Pt. 2 with Dr. Abhishek Mangeshikar: The Silent Struggle of Endometriosis A Global Insight into Patient Care

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 as we continue with our guest, dr Abhishek Mingashakar. The first part of this episode left us with a lot of thought-provoking conversation. If you haven't already, I'd go back and listen to part one, but this is where we left off and where we're going.

Speaker 2:
1:01

One of the things you brought up was my biggest personal grouse with the diseases is that the onus to get the diagnosis has fallen onto the patient, which shouldn't be the case. They should be getting the diagnosis a lot sooner and a lot more clearly and accurately than they do currently. There's too many patients that fall through the gaps in the systems due to lack of access of care or even just lack of awareness among the medical community. That is causing a lot of problems. My biggest problem is patients who have not the ones who have severe disease, but who've had multiple failed surgeries and then we have to do a surgery. It makes life a lot more difficult and a lot more complex, but what was already complex surgery in the first place is just adding to the levels of complexity on this. Exudate on this. Now, the second part was when you have access to care among the patient population. You're right.

Speaker 2:
2:18

As an endometriosis specialist, I can't diagnose EDS, I can't treat it. So I think another point we need to is we need teams, so multidisciplinary teams, not just for surgery but also to treat other conditions that coexist with endometriosis patients, to treat those symptoms and conditions as well. So rheumatology is a good start. Chronic pain specialists are very useful and if you want to go down the road of alternative therapies, I think those can be tried. I don't know how much evidence we have for them, but there is some coming about. There are some publications that speak to it. I personally don't have any experience with it, but I don't dissuade anyone from trying it if they want to and it gives them relief.

Speaker 1:
3:07

Right Bottom line is that we all want symptomatic relief. It's just managing how to get there and I have to say I told you this is going to be everywhere. This podcast is not my typical podcast, but it's because I could pick your brain for days and still learn a ton.

Speaker 2:
3:24

I wouldn't have that much to.

Speaker 1:
3:25

So it's probably fair. But you know, part of this too is like understanding the steps of the disease. So many of us live with this disease for years and years and years. We get surgery, we get proper treatment and we still struggle with muscular skeletal issues and this all can correlate right. But then we feel like, oh, maybe my endometriosis is back. We hear this a lot. Right, we hear, well, I had to have another surgery because of the endometriosis but they didn't find anything. And this is where it gets tricky, because then that leaves the patient in limbo to figure out what comes next. Is it pelvic floor PT, or is it that you have to work with a trainer, or is it so there's other modalities? Are we seeing I don't know if this is relevant or not, but are you seeing a prevalence in people who feel like they have reoccurrence of endometriosis in certain parts of the world over others? I don't know if that makes any sense, but does that make sense?

Speaker 2:
4:39

No, it makes perfect sense. So I think the biggest fear that I've seen in my patients is that they're worried about their disease coming back. So, years after surgery, if there's any pain that comes in, the first thought the brain jumps to is that oh, my endo is back, because that's the thing they don't want to go through again. Furthermore, speaking of musculoskeletal issues, I see a lot of iatrogenic musculoskeletal disease which is secondary to years and years of hormonal suppression, which has kind of led to osteoporosis, lupron and GnRH agonists, and at the age of 26, they have osteopenia and early onset arthritis. This is not a disease they were born with.

Speaker 2:
5:31

This is a disease that has been given to them by years of these drugs, so that is something that really does need to be addressed. We do need to understand the consequences of long-term administration of these drugs in the medical community. The pharmacologic companies take no responsibility in educating it. They say just give this to the patient, she'll be asymptomatic and she'll be fine. And then you see down the line, you see these conditions cropping up very frequently nowadays. So I think that is one of the biggest problems.

Speaker 1:
6:06

And I think this is a good point to bring up, because with these GnRH drugs are they more accessible in other parts of the country. So we're seeing more of the muscular skeletal problems in certain parts of the world as opposed to others. Because this is a question I've had for a while now is you know, in America we have access to a lot and in fact that is their primary go-to for any care treatment in the general OBGYN arena. So for us, like I feel like we're seeing more and more people continue to have pain post-excision and jump to reoccurrence, when actually it's not reoccurrence, it's because of these drugs. Is it more prevalent in countries like America, or are we seeing this worldwide?

Speaker 2:
6:53

So when we speak to recurrence we have to talk about whether it's true recurrence, whether there's disease that was maybe not completely removed, that's continued to grow, that was maybe not completely removed, that's continued to grow, that's growing now, or microscopic disease that's you know, progressed or you know. Or whether it's persistence of disease, where somebody had a big nodule in the bowel and they had two or three cysts removed and they still have disease in the bowel obviously. So that's not a recurrence, that's persistence of disease. It's like I tell someone you know, if you have appendicitis and somebody removes your uterus, you still have appendicitis at the end of the day. So if you have disease in the rectum and you remove your uterus or your ovaries, you're still going to have disease in the rectum. So it's more about making the diagnosis completely and removing the disease.

Speaker 2:
7:42

So when you look at general recurrence rates reported by ACOG back in the day, they were 50 to 80%. Okay, when ablation was standard of care. But when you zoomed in the microscope onto endometriosis centers the recurrence rates dropped. So the recurrence rates for endometriomas were 10 to 15%. The recurrence rates for bowel endometriosis if you had a resection, the recurrence rate was 0.5%. If you had a disc excision it was 1%. If you were shaving it was about 6% because you leave some degree of fibrosis behind, and for deep endometriosis it's between 3% to 5%, so in the pelvic side wall and the uterine sacral.

Speaker 2:
8:26

So very low recurrence rates compared to 50 to 80%. So that is where we need to define standard of care to differentiate between true recurrence and persistence of disease. And when I look at my patient population that I follow up with, I see most re-operations would primarily happen due to adenomyosis, at the most. Of course there are some who have. I can remember very specific cases at the top of my head that had a recurrence in the bowel, but very low recurrence rate compared to if adenomyosis progresses and becomes symptomatic and then they need treatment for that, which is a much more difficult disease to treat than endometriosis, because your options are kind of limited and also when you have cysts, cysts tend to have a slightly higher recurrence rate and not all recurrence cysts need reoperation unless they become very large or very symptomatic.

Speaker 1:
9:33

Is this prevalent worldwide in your experience? Because, culturally, I mean, I feel like we are a culture here in America that we want everything accessible. I don't know if that's true everywhere, but here it is, and so we'll take anything we can to alleviate symptoms, and that's what's accessible. Are these drugs? So when you're looking in Asia and other parts of the world, are you seeing the same trend with muscular skeletal issues postoperatively?

Speaker 2:
10:02

Yes, speaking about the drugs, when you look at OBGYN in general, there's a tremendous reluctance to do surgery for the disease. Fair enough, it's a very difficult surgery to do surgery for the disease. Fair enough, it's a very difficult surgery to do. Very few people can do it and even fewer can do it successfully. So why upskill when you can? You know medicate Because the belief is that if they keep the patient on suppression, the patient's not going to bother them with symptoms, right. So they say I'm in pain, do something.

Speaker 2:
10:39

And now, suppression doesn't work for everyone and but if somebody is put on suppression, say 60 of the time they will have some resolution of symptoms and I mean only symptoms, not resolution of disease. So but they don't understand the downfall because this delays your diagnosis, this delays treatment. Just because there's a down regulation of symptoms doesn't mean that there is a cessation in the progression of the disease. The disease can still grow in the absence of symptoms. It can still go and cause a block in the ure. The disease can still grow in the absence of symptoms. It can still go and cause a block in the ureter which can cause the kidney to fail. It can go and cause an obstruction in the bowel that can lead to an intestinal obstruction which can be life-threatening. So in those cases it's very important to have that diagnosis before prescribing medical therapy, because you're kind of endangering somebody's life when you're doing that.

Speaker 2:
11:35

If you're allowing an obstruction of the ureter to turn into kidney failure, if you're allowing a bowel nodule to turn into an obstructive lesion, you're you know, if you go into intestinal obstruction it's life-threatening. Then you need big emergency surgery and usually in the casualty of the A&E they're not going to do a laparoscopy, they're going to do a big open surgery and do a resection of the bowel and say, okay, at least it's not cancer. So those are true stories that have happened to patients and then, like I said, there needs to be more awareness, more awareness. But there is a big uh that between, especially, fertility specialists and uh endometriosis surgeons, where they're more. They're like, okay, we'll get the patient pregnant, but we won't treat the disease. So that's how it works.

Speaker 1:
12:25

Which is interesting to think about, because and correct me if I'm wrong if you were to take a drug, say Lupron, it does affect your fertility, but it doesn't treat the disease, Am I? Right in that assumption, like the ovarian reserve can be diminished because of this, or is that completely anecdotal?

Speaker 2:
12:44

So estrogen levels. So the Lupron is a GnRH drug anode that acts on the levels of the brain, so it goes and competes with estrogen receptors, so it drops estrogen levels. And there are a lot of studies and I think Dr David Rudwine showed that there's no great recovery of estrogen levels even after cessation of Lupron therapy and they suppressed that data as well. There are protocols in fertility treatments where they give short doses of GnRH agonists to downregulate the ovaries and once that effect goes off the ovaries overproduce so you get more of a response to produce AIDS. So that's why they use those drugs and it also for them. It's symptomatic relief for the patient and it downregulates, so it fulfills their purpose for the upcoming IVF cycle.

Speaker 1:
13:43

I told you this episode is going to be random. We're everywhere today, but it's all good. I feel like I'm sitting down and just getting the answers that I have had brewing in my brain for a really long time. So thanks for joining this train with me of crazy and answering a lot of those questions, because I think it's relevant and I think these are questions that I hear all the time from patients who are walking through this journey, not so much on like the anecdotal part of like worldwide endometriosis and persistence of disease and things like that, but that's curiosity on my part.

Speaker 1:
14:23

It is important to just kind of note that it doesn't really matter where you are in the world, what diet or environment you're in. Endometriosis is endometriosis. It's invasive at its core and you're going to have to figure out care and treatment, which is what really is the hard part, or a diagnosis actually, for that matter. Diagnosis is probably the hardest part to get for a lot of people, but I've always just questioned that the relationship between cultures and demographics and endometriosis. So that answered that. Thank you for that. That's good, anecdotally, of course, but also just to talk about the different care and treatment that people get around the world. I think that we talked about this a lot at the summit. Actually, it's a topic of conversation that I think we need to continue having about endometriosis and getting people worldwide better care and diagnosis.

Speaker 2:
15:16

Dr Mosbrocker was saying it's very interesting because she's had a couple of patients of Indian origin that she treated and she's noticed certain phenotypes. She was asking me what my experience was and I said you know, it would be a very interesting study to have specialists from different parts of the world compare their patient population and see where they primarily have disease and if there are any, you know geographic trends of whether, say, bowel endometriosis or ovarian endometriosis or, you know, diaphragm or thoracic endometriosis. So I think that would be a very interesting study to put together from different centers and it would take a lot of work and coordination among different centers.

Speaker 1:
16:04

It would. But I mean, I think to that point too it would be interesting and I think it would probably be beneficial long term. But it's also that's kind of putting the cart before the horse. We, we first have to get people diagnosed at an earlier stage.

Speaker 2:
16:20

I think that's going to be key in understanding that portion of the disease diagnosis is a very interesting topic because there is a movement in some of the countries where they're banding a hashtag that diagnosis is therapy but diagnosis is diagnosis. Yes, that's step one. I mean you should be completely prepared with your diagnosis before you attempt surgery.

Speaker 2:
16:48

There was a big debate in the early 2000s where they would see a big endometriosis surgeon would say I don't need that diagnosis, I'll put the scope in and figure it out. But now we know that there is such severe endometriosis that can be affecting the nerves which even when you put a scope in your pelvis would look normal and you'd have to really dig down deep along that nerve to pick out the disease. So unless you were able to make that diagnosis clinically or via imaging, you would never know how to treat this patient. So I think diagnosis is important, but only to help you plan your treatment.

Speaker 2:
17:25

Diagnosis is not a substitute for treatment. You're not going to replace good surgery at the end of the day, and good surgery will never happen without good diagnosis. So they kind of go hand in hand and we need to understand that distinction and I think you either if you're an endometriosis surgeon, I believe you have to make the diagnosis yourself. So do your own ultrasound or read your own MRI, or work with someone who you trust and who you can pull up to the OR and yell at them if they miss something, so that they learn. That's very important to have that kind of relationship in your team. So I think that's how teams have to work. You can't have a radiologist sitting 100 miles away and you call them up and say okay, what do you have? And then you go into surgery and it's not matching with what they found. And then there's no accountability and there's no learning process there right, okay, let's make a roadmap.

Speaker 1:
18:24

So first we need diagnosis, and then we need a roadmap for surgery and treatment. And then what comes next after that? Post-operative care with physical therapy, physiotherapy what else am I missing?

Speaker 2:
18:43

Occupation therapy, mental health, sexual therapists, whatever the problems are. So each patient is different.

Speaker 2:
18:54

You have to tailor their therapy to what the problems are. So each patient is different, so you have to tailor their therapy to what the problems are and you have to fix or attempt to diagnose and then treat everything. So it's very important to have a good team and a good network of different specialties at your disposal, and I think it's easier in some countries, like in India at least the way I work, it's private care, so we have everyone accessible and pretty close by, so it's easy enough to do. But I understand limitations in countries, especially in university hospitals or in academia, where everybody's kind of doing their own thing and they don't have that much time to dedicate to a specialty that may not be considered their own. So there are challenges in different countries. So if we're going to create a roadmap or a template, it has to be adaptable to different working environments.

Speaker 1:
19:51

And then, once we get to that point, can get more research. This is a big picture.

Speaker 2:
19:57

Research is very difficult because you get research from, mostly from academia so university hospitals which do the least amount of work or the least challenging work and I'm speaking broadly. I'm sure there are some university hospitals that do fantastic work, but usually most cutting-edge centers are private care that are doing that and then to publish and do your own research becomes your own responsibility. The expenses come out of your own pocket. So if you're paying research analysts or statisticians to track your data, you're paying it out of your own pocket, which may not be incentive enough for most people yeah you know the guy I trained with, Forrest Roman in France.

Speaker 2:
20:44

The French have a fantastic database for endometriosis care so everything goes into national database and everything is entered. He personally goes and enters it after each surgery so everything is logged and they can extrapolate data and come up. They come up with the best papers on endometriosis because they have such fantastic data entry and records and he pays his research team out of his own profits. He's a very dedicated guy. It doesn't really work in other countries where you're resource limited and or some people just may not be interested in putting their research out. They just want to do their work.

Speaker 1:
21:24

Yeah, so maybe we need a research database where all the physicians can put in their data. So anyone out there who's a tech guru we've already clarified that neither one of us or that should make a database for all the doctors to put all their information in, and then we could have better data worldwide. I just solved the world's problem, done.

Speaker 2:
21:46

But see again, I can come up with more problems for that, because does everybody speak the same language in endometriosis? Some people use stage 1, 2, 3, 4. Some people use the AGL classification. Some people use the NGIN score. How many people are making complete diagnosis and how are you going to extrapolate all that data? Yes, you can. The French do it very well, but they have standardized data entry. Now to get consensus about data entry is you're going to have to take the world's top endometriosis surgeons and convince them that this is the way, and from my experience, any surgeon tends to be the most egoistic person in the room. So to convince them that they have to change the way they're thinking and doing things is a Herculean effort at best yeah, that's true, but I like your optimism and I think we should work towards that.

Speaker 1:
22:43

I was just trying to solve all the world's problems here. That's all all the world of endometriosis. If we could just solve it with one app, wouldn't that be amazing? We're not there yet.

Speaker 2:
22:54

Well, they trying, not for lack of trying. I mean, mauricio Obrado came up with the AGL classification. It was an app that's quite fantastic. Even the enzyme system is brilliant. So I've seen MRI reports from countries where I don't speak the language and I didn't have to use Google Translate because they wrote the enzyme score at the end and I knew exactly where the language. And I didn't have to use Google Translate because they wrote the angioenesis score at the end and I knew exactly where the disease was.

Speaker 1:
23:19

So I knew how to treat that patient Interesting I, you know. And that's why I think it's important to talk about worldwide endometriosis, because we get stuck in at least I do in my little American bubble where I don't understand some of the challenges that people face worldwide or that doctors face worldwide. I mean, I think that that's I mean a whole nother topic that we could talk about another time. But I do think that just the barriers that we face in endometriosis isn't just the disease, it's cultural language, diagnostic, it's the list goes on. So it's a good point. Oh, my goodness.

Speaker 1:
23:55

Okay, this is a lot to process and I hope that we can continue having conversation surrounding this and be as sporadic as possible in the future, because this is how we, this is how we talk at the dinner table, this is we talk about all the different things, and this is why when I tell people, you know, join me at the table. It know, join me at the table. It truly is joining me at the table in these conversations that are everywhere but also very informative, because they're part of this conversation, what we've talked about today. Everyone has a piece of that. We all have a place at the table of endometriosis, where we can talk about it and we can expand our horizons and knowledge.

Speaker 1:
24:36

And it doesn't have to be uniform all the time. It can be conversational. So that's why this is so good. And, of course, you're amazing all the time, dr Manks, thank you so much for your time. Thanks for joining me today. Thanks for everything you're doing groundbreaking research on your own thought process, everything. Also, again, if you need a bowel resection, he's a great surgeon for that.

Speaker 2:
24:59

So thank you for having me and for making it such an easygoing informal conversation. I think you have a natural gift that gets people to just keep talking and kind of self-incriminate as well. You could have been a lawyer.

Speaker 1:
25:17

Gonna need a lawyer. No, anytime. You know you're welcome here anytime, anytime at the table. So until next time, everyone continue advocating for you and for those that you love. Thank you.