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I'm Hormonal | functional hormone insight + advice
If you're looking for information on women's hormone health, how to support your menstrual cycle, and what you need to know for long term wellness--look no further. I'm Hormonal host, Bridget Walton, provides you with the information you need to get your hormones in balance so you can feel your best.
I'm Hormonal | functional hormone insight + advice
Understanding endometriosis with Andoeni: myths, early symptoms, and your options
This week, Bridget talks with Andoeni about all things endometriosis. This episode is for you if you have endo, if a friend has endo, or if you are curious about this condition that impacts approximately 1 in 10 menstruators.
You'll learn about:
- signs and symptoms
- myths
- options for remediation
- resources
- lifestyle changes to consider making now
Check out Andoeni's newsletter here or connect with her on Instagram or Tiktok (@cuerpocurativo). Not a Spanish speaker? DM her for an English version of her downloadables.
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Welcome to I'm Hormonal, your source of information about women's hormone health and how to support your body. Naturally, I'm your host, bridget Walton, and I'm a certified functional hormone specialist and menstrual cycle coach. I am on a mission to hold these hormone conversations with as many menstruators as possible because you deserve easier access to accurate information about what's up with your unruly menstrual cycle and with your fertility mysteries. Don't you think it's time that we figure this out once and for all? Hey friend, welcome to I'm Hormonal. I'm your host, bridget, and today I'm really excited to bring you an episode where I had on Andoany. She's going to talk to us about endometriosis. This is something I've been wanting to talk about on the podcast for a while because you know, endometriosis endo for short is not uncommon among menstruators, but what is less common is diagnosis or other acknowledgement that endometriosis is what a certain menstruator is dealing with. So certainly we will hear this from Anne Duany, who is so passionate about spreading the word and sharing information about endo. But I just think it's so important to know for yourself, for your sister, for your friend, for somebody else who is working through and dealing with really debilitating, painful cycles each month. So we will get to that in just a second. I want to say welcome. Thank you so much for hanging out with me this week while you are driving or brushing your teeth, whatever you're up to out there. If this is your first time listening, then welcome, welcome.
Speaker 1:I am just about a year into doing this podcast, which I started because I really feel passionate about sharing the information that I know and that we all kind of collectively know, so that we can better honor our bodies, better understand our bodies and, overall, so you can take what you hear here, implement it, make some tweaks and changes to your lifestyle and really understand how the things that you do in your daily life whether it is through your exercise, through what you're putting into your body, through your stress levels you can see how those things really tie into what your menstrual cycle is like and how that's an overall indicator of your health. With that being said, I need to remind you that the information I share with you is for educational purposes only. It should definitely not be used as a replacement for any sort of one-on-one support or advice medical advice from a licensed practitioner. So keep that in mind as we talk through this episode. Now, andwani is a marketing consultant by day, but she has dealt with menstrual pain debilitating menstrual pain since she had her first period, and it was 11 years until she received her diagnosis of endo. So now, as I mentioned, she works on spreading awareness and education to both patients and to doctors about this debilitating disease that affects about 200 million people worldwide.
Speaker 1:For you a good listen, then share it with a friend or sister, and if you want these episodes to keep showing up in your feed there, then go ahead and follow or subscribe to the podcast. If you want to connect with me outside of the pod, you can find me on Instagram at Bridget Walton, alrighty gang, enjoy, and I will see you on the other side. I'm so glad to have you with me today because I've been wanting to talk about endometriosis on the podcast for a while now. It's not exactly a hormonal condition, right? We'll get more into that in a little bit here, I'm sure, but I was hoping we could just jump right in and I want to hear what are the most common misconceptions that people come to you with, or what do you wish that everybody knew about endometriosis?
Speaker 2:There's so many, as we were saying earlier, but I would say probably number one thing is it only presents itself when you're in your mid twenties, late twenties, maybe even early thirties, and that's something that a lot of people don't understand that actually you can be born with endometriosis, but it doesn't really activate until you start your fertile life, and that could be from eight years old, that can be from 11 years old, 12 years old, which is like an average age, so you can actually start already having symptoms even before, though, like maybe even some gastro issues, because these lesions are starting to grow, so they kind of just get like a like an explosion of growth when you start menstruating, because they're reactive with estrogen. Um, another thing, a huge misconception that actually a lot of doctors still promote as well, is that you can get cured with the hysterectomy, and that's not necessarily the case, um, and that's a huge issue, because there are a lot of young women who maybe already know at a young age that they don't want to be moms which is, you know, a great thing for them and they already go through a hysterectomy, thinking that, you know, maybe your quality of life does improve because you know you don't have periods anymore, you don't have to deal with them every month, but if they still leave you, your ovaries, these endometriosis lesions actually can produce their own hormones as well, and so they're kind of just, you know, acting on its own with its own mind. And endometriosis doesn't only live in your pelvic area, it can grow pretty much in any part of the body. So that's a huge thing that a lot of doctors are also very uneducated on this and they promote hysterectomy. They promise you all these things and you go home with the hysterectomy and a few months later, even years later, you're still having symptoms, and that's a huge thing that a lot of people don't understand. And that's a huge thing that people don't understand.
Speaker 2:Something else that is very prevalent in the US is that you need a surgery to get a diagnosis, and I know that in the US they promote that a lot. That's probably the only way to do it in the US versus in other countries like Brazil, for example, which is the leading country in endo research. They're actually shifting completely the paradigm of endometriosis and the process of it and the diagnosis, and they actually the gold standard of it is to have an ultrasound and an MRI prior to surgery. That acts like a map of like. Okay, the doctors know kind of exactly where they're going to go in, and once they're in the surgery, they're also going to do a whole body check to see if, by chance, there was any other lesion that they missed.
Speaker 1:Yeah, okay. So you said a lot of good stuff there. I'm going to say some of it back to you so we can do some things.
Speaker 1:No, no, it was perfect. The main takeaways that I got from you were that you know, the listener should be aware that endometriosis signs and symptoms can show up in our younger years. And to add on to that, too, I saw a study or a stat that two-thirds of teens who report pelvic pain like chronic pelvic pain ultimately do go on and become diagnosed with endometriosis. So I guess, just to echo that, the other thing I heard you say endometriosis, um, so I guess just to echo that the other thing I heard you say right, I'm excited to hear about what's what they're doing in brazil, right, because here in the us, or for a listener who doesn't know, the only the only way to be diagnosed for sure with endometriosis is through a laparoscopic surgery, right, yes, okay, so that'll be really interesting. And, um, I definitely want to dig into what are the main signs like for a listener who is just hearing about endometriosis today, like what is endo? We talked about lesions and things like that. So, yeah, yeah, tell us a little bit about those signs?
Speaker 2:Yeah, so the most common symptoms are extreme menstrual pain, so chronic pelvic pain, to the point where you're literally just bedridden every single month or you can be vomiting from the pain, you can even have the fainting from the pain. So that's one of the most common symptoms. The second most common symptom is having also diarrhea during your menstrual period, even though loose stool is pretty common and pretty normal to have. But constant diarrhea during your menstrual period, even though, you know, loose stool is pretty common and pretty normal to have, but you know, constant diarrhea during these times is not normal as well. Second thing is like chronic fatigue. So you know, especially when you're in your, you know, early twenties, it's like your prime time and if you don't feel like you're waking up with, you know, rested and everything, everything that could be a sign that you have endo.
Speaker 2:Um, there are the difficult thing about endo when it comes to diagnosing it. Um, you know, they do say like pain is the number one red flag that you have it. But there are, you know, a good population of like 20 of women who are asymptomatic. So it's also very difficult because each woman presents symptoms very differently and very uniquely and also the severity of endo doesn't really correlate with the pain. So someone could have, you know, extreme deep endo with absolutely no symptoms, and someone with like stage one of endo can have all the symptoms as if they were like invaded with endo. So it's very complicated, which is why it's important to you know, bring this awareness to teenagers, because these symptoms are basically screaming at you when you're 15, 16, but you don't even realize that because you don't even know what endo is.
Speaker 1:Yeah, it's like. Correct me where I'm wrong, right, but of course, as you described, extreme pelvic pain during menstruation, but at other times in the cycle too, right, it's not just localized to during menstruation, exactly.
Speaker 2:Yes, so it could be pain also while you're pooping, basically. So that's very common as well. Pain during sexual intercourse as well, which a lot of women actually get used to having pain, especially when you know, when you. You know if you start having sex and you already feeling pain, you think and kind of you associate that pain comes with sex.
Speaker 2:And this is something else that a lot of women have to unlearn and understand. Like, oh, we basically normalized, um, having pain while peeing, having pain while pooping, having pain while having sex. It's just this normalization that happens as the years go by, up until, if you even are able to receive a diagnosis.
Speaker 1:Yeah, so in situations when someone is experiencing pain during their cycle or during their period, that would presumably be because I'm doing air quotes over here for listeners normal period pains that are an effect of our body releasing prostaglandins to help shed the lining of our uterus, and that's what causes the pain, which is then amplified by the endometriosis lesions Now outside of menstruation. Is that pain normally caused? Because I would think it's, because the lesions are like causing scar tissue that connects different organs in the pelvis right, and so it's not the actual, okay, perfect.
Speaker 1:So it's not that our body is releasing prostaglandins all the time, or somebody's body who has endometriosis. It's that the organs are getting you know, paper mache Like kind of pulled together, yeah, yeah, and what causes the reaction is inflammation.
Speaker 2:So endometriosis is a systemic disease, inflammatory disease, where the lesions that start growing outside are similar to the tissue of the endometrial lining, but they're not the same, um, they're not the same type of tissue or made up the same type of material. Per se, air quotes as well, um, and so when we are living in constant inflammation, constant information, that is when we are getting those flares, those endo flares, which is can be the endo belly, which is like extreme bloating, extreme and painful bloating, where you literally look pregnant, um, and you're gonna have, especially when it comes to again, those pains with pooping and peeing and all this stuff like that, um, and the chronic fatigue. So that's when, again, this lack of education, this lack of awareness is, especially when you're a teenager, especially when you're younger, you're kind of just eating whatever you want. You know you're going out, you're drinking alcohol, you're taking two cups of coffee a day, so you're unknowingly contributing to your own pain.
Speaker 2:I'm not, you know, it could be problematic that I say that, but you know, diet is a huge, huge influence in, of course, into these symptoms. Of course, there's so many cases as well where, even if they do diet, they're still having these endoflares, and that's when they usually say, okay, maybe it's time for surgery. But a huge part of it is also what you put into your body, your lifestyle, and so that is why they cause these symptoms and this pain, this chronic inflammation.
Speaker 1:Yeah, let's just chronic inflammation. Yeah, let's dig into that a little bit deeper too, because I think that's important to punctuate that endometriosis, like you said, it's a systemic. It's more related to your immune system, right, and inflammation, than it is to your hormones. I think that or for me, you know, like over the years I've learned that it's not in. While somebody with endo may also have excess estrogen, it's not the excess estrogen that's causing the additional growth, it's this inflammation and that's why oftentimes, digestive problems like so closely correlate with endo. Right, you happen to know not to ask you for a random stat, but like, how often is it that somebody with endo also has a digestive problem? Is that like basically 100 of the time, or is it more hit and miss than that?
Speaker 2:it's. It's not 100 of the time, but it's definitely more than half of the time. Um, and then it's also we're more prone to develop any type of autoimmune disease in the future as well if we don't take care of it. But a lot of the reason why these digestive issues happen is also because endo can also be grown in your intestines, in your rectum, and so these also. Actually a lot of women are very women are misdiagnosed with IBS when they really actually have endometriosis. So these symptoms are very, very similar, interesting.
Speaker 2:So they could have both, but sometimes endo is missed, just to make sure I hear you right.
Speaker 1:Okay, got you.
Speaker 2:Or sometimes it's not IBS, but it's actually endo, okay, I see.
Speaker 1:Or sometimes it's not IBS, but it's actually endo. Okay, I see. So what is something? Maybe a listener is like oh yeah, I just recently found out that I have endo. All of this sounds familiar to me, but what are some things that she can consider doing implementing or, I guess, not doing to help mitigate that inflammation? Is there any? What are the top of mind recommendations that that you go to and educate on?
Speaker 2:Immediately is to find a nutritionist, um, ideally, who is, you know, focused on hormones and even more who is focused on endo um, to be able, cause, you know, you can follow an anti-inflammatory diet, and that's you know. Second thing I would say is, like, look up up the anti-inflammatory diet, what it is generally like, what you can eat, um, but I think ideally is to be able to know which foods you're sensitive to. So that's like the first thing I would say. So I guess let me rewind the first thing would be to, uh, keep a journal of any foods, everything that you're eating in a day, and take no, and observe your body and see how it reacts to each food before taking, before changing your diet, just to see. And then I would go on and learn about what an anti-inflammatory diet is and see you know how similar or not are you eating to that diet. And then the third step would, be for sure, look up a nutritionist who is ideally focused on hormones and ideally focused on endometriosis, because you know something that works for me. An example could be like avocado, for example, which is a great food, but that could be working great for myself, but for some reason, another person could have a food sensitivity to that specific ingredient. So, which is why it's important to be able to have a plan that's fully aligned and personalized to you, which also goes with the supplements. So supplements are huge.
Speaker 2:When it comes to being an endo girlie, I take, you know, I always bring and travel with my supplement box, because I cannot go a day without taking mine, which is really important to mitigate inflammation, you know, help my body and support it, um, which is also goes hand in hand with finding a nutritionist.
Speaker 2:So they can, you know, do some blood work and understand what specific nutrients are you missing, so you can be supporting your body in that way, especially if you are, um, you know, prescribed to take birth control, which is something else that a lot of doctors don't tell you is like even if you're taking birth control, you still need to be on a certain diet, you still need to support your body with certain nutrients, because you do get depleted from some of them, and so be able to have that plan for yourself. That's, you know, you're going to have to follow for the rest of your life, which is the sad reality. So the you know, the more intention you're able to put in in into what you're eating, how your body reacts to it, and to be able to connect with your body, to understand, you know am I feeling more tired, am I feeling a little bit more anxious, am I feeling more bloated? To be able to know, like and understand your body and the things that it's telling you, because it talks to you every day, you know.
Speaker 1:Yeah, I love that you came back to that and that's something I like to talk about. You know, throughout other episodes too. Is this thing about this thing, this you know, ability to actually connect with your body and say, okay, before I actually start to make any changes, like, let me become aware of what is right now, what do I do, how do I feel, where am I at in my cycle? And then you have your good where am I at in my cycle? And then you have your good starting point for where you can grow and change from. You mentioned step one. Well, was it step one? One of the steps? Anyway? Right, getting familiar with what is your body sensitive to and becoming more familiar with that. I'm aware that gluten and dairy can be inflammatory, certainly for a lot of cows, a lot of people, and so those could be two things for a listener to take special note of. Nobody really likes to hear that.
Speaker 1:Right, that's a huge lifestyle shift, so that's certainly one to go into with an informed approach instead of just cutting a lot of foods out. Not knowing how to best replace it and also just how to have foods that you really enjoy eating and that you love eating. Yeah, yeah for sure. In addition to gluten and dairy, are there well and processed food right? Is there anything else that comes to mind specific to endometriosis that often causes that inflammation?
Speaker 2:Something that a lot of people do not like to hear is coffee, and it's not something that you know. It's not like don't ever stop drinking coffee. No, it's like you know you can enjoy your coffee still. But what definitely has shown is, like, at least the week before your period, try your best to like avoid it because it does bring up a lot of pms symptoms like and when I started, you know I started I went from drinking two cups of coffee a day to drinking four or five per month. Um, for a lot of reasons, because I personally in my body noticed the effects of coffee and you know, especially right before my period, like I was dealing with a lot of like PMDD type of stuff where I was extreme anxiety, extreme irritability, extreme breast soreness and extreme bloating and already cramping the week before. So that's something that I immediately saw, the changes.
Speaker 2:And the second thing would be definitely alcohol, and this applies to everybody, it doesn't apply just for endo people, but alcohol is a huge, huge thing where, as someone, when you stop drinking it and maybe you introduce it a few months later, you definitely notice how much it works against you and when it comes just going back to like the gluten and dairy, that's something. That which is why it's so important to do these exams and this blood work to see if you're actually even sensitive to it, because if you're not sensitive to it, you know, maybe like a high quality product that has dairy may not be so bad. But unfortunately in the U S, like I feel like we always have to be so aware of where we're getting our products from, because it's a whole typical thing. Where it's like in the U S, it wilts you, but then outside the U? S, you feel fine.
Speaker 2:You know, cause even my nutritionist told me that. She was like you know, well, when I was in Europe, like a two years ago, um, and I was having this, you know, via phone call, and she was like, well, cause you're not in the U S, I'll allow you, cause I am a little bit sensitive to it. She was like, you know, have maybe a pasta or pizza once a week, but if you were in the U S, I would ask you to completely cut it out.
Speaker 2:So, that was like oh okay, that's a huge proof of be very mindful of where you're getting your products from.
Speaker 1:Yeah, that's a really good point, and especially, or when I think of dairy too, because I was I just ate a plant-based diet for a couple of years a couple of years ago and you'd be surprised by all of the random stuff that has like milk powder in it.
Speaker 1:For some reason, and so yeah, I think that, like just to reemphasize what you said about, yes, alcohol, the best amount that you can consume is zero. That being said, like we're all adults and you know, we can make decisions about you know what, what we want to do. I certainly have a glass of wine or a drink once in a while, but I was saying that because, yes, alcohol is inflammatory. Caffeine can just put our blood sugar on a little roller coaster and that can really exacerbate or contribute to inflammation, and then focusing on a whole food diet is really going to be the way to go.
Speaker 1:Maybe it takes a little while to implement, though, for sure, for sure, for sure. It's not a switch that you can just flip. But okay, good to know some starting points, for if you have endo maybe you've just found out or you have suspicions then really focusing on how you can minimize inflammation in your digestive system, that's a good place to start start. I'm familiar with the fact that pelvic floor physical therapy can be good for endometriosis too. Right, finding somebody who can help do that manual, what's the way I want to say this. I mean, yes, manual, I guess, manipulation of the tissues to help break apart that scar tissue and the lesions. Any thoughts there or anything else that somebody with endo might want to consider in their treatment plan as they're doing research?
Speaker 2:Yeah, precisely, definitely something I just learned. I had the idea that everybody with endo needs pelvic floor therapy. According to my gynecologistologist, it's not necessarily the case. It's mainly for people who have um endo, that's infiltrating or touching your, your bladder, um anything that's, you know, affecting that. And when you have issues to pee, you know, or you're having issues to even like use the muscles of your pelvic floor to like contract your pee, or you're having a lot of pain, um, when you're peeing, that's ideally when to have pelvic floor therapy, especially if you go post-op, if you go through an endometriosis surgery, and especially if you have intestinal resection.
Speaker 2:I don't know how I say in English precisely, but basically, when they cut a part of your intestine because it's filled with endo, that's also a huge sign that you may need pelvic floor therapy.
Speaker 2:But I think in general, though, like as a patient myself, I would I mean, definitely I'm always going to listen to the doctor but I think it doesn't hurt to do a little bit of therapy.
Speaker 2:I think we all need it, especially if we want to go into labor, especially if we want to be moms at some point. I think it's a huge, huge beneficial thing to do, because you get to learn more about your also your muscles too, which is something that we don't really know, learn about like we don't really learn about the female anatomy as much as we should all the muscles that are involved in there and could also help mitigate a little bit of you know the cramps slightly. But I do understand, and I definitely am first-hand experience of how there's a lot of methods out there that I tried that just did not mitigate the pain at all for me, but that's obviously because I later found out that I had one of the most deep infiltrating stages of endo. So at that point surgery was kind of just my best and only option to be able to have a better quality life.
Speaker 1:Yeah, so that's a good differentiation point that yeah, if you have endo like cause, endo can spread or endo tissue can grow in your lungs. It can really grow anywhere in your body, right so good differentiation point to localize that I'm considered physical therapy. Since you brought up the surgical side of things, can you walk us through, like, how prevalent is that? Is that something that everybody with endo like must or, you know, kind of should do? Um, is that like, what's that process like and what's the benefit?
Speaker 2:Um, so not everybody with endo needs surgery, so that's a good news.
Speaker 1:I would say.
Speaker 2:The thing about surgery, though, which is very common, is because majority of people who end up being diagnosed with endo end up being diagnosed at such a later stage, at such an extreme stage, that they do need surgery. So the most ideal thing is that if you're diagnosed with endo and let's just say that you know your pain does go away with ibuprofen and it's not infiltrating any organ outside your pelvis like, for example, it's not infiltrating your intestine, it's not infiltrating your bladder, you know, if it's pretty minor and you're able to live with your symptoms, that's when maybe you don't need surgery and you can hold it off a little bit with diet, with exercise and maybe even hormonal treatment. At this point, it's hormonal treatment is the most common thing that doctors prescribe, probably even more than no, not probably, for sure, even more than the diet, because, again, a lot of doctors are not educated on endo at all, so they just go with what they learned, which is birth control. Here you go, and you know, let's just keep it frozen for a second.
Speaker 1:Yeah, yeah, let's dive into that a little bit more, and then we'll get back on the surgical train. But you're right, because, yeah, a lot of practitioners or by practitioners I mean doctors know that they can. By prescribing hormonal birth control, it sounds like, yes, it can help alleviate some of the symptoms, but it's a band-aid sort of approach. It's not really addressing what's going on, and most likely presumably at some point, you'll stop using hormonal birth control and still have this situation to take care of. I believe that sometimes, doctors will also prescribe progestin, right, or like a bioidentical progesterone, which can help to alleviate some symptoms. I'm not sure how common that is, though. Is that something like that seems to be quite common, or that a listener should ask their medical provider about?
Speaker 2:No, it's the most common thing to be prescribed a progesterone-dominant birth control to counteract the estrogen part, since the endofissue is reactive to it.
Speaker 1:Okay, sweet, and then okay, I just wanted to come back to that really quick. And then now, so tell me more about, yeah, going down the path to surgery and what that looks like, and at what point does that become the most relevant.
Speaker 2:Yeah. So essentially, just to cut it short, it's just the when you're basically not able to function, at that point, when absolutely ibuprofen is not even working for you, when it's really literally getting into in the way of your daily activities. That is when most likely, ideally, you would go into surgery. Because if there's, you know, if the birth control is also, because you know a lot of women go on birth control but you know, maybe it takes your pain away, but then it brings up all these other symptoms that you're miserable with, and so it's sometimes even women choose to go off it because they're like, well, I'm, I rather just, you know, maybe I find I ended up finding like a strong painkiller as, maybe, but I'd rather not deal with all this stuff.
Speaker 2:Um, but going back to the surgery, so that's basically when ideally it is, especially when, um, uh, a yes or yes, that you need surgery is when it starts touching what I was telling earlier other types of organs, like your intestine, for example, even if it's already just touching it and not infiltrating it, they don't let at least the gold standard in Latin America and Brazil well, Brazil isn't Latin America, but you know what I mean In Latin America is that if it's touching, even if it's just touching it, they have to go in and they do not let it invade more another type of organ, um, especially if, for example, you have, like the chocolate cyst.
Speaker 2:So that's something else that endo causes is chocolate cysts in your ovary, and this, obviously, um is affecting your a quality, your fertility, your ovulation quality, so that's why they have to go in as well to remove it. Um, and then after that, the post-op is a whole another world as well. So that's something else that people also would love, I would love to put on them to understand that well yeah, two follow-ups to that.
Speaker 1:Um, one, that would be great if you could talk more about chocolate sis also, I hate that they gave it the name chocolate sis. I decided that. And then the other question was um, how would they know if it's touching? Like, how would your doctor know if the endo lesions are about to encroach on another organ? Like, how do you find that out without going in and checking? Up the scene.
Speaker 2:Yeah, so first step is to understand your symptoms. So, which is why it's important for doctors to get educated on this and be able to really dive into detail to the patient's symptoms, because usually the symptoms are a sign of where it is. So, for example, if someone which is rare, but it happened had endos, lesions in their shoulder, usually they'll get shoulder pain during or right before their period. Sometimes it's also been found in the molar and that lesion tissue will actually bleed at the same time you're having your period. But more commonly, if you're having say if you had, an endo in your intestine and your rectum, huge number one thing is extreme pain while you're pooping on your period and that diarrhea, while you're pooping on your period and that diarrhea, um, so are their main signs?
Speaker 2:Um, and what they do in latin america is they. You undergo an mri scan, um, which is basically mainly focusing your pelvic area, um, and they, that's when they're able to see. When it's read by a expert in endo radiologists, they're able to see um, okay, hey, your have your intestine is being infiltrated. They also are able to see a little bit how deep it is or not and see also especially in, like your bladder when you have. You know you're not able to hold your pee. You have pain while peeing.
Speaker 2:Those are signs. Pain is, unfortunately, probably the number one sign of that you might be having it in that certain organ.
Speaker 1:Okay, all right, super helpful. And then maybe it would be helpful for us to just differentiate between, like, the difference between, endo pain and period pain is like that it changes your ability to live your life, right? Yes, it shouldn't. You know. You take, yeah, ibuprofen or use a hot water bottle and you're good to go, right. Maybe there's this second level, on top of that, where you have a lot of pain because somebody might have a lot of inflammation and that can still occur without it being endo. But if this is something that really impacts your ability to live your life, then a really great signal that you should seek a little bit more guidance.
Speaker 2:On that note too.
Speaker 1:is there a so maybe a listener has you know is trying to find the right provider for them. Does there happen to be a database or something with you know medical providers who are like on top of their endo game? Do you have any tips like that? Or is it really just finding local Facebook groups and getting recommendations that way?
Speaker 2:Honestly, the Facebook groups really help and at some point they help more than the actual practitioners themselves. But there is one platform called I Care Better, which I learned from one of the doctors in Mexico that you know. That's where you can find maybe a I want to say specialized, because it's something else, a misconception. So there's no such thing as like being specialized in endo. There's an endo expert because as of now, there's no specialization in endometriosis that exists in the medical field, so it's only gynecologists that get their expertise, get certifications and all these things in endo. So on the platform I care better that you can find an expert in endo and ideally also something else. Not every gynecologist is an expert in endo, so it's something very important to point out, especially if that gynecologist wants to do surgery on you. Huge red flag and run away from that. Do not undergo surgery.
Speaker 2:Do not undergo surgery if that person is not certified it's not an expert in it, because it's a very, very complex surgery and you can actually be doing more damage than good by undergoing surgery by someone who does not have the expertise in removing those lesions.
Speaker 1:Okay, good to know. Also a good, maybe just reminder to somebody who's listening that you can dump your doctor if you don't like them for any number of reasons. Maybe they're suggesting something that you feel uneasy about, but I think that it's easy for me, too right To stay with a doctor that I'm like. I know that this person doesn't really listen to my concerns, or maybe we just have a different approach to health.
Speaker 1:But anyway, I'll my, just I'll get off my soapbox about like feel free to dump your doctor and find somebody who works better. You can fire them.
Speaker 2:Yeah, you have every right to search for a second opinion or a third opinion, or even a fourth, if that is. If that is the case, you have every right to do that, because no one else will advocate for you better than you.
Speaker 1:How many women and I'm just thinking about like right there's a whole community of women who can support you, you listener, if you are finding out that you have endometriosis and want some support. But how common is endometriosis amongst the population?
Speaker 2:As of now, it's one in 10, but that is an estimated number which is about about 200 million women. But what they're finding in Mexico as well is that it is definitely more than that. In Australia, I think it was two in ten or one in nine, um, and I think it was in Brazil where it was like one in five. So it's definitely much more than one in ten, but it's just the most. You know, the easiest number that they were able to give us. And, for example, in 10, but it's just the most, you know, the easiest number that they were able to give us. And, for example, in countries like Mexico, there's no research, there's no literacy on specifically like Mexican women. But yeah, it's a lot more common than we think. Really, I'm pretty sure we all know at least one person that has endo.
Speaker 1:It's actually as common as diabetes.
Speaker 1:Oh, that is really interesting, interesting yeah, I can think of nearly not as researched, yeah yeah, that is the tough part about what all things related to women's health, where you know it's like underreported, understudied, um. But yeah, conversations like this and the information that you share in advocacy that you do helps people to become more aware and better able to advocate for themselves. Another thing I wanted to touch on oh yeah, so coming back to ye olde chocolate sis and also thinking about fertility right, it's certainly not the case that if you have endo, you will not be procreating in the future, right, but can you just talk about when those concerns do come up, like where does that originate, what's going on, and go from there?
Speaker 2:Yeah, to start off. So it turns out that about 50% of the cases of infertility are due to endo, and that's again main reason because of the time it took that person to get diagnosed and therefore the time it took that person to receive treatment to improve their quality of fertility. So when you undergo surgery and this is why it's important to also have an understanding of, like, the diagnosis process, the pre-op process, the surgery and the post-op and the post-op is very important because it's going to be something that you know, it's a follow-up to understand what's going on in your body, especially if you want to have kids. So when you undergo surgery, the next ideal thing to do is to search for a gynecologist who is specialized in fertility and ideally but there are very little amounts of them in the US and the world Ideally also someone that has an understanding of what endometriosis is, so then they could read your report, your surgical report, and see where did you have endo, because this where is also very important for them to understand. How is it going to affect your fertility? Because if it was in your fallopian tube, that's already affecting the way the sperm goes in and finds your egg. If it was, if you had a chocolate cyst in your ovary that's already going to affect your quality of eggs and so after that you have to do an egg count to understand how your egg count is. Is it low, is it high? Is it okay Like, where are you at, to then start that journey of your fertility?
Speaker 2:For me, in my case, I don't want to have kids right now. So they obviously suggested birth control. You know, because you kind of have like a clean start when you have endosurgery, so the most ideal thing is to like kind of protect that at all costs basically. So they're most likely going to want to put you on birth control, but definitely ideally it's always the anti-inflammatory diet to be able to just avoid as much as you can the regrowth of endo, which goes into my next point of getting a six-month follow-up and another MRI scan done to see if there's any type of regrowth, if you're getting any symptoms again. But ideally anybody who has endo you should be getting an MRI scan at least once a year to understand is it growing? How fast is it growing? How are you doing?
Speaker 1:Yeah, okay, so correct me if I'm wrong, but it sounds like the problem or the potential problem is not a hormonal one, right? This is another differentiator to indicate that endometriosis isn't a problem of hormones, but it's actually a structural problem, like the scar tissue and lesions on the ovaries could impact negatively ovulation, or on the fallopian tubes, like it could just obstruct the path for the egg to go down. Does it also so? I'm thinking, if there's endometriosis like lesions on or around the uterus preventing or otherwise impacting implantation, if the egg doesn't make it all the way there, is that another part of it too?
Speaker 2:that would. That's when you go into more adenomyosis, which is kind of like a sister of endo. So adenomyosis is the one affecting, like, the walls of the uterus, which makes it grow thicker, which therefore, you know, affects the implantation process, but the endo itself is going to affect mainly the fallopian tube, the ovaries, um, and obviously, especially if, like you may like, the outside of the uterus. If the uterus is being attached to your bladder, it's being attached to your rectum.
Speaker 2:That's definitely gonna like you were saying a structural thing, because something else another misconception is that every woman with endo has high levels of estrogen. And that's not true. Not every woman, um, with endo has high levels of estrogen. Could even be the opposite you probably have low levels of estrogen, etc. Um, so it's definitely like a like a, like a. Your organs are basically essentially being damaged by this tissue, like it's just grabbing onto everything and it's growing on in your body and it's kind of just, you know, deforming your anatomy, in a way, your female reproductive anatomy. It's just putting it completely out of place where, obviously, for you know, fertility like it's just not a good home for this egg to live in and to grow.
Speaker 1:Yeah, can you talk about what is going on in Brazil that you mentioned, like what are the innovations that they are making and and how are things changing based on what's going on there?
Speaker 2:yeah, so, uh, as I mentioned before, so it's brazil and italy that are the ones that are really leading the research, but brazil itself they have truly amazing qualified trained doctors. One of them is his name is dr william condo, which anybody who's listening if you have the opportunity to travel to bra, go ahead and do that. I highly recommend that. But he's one of the yeah, he's one of the you know teachers in Mexico that is currently also teaching other doctors how to do surgeries, and his expertise is surgeries. He's a surgeon, and one of the things that they are trying to expand to the world is also what we were talking about before that you don't need surgery to be diagnosed, because one thing is that diagnosis is a very invasive, invasive process, and so they're trying to really reduce that invasiveness to each patient. So, therefore, you know, an MRI, an intravaginal ultrasound, is their way to go, and to be able to also understand and use that mapping of your endo. So they're training radiologists, they're training nutritionists, they're training surgeons to to know how to do this method of removing these lesions.
Speaker 2:Someone else is Dr Jordana Diniz, which she's also an amazing doctor herself, and she, specifically, is focusing on robotic surgery. So, using the DaVinci robot, which she is really advocating for it, that it's a better option for patients if they're willing to undergo it, because it leaves you with less scars, you know, for like, more aesthetic purposes. They're also able to recover faster when using the robot. So she's a trained surgeon in that when using the robot. So she's a trained surgeon in that. So, yeah, they're really just doing an amazing job in doing the post-op follow-up as well, which is a really big issue currently in endo patients that you get surgery and then you're kind of just left in the dark to figure it out on your own. Like there's no guidance really in okay, what are the next steps? Okay, I got surgery. Now what? Like there's not really that much information. Like there's barely information on endo itself. There's barely any information on treatment and yet alone there's barely any information on life after surgery, which is as equally important as everything else.
Speaker 1:One thought and then I'll ask you if you have, if there are any particular resources that you recommend and if somebody listening who wants to learn more should check into. But really quick, I just wanted to come back to cover. I don't think we really clarified what actually happens in the surgery. So if somebody who has endo goes to have surgery to have it remediated, really what's happening is it's a laparoscopic surgery, right?
Speaker 1:So it's like you know, like relatively small incision, but going in to remove as much of the scar tissue as possible. So I guess I don't know if they're like literally scraping it, but anyway like at least in my mind metaphorically scraping those lesions and that endometrial tissue out, because of course that's what's causing the pain and inflammation. Did I get all that right, or is there anything else to add there?
Speaker 2:Yeah, like the best metaphor that they've used is basically like a plant, and that plant has like a root, and so what they do in excision surgery is that they'll go into the root of the plant and cut it out and remove it, and that includes also in your nerves as well. So, which is why it's very important for these doctors to be very trained, because this tissue, a lot of the times, is also covering your nerves, and so for a doctor to be able to go in, remove this tissue without damaging your nerves takes a very, very high, skilled person to do that, especially with your, with your intestine. So if you have it in your intestine, depends the degree if it's already infiltrating they'll they will cut that part and staple your intestine back together. I'm sorry, it's like probably very gruesome, um, but uh, the incision itself is really not that big, thankfully, because technology is advancing. It's about four incisions, pretty small, about even, you know, maybe like five centimeters.
Speaker 2:So, yeah, very small one is in your belly button and they use a camera with I don't even know what these things are called, like those handles, robotic hands or something, um, and that's what they'll go in and do. So they'll just cut everything out as you were saying um and something else, that red flag, if they want to do ablation, that's literally just burning it off. So that's basically just burning off the top of the plant, but you're not. You're leaving the root in there. So you're basically not really doing much because since you leave the root, it's still going to continue to grow. So it's a big difference between ablation surgery and excision surgery, and excision surgery is the gold standard of endo removal.
Speaker 1:Okay, thanks for clarifying that I didn't know that myself. So excision yes, ablation no thanks. What are some resources? Are there any books, authors, I don't know blogs, anything that you really recommend for somebody who's learning about endo to go check out?
Speaker 2:Yeah, I think one book I always come back to is called a better period food solution. Um, and I think her first name is Tracy, I think Lockwood or something like that. I'm not really sure, don't quote me on that, but the title is correct. Um, but that is more than a book. It's really like a manual, like a guide, and she'll go into each chapter and divide it by, by symptoms, by even PCOS. It doesn't necessarily just end endo, but she has a full chapter on endo and she breaks down everything you need in terms of nutrients and why. Like what does what does this do? Because we know we'll be taking stuff. But then you don't really understand. Like why do I need this? Like, why do I need omega? Like why do I need magnesium?
Speaker 2:like all this stuff and that's personally what I loved, that now I understand, like, how is this really functioning in my body? Um, and honestly, just a lot of. There's a lot of great accounts like endo, what, and I mean just finished in America, um, and local money out, anybody who's? If there's anybody in Latin America here, um, also endometriosis m, she's, uh, I guess, an endo influencer, if you want to call it that um, one of the, I think one of the probably the most followed, I would say, and she just gives great, great content on even, like, mobile mobility aids, on if you, you know, don't be afraid to use them, cause I for sure wish I had a cane back in the day when I was going through my extreme um periods. So it's also something like that where, you know, she uses the term dynamic disability, which is like, on one days you'll be feeling fine, especially if you're ovulating in your follicular phase, but then there are days during your period where you're completely, just, you know, unable to move, literally.
Speaker 1:Yeah, that's really interesting. Yeah, thanks for sharing those resources. Would you share with us a little bit about, like how, when you are spreading the word and educating about endo, like what do you do? What do you focus on? How can we, or any listeners, support you in getting the?
Speaker 2:word out, yeah, yeah. So I definitely. I can talk about endo all day, I would say, unfortunately, but I like to really really focus on the diet. You know, going back to, you know birth control, how it's really just a bandaid thing and you know, and it goes back to also reconnecting with your body, which is something that I think a lot of us in general, but especially women with any reproductive issue, you kind of really learn and adopt this idea that you hate your body, you hate being a woman. I surely, as I did that a long time, I kind of resented my, my uterus because of all the pain that it brought me. So I really try to focus on reconnecting myself with that part of me, reconnecting with my reproductive health and how to hug yourself and embrace this life that you were given, regardless of this chronic condition. So that's something that I like to focus on.
Speaker 2:A lot is really having a more lighter feel rather than focusing only on the suffering suffering, even though I know it's a very difficult thing to live with. But there is, like I think, the tunnel. There are ways to mitigate it. It doesn't just have to be with birth control, it doesn't just have to be so isolating and that's such a huge thing that we grow up dealing with is like we don't really talk about it, especially in Latin community. It's such a taboo like we don't talk about periods with our daughters. We don't really talk about it, especially in my own community. It's such a taboo Like we don't talk about periods with our daughters. We don't talk about periods with anybody outside of yourself.
Speaker 2:But this is hurting us more than it's doing any good, you know, and this is leaving us isolated. It's so lonely. So that's why I wanted to build a community where we're able to share resources, we're able to share anything that helped us in our journey that I can maybe help someone else. And I just get a lot of feedback that you know women that have gone through surgery. They're like I'm finding more answers here than I am from my doctor or I'm finding more support here than I am from a medical professional, you know. So that's the most important thing is to, you know, have a place where people understand you. They know exactly what you're going through, because sometimes in your family won't be able to understand. You know it's not their fault, um, but it can feel frustrating and and very lonesome if you don't have a community that hears you out and supports you.
Speaker 1:Yeah, it's such a good source of strength and support, for sure To have your, your people, around you.
Speaker 2:Yeah.
Speaker 1:Yeah, yeah. So how can listeners connect with you?
Speaker 2:Oh, yeah, um, I'm on Instagram, I'm on TikTok, trying to start on YouTube, um, but I just uploaded um a talk with a gynecologist all about endo. Um, I am mainly in Spanish, but I'm trying to shift more into also doing content on English in English. But regardless, um, you can always shoot me a DMm if you want any of the resources I currently have. Uh, you know, a very basic guide to the anti-inflammatory diet, kind of the first steps post diagnosis with endo and adenomyosis. I also do have an excel with um any endo experts in latin america, but I'm building it now to be able to have it more in the us as well. Um, so, yeah, so, if you are interested in any of those, if you don't speak Spanish, no worries, you can shoot me a DM and I'll gladly send you the translated version for you to have. Yeah, perfect, um, yeah, my username is also, uh, cuerpo curativo. Um, and yeah, TikTok, instagram.
Speaker 1:Any final thoughts, like anything that we didn't touch on, that you want to leave us with or other like final message you want to leave the gang with.
Speaker 2:Yeah, I would say, don't, you know, don't delay going to the gyno if you are feeling any type of symptom, and even if you're not like you never know it's always a great time. This is something that we also thought like, oh, go to the gyno when you have sex for the first time. Also thought like, oh, go to the gyno when you have sex for the first time. And no, like, ideally you should go before, especially if you or you have a daughter or you have a little cousin that you see they're struggling a lot with their periods. Go to the gyno right away. Um to be, you know, ideally it's just the more, the earlier you know we can get a diagnosis, we can catch this, the better it will be for the future and, you know, just, better quality of life in general. So it's never too late to go to the gyno and it's never too early, I would say. Obviously, as soon as you start getting your period, I would say just go to the gyno.
Speaker 1:And Duaney, thank you so much for spending time with me today and talking through all things endometriosis. I'm sure the listener took away a lot from this, and I've got your socials and your newsletter all linked up in the show notes so they can connect with you more there. So thank you again, and thank you listener, who has made it all the way to the end here. I know this one was a little bit longer than my normal episode, but I hope you found a lot of benefit in it. If you did, I would be super appreciative if you would take just a quick second to rate and review the podcast. Or if you know somebody who is working through an endo diagnosis or questions around endo and you would share this episode with them, that would be amazing. Alrighty, have a good week and I will see you in the next one.