltrating endometriosis, I have two daughters. They're likely to have it. In fact, I would say this my daughter, who is not yet on her cycle, is showing signs in her GI in the way that I did, is showing signs in her GI in the way that I did. So we're seeing a lot of generational endometriosis and I don't know and this is something that you know, I'm going to talk to another doctor about but I don't know why it seems to be getting worse and I think maybe it could be environmental.

Speaker 1:

It could be that we are in a heightened state in the sympathetic system, more we aren't good at balancing our sympathetic, parasympathetic system. I think there's that role to play in there, and Dr Mark Possover, who is a neuropelviologist, talks a lot about this and how we don't need to downregulate our sympathetic, we need to up-regulate our parasympathetic, because if you're trying to raise that sympathetic, it's so hard, it's daunting, it's so hard to do. But if you can increase your parasympathetic, then that's where it'll kind of be that teeter-totter of leveling out, if that makes sense. So those are just some of the biggest misconceptions that we kind of face.

Speaker 1:

Also, hysterectomy will cure it. It does not cure it. Ablation gets rid of it. It does not get rid of it. Ablation really just cuts it at the surface instead of taking all the disease out. It's like a cancer. It grows like a cancer. Take it from the root, and so that's probably some of the biggest misconceptions that we hear amongst others. But those are some of the bigger ones that you will hear time and time again if you look online or go to a doctor's office fundamentally changes from what its origin was to something different, and that's complete news to me.

Speaker 2:

Yes, and then you said that your daughter is having GI symptoms. Do you find that GI symptoms are sometimes the canary in the coal mine for endometriosis? Can they occur before kind of classic gynecologic symptoms, or how do you see that play out, I guess the chronology of those things?

Speaker 1:

I do. I absolutely do so when we're looking at food sensitivity and getting nauseous diarrhea to certain food and you can track that cyclically prior to their cycle, because we start cycling before we have menstrual flow. Right, that's our bodies, the hormones shifting and changing. So as I'm seeing these shifts and changes, I'm seeing her become more sensitive to certain foods. I'm seeing that she's having a harder time going to the bathroom. She has more constipation and then she also is. She's always had a sensitive stomach, but I do think that it has gotten progressively worse as she's starting to get into that hormonal shift.

Speaker 1:

So I look back at my history and I don't remember a lot, but I do remember having a hard time as a kid with the GI symptoms. Most people I talk to who have had GI symptoms in their diagnostic process figure it out. A lot of it starts prior to their menses. So it's just something to be highly aware of and it's something that a colonoscopy or endoscopy is not going to catch because it's from the outside going in. So most of the time a lot of patients will have a colonoscopy to try to figure out what's going on and they're going to say well, it's clean. It's clean as a whistle Like there's nothing there and and then an endometriosis surgeon will go in and they'll find, you know, pretty deep disease in the bowel wall and which you know, or their rectum or their, you know. So it kind of is pretty invasive, but sneakily so sometimes.

Speaker 2:

Okay, tricky. And so when someone has symptoms, okay, and they are concerned that this may be endometriosis, like the parallel in my world is like and IBS is really tough to diagnose, so where do you start Right? And then, if imaging which I imagine imaging is rather imperfect for picking up endometriosis, where does that dialogue continue? Is it just a clinical diagnosis, like I have these symptoms, we've rolled out everything else, like it's got to be this, or how do you, how will you inform someone to start that conversation with the doctor and start that diagnostic journey?

Speaker 1:

Yeah, well, I think what you said before is listening right. So as a patient, we as patients have a responsibility to track our symptoms and if we have a hard time, have a support person that will help you. Because I will tell you, my husband picked up on way more of my symptoms than I ever did. He was able to pinpoint the time of month that I was having a hard time, like he would be able to see things that I wouldn't, because I was in so much pain, I was in debilitating pain, and so he was picking up that I was moody prior, like PMS. They say PMS if you're moody, that's a good indicator that you know moody, plus maybe painful periods.

Speaker 1:

Periods should not be painful. We've said that they're okay to be painful, they should not be painful. Uncomfortable is one thing, painful is a whole nother thing. If you are missing out on your quality of life, if you're having to cancel events or not being able to go to school, if you're young, if you are having reoccurring UTIs, things like that, during your period, that's a good indicator that that could be endometriosis. And so I think for a lot of people, painful periods have been normalized. It's not normal and we should be looking at endometriosis as a culprit. But if you're having constipation, diarrhea, more food sensitivities during your cycle or maybe during ovulation, that's a good indicator putting all of those together. And then interstitial stessitis gets. I can never say it right, but that gets categorized often as as something when it actually is endometriosis on the bladder. So there's a lot that you can look at. Another thing that I think providers could look at more is the muscle.

Speaker 1:

I'm your most alana and this is endobattery charging your life. When endometriosis drains, that's a good indicator that it's on the utero-cycral ligaments and that is not a non-common place for it to be. It actually is one of the number one places to be, so just kind of seeing. Okay, here's a checkbox of things that they're going through. This isn't just one or the other. This is like this is a lot going on during specifically the cycle, but if it's been going on long enough, sometimes it's all a month long. So that's where it gets tricky. The question on the imaging a lot of OBGYNs will do imaging, but it's usually they'll say, oh, there's nothing in there, we don't see anything, there's nothing in there, we don't see anything.

Speaker 1:

This is where an endometriosis specialist is going to be the best option for you if you want to do imaging, because they can do things like a sliding or a dynamic ultrasound where they can see.

Speaker 1:

So if you're looking at your uterus, your ovaries, and they go to put the vaginal ultrasound in and they're moving it, if it's all moving together, that's a good indicator that it's all tethered together right, like there's lesions holding that together. Now if it's moving separately, usually that's not an indicator of deep infiltrating endometriosis, it's just, but that doesn't mean that you don't have it, because it could just be minimal on the surface but still painful. It doesn't dictate the pain and they can't do that in like the utero sacral ligaments and stuff like that. So there is imaging that you can do, especially bowels. They can tell on MRI and on ultrasound If, if they're experienced in what they're looking for, general GYNs are not experienced enough to do that. They're not trained how to do that, and so these doctors all they do is endometriosis and so they're able to identify the anatomy that's distorted, so that they can say I'm 95% sure you have endometriosis. And again, it's hard to say definitively until you have a pathological confirmation of it. So long version, but that's generally how.

Speaker 2:

No, that's very helpful and it sounds like you just need to find yourself someone who's well-versed in this and if you get negative testing but you're like, goodness, this is something is not right, is to continue looking. It sounds like there are specific GYN physicians that are more savvy with endometrial disease, so it's good to hear.

Speaker 1:

It's very informative. Yeah, yeah, and as a patient, you know we can't stop at one no from a doctor and sometimes we can't stop at seven. I think the average providers we see to diagnosis is roughly 12. So that puts things in perspective a little bit and it goes anywhere from GYNs, primary care, to GI doctors to anything kind of depending on your symptoms. Now, those are only symptoms that I talked about that are more pelvic-related symptoms. There's diaphragmatic and cardiothoracic and other things. But yeah, that's generally what people are going to deal with.

Speaker 2:

Wow, Well thank you for being such an amazing patient advocate and making people feel heard when otherwise their teams that should be listening to them or hearing them may not kind of offer that solace. So what you're doing is really amazing yeah.

Speaker 1:

Well, I thank you for what you're doing and being open to conversation and learning about all the aspects of medicine, not just what you've learned in school, but opening up and expanding your horizons, if you will, to learn more to help your patients, because it's obvious that you got into this for the patient care, not the paycheck, so appreciate that.

Speaker 2:

Oh yeah, oh yeah. It's my pleasure. I I've a lot of fun doing it, a lot of challenges, but I learn from patients every single day, and not only they're. You know the pathophysiology of what may be going on, but they're just like how they've battled through all of this and the resilience that comes with. You know dealing with chronic, invisible conditions. It just makes them so fricking tough and yeah, and, but they, they deal with a lot. People deal with a lot. That's unfortunate, and I always make the analogy. You know it's like. Having one of these conditions is like, you know, driving your car on the highway and your car rattles and it shakes and you take it to a car dealer Like everything's fine. I don't know what you're talking about. Maybe you're driving it wrong. Oh my God really. And that's what I think you know it's, and so I always you know I give a lot of respect and admiration to people dealing with these conditions.

Speaker 2:

Hopefully you find the right team to support you.

Speaker 1:

Yeah, and that is my hope for everyone the more informed and more knowledge they have that they can find a good team that helps support them. We're going to have to do this again. I'm sure I'm going to have more questions at some point. We'll have to answer some of these questions, but we'll have to continue the conversation. I love it.

Speaker 2:

Anytime, anytime. I had a great time.

Speaker 1:

Until next time, everyone continue advocating for you and for others.