In this episode, we are joined by Kate from Endo Girls Blog to discuss her personal story with endometriosis and how others can spot signs of the disease early on.
Endometriosis is a debilitating, full body, chronic, inflammatory condition that takes an average of ten years to diagnose. Many are told their symptoms are normal, so it flies under the diagnosis radar as it progressively worsens. By educating ourselves on the warning signs, we can begin to fight for a definitive diagnosis.
Today’s guest has an endo story that, unfortunately, many can relate to. We’re joined by board certified patient advocate, Kate from the Endo Girls Blog. Her website and Instagram account is a fantastic source for those who are undiagnosed or diagnosed with endometriosis and need support navigating the rocky path to relief.
In this episode, Kate shares many of the similar problems that others face in their journey but has a few unique aspects that have led her to where she is now. Kate shares the early signs of endo in her life, the first time she heard 'endometriosis' from an unexpected doctor, and what you can do to get on the path to healing, especially if you need an extra hand to help.
Lastly, we end on a fascinating high note: Curing blindness thanks to medical technology.
Thanks for listening, learning, and being you. And join us back here every Tuesday for all things uterus, in service to you, uterinekind.
Carol: It's not a luxury to utilize a patient advocate in today's healthcare environment. For many, they are the key to getting diagnosed and treated. I'm Carol Johnson, and this is Hello Uterus.
Today we have Kate from the Endo Girls blog joining. Talk about endometriosis and patient advocacy. Those living with complex and chronic conditions may benefit from having a patient advocate, especially if you can't easily access healthcare because of your location, finances and insurance. Or if you just feel that you are better suited to communicate with someone who's your advocate and then have them communicate on your behalf and and help navigate the complicated process of getting any healthcare really, but most certainly, gynecologic healthcare.
In this day and age, this is the person in your corner and today more than ever that's needed. So we are so grateful to have time with Kate. , but before we go there, Uterus in the news,
this is really just a heads up. By 2030, the number of OBGYNs in the US is projected to decrease from 50,850 to 47,490, while demand is projected to increase from 50,850, which you'll notice is the same number. As OB GYNs that we have today, I'll address that in a second. So from 50,850 to 50 2006 60, this is according to a report from the Department of Health and Human Services.
It's making matters worse with the repeal of Roe v. Wade OBGYNs are leaving states with restrictive laws that place their ability to do no harm in jeopardy. And the third blow is that because of the repeal of Roe v. Wade, most medical students are going to probably train in states that enable them to train on the full.
Gamut of gynecologic care. Whereas medical colleges and states where abortion is restricted, they will not be able to train in those services. So it complicates their ability to work in other states from the one that they've trained in. This is just a really bad situation, and I bring to your attention because it is so important that you have a backup.
So you have your gynecologist. Hopefully you have, if you're pregnant or delivering, you have your eye on an obstetrician that can support you through the obstetrics world, but have a backup gynecologist, someone who is there to care for. The complex conditions that impact the female body and the complicated organs that are so crucial to a stable and beneficial quality of life for females.
Have a backup gynecologist. It's going to get increasingly more difficult to access care, especially in states where gynecologic care is restricted by state regulations. So just a little heads up for you. We have to, we have to work together to support each other. And so that's what we're gonna do. And now we are going to be right back after this quick break with Kate, who as a patient advocate is literally there to support.
Follow the Uterine Kind team and me over on Instagram and TikTok at Uterine Kind.
It's endometriosis Awareness month and we are grateful to have time with Kate. One half of the Endo girls blog and an endo advocate and ally joining us today to talk about endometriosis and share her story living with endometriosis and tips for accelerating a diagnosis and navigating the chaotic world of treatment.
Special alert to parents. I really wanna talk to Kate about how she and her parents worked together so that you can get some information to help you because I can imagine. . It is upending and potentially terrifying to find out that your child has endometriosis. Kate and her blogging partner, Laura, have created a really safe place for accurate information on the blog and are so giving of their time to support those living with or suspecting endometriosis.
She's sharing that time with us today and we're so grateful to have her here. Welcome to Hello Uterus. Kate. Thank you. Thank you for having. Absolutely. So I wanted to start out with you sharing a bit of your story. Your story has an arc that's similar to a lot of people's stories, but you've got some unique things in your experience with endometriosis, including the fact that your sister also has endometriosis.
So I, I'm really excited. To have you share this story with our listeners and tell us a little bit about your experience starting with when you first had symptoms.
Kate: Thank you. So, you know, originally I used to think that my story was unique in how early I started to experience my symptoms, but. The longer I'm in this community and the more individuals I meet, I realize that this is actually a lot more common than I had realized.
I started my experiencing my symptoms, um, before I ever started my first period. I was about, I think about eight years old. , I was experiencing a lot of gastrointestinal symptoms that were really difficult for my family to figure out. I missed a lot of school just from, you know, first, second, third grade.
I did start developing breast, um, in third grade. So, you know, there was a lot of early development and there is some suspicion that endometriosis symptoms can start before the actual period begins. But during that, like prepubescent time, , and that's kind of when I started to enve my symptoms. But I didn't realize that those were endometriosis symptoms until much later.
So during that time, my parents were, you know, really doing the best that they could, trying to figure out, you know, was it something I was eating? Was it something I was drinking? My dad even went out of his way to do a whole home water filtration system in our house. I was seeing, you know, chiropractors, I was seeing everybody that my, you know, outside of the traditional medical realm as well.
So, um, we knew I was lactose intolerant, but that. Explaining why I was having the other types of stomach pain that I was experiencing. So, you know, as time went on, I, I did start my period young. They weren't initially painful, so there was really no correlation there. They didn't get painful until, until a few years later.
That's when they did start to get painful. But nothing was really lining up with like my gastrointestinal pain. I didn't see a gynecologist until probably, Sophomore year of high school, and by that time the pain, I had started to get pain with my periods, but my sister's eight years older than. And she, you know, she was just like, oh, I have painful periods also, I have to take a leave or Naproxen take this.
It'll help. And my mother was around, but she was really busy working. And so it was, you know, and it wasn't like I couldn't talk to her about this. It was just my sister was more accessible and she was younger, and it just was easier for her to tell me, you know, oh, I need to do this too. And. . That was the first time where it really became normalized for me to have that kind of pain.
Wow. Yeah. It wasn't like a systemic, people being like, oh, you're a woman. It was just, oh yeah, my sister's experiencing this also. She's like, I have to do this. So that's what we do. You know? It was just, okay. That's reality for us.
Carol: Right. It lines up with how our siblings coach us on so many other levels that there wouldn't be this normal.
Like, well, why is this considered normal? You know? Yeah,
Kate: absolutely. And you know, and it's. . She was in college getting in like in college at that time, and hers was starting to get worse. So she was starting to pay a little bit more attention to my symptoms as time went on. I did eventually do the whole, you know, I went to the doctor, the O B G Y N, and they said, oh, you have dys.
You know, that's just painful periods. Some girls have 'em. Some girls were allowed grow them, and they said, , they put me on a drug called Vioxx that's no longer on the market. So it was a type of non-steroidal anti-inflammatory. And it did help me quite a bit. Um, and a lot of my other like non-specific pains cuz I did start to develop, you know, joint pains as well.
And so I started getting, you know, looked out for various autoimmune diseases and the Vioxx really just helped calm down a lot of those symptoms. Unfortunately, it was pulled off the market. Well, fortunately, because it did need to come off the market, but unfortunately, because that was the only thing that was working for me.
And so I had to go back to the ob gyn and that's when they, um, decided to put me on, you know, a low dose estrogen, oral contraceptive. And so it was combined pills. So I took that and I didn't have success with any of the different birth controls that they placed me on. , they made me incredibly sick. I was incredibly emotional on them, and of course they kept saying, there's no way that these birth control pills are causing these symptoms until I was diagnosed with super ventricular tachycardia.
What's that? Yeah, so all that, it really is, is a way to say that sometimes my heart just beats really, really fast and we can't make it. and it was actually a hormone response, so I would just, like, my heart would just start pounding. And it was so scary because at this point, I'm a senior in high school, I'm on birth control.
I'm having, my heart is pounding. They think I have lupus, I have all of these things going on and my hair is falling out, and I'm just like, will somebody please figure out what is wrong with me? And I have so many, these are non-specific symptoms, right? So nowhere in this. indicating it even could be related to my period, right?
So no one's even thinking that, you know? And so I have to wear the heart monitor. I do all that testing. That's how I got that diagnosis. And unsurprisingly, I quit having the really bad attacks of. , the super ventricular tachycardia. Once I quit birth control, they have almost com. The attacks have almost completely gone away since I was able to get off of that hormone contraceptive.
But every once in a while it's still kind of like, it trigger, like it flares a little bit and I usually do, it does con coincide with a hormone fluctuation. But I was able to get off of that and a lot of my other. cleared up as well. So for me, at that point, birth control just wasn't an option anymore.
Carol: Yeah. Can we, can we linger on that for a second? Because for some people it does help. Right? And for some people it's required for its primary or, or initial intended purpose, which is to prevent conception. Um, so definitely not antibi control, but I have heard. A thousand times, and I'm low balling that number that people have gone in and said, Hey, I'm feeling really bad on this stuff.
This is not working for me. And doctors will say It can't possibly be the birth control all the time. All the time. What is, I don't understand this, this literally makes me wanna cry and scream because this is one of the, the, this is one of the clearest examples of gaslighting. Known, known to human. And
Kate: birth control has been a phenomenal medical invention, right?
Like we love it. Birth, we, yeah. It's so important. It has an very important purpose, a very important role. It, it does help with a variety of issues and it's primary purpose, as you know, preventing pregnancy. And so it's frustrating, right? Because I want to be able to, I have to always tow that. , you know, very, very carefully because I'm not antibi control, but I am very much pro inform consent where the patient deserves to know, Hey, this is a possibility.
Mm-hmm. . But they also deserve to know that, you know, even there's so many different types of birth control. Um, there's different types of pills that, and they're all d made just a little bit differently. That sometimes, you know, it does take two or three, and sometimes someone can find one that really does work for them, whether it's ju, whether they're utilizing it for endometriosis, pain management or not.
Sometimes people get lucky and it helps, and I wish that was the case for me. I wish that was the case for my sister. My sister was very, very sick from Yaz and we, but neither of us, we don't know if we're just like genetically predisposed and not being good matches for the types of birth control available.
But IUDs weren't really a thing. When I was going through this, so I know that that's been a lot more helpful for people now, especially with uterine pain. It seems to be, but there's, you know, everyone's gonna have those experiences that aren't great, so, mm-hmm. , it just boils down to patient preference, but when it comes to, when I'm talking to parents, I really.
like to make sure that they recognize that these symptoms could be related to that. Just to listen to their child or listen to their teenager. You know, like, yes, the doctor is saying there's no way that this could be the case, but maybe another resource I tell, I tell parents and patients about is their pharmacist.
The pharmacist is a underutilized resource for getting information on our medications. They are professionals in this. They are, they are medical doctors and what they do, they are more than qualified to give you information regarding that. And they oftentimes will understand like some, um, drug interactions better.
They'll understand maybe you're on a supplement that's interacting with it. So I'm always encouraging people, please talk to your pharmacist because there might be something, the doctor's
Carol: missing gold. That's. already. Thank you, Kate. You don't have
Kate: to Google. You can actually talk to your pharmacist.
Carol: Yeah, definitely.
So you went off of. birth control. And was that before you ended up having surgical intervention or Yep.
Kate: Yeah, it was before. I didn't really, I didn't know. That's actually where, in my time in life, I'm pretty open about this. I started drinking alcohol really heavily. So I've um, I've been in recovery for eight and a half years now.
From alcoholism and well done. You know this chicken in the egg thing with alcoholism, was it the pain that caused me to drink as much as I did or vice? I don't know. But what I did do was manage my pain during that time by drinking. and I drink a lot and people will say, well, alcohol makes my pain worse.
I said, yeah, but not if you're always somewhat drunk. And that's where , that's the level right, that I just got at. Yeah. Because nobody could give me answers. I was just had all, I was just, it was my gastrointestinal symptoms. My periods were just getting worse and worse, and they weren't heavy. You know, I'm like, People are like, well, maybe you got fibroids.
I'm like, but I don't have a heavy period, you know? And it, it was just so frustrating. It was the pain. It was just the pain. And then the pain became constant and my joints were hurting, and it was just so bizarre and just so many issues all the time in and out of doctor's offices. I finally just got so tired of it.
I mean, I was tested for. And lupus and every other imaginable autoimmune condition under the sun, and it just never ended. And I finally was just tired of it and just drank. I said, screw this. I'm just gonna drink. I did that for a long time. I eventually went, I did go. I dropped outta college. When I was about 19, um, and then I drank a lot during that time and then I decided to go back to school.
Um, and I tried to manage, you know, I drank a little bit less, but this is also when I really started to dive into every imaginable alternative medicine treatment. For, for my pain. And so I started all sorts of different alternative lifestyles. Not that sounds kind of bizarre. Not alternative lifestyle, but different methods of trying to just be like really healthy, you know?
And so I did that for a while and there was some success. Of course, there's going to be, when you're living a horrible, unhealthy lifestyle, drinking all of the time, you know you're gonna have success when you start to clean up your act. But then I would have these. Massive dose of reality where it would be like, I'm not even starting my period yet.
And the first time it happened, I remember where I passed out. I was starting to work out again. I was drinking a little bit less. I thought everything was great. And then I went to use the restroom and I just passed out and I was in so much pain. I thought I was gonna be on that show. I didn't know I was.
Cause you know I'm not on birth. Oh my God. And I was like, I'm gonna be on that show. I must be giving birth. There's no other explanation of what's going on. I'm going in and outta consciousness because of the pain and I can't even get up to get my cell phone to call nine one one. And I was all alone in my apartment.
and it was like the most horrifying experience. I wish I could forget it, and I called my sister immediately and she said, oh no, it's happening to you too. I said, no, don't tell me this . She said, I know what's going on, and that's really the moment. Her and I started to work together on finding answers. We both were like, something is seriously wrong with us.
We're both ticking off similar boxes here. And so she is the one that really put in the work into looking into our symptoms. I talked to my sister, we're cross-referencing, talking, exchanging, exchanging notes, and then, you know, I kind of hope that it never happens again and I still, I just kind of manage on.
And then about less than two years later, I have my next episode like that. And this time it was even more severe. I was at my grandparents' house and I had gotten, I was visiting and I had to go to work that evening. and I went to my car and it just hit me outta nowhere and it almost feels like food poisoning is gonna start.
And then like this, that vagal response where you start to feel like you're gonna pass out. And the gripping in my, in my pelvis and my whole abdomen started and I just, I crawled back into my grandparents' house and I made it to the bathroom, and I was very, very sick. Like I was losing control of my bowels.
I was sweating. And so my grandparents rushed me to the emergency. And they got me in. And then they just ran all the blood work. They did all the scans. They did a transvaginal ultrasound, which was so incredibly painful during that moment. Oh man. And they said everything was fine. They thought maybe I was having an ovarian ton.
And my grandpa and my grandpa's a farmer, so he's like, he worked on a horse breeding farm. And he was like, this is the wildest thing. He's like, this isn't, this isn't right. Like my old twin farmer grandpa was like, this is wrong. Yeah,
Carol: because I mean, I'm sure if, if a horse was experiencing something like that, , this, I have never actually drawn this connection before, but seriously, I think that if you had a very expensive horse that was going through something mm-hmm.
those people know exactly what's going on. They probably know. Yeah. They know everything they do. A woman walks in and they're like, yeah, you know, the tests are normal. I don't know. I don't know what to do for you.
Kate: Yeah. No, that's pretty, that's exactly what it was. They just said follow up with your. And I was, oh, okay,
Carol: okay.
I didn't think it could get any worse, but you just put, you just put the nail in the coffin, follow up with your doctor.
Kate: That was it.
Carol: And I was like, I Do, you know what the doctors say when you, when you call, when you call the gynecologist and you're like, Hey, I just bled out from my car to my house and I've had to change my tampon five times in the last two hours.
And they say, well, if you're feeling faint, go to the er. And then the ER says, Hey, you're all good. Here's a bill for two grand. Call your doctor. I go
Kate: That, yep. That's essentially, you know how it went. I was just, you know, and I do like to tell people my pain would start before my actual period would start.
So like that would be the beginning and then I would start bleeding. So some people, it varies between when endometriosis symptoms line up with the menstrual cycle or the actual period. The pain is variable with each person. Sometimes the pain is on the end of the period. Sometimes the pain's the middle, sometimes the pain can be before, and that's also indicative of other uterine issues like fibroids or um, adenomyosis.
But those very commonly co-occur with endometriosis. So it has to be looked at it as a whole picture there. Um, and for me, that whole picture would include those gastrointestinal symptoms that I was having. So I got my little report and I called my ob gyn had just moved. They said, we got a new guy, he's really great.
You're gonna love him . So I go in to see this guy and he says, there is nothing wrong with you. And I was like, no. There was something very wrong on my right side. I think that RI ovary is messed up. And he said the ultrasound was fine. There was nothing wrong. , you need to take MiraLax Orlin zest for your irritable bowel syndrome.
You had a painful bowel movement that caused you to pass out and it freaked
Carol: you out. Yeah, that's what you said. Just freak. Cuz you're so delicate. You're so delicate.
Kate: I'm not delicate, but, okay sir. Right, but, and it doesn't, and we all know here, it doesn't matter anyway. I don't care if you are delicate.
That's the next level type. It doesn't, you're right. It doesn't matter. And it should be taken seriously anyway. And he j he said, if you're not gonna take birth control or you're not gonna take the medications, I'm suggesting to you right now, I cannot help you. So you got fired? I got fired and he left with the door open and I was just sobbing.
Oh,
Carol: okay. This is one of the worst I've heard.
Kate: My mom knows this. My mom remembers. like it was, she wasn't there. But I mean, I just was like, if I were to ever witness that, oh boy, there's no, it wouldn't go well. I would never let that happen to another individual because then it was just so embarrassing. I felt so low.
I felt crazy, you know, it was just like the absolute worst moment. I thought I was gen. I'm not being dramatic. I thought I was going to die because there was something exploding inside of me. I thought, you know, they originally thought appendicitis or the ovarian torsion or whatever, but something was very, very wrong.
and for him to say there's nothing wrong and to not further investigate or even refer me to a gastroenterologist ent enterologist, right. If that's what he thought the problem was. He literally cared so little about me that he didn't even care to refer me. And I think when I look back that it was the worst
Carol: part.
Yeah, it is. It, it is so damaging. You know, while your body. Is dealing with something that is throwing it completely out of balance, right? So we, we don't know what causes endometriosis, but we do know that there are lesions that grow, and this tissue is similar to the lining of the uterus in that it can swell and then it can shed blood.
And it as a result, because our bodies aren't built for that to happen. Like it's a, it's a finely architected machine. And if stuff is going sideways, no matter how minute, you know, if you step on a Lego, your whole full body freaks out. Yeah. Your brain goes crazy. You might break out in a quick little sweat, like it is a delicate machine, so if it's got tissue growing in places where nothing is supposed to be growing and.
and it's, and this tissue is swelling and bleeding and causing inflammation and then adhering organs to each other. Your body is under extraordinary stress, right? And then you, you ice that cake with somebody. Calling out your sanity. That also agitates and impacts our endocrine system and our hormones.
And so now you're just, you're just making it all worse. That's not, I thought, I thought it was do no harm. So like, if we could get back to that and, and again, there are great doctors out there and they all know who they are. They don't need me to say that there's great doctors out there.
Kate: No. There are.
There are. And these are the doctors that change our lives. Yes. Yeah. So one caveat with the, with the lesions, this is kind of a, a misunderstood thing about those lesions. They don't actually shed the same way that like the uterine lining would because it's so different. But what it does do that the uterine lining can't do is that it's making its own estrogen, right?
So it's making its own estrogen and it's making the situation worse locally. So it's just constantly inflamed and that's what causes, you know, the bleeding nearby. And it can just be a total disaster. And like you said, being in a stressful environment's, not helping any of that or helping anybody. So what happened at that point, you know, is when I, that's when I really started trying.
I got angry. I was sad. But then I got angry and I was sharing a lot when I was bartending with my regulars that were very familiar with me and I had missed a, a shift. And they were like, where were you on that Friday night? And I explained my emergency room visit, and that's when one of my regulars who knew this wonderful doctor in town that worked for the soccer major league soccer team, that's when he said, um, I really suggest that you go visit this doctor.
and cuz he's like, he helped me tremendously with a diagnosis and so I, so
Carol: he was he like just a, a random doctor, not a gynecologist? Yeah. Nope.
Kate: Internal medicine. Okay. Internal medicine doctor, when I went to his office, most of his PA patients were over the age of 60 or 70. I just, I'm sitting in the waiting room like, where am I?
This doesn't make right , this doesn't make a bit of sense. I don't know why I'm at this space. So, um, what I did was I made an appointment and I go and I show him what had happened at the emergency room. I told him what had happened when I went to that OB b g yn. And you know, I, like I said, I call him my Dr.
House cuz he was very straightforward and he just said to me, Okay. All right. He said, well, this isn't normal. I said, what? He's like, what you experienced wasn't normal. And that was the first time somebody had ever told me that that isn't normal. Wow. And it blew. I just sat there. I remember I was just like, what?
Carol: And this is years. This is you. You're bartending, so you're clearly not anymore. Yeah, yeah, yeah. This is years after this all
Kate: started. Oh year. Yes. So I mean it, it could drag on, but the thing is like this, unfortunately my story's not unique in that length of time, so, right. You know, he told me, and then he had to coach me on what to do next.
He said, listen, I think you have this disease called endometriosis. And I was I, I'd never heard of it before, ever. And I said, what? He said, yeah, I think your symptoms are lining up with this disease. He said, unfortunately, I can't diagnose it and the only way to really get a diagnosis is to have surgery.
And he told me, he said, your doctor, your OB G Y N, is not going to wanna do surgery on you because you're young and they're gonna want you to do more hormone suppress. and he said, so what we're gonna do, because you need answers, is we're gonna tell your OB, G Y N, that you're worried about your fertility after your emergency room scare and she's gonna do surgery.
Carol: We gotta make sure that fertility sticks. Mm-hmm. . That's gotta happen.
Kate: Uhhuh , can you believe that this is a soccer team doctor. For a males soccer team,
Carol: this should be like a Ted lasso storyline. How, how does that happen?
Kate: This like, I can't even make this up. Like, this is not even like a . I just, nobody should have to go through this.
Carol: I'm putting it all together. It really, it warrants like a, a scene and a film or something because, but it, it really does kind of make sense. You know, the, the obscure unknown, but super common disease is first diagnosed by some obscure doctor. Working for a major
Kate: league soccer team. I'm like, why do you know this?
First of all, I never even asked. Yeah. How did you
Carol: You didn't ask him that. That was gonna be my question. I think we have to get him on this show.
Kate: He's, oh, he's, he's the best and he's all very straight, you know, he's like not emotional coddly. He's not like, oh, it's all gonna be okay. It's great. He's like, this is what we're gonna do.
We're gonna get that diagnosis and I was like, like just a
Carol: signal to all doctors out there. We don't need to be coddled. We don't want to be coddled. No, we don't. We don't need the sugary nothing. If you can act confident in the direction that you're going to take and then explain it to us so that we are informed about the direction that you're gonna take, we're good with that.
We can get our coddling other places.
Kate: I love. Yeah. And it was such a great doctor. You know, I had all these other un non-specific things. So he did, you know, the a n A test to look for the, you know, identify the lupus markers and, uh, all these other things, and he was just such a great doctor. He just went, I don't, we went over all of that before I had my endometriosis diagnosis, and he was just like, I really don't know what's wrong with you.
He's like, so we're gonna wait on the endometriosis. Diagnosis Cuz at this point he's my, he's my general practitioner at this point. I'm not letting this guy go. You
Carol: go to the doctor at the, at the
Kate: arena . Yeah. I'll, I don't care anymore. And I'll go to the veterinarian down the road. Right. . And he was like, he just said, listen, I don't know what's wrong with you, but we're gonna call it the Cape Disease
And I, you know what, I loved it. Cause he was just like, it's the Cape disease and we're just gonna have to work on this together. And so we tried a variety of different things that he was always, always in fully informed. Hey, I like this medication. It might help with some of your widespread pain, but it might make you sleepy.
It might make you, you know, you might gain some weight. I don't know if that's something that bothers you, or we just went through all of it and I really loved that about him. And then once I wa, I did go to the OB, G Y N I did get my diagnosis. I went back to him and I said, what can we do about this?
because all my ob gyn did was go in and she was very, very kind. She was a very nice woman, but not knowledgeable and endometriosis that she did agree to the surgery once I was worried about my fertility, and she, you know, she's like, I found a little bit inside of you. I found some spots and I just, I rated them so I removed them.
and, but it wasn't very much, and all you need to do now is take a progesterone pill. And I was like, well, I can't take birth control. She's like, just please, please, please try this one. It's not really a like an actual birth control pill, it's just, we call them mini pill. Just try this. And I was like, okay, fine.
You know, she said it'll make the su the surgery more successful. So I did that and I mean, it was such a minimal surgery that I was taking organic chemistry at the time, and I was back in the lab in like three. like, but I do remember I was having, you know, a lot of bleeding after I remember calling. But it was just, I say that because later on
Carol: it was diagnostic.
Yeah,
Kate: laparoscopic. Yeah. I'll say that because later on when I had a real endometriosis surgery, there was no going back to doing anything in three days. It was, you know, it was the difference. And so basically
Carol: you knew you had surgery basically
Kate: at that point. I just then spent the next few years I was in school and I needed to finish.
And so I spent the next few years just managing it, managing the pain with my primary care physician at that point, because I was, I couldn't go back to another OB gyn. I was, even though the one I saw was really kind, it wasn't the place for me. Um, I didn't feel like I fit in as a patient there because it was a lot of just pregnant women and there weren't other women.
I felt like me. and I had all these other symptoms as well that they didn't understand. So I felt a lot more comfortable going back to my obscure, strange doctor .
Carol: Right. That we're gonna drag out of that soccer club and make him Yeah. The doctor for all of us. Yeah. ,
Kate: we all love him. Um, and so, and he helped me so much.
He understood that school was hard and I actually would stop in before if I needed to for Okay. Say just to keep me out of the emergency. , um, he would give me shots of Toradol. I don't know if you're familiar with Toradol. Just a really, really, really potent non-steroid steroid anti-inflammatory, but it would keep me out of the emergency room.
and so he would just let me come in and get a shot of that on the way to school if I needed it. And he helped me write accommodation letters for college. He really was just like who I had in my corner during that time. And I think a really important part of why I was able to manage in school. My sister ultimately is the one who found our surgeon.
She got diagnosed the same year I did, and she found our surgeon that we went to Dr. Cvo at the Center for Endometriosis Care in Atlanta. She went first. And then I graduated college and then I went down for my surgery. And, um, it was a huge deal. It was definitely something I waited years for and prepared for.
I had come to terms with, I didn't want to have a period anymore, so I opted for a hysterectomy even though I was 29. . It was just such a point of trauma at that point. Like I could not, I just couldn't handle even having a period anymore for various reasons. And it did end up, I did end up having adenomyosis and a fibroid as well as the endometriosis, so it was warranted.
But, um, unlike my ob gyn that found just a few spots I had, I had a lot of endometriosis. Like most of us end up having, you know, especially when we don't get diagnosed until later, the disease can be progressive. So I had, you know, the bowel endometriosis and so that's when all of those symptoms that I had had my entire life started to come right to light.
And Dr. Servo explained, you know, those symptoms can start before you start your period. You know, and then I had just a lot of the normal that you find in us. We have scar tissue, we have adhesions, it was all over the place, you know, and then the endometriosis lesions, and then the endometriosis and places that are, you know, the bladder.
Just, my story is so similar to, I feel like everybody else's with endometriosis. And so, you know, there are cases where someone has, you know, advanced. Where they don't have much pain. And there's definitely cases where people apparently, you know, they go and they look and there's not a whole lot of disease, but they have excruciating pain.
That's one of the anomalies of endometriosis we don't really understand. But I do know for a fact, once my bowel endometriosis was removed, I haven't had any of those. Bowel issues that I had my entire life since, and that was five and a half years ago. And so I ate so much Taco Bell after surgery.
I did, I, I did all the years of like being incredibly healthy and seedling and all of that. I had done for my, you know, managing I undid within a month because I mean, I was hitting up Sonic, I'm not intolerant and I didn't even care. I'm like getting blizzards. and Taco Bell ,
Carol: it's, well, I mean, you know, you bring up, like, we're laughing about it because in, you know, in a way it is, you know, it's helpful but it also, it's laughter because of how remarkable it is, um, and the experience is and how remarkable we are as humans to power through something like that over years.
Like the fact that you were still on the planet. after, mm-hmm. , what you went through. Mm-hmm. from age eight is a testament to your strength and to your commitment to yourself. And it, and it just, it just blows my mind that, that the amount of responsibility that you had to carry as a result of your condition.
And if this had been cancer, you would've been on a chaise lounge. You would've had, you know, I'm being facetious here, but I mean, let's be real. If you, if you have cancer mm-hmm. , there is a system in place to handle you from day one, and you are, you are carried through the process. Right, right. And in listening to Kate's story, I, I am so sick.
Of the healthcare system not creating that same environment because this is perceived, endometriosis is perceived as a period disease. It doesn't have anything to do with periods. And can we just please for a second, just take the fact that we bleed, that we menstruate and shove it in a box because it has mm-hmm.
nothing in, in essence, it has nothing to do with the conditions that we deal with that million. , millions and millions and millions of people born female deal with. Yeah,
Kate: absolutely. And what happens is you've got doctors that just honestly don't even know any better performing hysterectomies unnecessarily, because they're like, well, if we just make sure that you're not menstruating, then there's no endometriosis, because they're like, oh, it just comes from that.
Well, then you've got people who. maybe didn't want a hysterectomy like I did, but they thought that they could get their life back, but then they still have this unexplained pain, but their doctor's like, well, it's not, you know, it's not endometriosis. I took your uterus. , but we talk about all the time how that doesn't even make it, that's not even logical.
You're removing an organ, right? That's not even attached to where the disease is. Like how does that, how would that magically disappear? You know? The disease has to be removed and, you know, we, we bring up cancer a lot because it is something that we can compare it to because there are similarities. So I always tell people, no, it is not a malignant disease.
Right? So it's not technically cancer, but it, it is diagnosed similarly, you. , we're working on making the DAG diagnosis less invasive, but we still, it's really important for most of the time for us to still do a biopsy to determine what we're actually dealing with, right. Like you would with cancer, and then move forward surgically when you can to re, you know, remove the disease and, mm-hmm.
that is just something that gets pushed to the back burner with endometriosis. . They can either, if they don't want, they're like, well, they don't wanna do the surgery to diagnose. Cuz sometimes they'll say, oh, well it's too invasive. Or they'll just say, well, we can rule it out with using birth control, you know, and then they're like, then save.
And then once we do surgery, we'll just need to go ahead and do the hysterectomy as well. And it's just, it's just really frustrating because I get patients, I hear patients. all the time that are like, I wanted a hysterectomy and it was denied to me. And then I hear others that were just pushed a hysterectomy.
So there's not even, when it comes to that, there's not even a consensus amongst ob GYNs when it even comes to that. You know, it's just, it just comes down. It feels like it boils down to just whoever's opinion it is that day that you see.
Carol: Right. And they're. Right. Yeah. Cause it's, it's a business. So how is their business structured?
Are they structured as a business that delivers babies primarily, or Right. Um, are they basically, uh, you know, managing symptoms and in, in gynecology where there's really no issues, you just need your basic, your basic annual care? Or are they. , minimally invasive gynecologic surgeons who've gone through additional training to be able to effectively Yes, yes.
Diagnose and treat complex conditions that are full body. Yes. And you know, you had said it's like cancer. Um, and, and that's an important thing like when you're going, going to get surgery. Can you talk about the importance of. of excision surgery and what that means. Like what is excision surgery? Yeah.
Kate: Right. So this is where, you know, another similarity lies. If you are gonna have to have a surgery for something, you are going to want to you, if it's something really scary you're facing like cancer, and it's not just like you need an appendectomy, you're gonna try to search out the best, right? You're gonna wanna find the best.
You're like, okay, so if I have to have surgery to remove something that is scary like a tumor, I need to make sure I can you. really that I want the best. So not everybody does that and it's not always an option for everyone, but it's a common train of thought, at least. You know, you wanna make sure. So when it comes to endometriosis, it's, it really boils down to who is doing the surgery for the disease.
So a lot of the data that we have doesn't really make much sense because it's also operator dependent, we say. Right? So it depends on who's doing the surgery. So we do have good data that shows certain surgeon. That have the right experience and have done enough of these surgeries. They do have a really high success rates, and we base success very in various ways with endometriosis.
But one of the main ways that they base that is off of what we call recurrence rates. So whether or not the disease is recurring. So no, there is not a cure for cancer. There's not a cure for endometriosis, but patients can go into what we call remission of the symptoms and. What often can happen with, when you see the right expert for endometriosis, they get in there, they remove all of the disease successfully, then a patient can, possibly can go into remission and sometimes the disease will come back.
We don't know if it's, maybe it was just missed during surgery for some reason, and we call that persistent disease if it wasn't just fully removed. And sometimes there is something called true recurrence and we don't know why. Like genetically, some people will have endometriosis. Apparently just come back.
But those recurrence rates are very, again, operator dependent. So a surgeon that some of the surgeons are, as you know, they'll say like 10% recurrence rate. That gets a lot of people up in arms. They don't like to hear that because they say there's no way. But the unfortunate reality is when you look at the data, there is good data showing that there's even one out of Italy that had over 700 part.
um, in this surgical clinical trial, and there was a 7% recurrence rate in the bowel endometriosis. That's a lot of patients, that's a lot of good data. And so, and they did follow them up. So, but when you look at other literature, you'll see recurrence rates of like 50 to 80%, and that's because they're just.
They're just burning the surface of the disease. They're not going in and cutting it out. So that's what excision is. They're going in, they're finding the disease. They know where to look for it because they know it's not just a reproductive disease. They know to inspect the bowels. They know to inspect the bladder.
They know to, they actually pull down the liver and inspect the diaphragm because that is another place that likes to hide. They know where to look, which is. because you don't know if it's not there. You don't know it's there if you don't know where to look. And they know how to go in and they know how to meticulously cut it out.
And this takes so much time to learn. So it's not just something that an ob gyn is learning when they come out of school, they go into a residency and they don't learn surgery. They learn the basics for being able to do a basic laparoscopy to open you up. And they know how to, you know, C-sections.
There's no additional surgical training if they wanna do that. It's called a MIGS fellowship, minimally invasive gynecological. Fellowship, they can go and do that. Or there are places like the Center for Endometriosis Care. Dr. Sinero actually has a fellowship program there where they can go and learn how to do this type of surgery.
And so, and then, then they're baby surgeons when they graduate those programs. So then, then they gotta practice. Right? So then, yes, they know more than the regular ob gyn at that point, they're more proficient. , then they gotta practice and then they gotta focus on endometriosis. Mm-hmm. specifically, and that's another thing, just because somebody's a minimally invasive gynecologic surgeon doesn't mean they're an endometriosis surgeon.
That just means they're, you know, better trained at doing hysterectomies or fibroid removals or whatever, various gynecological surgeries there are. But you wanna find one that only does endometriosis surgery. And I recently made a post on this, I mean like a little pyramid graphic explaining, you know, it's pretty variable.
It's not just ob gyn versus endometriosis surgeon. There's a whole array, you know, years of experience in how many cases. And when I spoke with some of the, you know, the arguably the top surgeons in the world for endometriosis, the consensus was they had all done at least a thousand cases. Of complex endometriosis surgery.
So that's one of the main questions I ha I suggest people ask, you know, okay, well how many question, I mean, how many surgeries have you done? And I think that is a really great starting point. You know, is this something that you, like, you only do endometriosis surgery, are you taking other. other patients for different issues.
Um, are you doing routine gynecological care? You also deliver babies. Those are like really easy questions to get out. You know, how often are you performing surgery? You want someone who's doing this day in and day out. Not everybody is going to be able to. access a surgeon of that caliber though as well.
And I'm always, I'm very big on understanding that accessibility is a barrier that we currently face because of the system. And so it's not the surgeon's faults, it's not even really the academic institution's faults. It's just this huge, broad, systemic issue that we face from the top down. And so it's hard, you know, to, it's hard to be like, well, It's the, the specialist problem because they're greedy.
They won't take insurance. That's why they're expensive and accessible. I'm like, it's not, it's actually not what's going on there. There are some that I will tell people, you know, they're like, Hey, does this seem like, you know, should I be paying this much for a consult? And I say, well, I don't know, but here are some surgeons that'll do a free case review for you.
You know, I, I definitely make sure. . Everyone's aware that there, there's a variation there as well. But I also try to tell people, listen, there's diamonds in the rough out there we haven't met yet for surgeons. Maybe you can be that one to find that surgeon. Yeah. If you can't access one of these well known experts, just go in with this list.
Go in with these questions and with your gut and you know. Make that plan together with that doctor if they're willing to work with you and they're willing to acknowledge limitations, like, listen, I haven't done a whole lot of these, but I think I can do a really good job and I'm really willing to go in and do my best for you, and that's who's accessible for you.
I feel like that's great because these surgeons have to learn. and at some point, you know, we all, it's just unfortunately a place in history where we're at this crossroads and we're just going, we'd only have a few surgeons really capable of doing the top surgeries, so, right. It comes down to really working with what you have available and asking those right questions.
I wish everybody could go to my surgeon, but I, you know, I understand that that's not feasible. You know, I wish I could just pack everybody up and travel, get them all traveled right to Atlanta, Georgia. I'm like, .
Carol: Right. We'll just take take center for endometriosis care. Pack them up. Yes. Right. Let's do this.
Let's be smart about this. Yes. Let's just pack them up, put them in a, we'll, we'll get 'em a really gorgeous tour bus. We'll totally trick it out. Send 'em on the road.
Kate: You imagine. But there are, we are getting more and more. There are more and more. More are getting interest in it. We really are somewhat seeing a change finally, but it does, unfortunately, the burden still does lie on the patient for asking the right questions, you know, to really determine if they're gonna be the right surgeon for you.
But it is so incredibly crucial because we do know that with a really successful surgery, even if you don't have a hundred percent pain resolution, even if you don't have 90. , all I know is that where I was and with my life, I would've been happy with 70%. You know, like we're not asking for the world here, we're just asking to be taken seriously, and we're asking for someone to try to find a way to legitimately help us without just trying to cover our symptoms.
So ultimately, you know, it really boils down to making sure that you're finding the perfect surgeon. Um, but that's not always a possibility for everybody. So that's definitely where I come in as a, as a patient. . It's really, you know, my role at that point is I help somebody that is struggling finding that right doctor for them.
and as a patient advocate, what we do is we don't make the decision for the patient, but we make sure that they know what all of their options are and that they're doing a fully informed consent with whatever option they do choose. But I also, you know, another important part of my role is to make sure that patients are empowered with the right questions to ask when they're searching for that necessary surgeon.
Carol: Excellent, and, and you know, patient advocates in esp, particularly in within endometriosis and within the community. Are often people who have lived through the disease and having that kind of perspective, that's like when you found that in your sister, you know, but, but someone is getting it out of the gate by working with somebody like you.
So thank you for doing that cuz you know, you could have just ran and I wouldn't have blamed. If you never wanted to say the word again,
Kate: I don't blame people either. They're like, well, you never hear the good stories. You only hear the bad stories online. I'm like, because those people that have regained their life, they're putting this in the past and I don't blame them
Carol: one bit.
Yes. And it is possible to regain your life. That is absolutely possible. So can people work with you? Yeah,
Kate: so I am a board certified patient advocate, and I am able to be found through a couple various, um, a couple different professional organizations. They can find me on Instagram at Endo Girls blog.
They can go to endo girls blog.com. And then I have all of the professional associations listed there that I'm a member of. And other than that, they can either find me through one of those organizations or they can just informally send me a message on Instagram. They can shoot me an email at, you know, endo girls blog gmail.com.
And then I do, I, we go from there to see if we're a good fit for each other. Right. I keep it really informal. Also, I wanna make sure that. I'm the best advocate for each person I'm working with. So something that we pride ourselves on as board certified patient advocates is that we work with each other within the community.
So if someone has a particular case that I think somebody else is better suited for that person, we're really big on collaborating and me saying, Hey, you know what? I know this other advocate that might actually be better for you. So I love that. At its core, it's really about the patient at the end of the day.
But yes, I always am willing to take. Whichever, you know, anybody that is looking for help, whether it's with their insurance companies or it's just needing the support, going to a doctor's visit, I will do everything in my, um, ability to do so, not just in person. So I do a lot of work virtually to help people.
So I do own an l l LLC that I do that through. So I'm all legal there and I'm always willing, my, my dms are always open just to chat also. That is
Carol: phenomenal. And it's something again that is, um, that we see so often in the endometriosis community, which I really think speaks to how debilitating this disease is.
That people who have lived through the worst parts of it recognize how bad it is. And, and they, and it's like they have to help, help others get through to the other side. Let's end on a, uh, with a little bit of a silver lining. What are you excited about? In, in terms of treatments or diagnostics or the science that's going on for Endo, what can we leave people with as, um, the good news?
So
Kate: my favorite shift that I'm starting to see in the science realm is the focus away from, you know, hormone suppression. You know, the focus of it being a menstrual disease. Scientists are finally starting to research. Endometriosis as a whole body inflammatory condition. So we're starting to look at, we're starting to see more research on from a genetic standpoint, or we're seeing more research from an immunological standpoint.
So we're really moving beyond, you know, what used to just keep us in a box as a period disease. So we're finally starting to see beyond that, and we're really looking into other factors related to endometriosis, right, that aren't explained. Periods. That is something that I think we can really, we can look forward to, and I think that we need to thank the patient community a lot for that.
A lot of the change that we see with this disease is because the patient community is driving that change, and so I want people to know that their voice really does matter, even if they don't think it maybe does as a collective. I've stated that this endometriosis awareness month, I have seen more and more people on social media correcting the definition sharing.
accurate information about this disease. I'm seeing more of it now than I've ever seen in the past, and it's really monumental. Even if people don't see it right now, that is the driving change that is really influencing the changes that we're seeing in research as well,
Carol: so well said, and so true. Very, very grateful for that.
Yeah, it's just an amazing community and, and you're a fantastic shining example of it because you, again, you, you could have. You know, kicked off into the sunset and said, woo-hoo. Finally after how many years? You know, and you're like, Nope, I'm here. I'm gonna, I'm gonna help out. So, we're super appreciative.
Kate: I honestly, it's because, you know, I've seen other advocates around me and do something with the disaster of this disease that they were given. So I just try to carry on what the greats before me have been able to do, and hopefully, you know, make that multipl. Yeah,
Carol: that's absolutely, absolutely what's gonna happen.
And we will continue to make progress. So, Kate, thank you so much. I'm, I'm so grateful that you're here and I'm so grateful that you spent this time with us to, to give us what I consider to be just like one golden nugget after another of information that's actionable. Supportive. And, uh, if you were my patient advocate, I would be well on my way to feeling better.
Um, so thank you. Thank
Kate: you so much. Thank you for having me.
Carol: We'll be right back with ending on a high note.
This is exciting news. Scientists have restored vision in mice due to breakthrough research that could reverse the condition in people as well. What's the condition? It's a hereditary condition called retinitis pigmentosa, and it's one of the most common causes of blindness affecting one in every 4,000 people.
Well, now researchers in China have used crispr, a genome editing technique to correct a mutation that leads to the condition in both mice and humans. Not only did the genetic correct. Lead to the mice getting their site back, but the mice were shown to retain their site well into old age. This is so exciting and I think I'm so delighted to bring it to you.
Bring this information to you. If you haven't heard of this news, because I feel like we're at the beginnings of what is going to. An explosion in technological advancements that will help reverse conditions that people have been suffering with for a really long time. And so for those of you who are longtime listeners, or follow us on TikTok and Instagram at Uterine Kind, you will know how much we talk about the importance of research, especially the importance of research.
On the female body because we have the ability to apply these advanced technologies to our bodies. As long as the research is there that determines a benefit. So we have to fund that research. Otherwise, we will have cool advancements in diseases and syndromes and disorders that impact all sex. But we will not have those same advancements specific to the female body if we don't start funding research on it.
So ending on a high note and asking for you to talk to your loved ones and talk to your friends and colleagues about the need for research on the female body, and you can throw this stat at them. 1% of the 220 billion spent on healthcare related research is directed toward research on non-cancerous conditions that impact female.
Just 1%. We are worth a lot more. We know that. So now we have to demand it. Thank you, angel and Maryelle for producing this podcast. Thank you. The team at Uterine Kind for everything that you do to make sure that we can show up every day and support people who are living with chronic conditions or living with symptoms that may be undiagnosed chronic conditions.
You can download the app@uterinekind.com or in the Google Store. We're still waiting for Apple to. Go through their process, but it should be any day now and soon you can just download it from the Apple store. But we built this app to be device agnostic so that people could use it even if they didn't have smartphones.
So go to uterine con.com where you can learn everything about the app that we built to help you take control of your health. Helps you record your symptoms every day in detail so that you can take that data and walk into your doctor's office and say, here's my symptom story. Let's work together to get a definitive diagnosis.
All that@uterinekind.com, and we will be back next week with a very special interview. We are speaking with a lead researcher from Chiai Pharmaceuticals about their recent paper focused on a treatment that. Halt and reverse endometriosis. So follow. Us on social at Uterine Kind on Instagram and TikTok, and subscribe to the Hello Uterus podcast wherever you get your podcast so that you know when this interview drops.
Because we all know someone with endometriosis and this research is exciting and it's important that everybody knows it's out there until next. Take excellent care of yourself, be cool, be well, be kind.
Angel: The Hello Uterus podcast is for informational use only. The content shared here is not used to diagnose or treat any medical condition.
Please ask your physician about your health and call 9 1 1 if it's an emergency. And thank you uterine kind for listening.