Endo Battery

Diverse Perspectives on Endometriosis: Dr. Abhishek Mangeshikar on Surgical Solutions and Cultural Impacts

• Alanna • Episode 75

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Unveil the mysteries of endometriosis as it intersects with the rich tapestry of cultural diversity in my latest sit-down with Dr. Abhishek Mangeshikar from the Indian Center for Endometriosis. Dr. Mangeshikar, a giant in the world of excision surgery, shares his expertise on how environmental factors like diet impact this pervasive condition. Our conversation sheds light on the startling under diagnosis of endometriosis across the world. We explore the significance of traditional diets alongside the global variations in disease severity. This is an episode replete with insights that promise to broaden your understanding of endometriosis and its multifaceted global impact.

Imagine living with a condition that intertwines with your daily diet, causing an uproar in your digestive system. This reality is faced by many with bowel endometriosis, a topic I examined in-depth with Dr. Mangeshikar. We uncover why this variant of endometriosis eludes diagnosis and discuss the precision required in surgical treatments. The silver lining we reveal is the transformative relief patients often feel following successful excision surgery, which may alleviate the dietary sensitivities that have long plagued them. This episode is a beacon of hope, illuminating the path to mitigating the gastrointestinal havoc wreaked by this disease.

Wrapping up, our discussion takes a crucial turn towards the holistic approach needed in managing a patient's journey through multicondition care. Dr. Mangeshikar and I tackle the hard truths about the persistence of symptoms post-surgery, such as chronic fatigue and bloating, and emphasize the importance of managing expectations. We also underscore the importance of patient advocacy and the tireless journey towards accurate diagnosis and comprehensive treatment. Every individual's battle with endometriosis is unique, and this powerful conversation underscores the necessity of personalized care and the strength found in advocacy. Join us for part one of a profound exploration into the world of endometriosis care, where every story matters and every voice can spark change.

Website endobattery.com

Speaker 1:

Welcome to EndoBattery, where I share about my endometriosis and adenomyosis story and continue learning along the way. This podcast is not a substitute for professional medical advice or diagnosis, but a place to equip you with information and a sense of community, ensuring you never have to face this journey alone. Join me as I navigate the ups and downs and share stories of strength, resilience and hope. While navigating the world of endometriosis and adenomyosis, from personal experience to expert insights, I'm your host, alana, and this is EndoBattery charging our lives when endometriosis drains us. Welcome back to EndoBattery, grab your cup of coffee or your cup of tea and join me at the table. I'm joined today by my guest, dr Abhishek Mangeshkar.

Speaker 1:

Dr Mangeshkar is a renowned excision surgeon and advocate for accurate endometriosis awareness. As the founder and director of Indian Center for Endometriosis, or ICE, he leads efforts to dispel myths, provide factual information and facilitate discussions on treatment options. With extensive training in laparoscopy and over 2,000 surgeries to his credit, dr Ming specializes in treating various aspects of endometriosis, particularly focusing on bowel endometriosis and imaging advancements. Committed to education, he teaches laparoscopic gynecology and holds esteemed positions on gynecological boards. Dr Ming's mission, through ICE, is to revolutionize endometriosis care in India, advocating for timely diagnosis and expert treatment. Help me in welcoming Dr Abhishek. Mangeshkar. Thank you, dr Ming's, for joining me today. Today is going to be an episode that I've not really done before, and this is something that I have wanted to talk about for quite some time, so this is going to be completely anecdotal for a lot of this, but thank you, dr Mengs, for joining me on this fun and unique episode.

Speaker 2:

Thank you, Alana, for having me. It's a pleasure, as always, and we just spent a great time together at the EndoSummit and this is following up to that, and this is going to be a different podcast from even what I'm used to, because it's very experiential and less evidence based.

Speaker 1:

Yes, which is something that this is we're going to be talking about how or what we see the difference in endometriosis and cultural diversity, whether it's food, whether it's environment. I mean, there's a lot to this that we can talk about, but this is something that I have wanted to talk about for so long, really since my diagnosis, because I remember and this is why this is so fascinating to me and I wanted to talk about it, and you're just crazy enough to talk about it with me. So, welcome to this train. But I remember my doctor telling me in her office. She said, you know, I think I just see a lot of endometriosis patients here, and my husband and I were like, okay, is it because of something in the water? Is it because of our diet?

Speaker 1:

Like we tend to be here in Colorado, a little bit more granola is what they call us and it's, you know, a lot of like the plant-based eating, and then you have a lot of, you know, organic, but then you also have, like a lot of different processed foods that aren't necessarily, I don't want to say whole foods, but kind of whole foods. You know they, they replace foods. So it started us on this mindset of like, okay is this? Is it because of this, or is it just that we're not noticing endometriosis? The same, or is it? Colorado that's different? The environment we really weren't sure. But you're, first of all, an expert excision specialist for endometriosis. But you've also traveled the world. You're like a world traveler You're always traveling.

Speaker 2:

Not by choice. I did my residency in India in OBGYN and it was very interesting that you brought that up because when I was a resident because my father is a famous gynecologist and I used to attend a lot of conferences internationally with him and a lot of the Europeans and Americans were doing very radical endometriosis surgery then and I always came back to India and I asked the question I was like why aren't we picking up this kind of disease and why aren't these surgeries happening here? And then a lot of the so-called specialists at that time were saying we don't have this kind of disease that is so invasive into the bowel, into the nerves, because Indian diets are primarily vegetarian and they're primarily whole foods, so there's not so much invasive disease in the bowel, which was complete rubbish. They were just missing the diagnosis. And once I started identifying the lesions myself after my fellowship, which I did in Taiwan a long time ago so I spent two years there specializing in GYN oncology and then I specialized in endometriosis and then I came back and I realized that a lot of patients were being underdiagnosed or misdiagnosed and a lot of disease that was deep endometriosis, so in the bowel, in the bladder, in the ureters, in the nerves on the bladder, in the ureters in the nerves on the diaphragm, was getting missed and people were getting more focused on the cysts, the ovarian endometriomas.

Speaker 2:

So it is quite prevalent in India, it is quite prevalent in the US, it's very prevalent in Africa, the Middle East and in Asia. But you do see slight variations in the phenotypes of the disease the more you get exposed to different patients from different parts of the world, because India is quite centrally located, so Asia and the Middle East and Australia and some of Europe as well, so we do get patients from all across these continents and countries. So I do see certain variations in pathologies. So in India and the African subcontinent you would get very large endometrial cysts and very severe parametrial disease as well as very severe uterine disease, so adenomyosis, fibroids and all of that, whereas from Western patients or European patients or even Australian patients you won't get such big cysts but you will get deep disease, bowel disease, whether it's in the rectum, whether it's in the sigmoid colon, in the diaphragm, in the small bowel. So you see those phenotypes in those patient populations.

Speaker 1:

Interesting. Why do you think this is? Is it just the food, or do you really think it is the location? Or what is your take on that?

Speaker 2:

We do know that endometriosis has definitely got a genetic component to it, so there is a gene passed down. But whether that gene expresses itself has a lot to do with epigenetics and probably environmental, dietary, hormonal. You know, stress and I don't mean just mental stress, it could be physiological, inflammatory stress that causes whether the disease grows, how it expresses itself and how aggressively it can grow and spread. That determines these certain phenotypes of disease. The short answer is we don't know yet. There should be a lot more studies going on about this, but it's very difficult to get a widespread diaspora, multicultural, multidiverse population to study.

Speaker 1:

Yeah, and I would imagine that part of that comes down to access to care too, because I know in different parts of the world care is not really accessible for a lot of people, so I think it's probably hard to really get a good study based off of what we currently have Unless I'm wrong about that, but that would be my take on that too is like care is not accessible for a lot of people in a first world country, let alone a third world country.

Speaker 2:

Actually I think you kind of nailed it or you hit the nail on the head because from what I said is when you would see more advanced disease from the lesser populations or the lower economy populations compared to the US or Europe or Australia, where they would get early primary care so they would have the cysts dealt with earlier, and the deeper disease, which is more complex and very few people can treat, that kind of gets left behind and filtered through, whereas in the other populations, like India, the Middle East, africa, asia, they would not have such early access to care or there would be delays in diagnosis and treatments. So you would see more advanced disease in those cases, especially when it had to do with cysts in the ovaries affecting the tubes or even uterine disease. That's being allowed to progress because of the inertia of the medical systems in those countries.

Speaker 1:

Interesting. See, this is something that I am intrigued by even more because when I was going through my diagnosis process in treatment, initially it was the thought process of if you eat more soy, you're going to have worse endometriosis. And that's probably not the case, although it can be inflammatory for some people, which would then maybe progress that a little bit more symptomatically.

Speaker 2:

Yeah. So soy, we know, is fight the estrogens and a lot of the disease. We know that endometriosis is very sensitive to estrogen as well as progesterone, but it doesn't have to do with the amount of circulating estrogen in the body. Have to do with the amount of circulating estrogen in the body. It depends on the sensitivity of the receptors on the disease to the estrogen that's already present. So we know that endometriosis can synthesize its own estrogen and also, depending on how aggressive the disease is, how it reacts to the estrogen which would cause a flare up and that is going to kind of trigger that. So we don't have very conclusive evidence in terms of dietary changes and how it does help. There are certain studies that say low inflammatory diets and low FODMAP and all of that, but the evidence is far from conclusive. That means it will work for some people and it doesn't work for some people. So it's quite anecdotal evidence at best.

Speaker 1:

I mean I think a lot of us have become prey at one point or another to if we want to become less symptomatic, or if you're some dieticians, you can cure your endo with certain diet and certain measures that you can take to or supplements that you can take to cure your endo. But what I think more endo with certain diet and certain measures that you can take to or supplements that you can take to cure your endo, but what I think more endo patients will think is maybe I can suppress my symptoms if I change my diet in X, y and Z way. And although I think that there's value to that, I think that you know ultimately, if you eat what your body needs and what it can process overall, we're all going to feel better. Right, like this isn't endometriosis specific, but I think it does lend to the point that just because you change your diet doesn't necessarily mean that you're going to become less symptomatic all the time.

Speaker 2:

Correct. It's quite logical. When you look at bowel endometriosis, for example, if you have disease in the rectum or in the small bowel or even in the sigmoid colon, there's going to be hyperstimulation of the enteric plexus, which is the nervous system of the entire GI tract. So for someone without endometriosis, you know, six cups of coffee a day will cause you mild heartburn and maybe some small amount of bloating. But in an endometriosis patient, because that nervous system is firing, you're going to have a hyper response. So there will be excessive bloating to the amount of discomfort or even pain, and so there are certain sensitivities. You have lactose intolerance that is exacerbated because of the presence of disease.

Speaker 2:

It doesn't even necessarily have to be in the bowel. It can be along the nerves that supply the bowel. So your hypogastric plexus and the pelvic splenic nerves, which supply the rectum and the bladder, function as well. So you have these hyper responses in the bowel and the bladder because of dietary changes as well.

Speaker 1:

So that's an exaggerated response to a normal stimulus yeah, oh, I already told you that if I have to have a bowel resection, you're going to be doing it. Just because you understand that, so well, I understand that it's. It's not, you know, like something that everyone wants to, but you're still going to do my bowel resection if I ever need it.

Speaker 2:

I said if you need it, it's not like a nose job where you can elect and have one. So bowel endometriosis is my favorite subject.

Speaker 2:

I missed my calling as a GI surgeon and I you know, I became a gynecologist, but now I spend more time operating on the rectum than I do on the uterine organs. And it's fascinating because this is this is even with endometriosis. This is the only disease of the bowel that grows from outside in, and everything that GI surgeons are used to grew from inside out. So colonoscopy is the mainstay of diagnosis and it's antithetical to an endometriosis diagnosis. So colonoscopies are useless and anybody who's doing a colonoscopy to diagnose bowel endometriosis that's a big red flag. Secondly, it is very different from what colorectal surgeons or GI surgeons are used to, unless they're specifically trained for endometriosis. What they're used to is you do a big resection of the bowel what they're trained to do for cancer and you remove lymph nodes, you remove blood vessels that supply the bowel and they're taught to do prophylactic colostomies or ileostomies. So that's where you loop the intestines out into a bag for these receptions.

Speaker 2:

But what they don't understand is that this is benign disease. We don't need to take out the lymph nodes. We can keep the vasculature intact and we just need to do a wide excision of the disease. So we don't need to remove a foot of the bowel, we just need to remove exactly above and below the disease and then join it back together, which you're usually able to accomplish without any tension.

Speaker 2:

And our patients are younger and they have better quality of life and healthier. So you don't have to do a stoma. So the risk of a stoma is less than 2% if it's done correctly and depending on the type of nodules. So we never do prophylactic stomas. We don't do it as a preventive measure. Of course we do monitor the patients and 2% of patients may have complications that may require a temporary diversion of the stoma, which is reversed after four to six weeks. So it's never permanent and we have to even spread awareness about this to the colorectal surgeons that we work with that this is a very different disease from what you're used to, so you need to tailor your approach toward that.

Speaker 1:

Going back to that portion of it again. This is why you're going to do any bowel resection that I may end up having in the future, if I ever have one. But I do think something to highlight, or maybe even just to talk about, is that a lot of people are really sensitive to foods and the way it manifests is within the bowel and the rectum, whether that's rectal bleeding, whether that's inflammation of the bowel, whether that's constipation or whatnot. In your experience, is this something that, if given proper treatment, can be eliminated in the way of like the food sensitivities and the way that people respond, or is that kind of a lifelong thing that you're noticing people have even after proper treatment?

Speaker 2:

That's a very interesting question. So if there is disease in the bowel and somebody has food sensitivities, then removing said disease most of the time will eliminate those food sensitivities. So a lot of patients have messaged me later on after they served the reason and said oh, I had dairy, I had gluten, it was fantastic and I had no pain while passing stools and I didn't have constipation, I didn't have diarrhea or any of those things. So it does work. By removing the surgical well, the pathological insult to the bowel, by removing the disease, that the pathological insult to the bowel, by removing the disease, that sorts out most of the problems.

Speaker 2:

But we also have to remember that this has been around for a long time so that nervous system of the GI tract has kind of been hypersensitized so it does take some time to downregulate in some cases. So you know, when it comes to bloating, those symptoms are usually the ones in my experience that take the longest to dissipate over time. So you know, somebody may still have bloating even after their bowel resection but it does kind of wean down and resolve over some time, kind of weaned down and resolved over some time. The most difficult symptom I've had, facing with resolution, is fatigue, chronic fatigue, because this is an immune response in a way where, because the disease is so inflammatory, so there's always this hyperimmune response going on, that kind of depletes energy stores for some level. Get that back on track even after surgical removal and reducing inflammation is a bit of a task. So I think there's a big role for like a holistic approach for that with physiotherapy and maybe even the role of an anti-inflammatory diet post-surgery to kind of bring that down.

Speaker 1:

But I do think to that point. The fatigue point, which I still have a lot of brain fog and fatigue, but it's kind of hard to decide whether that's, or even figure out whether that's endo-related or autoimmune-related or hormone-related, which in my case, because I'm surgical menopause, is likely the case. But also just understanding just because we have surgical removal of this disease doesn't mean that our bodies aren't going to respond long term because of all the other comorbidities, because we get so entranced in the disease that we forget that our bodies still have other things going on. And that's where I think sometimes an anti-inflammatory diet can be helpful. But also understanding that you have to work in other areas. Whether that's EDS I don't know if you've experienced this with EDS patients specifically that's EDS. I don't know if you've experienced this with EDS patients specifically. It's really hard to decipher. Okay, is this an endofatigue or is this an EDS fatigue? Is this a surgical menopause fatigue? Yeah, that's very interesting.

Speaker 2:

I think one of the most important conversations to have between a doctor and a patient is managing expectations right so we can identify. I mean, if you're an endometriosis surgeon, you're basically looking at that.

Speaker 2:

You're saying okay, I can identify this disease and these patients may also have other comorbidities which you like EDS, for example, very difficult to treat. There is no surgical treatment for it. Like EDS, for example, very difficult to treat, there is no surgical treatment for it. Even musculoskeletal disorders like fibromyalgia, osteoarthritis all of those things are very difficult to treat. So, yes, you can treat the endometriosis, but your surgery is not going to treat other conditions. So I think it's very important to be humble in your conversation and manage somebody's expectations when you're planning a surgery for them and you say this is what I've diagnosed.

Speaker 2:

In most cases this is what is going to happen. You will have resolution of these symptoms. But there is a small chance that you may still have persistent pain if you have certain other conditions that are not so easily diagnosed. And if you do, you kind of have to work with other specialists, like rheumatology or pain management or whoever, to help them get to that diagnosis and get the appropriate care for that. So just because you work with a hammer, not all diseases nails. You have to identify what other potential causes of pain might be for that patient and treat patient as a patient and not just as a disease. So to figure all of that out is very important.

Speaker 1:

Yeah, do you notice? Other inflammatory diseases are more prevalent in certain parts of the world as opposed to others are more prevalent in certain parts of the world as opposed to others.

Speaker 2:

That is interesting, but I think it's more about how much access patients have to those kind of specialties to make those diagnoses. So I work very closely with a rheumatologist and we're putting together data where we have overlap between endometriosis patients together data where we have overlap between endometriosis patients, and she primarily treats fibromyalgia, eds and other conditions, musculoskeletal connective tissue disorders. So we're putting together a table of those patients to see what the overlying similarities are. How did surgery affect them in terms of quality of life and pain scores? So we track that and then we use controls from patients without any of these conditions and see if there's a big difference in their outcomes from surgery when it comes to decrease in pain scores and improvement in quality of life.

Speaker 1:

Interesting. You know, I think that a lot of this is my internal brain. Thinking through my scenario personally, the more people I'm meeting, the more I'm realizing that a lot of us have other conditions. But I can tell you from my experience that the care and the treatment has ultimately been the deciding factor for a lot of people. But I do see that there is more patients coming forward knowing that they have like EDS or fibromyalgia and things like that. Why do you think that is in your opinion? I know this is opening probably a can of worms, but Right.

Speaker 2:

So one is, we have to look at the different systems of healthcare in different countries.

Speaker 2:

Systems of health care in different countries, so in the US it's either insurance or you're going out of network and that's a whole other challenge to get the diagnosis In Canada. Canada is like the UK and similar to Australia where they have similar to the NHS, so it's a public health system you have to go to a referral through a general practitioner. If they diagnose endometriosis, you go to a specialist center and so on and so forth, and then even in Germany they have to kind of make their way to get referred to an endometriosis center once they have the diagnosis. So it becomes many stumbling blocks to get through, whereas in India patients in private care can approach whichever doctor they want, they want. They can, you know, kind of get onto the internet, find out who is the endometriosis specialist near me and they can find that person and go to them for the appropriate treatment and diagnosis.

Speaker 2:

So it works differently in different countries when you have these other diagnoses, because in countries in the West primarily they do the family practice medicine or the general practitioner is very good at understanding symptoms and getting diagnoses and referring to the appropriate specialists, which the patient who's kind of doing their own research may not be able to do that. So if they go online and join their support groups they may have a diagnosis. And if they go even to an endometriosis specialist, it may be difficult for them to get a diagnosis of EDS because it's a very difficult diagnosis to make unless you're treating that disease. So when it comes to neuropelviology and you're looking at vascular entrapments of nerves, a very good endometriosis surgeon may still not be able to make that diagnosis unless you know how to make that diagnosis. So at the summit we saw Anna. You have a brilliant presentation on neuropathy. She's changing the game.

Speaker 1:

She is. I want her to be my new best friend. Sorry, you've been removed. She's my new best friend, just kidding, we're very good friends, so it's all right.

Speaker 2:

I have tremendous respect and admiration for her. So, no, no problems there. Perfect, and so what we have with that is we're able to make better diagnoses now. We're understanding more about pain and not just looking at one particular disease and we're looking at pelvic pain as a whole extra kind of syndrome almost, but looking at different diagnoses and putting it all together.

Speaker 1:

I'm excited for the future to see what comes of that, because you know I look at future generations and I'm so hopeful that they don't have to walk through what a lot of us had to because of the new advances being made and the understanding of the disease and other diseases that kind of are endometriosis counterparts, if you will.

Speaker 1:

I'm hopeful that maybe we'll find a way to differentiate between the multiple different things that we tend to carry with us, because I think it is hard for the patients to put together their care and treatment, and I think maybe that's the bigger question and maybe the bigger picture here is that because we do deal with so much, it's hard for us to understand where we should go to find our care and treatment. The reality to this too and maybe you can speak to that is that you're an endometriosis surgeon. You're not an EDS specialist, so you're not going to be able to treat EDS, but you could the endometriosis. But adversely, eds is. You know, doctors cannot treat endometriosis, and so trying to figure out where we need to go, what we need to do in our next steps, is really challenging right now, but I'm hopeful in the future that maybe we'll be able to have a better path, a clear path to be able to manage that.

Speaker 2:

Yeah, that's very true. One of the things you brought up was my biggest personal grouse with the diseases is that the onus to get the diagnosis is falling on to the patient. The onus to get the diagnosis is falling on to the patient.

Speaker 1:

Thanks for joining us today, and if you thought part one of this discussion was fun and intriguing, join us for part two of this discussion, as Dr Mingz continues to impart his knowledge and wisdom when it comes to endometriosis in patient care. You won't be disappointed. Until next time, continue advocating for you and for those that you love.