Endometriosis Surgeon Explains What Everyone Gets Wrong - Dr Lora Liu

0:00Dr Karan: Dr. Lora Liu, you're a specialist endometriosis surgeon and I often feel patients with chronic conditions are experts of their own body and experts of that condition. So what do you feel is something that endometriosis patients know, but doctors are only just beginning to appreciate? I agree 100 % with you. So endometriosis, I tell my patients all the time, look, I've been talking to you for 5-10 minutes. You've been living in your body every single day, 24-7 for the past 20, 30, 40 years. You know your body better than anyone else. So I think, first of all, patients have been, especially patients with endometriosis, have been, I hate to use the word gaslit because we use that all the time, but they really have.

0:45I mean, they've been to 7, 8, 9, 10, 11, 12 different doctors by the time they come see or before anyone even mentions endometriosis. it's crazy to me because they're always told it's fine, everything's normal, your imaging is normal, your blood test is normal, take some Advil. And patients know deep down inside that they're not fine, but they're just told to shut up and just go with it. So patients, they know what's going on. If doctors just shut up and listen just for five minutes, 10 minutes, and just listen to the story unfold, the patients will tell you their story. They'll connect the dots for you.

1:29And all you have to do is just be like, has anyone ever thought of this? Has anyone told you we might have this? And I think it's just really important for doctors to listen to patients.

1:41Dr Karan: Yeah. Endometriosis is clearly not a rare condition. It's believed to affect 190 million women worldwide. Perhaps that number is sandbagged to some degree, and maybe it's even more. But I believe one of the issues with endometriosis, and maybe this is one of the limiting factors to getting it diagnosed, and also finding better therapeutics to actually help to alleviate some of the symptoms, is finding out what the cause is, or causes plural. You know, there's often this myth that goes around, which might have a molecule of truth in it, that many people believe it's because of retrograde menstruation, where the menstrual blood refluxes back into the uterus and there's this backward flow and that can cause the propagation of endometriosis.

2:28Dr Karan: But 90 % of women may experience retrograde menstruation, but one in 10 women have endometriosis. So there's a discrepancy between how many women experience retrograde menstruation and how many women are thought to suffer from endometriosis. So maybe that's a component driving it to some degree, but what really are the causes that we know of so far for endometriosis? Oh my gosh, that's a great question. Short answer, we really don't know. I think retrograde menstruation, I mean, that was first described back in the 1920s. And it makes sense if we actually think that when you menstruate, some of the endometrial tissue comes out.

3:07That's your period. Some of the menstrual tissue goes back through the fallopian tubes. That's called retrograde menstruation. And that tissue will implant inside the peritoneum. And they're like, okay, well, if endometriosis is just ectopic endometrium, that's the pathogenesis. And that's how it starts. I think there is, like you said, a molecule of truth to that. I do think that retrograde menstruation may play a role in how endometriosis develops, but it's not the whole picture. So I actually think that when it comes to endometriosis, there's so many different factors, but immune dysfunction, for instance.

3:51So maybe the patients who have endometriosis do have retrograde menstruation, and their immune system fails to clear the cells and then allows implantation survival growth. There's all this other dysfunction that allows that endometriosis to start growing in some patients. But like you said, about maybe 90 % of women actually have retrograde menstruation. 90 % of women do not have endometriosis. And so maybe there's an immune component or dysfunction in the patients who do have endometriosis that allows the retrograde menstruation to actually help propagate endometriosis. But that doesn't explain the whole picture because we know that patients who have been born without a uterus also have been found to have endometriosis.

4:36So that theory doesn't fly in patients who don't have a uterus. So we actually think that maybe it's peritoneal transformation. So we know that endometriosis most of the time is found in the peritoneum or it starts in the peritoneum. And for whatever reason, those cells are probably just already there from the time that you're born. We know that fetuses have been found to have endometriosis. Again, they've never had a period. And so we know that you're probably more or less born with it. And when you undergo hormonal triggers, such as you start your first period, then that kind of starts letting those lesions grow, letting those lesions start getting stimulated.

5:25And so that's why most patients start feeling symptoms at the time of their first period. Although I've had patients who've told me that they had symptoms even before their first period, but then things actually got worse with the onset of the first period. So there's a lot of different factors that play into it. I think environmental factors can also play into it. We also maybe think that there's maybe some kind of hematogenous spread or lymphatic spread of these lesions because how else does it go up all the way to the diaphragm? We really don't know a lot. And it's upsetting because if we don't understand how the disease starts in the first place, it's very difficult to treat it.

6:08I mean, we know that surgery is a way to treat endometriosis because you have to like just cut it out. It's like a splinter. You have to just remove the abnormal tissue in order to really treat it. But then we also know there's recurrence. And why can't we just prevent it from starting in the first place? Hereditary factors also play into a patients who have a family member within a first degree family member with endometriosis is also seven times increased likely to have it as well. So there are so many different factors that play into how does endometriosis start or what causes it? And the short answer is we really don't know.

6:41There's several theories that I think can all play into it, but short answer, we don't know.

6:45Dr Karan: The complexities of endometriosis are really epitomized by a lot of the things that you just mentioned there. You mentioned inflammatory component, the immune system being dysregulated, hematogenous spread, so spreading through the blood to other body parts, you know, genetic risk factors, you're born with it, maybe environmental triggers. I see a lot of people online sometimes comparing endometriosis with a cancer in terms of its etiology, in terms of how cancers spread, how aggressive they can be, how progressive they can be, how even despite surgery it can still come back with recurrence, metastasis, how it spreads through the body via different routes, lymphatic, blood.

7:24Dr Karan: I guess there are pros and cons for trying to draw similarities between something like endometriosis with something like cancer. But, you know, there are some similarities that I think are valid in terms of like, you know, the number of subtypes of endometriosis that we're beginning to understand that there are, you know, the sort of diagnostics are not always perfect. You know, you don't have blood tests always to detect cancer. Sometimes, you know, imaging studies may not detect cancer similar to endometriosis. Maybe one of the most similar things maybe we can apply that cancer model to endometriosis maybe in how it's generated right like people when you think about cancer you talk about the traditional two hit hypothesis you may have like a genetic predisposition or a risk for cancer and then in life you get a second hit from an environmental trigger which makes it worse or increases the risk further so cancer actually manifests.

8:22Dr Karan: Is that somewhat accurate with endometriosis where you have these genetic risk factors and then your first period or something other environmental or microbiome or hormonal is that second hit to then allow it to manifest? You hit it spot on. I actually think that that is probably the most possible theory. I mean, there's all these other factors like we mentioned, but I think you just have a genetic predisposition to it. And then there's something that just triggers it. And what triggers it, we're not 100 % sure. Because if we can find out what triggers it, or better yet, if we can find the gene that predisposes people to endometriosis, then we can, I mean, just like with cancer, then we can just screen for it, stop it.

9:05And that's it.

9:06Dr Karan: Yeah. You know, also like with endometriosis, again, not just endometriosis, but many chronic conditions, there's often a conflation between common symptoms and normal symptoms. And then we get into this slippery slope of normalizing symptoms, which are common and debilitating for a condition. And then almost like, you know, to use your word before gaslighting people to make them feel that it's normal. And I always feel that normal does not mean common and common does not mean normal. You have these common symptoms, which are linked to endometriosis, and then symptoms which are normal for a woman as part of a menstrual cycle or as part of her symptomatology, what are normal or common symptoms specifically for someone with endometriosis?

9:51Dr Karan: If that word normal can even be applied because the symptoms can be so diverse, right? Correct. And I always say endometriosis doesn't follow the rulebook, doesn't follow the textbook. The symptoms that endometriosis, that patients with endometriosis have just varies so widely. But to your point, I think there are some common symptoms, but not every patient, a lot of patients are like, oh, I don't have X, Y, and Z. Therefore, my doctor told me I can't have an endometriosis. But some of the common ones or most typical symptoms are painful periods. A lot of times, symptoms, bowel or bladder symptoms that get worse around your cycle, a lot of times they get worse around ovulation or during your menstrual or when you're bleeding.

10:36during your period. Painful sex can be a big one as well, especially with deep contact. Deep dyspareunia is what we commonly see. A lot of patients have told me, oh, I don't have pain with sex. So my doctor told me there's no way I can have endometriosis. And this patient has stage four endometriosis. There's other patients who have no symptoms whatsoever. They're completely asymptomatic. They just cannot get pregnant and they have no idea why. They've never had painful periods. They poop like a Swiss clock every single day, no constipation, no diarrhea, no endobelly. Their bladder is fine, no pain with sex, and they can't get pregnant.

11:18And they have what's called unexplained infertility or maybe not even unexplained. Sometimes the REI or the fertility specialists will get imaging and they have these huge, you know, either endometriomas in the ovaries or they have stage four endometriosis on MRI. And I'm like, how are you not symptomatic? And they're like, I promise I'm not symptomatic. I feel great. But infertility is certainly a symptom. But it's not one of those symptoms that bring you to the doctor every single month or, you know, it's not one of those symptoms that I think are highly screened for when it comes to endometriosis.

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13:15Dr Karan: So what actually happens in terms of if someone is living with endometriosis from the day they're diagnosed and every year onwards, does the condition get worse in terms of their symptomatology? Does the window for surgical intervention close down because the patient is getting older and maybe less fit for surgery? Or is there something in the actual condition which changes, which makes surgery more complex? Does it impact their life even more? Or actually, does it reach a certain point where it just becomes stable and then they live with it? I think that we've always thought that endometriosis is a progressive disease in terms of do the lesions actually spread and grow and metastasize like a cancer?

13:59And honestly, we don't know. But we do know that with endometriosis, it looks very different in patients. So for instance, in teenagers, their endometriosis, it's very difficult to see. They're not the typical gunpowder black lesions that you see on Google or that you see in older patients typically. Although we have had teenagers, 14, 15-year-olds, who have had these dark gunpowder black lesions. And I'm always curious as to what would happen if we didn't intervene when they were young. Would they keep on growing or would they start spreading or would now we have to be doing a bowel resection?

14:38most of the time though there are the clear white peritoneal lesions and again what would happen if we let it quote unquote grow for the next 10 20 30 years there was actually a study that was done that shows that endometriosis actually doesn't progress in terms of if you think like roots of a tree and spreading throughout the body every single year it's it's not like that however However, the lesions may stabilize, so the actual endometriosis lesion may stabilize, but the surrounding inflammation, the surrounding scar tissue can continue to grow, thus making surgery a lot more difficult for the surgeons.

15:15A lot of times it's difficult for us or for me as a surgeon to tell the difference between where is the actual endometriosis lesion and where does that stop and where does the surrounding inflammation or fibrosis begin. because a lot of times they look the same, they behave the same, and the fibrosis and the inflammation that is caused by the endometriosis is what, in my opinion, causes the pain and the symptoms. Yes, the lesions do as well, but it's the angiogenesis or the new blood vessels or it's the invasion of the fibrosis into the surrounding nerves that causes the symptoms. So I think you do you have progression of disease?

16:01Probably to a certain extent, but I think the progression of symptoms continues onward. So again, early intervention to just stop the disease and its process, stop the surrounding inflammation and the new blood vessel growth and the nerve involvement from growing or spreading. I think that that's why I always say early intervention is key. If we can stop it and cut it out by the root early and prevent the surrounding tissue from growing.

16:31Dr Karan: Yeah. So it sounds like from what you're saying, the endometriosis may not change significantly after a certain point, but it remodels and becomes like concrete almost where it does become more tricky to intervene. And maybe then you're stuck with the condition where surgery might become more fraught with danger. Correct. You know, I guess for someone who's not seen a patient with endometriosis, like really severe symptomatic patients, or, you know, even someone in their own life who's got endometriosis may not understand the true impact it has on someone's life in terms of how physically and mentally incapacitating it can be.

17:11Dr Karan: I came across a video that you spoke about recently about the C.C. Wally case where a woman was fighting to basically say that endometriosis was a disability for her and she won that case. Explain why endometriosis is a disability. Yeah, endometriosis can really just wreak havoc on your entire life, your ability to function. I can't tell you how many patients tell me that they have to call out of work the first day of their period, or they have to work from home in bed with a heating pad. Some patients will tell me they're on the floor for the first two to three days of their period, just right next to the toilet, next to the shower, next to the bathtub.

17:53They are not able to leave their bathroom for maybe like the first one or two days. I mean, that is a disability. You are physically disabled from doing anything, working, functioning. You can't do anything because the symptoms are so severe. That's not everybody. A lot of patients are able to function at work. They're able to just take massive quantities of painkillers and go to work because they don't have a choice. They can't call out. Otherwise, they'll get fired. But you know that their level of work that they're doing is not, you know, it's going to be compromised. So absolutely. I mean, endometriosis absolutely is a disability.

18:34because you are physically incapable of functioning. And it's not that they're being traumatic. It's not that they're not tough enough. It's bad. It's real. It is real. But then people are like, oh, well, just, you know, it's just a bad period. Like just take some Advil and just suck it up and go to work. You know, plug in your heating pad if you need to. Some patients literally cannot do that.

18:59Dr Karan: The thing you mentioned about heating, obviously, heat provides some degree of analgesic effect and pain relieving effect for many patients. But often I've seen over the years when I've seen a young woman with abdominal pain come in for a surgical assessment, they've got this classic erythema ab igne rash, this heat rash, because they've likely put some sort of heating cushion or heating pillow on there for a long period of time. And it's actually caused, you know, these burn marks on them on, you know, either their abdomen, their back or their pelvis. How often do you see that? And like how pathognomonic is that of a sign where you can say, okay, this person's got endometriosis or something chronic in their pelvis?

19:42Yeah. It's one of the, if I see that on a patient, I don't think I've ever seen a patient who's had that lacy pattern, like you were describing that lacy pattern, burn marks. Some patients have actually had third degree burns because they're like, they just can't get enough heat. It's not hot enough. And they just, they'd rather burn their skin to numb the inside internal pain. I don't think I've ever seen a patient who's had that, who has not had endometriosis. So it's a very good sign.

20:10Dr Karan: I think coming back full circle to this idea of how do we diagnose people earlier and how do we intervene earlier and find better therapies? It comes back to the question we, topic we discussed a bit earlier in the conversation about what is the cause of endometriosis. And this year we saw the results of the largest genetic study of endometriosis, 1.4 million women with endometriosis had their DNA analyzed. It identified 80 genetic risk regions for endometriosis. 37 of them were completely brand new and previously unknown. So we know, I mean, you and other experts have known for years that the disease is biological, not just about painful periods.

20:50Dr Karan: But now because of this data, we're beginning to see that real scientific proof that there are immune genetic components, inflammatory genetic components, vascular risk factors, all of these interesting and important things, hormones that we've known about for a long time. But also we've seen overlaps with endometriosis and other chronic diseases like migraines, fatigue, fibromyalgia phenotypes, adenomyosis and endometriosis crossover. And you could argue that they're basically different versions of the same condition. I guess the upshot of that paper was to suggest that there are several distinct genetic and phenotypic traits for endometriosis.

21:36Dr Karan: It's a wide, diverse range of conditions rather than just saying endometriosis is one thing. Almost similar, I don't want to keep harping on about it, but similar to cancer, where we use the word cancer as an umbrella term for hundreds of different conditions, right? From lymphomas to bowel cancer. I guess endometriosis is somewhat similar where actually there's unique fingerprints of endometriosis. How important was that study to kind of progress that conversation and how useful is it to kind of tell us more of what we actually need to know? Yeah. Again, I think that study proves that endometriosis is a very complex disease and that there's specific genetic loci, like you mentioned, that belongs just to endometriosis.

22:22We also know, just like you mentioned, there's such a huge overlap. And so endometriosis, again, I actually wish it would be classified as a cancer because I think it would be, if it was classified as cancer, I mean, research would just explode and it would be taken more seriously. It wouldn't be just labeled as just a bad period. We also know that endometriosis, there's a huge overlap in autoimmune conditions as well. So for instance, celiac disease, rheumatoid arthritis, there is an increased risk in patients with endometriosis who also have autoimmune disease, which brings us back to maybe some sort of immune dysfunction.

23:00And then with the fibromyalgia, we know that there's also increased risk, increase a correlation with that in endometriosis. And so now it's more of like maybe even a neuroimmunologic issue as well. The study that just came out, I think it was like a few months ago, is really just going to be the catalyst for hopefully more research, more targeted therapies, more not just take birth control pills and Advil, that's your solution, let's remove the uterus and you guys are going to be cured. It's actually just a much more diverse and complex disease than what we had originally thought.

23:33Dr Karan: And also recently, given that we know that there's this immune inflammatory component to endometriosis, I've seen a lot of people online with endometriosis and even some physicians discuss this anecdotal data that they're seeing in their patient population and patients themselves reporting improvements in endosymptoms whilst being on a GLP-1. And I wonder if you've seen that similar overlap as well. And why do you think that is? Do you think that's because of the anti-inflammatory effects of GLP-1s independent of weight loss? And do you also feel that for patients with endometriosis who also have higher adiposity, some degree of weight loss may then improve the body composition and then improve endosymptoms to some degree?

24:20Dr Karan: Like what do you think is going on there to cause this kind of symptomatology improvement with GLP-1s? Honestly, at every single patient that I've seen who's been on a, And it's like a low dose, like a micro dose, GLP-1. They've overwhelmingly reported improvement in symptoms. Sometimes they start on it because they have to wait for surgery. They can't get surgery scheduled right away due to whatever reason. And they're just out of desperation. They start on a just very low dose GLP-1. And they're like, oh my gosh, Dr. Liu, my bladder symptoms are fine. I'm sleeping through the night. I'm not having to get up like two or three times in the middle of the night to pee.

24:56The endo belly is down. My pain overall is down. I just feel like a different person. And I think for patients who are on it for weight loss, I do think, or who do have a little extra adiposity to lose, I do think that decreasing that can also help. But also I think it's more going to be, it decreases inflammation in the body in general. And so we have seen a lot of success with that.

25:22Dr Karan: Another thing which may tie into the inflammation, also the immune system, which kind of underpins those as well as hormones is the microbiome. I feel endometriosis and the microbiome is a bit of a black box. And for example, if you search endometriosis and microbiome on PubMed, you know, repository of, you know, if anyone doesn't know what PubMed is, a repository of millions of, you know, scientific journals, if you type in endometriosis and microbiome as a search term and then filter by clinical trials, I think you get about three clinical trials. and I think one of them may be relevant, but they're slightly underpowered.

25:59Dr Karan: And yeah, even otherwise, just three clinical trials is kind of mind-blowing that there isn't more data on there. How important do you think that overlap is between the microbiome and endometriosis? And have you seen any benefit in your patient population or any of the research out there, which suggests that if you improve the state of the microbiome, you could help to alleviate certainly GI symptoms of endometriosis and maybe the disease overall? I haven't seen a lot of research on it. I think intuitively and like it makes sense, right? Because we know that patients who have endometriosis, 80 to 90 % of them all have bowel symptoms and not 80 to 90 % of them have actual bowel endometriosis on the actual bowel, like physical lesions on the bowel.

26:49But all of them, not all of them, but the majority of endometriosis patients do report bowel symptoms. And some of that, some of the patients report that as their most distressing symptom. It's not even painful periods. It's not anything else. It's the bowel symptoms, the endobelly, the bloating, the constipation. And it's not just with their cycles. It's all the time. So I definitely do think that the microbiome does play a role in endometriosis and correcting that could potentially help with symptoms a lot. I just haven't seen a lot of studies on it. We do know that patients with endometriosis have more permeability in the gut, which may contribute to symptoms.

27:33But I also think, you know, fixing the microbiome could also, I just think there's so much out there that we just don't know a lot about. and intuitively speaking and like from a logical sense, yes, all this makes sense, but now we have to prove it. It can't just be like, oh yeah, this makes sense. I think this is what it is. But now we have to really prove it. And I think that, like you said, there's such a paucity in data when it comes to the microbiome because I don't think, you know, it's not sexy, no one wants to, no one cares about that. But I do think that that could really help with gut symptoms.

28:07And again, 80 to 90 % of endometriosis patients or patients with endometriosis have bowel symptoms and many of them list as their most distressing symptom.

28:17Dr Karan: Yeah, it kind of boggles the mind that given that the microbiome is such a dynamic interface and is so readily influenced by lifestyle factors and things we do to it in our diet and how quickly we can change the microbiome as well and see changes. If someone eats more fiber or eats more fermented food or does something like that or takes antibiotics, you see the good and bad of that pretty immediately in the microbiome. So given how quickly you can actually influence it and change it, it's kind of strange that we've not seen simple dietary interventions and therapeutics for that because they're relatively easy to study and they're kind of quick to do as well.

29:00Dr Karan: So as like an easy lever, that doesn't require systemic therapy because the truth is that while systemic therapy and hormonal therapy and all these other things may be highly beneficial for a lot of people, some patients and some cohorts may just require something smaller, right, to alleviate the symptoms. So it's kind of odd that I, you know, we haven't seen more of that, but, you know, hopefully there will be over time. You've obviously operated on hundreds of women with endometriosis, thousands of women with endometriosis. What is the biggest misconception that people have about what this disease actually looks like inside the body?

29:35Well, when you Google endometriosis or you learn about it in medical school, you see these big black gunpowder, they're called gunpowder because they're black, lesions. And that's a classic typical picture of endometriosis. A lot of patients don't have that. Like I mentioned, especially in younger patients, teenagers, early 20s, it is very difficult sometimes for me to even tell the patient after surgery, immediately when they wake up, whether or not they have endometriosis. I used to think that I was very good at seeing the lesions, and I think I am. But there was actually, there was a study that was done at Mayo Clinic.

30:16It's not been published, but preliminary data showed that 12 % of lesions are completely missed even with an expert looking at it. And that's because especially in like I keep on going back to the teenagers, but it is so hard to tell sometimes. I've told patients before, hey, look, I don't think you have endometriosis. Everything looked fine, but I still will remove specimens. I do what's called a complete peritonectomy, which means I completely strip the peritoneum. The peritoneum is the inner lining of the pelvis. It kind of covers the pelvic sidewalk and cover visceral organs, if you completely remove that, I know that I've not missed anything.

30:54And so I started doing that way back when I first started operating. And I would tell patients, yeah, I don't think you have endometriosis. Everything looks good. But then the pathology would come back with endometriosis. And so I learned my lesson to just not say anything until the pathology report came back because my eyes are not very good. And that's why endometriosis, it has to be diagnosed underneath the microscope. And so a lot of patients will have what's called a diagnostic laparoscopy where their OBGYN will say, yeah, let's go, let's take a look. Let's go in and look for endometriosis.

31:29They pop a camera inside the abdomen. They take a look around and they say, no, everything looks good, but they don't remove any pathology. I've operated on so many patients who've had negative diagnostic laparoscopies and they come to me because they're still very symptomatic. They're like, I really think I have endo. Most of the time they're right, Even though when I look in, I'm like, oh, I don't know, maybe this is endo, maybe it's not. And we take out the specimens and, you know, maybe not everything comes back endo, but they do have endometriosis.

31:58Dr Karan: So, yeah, I mean, the obviously gold standard guidelines seems to suggest that to formally diagnose it, you should undergo a diagnostic laparoscopy. you're saying that patients who sometimes undergo a diagnostic laparoscopy may have a negative laparoscopy where there's nothing macroscopically found. They can't actually see any of these lesions or anything like that. And then they may come to you. And what would you do then? Would you do like a peritoneal biopsy or something and then examine the peritoneum, the inner lining of the abdomen under a microscope to see if there's any endometriosis microscopically in that peritoneum or is it specific commonly affected organs that you'd biopsy?

32:37If I don't really see anything with my own eyes, which is not very often, I will still do a complete peritonectomy, which means I remove all the inner lining of the inner pelvis and over the bladder, over the bowel, posterior, behind the vagina, behind the uterus, from over the rectum, pelvic sidewalls, under the ovaries, and send all of that tissue to the pathologist where they look at it under a microscope and then they'll say yes or no whether it has endometriosis. So even if I don't see anything that looks very convincing, and most of the time I feel like I'm pretty good at seeing lesions, even subtle lesions, clear lesions.

33:23I feel like I'm a pretty good detector of endometriosis, but I'm not perfect and my eyes are not perfect. And I have, had I not done a complete peritonectomy, I would have missed lesions. And so that's, that's how I know that, you know, the endometriosis, it's a microscopic disease. I think for the most part, if you're trained in it, you can detect it. But like I said, 12 % of the time, you're going to miss things if you don't completely clear everything out.

33:51Dr Karan: This makes it even more challenging than I suspected because, you know, a lot of patients, the first hurdle they face is getting someone to agree to do a diagnostic laparoscopy in the first place. Assuming someone believes they've got endometriosis or suspects it, that's like the first hurdle, then they may have it. And the person doing it may not be a specialist, right? You should be an endometriosis specialist, ideally to do the diagnostic laparoscopy. So you're not just unnecessarily causing some invasive insult to a patient and then it's like not as useful as it can be. Secondly, if they then don't find anything, a complete peritonectomy is quite a major undertaking, right?

34:32Dr Karan: That's like a very major surgery. So what is the kind of trigger for you to do a complete peritonectomy on patients who've had a negative laparoscopy, but still have symptoms? Is it just the presence of these endometriosis type symptoms and a negative negative laparoscopy and negative imaging? And is that like the final, okay, we really don't want to go down this route because it's such a major thing, but you fit all these criteria. What are those criteria to get then to a complete peritonectomy? When it comes to surgery for endometriosis, there's a couple of things that guide me in deciding whether or not someone should go to the OR or not.

35:10First of all, it's a conversation with the patient. The patient's always the boss. The patient knows her body better than anyone else. And yes, past imaging, past surgical history, past therapy, such as hormonal suppression, or even like physical therapy, acupuncture, all these other things. It's not just an algorithm where it's like, did this happen? If yes, then you go here. Then it's not as simple as that. It's really a conversation with the patient. However, if a patient has had a negative laparoscopy, I always want to know who did it. Was it OBGYN? It was just a regular OBGYN who was up at 4am delivering a baby and then comes in and does your surgery and you're the only surgery that this OBGYN has done in like three or four months.

35:55If so, then, you know, I'm like, okay, so they stuck a camera and no biopsies were taken, no pictures were taken, and you failed, you know, three different hormonal therapies and you're still having very convincing symptoms. You know, at that point, it's a conversation, right? We talk about the risk versus benefits. We talk about, hey, this could not, maybe we'll do a surgery and it's not endometriosis. How do you feel about that? Because there can be times where we do a complete peritonectomy, there's no endometriosis. Not everybody has endometriosis. But most of the time, patients are so, I don't want to say desperate, but most of the time patients are just like, you know what?

36:36I want to know. If I don't have endometriosis, great. Awesome. Yay. I don't want endometriosis, but I just want to know. And so, again, it's a conversation that we have with the patient.

36:47Dr Karan: Yeah, I think even though it's obviously like an aggressive approach, I think there is that silver lining there where it's the ability still to provide patient closure and at least an answer for them to explain their chronic lifelong symptoms. Because there's likely a significant proportion of patients who maybe haven't heard that endometriosis is a microscopic condition. that maybe they've had these symptoms they finally have surgery diagnostic laparoscopy and they feel yes i'm going to get the answers and then to their shock they're told by the doctor that it's a negative laparoscopy and then they think sure it's not endometriosis because i've had the gold standard investigation i've had a camera inside my abdomen they couldn't find it so it's not endometriosis and they are then inadvertently by both you know by the medical team misdiagnosed or underdiagnosed and they go off seeking treatment for something else.

37:42Dr Karan: Okay. It's not endo. It's probably IBS. It's probably something else. And actually you're still providing that window of opportunity, even though it's aggressive to know it's, it still could be endo. So I think that is like, I think fantastic. And something else, I guess a lot of patients who may have had endometriosis surgery to debulk the endometriosis, remove some endometrioid lesions, they have the surgery, and then you hear reports of then needing future surgery down the line for endometriosis recurrence. Now, do you think it's legit that someone can get a recurrence of endometriosis, or is it more likely because the initial lesions were missed in the first place, that's why they've got this recurrence?

38:23Short answer, you can absolutely have a recurrence of endometriosis. I think the majority of patients who are taken to the OR every one to two years for a quote-unquote clean out by their regular OBGYN or by whoever did their surgery, and they're told, hey, it just keeps on growing back, it's growing back, I think in those patients it's probably not true recurrence of disease. I think it's most likely residual disease or disease that was missed the first time around. So a lot of patients, let's say they have a chocolate cyst or an ovarian endometrioma, they'll either have surgery to get the cyst removed, and then that's it.

39:03and they'll say, okay, you're good. The chocolate cyst or the ovarian endometrioma was removed. We did a cystectomy. We didn't drain the cyst. We actually removed the ovarian cyst and you're good. But they continue to have symptoms. And it's because there's all this other disease surrounding and on the bowel, anytime you have an ovarian endometrioma, there's always 100 % going to be other disease elsewhere in the pelvis. It's never just limited to the ovary. So yeah, I had surgery for my endometriosis. I had a cyst taken out. It was a chocolate cyst and I was good, but I'm still having symptoms.

39:38And I always, always ask for pathology reports in anyone who's had previous endometriosis surgery. And if they haven't had tissue removed from other places in the pelvis, I know that there's residual disease that's left behind. And so I think a lot of patients will feel better after, let's say, getting that cyst removed, maybe for like six months to a year, because, hey, that big cyst in their ovary is no longer there. I feel amazing. But then they're like, oh, but I still have pain on this side, or I still have bowel symptoms, or I still have the same symptoms. And then they go to their doctor.

40:14Hey, I felt great for six months to a year after the surgery, but now I'm starting to feel more pain again or whatever. And then the doctor's like, oh, well, you probably have a recurrence. So let's go back to the OR. And there they take out, you know, two or three more little biopsies. That's easy to get. And then they're like, okay, you're good. We got endometriosis out. Here's the pathology report. It came back as endometriosis. You're good. And the patient's like, great. You know, another six months or a year goes by and symptoms start coming back again, obviously, because the disease is still left behind.

40:47And okay, well, it must be another recurrence. And I always tell patients, look, endometriosis, you shouldn't be seeing your endometriosis doctor like you're seeing a dentist. You don't go in every six months to a year for a clean out. That's not how it works. Really, you should have one good surgery ideally, and hopefully that's the last surgery you will ever need. That doesn't always happen. Recurrence can happen. In the hands of an experienced endometriosis surgeon, the recurrence rates are about 20 to 30 percent. Again, it depends on the different, it depends on the type of endometriosis, like stage four.

41:25If you have stage four endometriosis, you have a higher chance, most likely, than a 20 to 30 percent chance of recurrence. If you have adenomyosis, you're also going to have a higher chance of recurrence. So there's a lot of different factors that go into it. So recurrence can absolutely happen, but I do believe, and this is going to be a very unpopular opinion, but I honestly believe that patients with endometriosis truly can have one good surgery and be good for the rest of life.

41:53Dr Karan: This is something I am ridiculously excited about, and I've been using it for a while now myself. We've all got wearables for our sleep, steps, heart rate, but the one thing we don't track, the thing that actually tells you more about your health than almost anything else is your bathroom data. And that's why I joined the team at Throne Science. Throne is the world's first hands-free smart toilet platform that turns your everyday bathroom habits into real actionable health insights. It uses computer vision and sensors to analyze tool shape, color, consistency, frequency, even patterns like straining and time spent sitting on the toilet.

42:26Dr Karan: And I've been helping to build out the science as well. No forbidden photos on your phone, no awkward Excel spreadsheets. You just do what you normally do. And Throne gives you trends that actually matter for your gut health, hydration, fiber intake, and even early warning signs you'd normally miss. If you want to be one of the early people to try this or just follow the journey, head to thronescience.com. That's thronescience.com. Trust me, it'll be your gut's new best friend. Given that surgery is almost a prerequisite to diagnosing endometriosis, we often hear about some of these non-invasive methods to detect it, you know, novel biomarkers looking at the menstrual blood.

43:04Dr Karan: I believe there was some early preliminary studies on salivary tests. you know, some blood biomarkers that could be used. You hear about them and then everyone gets excited and then they disappear and then they're not in clinical practice. What is happening with the state of these novel diagnostic tools that we have? And are we any closer to having any of those as part of, you know, the routine clinical guidelines to diagnosing it? Because, you know, if we get that, we can bypass surgery, which would be great. Yeah, I do think that we are further along than we were before with some of these tests.

43:42I think it's going to be a very, very long time until it's in your OBGYN's office where they're like, hey, you meet the criteria, you have symptoms suspicious for endometriosis. Before we go to the OR, why don't you just spit in this cup and we'll see, yes or no? Or why don't you just collect your menstrual blood for a couple of months and yes or no, thumbs up or thumbs down? So I think we are closer, but I still think we're very, very far away from that actually happening. I still think that listening to the patient, listening to their symptoms, listening to the timing, listening, the timing of their symptoms, listening, just listening, I actually think that that is the best screening tool, to be honest.

44:25I think, yes, you want objective data. You want to see a big something on the ultrasound or you want something to be like, yes, 100%, let's go to the OR. And I think that these tests would provide that. I just don't think we're there yet. I think it's going to be a very long time. So in the meantime, we're just going to have to listen and go off of symptoms. And then again, it's a conversation between the patient and the physician. I will never, ever say you have to have surgery. It's always a, hey, this is an option. We have a surgical option and we have a conservative management route. You know, with surgery, you will definitely get a diagnosis and you'll get treatment at the same time.

45:09But if that's not for you or if it sounds too aggressive or it's just not, if you don't want that, then let's try X, Y, and Z on this other side. So again, I think the patient really should be the one who drives the decision making. and I am here to help them any way that I can and provide different options. But it would be great to have someone just spin in a cup and be like, let's go to the OR now, let's go.

45:35Dr Karan: Yeah, absolutely. And I guess on the conservative non-surgical methods, a lot of endometriosis patients, their management relies in part on the use of hormone suppression. How problematic can this be for patients? And is there a risk of just maybe masking symptoms and providing like a band-aid for symptoms and not actually, you know, targeting a longer term? And, you know, is there any hope that we can move beyond hormone suppression? Yeah, I think there's a lot of hope that we can move beyond hormonal suppression. But right now that seems to be, you know, first line management for endometriosis.

46:12But it can be very problematic. A lot of patients do not tolerate hormonal suppression, either from mood changes or body changes, weight gain, breast tenderness. Sometimes it makes their endo belly worse. Sometimes, you know, for whatever reason, there's so many different side effects that can happen or that patients can experience with hormonal suppression. And if they're trying to get pregnant, they can't. They can't do hormonal suppression, obviously. So it is very problematic. For some patients, they're like, I love my birth control pills. I was diagnosed with endometriosis X years ago. I've been on the pill since.

46:50I feel great. I'm like, awesome. Good for you. Have a wonderful life. Hormonal suppression does have its role. And if it works for the patient, awesome. Can it mask symptoms? Yes, it can. But at the end of the day, if they're doing great and living their best life on birth control pills or the IUD or whatever, and they're like, I feel my life is good, then I'm like, all right, come back when it's not. I don't think there's any harm in having someone who has endometriosis on hormonal suppression if they're doing okay. It's a different story if they're having terrible side effects or if they're not doing okay.

47:30Or what may happen is the first few years on birth control pills or hormonal suppression, they're feeling good, their symptoms are managed. But then they notice that things start to creep back in around maybe, and I'm just saying this, like maybe year five, maybe year six. And they're like, it used to work so well, but now it's not. Now I'm having X, Y, and Z, my legs starting to hurt. I'm having sharp shooting pain of my butt. Now I'm starting to feel symptoms again. And so what worked before isn't necessarily working again. And again, it's because we know that hormonal suppression doesn't treat the disease.

48:05It just manages the symptoms. And sometimes those symptoms will just keep on progressing where hormonal suppression

48:11Dr Karan: is not effective anymore. But I do think that hormonal suppression definitely has a role, but it is not treatment and it's not the right fit for everyone. One thing that's really important for people to take away from this episode is just how non-textbook endometriosis can be and how diverse the symptoms can be. And as they say, for many other chronic conditions, if you see one person with endometriosis, you've seen one person with endometriosis, right? You can't paint everyone with the same brush just because it's so unique to the person, genetics, environmental factors. I love the work you do online to debunk myths about endometriosis, but also cover new research.

48:54Dr Karan: I think it's fascinating. it's still a bit of a black box endometriosis I think for a lot of it as well and yeah hopefully we can come up with more solutions and more research as the months and years roll on so Laura thank you so much for joining me. Thank you so much it was such a pleasure.