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From Microbiome To Blood Vessels: Why Treating Endometriosis Takes A Whole-Body Strategy With Dr. Gaby Moawad

• Alanna • Episode 184

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We reframe endometriosis as a whole-body disease and map how gut microbes, blood vessels, and lymphatics drive symptoms, pain, and fatigue. Dr. Gaby Moawad shares strategies for multidisciplinary care that builds trust, reduces inflammation, and improves long-term quality of life.

• endometriosis defined as multi-systemic, not just pelvic pain
• harms of dismissal and why trust and clear plans matter
• microbiome dysbiosis, estrobolome, LPS, and estrogen recycling
• targeted gut recovery beyond unnecessary antibiotics and laxatives
• angiogenesis via VEGF, HIF, MMPs, and leaky vessels
• lymphatic spread evidence and distant organ involvement
• metabolic dysfunction, insulin resistance, mitochondria, and fatigue
• multidisciplinary care beyond the OR and throughout recovery
• recurrence as multifactorial and the need for long-term strategy

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Speaker 4:

What if endometriosis isn't just a gynecologic condition, but a whole body ecosystem problem? From the gut microbiome to the lymphatic and vascular systems, we're uncovering how the body's networks may hold the clues to why symptoms spread, persist, and often differ from each other. How would you define systemic disease?

Speaker 2:

This is the problem of medicine. We still work in silos. When we think about endometriosis, doctors think it's pain and fertility. And the disease is beyond that. When we do surgery, we think healing is based on the surgical metrics that the surgeon perceived. She didn't bleed, we removed the disease. But endometriosis, when we talk about multisystemic, when we do a review of system, we look at the eyes, the nose, the breathing, the neurologic, the mental, physical, everything. Every system is assessed. When we look about endometriosis, endometriosis is beyond pelvic pain. It affects the gut, it affects the lung, it affects the breathing, it impacts mental health. So there are multiple systems affected. So now you wonder, okay, what is this guy saying? Bacteria and voodoo science. How does it work in real life? So we know there is something called estroblem. Estroblome is the metabolism of estrogen. Now, the uh bacteria, the opportunistic bacteria, they produce what we call beta-glucorin glucoronidase deconjugating enzyme. And this is a crazy name. But what does it do? This will impair the reabsorption and the recycling of estrogen through the liver. We call it enterohepatic cycle of estrogen. What it leads to, it leads to an increase in estrogen in the body. And we know endometriosis is an estrogen-dependent disease that leads to more uh inflammation and that leads to more pain and then uh deeply infiltrative endometriosis. It's beyond only a surgery. It's the endometriosis treatment is a multidisciplinary, comprehensive, and that requires an effort from a lot of other parties, the different doctors, different pelvicular therapists, holistic approaches to ensure that the patient's quality of life is restored in a healthy way. Because as surgeons, we do the surgery, patient goes home, but the patients probably deal with gas and bloating for a longer period after their surgery. So if you don't provide them something or help to restore their normal function, we would be suboptimally treating our patients. Patients with endometriosis tend to have more gut dysfunction, they are more constipated, they use overtly some laxative to go to the bathroom, and that leads to a major disruption. And that disruption creates more inflammation, and that inflammation creates poor you know, excreting of estrogen or metabolizing estrogen that will put them at the hyper-estrogenic states, and then there are a lot of consequences on the inflammation from that.

Speaker 4:

Dr. Gaby Moawad and I sit down to discuss this and so much more. So stick around. 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 Endo Battery, charging our lives when endometriosis drains us. Welcome back to Endo Battery. Grab your cup of coffee or your cup of tea and join me at the table. Today's guest is someone who's truly changing the landscape of endometriosis care. Professor Gaby Moawad is a globally recognized leader in robotic surgery and endometriosis management. He's a board-certified gynecologic surgeon and the founder of the Center for Endometriosis and Advanced Pelvic Surgery in Washington, D.C. Dr. Mawad has dedicated his career to advancing minimally invasive and robotic techniques, combining surgical innovation with deep, compassionate, patient-centered care. As director of robotic gynecologic surgery and associate professor at George Washington University, he's trained surgeons worldwide and helped redefine how we approach complex pelvic disease. He's been named Top Doctor in Washington, D.C. for nearly a decade and has authored over 125 peer-reviewed publications leading global conversations on endometriosis and surgical innovation. It's an honor to sit down and welcome a true pioneer and advocate for better outcomes for women everywhere. Please help me in welcoming Dr. Gaby Moawad. Thank you, Gaby, for sitting down with me today and coming all the way to beautiful Fort Collins to spend time with us and go over all the things that I have a burning question about. But one of the burning questions I want to start with is what made you so passionate to continue educating and educating yourself with endometriosis and pursuing greatness in endometriosis?

Speaker 2:

First, before I answer your question, I want to thank you and thank you for all the work you do through Endo village. It's great that we have advocacy groups like you being able to change the paradigm in patients' understanding and patient education. The answer to your question is a little bit complex. You know, every everything starts from lifetime experience, a personal journey. So through my encounters with healthcare as a patient before I became a doctor, I realized that listening to a patient and the trust in healthcare is at the core of the value of the care that we provide to patients. So whenever patients are dismissed, whenever patients are gaslit, that leads to poor care. And when I went through gynecology, I was appealed by it because it involves intricate surgical skills that can help making a change in the quality of life of patients. Through my journey, my studies, and then my fellowship in minimally invasive surgery, I realized there is a subset of patients, patients with endometriosis or with chronic pain. This subset was poorly understood. And for me, it was like a puzzle. Puzzle that made me delve into deciphering that code and understanding better how we can provide a better care for this subset of patients. That led to educating myself more about the disease, more about the impact of the disease, and then how can we provide a better quality of care for this subset of patients? And in addition to that, the challenges, the surgical challenges that endometriosis poses for a surgeon requires extensive training and standardization of the surgical care to have better and superior outcome for patients. All in all, here I am, 15 years after still dealing with my favorite group of patients, endometriosis patients.

Speaker 4:

And we thank you for that because it's not an easy population. Something we've talked about before is that there is this isn't brought up in medical school that often. This is not something that you learn a lot about in medical school. So for you to continue in that path of educating yourself and what we're going to get into is astonishing. Like I'm always blown away by your knowledge and the way that you dig deep into endometriosis and how to help your patients and patients worldwide, not just your patients, but everyone. It's just astonishing.

Speaker 2:

Well, I think if we go back to the basics of medicine, the main important rule of medicine is do no harm.

Speaker 4:

Right.

Speaker 2:

Do no harm is very deep because we're doing indirect harm by dismissing patients. And the harm does not need to be physical, it's psychological harm. Most of the patients with endometriosis are impacted by mental health problems because of these situations that we indirectly, with our poor understanding and poor knowledge and dismissal of patients, lead to this harm. So every doctor should understand the value of referral patients that they do not know or they don't understand their conditions, because there are a specialist, they could maybe provide a better care and not keep the patient for the sake of having a patience or having a thriving business rather than referring the patients to a specialist, and this way they will be completing their oath of do no harm.

Speaker 4:

Right. One of the things that's not well understood, I think, for most OBGYNs is the fact that endometriosis is a whole systemic disease. How would you define systemic disease? How would you phrase this to let people know like this is systemic and this is what systemic means?

Speaker 2:

This is the problem of medicine. We still work in silos. When we think about endometriosis, doctors think it's pain and fertility. And the disease is beyond that. When we do surgery, we think healing is based on the surgical metrics that the surgeon perceived. She didn't bleed, we removed the disease. But endometriosis, when we talk about multisystemic, when we do a review of system, we look at the eyes, the nose, the breathing, the neurologic, the mental, physical, everything. Every system is assessed. When we look about endometriosis, endometriosis is beyond pelvic pain. It affects the gut, it affects the lung, it affects the breathing, it impacts mental health. So there are multiple systems affected. And this is when we say multisystemic disease, because that disease is beyond the pelvis, is affecting multiple systems in the body.

Speaker 4:

Yeah. I mean it affects everything. Whole life. My motto, whole body, whole life, disease.

Speaker 2:

You know, I'm gonna spill a secret. I was not the same doctor five years ago or ten years ago. If I will be the same doctor five years from now, that means I would be failing myself and my patients. So we have to do a continuous learning, especially about the area of expertise or our niche or the stuff that we treat. And this will enable us to serve better our patients, to understand better the disease, and to contribute better to research and emerging therapies.

Speaker 4:

Yeah. And we should always strive for better.

Speaker 2:

Yes.

Speaker 4:

I mean, as a patient, we should strive for better and expect better.

Speaker 2:

That's why you have a crucial job of educating and empowering patients with endometriosis through advocacy group so they can choose better and they can enforce the paradigm change and push doctors to learn more and then serve them better and then help them with their disease to improve their quality of lives.

Speaker 4:

Yeah. It's it's invaluable to continue talking about it, but also pushing for better care for everyone. And I think that's something that I have really focused on is making sure that when I communicate, it's not just for me, it's for everyone. Because it takes the whole village, as you know. Yes, yes. Part of understanding um endo and its systemic nature and the ecosystem is understanding how it affects our whole body. Can we go into how it affects our microbiome? Because this is a big topic that's been talked about recently. How do we know about the way it affects our gut vaginally, all of that? What is the microbiome, first of all, and how does it affect us living within triosis?

Speaker 2:

So microbiome is a group of bacteria that coexist together and survive in the body cavity mainly, the gut, the mouth, the vagina. And then any disruption of that microbiome, we call it dysbiosis. When there is a problem in the numbers of bacteria, the prevalence of certain bacteria, the absence of certain bacteria, that leads to a lot of issues. So what we know uh from human studies, and I'm gonna stratify between the gut, the oral, and then the vaginal, uh, the gut microbiome, there are a group of bacteria that are called alpha taxa. Taxa is a group of bacteria. They are reduced in the gut endometriosis. And then the opportunistic bacteria or bacteria like enterobacteria say, this is a group of bacteria, prevotella, there are more prevalent in the body. And that has been correlated with pain and severity of the disease. Now, we go to the vagina. In basically all the study, there has been a decreased number of lactobacilli. Lactobacillus is a bacteria that is present in a healthy gut and then that's transmitted to the vagina. And then the bacteria that are that causes in many patients bacterial vaginosis or smelly discharge are more prevalent in the vagina in patients with endometriosis. And then some of those bacteria we know Gardnerella, Prevotella as well, these showed that they correlate also with the inflammation and the presence of endometriosis lesions. When we talk about the oral microbiome, we know that in patients with endometriosis, they have more gum issues. A lot of patients with endometriosis have bleeding gum, they have peridontitis. And this was this disruption was associated also with more inflammatory markers that we can detect from the saliva in patients with endometriosis. So now you wonder, okay, what is this guy saying? Bacteria and voodoo science. How does it work in real life? So we know there is something called estroblome. Estroblom is the metabolism of estrogen. Now, the uh bacteria, the opportunistic bacteria, they produce what we call beta-glucorin uh glucorinidase deconjugating enzyme. And this is a crazy name. But what does it do? This will impair the reabsorption and the recycling of estrogen through the liver. We call it the enterohepatic cycle of estrogen. What it leads to, it leads to an increase in estrogen in the body. And we know endometriosis is an estrogen-dependent disease that leads to more inflammation and that leads to more pain and then uh deeply infiltrative endometriosis. We go on the other end, those opportunistic bacteria, when they break down, they produce substances like LPS or lipopolysaccharides, and those promote inflammation as well and promote the aggressiveness of the lesions of endometriosis. And even in some studies, they found DNA of bacteria in endometriotic lesions. So there is a clear combination. Now go back to also the good bacteria produces what we call short chain fatty acids. And those short chain fatty acids can help protecting the gut barrier. So that's why we have leaky guts in the presence of the opportunistic bacteria and the absence of those bacteria that produces those. So these substances also promote further inflammation and it will become a cycle. So these are some of the reasons why the gut is extremely important and the microbiome is extremely important in reducing the inflammation and decreasing the progression and the pain in endometriosis.

Speaker 4:

Sounds really complex though.

Speaker 2:

It's not it's not really complex, but when we break it down and simplify it, we know there is a link. And then we know in a lot of studies, even though the studies need to be bigger and more stronger studies to try to identify different subtypes of endometriosis that would be affected. Because as I mentioned, this biosis or the imbalance of the bacteria could lead to the increase the disease burden and the pain and the infiltrativeness of the disease. But the the studying the genetics, how we treat the bacteria, probiotic, antibiotics, or even some enzymes that can help promoting the balance of the bacteria we have in our body. So that's why I encourage a lot of patients not to take here and there any medications, not to do all those enemas sometimes because they have a gut dysfunction, because these help flush the good bacteria, and one of the hardest things to restore is the microbiome. Restoring the balance takes a longer period of time. We see now we introduce in our practice as part of the recovery a gut recovery protocol because we believe it's beyond only a surgery. It's the endometriosis treatment is a multidisciplinary, comprehensive, and that requires an effort from a lot of other parties, the different doctors, different velvicular therapists, holistic approaches to ensure that the patient's quality of life is restored in a healthy way. Because as surgeons, we do the surgery, patient goes home, but the patients probably deal with gas and bloating for a longer period after their surgery. So if you don't provide them something or help to restore their normal function, we would be suboptimally treating our patients.

Speaker 4:

How could microbiome-based therapies realistically be implemented in metriosis care?

Speaker 2:

So again, as I said, the microbiome, now we understand more on the mechanism. Some of the proposed therapy, as I mentioned, targeting the opportunistic bacteria or the bad bacteria, trying to reinforce the action or restore the good bacteria with probiotic, for example, antibiotics try to kill the bad bacteria. Now, also targeting, I think the treatment is beyond maybe using some gene sequences of bacteria to diagnose the disease or diagnose the severity of the disease or identify subtypes of the disease that would cause more imbalance or dysbiosis. So these combined efforts that we still need to understand more the accurate impact and the different subtypes of endometriosis that could benefit from these kind of therapeutic.

Speaker 4:

Would antibiotics play a huge role in this? Because a lot of patients who have endometriosis are constantly put on antibiotics because they're told they have UTIs or they have who knows what else, right? We get all the diagnosis that you can think of. Does this impact that significantly?

Speaker 5:

Yes.

Speaker 4:

Therefore increasing the inflammation, the growth of endometriosis. Like it seems like it's a whole rabbit wheel of or hamster wheel of it. It's a vicious circle.

Speaker 2:

Yes, yes, of course. And that's why we know that disrupting that microbiome, whether through unnecessary antibiotics, whether through unnecessary intervention, you know, when you do endometriosis surgery or when you do sometimes an MRI, some patients are given laxatives. Patients with endometriosis tend to have more gut dysfunction, they are more constipated, they use overtly some laxative to go to the bathroom, and that leads to a major disruption. And that disruption creates more inflammation, and that inflammation creates poor excreting of estrogen or metabolizing estrogen that will put them at a hyper-estrogenic state, and then there are a lot of consequences on the inflammation from that. So it's all a vicious circle. That's why I believe endometriosis patients or endometriosis suspected patients need to at least see a specialist so they can create a strategy, a long-term strategy, a comprehensive strategy for their care. Because the care is beyond surgery, is beyond birth control pill, is beyond any uh of these interventions. It's more of a total body intervention.

Speaker 4:

I think that's something that we struggle with though, because most of the time we don't feel good on top of all of these other things that we're going through. So to rebuild or to make our gut feel better is a chore. It's a challenge.

Speaker 5:

Of course.

Speaker 4:

So that's what is challenging from the patient side is it's a constant trial and error for us. And it's we work so hard to just try to get to feel a little bit normal, to understand the gut and uh working with someone that can understand your gut microbiome better, I think could help us in the long run.

Speaker 2:

Yes, yes, definitely.

Speaker 4:

So we've talked about the invisible microbiome and shaping and everything else from the disease. Let's shift into something that's a little bit more visible, blood vessels. And we're gonna go into blood vessels and lymphatic pathways and how they might actually feed or spread with endometriosis.

Speaker 2:

Well, if you you're looking for complexity, here's your complex answer. So there are there are a few substances that I think every endometriosis patient should at least try to remember some names or understand what they do in endometriosis. Every endometriotic cell needs oxygen to grow, needs nutrients to grow, and then needs blood vessels to evacuate their waste. This is part of almost every cell in the body rather than endometriosis cells only. So in endometriosis cells, there are what we call VEGF, vascular endothelial growth factor, and then VEGF receptors. So there is a more higher prevalence of VEGF that help producing what we call angiogenesis and vasculogenesis, angiogenesis creating new blood vessels. So those lesions, because of the scarring that happens, they are in a hypoxic state or poor oxygen comes there. So they develop what we call hypoxia-induced factor, HIF alpha. That what this produces, it upregulates the receptor to attract more VEGF to produce more blood vessels. So that CIF is a substance that says, I don't have any vessels coming to bring me oxygen, so let's bring in more of the vascular endelial growth factor, so they produce more blood vessels. Now, in addition to that, the inflammatory mediators, interleukin A, tumor necrosis factor, they also promote inflammation and increase the VEGF in the endometriosis cells. So you can see how the circles is doing things, and the estrogen is present in high concentration in endometriosis lesions because there is the aromatase. They produce their own estrogen, the endometriosis cells. Now add to this through all that concoction, there is what we call MMPs. This is metalloproteinase. These are substances that break down the matrix around the cells for endometriosis, break down those proteins to create space for blood vessels to form. So now we see all those blood vessels have space to form, they start forming. And we can see a higher density even on imaging of endometriosis lesions when we do the contrast on MRI, they're hypervascularized. Now, throughout that whole medium, what happens? Those inflammation start promoting the bone marrow to produce EPCs, EPC endothelial progenitor cells. So these are cells that come and cheerlead the formation of vessels. So you have a higher number of those cells, so everybody is engaged to produce more vessels in the endometriosis lesions. Then we do say, oh, endometriosis lesions bleeds. Why? Because there is on every blood vessels a lining of cells. We can call them pericytes. Peri means near, they lines, those sites mean cells, they line the blood vessels. So there is an immature support of those pericytes. That's why those blood vessels are leaky, and that's why they tend to leak blood outside, and that's what they bleed. So you can see how that angiogenesis or the formation of blood vessel is led by inflammation, by hyperestrogenism, local hyperestrogenism in the lesions, by all those substances created to promote from the body, from the bone marrow, to promote further formations of immature cells that leads to bleeding and then engage further the body to inflame more.

Speaker 4:

Is that why we get variation in color for the lesions as well?

Speaker 2:

Yes, yes, yes, yes.

Speaker 4:

And you know, we hear about the powder burn lesions, but there's also a rainbow of color in lesions.

Speaker 2:

So when the blood leaks from those vessels, it is digested by the enzymes, and they're part of the metabolites of the digestion is hemosiderin and they deposit there and it gives the color of purple or powder burn lesion. And then you can have at different level vascular or scarring because whenever you produce inflammation, your body reacts to scarring. And since we have an immune dysfunction with endometriosis, so the scarring is there is an over-reaction to the inflammation with extensive scarring.

Speaker 3:

Yeah.

Speaker 2:

So it's mostly really well understood on the molecular level. And this is help us a lot in trying to figure out therapeutic approaches. So there have been trials that did target the VEGF or anti-angiogenic therapeutic medication. These showed promising results, but they led to poor wound healing, and then their impact on fertility is unknown. So further study maybe about the delivery method of those substances, maybe direct delivery through the lesions, might help improving with minimizing the systemic side effects. So when we understand what's causing what, we can further our research to try to help through targeted therapies or cellular therapies for endometriosis.

Speaker 4:

So fascinating. Does this also contribute, though, to what many call like the pelvic floor congestion, where the blood vessels are overactive in there or no, the pelvic floor congestion is from the mostly from the cytokines.

Speaker 2:

So the cytokines, the interleukins could produce dilations of the vessels. And then where is an overly inflammatory activity there that could lead to a dilation of the vessel, furthermore, to exchange those, bring in the soldier that fight inflammation and take away the uh substances or the metabolites of inflammation. It's also more correlated because we see on MRI the higher density in vessels. You know, now with machine learning and artificial intelligence, maybe these could help as a markers of diagnosis. Unfortunately, there's no standardization of the intensity of the signals yet. So there are a lot of work being done behind the scenes on these kind of molecular therapies or targeted therapies through precision medicine to help create a hope for future treatment of endometriosis.

Speaker 4:

It's interesting that we're thinking about treatment of endometriosis through a vascular pathway, because I would have never even thought of that.

Speaker 2:

Because every cell like needs food to grow, needs nutrients, needs oxygen, and then needs to discard their waste because the waste are toxic for the cells.

Speaker 3:

Right.

Speaker 2:

So whenever these we can cut the supply to those that would lead to uh cell apoptosis or death.

Speaker 4:

So fascinating. I would I just and that I've never put that together. Like it's not something that most people even think about.

Speaker 2:

When we this is extremely important because when we understand the disease better, we can understand its impact, we can start thinking about the different ways of therapeutic approaches, we can understand more how we can help treating that. So endometriosis is beyond, yes, I have pain or pain during the period is not normal. We all do agree on that, and this is an important part. But caring for endometriosis patients requires a further delving into the depth and the mechanisms of the disease to help contributing in the understanding and explaining the disease and helping to empower your patients to understand their body better and provide them better therapeutic approaches.

Speaker 4:

I'm just blown away. You just like something I Never even considered, so I'm excited that we're talking about this. What evidence is there for lymphatic involvement with endometriosis and the spread of endometriosis?

Speaker 2:

Same thing. Uh, there are a lot of studies that showed the presence of endometrial-like cells within the lymphatics, the presence of estrogen and progesterone receptors within those cells in the lymphatics that would make us understand how the disease can be transmitted. And in animal model, it was proven that the disease can be transmitted through distant organs. That would explain that endometriosis is beyond the pelvic disease. It could be transmitted to distant organs like the diaphragm, the lung, the brain, anywhere you believe, through the lymphatic channels. So it's not like something we really need to demonstrate. It was proven that this could be one of the theories of distant endometriosis spread.

Speaker 4:

This is very similar to the way they even test for cancers, which is ironic given the fact that endometriosis is not treated with the same respect as like a cancer would be in treatment and approaches, surgical and otherwise. I think it's fascinating that when we're looking at the lymphatic aspect of this, that we blow over the fact that it's very similar in regards to the way that cancer can progress.

Speaker 2:

For me, I I think the medical community needs to understand what appeals a lot of people to the cancer stuff is the fact there is the death halo.

Speaker 4:

Right.

Speaker 2:

But death is not physical only.

Speaker 4:

Yeah.

Speaker 2:

A lot of patients are dead in their relationship, are dead in their physical activity, are dead in their mental health. So we don't need to lose somebody physically to start putting more money onto the research. It's very important. But also we should look at whatever incapacitates our patients from doing daily activity and they will become socially dead, emotionally dead. And this is for me something that should be an alarm for all the medical community to open their eyes and to try to find funds to improve the research and the care of endometriosis.

Speaker 4:

Yes. And I I mean, we can get into this in another time, but one of the things that I've always said is that you can't specialize in something if you're trying to specialize in everything. And that's where I don't want to go to someone who doesn't specialize in such a complex disease when they know only a half a day in medical school from it or what they hear through Google. You know, like I want the research behind it too. I want to know that my provider is well informed and this is all they deal with.

Speaker 2:

I I think we need to start with a major definition, what is an expert? Because now an expert is a loosely used term. And then that is misleading a lot of patients. Expertise is beyond only just doing one thing, because you can do the same thing all the time. You become a technician if you don't understand it.

Speaker 5:

That's true.

Speaker 2:

And I think expertise, you can be an expert in a surgical procedure because if you do it over and over. But whenever it comes to endometriosis, the expertise should emanate not only from the surgery, but from understanding the disease, from trying to help publishing and increasing the global understanding of the disease. It's not how much followers I have on Instagram that makes me an expert, or how many posts do I post on Instagram makes me an expert. The expertise is beyond that. It it encompasses a multifaceted learning and skill acquiring and training and then knowing how to create strategy for patients that would involve a multidisciplinary and a comprehensive approach. And when we say multidisciplinary, we think only about the multidisciplinary surgical aspect. I have a colorectal and I have a urologist on board, and then that means I do multidisciplinary care. No.

Speaker 4:

Right.

Speaker 2:

Multidisciplinary care starting from providing the patient coaching and support through life, trying to explore functional medicine capabilities in helping patients, continuing with gut recovery protocols, helping the patient through mental health, cognitive behavioral therapies, helping the patient through pelvic floor therapy, long-term follow-up with patients. This is a multidisciplinary care. It's outside the OR. And the OR is extremely important, but it expands. Outside the OR, it expands to much more specialties beyond a colorectal or urologist. And this is multidisciplinary and comprehensive care.

Speaker 4:

Well, because we're, as we've talked about, it's a whole body issue. And so we're only addressing one area. There leaves room for more breakdown within your body. I mean, I just I this is something that I've learned in my journey with endometriosis. I was very much presented that endometriosis was, you know, you can do X, Y, and Z and get rid of it. But no one ever touched on the mental aspect of it, the emotional aspect of it, the relational aspect of it, which you need someone that can help you navigate that and someone that's specialized in chronic illness or trauma therapies. And then you also have, you know, relational therapies that suffer from this. And so if you don't address those, you're gonna always feel in this state of fight or flight, you know? I think that I really think a lot of it, we do have to address like the emotional component to it, the mental component.

Speaker 2:

What does emotion do to you? What does stress do to you? Emotion is a stress on your body. Absolutely. Stress increases your cortisol. Cortisol is a pro-inflammatory hormone. Right. So you're inducing more inflammation that worsens your pain. This is a vicious circle, comes back to the same thing. More inflammation, more pain, more disease, more impact on mental health. So everybody is living into that vicious cycle that someone needs to break. And now this is a message for endometriosis patients. The the treatment is frustrating of endometriosis, because the treatment is long, sternuous, time consuming, effort consuming. So I will encourage a lot of patients with endometriosis to create a strategy, a long-term strategy with their doctor. Because this is what minimizes the unnecessary intervention, the fragmented care of endometriosis patients, is when somebody put a strategy and then all the parties of the care team can work through that strategy. Because if you've ever been told that the surgery is the only treatment for endometriosis, probably they're missing a big part of the story. If you're ever told that all your problems will go away, endometriosis impacts a lot of systems in the body, and that impact is irreversible in the absence of the disease. We need to intervene to restore that impact. When you break your leg, they take an x-ray, they say, Oh, you look fantastic, your leg heal. You cannot go run a marathon. There needs to be a lot of training, a lot of rehab to be able to get back to the same pace and be able to run them. And this is the same. Endometriosis is a life marathon for the patients. Find a good coach that will walk you through that training so you can be able to do whatever you want to do and restore your quality of life.

Speaker 4:

The other thing I would say to that though is that that coach can change in different stages of your journey. Of course. And I think it should at some point because you don't want to be seeing someone and doing the same thing over and over again with minimal to no results. That's when it's okay to look for someone new. And I think that we get so stuck in being loyal to those who we first find and we have relationship with. And I'm not saying that you need to sever your relationship. I'm just saying it's okay to find someone that will serve you better.

Speaker 2:

No, no, I completely agree with you. That's why I believe educating the patient about the long-term strategy is the most powerful tool because they can understand what they should do, what is the next step rather than I've done this, but no result. What should I do next?

Speaker 4:

Yeah. Talking about all of that, and we've talked about it being a whole lifelong journey and going back to the lymphatic pathways, if those are involved, does this change how we think about reoccurrence?

Speaker 2:

Reoccurrence is like you get me started on the most complex topic. Reoccurrence is a very complex issue. Reoccurrence is is extremely poorly understood. Because when we do research on endometriosis, we do research on endometriosis as a whole. We don't have any subtypes of the disease, we don't have any yet well-established understanding of the phenotypes of the disease. How does the disease express it? How is it why is it deeply infiltrative in you? Why does it affect the bowel in you? Why doesn't it affect severity of the disease, the genetics and the gene expression of everybody? Also, like the completeness of your therapy, your therapeutic approaches plays a role in persistence rather than recurrence, but we call it recurrence most of the time. So it's a multifaceted complex situation. Yes, definitely, lymphatic could play a role, inflammation, understanding the inflammation, the immune system plays a tremendous role in that. So it's a it's a multifactorial. Most of the stuff cannot be answered as of now by one theory or by one causality equation. So there are multiple factors that come together that we still poorly understand that could increase the chances of recurrence for some patients versus not for other patients.

Speaker 4:

Yeah. It's it's and I think that we oversimplify it sometimes in saying if you just get the right treatment, if you just get the right surgeon, then you won't have any recurrence. And that's just not true. We're too complex for that.

Speaker 2:

No, it's you know, there are multiple inter interventions that we can do, but the most important thing is trying to educate the patient. Because patients, when we talk about recurrence, patients understand there is no cure for this disease. And patients understand there is a chance of recurrence. But trying to help improving the quality of life and minimizing the unnecessary surgery is something, is a goal that could help tremendously impact their quality of life. So if a patient require another surgery in five years or ten years, but in the interim time they had a very good quality of life, patients are completely on board. They understand really well that. But if a patient has to do surgery every six months and most of them are unnecessary or emanate from the poor understanding of the disease or poor implementing of long-term therapeutic or uh approaches, this will lead to a lot of frustration and this will lead to a lot of changing doctors. And so the most important thing we can do as a healthcare provider, advocacy group, is to try to educate the patients about the real reality of the disease.

Speaker 5:

Yes.

Speaker 2:

Rather than taking patients' emotional vulnerability to provide them a cheerleading support. Patients with endometriosis, they need more understanding. They don't need cheerleader. Cheerleading is sometimes important. But simplifying endometriosis, to go, girl, be strong, that kind of approach, which is, I agree, it's important to lift up people sometimes. But the most empowering comes from trying to understand the disease and explain it to the patient, trying to understand their body, trying to individualize their treatment, trying to provide them a longer-term strategy, how they can cope with such a disease.

Speaker 4:

Right. That's something that I didn't have. It was a good explanation when I started. And I think part of advocacy is being aware of your role in helping people find a better quality of life. Again, cheerleading is great and validation is wonderful. Of course. But at the end of the day, if you don't have steps moving forward, you're not going to get a better quality of life. If you don't have the support to say, have you looked at X, Y, and Z as a way to help X, Y, and Z is very different for everyone. But I think that's where community matters. That's where stepping into a space where others have lived experience can make a huge difference in the way that you navigate a disease that consumes so much of our lives and so much of our stories. But it doesn't have to all the time. That's the other thing.

Speaker 2:

And I say it all the time, but the trust is established at the beginning by listening and validating. This is something that should be done. But beyond that, the work will start by educating, empowering through science, through evidence, through different therapeutic approach. And the support continues by providing a longer term strategies for patients with endometriosis.

Speaker 4:

Yeah. And the more we look at it that way, the better we'll be. Because we'll be able to figure it out and have steps in place. I know I have I always thought this is where this is what was so frustrating in this disease. I thought once I had surgery, I was gonna be good. I'd magically wake up and be healed. And I wouldn't have any other issues. I wouldn't have any pain. And the mental toll and the emotional toll it took on me to realize that that wasn't going to be the case for me was really hard. But when I came to terms and realized that there was a community there to support me who understood me, it has changed so much. And I think it changes your health outlook too to have that, to have a good team behind you, have providers who believe you, who have providers that don't look at you as if you're crazy when you tell them really weird things that happen to you, you know? And so I think it does make a huge difference. But to go into that realistically, what does this disease realistically look like? You know, and I think that's when we talk about all these different variations and facets of it, it's to bring evidence and to inform so that you don't have this false sense of hope.

Speaker 2:

Because you know, if you're gonna break down gaslighting, could be directly, gaslighting could be saying like, oh no, you don't have anything, you're crazy, but could be indirectly by giving you the false hope or by giving you the wrong information.

Speaker 4:

Yeah, absolutely.

Speaker 2:

So gaslighting is not always intentional. Yes, it is sometimes unintentional by creating a certain excuse to prove to your patients you understand more about medicine, and then this implementing wrong information in your patients, making them disbelieve the reality sometimes, and then that will create either further therapeutic challenges with the patients when they understand an idea that was given by a random doctor. Because for me, when I go to the doctor, whatever they tell you impacts you far more to what they believe they say. They forgot what they said. But the idea that I can carry through years is the idea that continues to gaslight me or torture me if it is based on erroneous or false information.

Speaker 4:

Yeah. Which is something I never even I didn't even hear the word gaslighting until like, you know, three years ago.

Speaker 5:

Yeah.

Speaker 4:

It wasn't as it wasn't, but I wish I would have known that it wasn't always my fault. You know, I wish I would have known. Like it is based on with good intentions. Like my my provider had good intentions, but bad information. So I think that there's so much to play in patient care. It's not, it's not linear.

Speaker 2:

It's okay to tell your patient, like, I don't know.

Speaker 4:

Yeah.

Speaker 2:

Let me Google it. Sometimes I would say, like, what is this medication? I don't know. Let me Google it. Or let me understand more about it so I can answer your question. It's okay. Patients don't look at us knowing that we should know everything. And then this should be a good learning experience for all the doctors. They learn more from their patients. Because when patients bring in something that should incite something to click in your brain to go research this, try to find answers so you can try to get back to your patients and try to help them.

Speaker 4:

Yeah. I wish, I wish so many times the doctor would be like, you know, I'm really not sure. Instead of like leaving with bad information. And then here's the other part of this. When I was given bad information, I wanted to tell everyone this bad information because I finally had information. Yes. So that it's that cycle, right? It's a it's a toxic cycle, but it's a cycle nonetheless. And I I just which is why I'm doing what I'm doing, because I wanted to break this cycle of bad information from just me. You know, I I think that I had such guilt over what I was told that I wanted to express to everyone. And I'm like, I can't do that anymore. It's so harmful. But that's another story for another day. Yeah. We've touched on how endo can spread and sustain itself, but what about how it affects the whole body's energy system, which is something that many of us struggle with? How might the metabolic dysfunction explain symptoms like chronic fatigue or fatigue in general?

Speaker 2:

We'll we'll all go back to the inflammation. The inflammation mediators or the substances produced when you have inflammation like cytokine, TNF alpha, IL6, interleukin 6, interleukin 1 beta, they do affect the insulin signaling and they create an insulin resistance and they can impair the glucose. So the first thing. Second thing, estrogen is known. The high levels of estrogen present in endometriosis patients also produces an abnormal fat tissue deposition. So that leads to insulin resistance and that leads to obesity.

Speaker 5:

Right.

Speaker 2:

Add to this the adipoine system, which is two main hormones, the leptin and adiponectin, both hormones. The adiponectin plays a role in inflammation, it decreases the inflammation. So in endometriosis patients, it's slower because of the inflammation. And the leptin, the most important, the leptin suppresses your appetite and increases your energy. And in endometriosis patients, the leptin is low as well. So you have more appetite and then you have reduced energy. And that leads to increase in weight. Add to this the inflammation impacts the mitochondria energy expenditure. So the mitochondria are small organs that are contained in the cells. They produce energy. So whenever there is a dysfunction, you feel fatigued.

Speaker 4:

Yeah.

Speaker 2:

You feel drained, whatever you do. So all this combined, you have less ability to do activity, you have abnormal deposition of fat, you have an increased weight, you have uh an impaired insulin resistance, you have impaired glucose or elevated glucose, even sometimes diabetes, all that together leads to a metabolic syndrome. So it's uh everything is interconnected in a way the body works in a way that is easily understood if you search for the answers. And then all the body have messengers that talk to each other. And whenever we create a disruption, that leads to a cascade of events that will affect multiple systems.

Speaker 4:

But it also explains for a lot of people the other side of this where it does play with you mentally. Again, it's the cycle, right? And we can't always control that.

Speaker 2:

This is the circle that you need to break it at one point. Either you start breaking it with surgery by removing the disease, or you start breaking it with interventions that helps doing melt mental health support is extremely important into managing or encouraging because if you're depressed, whatever they offer you, I tried it before, it's not gonna work. This will not do stuff. So patients with endometriosis, we have to understand there are a lot of traumas from pain, from the disease, from the impact, societal impact of the disease, that lead to behavioral changes sometimes. Sometimes they dismiss the therapy because they're being gaslit or they've been burned before or they've been traumatized by care.

Speaker 3:

Right.

Speaker 2:

So that's why a cognitive behavioral intervention can help restoring that mental ability to just pull up your sleeve and get to work with the right provider that will support them with the right support network. So what we thought these are things that happen, it's okay. No, it's not okay. There is a treatment for that, there is a care for that, there is a light at the end of the tunnel, but we need to work together, we need to partner with the patients to get to the end of the tunnel.

Speaker 4:

When you work with patients or when you approach have patients with a metabolic disorder, what are some practical steps maybe for them to heal from that?

Speaker 2:

So at the beginning, when we start, most of the patients that come see me are in pain, they have endometriosis. So there is a source of inflammation. And then we need to reduce that source of inflammation by intervening and removing the lesions. So we need to break or to minimize the generator of inflammation. Once you take away the generator of the inflammation, you can do far more interventions that will be minimalistic, that would lead to a better perception for patients and improvement in quality of life. If you, for example, uh you cut your muscle, right? You cannot go, even if you do rehabilitation, you need first to suture that muscle, rehabilitate from that before you run. So we cannot start running thinking like only in the movie that happens they shoot the hero and they continue to run. I don't understand this, but in real life, no, we fix the uh issue and then we run. It's amazing. They get beaten if I uh hit my elbow somewhere, I'm sitting for two minutes. I get beaten to death and they still run.

Speaker 4:

I know. I would like to just be able to go up the stairs without like groaning and moaning to get up there, you know. But I do think that that's something that I always have said show yourself grace because it's not an overnight thing. You can't do you can't heal overnight. Your body is not meant to do that. It didn't break overnight either, right? Like we shouldn't expect it to heal overnight.

Speaker 2:

Yes, yes. And as I mentioned again, in the absence of the disease, the sequelae of endometriosis need to be rehabilitated and treated separately. Because even though in some young and healthy patients, your body restores itself, but it takes a longer period of time in patients who have an impact on their immune system.

Speaker 5:

Yeah.

Speaker 2:

Like at my age, I used to twist my leg and then go play soccer the next day. But now if you twist your leg, you put the boots, you it doesn't our immune system is getting old, but imagine if the immune system is impacted, and that leads to a cascade of multiple dysfunctions. And that's why the normal healing process is lengthier than somebody who has an intact immune system.

Speaker 4:

Yeah. Or is younger. We won't talk about that. Thank you for taking the time coming out here and spending this quality time with us. I'm excited to see what's next. We'll do it together. If this episode helped recharge your Endo battery, please take a moment to like and subscribe on YouTube. It really helps others in our community find these resources too. And if you're listening on a podcast app, leave a quick rating or a comment to show what resonated with you. Every bit of engagement helps us reach more people living with endometriosis and chronic illness and reminds them they're not alone. Until next time, continue advocating for you and for others.