Endometriosis Care, Treatment Options, and Patient Advocacy | Katie Boyce

In this second episode of Fempower Health’s four-part series on endometriosis, we speak with guest Katie Boyce, a Board Certified Patient Advocate with a robust background in biochemistry and astrophysics. We discuss the complexities of endometriosis care from patient and specialist perspectives. We explore the treatment options for endometriosis as well as its causes and the critical importance of specialized care. 

Through Katie's personal journey with endometriosis and her experience working with endometriosis patients, she shares expert insights on the nuances of endometriosis diagnosis, the controversy surrounding various treatments, and the hopeful future of new medical advancements.

Key Takeaways on Endometriosis Care

• What makes endometriosis a particularly challenging condition to understand, diagnose, and treat

• Pros and cons of popular endometriosis treatments, including the debated use of drugs like Lupron and Orilissa, and what the latest research says

• The critical role of expert surgery for endometriosis and fertility concerns, and why choosing the right surgeon matters for long-term outcomes

• How endometriosis patients can navigate the healthcare system to find the best care for endometriosis, including tips for vetting doctors and making informed treatment decisions.

• Promising new treatments for endometriosis and the future of research in the field, offering hope to those affected by the condition
  

"The journey to managing endometriosis is as much about empowerment and informed choices as it is about medical treatment." - Katie Boyce

Related to this episode:

• Resources for Endometriosis

• Connect with Kate Boyce and follow her on Instagram

• Part 1 of 4: Innovations in Endometriosis Diagnosis, Pelvic Pain Management, and Patient Support

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Guest Bio

Katie is a board-certified patient advocate, owner of Endo Solutions LLC, and consulting chemist with a Bachelor of Science in Biochemistry. She assists individuals in finding the right integrative healthcare team needed to navigate the complexities of living with Endometriosis. Additionally, Katie educates and empowers patients on social media, working to bridge the gap between healthcare providers, researchers, and patients. She serves as a consumer reviewer for evaluating medical research applications submitted to the Department of Defense Peer Reviewed Medical Research Program, reflecting her commitment to ensuring the patient's voice is heard and that research initiatives align with tangible patient outcomes.

Transcript

Georgie Kovacs:

While we hope these discussions will inform and support your journey with endometriosis, we encourage you to consult with your doctor and find the best approach for your needs. Now let's embark on this journey together inspired by Kate's dedication to knowledge, healing, and the power of sharing our stories beyond our illnesses. Let's get started. Katie, it is such a pleasure to have you on the Fem Power Health podcast. We had quite the bonding earlier this week getting to know each other, and it turned into quite a lengthy conversation. And I'm thrilled we hit it off because you are clearly a superstar in endometriosis and, quite honestly, all things health care and research. And I was pretty blown away by getting to know you. And, again, I'm just really honored that you're you're making time.

Georgie Kovacs:

And so we are starting this series on endometriosis. And because I'm interviewing a doctor, I'm also interviewing Margaret Melville of Lhasa Health and a few other folks. And so we'll see the order based on the flow of conversation. But, again, excited to have you here today. So for those who may not know you because we know that endometriosis community is quite tight, but there may be folks who are just kind of getting to understand endometriosis. So maybe those haven't met you yet. So tell us all about you, and then we will dive into a very important conversation.

Katie Boyce:

Thank you so much for having me. Absolute honor, and you're right. I'm I'm thrilled that we got to have our little meet and greet prior, just because we did hit it off so well. Well, my name is Katie Boyse. I am a board certified patient advocate, but most importantly, I say that I am an endometriosis patient myself. My story is not unique. It is very traditional for anyone with endometriosis. You know, your 14, 15 years of misdiagnosis and confusion and no answers until I finally found, you know, that one gem of a doctor who had that hunch, and he changed my life.

Katie Boyce:

I was able to I'm one of the few able to, you know, obtain proper endometriosis care, which does look different for everybody. But for me, it was expert excision of the disease. I did end up having a hysterectomy as well as having an ovary removed. The disease had definitely gone on long enough to cause quite a bit of damage internally. So after going through that process, I started to help others figure out how to navigate their endometriosis journey, how to find the proper care for them. I also during that time, after my surgery, my grandfather was diagnosed with bladder cancer. And trying to navigate that was also incredibly difficult. And I had that firsthand experience of trying to be the advocate for somebody who I also loved and realizing that the system is broken and it's complicated.

Katie Boyce:

So that really drove me to look into what what what more I could do. And so then I found the the board certification. I decided to pursue that, and I've done I've had that for a couple years. One thing I really enjoy about that certification, the requirements for for continuing education. So I'm never done. I'm always learning, especially, like, cultural competence. And the more patients I help, the more my eyes widen to the complexities of endometriosis, how not all of us have the same access to the same care, and how unique our journeys are. And I was telling you before, when I started this off, I was thinking, oh, I'm going to just show everybody how I did it, and everyone can get it done the way I did.

Katie Boyce:

And then I quickly learned that my role as a patient advocate is genuinely to just make sure that patients have all of the information available, all of the accurate information in front of them so that they can make their own informed health care decisions.

Georgie Kovacs:

And, you know, it's funny that you say that because I've done well over a 100 interviews now across all women's health topics from various experts, and that is the theme. Nothing is a prescription. Like, there are so many root reasons why someone may be going through something, and I think it's especially complicated with for a variety of reasons, which we'll get into today. So thank you for your for your dedication, truly. I mean, you really do your research, and you're not afraid to disagree with with people. But you do it from an evidence based perspective, which is why I wanted to have you on. And and for those who may be newer to the endometriosis community so I actually have endometriosis as well. And I've said in places I've been interviewed that sometimes I feel guilty because I'm asymptomatic.

Georgie Kovacs:

To be honest with you, the more I've gotten to learn about endo, the more I realized I'm symptomatic. But in such a nuanced way that if I didn't know about endo, I probably would never think about it. Like, I know so many people deal with severe pain. And, again, because our body's complex, who knows if it's endo or something else, right, that's causing some of the things that could be symptoms of endo? And so I had a how I discovered it is I had a 4 year fertility journey, and I kept being told that it was unexplained infertility and having a health care background, I was like, it's either the science hasn't caught up or the doctors aren't trying hard enough. And I remember, one of my friends who's a clinician was criticizing me for jumping around to doctors. Look. I don't disagree that with our movable society, so to speak, that we don't have the doctor we grew up with to know everything about us. We still have an issue where there isn't enough research in women's health.

Georgie Kovacs:

And so I did jump from doctors because I was like, if this person isn't doing something new or different to help me try to have a baby, then I have to move on to someone who's gonna think differently. And it was the 10th doctor. And he, you know, asked me a bunch of questions. He did very intense testing, and he's like, I think you have endo, but the only way you're gonna know is to get surgery. So I had the surgery, existing surgery, and I had an IVF and got pregnant. And to this day, I don't understand mechanically why I needed an IVF, but I was so desperate at that point. I was 40. I was at the end, and I was like, I gotta decide.

Georgie Kovacs:

And I chose to for it to be my last IVF, and I got lucky. So let's dive into where like, tell us from your perspective because there's this misunderstanding of endo being about the uterus, full stop. And there's so many debates around how it manifests, and you have some interesting information to share. So I'd love to start there, and then we're gonna dive into the diagnostics and treatment. And I think this will help wrap the story amount the complexity.

Katie Boyce:

Yes. Absolutely. You know, we have to unfortunately, we do have to get into a little nitty gritty about, you know, the history of what endometriosis is or isn't before we can really lay the groundwork to understand, you know, why we face what we face with diagnostics and treatment. So I always like to start off by, you know, people are like, well, what is endometriosis? Isn't it just pieces of the uterine lining that come out of the fallopian tubes? There's something called retrograde menstruation, which does still seem a little technical. So usually you'll hear people just say, well, isn't that, you know, the uterus tissue that goes gets into the wrong place? Like, well, originally, that was sort of the thought. Ironically, the individual who first came up with the theory is called of retrograde menstruation. His name was doctor Samson.

Katie Boyce:

He came up with this theory in the 19 twenties. But what's interesting is that his words actually do get a little bit twisted and misconstrued because when you read his actual literature, he does say in there, you know, this might be what's causing it, but it's different it's a different tissue. So it can't explain all manifestations of the disease. So it's fascinating to me that in popular culture, OB GYN culture, they really just stuck to that one bit. But if you read his original work, he even admits, you know, this is much more complicated than that. And that gets missed, you know, lost in translation. So it's important to recognize that that was said because when you take that tissue and you take a biopsy of it and they look at it under a microscope, it is different than the uterine lining. And people say, well, what, you know, does that really matter? And it does because there's a lot of distinct differences between the endometriosis tissue and the endometrium, the internal lining of the uterus.

Katie Boyce:

The most important difference is that it behaves differently. Right? So this is important because things that you think are going to impact your period or the uterus, they assume will impact the endometriosis lesions, it doesn't. It doesn't impact it the same way because it's very different tissue on a cellular level. So what you have one of the biggest differences is that endometriosis lesions make their own estrogen, and this is incredibly important. The endometrium, the internal lining of the uterus does not create its own estrogen. It relies on estrogen from the ovaries for its response. So this is why, you know, we'll get into treatments that control the ovaries and how they assume that would control the endometriosis lesions. Unfortunately, think of endometriosis lesions as kinda having, you know, their own mechanism, their own little entity in there.

Katie Boyce:

They're kinda living however they wanna live. And how but then we think, okay. Well, if it isn't coming from the uterus, how are we even getting this disease? And there are some there's a variety of different ideas. So is it possible that maybe some of that endometriosis did result from, you know, retrograde menstruation during your menstrual cycle, the period blood going through the the fallopian tubes? Maybe because we don't know for sure if that doesn't play a role. A lot of the big proponents for that theory believe what's happening is that it's go undergoing some sort of cellular transformation. That's why it looks different. So they think, okay. Well, it's going out into a new environment, and it's changing a little bit once it's there.

Katie Boyce:

Maybe, you know, from a scientific perspective, I can't say, oh, there's no way. But I also can say that there's not enough evidence to say that that is the cause, especially when we start to look at the even more detailed nuances of endometriosis. So then we're looking at this disease that we have found in newborns. We have found in fetuses that were the sad result of some some sort of prior passing away. And then we've also have cases of it in the male sex. We have endometriosis that occurs in very rarely, but we have found it, you know, in the brain, in the eye. You know, how is it getting into these locations if it's supposed to just be coming from the uterus and flowing backwards? And everyone will kinda come up with their own little well, it could be doing this, and it could be going through the lymphatic system. But then you talk to surgeons that are like, we're not seeing like, this isn't matching up with what some of these theories are.

Katie Boyce:

So one of the best fit, I would say, models that we have that can explain why is it, why are we seeing us born with it, why are we having symptoms prior to menstruation, Why has it ever been found in the male sex? And this was a theory originally put forth by doctor Redwine. He's recently passed away. And this is idea that we're technically born with endometriosis. And I like to explain it like this. When we become a fertilized egg and we're developing, we undergo embryogenesis. So we're going through the specific process of development as a human, and we go through organogenesis, a very specific process of where we're developing our organs. And in all of us, it all starts the same. We all start out as female.

Katie Boyce:

We all have 2 x's to begin with. So or x is the only chromosome we got present. So we're we're developing as a female, and we've got these different layers that are called germ layers. And each layer has a specific role as we develop. And those layers will follow a pathway as they develop into certain tissue and certain organs. And so our reproductive organs for male and female, they all follow the same pathway. However, if there is the presence of testosterone, whatever, then we go into, you know, becoming a male, if there's the wild y chromosome present. I'm not an expert in that process, so I may I don't go into that too much, but I do understand and I can explain, you know, the process of the development.

Katie Boyce:

And so that is a way to explain. So this tissue that is supposed to go on to turn into the uterine lining, it's not making it there all the way. Right? So it's going on this pathway, and a lot of this pathway is where endometriosis is found when surgeons are operating. And so if that's the case, it's just misplaced where it was supposed to go, and that can explain, oh, well, that's how it could be found in males. Right? But, you know, we're all starting out the same. So I hope that makes sense to people, but that doesn't why we have individuals that have it that are asymptomatic. That doesn't explain all of it. Right? So we have to look at it from all these different sectors, and it is similar in a lot of ways to how cancer is.

Katie Boyce:

You may have a gene that predisposes you to having cancer, but you don't may not get you know, you may not develop that cancer. And I look at the same with endometriosis. Maybe there are a lot of people out there with endometriosis lesions that don't know it because maybe there was maybe there's an environmental factor. Right? Maybe there's an epigenetic component, which just means our environment in some way is triggering our genes to, like, be expressed in a certain way. So I think it's just so important that everybody understands from a background that endometriosis is incredibly complex. We do not know what causes endometriosis. So when people say we have to address the root cause, we don't know the root cause. We do know for a fact that the tissue is different than the endometrium, the lining of the uterus, and we do know for a fact that ovarian levels of estrogen do not control the behavior of the lesions.

Katie Boyce:

There can be issues with inflammation and whatnot, but we currently we don't have a way to control the endometriosis lesions themselves.

Georgie Kovacs:

Did I hear you right? Did you say estrogen does not play a role?

Katie Boyce:

Nope. What you're hearing is this. Increased levels of estrogen, right, whether it's just certain times of your menstrual cycle where the estrogen levels are higher or whether or not your ovaries are completely suppressed, estrogen is naturally inflammatory. Doesn't make it bad. We need inflammation. Estrogen is incredibly important, but it can be inflammatory. So what happens is that when the systemic levels of estrogen are increased, you can have an increase in inflammation in certain areas and the lesions do have, not all of them, but a lot of them will have estrogen receptors, and it can kinda get in there and it triggers those estrogen receptors and the lesions can maybe inflame more. So that's where estrogen plays the role in inflammation.

Georgie Kovacs:

I guess what I'm curious about, because this will get into, like, some of the treatments, is, you know, there's all this discussion. I know a lot of people say, well, you should get the laparoscopic surgery, and we'll again, we'll get into the treatments. But does that increase estrogen potentially also make them grow?

Katie Boyce:

If we're going looking at from the surgical perspective, there are a variety of methods for removing endometriosis. And I think as we know with almost any other condition or disease, we know that not all surgeons are equal. Some surgeons have more training. And I know for a fact, you know, when my grandpa was diagnosed with cancer, we're like, we're gonna find the best. Right? And I'm hoping that we get to changing that idea with endometriosis. Right? You're diagnosed with endometriosis, and immediately, you're like, I gotta find the best because it matters. When we go to our regular doctor say we go to our OB GYN. OB GYNs, unfortunately, do not get the same level of surgical training as any other surgeons out there because OB GYNs aren't surgeons.

Katie Boyce:

That's okay. They played a very important role in health care. Unfortunately, they're also expected to do surgeries. They're expected to do c sections. They're expected to do hysterectomies. They're expected to do all of these surgeries without having the necessary additional training. And so and maybe that's just a product of women's health. Right? So you've got these I feel bad for them sometimes.

Katie Boyce:

You know? They're just putting these positions where it's like, okay. I've got this patient in pain. I'm gonna do surgery. And what are they taught in their little bit of time? Okay. Well, we'll do laparoscopic because it's minimally invasive, shorter recovery. But what they utilize are these these tools that just easily superficially burn. Right? So they just kinda, like, they'll go in, they'll see some lesions, like powder burn, and then they kinda just they ablate them or they cauterize them. Sometimes they'll fulgurate, just a little bit of a different type of energy source.

Katie Boyce:

And they go and they look, alright. Okay. We did that. And they'll say, okay. We got your endometriosis. And then sometimes they'll say, now you need to be on birth control to prevent it from coming back. Sometimes they'll just say, come see me next year. We're gonna have to remove it again.

Katie Boyce:

The issue with that is that they're just superficially removing the disease. Right? And we also know endometriosis has a variety of appearances. It doesn't just look one way. So you it takes time for surgeons to learn, Okay. Do you see this little bit of tissue over here? It looks a little bit shiny. That means there's something going on. It's that detailed. It's that complicated.

Katie Boyce:

So it easily gets missed, and so patients continue to have pain or it's back. So it doesn't take very long for something that's been superficially shaved off, you know, or just burnt to reappear. And so that's why it comes back a lot. There is no cure for endometriosis, so it can come back no matter what. But our likelihood of it coming back is a lot less when we can have find a surgeon who can meticulously cut the disease out. And I, again, I relate it back to cancer. What they do in cancer is that they remove around tumors to the point where they can ensure there's no more cancer. So they call that excising with wide margins, And we can't see cancer.

Katie Boyce:

Right? You can see the tumor, but you don't know where all of the the malignant cells are, so they'd go as wide as they can until they don't find the cancer anymore. And a lot of these top endometriosis surgeons do the same. They'll say, okay. This is where we see the endometriosis. We're gonna go ahead and go a little bit wider because maybe there's something that we're not seeing there or they're seeing areas that don't look right, and they're cutting it out. And the thing is you can't just cut wide with endometriosis. You have to cut deep. So this takes extensive training, and it's a hot topic because the amount of training that it requires.

Katie Boyce:

And it's expensive, and these surgeons that are learning to do this are paying out of their own pocket. This is not included in their education. So it's this drawn out process. And so discrepancy in your care or our care and the discrepancy in whether or not and how fast endometriosis is coming back has a lot to do with the surgeon. That being said, you can go to the best in the world. They can remove everything. And for some reason, you know, a couple years down the road, you're having symptoms again. You go back.

Katie Boyce:

There's endometriosis there. If it's in the same spot, sometimes they call that persistence. K. It wasn't fully removed. Sometimes it's in a different spot. So that's the surgical part. And then for the estrogen part, because we don't know what causes endometriosis, We don't know what causes it to recur in some patients. We don't know the actual role of estrogen in that.

Katie Boyce:

Right? So can estrogen cause residual endometriosis to continue to inflame? Yes. And what happens is the inflammation process is what's causing the growing. It's not necessarily growing. It's this repeated tissue damage process. So tissue is damaged. The body naturally tries to heal it, which we heal by making scabs. We heal by making scar tissue. So as that repeated damage and then healing process is happening, you get adhesions.

Katie Boyce:

Right? You get scar tissue. And over time, this is why a lot of us believe endometriosis is progressive, not because the lesions themselves are moving around, but because it's this repeated inflammatory process. And estrogen can promote that inflammatory process. So that's why there's this whole idea. Let's decrease the estrogen levels, and hopefully, endometriosis resolves. It can reduce inflammation in some people, but then we have to remember, endometriosis makes its own estrogen. Right? So it could still be in there just doing its thing, inflaming on its own. You know? So that's where the making sure we're cutting

Georgie Kovacs:

it out all the way is important. So since you brought up the the clinicians, how does someone vet these clinicians? And one factor is because endometriosis can grow in like, near the bowels, etcetera, in an ideal world, what my understanding is is that you need to have almost a team of surgeons who are experts in various aspects of our internal anatomy, which, obviously, if you're not in, like, the biggest cities in the world, having access to that is very difficult. So that already almost puts endometriosis in a, like, if you don't have money, good luck position. The other is how to vet the surgeons because the last 2 things I'm aware of, and this is where I'd like for you to educate us, is, one, there is a company that purchased Nancy's Nook, and now they're vetting doctors. I guess through videos, they're doing surgery. And I I have no idea how to look at that because if I'm understanding it correctly, I think doctors also have to be paying on that. So, like, outer appearance, I'm like, who's really evaluating? And because there's so little to be understood about endometriosis relative to what we need, do we trust that sort of a site? You know? And and before that was there, I know Nancy's Nook has been extremely popular with the endometriosis community. But, usually, the writings that I'll see are it's really hard to find the surgeon.

Georgie Kovacs:

And so there's kind of this ideal of that right surgeon and how do we find them. And then if I can't afford it because of my income and where I happen to live and I can't keep flying to New York City, what do I do? So I I think that's 2 questions right there. So I guess part 1 is how do you know that this is the surgeon, and what do we do about this site?

Katie Boyce:

So I wanna start with, how how do we find the right doctor for our care? And this is where my eyes have been opened over the years because I started off one of those rah rah, find the best, go to the best, do whatever you have to do to get there. Life will be great. K. Then I start helping people, not just the United States, but the world. And I'm like, okay. I have to remember that I'm living in a 1st world nation with access. Even if I have to fly, I can still access. I'm now helping individuals in remote parts of the world.

Katie Boyce:

All they have is access to the Internet. Right? So that's, that's all they've got. They only could dream of finding the right surgeon. So what we do in that case is and this applies to everything. We have to find the right surgeon for our care, and that's not going to be the same surgeon for everybody. So my surgeon was great for me. Yes. He's fantastic at removing endometriosis, but may not be the best surgeon for someone else.

Katie Boyce:

So this is why I've developed, you know, a list of questions to ask your surgeon, and it's nothing novel. Right? This is kind of like basic questions you can get from almost anywhere. So say you find a doctor that you can access. They take your insurance. They say they specialize in endometriosis. Let's check this out. Of course, we have to remember, anybody can be a self proclaimed endometriosis surgeon. There are no standards for this.

Katie Boyce:

There's no, you know, technical fellowship. So anybody can say it. So I say, they take your insurance. Let's get to an appointment. Get new appointment and ask these questions. You know? Okay. How many endometriosis case cases per week are you doing? Alright? Are you doing complex cases? You know? Or are you just going in and kinda burning what you're seeing? Or are you having patients that are coming in with bowel endometriosis and bladder endometriosis? Okay. How are you addressing that? If you find that I have bowel endometriosis, are you going to just tell me that there's nothing you can do and put me on birth control? Or do you have a colorectal surgeon on call that can come in and help navigate that and remove what's necessary? Do you have enough training where you really don't even need a colorectal surgeon for most of the type of removal? Sometimes the colorectal is only needed for a full bowel resection.

Katie Boyce:

Right? They take out a whole piece. So it's really important to ask these questions because then you get the whole picture of how they view endometriosis and if you if your values align with those values. So if you're okay with not having a colorectal surgeon and just going on birth control, fine. Then you don't need to worry about it. That might be the surgeon for you. But say your bowel symptoms are horrific, you know, you're having blockages, that's going to be really important for you. So let's see if you can a surgeon then that will work with a colorectal surgeon. Some of these doctors don't even believe that endometriosis can occur in different parts of the body.

Katie Boyce:

That's like I put, like, a red flag. You know? So there's red flags and green flags, and I have patients, you know, always ask the doctor, can I record this? Because you're nervous. You forget. So that's very, like, very pointed questions to make sure that you're getting the best care that you can get. And honestly, when it comes down to it, it's a lot a lot of volume. Right? You want your doctor to primarily only be doing endometriosis surgeries or at least complex gynecologic surgeries. Because if they're still doing obstetrics, we all know that the primary focus is in endometriosis. And endometriosis, it's just so complex and so complicated.

Katie Boyce:

You almost want that surgeon to have muscle memory. Right? They're going in. They know where to look. They know how to cut it out. They know what they're doing. They're the absolute you know, just because not everybody knows this doctor doesn't mean they can't be a hidden gym or a diamond in the rough. Maybe they just don't get on social media. There are doctors out there like that.

Katie Boyce:

And so that's why I'm always like, let's not lose hope. Let's just find who we can, kinda look at their their resume a little bit, see what they've done for training, how they approach this disease. Let's go from there. As for the lists that are available, same thing. Right? There is no legitimate vetting method for an endometriosis surgeon. Right? There's just not. There are ones that have better reputations than others. There are ones that have done more cases.

Katie Boyce:

And, again, I look at it at volume. This person may be on a list, but how long have they been doing surgery? Right? Who was the person that even vetted them? Right? Did they even have a video done? And I know with this certain the the one you're talking about, the eye care better one, there are no requirements for saying, hey. We need your fur your most recent 5 cases. These individuals are allowed to say, oh, okay. I did a really good job on this one and send that one in. Right? And so there are just too many variables that you and I know that that's just not gonna work. Right? There's too many variables there to just blindly trust a list. And I I think they're very problematic.

Katie Boyce:

What I say to people is this. Hey. Here is a maybe starting point. If you're completely lost, these are some of the bigger names. These are ones that at least have been doing, like, fellowship training. Let's go through that list. Maybe make an appointment if it's feasible, and go from there. But it should never be like, this is a such and such approved doctor.

Katie Boyce:

Okay. Because that should not be the thing. Kind of what I had thought.

Georgie Kovacs:

I went on the site, and I'm like, I I'm not an expert enough like you are, but I know enough to say, I this just doesn't feel right, and I can't figure out why. So that's why I wanted to ask you the question. You know, these surgeons, some of them may just focus on endo. Some may do other things. Right? And, you know, endometriosis surgery is not 30 minutes. So if you'd look at 30 minutes times, you know, that's 2 blocks. Well, they have to prep for surgery. So let's say within a 2 hour block, they can do 1:30 minute surgery.

Georgie Kovacs:

I'm totally making this up. I have no idea how it works, but I'm guessing scrub time, blah blah blah. So that's maybe 8 hours a day they work. Who knows? Probably they're probably laughing at me. They're like, you think we work 8 hours a day? Okay. So that's 4, and then let's say they work 5 days a week. That's 20 surgeries a week. Does anyone really do that? So when you say a lot, like, what does that mean?

Katie Boyce:

I think on the low end of some of these experts, I've heard, like, 5 a week, 4, 5 a week. The high end, I'm talking South America. I'm talking the surgeons in Mexico that are operating on Saturdays Sundays. I'm talking up to 20 per week and complex cases.

Georgie Kovacs:

Okay. A a quick question that I just wanna jump into that I think is important before we move on to the rest of the diagnostics and treatment. Size of trials. So at the end of the day, you know, it's all about endpoints. We certainly don't wanna be rushing trials because we know it's hard to enroll women. We know they're complex, and we don't wanna just, like, get them done just to say, check. We did it. We want them to be good.

Georgie Kovacs:

But, there just seems to be this emphasis on size of trials, and, you know, I work in biopharma. I've actually done clinical operation side. I haven't done deep dives into trial design, but, you know, have a science background, etcetera. But you're probably because you're reading all this stuff, I know you're the person to answer this question on, okay, folks. When new studies get published, gut check without being an expert.

Katie Boyce:

Tips and tricks. Right? So let's say somebody post a really sensationalized headline, and you're like, oh, there's a new cure for endometriosis coming out or a new study with this result. The first thing I tell everyone to do is look at whether or not it is in vitro. Right? So in vitro means petri dish for the you know, that's the the bench. And then look at, okay, was it done in mice? Was it done in animals? Unfortunately, I have to make this little note. Typically, that can be pretty good data for most diseases. The problem with endometriosis is that we don't have a mouse model, which means for other diseases, they can replicate it in a mouse. Endometriosis, we cannot.

Katie Boyce:

Mice do not naturally get endometriosis. And since we don't even know how endometriosis happens, we can't make mice have real endometriosis. What they do is they take little bits of the mouse uterus and they cut it out and then they stitch it in the abdomen of the mouse. So obviously it's gonna respond how the uterus would. So then we look at okay. Say they have gone on from the mice, and we get to a human trial. Right? And then it it varies again. You know? Was it just an observational? Was it just a trial where people are just making notes in a diary? You have to look at this part of the information because then you think in your mind, even if you aren't aware of what a variable is, think in your mind, well, what could go wrong there? That's just that simple.

Katie Boyce:

Oh, well, maybe that person forgot to log something. Maybe that person wrote it down wrong. And then you also look at, okay, maybe it was, you know, the pinnacle. Right? The double blind clinical, you know, controlled randomized trial. Then but even then, it's still okay to look at it and with a, you know, kind of a a critical lens. I think that's when a lot of people are saying, well, there weren't that many people in the trial. If we're getting to the point where you're even doing a randomized controlled trial, 15 people is still going to be significantly better than looking at something with mice. Right? If it's 15 people compared to a 120 in an observational, that's still the 15 people and the clinical, the randomized clinical trial is still going to be better data than the one with a 120 that was just observational.

Katie Boyce:

And we do have to remember it's a process. Like you were saying, you know, it's not just, oh, we're gonna go ahead and just jump to throwing a 150 people into this trial with this drug or whatever we're doing. It's not safe. So the you know, we have this hierarchy, that most of us are familiar with and in science. And it's just important to trial size isn't the only important factor. There are so many other things that we have to look at, and that's where, you know, even funding comes in. And, unfortunately, now a lot of publishing is pay to play. So there's a lot of junk science that gets published just because you can pay for it.

Katie Boyce:

So, yeah, it's not just as simple as saying, well, there weren't enough people in that trial. Well, let's look at the details of it.

Georgie Kovacs:

That makes sense. Thank you. Now let's go back a little bit and talk about this path of diagnosis treatment. This is where, again, I'd love to clear the air. And what I love is that you've spoken to patients who have varying degrees of access, and there are varying tools all around the world. In an ideal world, you can go in, see your OB GYN. They can do pelvic ultrasound, MRIs, things like that. My understanding is, oh, but it could be missed.

Georgie Kovacs:

The only true way of surgery. We know there's things like inflammatory markers that, they can do through endometrial biopsies. So those are some of the the varying treatment or diagnostics that I've seen. And so, you know, what I thought would be good is to have, like, a holistic discussion. And if it's helpful to go, you know, point by point on each of these, that's fine. But I always like to just kinda lay the land and then discuss, like, what is this ideal state so that we don't miss endo? Because my understanding is the earlier we diagnose, the better in the long run.

Katie Boyce:

You know, the most traditional and the most what most individuals have experienced is just going in. And so you're having symptoms of endometriosis. Maybe they don't even know it's endometriosis yet. They do an ultrasound. Right? Either, you know, on external or in or a transvaginal ultrasound. And they'll say, okay. Well, everything looks fine. Right? And then the patient's left to just, you know, suffer.

Katie Boyce:

At that point, you know, so say you're going to somewhere and you're getting a pelvic ultrasound and it's normal. Now we have such better technology with imaging that there are there are doctors out there, that can they're better trained in how to evaluate or conduct those. So a lot of these like experts in imaging with, especially with ultrasound, they do the ultrasound themselves rather than sending you to a tech. Right? So that is at the point where then they get to just like how a surgeon, you know, gets the experience and knowing what to pick up on those little subtle hints. These individuals that have, like, spent their careers dedicated to looking at imaging of endometriosis, they know how to use their tool to really get a better idea of what's going on. So pelvic ultrasound can definitely play a role. Pelvic ultrasound, even in the hands of somebody less experienced, can find massive issues. Like, you have a huge endometrioma.

Katie Boyce:

You've got serious bowel disease. That kind of thing can be picked up. That's more of the traditional understanding of what can be seen on ultrasound. We do know that if there is a presence of endometrioma, there's a high likelihood of there also being deeply infiltrating endometriosis. So in an ideal world, if a doctor saw that, they refer. Unfortunately, most don't even know that is a relationship. We also have MRIs. MRIs, again, they're going to be better for the deep disease, like the bowel disease we're looking at.

Katie Boyce:

Sometimes it can be helpful for, indicative of thoracic endometriosis, really looking at the the diaphragm. But again, when it comes to that with the MRI, that is typically best suited just for surgical planning. Right? So okay. They know they're going to go in and operate, but let's do additional imaging so we can plan it or they call mapping the disease. And, again, it depends on who it's in the hands of. I told you I recently had a spine surgery. My spine surgeon didn't care what the radiographer, like, what the radiology report said. He wanted to look at it himself.

Katie Boyce:

So you'll see that with a lot of these experts. And so if an individual is diagnosed that way, then, yeah, that is that's totally a legitimate diagnosis. Right? I do meet people in the community that feel like they don't have real endometriosis because, or have a real diagnosis because they didn't have surgery. Fortunately, there are instances where we can diagnose it without. The issue though also lies in, you know, of course, who's reviewing the imaging, But think of it again like cancer. We may see it on a on a scan, but they are still going to go in and take a biopsy. Right? Because they still need to know what they're dealing with. And it's very similar with endometriosis.

Katie Boyce:

We can do all of the noninvasive, but what is the end goal? Right. And of course that's patient driven. Maybe they're okay with birth control or whatever, but it's important to recognize that these noninvasive measures, they still need to have a goal in mind. Typically the detailed imaging is going to be for surgical planning. Now we've got, you know, the for, like, infertility suspect the suspicions, unexplained infertility. You know, there's the Recyptiva test. So it's like a biopsy of the endometrial lining, and that looks for a specific marker that can correlate sometimes to individuals' endometriosis. It's not a definitive diagnosis.

Katie Boyce:

Right? And it's not going to pick up all types of endometriosis, but it can hint toward there's something inflammatory going on here. Right? And that's the thing with endometriosis. That's why they're always looking at these inflammatory markers, the the c a 125. Unfortunately, you know, people say, well, if that's elevated, it's endometriosis. Well, that marker can be elevated with any inflammatory disease. You could have Crohn's disease, and that marker can be elevated. So it's not necessarily something you would use to diagnose it, but these are things that you can do as a whole to get a big picture. Right? Okay.

Katie Boyce:

You've got something inflammatory going on. You're experiencing infertility. That's indicative in itself, or maybe there's no infertility, but, you know, this we did this advanced ultrasound that's showing a lot of abnormalities. You know? And then we're looking at this whole picture. And then the doctor can say, you know, I this is really indicative of endometriosis. So everybody we've talked about this. We want a noninvasive diagnostic. Right? That's the the end goal, but there still needs to be a plan.

Katie Boyce:

Right? And currently, we don't have a plan for once there is a noninvasive diagnosis.

Georgie Kovacs:

How does someone know? Like, I guess, the patient I'm thinking of is the patient who is struggling to get an answer. And so you walked us through, like, the tools that are available to have the diagnosis. And it seems like, you know, there are certain, you know, types of doctors who can you know, like, some, green flags, so to speak, that you shared, like the doctor who does the pelvic ultrasound himself or herself, etcetera. So why do people struggle with the diagnosis? Like, what what is going on there?

Katie Boyce:

Because at the end of the day, endometriosis is just so variable. Right? And no imaging can pick up superficial superficial endometriosis, which means it's not a certain depth beneath the tissue. So we don't have imaging that can pick that up. Right? There there's, like, 1 individual saying that they can with their test. Maybe in the future, but currently as it stands, no. So what we're getting are patients that are still suffering without a diagnosis, because it's not being able to be picked up. That's why everyone wants the noninvasive biomarker. And so they're falling through the cracks.

Katie Boyce:

Because then we do need to have surgery for that definitive diagnosis. Right? So it's it's tough because that's when that biopsy is so important. Because even if you do go in and have surgery with your regular OB GYN and they're like, well, we didn't see anything. That doesn't mean anything either. Right? Because who knows if they even know what they're looking for. Endometriosis sometimes hides. You know? Sometimes endometriosis isn't a something called, like there's these things called peritoneal pockets. They're little pockets.

Katie Boyce:

And unless the surgeon goes in and takes it and pulls it out and looks, they're gonna miss the endometriosis. Like, that's how horrible this disease is. And we know that the amount of disease doesn't correlate with the amount of pain. So maybe there's this patient that is having so much pain. Their imaging is fine. They go to their OBGYN and have surgery. This they say there's nothing there. But what if and there's a video of a surgeon that's had this experience.

Katie Boyce:

They finally got this patient, and they found one of those little pockets. And they removed the endo there, and it was really related to the area where that patient was experiencing the pain. So that's why it's so, you know, complicated. So even if you go to an OB GYN and you have a diagnostic laparoscopy, they could still miss it. And that's where your that's where you'll hear the the pushback lately where it's like, we need to get rid of a diagnostic laparoscopy. And in a lot of ways, I agree with that because we need to have we need to stop letting just any old doctor open up patients because it is it is a recipe for disaster. But a diagnostic laparoscopy done by an expert who is pretty sure that you already have it, they're not just diagnosing at that time. They're going in to diagnose, but they're also going in to treat, and that's the difference between those 2 types of diagnostic laparoscopies.

Katie Boyce:

And so it it's just that's the unfortunate reality is that there are going to be people who are still falling through the cracks because of this. And in a perfect world, an OB GYN would refer to an endometriosis surgeon. My ultimate when I say these things, though, I want I say these so that patients don't feel too discouraged. My imaging is clear. My OB GYN didn't even find anything during surgery. That doesn't necessarily mean that you don't still have something there that can be investigated.

Georgie Kovacs:

So there are some diagnostics that there's lots of press about. And, you know, we've kind of been alluding that there's a lot of money that can be spent to say a lot of wonderful things. We want to make sure people understand what's really ahead. I mean, first of all, I just wanna say, the way I look at this, I I'll give the example to to with menopause. There are some consumer products that I'm like, seriously, I can't believe you created this. Like, some of the face creams. I mean, I haven't done the scientific research on it, but I'm kinda like, I know enough to know, like, seriously, there's, like, special face cream we need. I mean, probably, like, for its more moisturizing.

Georgie Kovacs:

Okay. Fine. But, like, some magical cure, I I don't understand all that. However, by them being on the shelves, the conversation is there, and women, hopefully, will feel a little bit less dismissed. Right? So, now back to endometriosis. And, of course, there's the downside of misinformation. But, again, we are all here to educate and give the right information. But with Indu, I will say, like, the noise is finally where it needed to be, But now we're kind of like, okay.

Georgie Kovacs:

What's the correct noise to be listening to? So I'd love to to get your perspective on on some of the things that are out there. And I don't know how much we wanna discuss companies, whatever you're comfortable with, but would love to have your thoughts.

Katie Boyce:

There is, like you said, this this massive push. You know? Everybody wants to be the 1st to do this. And so I like to frame it like this. Yes. There's a lot of work going on. Yes. It can be exciting. But we have to remember that this is ultimately a huge cash cow.

Katie Boyce:

Huge. This will be the first noninvasive diagnosis for endometriosis. So you have a gold rush right now. Right? And as much as I want to say, oh, they really just care about us. You we have to remember that there is a bottom line here. And that bottom line is this is a gold rush, and it can work to our advantage. You know? People are interested. They're trying.

Katie Boyce:

But it can also be detrimental by trying to push something forward that isn't there yet. Push something forward as amazing and, you know, sexy, but it's going to cost the consumer a lot of money. And so as chronic illness patients, infertility patients, we spend an enormous amount of money already on our health care. And And so I'm always trying to find out, is this even cost effective? Right? Because I know a lot of these tests and a lot of these providers, you know, are having patients do things that are incredibly expensive. And so if I meet somebody that's got the disposable income and they wanna do everything, totally get it. But then I have the people coming to me saying, do I really need to be doing this? Because I can't afford it. I'm like, well, let's talk it through, you know, pros and cons. So that's how I like to frame the discussion with these biotech companies coming out with these tests.

Katie Boyce:

And because it is that gold rush, that's why we'll get a lot of these sensational headlines. Right? Everyone wants to be the first. Everyone wants to be the 1st journal to cover it. And, you know, that's why we get it's so sensational. And that's why we have to take a step back as a consumer, because ultimately we we are and say, okay. What are we actually looking at here? So when I when I someone will send me there's this new test. Okay. Cool.

Katie Boyce:

Like, let's look into it. I then I'll look at the the research into it. I find out who the investors are. I find out the scientist on it. I find out if they have any relationship with endometriosis at all. Have they been around? Do they have a reputation? And then I will I'll look at the data. Okay. So what are they doing? What is the procedure? And what are the preliminary outcomes of that? And so we can start to dig into it that way.

Katie Boyce:

Sometimes what I'll see one of the most popular ones that I think there was the Dot Lab one that's been around forever. I think that was the one trying to base the test on menstrual blood or something like that. Just right off the bat, what about individuals that don't have a period? What about individuals that have had a hysterectomy? Right? So we know a lot of people who've had hysterectomies unnecessarily and still struggle with endometriosis. So there's just right off the bat some interesting flaws, but then we also know that the tissue's not even the same. Right? So I it's just like we're thinking about this, and we're like, how, you know and then you look into the data, and it's not there. And that's why some of these things have been in the periphery for so many years that have not come to fruition. You know? So we see a lot of that. And then some of these now are like, okay.

Katie Boyce:

Well, maybe we can just take a simp a sample of the uterine lining. Okay? We already have, you know, the 1, the receptiva for looking at an inflammatory marker that can kinda hint at it. But these other markers, when you look at the markers themselves that they're looking for, they're not always so they're looking at tissue, right, that isn't even endometriosis. We do know that patients with endometriosis can sometimes have variations in their endometrium. We don't know if it's caught what what's causing chicken and the egg. Right? We don't know if the uterine lining is different in some ways from a healthy uterine lining because of the endometriosis. That would make sense to me if we're born with it, but maybe the uterine lining is defective for some other reason with someone with endometriosis. So that's what the basis of let's let's test the enemy the level lining of the uterus.

Katie Boyce:

So they're looking for that, but that's itself not like, there's no there's no, like, solid foundation there whatsoever. So we're already, like, starting on rocky ground, and then they're looking for certain inflammatory markers. But like I've said before, some of these markers, they can they can be associated with a variety of different conditions. Right? Like I was saying with the c a 125, any inflammatory condition. There's 1 company right now looking for one that they're coming out with their test. They're saying it's gonna work. They're looking for something called BDNF. That is actually commonly found with various psychiatric disorders.

Katie Boyce:

So okay. That's interesting. And I looked into this one in particular even more. I pulled up the patent. Love to do that. And I'm looking at it. I'm looking at the methods, and I'm like, they're saying that the individuals with endometriosis have an elevated BDNF. Right? And, they're saying the ones without endometriosis don't.

Katie Boyce:

And I was like, okay. Well, how many patients? It was, like, not even a 100 patients, but like we said before, that doesn't necessarily mean it's not worthy of investigating, so I looked even further. The endometriosis patient group that was the no endometriosis, they don't even they didn't do surgery on them if they didn't have symptoms.

Georgie Kovacs:

So how do we even know they didn't have endometriosis? It I know it's funny because when I the 1st conference that I ever went to about endometriosis, which was obviously soon after I discovered I had it, they were talking about how these studies are hard because you basically have to do surgery on everyone to just make sure they don't have it if you really wanna do the study right.

Katie Boyce:

And even worse, you have to look at who the surgeon was doing it. So this study, I know the surgeon that was doing it and this surgeon does maybe 4 surgeries a month on endometriosis patients. This is how complex this disease is. I can't guarantee that even that surgeon that did it, if they had done it and had they done the surgery, I wouldn't even be confident in saying they found it all. Right?

Georgie Kovacs:

So there is a study that came out from a group in France. Right? Was that the one that they were doing, the saliva testing? Yes. Yes. Yeah. There seems to be some hope there. What what do you think about that one?

Katie Boyce:

Yeah. I love this one because this is an example of me being humbled, and this is science. When it first came out, the sensational news around it a couple years ago, I looked at it, and I was like, this is this is bogus. The data wasn't good. It was looking sketch. And I know that's not a very, like, professional word, but that's kinda how I was looking at it. I'm like, this is suspect. And, you know, everyone was excited about it, and I did a review on it.

Katie Boyce:

And then here it is a few years later. I was looking into it again. It hasn't been in the news. It's funny how this always works. The I feel like the newsworthy stuff is never in the news. So I'm looking at it again, and I'm looking at their data, and they're working they're taking they're looking at blood now. And I went, wow. They have made a lot of progress, and they've shifted the way that they're looking at their diagnostic for it.

Katie Boyce:

So everyone's looking for a biomarker. Right? And I'm always saying, there's a reason that we don't have a overall biomarker for cancer. Right? It's too complicated. We're never going to have and I will knock on I mean, I would probably bet money. We're never gonna have a 1 single biomarker for endometriosis. Exactly. Too complicated. But what they've done, this company, is they've now developed a signature, which means they're putting a collection of biomarkers and genetic changes together, and they're seeing a whole signature.

Katie Boyce:

It's a bigger picture. And that really made me raise my eyebrow, and I went, oh, they're getting somewhere because now they're seeing it is a collection of changes that when you see these things add up together, just as you would in the clinic, they've got this pain here. They've got this here, this here. It's like looking at a symptom profile, but through the blood. That is really promising, and I'm excited to see what comes of that.

Georgie Kovacs:

Real quick. When you said blood, before we had talked about period blood not being great because of so just to clarify which blood, just to close the loop on that in case anyone's wondering.

Katie Boyce:

The blood that you get from a blood draw out of your vein. That one. If you have the marker, you likely have endo. It is a 100% not a diagnostic. Like, it is an indicator. Is that sufficient for now with what we have? I I personally wouldn't say so. Right? Because a lot of these indicators are no better than what a clin a good clinician is able to get from a good interview with a patient.

Katie Boyce:

Right? Because these wonderful the experts or the individuals really experienced with endometriosis, they're gonna know. And I know that they're making these tests to target to sell to the regular OB GYN who may not know how to pick up on those. Right? And that's the point. Yeah. And so, you know, it's one of those things. It's like, that's how is that to me? I look at that and I say, well, how is it different than a nonexperienced technician doing an ultrasound. Right? So maybe there's maybe there is good data there. Maybe the it is in the imaging.

Katie Boyce:

Maybe there is something in the test, but who's evaluating it at that point? Or who's able to take the whole picture together? Right? And I'm I'm one of those people that always wanted as much data on myself as possible. Right? Like, if there was a test, give it to me. I wanna know. And so I completely empathize with those who are the same way. You know? They're like, oh, my doctor has this available. I wanna do it. I totally understand. And if you have the money to do it, I get that as well.

Katie Boyce:

So for me, it'd be one of those things where it's like, sure. Let's, you know, get as much information about your body as you want, and then look at it as a whole. Right? And so when I if I work with a patient like that, I'd be like, well, let's find you a provider that's gonna look at you as a whole and take all these clues and put it together. If you can't afford it, I really don't think anyone's missing out on anything. So we talked about surgery, but there is other other treatments out there. I do like to start this conversation by saying we are symptom management currently with medications. Right? So I always try to remind people there's a difference between treating and symptom management. When you have a viral infection, you are treating the symptoms when you're taking the the cold medicine.

Katie Boyce:

Right? We're not able to treat the virus itself. We're managing the symptoms. And so with endometriosis, it's very, very similar. The only treatment we have is the proper cutting out of the disease. Right? That is the only time that we've ever been able to look through a clinical trial and say, oh, we cut it out here in x amount of patients. It didn't come back here. Right? That's the only time we've ever been able to see that. And so that's why we say the gold standard of treatment, you know, is excision of endometriosis.

Katie Boyce:

Doesn't mean it's a cure, but it's the only treatment. Everything else we have is symptom management. Even burning superficial lesions can just be symptom management. And so that's why I like to preface it's not necessarily treatment, but we're managing how we can. And so, you know, the first line of treatment for everybody when you go to the doctor, they're like, okay. Well, we're gonna treat your endometriosis. We're gonna put you on birth control. So a lot of the times they'll do this before even a diagnosis.

Katie Boyce:

Right? They just kind of say, well, you've got these symptoms. It could be x y z. There's no reason to rush into surgery. We'll just do birth control and see if it helps. That's not necessarily wrong. Right? An ideal world, patients referred to an endometriosis surgeon. We don't have access to that. And maybe some patients go on and live happily ever after feeling okay on birth control.

Katie Boyce:

Right? Sometimes patients have to try a few different types of birth control and they're okay with that. And I've met a lot of people who were okay with that, but it isn't for everybody. We forget that birth control is a medication. Feel like a lot of people are just like I've talked to so many doctors that tell me they have to explicitly ask their patients if they're on birth control because they'll just not say it. Are you taking any medications? And they'll say, no. And they're like, are you on birth control? And, you know, it is a medication. And the premise of that why why birth control is the first line. It's because we know birth control can help with period pain and it is disrupting the cycle.

Katie Boyce:

It's working on the ovaries. Right? So it's telling the ovaries. Alright. Let's down regulate a little bit. Let's calm this whole system down. And then, you know, you have less of that inflammatory response that comes with the with the menstrual cycle, and it kinda just keeps things level. But as we know, endometriosis isn't going to just respond because you're doing something to the ovaries. So a lot of patients don't have relief.

Katie Boyce:

You know, you get patients that are like, it's not working for me. And I think it's important to recognize that a lot of us can't take birth control because of psychiatric side effects. I was one of those. I tried a few different kinds. It really messed me up. And so that wasn't for me. Sometimes they'll try, you know, just basic nonsteroidal anti inflammatories because it's an inflammatory disease. It can work.

Katie Boyce:

I was on a really strong one that eventually was taken off the market. It worked for me, so it sucked when it took it off the market. But I'm grateful they took it off the market. Right? It was for my safety. And so that's kinda like your first line. And And then say it's not working. A doctor may say, well, let's take birth control continuously. Right? So you're never having a week without it.

Katie Boyce:

And so maybe that helps because it's a little bit of a more intense suppression, but it doesn't mean the endometriosis is gone. Right? It just might be helping with some of the inflammation. So then say that doesn't work, then they go up their list. Right? And they'll say, well, let's try something stronger. And they, at that point, they might say, well, there's this new drug, newer called ORILISSA. And this is when we're getting into the GnRH drugs. And GnRH, gonadotropin releasing hormone, is a natural hormone in our bodies. It is what actually controls our cycle completely and it's in the brain and it communicates with our ovaries and says okay this is what we're gonna do.

Katie Boyce:

So when we take a drug that targets that, it's targeting it in the brain. Right? And so we're no longer just saying, hey, brain, let's calm down the ovaries a little bit. We're saying, hey, brain, let's shut the ovaries off completely. And so originally, everyone, for the most part, seems to be familiar with Lupron. Lupron, you know, it's an injection, and it's a long lasting injection. And the way it works, it's called an agonist. And an agonist, it's going to go in and it it binds to your GnRH receptor in your brain. And the brain goes, oh, okay.

Katie Boyce:

I guess I need to make more estrogen because that's what initially happens to our body when it's like, we need estrogen. The GnRH comes in and binds the receptor in the body. So let's make estrogen. We're taking Lupron to stop the estrogen. However, the body is incredibly intelligent, and it will always overcome anything it's given. So what does the body do? The body starts to get rid of the receptors because it's been flooded. So then there's no more, and the body all of a sudden says, okay. So there's too much estrogen, and the body's like, this is bad.

Katie Boyce:

We have too much estrogen, but the the receptors are already you know, the receptors are triggered the way they are supposed to be triggered. What's going on? So the body just overrides and shuts down. The body just overrides it. The brain says, nope. We're done. So then the ovary shut down completely. Right? So this is actually a phenomenon that they call a tumor flare at the beginning because Lupron was originally made for prostate cancer. And so when they inject it into these men with prostate cancer, they originally would have all of these horrible side effects because the tumor was flaring.

Katie Boyce:

Right? It was, too much estrogen. But then when you stay out long term, it goes down. And it's the same for us with endometriosis. Right? The ovaries overstimulate tons of estrogen. The body goes, woah. There's too much estrogen. Let's just override and shut it all down until, know and the the ultimate the hope is that when the loop rod injection wears off, the ovaries go back. Unfortunately, we don't really have we don't have any long term data showing that everyone's ovarian function comes back, and that's one of the biggest issues with Lupron.

Katie Boyce:

And the ultimate goal is we don't want to kill our ovaries for the rest of our lives. Right? We need our ovaries. So here's the deal with that. So we don't know for sure if everyone's ovarian function's gonna come back. We know that because it's shutting our ovaries down, we are not getting the proper amount of estrogen, and we're having significant bone loss. We see it in the trials. We do see in the trials after a while, some individuals regain their bone mass that they lost, which is great, but not everybody. And because these side effects are so intense, the FDA has regulated the FDA has stated that Lupron should never be given for more than 12 months total in someone's lifetime, and that is only if there is something called add back.

Katie Boyce:

So if you're just getting straight Lupron injection, FDA says no more than 6 months in someone's entire lifetime. No more. If the provider says that that patient needs to be on it for longer, like a year, they are allowed to do that as long as they are giving that patient some add back hormone. So progesterone, estrogen, something to give the body a little bit, but no more than that. And I can't tell you how many patients don't even know that.

Georgie Kovacs:

How many doctors know that? Can I just ask you that? How many doctors know that?

Katie Boyce:

The only only a few that I talk to or what they do, and this is common. They say, well, we're allowed to use it off label however we want. I said, you are? That's true. I take a medication that's technically off label every day. But my doctor and I went through the black box warning. My doctor and I went through it. I went through the literature with my doctor. Right? These doctors aren't doing that with these patients.

Katie Boyce:

And I I will say that as I will say that the way I'm saying it. Right? I have yet to meet a patient whose doctor has ever fully gone through the risks of that medication that didn't also offer another option. Like, we can do proper excision or if you wanna do this. It's always been presented as, well, this is the next step. And, unfortunately, when you look at the literature as well, they'll try to say, oh, it shrinks endometriosis lesions. And they'll say, well, we did a clinical trial. What they're doing when you look at the data on those trials is how did I I've already said estrogen impacts inflammation. If you increase estrogen, you can have more inflammation around those lesions.

Katie Boyce:

If you decrease estrogen, you can have less inflammation. That doesn't mean the lesion's gone. It just means the lesion is less noticeable. So what they do when they're doing these 2nd look surgeries, they put a patient on Lupron, and then they'll go and do a surgery and say, well, the lesion shrunk by x amount. What they're doing is they're literally using a measuring tool, and they're just measuring the, you know, the size, the visible size of the lesion. And they're saying, well, it shrunk. No. The inflammation around the lesion may have decreased.

Katie Boyce:

And we know for a fact when these patients, because they go to have surgery later, the lesions just reinflain as soon as they're off. So that's why it's, like, it's not a long term treatment because so say you take it for the full year that you're maxed. What's the goal after that? Because we know that the it's not actually eradicating the disease. However, a lot of providers don't actually know that. They're just told, well, look at this trial data it shows. Right? And I don't necessarily fault the doctors for that because we've had this discussion. They're busy. Right? They're busy.

Katie Boyce:

They're working with patients. They're relying on industry to give them the facts. But the unfortunate reality is that there's so much more to those facts than, you know, what's just being shown on a on a pretty picture. And then we've talked about this is why digging through the data is so critical. And so it just drives me a little bit wild that patients are being presented with Lupron as a way, you know, oh, it's a really strong drug, but it's gonna clear up your endo. You know? And then they're dismissed after that. And it is so intense with its ability to it just it can reduce the inflammation so much that this is interesting. Some surgeons will actually have they'll want the patient off of any hormone suppression for a while before surgery, particularly if they've been on Lupron.

Katie Boyce:

I've spoken to quite a few pay doctors who will actually put the patient on just straight estrogen before to reinflain the lesions that were never gone to make sure that nothing is missed. Right? And I like yes. And it scares patients because it's like, oh my god. This is gonna be so painful. And it's like, yeah. It is. You know? This is definitely when it comes down to, is this something you really wanna do? Because they're like, well, I've been on Lupron for 2 years. Right? I'm can't imagine.

Katie Boyce:

And they're like, so I'm worried that some of my endometriosis may not be visible and but it's still there. So then they can work with their doctor and say, let's just give you some straight estrogen and inflame everything. And that way, they can see it all. Right? Because, again, the Lupron never got rid of it. So that's something that's really fascinating in one of the ways that we understand how estrogen can impact the inflammation around, you know, the lesions. And not all of it, but some of those. And so I wanna move on to ORILISSA. So why ORILISSA was developed is because everyone wants a pill rather than an injection.

Katie Boyce:

Lupron is scary because you can't stop it once you get your injection, and it's got that initial beginning. It takes a while for it to work. So when they made ORILISSA, it is called a GnRH antagonist. So what it does is it blocks the receptors in a different way so that it's not connecting to the receptor, it's just blocking the receptor so you have an immediate response. The body is not saying, oh, we need to make estrogen. The body is saying, oh, okay. I guess we definitely don't need any estrogen. There's nowhere to bind.

Katie Boyce:

And so and when I say bind, I mean nowhere for the the the hormone and the receptor to come together in the brain. It's blocked, so the body just says, okay. No more estrogen. And that way it's an immediate effect rather than waiting for the body to down regulate. And that was one of the biggest selling points for ORLYSA. It's like no waiting time. You know, it works immediately. You can just stop it whenever you want.

Katie Boyce:

Unfortunately, it still works the same by inducing menopause, right? So, you're you're no longer making estrogen. It is technically they've approved it I think for like 2 years and but the problem is that it hasn't done well because patients it's the same thing. Right? It's the same side effect profile. There's still bone loss. It it seems to have worse psychiatric effects. Somebody in if you wanna do a trigger warning for this, this is a trigger warning. Somebody in the clinical trial for Alyssa did commit suicide, and I've spoken to so many patients that have this specific, suicidal ideation that is a serious problem with Alyssa. So it's an option if somebody wants to try it, but it's not an answer, you know, a long term answer.

Katie Boyce:

Because once again, what are we doing for that patient long term? So even if the FDA has approved it for 2 years, then what is the long term goal? Right? And so I look at these drugs. They're very they're very intense, and I think they need to be presented with how intense they are. But I also understand that there are patients who've been able to get 2 years of their life back Right. Because of it. You know? And so when someone talks to me, you're like, I have to take this drug. I can't access a surgeon. I say, okay. You've been informed.

Katie Boyce:

You know the risks. And they're like, but what can I do? I'm like, well, you know what? Let's maybe you can find a provider that can work with you in other ways, like making sure that you're supporting your bone health, you know, like, things that you can do that are in your control to better support your body while on such a harsh medication. I think that's a real I personally feel like that's a good way to look at it. You know? Like, okay. I have to take this because I meet so many who message me terrified. I have to take this or this is the only thing working for me right now, and I'm a single mom or I have to finish college. I am desperate. And I say, you know what? I'm no judgment from me because I understand that we have to do what we have to do to survive.

Katie Boyce:

I wanna stand on a soapbox and say, none of these drugs. Nobody take them. They're horrible. Right? That's what I wanna do because I worry about everyone's health, but it's not my decision. But what I can do is make sure patients are empowered with all of the information. Okay. They can say to their doctor, well, what is our goal after? Well, I read this, and the FDA says no longer than a year without additional hormones. And they if your doctor dismisses that, that's a red flag.

Katie Boyce:

Right? If they say, listen. You know what? You're right, but this is what I think, and work together, that's a whole different story because drugs are legally allowed to be used off label. I don't want anyone to think that these doctors are doing anything illegal. It is totally illegal to use a medication off label. So, you know, it's important for people to know that. It's just know if you're using it off label.

Georgie Kovacs:

And then just a quick question just in case people ask because my fembray is a newer one. So I guess, is there any new information that someone should be aware of, or is this more of just similar discussions with their doctor? Is there a nuance with this medication that someone should be aware of?

Katie Boyce:

So the nuance is that these medications have been in trials for a long time. All this is is ORLYSA with the add back built in. That's all it is. So instead of having to take 2 pills, right, the ORLYSA and the hormone add back, they're just putting it together because we know and they know, we all know you need some of that hormone in there. And so what it can do is lessen the side effect profile, but it still doesn't change the fact that there are still limits on how long we could take the drug. It's actually the drug is, I guess, just more convenient because it's already together with the add back hormone. But you know? And talk about with the doctor.

Georgie Kovacs:

What what is going on with endo and infertility?

Katie Boyce:

What seems to be the issue and, of course, you know, there's unexplained infertility. Who knows what that even means? That's like being told you have IBS. What does that even mean? And, you know, there's ways that they can look at it. And what we do know and there's a whole group of doctors that do napro surgery, meaning their whole they don't do IVF at all. Their whole practice is based upon correcting any sort of, abnormalities physically, internally, and making sure there's no endometriosis or any other condition that could be causing inflammation. So that whole premise of the issue with endometriosis and infertility, one, it could be due to the fact that endometriosis can distort organs. Right? It can create these adhesions and scar tissue, and it can distort organs so that they're not properly functioning. And another way is that just the presence of the disease itself could be causing enough of an inflammatory environment to prevent natural, fertilization.

Katie Boyce:

Right? It gets complicated when you've got patients who are able to get pregnant but not stay pregnant. Right? Then it starts getting into a whole different, you know, realm of, reproductive immunology. But as for the endometriosis, you know, where we're looking at it, those are the 2 big things that we seem to see. Is it the disease causing some form of inflammatory process where it's just saying no? You know, we're not gonna fertilize because of this? Or is it maybe there is a actual physical, disruption in the anatomy that needs to be corrected that's been caused by adhesions or scar tissue. Maybe it's both. Right? So that's why a lot of people tend to have success with becoming pregnant after they have a successful surgery to remove endometriosis. Sometimes they'll have it, but maybe there's endometriosis left behind that could still be causing You know? So that gets complicated as well. Maybe you need to get a second opinion with another surgeon.

Georgie Kovacs:

If I may ask your hysterectomy, what I want people to, I guess, take away is sometimes people have to have them, and it sucks. We shouldn't blame ourselves, and it just may have to be the thing that has to happen. And I guess why I wanted to ask you is you are so incredibly data driven, and this is something that had to happen. Now I don't know the details and whatever you're comfortable sharing, but I guess it's such an interesting, you know, journey where you're the researcher, and that's the path that you had

Katie Boyce:

to take for your body. I wanted my hysterectomy. All I knew is that I wanted to be a scientist. I wanted to go to school. I had all these dreams, and I couldn't continue to live a life where it my life was controlled by my menstrual cycle. This is where it gets really important to distinguish between endometriosis and any kind of uterine condition. Endometriosis coexists with adenomyosis quite frequently. Right? And that is an actual disease of the uterus.

Katie Boyce:

Symptoms can overlap. This is why some patients will end up with a hysterectomy thinking it's gonna cure their endo, and they'll have pain relief. Well, maybe they also had adenomyosis or maybe there was another thing occurring with the enemy with the uterine lining or in the of the uterus that was causing most of their symptoms. And so that's why, you know, it's a tricky subject because people say, well, my hysterectomy cured my endo. No doubt that it improved their quality of life, but who knows if it was really just a a uterine condition that was causing the primary symptoms there. So for me, when I went down this journey, I didn't know about adenomyosis. I didn't know about endometriosis. All I knew was that I had all of this pain all of the time that got worse when I had my period, right, to the point of I would pass out and I would have a seizure.

Katie Boyce:

My family knew if we call 911, the paramedics knew to give me exactly 10 micrograms of Fentanyl to bring me out. Nothing else worked. So I had a plan, and I was like, I'm not doing this anymore. Right? So that's why I said I'm getting the hysterectomy, and I'm gonna just take this however it needs to come. What I what I see a lot of is, you know, there's that misinformation that old school doctors will say the hysterectomy will clear your endo. So I don't want patients to ever feel pressured into a hysterectomy because a hysterectomy is not going to remove the endometriosis lesions elsewhere. But what does happen with endometriosis over time is if you are getting a lot of that scar tissue, you are getting a lot of the adhesions, things like to attach to the uterus, or the uterus likes to attach to things. Right? So a lot of us will have the uterus attached to our sigmoid colon, the descending part of our colon.

Katie Boyce:

And then, you know, it in it's it's inflamed. We have really painful bowel movements, and it may not actually be like endometriosis necessarily. It could be just the fact that it's adhered. And our uterus can get distorted. And just as this disease seems to take over, it just it causes everything in its path to become a problem. So that's an instance where someone may say, I'm going to have a hysterectomy because, no, it's not gonna cure the endo, but my endometriosis has created such a chaotic environment that now my uterus is involved. And so then it makes sense. And as long as the patient's making that informed decision, it makes sense.

Katie Boyce:

Because I do get really sad when I see other patients say, well, your hysterectomy didn't treat your endo. Like, no. We need to be saying to each other, is your quality of life improved? That is the ultimate goal. And a lot of I speak to a lot of individuals who didn't even know a hysterectomy would be an option because a lot I feel like this is somewhat cultural. They're like, well, I have to have a family. I can't consider a hysterectomy. I said, okay, but let's dig deep. You know, what do you really want? You know? Because they'll be like, oh, I hate this.

Katie Boyce:

I don't want I can't wait to they'll be like, I can't wait to have a hysterectomy. I'm like, well, that's kind of an interesting thing to say because what are we waiting on? If you wanna wait for health reasons because everything comes with risks, I get it. But some don't even know that it's technically an option. Right? I meet so many who are like, but I have to keep this organ. I have to have a family. And then that sucks if they're and then it's really unfortunate if they're experiencing infertility. It is a conversation that I don't think is necessarily had because everyone's afraid to have that discussion. Like you were saying, sometimes the hysterectomy is going to work for us.

Katie Boyce:

And I like people to know that they can come to my DMs, and we can have that tough discussion. There is some data out there that says your life may be shorter by 5 years if you have a hysterectomy. Is that worth it to you? I've had multiple people say, well, yeah. I what what? It's 5 years, but I'm gonna have a quality of life. So, again, we're going to look at the pros and cons. We're gonna look at yeah. There are cons to it. For me, that's what I looked at.

Katie Boyce:

Right? What are the health effects of having a hysterectomy young? Okay. To me, that's like when you say someone has to be on Lupron, same thing. So I have to do this necessary evil. What can I do to improve my health in every other way? Right? Had the hysterectomy. I had to have an ovary removed. It was tough. No one prepares you for the hormone changes that aren't natural. And so for me, that looked like finding the right hormone support and care.

Katie Boyce:

So I guess that's a long winded way of saying we have to make, again, as always, the right health care decision for ourself, know the pros and cons. But also with the hysterectomy, it gets real complicated because there's a lot of stigma around having 1 and not having 1.

Georgie Kovacs:

Here's what I I hope is my my knowledge of the endometriosis community and, really, once people get into this, like, I have something I can't solve, and I'm gonna start being my own advocate, is all of this information will make sense and is important. Because without the diagnostic cure treatment clarity where it's like, you know, broken arm, get cast, until we get to that point, given the complexity of this, all we have is the power of information and a two way conversation with our clinicians. Full stop. I feel so honored that someone said this is who you have to talk to because they were right. You're incredible, and thank you, truly.

Katie Boyce:

Thank you for your kind words. Yeah. And I I I appreciate that. You know, I don't always I don't know why I guess I'm here because I just I lived it and I understand a lot of people, they're able to get great care and move on with their lives. My sister is one of them. Don't talk about her often. We went to the same surgeon, and she she left Endo behind. She was able to do it.

Katie Boyce:

And does is she cured? I don't know. Maybe we're always like, maybe there's a speck of Endo somewhere in there, but it's not causing her symptoms. She's fine. Right? And I applaud anyone who's able to step away and restart their life. For some reason, I am not one of those. I just stuck around. And I'm just, like, I I just I guess I'm angry. That might probably fuel some of my passion because I continue to see that nothing has changed.

Katie Boyce:

And so a lot of people get discouraged when they hear all of this, And I say, you know, it's not to feel like you have no options. It's to know that the options that you maybe you're only presented with 2 options. My goal is to make sure that you know there may be more. Another little thing on the horizon that I definitely wanted to bring up because very rarely does anything pique my interest. There's a potentially a drug in the pipeline that might actually be addressing the actual inflammation at the lesion site, and so that is really it's phase 2 clinical trial, which you and I know is relatively significant to even reach that in humans. I'm really excited for that one because it the the preliminary data is showing that there's no decrease in systemic estrogen levels, that there's no bone loss, and it's only working at the site of the lesion. No. It is not a cure.

Katie Boyce:

Right? But it is able to target the lesion and reduce the actual estrogen activity at the lesion, which hopefully, if you can take that so say that when I was 16 years old, I could have taken this instead of birth control. Maybe by reducing that local constant inflammatory process, it can reduce the impact of long term progression of adhesions and scar tissue and with a lesser side effect profile. So that's the ultimate goal. And I think that is a really great way to look at endometriosis right now rather than just go for the cure. Right? We need something in the interim for those who can't access surgery, for those who need to finish school. Okay. This is something that is showing to provide pain relief, and awesome enough, it's also reducing local inflammation. So, of course, trials have to continue to make sure it's safe.

Katie Boyce:

Right? We're gonna see if it really does work when it's pushed against the hard part of a clinical trial. So but it's interesting that why isn't that in the news. Right? I'm keep seeing the good stuff just isn't in the hands of the the popular people, And that seems to be you know, that's what gets the news. So

Georgie Kovacs:

You know, I will say, like, if it does work, that's amazing. And let's hope that the diagnostic pieces of it catch up quickly because, you know, the earlier it's diagnosed, the more possibilities there are. So thank you again. This was awesome.

Katie Boyce:

Thank you so much for having me. I really appreciate it.

Disclaimer

The information shared by Fempower Health is not medical advice but for informational purposes to enable you to have more effective conversations with your doctor.  Always talk to your doctor before making health-related decisions. Additionally, the views expressed by the Fempower Health podcast guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent.