Endo Year Reflection: #9

Welcome to EndoBattery, where I share my journey with endometriosis and chronic illness, while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own. Believing that open dialogue helps us grow and gain new tools always align with our own. Believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience and hope, from personal experiences to expert insights. I'm your host, alana, and this is IndoBattery charging our lives when endometriosis drains us. Welcome back to IndoBattery. Grab your cup of coffee or your cup of tea and join me at the table.

Speaker 1:
0:46

As the year winds down, it's easy to feel like time is slipping through your fingers, but that doesn't mean we should let our batteries run dry. That's why the IndoYear Reflection Series is here to look back in smaller, more manageable segments. Think of it as a quick recharge with enough inspiration and insights to keep you going. One of the guests who brought so much passion and knowledge to the table this year was Dr Abhishek Manga-Shikar. There's something special about sitting down with a friend who not only makes you laugh but also brings a level of intelligence that leaves you in awe. Dr Manga's thought-provoking insights fueled conversations that were equal parts fascinating and enlightening. In episodes 75 and 76, he did not disappoint.

Speaker 1:
1:31

I love how he brings a broad experiential perspective to endometriosis. For example, he broke down why different areas of the world seem to experience more or less advanced disease, and it all comes down to access to care. Experience more or less advanced disease and it all comes down to access to care. But before diving into that, he shared his thoughts on why some people with endo are more symptomatic than others. I was on the edge of my seat listening to his theories. Take a listen to why I was so fascinated.

Speaker 2:
1:59

We do know that endometriosis has definitely got a genetic component to it, so there is a gene passed down. 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. 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:
2:52

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:
3:23

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 you know 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 2:
4:19

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:
5:07

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. So that's an exaggerated response to a normal stimulus.

Speaker 1:
5:32

If that doesn't leave you with a mix of questions and fascination, you might not be as nerdy as me, but don't worry, there's more. In episode 76, dr Mengs delivered valuable information about a question many of us have asked Is my endo back? He touched on why pain isn't always caused by endo itself, but often by a secondary pain generator. I'm just going to let him explain this.

Speaker 2:
5:59

So I think the biggest fear that I've seen in my patients is that they're worried about their disease coming back right. 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 Right, because that's the thing they don't want to go through right 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. I've seen people who had like 24 shots of 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. This is a disease that has been given to them by years of these drugs.

Speaker 2:
6:53

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, oh, 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:
7:25

Dr Ming's explanation of reoccurrence and persistence was a real light bulb moment for me. For years I was confused about the difference, and I know many others feel the same way. The way he breaks it down how reoccurrence and persistence are connected to how endo is treated is so important. He also highlights why looking at success rates and approaches when choosing a provider or surgical plan is critical. Here's a snippet of him breaking it all down a little bit better than I could.

Speaker 2:
7:54

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'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 right when.

Speaker 2:
8:43

So when you look at general recurrence rates reported by acol back in the day, they were 50 to 80 percent. Okay, when ablation was standard of care. But when you zoomed in the microscope onto endometriosis centers, the recurrence rates dropped. So the recurrence 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 uterus.

Speaker 2:
9:28

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 on top of my head that had a recurrence in the bowel, but more 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, but not all recurrence cysts need reoperation unless they become very large or very symptomatic.

Speaker 1:
10:34

Once he touched on surgical approaches, Dr Ming shifted to discussing medical management and risks versus benefits of using symptom suppression medications. He highlighted why these treatments can sometimes be dangerous. I'll let him explain.

Speaker 2:
10:49

Now, suppression doesn't work for everyone. 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. But they don't understand the downfall because this delays your diagnosis, this delays treatment. Just because there's a downregulation 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.

Speaker 2:
11:22

It can still go and cause a block in the ureter which can cause the kidney to fail.

Speaker 2:
11:27

It can go and cause an obstruction in the bowel that can lead to an intestinal obstruction which can be life-threatening. So these 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. 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. But there is a big battle between of heads, between, especially, fertility specialists and endometriosis surgeons, where they're more, they're like, okay, we'll get the patient pregnant, but we won't treat the disease.

Speaker 1:
12:32

I'll admit I hadn't considered the risks to the extent that he laid out. I knew symptom suppression didn't work for me. I took GnRH Agnes for years and my endo only got worse. That's why I've been such a strong advocate for addressing the disease at its core rather than just covering it up. But Dr Mengs reminded me how important it is to have all the information and tools at your disposal to make the best decisions for your care.

Speaker 1:
13:00

As we look to the new year, many of us are considering ways to address our health head on. Let these episodes be your map, filled with insights, directions and actionable information. Whether you're gearing up for surgery or exploring medical management or just trying to make sense of it all. Dr Ming's expertise is invaluable and I'm so grateful for the insights that he shared not only with me but with you. Thank you for joining me at the table for this reflection. If you wanna hear more, the full episodes of 75 and 76 are available on all streaming platforms. Make sure you subscribe and turn on your notifications so you don't miss the next Indo-Year Reflection episode. These episodes have been so life-giving to me, as I hope they have been for you. Take care of yourself and know that your journey matters. You're not alone in this and every step you take, big or small, is worth celebrating. So until next time, continue advocating for you and for those that you love.