Dive headfirst into the complex world of hormone replacement therapy in this part 2 episode with Kate Boyce, of Endo Girls Blog as we strip away the one-size-fits-all approach to HRT for conditions like endometriosis and adenomyosis. This discussion isn't about blanket solutions; instead, it's a deep exploration into the personalized nature of treatment, from the role of progesterone to the surprising impact of testosterone. We're challenging the status quo and simplifying the process to focus on what really matters – your unique health journey.
Navigating the minefield of hormone balance and the risks of HRT can be daunting, but we're here to guide you through it with the latest insights and research. We'll tackle the body's remarkable but complex survival mechanisms and the importance of symptom-based treatment adjustments. And let's not shy away from the controversies and risks – knowledge is power, and we're empowering you to partner with healthcare providers who truly understand your needs.
We round up the discussion by addressing the broader health implications of HRT, such as the potential link to dementia prevention, and dissect the ongoing debates within the medical community. By sharing personal anecdotes and critically analyzing the research, we're cutting through the noise to bring you evidence-based, accessible information. This episode is more than just a discussion; it's a call to action for informed consent, education, and advocacy in the evolving field of women's health. Join us for an episode that is as thought-provoking as it is informative, with the goal of bringing you to the forefront of your health decisions.
https://endogirlblog.com/
Website endobattery.com
Dive headfirst into the complex world of hormone replacement therapy in this part 2 episode with Kate Boyce, of Endo Girls Blog as we strip away the one-size-fits-all approach to HRT for conditions like endometriosis and adenomyosis. This discussion isn't about blanket solutions; instead, it's a deep exploration into the personalized nature of treatment, from the role of progesterone to the surprising impact of testosterone. We're challenging the status quo and simplifying the process to focus on what really matters – your unique health journey.
Navigating the minefield of hormone balance and the risks of HRT can be daunting, but we're here to guide you through it with the latest insights and research. We'll tackle the body's remarkable but complex survival mechanisms and the importance of symptom-based treatment adjustments. And let's not shy away from the controversies and risks – knowledge is power, and we're empowering you to partner with healthcare providers who truly understand your needs.
We round up the discussion by addressing the broader health implications of HRT, such as the potential link to dementia prevention, and dissect the ongoing debates within the medical community. By sharing personal anecdotes and critically analyzing the research, we're cutting through the noise to bring you evidence-based, accessible information. This episode is more than just a discussion; it's a call to action for informed consent, education, and advocacy in the evolving field of women's health. Join us for an episode that is as thought-provoking as it is informative, with the goal of bringing you to the forefront of your health decisions.
https://endogirlblog.com/
Website endobattery.com
Welcome to Indobattery, 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, elana, 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 Kate Poisoni from Indogirl blog at the table as we continue our discussion on hormones. This is where we left off and where we're going. The other seed of this is that the progesterone. We've talked about this. You're not a progesterone person, but then there's other people in the progesterone camp who find significant benefits for them and how they feel. What are your thoughts on that? Like with any of them.
Speaker 2:I'd see that as well. People who are like well, I feel so much better on the progesterone. But I will say that typically changes once they get their testosterone levels right. From a non-clinical perspective here, just as a patient advocate perspective and working through that typically it's like oh, the progesterone was good enough to help me sleep, or a good enough to help with anxiety, but oh, magically that anxiety went away when my testosterone levels got better. Oh, everything else calmed down when my testosterone levels got better. This isn't really that uncommon because you'll see that a lot of providers, once you've had a hysterectomy, they won't even prescribe progesterone with hormone replacement therapy. It seems to be only pushed by. The wellness space or the holistic places are the only ones that ever seem to be pushing the progesterone. That's because way back in the day I don't know if you remember this book it was like what your Doctor Won't Tell you About Minipause. I don't know if you remember that.
Speaker 2:My mom had bought that in the 90s it was this provider that pushed progesterone cream. Everybody in the wellness space just clung to that. It has stuck as this. Progesterone's like this woman hormone that's needed for rest and calmness and sleep, whatever, like estrogen. We don't continue to make it forever.
Speaker 2:Progesterone's genuine. Its primary purpose really does have to do with pregnancy. It's one that, like, I don't want to say it doesn't have a role, but it's the one that I see people ever need the least. But it's the most accessible because it's pushed the most, especially in the wellness space and it's so easy to access. It seems to be the most popular, and then people will see maybe a couple benefits and be like, oh, that's it, that was good, that's what I needed and that's fine if that's where they want to stay.
Speaker 2:But I also let people know that, since there are side effects with progesterone that seem to be pretty intense for a lot of people the inability to lose some way, a lot of water retention, too sleepy it just for me too, like I cannot stay on progesterone and it actually does interact with our androgen receptors and so a lot of the time, once you know someone gets their hormones figured out with estrogen and testosterone, they'll come off the progesterone, they're like okay, I didn't even need that. That's just kind of how I feel with it, and especially working with providers who don't even utilize it if there's already been a hysterectomy. Of course, if someone has a uterus, they absolutely have to be on it if they're on estrogen.
Speaker 2:There's no question, right the, you have to induce a period, you have to shed the lining of the uterus, otherwise you risk endometrial hyperplasia, which can then lead to, you know, endometrial cancer. So I definitely get scared when I see people who are like well, I'm on estrogen, but I won't take progesterone and I haven't had a hysterectomy, oh God please just go to any doctor Any doctor.
Speaker 1:Go to the ER now.
Speaker 2:Please do not do that. And that part is scary. But when it comes to you know you've already had the hysterectomy it's like it gets once again. It's nuanced If somebody wants to be on it and it's not expensive whatever. But if someone's going to some pricey wellness coach that's putting them on a progesterone cream, that's when I, like raise the eyebrow, you know, as their advocate, cause I'm like, okay, well, let's take a better look at this, let's take a step back, right. That is just often the case that I see with the testosterone.
Speaker 2:Once the testosterone gets leveled out, right with estrogen, I see a lot of these patients I work with being like, okay, I'm coming off the progesterone. I feel like the consensus with us is let's be on the least amount of stuff possible, right. Same with supplements right. I just was like I want off so tired. Same. Like what can I want to be on the least amount of everything? So okay.
Speaker 2:Fortunately, I get 80 to 100 milligrams, depending on levels of testosterone pellet every 12 to 13 weeks and that's like a set it and forget it, which is great, you know, yeah. And then everything else. I try to just keep really simple, because once I got that level right, I was able to get rid of the skin care stuff right for my burning skin care, the hair care stuff, the supplements for that I'm really big on. Let's make it more simple rather than I feel like a lot of these med spas or scammy places or wellness coaches. They just overcomplicate, it's like they just throw more at you. We got to owe you this. We got to fix this. We got to throw it at this and this and this.
Speaker 1:Right, and I do think there's a reason why you don't want to overdo it because they're still reacting in your body. They're still doing something, otherwise they wouldn't be telling you to take something, so the reaction is still very much there. So I'm a person that is, I don't do supplements, and I know some people will like roll their eyes at me, oh my gosh. But here's the thing I don't have good kidneys. First of all, I can't process all that extra.
Speaker 1:You know and I think that we have to take that in consideration how is our body processing all of this? It's not a harmless supplement. When you're doing that, it's not a harmless whatever. Do it with intention. But also, when you go to get hormones or look at your hormone replacement therapies, make sure that you provide information to your provider that you're on these supplements, because they can react negatively if you are taking something that maybe would react to that, even skincare products can.
Speaker 2:So if you're not, maybe you bought something that is like I don't know. I know people will buy things that are like cellulite reduction creams or whatever. Right, so even something that simple, because testosterone relies on oil to get into the bloodstream through the skin. If you're putting something on your skin that could be creating an additional barrier, you're going to be wasting money. You're not getting all of that cream Isn't getting absorbed into creating testosterone in your body, right? So it's just so many small variables that people don't consider.
Speaker 2:They'll be like well, this isn't working, or I'm having this reaction, and I meet people all the time who haven't just taken a step back and looked at all of the details of what they're taking. People don't get their supplements. They dislike the consider part of their diet rather than when someone's like can you list off what you're taking? And I learned the hard way. Zinc actually can metabolize testosterone faster and I was taking a ton of zinc Interesting, so OK, well, let's not do that. I also learned that zinc can lead to anemia, and that's another thing. There's just so many facets to this that get really out of control when we just start to take supplements and people will say, well, but it was through my coach, it was through my naturopath and I'm like I still always suggest, at least at the very least, talk with a pharmacist, because they're going to know a lot more.
Speaker 2:They'll know more than your doctor. They'll know more than that holistic coach. If you get prescribed something, just say hey, because they'll ask when you go pick up a drug, do you want to do a consult with a pharmacist? You could say yeah and be like I'm taking these. Do you know of any interactions or resources where I can look into this some more? And it's really important because a lot of people end up having they'll be like, oh, I'm having this new symptom, or they'll think it's something unrelated, and it really just boils down to they have two things that are interacting.
Speaker 1:Right, and I feel like that's something that we have to be aware of all the time. When any medication, any supplement, you have to know what you're putting in your body and how it's going to respond and play nice with other things that you're putting in your body. And there's something that I think that we do need to be aware of as well. So, because I've had an ophrectomy bilaterally, which means both ovaries are gone, I cannot produce more of something that I'm not producing at all. So I know a lot of people will say, take this supplement or try natural yams and that's going to increase your testosterone. I don't have a hormone factory, I don't got it, so I can't produce something more if I am not producing it.
Speaker 2:Right, you have to have those building blocks, and there is some to be said, for there are tissues throughout the body that have the capacity for synthesizing the hormones, but they typically act locally or they're not enough to raise the blood levels. So, yes, testosterone is made in other parts of the body. Clearly for me, in a lot of us we still need to supplement with it. Right, right, estrogen can be made in a lot of tissues. That doesn't mean that your adipose tissue, which is fat, is going to be able to make enough estrogen to make your hot flashes go away. Right, because with fat it's funny to me, because with fat mentality it's like, ok, well, just get fat, because fat makes a lot of estrogen. So I guess a natural way to increase your estrogen levels is to get really, really fat.
Speaker 2:Just increase that adipose tissue and yeah it'll be great.
Speaker 2:It'll be great, whatever you want to do. So I mean, I just think that's how my brain gets when it comes to this stuff. I look at the biochemistry of it, and that's why testosterone is really interesting in that way, because it's only made in a specific part of the ovary and it has a completely different method of interacting in the body than estrogen does. Right, and so that's another thing to keep in mind. Right, it's not OK. Testosterone and estrogen are made in the ovaries. Well, they are, but they're made in different cells and they're made in different ways. And everyone knows I feel like a lot of people know testosterone can convert into estrogen.
Speaker 2:Yes, and so that's another thing, people are like oh, we got to be careful because your estrogen levels arise. I will tell you that in the four years we've been tracking my hormone levels as long as my dosing is right with my pellet I've never once had elevated estrogen levels. And I know estrogen fluctuates significantly so it can be really hard to determine what is even a normal estrogen level. But we've tracked mine so closely for four years that we know where I'm at. The only time my estrogen is ever spiked is when my testosterone plummets.
Speaker 2:It's like, oh my god, it's like my ovary is over-correcting. It's very bizarre. And then my ovary hurts. When my testosterone levels are higher, my estrogen levels are super chill and my ovary never hurts and it's like calm down. But those reactions do happen, right Like there is a constant flow with how the body is making hormones and it can do backward reactions and it can do forward reactions. And we've got three types of estrogen right, when you take hormone replacement therapy, you're only on one of those types, but that's OK because we do make the other types of estrogen as well.
Speaker 1:Interesting. See, these are things that we need to talk more about because it's not Simple, but I think the more we understand it, the better we can advocate for our care.
Speaker 2:Yes, and I even speak with a this is brilliant woman that speaks with me. She's a molecular biologist PhD. Her and I get into this. Her and I both go through literature. We're like, okay, so let's look at this type of estrogen and like someone will be like, well, I don't have any free testosterone or total testosterone, but I'm having all these high testosterone symptoms and it's like, well, there's actually a pathway where a progesterone can turn into something called DHT, which is stronger than testosterone. It's just like the biochemical pathways, and that's my education is in biochemistry, right, so I'm always looking at these pathways and how can they be happening?
Speaker 2:And the body the first thing we learn in biochemistry is that the body is a survival machine and it will find a way. So it will create, however, the pathways it needs to create to get to what it wants as it's in goal. Sometimes that doesn't mean good for us. Sometimes that just means survival for the body. So you get into these situations where it's like, okay, you're not having enough testosterone, but it's making DHT. But that's not good because that causes a lot of those like the PCOS type of care growth and whatnot.
Speaker 2:So and I think that's what people intend when they say hormone balancing. I think that's what they mean, because they'll say we'll have one camp that's like you gotta balance your hormones, so the other camp that's like you can't balance hormones because they're always fluctuating. But I think the middle ground is hey, how do we give your body the right building blocks so the body can do its natural balancing act? We're not gonna be able to do it. We're not gonna be able to tell it what to do. Necessarily which is another thing I laugh about when people are like let's detox your estrogen through your liver and it's gotta go this pathway, I'm like you are never going to be able to control it that way. That would be like the most precise medicine that we're not there yet with.
Speaker 2:We can just give it what it needs to hopefully promote it to go the right way. And so that's really important with what's happening when we're giving it these building blocks. And, like you were saying, if you don't have the building blocks they're not gonna happen anyway. So sometimes you just gotta get it, however you can, and then go from there.
Speaker 1:I like to think of it. I was talking to a friend of mine the other day about this with you know, balance is very ambiguous when we're talking hormones, right? So I like to think of like the lines of like the different hormones in between a bracket. Where is your balance? Like, where are you gonna thrive the most and feel the best? If one is way over here and the other is over here, you're not. There's no middle ground. You're gonna feel awful either way. But if you have those markers of what is your balance and where you thrive and where your body is not in survival mode anymore, that's your balance, as long as it's not swinging one direction or another to create long-term bad effects.
Speaker 2:It should be long-term and that's. You know, in defense of a lot of the you know what you would call like more like traditional doctors. In their defense, they're right when they say there's just no good way to know. Right, there is a good way to know, but it requires a lot of time and effort. For me, with the amount of data I have on my body over four years, I understand like that is a massive privilege, but I do my best to utilize that as like an example. Right, right Doctor can say, well, you'll never know your estrogen levels. It varies too much. You'll never know this and I'm gonna know that we just can't get it with one snapshot. They're right, you can't.
Speaker 2:But if you find the right provider and I always think one of the green flags defining a good provider is them wanting to be your partner and you know, not just rolling over every time you say, well, I want this, but then you know having a collaboration there, like, hey, I'm really curious. Do you think we can test this right now, which my provider's always done for me, cause I've been, like you know, I feel really off. I'm really curious to know where am I at like right now. It also helps that I have access to a lab that will give me my results within like 12 hours, yeah, which I know is really unheard of in a lot of places and so sometimes within like eight. So I've got this data where I was telling you, like I can see, you know we're testing. Testosterone plummets down, estrogen skyrockets. Well, why would that happen, right? Everyone's like well, testosterone makes it turns into estrogen.
Speaker 2:It's like, well, clearly, my body is using what it can you know, and it's I don't have a reserve and it's just turning into estrogen, whatever, but it's being able to collect that data, to find out where you feel best. Bye, because that data is hard to collect. I think that the best providers and clinicians that I've met are typically ones that say we're going to just do everything based on how you feel. That is good enough, honestly, because someone may get their test off, surrounded in a way that I think is inferior, but then they get lab work that shows good and their symptoms are resolved and they feel amazing. That's, honestly, what matters. At the end of the day, the good providers they will say that we just go based on symptoms, we adjust dose based on symptoms.
Speaker 2:As long as the rest of your health comes back as fine, go in for your physical and nothing else is out of line. Your lip profile is good and everything's healthy. A doctor may know a couple of people who've provided has been like your testosterone is too high. It's not, it's literally like 90. They're like well, that's way too high. They're like but this I feel so good and they're not having side effects. It's like why are they enforcing their belief Based?
Speaker 1:on no data right, there's no clinical data.
Speaker 2:It's based on just this idea that they've stuck to. It's frustrating Really. It's like we have to find a provider that is just willing to work in a collaborative nature and willing to go based on how we feel.
Speaker 1:What are some of the things that we should be aware of? In doing hormone replacement therapies? Are there risks involved that we need to be looking at now, but even long term.
Speaker 2:I think when it comes to the long term data, what we have currently is based on that women's health initiative, which is incredibly flawed. Everyone knows it's flawed. At least now it's publicly known and everyone's like okay, ignore it, because it was based on conjugated estrogens that we don't even use anymore. Well, I guess some people out there may still use permarin, but the long term data is slowly coming out better on that. I think it's safe to say that going off clinical guidelines for estrogen use is pretty solid at this point. You can go to the North American Menopause Society and see a consensus statement from them. I would say, for the most part, staying away from anything too fringe I say that a lot but anything that's too radical. Maybe try to find the middle ground on that, because I know again there's a lot of fear mongering with estrogen replacement therapy. But let's look at the other side of that coin as well the dangers of losing estrogen. I think it should resound even more in the endometriosis community. Just because we know what happens when we're put on or ELISA or Lupron, we know firsthand what happens when we deplete the estrogen. I think we know what happens long term. I think that when it comes to estrogen. It's a lot easier now to find that data. When it comes to what to look for with testosterone, that's a lot harder, right.
Speaker 2:I feel like the best way to navigate that is, honestly, just if you're accessing a pellet, make sure that it's not super expensive. I will say I think mine breaks down to $25 a week. That's so bad? No, it's not. That includes the visit. The doctor is not covered in network, so my office visit is $60. Then the pellet itself may be like $180, $200. It can go up depending on how much more milligram I get put in. Then you can extend it between 12 and 14 weeks. But when I've met people who will go and they'll say like $500 for a console and then $500 every visit, and I'm like, okay, that is just a rip-off, at that point I'm like just go to somebody and get a cream, right, if that's more valuable.
Speaker 2:At that point it's like no, no, that's a rip-off. I'm always like, first and foremost, let's look at this financially, right. I don't think anybody should be spending that kind of money for it, because I know at that point you can just get it another way. I think when you're looking for when it comes to the testosterone. That's probably the biggest thing, honestly is the cost, then your dosing. You just want to make sure that whoever is doing it actually cares about monitoring. I'll meet people who are like well, I got my testosterone pellet and then they're not even going to check me for six weeks. That's a red flag. Insurance should cover blood work. Insurance does no problem, even though they're not. My provider is not covered. Insurance covers the blood work part. If you're getting a cream, make sure that your doctor can at least tell you where it's compounded from what's in it?
Speaker 2:and then also, do they have reasoning behind the dose they want you to be on? When are they willing to test you again? Are they willing to change the prescription based on how you're feeling? Sometimes, because testosterone gets metabolized so quickly, sometimes patients need to apply it twice a day, right, so every 12 hours, because some providers will butt heads on that and be like, no, we're not going to do that. I mean that's just absurd, honestly, because that's that doesn't really matter. It should be based on the patient, not their belief system, but it'd be a red flag For me. That's a red flag.
Speaker 2:They need to be at least monitoring your symptoms. How are you feeling If we do it this way? Does it make you feel better? And that's the same way for my prescription drugs, right, right, like. I have one that's broken up kind of weird. My doctor the first time he saw that he's like that is a weird dosing schedule, but it doesn't matter because that's what works. It's worked. And the progesterone progesterone I'm actually more concerned about because when it gets dispensed through a med spot or a wellness coach or something, just because that seems to be made more on the black market than anything else Interesting yeah.
Speaker 2:You just don't know what's in that. I mean you can find a progesterone cream anywhere.
Speaker 1:It's just like sold everywhere.
Speaker 2:It's wild, and so I trust that even less. And then, of course, there is a. I'll have to send this to you. There's an amazing publication on estrogen dosing and route of administration and which type of estrogen, and it is so phenomenal they do different types of vaginal estrogen insert and how much the blood levels actually increase in estrogen Cause there's always that argument does vaginal estrogen actually increase your serum levels or not? And it is based on dosing and even where you place it, when you put it in Interesting.
Speaker 2:Yeah, it's really, really interesting. And then, of course, the different types. You know, the patch, the oral. They even use the old school primary in it and it's it's a really great publication. It's really technical, yeah, but it's also just invaluable data that everybody should have who's taking estrogen of any kind, cause it goes into risks, benefits, how fast the levels rise in the blood after taking it, and it's really really great, and so I'm hoping in the future we can have something like that for testosterone right.
Speaker 2:Because you know the different ways that you can get it, safety profiles, and I will say a friend of mine really wanted to do the pellets but, as with case with a lot of endometriosis patients, she has this a bizarre, bizarre comorbidities and one of them is her scarring. Yeah, she's really bad, and so her body wouldn't actually accept the pellet. It just kept spitting it out Like and she would just scar horribly. So it wasn't a fit for her.
Speaker 2:And that kind of was like a. That was one of those things where I was like, oh, I hadn't even considered that before as a possibility.
Speaker 1:Yeah.
Speaker 2:So for her it didn't work, and I know that I've. Actually, I was getting a hundred milligrams and I learned that I couldn't get a whole 100 milligrams. And this is the other issue with some of the med spas they don't have the ability to like do more precise dosing with the pellets. Right, I got a hundred milligrams pudding, so it was easy. Well, my body kicked it out pretty easily.
Speaker 1:Like.
Speaker 2:I was riding and I was probably more active than I should have been, but it came out and my doctor was mortified. He's like you're ruining my like. Patients never have a pellet come out. But what we ended up doing was breaking it into two fifties so 50 milligram, 50 milligram and placing them differently inside.
Speaker 2:It's like so that's one of those things where it's like, okay, based on your level of activity body, yeah Right, you go to a bio team head spot and they're just going to, not, they're just gonna put it in out the door, yeah.
Speaker 1:I think that's well, and that's part of it too is like knowing who's putting it in, how they are gonna cater to your body and to your needs and your lifestyle, because not everyone is gonna react the same to everything, and that's why I think it's so individualized. But the thing about estrogen, too, that more research is starting to back up is, if you go into early menopause and or surgical menopause, your risk of dementia is much greater without that estrogen replacement, and I think that it's a fairly new thing that's starting to come out more and more like no, this is not just about dry, that's not just about your skin getting loose although that is for some of us a hard thing but it is about the memory. What is your longevity without it? What is your longevity with it?
Speaker 1:You have to look at the big picture, but you also have to consider where you are now. You've gotta feel better, you've gotta be able to, you know, not just survive in life, and I think that's where a lot of us have been, because we lack the education to give us informed consent and there's so much coming out right now. I think a lot of the people that you probably listen to on podcasts or online are probably similar to me, and there's so much that even they're learning right now. That has just been like oh, I never even thought that it would affect this system of my body, but clearly it is, and how intertwined that is.
Speaker 2:It's frustrating because my doctor he's probably like he's in his mid-80s and he's been doing this for so long, for so many decades. And it's frustrating because he'll just sit back and he's like yeah, yeah yeah, yeah, you've known this, but the thing is, there's always been such a pushback, right?
Speaker 2:And even though he's like, I'm an OBGYN by trade. Technically, you know, he's like, but I've never done obstetrics outside of school. He's like, I've only done gynecology. And it's sad that, because of the way the institutions work, nobody knows about someone like him, but it's colleagues do within the network, right, right, you know, they know, but he you know. And now it's like if you're not writing a book or you're on social media and no one's gonna know who you are. And unfortunately, when it comes to the hormone replacement therapy space, we have two very differing camps right now. And it is I don't know if you've seen it, it's like drama and I love to watch it from afar. You've got these big time like self-reclaimed menopause experts, new York Times best sellers, and they really think that they are the best ever, fighting with these other ones that are actually considered maybe the fringe, but they're the ones actually working with patients, not just screaming on the internet.
Speaker 1:Right.
Speaker 2:You know it's being the difference that's happening, rather than just standing by old doctrine. You know the high and mighty, the high like we were talking about before.
Speaker 2:Rather, you know and these are like the more outside the box thinkers that are realizing the human body is not just cut and dry, right, and I'm loving this interaction. And then, of course, there's like Rebecca Glaser. I was telling you about her. She just stays completely silent. I wish I could get her on social media, but that's just not her jam. But you know, she's actually out there doing the publications on it.
Speaker 2:Couple of years ago, menopause organization from Australia, they were rewriting their guidelines. I had emailed them because I said I was looking for your guidelines and you don't have anything from Rebecca in your guidelines. And they responded and like, well, we don't like her research. Essentially is what they said. They were like well, you know, it's not rigorous enough. And I said but your clinical guidelines include quote expert opinion and that's not based on any data. I was like, because I know how clinical guidelines were.
Speaker 2:Anyway, they didn't want to talk about it. They were just like okay, well, yeah, and you mind handing out this pamphlet that we're doing in a survey on I don't know what it was some sort of hormone replacement therapy that they were going to be trialing for updating their guidelines. And I looked through the nice guidelines in England they only have testosterone listed for sex drive and that's it, nothing else one tiny sentence and again you'll bring up well, what about like Rebecca Glaser's work? And they're like, oh well, you know it's not rigorous enough, and I'm like you've got to be kidding me. It's the same thing with in vitriosis.
Speaker 2:You point out these excision studies, like not rigorous enough. I'm like half the stuff that you're relying on is much more flawed. And so it's just frustrating because there is data there but they will come up with whatever they can to try to discount it, and I find that really it's fascinating. But the people who follow those camps, they fall in line with that. Right, you know the very doctrine camp. They're like well, there's nothing in the guidelines and they just stop at that. They don't understand the complication behind you know, developing the guidelines. But then you've got the other group that's like, hey, the guidelines aren't right, we need to update the guidelines.
Speaker 2:And so it's funny to see the parallel there with the in vitriosis, yep, and the hormone thing. They're like that's the same thing. Fortunately we have bigger names fighting for hormone replacement therapy than we do for. You know, on the endometriosis side, yeah, for both camps the voices are kind of getting evened out. But I'm enjoying that. I think that's going to help us move forward.
Speaker 2:Honestly, more Mm-hmm. And I think we're as you go through it and as we move through it, because I know at the beginning of my journey I was a lot different than I am now. I was more like hard line and now working with more patients. Every time I work with a new patient or I chat with somebody, I'm humbled in some way. Mm-hmm, you know, yeah, I'm like, oh, wow, okay, that doesn't work for everybody Like I thought it would, and so I see that with, like these coaches that I can tell they have figured out some of that worked for them and they wanted to work for everybody, and they're going to apply it to everybody.
Speaker 2:I'm like no, I used to think that too, and now it's like we just have to, like you said, get out of the survival mode and just find a way to at least improve quality of life. That's what I always say and like let's improve quality of life first and then move from there. And staying hard lined about following a guideline based on sub-hard data just to follow it but still have feel miserable, that doesn't make sense to me.
Speaker 1:That's not logical.
Speaker 2:And that's a poor provider, you know.
Speaker 1:I also think those that are foundationless in their research we have to be aware of. On social media, I mean, this is something that when you're looking at following a provider or getting advice from, it's important to look at where is the research coming from? If they're making big, bold claims of something, yeah, because and this includes endometriosis but hormone replacement therapies you need to know, just like you said, where it's compounded, what it's compounded with. If they're trying to sell you something, a program, for thousands of dollars, chances are it's not got a good foundation.
Speaker 2:Yeah, and, like I point this out to people, yes, I'm lucky to have found my provider and to be able to get to him. I would hands down argue he is one of the best in the world when it comes to hormone replacement therapy. And I pay $25 a week, right, right, I'm not paying something that's completely unattainable. My ADHD, like the vibrance, is more expensive every month. Yeah, if I didn't have insurance then this would be. You know what I mean, right? That's why I'm like it should be within the realm of possibility. So that's why the pricing thing I look at and I'm just like, don't get conned.
Speaker 1:You know, and it's so easy when we're desperate.
Speaker 2:We want everything to work. I almost did too, because I was looking at different hormone providers and I found this one. It was like, oh, this looks like a really great one. And then it was like a $500 consult oh my God, what. That just kind of blew my mind. So it's definitely, it's just important to maintain, you know, like a middle ground of some kind, right, try to find.
Speaker 2:I always say the truth is somewhere in the middle of the extremes, and then where your truth lies is going to be somewhere on a spectrum, and then where you feel best is also going to be on a spectrum.
Speaker 2:And it's good for me to remember that when I'm working and chatting with other people, basically what I have to remind myself is, instead of being like, okay, is this person doing what I want them to do or what I think they should do, I have to stop and ask how do you feel right now? You know like, what do you think could improve? And you know, if I'm working with someone as a patient advocate, you know we sit down and we look at you know what have they tried? What kind of providers are they seeing? Right, or it's like somewhere in there there's always a well, I'm following this person on Instagram, or well, I'm like this is where we're going to go wrong and it's always like they've thrown in some weird supplement or they've are hard-lined with this one doctor that says you have to follow every guideline and they haven't opened up their mind to maybe trying something else.
Speaker 2:It is just very nuanced and I hope that, as the information continues to come out, it doesn't get always into the wrong hands Right, because that happens too, and, again, anybody. You just have to be so careful with the way information is interpreted as well. Yes, because you know there's one really outspoken menopause expert that will take things and write on their blog about it as an expert, and I've read through their analysis of some of this information and it's not good Interesting. I'm like she's actually interpreting data in a very skewed way. She's very emotional and so I think she interprets it emotionally as well. Yeah, and I like to take a step back and look at the data. The reason that a lot of stuff can get published now is because a lot of it is pay to play.
Speaker 1:Right.
Speaker 2:And so in a lot of these publications, when you're looking at them, if you just read their analysis without digging into it yourself and saying that's what you're interpreting, you'll get this very biased approach. For instance, I wasn't sure I agreed with one of her analysis, so I looked at the publication she was citing and I looked at the actual numbers, which is normally you have to like download in a different accessory file or something right, it's not just always in the paper, right? And I was actually looking at the numbers and I was like, no, no, this isn't actually what that was showing, because they can say statistically significant, but that doesn't mean anything meaningful, right, and they love to throw that in there. Well, there was a statistically significant and I'm like, oh my God.
Speaker 1:One way or the other.
Speaker 2:Was it clinically meaningful? Did it even matter, right? So, anyway, that's a whole other thing when it comes to research, but if somebody is presenting research like that, it's important to be like well, did you?
Speaker 1:look at the data. You know, Did we look at the data? Good at that. Is that something that we could say? Hey, Kate, I came across this research. Do you mind looking at it and seeing if this is valid? Because I feel like for a lot of us. We see this research and we're very confused by okay, is this valid, is this not? And sometimes, what they state we don't have access to, which is, I think, absurd, because it's like medical journals and things like that.
Speaker 1:So if it's something like that, it is always better to ask someone that can analyze that data that is, a third party, not someone who is connected to that research or that paper, because it is going to be biased one way or another. And so finding someone that can analyze that data, making sure that it's accurate, give you an accurate description of what they're actually saying in that data, is gonna benefit you in making your next steps or, and maybe help in your opinion one way or another.
Speaker 2:Yeah, that's one of my. That's actually one of the formal like roles of a patient advocate can be, you know, obtaining data like that and looking at through with the patient. And when it comes down to, you know, looking at data, I have my own network. Sometimes there's data that I'm there's some types of statistical analysis that I'm really awful at, so I have my own resource group. You know, I have friends that I can reach out to and they'll, you know, like, oh, yeah, no, this is what that means or doesn't mean. And, like you know, like gut check with others, and so I have no problem when people you know send me something, or like, kate, you know, what do you think about?
Speaker 1:this, and I always have an initial reaction right.
Speaker 2:I'm always like oh yeah, this is gonna be horrible.
Speaker 1:And then sometimes I'm wrong. Somebody sent me one yesterday.
Speaker 2:They're like, hey, I'm thinking about buying this. It was not related to endometriosis. What do you think it had to do with water? Oh yeah. And I was like, oh yeah, this is totally a trash product. They're just trying to make money. So I dug into it for quite a while, looking at research, and went oh well, actually there is some. There's like there actually is some evidence here that it can do X, Y and Z. Here's the literature on that. Don't know if it can do what it's claiming health-wise Right. But I had to realize that my initial reaction to it was not accurate.
Speaker 2:There actually is some research done and evidence that it did something right. We just don't know if it did exactly what it was claiming. So that's another part of it. But yeah, when it comes to the research part, the gut check part digging in with somebody else, it's really important because I will see a lot of these, like health coaches, say that they're looking at the data and they'll give their analysis, and I can't tell you how many times it's been wrong.
Speaker 2:There are some wonderful well-meaning ones on social media that I've direct message and said, hey, actually this is what I looked at and this is the result I got from the data and they've actually taken it down or modified, and that I really appreciated that because I would have no problem with a peer doing that to me either. Right, kate, you actually looked at this data wrong. Okay, great. That's why we have the review process. But unfortunately now with publications they're mostly paid-to-play and this is why we have retractions. I try to tell people articles get retracted. There was one recently I reached out to the editor about and he thanked me because they had approved a publication that was citing a retracted article and that can happen depending on the dates. So I double-checked the dates the article had already been retracted by the time they published or had even started writing, because it had been like six years and I caught that, like you, can't cite a retracted publication.
Speaker 1:Interesting Things, that if you're not looking for that stuff or you're not aware of it, something that you would completely miss. And not everyone has that skill set, and that's why I think it's important to know like different people that do have that skill set, so that you get better information.
Speaker 2:Yeah, and there's all. You know. I have my list of resources. I tell people I'm like like who should I follow for this? I'm like, go here, go there. You know, these people I trust. Of course don't take it as like gospel, but you know it's a start, you know. And then I'm always like do your due diligence. At the end of the day, that's.
Speaker 1:And what you have to do. That's for everything.
Speaker 2:That's for your providers, that's for medications, that's for supplements, everything that you're going to take. But I feel like, when it comes to hormones, when you're having surgery for whatever reason, maybe you need to have the ovaries out, maybe you just need to hysterectomy, but I think it's important to know that all of that can impact how your ovaries function long term. And then, just because you left your ovaries doesn't mean you can't be having some sort of issue that would necessitate hormone replacement therapy. So it's totally OK to find a provider that will work with you in that, because people will often say I'm not going to be like, well, I'm not in full-blown menopause and I send them to somebody that's called a menopause expert. They're like does this make sense? And it does, still should see somebody. That's just their focus. And so your primary care physician may say well, you're fine, you still have your ovaries. It's OK to pursue that further. I think it's important for people to know, and I think it's important even if you have both ovaries, one ovary, no ovaries.
Speaker 2:You can go through any variety of these fluctuations. It is so nuanced and customized for each individual so it's hard to find a provider that can treat all of these things. But I think it's important to note that our OBGYNs general OBGYNs just like they aren't cut out for endometriosis surgery, they're not cut out for proper hormone replacement therapy. And, as wonderful as our surgeons are, they're also not hormone experts. So a lot of people will be like well, I went to so-and-so and I'm like yes, he's an exceptional surgeon, really wonderful. Great that they put you on an estrogen patch after removing both ovaries. But it doesn't stop there. Unfortunately, they're not going to be the expert in that. So that journey continues on and a lot of people get frustrated. They're like I thought I went to an expert. I'm like you did for Indo.
Speaker 1:But not a hormone replacement. This is a whole nother beast.
Speaker 2:This is a whole nother thing that we did. So I try to. You know it's important. We need to start working on that beforehand. Ideally, these surgeons would have someone they could refer patients to. But again, who are they going to refer them to when it's so difficult, right? So I think that's the trajectory for a lot of us. I think that it's just important to track those symptoms, Even not in full blown menopause, still track the other symptoms that could be hormonally related, and then do your best to find a provider that'll at least do some initial testing and have that data so you can take it to maybe somebody else that you find as a provider. Sometimes you just have to start with a simple Google search.
Speaker 2:Yeah which can also be scary.
Speaker 1:It does, yeah, it does.
Speaker 2:That's what I hate that we even have to say that. But it's like top hormone specialist, best hormone specialist or something like that, and then sift through it. Does their website look scammy?
Speaker 1:Sometimes you need to go to three different ones to get a good vibe, and that's OK, yeah $500 consult.
Speaker 2:Totally OK, you're not going to miss out on anything. Great if you can't afford that?
Speaker 1:No, no, there's other options for sure. Ok, thank you so much for breaking that down for us, for talking about that, because I think it's something that every person, through change of life or surgical menopause, is going to go through at some point. So understanding it is going to help people better navigate their journey and making sure that their life is just a little bit easier to live honestly. So thank you so much for taking the time. It's always great to talk about this so thank you so much.
Speaker 1:Thank you for having me. I really appreciate it. Yes, and until next time, continue advocating for you and for those that you love.