What Is Endometriosis? 4 Surgeons Explain the Symptoms, Misdiagnosis, and Whole-Body Impact

30:26And then I think when I examine someone and they have an obliterated cul-de-sac, which is the fusion of the vagina and the rectum, and they have deep fibrotic disease and nodules, I can almost with 100 % Verity say that they have endometriosis without doing surgery. Why is this lie still so commonly believed in medicine that the only way to know if someone has endometriosis is just to explore with a little peekaboo surgery? Well, there's multiple factors, right? So unfortunately in medicine, if you're in mainstream medicine, you're hired by a clinic that wants you to see 30 patients a day. So you cannot really adequately take a history, listen to someone's story, understand their pain, think about their family history, adequately look through their records, do your own ultrasound, review an MRI, look at the images.

31:19So that's one thing. And also, as we've already mentioned, poor education around the disease itself. It's much easier just to say, wow, you have some painful periods. Let me give you a prescription for low estrin. Do you feel like it's outdated education or it's inexperienced clinicians? Or if it's just because of the time constraints that really the insurance model has put on physicians? Or is it all of the above? Indeed. I think it's all of the above. And not just the insurance, but CEOs of organizations who are making millions of dollars. And I don't think most physicians are. Yeah. And that is something that actually I asked my audience just the other day, what was the moment you lost trust in medicine?

32:03And there was a nurse who made a comment. It was when the CEOs and the administrators were elevated above the physicians in terms of clinical diagnosis, care for patients, and even valuation in terms of pay. It all became about how do you milk it and make the most money off this patient, not how do you actually do right and first do no harm. And I think that's important for people to hear, especially because there's a lot of clinicians who listen to this episode and to listen to this podcast all together. They're truly heroes, I think, in women's medicine, trying to educate themselves in any way they can to better themselves.

32:40But not everybody is able to do that or even willing to do that. And I think it's really easy as patients for us to hate the doctor because it's who we see, it's the face we have, and not realize that there's an entire, they're basically puppeteer above it all, pulling the strings. Endometriosis doesn't always show up the way people expect it to. And too many women are left managing symptoms without a full evaluation of what is actually happening. Endoglobal specializes in complex endometriosis care, including advanced imaging review, multidisciplinary evaluation, and excision-focused surgical planning.

33:18You deserve a team trained to recognize the full scope of this disease. To learn more or schedule a consultation, visit drbrighton.com slash endoglobal. That's D-R-B-R-I-G-H-T-E-N.com slash E-N-D-O-G-L-O-B-A-L. Can I share a illustration? So I saw this patient once a few years ago and I did an ultrasound and I could see this big nodule on her rectum And so we were trying to get authorization from her insurance To do the surgery and the insurance company said no We won't authorize it. You have to do a peer-to-peer So I get on the phone with some doctor from the insurance company who was not a gynecologist by the way and She says you don't how can you get a how can I give you an authorization for a bowel resection when you don't have a diagnosis of endometriosis?

34:18You need to make the diagnosis first. I'm like, I have the diagnosis. I have the ultrasound images. And she's like, well, you have to make the diagnosis. I don't believe your ultrasound. I said, are you telling me that you want me to do a diagnostic laparoscopy to take pictures and then send you the pictures of what I already know that I'm going to find. And you're going to make this girl go through two surgeries and you're going to have to pay for two surgeries because then we're going to find the mass. She's like, well, if that's what you have to do, that's what you have to do. And it wasn't until my, um, my office manager.

35:01Shanti's so mad at this story right now. It wasn't deep crap. My office manager was talking to somebody else at the insurance company about this case. And whoever she happened to get on the phone said, oh, my goodness, I have endometriosis. I will take care of this for you. And so she pushed it through. Oh, my God. Okay. So endometriosis patients, we all need to get into positions of authority to make these calls. Jillian, can I add something to that? Yeah, go for it. Because, I mean, I just think that's such crap. Like, honestly, there are validated protocols with a high sensitivity and specificity showing that you can diagnose deep infiltrating endometriosis, especially on the bowel.

35:42So that is that it correlates highly with the diagnosis in surgery. And there are, you know, scientific studies showing that. So there is no reason to make someone go through a diagnostic surgery or to deny them the diagnosis. You need to listen to science. Ah, snap. Well, you don't want to deny the patient the diagnosis. Instead of the economists, you know. And the accountants. Well, let me ask you, Vicki, why is it that women are consistently told that imaging has no value? I mean, I even have gynecologists who will come on to my social media and be like, you are a quack forever saying women should get imaging for their endometriosis.

36:21And I'm like, you, sir, need to step down and learn your place in medicine because endometriosis expert you are not. I think that it has not been widely adopted in the United States, but there is a protocol called the IDEA protocol that has been validated. And it's used all over Europe and all over Latin America. So we're far behind. Explain the IDEA so everyone understands. Yeah, so the IDEA protocol is an ultrasound protocol. It's done transvaginally. And it's a step-by-step ultrasound that allows you to look at the bowel, the bladder, the urinary tract. You can even look at the sacral nerve roots.

36:55you have to have the training to do that, but you can diagnose severe endometriosis. I will say that mild or superficial endometriosis, you cannot diagnose, but 20 % of our patients have a more severe form of it. So at least 20 % of them can get a diagnosis with ultrasound and it's used all over the world, but in the US it's not picked up. Again, it has to do with reimbursement. It's a dynamic ultrasound and the surgeons do it themselves. Yes. And so by by us doing it, we get an idea. How does the bladder move with respect to the uterus? How does the rectum move with respect to the uterus? How do the ovaries move?

37:33Where is their fibrosis? Like Shanti was saying, if you examine somebody that has restricted motion on one side and free motion on the other side, then you pretty much know something is causing this fibrotic change. And 99 times out of 100, it's endo. And so it gives us so much more information. I think that they tell patients that the imaging have no benefits because they don't know how to interpret it. Even radiologists don't know about endo. So even if you present or if you go to some radiologists that are not aware of this, I don't know if this is true, but sometimes the eye cannot see what the mind doesn't know.

38:18And so if they don't know and educate themselves about that, there might be something that they don't know, that it might know as endometriosis, they are not going to be able to see it. You have to train yourself. And it's accepting the fact that you didn't know this. So that can be hard for some people. Oh, I want to add something. And there are courses. There's Matthew Leonardi has one in Canada. There's the ESWAG. Oh my gosh, ESWAG is the International Society for Gynecologic Ultrasound. There are so many ways for you to learn this. The problem is reimbursement, but there are also MRI protocols.

38:58So there are MRI protocols. There's different ways you can diagnose this before, or at least have an idea of the extent of the disease. I have a question for Ana. Ana, do you read your own MRIs for neuropelviology? Yes, I do. But I also have the help of one of our radiologists because I always like to, I have learned so much from her. It's a back and forth thing because I have to do a clinical exam first, as we all do in our patients with endometriosis, to find the cause of the pain. And then I'm feeling this in this point. What can you see in the images and what is shown this? Because there are special imaging for nerves, but it's really, I was telling you this about, like it's like a 3D version of like the baby's face.

39:42You cannot diagnose properly with this. It's a very beautiful image and sometimes patients have to pay extra for them, but you don't really need them. If you're going to make a diagnosis, sometimes with a good MRI focused on some parts of the nerves. So here our patients get the whole MRI with this focus. And then after our exam, we go back into the MRI and I'm looking at the images and she's looking at the images. I think multidisciplinary care is something like basic for our patients. And it's really important to lay on other people that know more than you, especially with imaging. So I can, is this what I'm seeing?

40:22What are you seeing? And this is what the thing that I examine in my patient, and that is getting the best care. Can you explain to the listeners your MRI protocol as well? So, you know, some listeners will have only been, will be told no imaging, will be told ultrasound only, but there is additional imaging that can be done with an MRI. So can you explain that for listeners? There are doctors who are really good at doing imaging by ultrasound. We know Dr. Carlos Trippia in Brazil. He's an anatomist with the ultrasound. It's impressive. He can show you the muscles, the layers of the anal sphincters.

40:58He can show you anything that you like. But not everybody has this training. And ultrasound is operator-dependent. It is cheaper, but it's operator-dependent. And MRIs, we can do the same protocol in every patient. So that's why it's helping us here. Because here we can have an MRI. And you know that MRIs have a gray pattern. So if you add white into it, grays are going to be more noticeable. So we use endovaginal gel and also rectal gel. So we can see a lot better. We would do both without gel and with gel. So you can see how structures move in one another. And you have fibrosis in the arteriosacral ligaments.

41:40You can see them. Also rectal nodules are so much easier to see if they have nothing in their rectum and there's gel on it. It looks more beautiful, but it's easier to diagnose this way. I want to, so thank you for that. I want to talk about how endometriosis is diagnosed because I feel like we're dancing around that. I want to be very specific. But first, Vicky, you mentioned superficial versus deep infiltrating endometriosis. I don't think you actually said that second part, but I want you to explain that to people because this is where people will say like, oh, imaging can never show endometriosis, but there's nuance here.

42:16There's a lot of nuance. So there's three different types of endometriosis. There's deep infiltrating endometriosis, which is the kind you can see on imaging very easily. Endometriomas, which are the ovarian cysts that endometriosis can cause, you can see those on imaging easily. Then there's superficial endometriosis, which can be exquisitely painful, but it's not as easy to see on imaging. There are some MRI protocols that have these very fine cuts that can identify superficial lesions. Matthew Leonardi, I mentioned him again in Canada. He has techniques to see superficial lesions using ultrasound, but you cannot exclude superficial endometriosis with any imaging.

42:57So even if your imaging is completely normal, you can't say this patient doesn't have superficial disease. I would like to hear from Cindy, what are the magic words that a patient can use who's been suffering for years to get imaging when their doctor says the only way to diagnose this is to do labroscopy. How can they advocate for themselves to get that imaging? Well, I think one magic word is I'm worried my kidney's going to die because I think my ureters occluded.

43:30I think that they just need to tell the doctor, I would like you to order me an MRI. If that doctor can't do their own ultrasound, because ultrasounds at hospitals done by techs, read by radiologists who are not experts in endometriosis, will not see anything other than an endometrioma, pretty much. Half of the adenomyosis that we see on our own ultrasounds is not called by radiologists. The uterus has to be two, three times bigger than it ought to be before a radiologist will think about calling something adenomyosis. They won't see rectal nodules because they don't look at the rectum. They don't understand that they can look at the rectum.

44:28And so asking for an ultrasound and them sending you to the local hospital where a tech does the exam isn't really going to help. It's not going to see if an ovary is stuck down. Most of them, every once in a while, you'll see that somebody describe a peritoneal inclusion cyst, which is like a little filmy layer of saran wrap that happens because of the inflammatory response of the body that traps fluid and can trap the ovary in the tube. And you can see those on ultrasound. And those are usually diagnostic of endometriosis unless somebody's had prior surgery or a significant pelvic infection like chlamydia.

45:12Sometimes you can have that from a sequela from that. But again, MRI is so technique dependent. And in the U.S., we do not have specialty radiologists except for in very few locations. There's a guy at Mayo Scottsdale who is wonderful. I don't remember his name. Oh, I just know the woman, Wendy. I think her name is Van Buren and Luciana Shami in Boston. But there are very few endo experts. And the story I was going to tell is that a few months ago, I was on NPR in Seattle after Bindi Irwin announced that she had endometriosis. And so they decided that they should talk about it. It's always a celebrity.

46:03And the rest of us are like, do we not matter? So she asked me about imaging. And I said, I do my own ultrasounds. But I rarely order MRIs to see endometriosis unless I have a very specific question. And the reason is the vast majority of them don't understand endometriosis. They don't understand what the pelvis looks like in endo, and they don't know what they're seeing. It's like you said. The eyes cannot see, but the mind doesn't know. And it's so eloquent. She's just beautiful in every way. But so anyways, I said radiologists don't understand endo. So the next day, I get an email from this guy who's a professor of radiology at University of Washington, demanding that I retract the statement.

46:49And how dare I say this? What evidence do I have? So I wrote back to him, and it was very nice. And I said, I appreciate your concern, but this is why I said what I said. And I went into what I just said about if you get an ultrasound from a hospital done by a tech, read by a radiologist, they don't look at the colon. They don't do a dynamic exam and talk about how things move. And they rarely will see a mass in the bladder, although that's quite rare. And sometimes they will see something, but not usually. And then I wrote to him about the MRI reads that I had seen recently. And just the day before, I had a patient with a huge five-centimeter rectal nodule that was as obvious as the nose on your face.

47:44It was the first thing I saw when I put the ultrasound probe in, and it was massive. And so she had had an MRI, and the reading said there was tethering of the cervix to the rectum and the uterus sacral ligament. That's it. Visualize segments of bowel normal. And so I cut out the clip. I screenshotted the read of the MRI. And I also sent him a picture of my ultrasound of this big mass. And I said, I would love to help you teach your residents what endo looks like. I can show surgical videos. I can show them various manifestations of intestinal endo. I would love to help you educate the next generation of radiologists.

48:36I never heard back from them. If your endometriosis pain is still ruining your life, something was missed. This disease is complex, and without specialized evaluation, it's easy to manage symptoms without addressing the full scope of endometriosis. endometriosis. Endoglobal focuses specifically on advanced imaging review and excision planning, and they offer affordable options, including a complimentary consultation to evaluate your case and determine whether surgery is appropriate for you. You do not have to guess on your next step. Visit drbrighton.com slash endoglobal to book your complimentary consult today.

49:18That's D-R-B-R-I-G-H-T-E-N dot com slash E-N-D-O-G-L-O-B-A-L. Yeah, because my question to him is like, what are you doing to ensure that radiologists actually know how to read this? And, you know, I've shared with my listeners before, I was called attention seeking by the radiologist that I challenged who said, you have no endometriosis, you don't have adenomyosis. I'm like, I can see my adenomyosis. That's not my training. That's your training. And if I can see it, it's a problem. He was like, it's not there. My PCP, she was trying to fight with him. And then finally, it was Ram Cabrera that Ana practices with.

50:05And I sent it to him and he's like, let me send it to my radiologist. And they're like, girl, let me tell you a story about your endo. There's so much. I'm like, I knew it. I knew it. But the limiting factor is radiologists. And it sounds like, you know, for patients getting with an actual endometriosis excision surgeon who's specialized in it is the best way to get imaging, to get the ultrasound done right. And that the MRI is only as good as the person who's reading it. So how can we ensure that we can get the MRI to a radiologist who's worth it, who's worth our time, right? And I don't have to argue.

50:43And then also, like, how do we get more radiologists invested. Shanti, if you want to take that. Well, so this is a little bit of a side take from what you're saying, and that is that the European guidelines, so European Society of Reproductive Endocrinology, ESRI, has a guideline that if a woman has severe pelvic pain, suspected endometriosis, that the first line is an MRI, and that if the MRI is negative, they absolutely need surgery because they have pain that's unexplained. The MRI doesn't show anything. And if they have an MRI that shows an endometrioma or adenomyosis or tethering of the utero-sacral ligament or invasion of the bowel, then they know that at least and they're prepared.

51:25Perhaps also their radiologists seem to have a lot of training in endometriosis. But if that's the standard of care in a huge part of the world, that first line is get an MRI, even if our radiologists aren't able to pick up endo as easily, at least they're saying it's negative. And the next step then is evaluation with a specialist. So the value of a negative MRI actually is not a bad thing. But only if it really is negative. This is true, of course. Because in, like I operated on a girl not long ago, she was 18 or 19, and she had had a diagnostic laparoscopy probably six months before I operated on her.

52:10And they said, oh, it's normal. Everything looks fine. I flipped up the uterus sacral ligament and she had a big peritoneal pocket with about a centimeter and a half nodule of endo in the cul-de-sac. I mean, she had endo everywhere. She also had some more juvenile appearing endo other places. My point is, is that it's worse for somebody to have an intervention, whether it's a radiologic imaging or a diagnostic laparoscopy and be told you don't have disease when they actually do, because then they're going to say, well, I don't know why I have pain because it can't be endo because I had a negative study or I had a negative laparoscopy.

52:54I think the point... And then it really messes with their head. The European point is that if the MRI is negative, there may well still be endometriosis, and you need to go to the next step because we didn't find it. But there's a baseline belief that the pain is caused by something. But in the U.S., doctors see a negative imaging report and they say you don't have endo. I think that's a good point that Shanti is making is that the algorithm in Europe is if it's negative, she still needs help. And in the U.S., it's to your point, Cindy, is that if it's negative, what's negative? What are you whining about?

53:34Right. And it's kind of what we've talked about. So it sounds like, you know, in my question of how do we get to the diagnosis of endometriosis, there is meeting with a specialist would be the ideal place to start. But we need to have a physical exam. There needs to be imaging. But even if your imaging is negative, that doesn't mean you don't have endometriosis and you may very well need to go the next step in surgery. And we're going to go into what that next step is in surgery in an upcoming episode. But I want to define endometriosis for people who are listening. So let me ask you, how do you define endometriosis in a way that actually reflects what you see in surgery, not what the textbooks are teaching clinicians?

54:16It's a chronic systemic inflammatory disease. Beautiful. Because sometimes if it's not about fertility, you don't even need treatment. And it's something that I've seen my patients deal with. I think calling it a chronic inflammatory disease, I try to explain my patients. It's like having a cold that never leaves because your immune system is always active and it's always fighting. That's why fatigue is so common in our patients. That's why so many symptoms that are not just explained by a pelvic disease happen to them. Because they are sometimes really frustrated because they want to handle everything and want to control everything.

54:58and still we're failing them because we're not giving them the right answers and the right treatment. But it's because we're not offering or clinicians that don't know this disease are not offering a treatment for a chronic systemic disease that is taking their whole bodies and sometimes even their lives. Some of them will feel like they have the flu when their endo is flaring, their skin hurts. And they're like, why do I feel this way? I'm like, it's inflammation. and just going crazy. Yeah, but that was beautifully put, Ana. Yeah. Well, let me ask then, Ana, why do you think it is so dangerous that endometriosis is still framed as a reproductive condition or a pelvic condition only?

55:44For us, it's one, the delay on the diagnosis and also the treatment. Because as they were saying before, some patients do not have any pain and their only symptom is infertility not explained. And so there's like, unless you want to have babies, you're going to have a treatment. Women are so much more than baby makers and they do need treatment even before they want to have kids. So if we affront and if we start treating teenagers, as you were saying, I think we're going to have 30s and 40s women who are healthier because we didn't shove contraceptives in their throats and their teens. and we listen to them and we start looking for the causes of their pain.

56:28Can I ask you, I know Vicky you have something to add, but I want to ask you, infertility in the absence of pain, how often is unexplained infertility estimated to be endometriosis related? We know that 50 % of patients that go to a fertility clinic are going to have adeno or endometriosis or both. At least. At least. And we have a big problem in the United States that private equity groups have now moved into the fertility arena. And so we're seeing less incentive to diagnose and more incentive to put them through multiple cycles, which we know the exposure of the hormones that women are undergoing through IVF can make endometriosis so much worse and even make the uterus no longer inhabitable.

57:15And I say that as a woman who went through IVF who didn't know she had endometriosis until my third retrieval and I was in the worst pain of my life and couldn't move for three weeks. And I'm like, wow, it would have been really great had anyone investigated this. But what they said to me is, you no longer have period pain. It could never be endometriosis. Yes. Also for patients, I think it's really helpful if we talk about the five this, because if you have dysmenorrhea, that it's pain during your menstrual cycle, dysuria, sometimes the pain in your bladder doesn't get like really think about or it's like an afterthought for some surgeons or for some doctors that doesn't know.

57:54And they do not ask the proper questions. Because if I tell a patient, do you have any pain while you breathe, that while you are peeing, they're going to say, no, I don't have any pain when I'm trying to urinate. So I would tell them, okay, if you sit in a toilet, do you have to wait a little and then the pee will start? Oh, yes, that happens to me. Oh, and how about the frequency of your urination? Does sometimes feel that you're peeing every hour? Oh yeah, that also has happened to me. Okay, and how about when you empty your bladder? If you empty your bladder, do you feel that you have emptied your bladder properly?

58:28Oh yes, and sometimes I have to push. Those are symptoms of endometriosis also. Also the dyscasia, the pain while trying to poop, it's also very important. And sometimes we don't ask the proper questions. If you tell a patient, have you ever feel like a thunder going through your anus? a lot of patients are going to tell you that lightning like

59:00and last but not least pain during sexual intercourse because sometimes they tell them or here in mexico is like husband will tell them that you're not good for me because i'm too big for you or you have something faulty because you have pain while having intercourse and you have to explain them and it's not the same pain when you are beginning the penetration in the middle of the penetration at deep penetrating. There are different causes and all of this information gets missed because sometimes we don't have the timing of the consult or we don't take the time by doing the proper questions. So I think the five D's are really important.

59:36I want to ask about ovulation pain too, Vicki, because there are women who are under the impression that if they don't have period pain, but every time they ovulate, they're having the worst pain, they're down for a day, that can't be endometriosis because it's only ovulation. Can you speak to that? It's very common to have pain surrounding ovulation in patients with endometriosis, and it's a hormonally responsive disease, and it's responding to the shift in hormones, increase in estrogen, decline in progesterone. And so it's really common to have pain in the second two weeks of your cycle in our endometriosis patients.

1:00:10So are you talking about the luteal phase or are you talking about the follicular phase? The luteal phase, well, after ovulation. So the two weeks before including your period. So like a lot of our patients are in pain like three weeks of, not everyone manifests differently. Some people, I even have patients sometimes that have pain after their period. There's some upregulation and downregulation of hormone receptors on individual lesions. So the pain can really fluctuate and be different, but you often see ovulatory pain in patients with endometriosis. So it's almost like a telltale sign. But can I just add to what Anna was just saying about this being a reproductive disease?

1:00:45Endometriosis causes visceral pain. Visceral pain is the type of pain that makes you feel like it's a surgical emergency. You look like you're having a surgical emergency when you have visceral pain. And like calling this a reproductive disease is just, it's just, I can't begin to express just how much it minimizes this disease. It is, it is a disease that it really debilitates your entire body because it, to experience that level of pain so often is hard on your body. The in, in combination with the inflammation that you have, I just, you know, I, I can't really fully articulate just how devastatingly minimizing that is to patients that have it.

1:01:30Yeah. I want to say endometriosis is underfunded. PMDD, which is a severe, severe form that makes you want to unalive yourself of PMS, severely underfunded, especially when we start to compare it to things like postpartum depression. There has not been studies well enough looking at PMDD and the crossover with endometriosis. and why I bring this up is endometriosis is stilling two to three weeks out of every month in your life. PMDD, we know mental health issues are very, very prominent among those with endometriosis. PMDD is stilling 10 to 14 days out of every month of your life and more and more endometriosis patients are saying, I'm being diagnosed with this.

1:02:11We're talking about women losing half their life in their reproductive years. Six months out of every year is gone and they're being reduced over and over to, well, if you don't want to have a baby, why worry about it? There's always the pill. Shanti, was there something you wanted to add? Yes. Well, I love that you're bringing that up because not only is it affecting the woman and her well-being and her sense of her life, but it's also important economically. She's not as productive and not as creative and not as able to care for her children. Now you're speaking capitalism. Exactly. So capitalism at least can hear that.

1:02:48I wanted to make another point about ovulation pain. And so a couple of things, I think it can be both anatomic and also hormonal, hormonally mediated. So sometimes the ovaries are bound in scar tissue, and so ovulation feels like an increased pressure and increased pain with endometriosis. But also, we all acknowledge, and just to remind our listeners, that endometriosis is mediated very much by estrogen. And ovulation is that moment in the cycle where estrogen really peaks. So if you are watching me, it's a flat line, and it starts to increase, and then it skyrockets up and then comes down right after ovulation, that increase in estrogen stimulates endometriosis.

1:03:34And so that is a moment where you might have an increased or beginning the increased part of the painful cycle. Yeah. And to your point, as Cindy said, some of these women feel like they have the flu. We know that endometriosis loves to interact with mast cells, loves to get prostaglandins up, histamine up. When estrogen spikes, we can see more histamine rises with that as well. histamine then comes in and says, let's have more estrogen available. And so you can get into this cycle where you feel like your body's betraying you, but really it's doing exactly what it's designed to do. There's just dysfunctional tissue.

1:04:10You're not dysfunctional. This endometriosis tissue is acting in a way that is not in accordance of how you were designed and it's not anything you did and it's not your fault. I want to ask though, why is it do you think that endometriosis is not classified as a cancer? There's no atypical in the cells. I mean, cancer is a mutation in the cell. That means that the cell doesn't make like what it usually does. And the way that it grows and the way that it spreads doesn't commute with the endometriosis. Endometriosis are endometrial-like cells and they produce. I think the intestinal nodules, There's some data that when intestinal endo happens, it's like it grows really fast and then it gets to the size that it is and then it doesn't change much over time.

1:04:59David Redwine also did a study looking at this, and he found that there was not spread over the years. But the Matt Seedoff paper found that there was increased severity of disease and that the chronic inflammation and fibrosis worsens the adhesions. And maybe you might have a slightly larger nodule, but there's not a spread. You're not going to go from stage one to stage four with deep infiltrating bowel disease. You're going to stay at your stage more or less. Yeah, we're going to talk in an upcoming episode about endobrain, cardiovascular risk, because we're more than just endometriosis. This systemic inflammation is impacting our quality of life.

1:05:40What I am curious about, though, is that within the endometriosis community, there are women who are saying, we would love to see this classified as a cancer, because then we'd be taken seriously. Because medicine takes cancer seriously, they don't take women's pain seriously. But I'm just wondering if anyone else has anything to answer of like why endometriosis can't be cleanly put in the cancer category. You know, cancers originate from a single cell that has a mutation, either hereditary or somatic mutation, meaning like a spontaneous mutation in one of the genes that allows the cell to proliferate uncontrollably.

1:06:16But with endometriosis, the origin is pluricellular. cellular. Yeah. So it's not, they're different. They're not from the same origin. And so that's why I can't cleanly be diagnosed as a cancer, but that doesn't mean it shouldn't be prioritized. Exactly. It should be important in and of itself. Yeah. Why it's harder to do immunotherapy for endo, because with malignancies, you can create killer T cells that are designed to bind to a certain receptor on the malignant cells. and I think they've tried to do that. I don't know if we've completely tried that. I think there's still a possibility. Right, but I think they're having more trouble because of that, that it's not a single cell origin.

1:07:04Eczema is unpredictable, but you can flare less with EpGliss, a once-monthly treatment for moderate to severe eczema. After an initial four-month or longer dosing phase, about four in 10 people taking EpGliss achieved itch relief and clear or almost clear skin at 16 weeks and most of those people maintain skin that's still more clear at one year with monthly dosing.

1:07:50if you have new or worsening eye problems. You should not receive a live vaccine when treated with EBCLIS. Before starting EBCLIS, tell your doctor if you have a parasitic infection. Ask your doctor about EBCLIS and visit ebglis.lily.com or call 1-800-LILY-RX or 1-800-545-5979. But even if it was looked at like ulcerative colitis or Crohn's disease, like even if it was just elevated to that level, you know, it would get a lot. Their funding for Crohn's disease is like 15 times or more. Hold up. funding for erectile dysfunction and male pattern baldness compared to endometriosis. Like, you're losing your hair.

1:08:25I'm not pretty anymore. I literally can't walk and I'm vomiting and I can't take care of my kids. Like, how are these things, you know, not created equal, like in a man's mind of like, you know, cancer, ulcerative colitis, inflammatory bowel disease, endometriosis. And I say this in a man's mind, there's going to be someone that's going to be don't blame men. Men have had the reins for far too long and is why women's medicine is so far behind, especially in the U.S., as Shanti has brought up. We see other nations have prioritized women's health, not just for their ability to bear children, but for their ability to show up and have that quality of life, like actually viewing them as a human.

1:09:07And I think that's part of the issue in the United States is that we are a reproductive commodity. We are a means to the end by some of these people that control the purse strings. That is why it is so dangerous. I mean, that is literally, you just stated why it's so dangerous that this is thought of as a pelvic disease in women. Like this is a systemic disease that triggers further disease and it needs to be recognized as such. It's a disease of the body that is going to impact your entire body and it's going to trigger further disease. And I think the closest thing I can think of that is taken very seriously is like Crohn's disease and ulcerative colitis.

1:09:45It impacts your whole body, your ability to eat. You know, that is the joy of life for so many people. And I think endometriosis, it saps the joy out of life for so many of our patients. Patients that you see that have ovarian pain, especially during ovulation, and that it decreases during menstrual cycle. it's more common for me to find vascular compression syndromes, not endo. Ah, excellent. That's a good pearl for people. So it's like a way of a telltale of the questionnaire that I do and the questions that I present my patients in the office. If the pattern of the cyclical pain is worse during ovulation than menstrual cycle, it's often the cause of the pain, something vascular, than endo.

1:10:30Yeah. For in my cohort of patients. But that is a beautiful pearl to add. And especially for those of us who aren't always thinking about vascular compression and neuroanatomy as much as you are. Let me ask you, is endometriosis caused by retrograde menstruation? No. Why do doctors keep parroting it like it's the gospel? Because they don't want to train themselves even further or they don't want to see their reality or they just don't care about it. I mean, it's the easiest explanation. And I'm like, okay, a friend of mine had a patient with anoregiosis in the larynx. Explain that to me, please.

1:11:10It's impossible. I mean, it's a multi-organic disease that has a lot of causes. And it's not only like because you menstruate on the inside. Well, let me ask you, what is like some of the best evidence to refute that myth? Okay, well, it's a lot. Okay. Buckle up. No. First of all, I think you have to see the way that endometriosis is not the endometrium. And if you remove the uterus from a person, you're not going to remove the disease. If you have adenomyosis that it's only in the uterus and you remove the uterus, okay. But if you're looking for the source of endometriosis, you have to look for everything.

1:11:52because it is endometrial-like cells that are not the same as the endometrium. And the other thing is that the way that it spreads, it's not the same thing. And how would you explain endometriosis in the lung or in the eyes or in the nose that they have found or in the skin? So I think we have to really educate the patients in order for them to understand the disease, in order for them to know that their immune system is really important and the way that they eat and the way that they think it's even really important. Well, and endometriosis has also been documented in girls who have not reached menarche, so they haven't had their first period.

1:12:34So how do we explain that? And now endometriosis is being documented in men, and I'm just curious what the table thinks about endometriosis being discovered in men, will we actually get research funding now? It's not common enough, but I think Cindy had a really good comment about this yesterday. There's an Italian gentleman, he wrote two papers where he did autopsy studies on baby girl fetuses and found a 15 % incidence of endometriosis in the uterus sacral and the rectovaginal septum and things like that. There are at least two papers by a pathologist, one from the 70s, one from the 90s, on the concept of peritoneal metaplasia.

1:13:17And that the peritoneal cells, it's like a saran wrap lining that lines our abdominal cavity. It's very similar to the serosa or the outer layer of our organs, specifically the intestines and the uterus and things like that, and that these peritoneal cells have the ability to morph into tissue that resembles multiple different types of tissue from the Mullerian system or the female reproductive system. So endometriosis is the most common, endosalpingiosis is where the tissue looks like the lining of the fallopian tube, So endocervicosis is pretty rare, but I've seen it where basically there's a blob of this mucoid stuff that looks like cervical mucus, and there's actually glands of endocervical type glands in those masses.

1:14:17There's a thing called peritonealis, leiomyomatosis peritonealis disseminata. And the listeners are like, what? Right. It's basically where you get fibroids outside of the uterus. So you can have broad ligament fibroids, which are actually relatively common, but you can also have fibroids hanging off the mesentery of the colon. And so these tissues can turn into fibroids. And then there's primary peritoneal cancer where somebody doesn't have their ovaries. The ovaries have been removed many years before, and they get what looks like ovarian cancer. So all of those things speak to the fact that endometriosis is not retrograde menstruation.

1:15:07In addition, almost every lesion on the colon in the small bowel is on the anti-mesenteric surface. So the mesentery is where the fat in the blood vessels and the nerves come to the colon, and it's always on the backside. So if you think of the colon as a clock face and six o 'clock is where the mesenterity is coming in, 12 o 'clock is the anti-mesenteric surface. And almost every single lesion that I have ever seen on the colon is based primarily at that anti-mesenteric surface. At the 12 o 'clock. Yeah, the 12 o 'clock. Yeah. But I don't think that like, I don't think doctors believe in retrograde menstruation in like a nefarious way.

1:15:50Like I don't think of it that way, but I do think that it's very harmful. It's probably just what they learned from the beginning. It's like what I learned in med school. So I mean, if that's your only education about endometriosis and you have no new information, that's what you're going to say for the rest of your life. The worst thing about retrograde menstruation though, is that if you believe that somebody's going to form new endo every time they have their period, then the only way to fix endo is to take the uterus out or suppress their period altogether. Or take their ovaries out. Or take their tubes.

1:16:20Yeah. This is why so many doctors dismiss surgery as a therapeutic option for these patients. I just think it's harmful, but not in a nefarious way. It's in an uneducated way. What's really interesting is that the person who developed this theory of retrograde menstruation, a Dr. Sampson in the, I think the 19th century. So his theory, he actually had multiple theories and he talked about endosalpingiosis. He was an anatomist, a pathologist, and also really very interested in endometriosis, but he talked about the mullarianosis or embryogenic theories. So I actually think that a lot of endometriosis, that people are born with it, and that it is a failure of proper migration of the cells that ultimately form the uterine cavity.

1:17:09And what we do see often is the most common places where we find endometriosis are along those pathways of cell migration embryologically. And the left side of the diaphragm closes later than the right side. So we often see more right side, 90 % of diaphragmatic diseases on the right side. And so that closure of that embryologic anatomy happens a little differently on left and right, which is why we have more disease on the right, I believe. I think the biggest nail in the coffin of retrograde menstruation is if you look at the genetics, like Anna was saying, of native endometrium in the lining of the uterus, and then you look at endometriosis, there are similarities, but there are a lot of differences in the DNA and genetics of it.

1:18:08So the vast majority of endometriosis, excepting scar endo, is not an autotransplant. Right. Although utopic, meaning the cells inside the uterus, the endometrial cells inside the uterus of patients with endometriosis are also abnormal. And so... There's communication. There is some, whatever we want to call it, those cells are abnormal, contributing to infertility too. It's very complex. It's complicated. The acceptance of retrograde menstruation is in the way that basic science research is designed with this theory as the origin impacts the generalizability of those results. So I think there's just a lot of harm with the wide acceptance.

1:18:52And I really wish we could dispel this theory as the primary way that endometriosis occurs. I'm pointing to read papers and you read the first paragraph of the paper and it says, endometriosis is an enigmatic disease caused by retrograde menstruation. And then it goes on to talk about, it's like, it is not enigmatic. It is not caused by retrograde menstruation. Well, let me ask, because this was actually a question Ashley Laxton sent to me and she wanted to know what can be done through continued education for gynecologists to end the misinformation that they primarily spread about endometriosis.

1:19:33Retrograde menstruation, getting pregnant cures it, removing the uterus cures it. And so this is a big question in the endometriosis community of like, how do we stop the doctors who are supposed to be the first line you go to from being the perpetuators of this misinformation? I honestly think that social media and the endo advocates have played a huge role in the last 10 years in educating doctors. Totally true. It's forcing the subject. It is. We have no control over what is taught in medical schools. ACOG has some control and CREOG, which is the Council on Resident Education and OBGYN, has control over what is taught in residencies.

1:20:20And until the critical mass of a loud enough voice gets in their head and says, this is not true, here's what the data shows, and show you paper after paper after paper after paper that supports peritoneal metaplasia. And then at puberty, when the ovaries start making estrogen, then that acts like water and fertilizer for these seeds of endometriosis that then start growing. However you want to describe it, we don't know exactly the mechanism, but we know it's not primarily retrograde menstruation. We know that pregnancy is a high progesterone state that can suppress the biologic activity of endo, just like birth control, just like progestins.

1:21:09But it's not a cure and it's not going to stop the growth. It will slow it, but it's not going to stop it. How do we get that into what comes down from on high? I think the advocates, people with endo and people who have somebody in their life with endo, who they care about it, they get loud enough and they get to a point where ACOG has to listen to them, CRIOG has to listen to them. Well, to your point, it took tens of millions of women on Instagram, on TikTok, talking about how painful IUDs were before ACOG finally in 2025 decided, let's actually study and look at, is Tylenol enough? Because no other country says it's enough, but it's just a woman.

1:22:01She can deal with her pain, right? Let's talk about doing paracervical blocks before we do endometrial biopsies. Yes. And yeah, well, we're going to get on to this all in the, in the pain episode, but you know, it's, I think really disheartening for the patients to hear that, like you have to keep fighting because you're so fatigued. You already have anxiety. You're already in so much pain. Like you're all of this. And yet you have to keep fighting. And it's, you know, it really came out of me having six miscarriages and losing my baby last year where I was like, if I'm going to feel this pain, I'm going to channel it into no other woman having to feel this pain because this is so unacceptable that even as a doctor with everything I know and advocating for myself, still I was being dismissed in all of these ways.

1:22:47And I think that for those of us who have found relief from pain, who have entered another stage in the journey, I would say like when you're on the road ahead and you can see the potholes behind you, it is a beautiful thing when you can tell women who, you know, who are 15 listening to this, like what is coming on the road ahead and what you can look out for. I do want to ask, is there any legitimate testing on the horizon? There's all these talks about like, maybe we can use menstrual blood to diagnose endometriosis. Maybe, maybe we could use saliva. Maybe there's certain markers we can look for.

1:23:20Is there anything we can look forward to that's actually being iterated on in the research? I can answer that. So I myself am involved in a study looking at cells in the bloodstream that can identify endometriosis. And we have tests for cancer that can be done with blood work. And so that's, you know, we're still in the preliminary phases. But for many years, there has been an endometrial biopsy test called MyReceptiva that looks at an inflammatory marker BCL6. And this test is a little invasive. It's an endometrial biopsy. So it's kind of like having an intrauterine device placed for our listeners.

1:24:08However, it's a little quicker than that, an IUD. And then once it's over, it's over and you're not left with some cramping once the IUD is placed. So it's a little easier than that. But that test is over 90 % sensitive to picking, to suggesting the possibility of endometriosis. For many years, this test was only available to reproductive endocrinologists in in vitro fertilization clinics, where they would finally do the test if someone had unexplained infertility and was not responding to IVF to see if they needed surgery for endo. Now, this test is actually available to patients. They can purchase the test and then go to a doctor and ask for the endometrial biopsy.

1:24:50So they can get this test on their own, but it's just not widely publicized. But I think the downside to that test is that it can't distinguish with that inflammatory marker elevation between adenomyosis and endometriosis. So you can see that elevation. Yeah, an ultrasound can really give you a visualization of adeno. But it still is something that if it's positive, it has a really strong positive predictive value. We've mentioned adenomyosis multiple times in this episode. Vicky, can you define it for the listeners? So it's like the forgotten cousin of endometriosis. It's endometrial-like glands and stroma located within the muscle of the uterus.

1:25:30Talking about diagnosing endometriosis is difficult, but adenomyosis is even, I feel like, less often diagnosed. and it can have significant sequelae in terms of inflammation, pain, and also heavy menstrual bleeding. So for patients with heavy menstrual bleeding and pain with their periods, should suspect adenomyosis. Well, this has been a fantastic conversation for everybody listening. In our next episode, we're going deep on pain, women's pain especially, and why medicine is failing us. We're going to talk about treatment options, how to get diagnosed even further with other conditions it could be outside of endo and we're going to talk treatment options outside of surgery so i look forward to seeing you then your call has been forwarded to voicemail hi this is zoe deutch and nick robinson our brand new movie voicemails for isabelle is all about those little moments that feel like the universe is looking out feeling homesick then your sister calls hearing that perfect song exactly when you need it Please stay.

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