Episode 6: Endometriosis Q&A - Diagnosis, Relationships & Real Life

In this special Q&A episode of The Endo Edit, Katie and Ragan answer your questions — getting more personal than ever before.

From their individual endometriosis journeys to how the condition has impacted their relationships, they open up about the realities of navigating life with endo. They also share how they met, what inspired them to start The Endo Edit, and what it’s really like building a platform centered around women’s health.

This episode is honest, unfiltered, and feels more like a conversation than anything else.

If you’ve been following along, this is your chance to get to know the voices behind the mic.

Transcript

SPEAKER_00 0:00

You're listening to The Endo Edit, where real stories about women's health and lived experiences about healing. I'm Katie Turner, an endo warrior over ten years in the making, believe in clean living, and proof that your diagnosis doesn't define you.

SPEAKER_02 0:14

And I'm Reagan Hubbard, a registered nurse, holistic health coach, and fellow endo warrior.

SPEAKER_00 0:19

If you've ever felt dismissed or unseen, you're not alone.

SPEAKER_02 0:22

This is where we talk about what's been silenced. Welcome to the EndoEdit.

SPEAKER_00 0:27

Welcome back to another episode of the Endo Edit. Today we are gonna just go through and answer some questions that you guys submitted to us on Instagram through um some DMs. So this will be a pretty fun episode. Um and it's kind of all over the place. You guys are asking us about Endo. You guys are asking us about our relationships and our lives outside of Endo. So there's some fun questions that you guys submitted. So we're just gonna go ahead and dive into it. I'm excited. Me too. All right, so question one is asking, How did you both first realize something wasn't normal with your bodies? So I think I first realized something wasn't normal. Like, I think I was kind of teed off a little bit when I was like the first one in my friend group to start my period by like years. Yeah. Like I was like not even yet in middle school when I started my period, and it was so heavy. Um like right from the bat. And then I had friends who like some of them didn't even start until high school. Like my very active friends, like they didn't start until they were like halfway through high school. So I was like, oh, my period started really early, but no one ever said that was unusual. Or if if it was, it didn't make me feel like it was unusual. I just felt like it was because like no one else in my friend group was going through it at the same time. But what triggered me to like start going to doctors was when I just was unable to eat for like almost a whole year of like I went from like a hundred and thirty pounds to like 85 pounds, and we couldn't figure out what was wrong with me, is when I was like, there's definitely something going on that is like a deep-rooted issue that like the band-aids aren't fixing it. Like I'm still having issues and like the tests weren't coming up with anything, the food elimination diets weren't helping anything. Um, and that's when I went back to like my OBGYN and told them that I wanted to get the surgery done for oh, which we dive into our personal stories way deeper in episode one. So if you are interested, we do a big deep dive in that one. But that's kind of mine for me was food. When I couldn't eat as someone who loves food and I lost so much weight, and it wasn't because of like a food intolerance, is what I knew. Like there was just something bigger going on that was presenting in a GI fashion, but wasn't appearing to be GI related. Yeah. My hormones and endo lesions on my intestines and my bowel and all that fun stuff.

SPEAKER_02 3:05

Yeah. Dad, that's so interesting. I think this is a great point because I I feel like my sign was kind of the opposite, um, which goes to show endo is different for everyone. I would agree. I was also the first girl to start um my period in like within my peer group, again in middle school, and a lot of girls didn't start till high school or even late high school. But I would say weight was my sign as well, but the opposite of I would have these massive fleet like weight fluctuations, but go from like a normal to like heavier. Like I didn't really lose weight without trying, but I would do literally nothing different and like gain 10 to 15 pounds. I mean, even now within my cycle, from beginning of my cycle to end of my cycle, it's easily an eight-pound difference just from water weight inflammation, probably stuff like that. That was kind of my sign and why I ended up going to the gynecologist was that, and then a little bit of anxiety too. I went through seasons where it was just like very heightened for no obvious reason. Um, and it was definitely hormone-related. And at those same seasons, this is usually when I would like go through the big weight fluctuations. So that was why I went originally and then yeah, I was put on all the birth controls that then obviously didn't help very much. But yeah, it's like kind of the opposite of what you were saying, just a little bit crazy.

SPEAKER_00 4:27

Yeah, and then your body took the extreme route and made you get a surgery. Yeah, that's true. I didn't do warning.

SPEAKER_02 4:35

I know. I just funny, yeah. Whenever I think about that season, I'm like, I never really made the choice to like start this process. Literally, my body is like, all right, you have the note, you need an emergency surgery, and then after that you can figure out what that means.

SPEAKER_00 4:51

But yeah, hey, you're not listening, these things aren't normal, so we're gonna go ahead and twist one overy, so you'll probably pay attention. Yeah, yeah, I don't recommend. I knew No. No, uh-uh. That's not not the best, not the most ideal way to get multiple surgeries to get diagnosed. No.

SPEAKER_01 5:08

No, definitely not.

SPEAKER_00 5:09

Even though one surgery is not ideal either, but at least it's a diagnosis, right? Yeah, exactly.

SPEAKER_02 5:14

For sure.

SPEAKER_00 5:15

Okay, which leads us into question number two, which is how long did it take you to get officially diagnosed with endometriosis? Mine took my entire f my entire high school experience. I started having symptoms that felt abnormal freshman year, and then it wasn't until the summer before going into my freshman year of college that I got the diagnostic surgery that confirmed I had stage two endometriosis. Yeah. Reagan's is hard to track because again, you weren't like I wasn't looking seeking medical opinion for years. You were just kind of like bad appearance, bad anxiety, weird weight, birth control, and then bam, twisted ovary.

SPEAKER_02 6:02

So it's pretty technically like eight hours or whatever from the time that I was feeling really bad at work and went to the ER. It was like once I yeah, once I got to the point of like, oh, something it feels really, really wrong. It was like within that same hour they told me I had endometriosis. So like that's technically the amount of time it took to get diagnosed, which again I would not recommend. That was not a fun experience. But but yeah, with like the other issues, I have been kind of chasing the anxiety weight issues for years. And just kind of cropped it up to like I'm just stressed, like I was nurse, I was working bedside, like kind of those things. Uh but yeah, I didn't really I wasn't seeking out a hormone disorder at all. I wasn't even on my radar. So yeah, it's a mine's a weird one.

SPEAKER_00 6:53

Yeah. Yours is. Question number three What symptoms do you have that people don't usually talk about? A big one for me is histamine. I never even knew histamine was a thing until I met with my like integrative health practitioner. And I just thought that moving to Nashville gave me terrible, weird allergies that just never went away. And she was like, No, you have high histamine because of your high estrogen, and you're not like like histamine is naturally produced in your body, it is not just like an allergy thing that is because of pollen or dust. And so you take Benadryl, xerotec, claritin, whatever you're taking. Yeah. So when she was like, Oh, you have high histamine levels, like it made so much sense because I just felt like I always was having like a sinus, like stuffy nose, my ears were ringing all the time. I just always felt like I had like a head cold. Yeah. And that was one thing that I never, ever heard about of like anyone saying, I have endometriosis and I have chronic head colds, you know? Like I never heard. It's it's the typical, like, oh, fatigue, bloating, bad periods. Mine was really like terrible, like just like chronic sinus, not even infections. I wasn't going to like doctors because it was painful. It was just like annoying. And the earringing was concerning. I did go to doctors for that one, and they were like, you don't show any signs of hearing loss, which I was like, thank goodness I'm 28 years old. I would hope not. So yeah, that was a big one for me. And then like insomnia. I get really bad insomnia throughout my cycle. And then just like just heightened PMS symptoms, I guess. Oh my gosh.

SPEAKER_02 8:32

Yeah, that was gonna be my answer. Uh the week before my period, really, even on my period, it's not as bad. It's the week before that luteal phase. I struggle. It's better now, but especially when I first was coming off of birth control, it was so it was so rough. I remember I like I felt like I was crazy. And then looking back, I'm like, wow, this was it all makes so much more sense. But I think people don't really talk a whole ton about that because I mean you can have anxiety constantly, but I think the huge fluctuation, like say you're not anxious, not anxious, not anxious, and then like the week before your period, you're so anxious and so depressed. It's like that is hormone related. It's so common with with endo. And so that's something that I've been really focusing on recently. That one's a hard one.

SPEAKER_00 9:23

Yeah, all the fun things. And then I mean, similar to you, my like pre-period versus post-period, just like bloating and puffiness and water retention. Like, I have friends who I could never tell they're on their period and they're in their bikini and they're not bloated, and they're eating whatever, and their skin is still glowing, and I'm like, you look all the time. Not me. I can easily tell. Like, if I'm looking in the mirror, I'm like, oh, about to start my period.

SPEAKER_02 9:50

Yeah. Oh yeah. Same. I wish that would be amazing.

SPEAKER_00 9:53

To just not even know when you're about to start your period and not even look like it.

SPEAKER_02 9:57

Oh my gosh, yeah.

SPEAKER_00 9:58

Yeah, imagine crazy. Life, what's what's it like? If anyone out there is experiencing that, share with the group. Actually, don't. We'll just be really jealous. Yeah.

unknown 10:07

Yeah.

SPEAKER_00 10:09

Just add like your period is terrible, like everyone else. Okay. Um, okay, next question. What does a flare-up actually feel like for you? Hmm. For me, when I was at a point of having really bad flare-ups, it would always start off of just like I couldn't stand the feeling of clothes on my body. Like my skin hurt. Everything just felt swollen and inflamed. Wearing the loosest clothing possible was like just like everything hurt. Um, that was a big one. And then a lot of like IBS symptoms because again, my endocresented in a very GI-related fashion. And so flare-ups were definitely like IBS related. Yeah.

SPEAKER_02 10:57

Yeah. Yeah. I think for me, it's kind of funny with all these questions. I'm like, it goes through the same thing. I I usually get super anxious. Yeah. It kind of starts with not being able to sleep very well, and then my muscles, like my back muscles, my pelvic muscles, I can feel the difference. It's just like they're super tight, and I'm usually pretty anxious. That is a telltale sign that I need to be tapering back.

SPEAKER_00 11:20

Yeah. It is just so interesting how it presents so differently.

SPEAKER_02 11:24

Definitely. Yeah, because IBS stuff is not like I I do get bloated or have the occasional stomach ache or whatever, but it's not definitely not to your level.

SPEAKER_00 11:34

Yeah. Yeah. Yeah. Stomach issues are not fun, but neither is anxiety. Neither is like dribbling, debilitating. I can't leave my house anxiety. Um have either of you had more than one surgery for endometriosis? If so, what was your experience like? So we've both technically had two surgeries that were like endorrelated.

SPEAKER_01 11:54

Yeah.

SPEAKER_00 11:54

Yours is kind of like opposite of mine. Because you got diagnosed. Well, you had your diagnostic surgery after already getting an endo diagnosis.

SPEAKER_02 12:05

Yep. Yeah. My so my first surgery technically had nothing to do with endo. It was a ovarian torsion slash endometrioma removal surgery. So they could see the endo. They just didn't do anything with it. But yeah, I mean, I got diagnosed before that, but because they put eyes on the endo, they're like, oh yeah, this is your endo, this is your stage, etc. And then I had about six weeks after that, had my ablation slash excision surgery. The experience for both of those felt very similar, honestly. Like, I mean, I think the first one was rough because I wasn't prepared for a surgery. It was like you're going to surgery right now. So I think my body just had a rougher time recovering from that one. But then even the second one, the whole like you'll be up and moving in two weeks. I never experienced that. I was pretty tired and couldn't do a whole ton without needing to take a nap or like being in a lot of pain for at least a few months after. So I know you had a similar experience, I know with your first one, right? Your first surgery. Yeah.

SPEAKER_00 13:09

My diagnostic surgery, I did not have a great recovery. Like it felt like it didn't fix anything.

SPEAKER_01 13:14

Yeah.

SPEAKER_00 13:14

Yeah. Um, I was the same as you. I was just still tired. I wasn't like, it's not like I had like pain in my surgical sights. Like it didn't feel surgery related. It was just like none of my previous endosymptoms went away. Yeah. Yeah. Like I was still tired. And then you know, that whole freshman year of college, I was just sick all the time. Like that, like bronchitis, stomach flu, like my immune system was just non-existent. So yeah, my first surgery did not provide any sort of like relief, other than like the relief of now I officially have a diagnosis. I know what I'm up against and battling and dealing with, but that was it. Yeah. Um, it wasn't until like two years later I got a bigger surgery in Atlanta with an actual endo specialist who does the excision. Yeah. And it was a pretty like intense surgery. They took my appendix out, they like stitched my ovaries up, they put a mesh in my uterus. I did all types of stuff. It was like a full like body cavity search for endo and removing as much as they possibly could that they found. And I was up and walking around that same day. Yeah. I was in the hospital overnight, whereas my first one, you're like an outpatient, so you're in and out on the same day. With that one, they kept you overnight. I was on like a soft food diet, which I was never told to do after my first one. They gave me this amazing like abdominal wrap that just felt so great after like having stitches in your stomach and being cut open a little bit. So yeah, my second surgery was an absolute like life-changing surgery for me.

SPEAKER_02 14:45

Yeah. Yeah.

SPEAKER_00 14:46

Haven't needed one since, and that was in 2018, and it's now 2026. Yeah. That's pretty good. That's a good run.

SPEAKER_02 14:52

Amazing. Yeah. I think it's really important to find an endospecialist who does excision because mine was a combination, which I actually don't even know how much of which my surgeon did. But it's funny you you say that you were sick so much after, and the it's what is it now? It's been almost, it's like been a year and a half since my surgeries. I have been so like so sick. At least once every other month, I get some form of sickness. So that's really interesting.

SPEAKER_00 15:19

That is interesting.

SPEAKER_02 15:20

Yeah, I'm gonna keep that in the back of my brain.

SPEAKER_00 15:22

But yeah, find an excision specialist.

SPEAKER_02 15:27

I think that is the key.

SPEAKER_00 15:28

Um, and if you go to the Center for Endometriosis Care, C E C dot com, they have a whole, like, even if you're not seeing one of their surgeons, they have like an FAQ page of questions you should be asking your own surgeon to make sure that you're getting in with someone who's gonna do like the best possible job. Um, so I think that's awesome because I'm not a surgeon. I am not a doctor, I don't have a medical background at all. Like I am just a normal person who would not know these technical questions to ask a doctor or a medical practice to make sure I'm getting like the best care possible. So I think that's awesome that they put that up there because they know they're not available for everybody. Yeah. So that's a great resource to have. Yeah, definitely. What has helped you the most in managing your symptoms day to day? I think for both of us, it's a pretty good balance of like supplements, which we speak to in episode four, I believe. Yep, yeah, episode four. Um, it's like supplements that we love that have really helped us out. And then episode five, we dive more into like our routines, diet, excise. Like, unfortunately, it is just kind of like a lifelong, I don't want to say like head game, but like yeah, we don't like the band-aids and the medical like routes to suppress things in unnatural ways. Reagan and I are both very much about like how natural and organically as possible can we like manage our symptoms. Yeah. And it's been like for me, years of trial and error for Reagan, also years of trial and error. Um, to find things and like, you know, you gotta get to the to the root issue first. And like that might require more medically managed things for sure. But once you get to a point where like you know your body, you know what key different cues mean, and when you find a really good doctor, that was big for both of us as well. Someone who listens to you, yeah, who will take the natural path with you, who like supports that and has those resources, but can also write prescriptions and blood work and like can do medical stuff as well has been big for us. But it really is just like listening to your own body. And like, if that means you're eating the same thing for breakfast, lunch, and dinner every single day because you have bad GI symptoms like I do, then eat the same thing for breakfast, lunch, and dinner every single day if you know you feel good. Like it's not glamorous, it's not exciting, but I would rather feel good than like switch up something to eat that's more exciting and more fun, and then I'm like bloated and bedridden the rest of the day.

SPEAKER_02 18:06

To go off of what you said, it's mostly lifestyle that I feel like we've really changed and like managed our symptoms with of just listening to your body. Sometimes that means taking a rest day when you don't think that you should or whatever. But yeah, I think really listening to your body, changing your lifestyle slowly to figure out what works and what doesn't, and making those changes last a long time. Um, and then I think the other part of that too is just like building community around that. Yeah, just having making sure your family and friends and spouses know, letting them know you're having a flare up or like are trying to do this. Can you support me in this way? So I think that's been really helpful too.

SPEAKER_00 18:47

Yeah, I know. Anytime that I'm like coming home for an extended period of time, my mom is like, Are you eating cheese? Are you eating crackers?

SPEAKER_01 18:53

Like, should report it.

SPEAKER_00 18:56

What are you eating? What are you not eating? What brands do you like? Like, send me pictures and going to the grocery store. Like, and my mother-in-law does the same thing of like same, you know, what do I need to have prepared for you? And a lot of the times I know I'm high maintenance and I'll pack my own like coffee creamer and like whatever yogurt, whatever it is, but it is definitely nice to have a support system who supports the you know decisions that you're making. If even like they can't relate, but they're like, do whatever makes you feel good. Like that's what we all care about.

SPEAKER_02 19:23

Yeah, yeah, I agree. I feel like we're both really grateful to have really great in-laws and really great parents who know that we have endo and are very accommodating. We both don't live in the same state as our family. So when you go back home, it just it makes the transition and the travel, because travel by itself can send you into so I think it's it's really helpful. And if you don't have that, like it's it's okay to like be a little bit high maintenance in this way if it means that you are gonna feel good.

SPEAKER_00 19:51

For sure.

SPEAKER_02 19:52

Yeah, definitely.

SPEAKER_00 19:53

Yep. And that kind of ties well into the next question of how has endometriosis impacted your mental health. When I was in a bad flare-up, like my worst times were unfortunately like high school and college, and I feel like it affected my mental health in a way that it affected my friendships. Like I felt like I was closing myself off and I wasn't being as participative with my friends as I wanted to be. I like to the point that like I caused my own depression. I like, you know, like it was hard. It's hard when you because for me, leaving the house gave me anxiety because mine was GI symptoms. I had no idea when like a GI flare was gonna hit, and I'm gonna be in the bathroom for the whole get together, and that's not fun for anybody, and I don't know what kind of food they're serving. Um, because it wasn't at the point where I was very vocal about it, and like I didn't like being high maintenance about it because no one else around me was, and I felt like ridiculous. And it's kind of like you started getting in your head of like, I mean, do these things really matter? Like, why can't I just have the pizza and the wine and the whatever it is, like when you're in college with your friends and you're old enough to drink and do the fun things? Um, yeah, it was hard. Mentally, I got into a really dark place because social media is a big thing for our generation. And so I could be in my bed with the lights off in pain on a Friday night, and I'm seeing all my friends out and about having a great time without me. And it's hard because it's like it's not that I wasn't invited. I chose not to go and now I'm sad that I'm not there. And who knows, maybe if I did get out of the house, I would have felt better than just laying here and now everything just feels worse.

SPEAKER_02 21:36

Yeah. Yeah. Yeah. I think that is such a real side of endometriosis. Cause I mean, same, I've definitely been in that position. I think for me, some of my darkest times have been when I just feel like a burden to other people. Like, even though I know that that is a lie. It's just when you have a chronic illness that is so sensitive to changes, like. I don't know if I if I was in a flair or I don't know if other other people in my life were going through things, like I would just be like, okay, I can't talk about myself or what I'm going through because I don't want to be a burden. Like I just I almost wanted to like be invisible when I even still currently I struggle with this, but be invisible when I'm having a flare because I don't wanna stress my husband out, or I don't wanna like call my mom and complain too much, or I don't wanna like tell my friend who's going through something really difficult that like I'm in a lot of pain. Uh so yeah, I I think I really clam clam up a lot of the times and then like you said, that kind of that makes things worse almost because then you cut the community off and then you feel alone and your mental health does have a direct correlation with your body, and if you're not in a good place mentally, it's really hard for your body to like heal. Yeah. Um so yeah, and intel can be really hard to navigate. Yeah. Because it is something that is forever, and I think that's a mental part for me where I'm like, I don't wanna I don't wanna burden people about this because I know it's never gonna go away. And I feel like I almost um the amount of times I can talk about it within five minutes like that's not true, that's not true.

SPEAKER_00 23:11

Right. Like if I broke out in a rash every time I wasn't feeling good, it would be so much easier for people to be like, oh, Katie's not feeling good. Like, let's we're gonna cancel plans, you know. But like it's this invisible thing that I can wake up and do my workout and shower and put my makeup on, and no one would have any idea that like today I don't feel good because I look the same as I do every other day.

SPEAKER_02 23:32

Yeah, yeah. And I feel like people with chronic illnesses and endo are really good at like faking it till you make it. So I will be smiling and happy and fun to be around, and you will have no idea that I'm like kind of dying inside. Yep. It's really hard for spouses because it is an invisible disease and it's like having to ask for help, like because we are the ones who have to communicate. Like they can't see it. So we have to say, Hey, I'm not feeling good. Can you take this on for me? Like I'm having an endo flare. And it almost like it it gets to me. I don't know if it gets to you, but I'm like, I don't want to keep saying these things, but yeah, I need to so that I can rest, so that I can heal, and right. Hopefully, one day we'll have some sort of a cure, but then you're not alone in that.

SPEAKER_00 24:17

Yeah, even though it feels very lonely, you're not alone. No, yeah. And hopefully this podcast helps you see that there's a community that totally gets it. Okay, next question is what is one thing you wish doctors understood better about endometriosis?

SPEAKER_02 24:35

I I think the it's a whole body. It's just treated as reproductive. That's kind of all they look at. And it's just like I don't know one girl who has endo who doesn't get sick all the time. Like very, very immune-related. Mental health is affected, metabolism is affected. I don't know. I almost wish that doctors would treat it as like whole body, like pelvic floor would be included, mental, you know, like mental health evaluations would be included, yeah, immune uh testing, like figuring out what foods make you flare up and like all the things. I just wish it was more all-encompassing because it is.

SPEAKER_00 25:13

Yeah. I wish maybe not that they understood better. I'm not gonna claim to be smarter than the doctors, but like I wish that they provided more resources. Yeah. Like I wish that when I came out of my surgery, I wasn't just told you have endometriosis, you should consider a hysterectomy, you're never gonna be able to have kids. And this is a lifelong disease that has no cure. So we'll be seeing you every two to three years to get surgery done. And then I'm left, I'm at the door and I'm starting college on my own, you know. Like that's crazy. Like, there's you know, like get in, I was 18 years old, but I'm still a child. Like, I'm still very heavily reliant on my parents at that time. And there's girls that are younger than I was getting diagnosed with it, and then there's women that are much older than we were that are getting diagnosed with it. And I think it's just the fact of like you're not given any resources. Like there's no like pamphlet on like managing endo and resources in your community and local community groups to be a part of because it is very isolating. Like, there's, you know, if you get diagnosed with cancer, you're given these cancer support groups. Yeah. And your spouses are given support groups for people that have cancer. You know, it's like endo is being found everywhere and it metastasizes and grows in a very similar fashion to cancer. There are so many studies out there that are assimilating endo to cancer, but we are not given the same like resources and support and options as someone who has cancer. Not that like, I'm not trying to like put them at the same playing field, but like I just think it needs to be taken a little more seriously.

SPEAKER_01 26:45

Yeah.

SPEAKER_00 26:46

And not just being brushed off of like, okay, you have your diagnosis, goodbye. Like I was like, there was no follow-up, nothing to like see how I was doing, not even like my surgical sites healing, like it was just the craziest experience, and then you're left as being very isolated and then like resulting to Google to kind of figure things out on your own. They just need to be better with like resources and support.

SPEAKER_02 27:11

Yeah. Yeah. There are support groups for other illnesses. But I actually have never even thought about the fact that there's not not really support groups in place.

SPEAKER_00 27:20

You have to everything is just left to your own devices. Like if you want a support group, you need to Google local endometriosis support groups in whatever town you're in, you know. Like if you want to be a part of something that you can connect with other women that are going through the same thing.

SPEAKER_02 27:35

So interesting. Yeah. Yeah. Yeah.

SPEAKER_00 27:38

That's a that's a really good point. Like, I wasn't diagnosed by an endo specialist. Um, so I also wish that I had been referred to an endospecialist after receiving my diagnosis because again, that was left up to me to find no. Like I I heard about this surgeon in Atlanta through a family friend whose daughter had surgery done. And then when I moved to Nashville, it was up to me to Google like endo specialists near me. Like, no doctor referred me to anybody, and then you're waiting months to get in with somebody. Um, so that's another thing that just wasn't handled very well either.

SPEAKER_02 28:15

Yeah. Shall we move on to our next category? I can kind of take it.

SPEAKER_00 28:18

Well, I was gonna say that's a good segue to kind of our last endo-related question, which is have you dismissed or not believed by a doctor? And the answer to that is easily yes. Yeah.

SPEAKER_02 28:27

Yeah, yeah. I'm pretty sure we talk about it in almost every episode. So across the board, yes.

unknown 28:33

Yeah.

SPEAKER_00 28:34

Pretty much endo is gonna give you very thick skin and teach you how to stand up for yourself. Yeah. And you just can't take anything to heart that a doctor tries to dismiss when you know your body, you know what you're experiencing and what you're living on a daily basis. And so if a doctor ever dismisses you or makes you feel like you're not important or not heard, or they don't wanna pursue options that you're interested, then walk out that door and find someone else until you connect with a doctor who is gonna do all of those things for you. Okay, some non-endorrelated questions. Yay. Okay, so still kind of endo-related. Of like, how has endometriosis affected your relationships as far as dating, marriage, friendships? We kind of touched on it, I feel like throughout some of these answers of just like the mental health battles, the isolation, the invisible disease battle of like your spouse can't see the pain that you're going through. Yeah. And it is hard to be out and about with friends. It can be hard for sure.

SPEAKER_02 29:36

Yeah. I think a positive side to that question is that it does really like strengthen and deepen the people in your life. Like you kind of learn to find the people who are really gonna support you and hold on to them. Um, I mean, my husband and I were dating when I got diagnosed and had all the stuff. So for us, it was like not like a make it or break it, but it was kind of like a test before we got married of like in sickness and in health. Because when we started dating, I didn't have endo that I knew of, and as far as I was concerned, was like somewhat healthy. Yeah. I'm not now, but you know, it's just a whole different, whole different lifestyle. And so he had to sign up for that.

SPEAKER_00 30:15

Yeah.

SPEAKER_02 30:15

And I think it's made our marriage a lot stronger and us a lot closer.

SPEAKER_00 30:19

Yeah. That's a good point. It would be a lot easier to empathize with your partner if you saw them go through the battle to get to the diagnosis. Like for me, I met my husband after I'd already had both surgeries and I was like kind of on the other side of things. And I was having fun and staying out late and eating and drinking and acting like a normal person. And then, like, two years into our relationship, I kind of took a dip. And that's when he was like, I don't understand.

SPEAKER_02 30:50

Yeah, that's hard.

SPEAKER_00 30:52

He knew when we first started dating that I had endometriosis. I was never like, I don't want to tell him about this because like it affects my daily life. Like it does, even though I was like at a good point with it. I knew like I knew pretty quickly he was the one and we wanted to have kids, I wanted to be up from which is everything because it affects a lot of like our relationship. It does. So it was hard for him to see me go from like bubbly normal Katie to now like I'm bedridden, I'm not like going out on the weekends, I'm tired all the time, I'm in pain, I'm bloated, I'm not eating normal. Like it was hard for him to be like, well, this is what endometriosis is, but like, why is it like you were fine and now you're not? Yeah. And it's like that's enough.

SPEAKER_02 31:29

Yeah, unfortunately. It's yeah. Which like my my husband definitely sees that too. Like, because there are there are seasons where I'm good and there are seasons where I'm like, I am really not good. And I think it's a little bit hard because it's I mean, he was there when I was kind of promised the surgery will like change your life and you'll feel so much better. And then that hasn't really happened, like in a very drastic sense. So I think both of us went through that. It's gonna be better, better, better. And then we kept on waiting, kept on waiting, and it's like, okay, it's not that much better. It is a little bit better, but there's definitely lifestyle, diet, movement, potentially more extensive excision surgery in the in my future. That's just kind of where we're we're at. But yeah, I mean, child planning, all of that is like dating. I mean, kind of have to talk about that pretty early on.

SPEAKER_00 32:17

Okay. These next two questions I'm gonna kind of like try to group together. And I feel like we've already kind of touched on both of them, but they are how do you communicate with your partner during a flare or a hard season? And what do you wish your partner or others understood about living with Endo? I think we're lucky in a sense that we both have very like caring husbands. And at the end of the day, they only want what's best for us. But like, communication is key. You cannot be a bad communicator. Like, I had this time of like I would get frustrated with my husband because he couldn't read my mind. You know, where it's like, why do I always have to tell you, like, why can't you just see that I'm not feeling good when I'm like every morning I wake up and lay on the couch? Like, how is he supposed to know that today is different from others? Yeah. So it is like, just remember, no one can read your mind. Like, it is an invisible disease. Even if you feel like you physically do not look good, men are men. They are not detail-oriented, they might not notice that you don't look good. Yeah. Or in your own little worlds most of the time, half the time, just you know, thinking about whatever boys think about. So it is just like it's on you to communicate. It really is. And just like hopefully pray that you have a very responsive partner who's not gonna like blame you or guilt trip you for not feeling good again. When it's like, trust me, I want nothing more than to feel good. Like I know I did this on purpose, it's not an excuse.

SPEAKER_02 33:44

Yeah, yeah.

SPEAKER_00 33:45

When I'm saying I don't feel good and I can't leave the house today, take it seriously. Yeah, respect it and lay on the couch with me.

SPEAKER_02 33:51

And like be gentle, yeah.

SPEAKER_00 33:52

Right.

SPEAKER_02 33:53

I think direct communication was something that I also had to learn like fairly quickly. Yeah, I'm like, but you can tell, you can see I'm not doing what I normally do, or like whatever, and my husband. No, I go to work every day. I don't, you know, I'm not at home, you know, whatever. But I think it's direct communication is super important. And then just like to bounce off of that, telling them exactly what you need. I think it's sometimes hard, especially for guys, to like know how to support something like this. Like it's invisible, it's hormone related, like it just can be a little nuanced. So something that has really helped us is like, I'm like, hey, I'm I'm having a flare-up, I'm really not feeling good. Can you take this on? Or if he's not able to like take over a chore of responsibility for me, then like he'll communicate back with me kind of thing. Just both of us being very direct and like if we need to order out, we'll order out, and that's how we do that. And so yeah, I think I think the thing I wish he understood about living with Endo, that one's hard because it's like I don't know if he'll ever understand, truly. I I think the biggest one is that it's like when I say I don't feel good, I really don't feel good. Not that he doesn't believe me, he always believes me and he's always super like sweet and supportive. But I think there have been times and seasons where it's like, I just I don't look like I don't feel good. So it's like he almost in like a very sweet way, like wants to push me. Like he's like, oh, let's go work out, let's go for a run, let's like, you know, do these things that like might make you feel better. And I'm like, it's super sweet, and I know that you're trying to be really helpful, but I know that I need to like take a long nap or read my book all day or like whatever it is.

SPEAKER_00 35:31

Right. Like I think we've done a really good job of communicating a lot of the things to them so they understand a lot better. But again, they never live it like we are living it.

SPEAKER_01 35:40

Yeah.

SPEAKER_00 35:41

And also, like, I can wake up and it can look like it's gonna be a great day and nothing can happen, and I'll feel terrible like by late afternoon, you know? Like that's one thing of it's like I don't understand. Like you woke up, you did your work, yeah. Like, yeah, you had breakfast and now you like can't get off the couch. And it's like, yeah, it is just like I can't control it.

SPEAKER_02 36:02

Yeah, we have had those exact conversations. Yep. Yeah, it's very difficult.

SPEAKER_00 36:08

Yeah. Um, okay. This one we kind of touched on briefly is has endometriosis changed how you view your future? I think kids, career, lifestyle. I think like career-wise, like I wanted to be a lawyer so bad. I wanted to go to law school.

SPEAKER_02 36:27

I didn't know that.

SPEAKER_00 36:28

Oh my gosh, yes. I wanted to go to law school. Um, like a dream of mine. Belmont is where I went to uh college and they have a great law program. Like, I was set up to go to law school. Um and my mom was talking to me and she was just kind of like, Are you sure that's what you really want? Because it is a lot of school and it's a lot of hours. And like she knew that I wanted to have kids someday. Not that you can't balance the two. There's plenty of women that have very demanding jobs and also have kids, and they are just bosses in every aspect of life, but I am not that type of person. And with Endo, like I couldn't do a non-routine schedule of like a client needs me late at night or something happened in the wee hours of the morning that I'm needed for. Like it was just that was gonna be a way too strenuous career for me. Yeah. Yeah. Um, so I have no regrets not doing it because I am sure I would have done all the schooling just to be like, this is not for me. Like, I can't handle this lifestyle. So I will watch it on TV if I can and not be jealous of their lifestyle. Yeah. Yeah. That's how it affected my career. That's kind of that's probably the only thing. And then all of my jobs that I've had over the years have always been remote. Like I've never worked in an office, and I'm so grateful for that because I probably would burn through all of my sick days very early on. Yeah. Just with like not feeling good. Whereas remote work, I cannot feel good, but I can still sit in my home and get my work done. And no one will know the difference.

SPEAKER_02 38:00

Yeah, yeah. I would say I I have a very similar answer. I mean, I was working bedside when I got diagnosed, and I think I mean, really the surgeries, like I didn't really have intention of getting out of nursing until I had those surgeries. And I I I talked about this in another episode. I had like I had to quit my job. I had taken all of the leave that I possibly could, and I just was not healing, like I was not feeling better, and so it kind of forced me into a different form of nursing. That's when I went back and got like my holistic certification, got more into integrative medicine, opened my own little like small business, and so I think for me that's been like the biggest change. I always thought I would be a nurse like for 20 plus years, and now I'm not super sure what that's gonna look like. And we've been in a season where I've been able to be at home like without having to work, and it's been amazing. Like it has given me the time to heal and the time to rest. And I'm still you know pouring into stuff like this and my small business, but it's just the amount of work hours, it's it's a night and day. So yeah, I think it's been a really positive change in that way. It's just bedside nursing for me was was sucking the life out of me for lack of better terms. Yeah.

SPEAKER_00 39:17

Yeah, it's a lot. I think it's hard to have very demanding, long schedule, like physically demanding jobs with endo.

SPEAKER_02 39:26

Yeah. Yeah. And the there's this thing that we learned in nursing school, it's called compassion fatigue. And it's like, that is such a real thing. And it's like, I always want to be a nurse that has compassion. I mean, I was only four or five years in, five years in, and I was getting to a point where I was like, because I myself didn't feel good. So I'm like, this is really hard to have a lot of compassion for six other humans that I'm responsible for keeping alive.

SPEAKER_00 39:50

And I'm just trying to get through the day. I'm just trying to get back home.

SPEAKER_02 39:54

Yeah, I'm just trying to.

SPEAKER_00 39:55

Yeah. My head is not here right now. As far as like future planning and thinking about kids, I think we were both we touched on this of like we were upfront with our partners. Yeah. Of like, we have this disease and it can cause infertility. It can make getting pregnant difficult. Like, we were very open about that with the people before we married them, and that wasn't like uh a non-negotiable for them. Um, I think we just both go like go into the phases of fertility and thinking about starting our families and stuff, just like grateful that we know we have endo and are aware that it can take us longer and we might need more help than others. Um so I think it's almost like a blessing in disguise in that way of like if you are struggling to conceive, at least you probably know why. Yeah. As opposed to many couples that are struggling and they don't know why. Like they have nothing wrong with them. At least you can kind of like, it's probably like I'm the problem. I know I'm the problem. I'm gonna be the problem. Um so, yeah, exactly. Exactly. So I think it's just like, you know, something you have to go into with an open mind. And when you decide you're ready for it, just know it might not be this quick, happy, easy season. It might be challenging, it might be difficult. But all of the challenges and difficulties will ultimately bring you and your partner closer together, and it'll just like make your home a much more welcoming environment for a baby when you get blessed with having one. So I think you just have to have kind of an optimistic mindset around it. Cause we were both told either you won't get pregnant or it'll be very hard to get pregnant. So find a doctor that you like that will work with you who knows having kids is something you want, even if it's years down the line, but you can start addressing things now so that when you are ready, it doesn't take you years because you weren't preparing. I think you just have to start sooner than others of like preparing. Yeah. Getting your body in a place that it's ready to do that. And get your partner tested too, because it does take two, and you might think you're going to be the problem, and you might not be the problem. That's right. It might not even fall on your shoulders. Yeah.

SPEAKER_02 42:07

Yeah.

SPEAKER_00 42:07

I agree completely. Awesome. Um, okay, just a few more, and then we'll wrap up our QA session. So this is a fun one is how did you two meet and what made you decide to start the endo edit together?

SPEAKER_02 42:21

This is a fun question. We met. Oh yeah, yeah. We met in college.

SPEAKER_01 42:27

Yeah, first freshman year.

SPEAKER_02 42:28

Yeah, we just met with a group of friends. We were cliff jumping.

SPEAKER_00 42:34

That's right. I forget that's the first time that we met. Oh my gosh, that's so funny. I thought Reagan was in love with me, like actually. Because you were like holding my hand and wanting to show me something. Like, I think she has feelings for me.

SPEAKER_02 42:52

No, I was genuinely that is. Okay, fun fact about me, I'm terrified of heights. But the group that was going went to cliff jumping, and I I'm also, fun fact about me, very hard-headed. And I was like, I'm gonna be cool, I'm gonna cliff jump. And so that was what I was gonna do, whether I wanted to or not. And so Katie was there, she was the only other girl there. And so I was yes, a girl, like she's gonna get it, she's gonna know that I'm scared. And so I was just like, hi, be my friend.

SPEAKER_01 43:23

And that is so funny.

SPEAKER_02 43:25

You took that way differently, which was not true at all.

SPEAKER_00 43:29

What I intended.

SPEAKER_02 43:31

Poor little Reagan is just like nervous out of her mind, and it's like, oh, yeah, I don't even remember like what I said to you when I did, like I was so terrified of jumping off this cliff. I did it for Yes, we did.

SPEAKER_00 43:43

We did it. I think we both did it one time. And then honestly, climb getting back up the cliff was more daunting than jumping off the cliff. So I was like, I'm done. Yeah, yeah. Like there's no easier way to get back up. Like, no, I don't have like we met through like a mutual group of guy friends. Yeah. Who were like on the track team and like, you know, these tall lumber muscular who can like rock climb, and we're like, you think five feet of us is gonna climb back up this cliff now, soaking wet?

SPEAKER_02 44:13

Yeah.

SPEAKER_00 44:14

That was terrifying enough for me to do it again.

SPEAKER_02 44:17

It was also the first weekend of college. Um almost cliffs. It was like looking back, I don't know why I decided that was a good idea, but you know, I think once my mom found out, she was like never again. Yeah, it's kind of funny because I married someone who loves to do stuff like that. So now I do that regularly. In fact, I'm usually the one who's like, maybe we shouldn't do that. Like it's it's just funny because my parents always told me, You're you are the most adventurous. Like you're gonna have to marry someone who's not adventurous at all. And I did the opposite. Yeah. And so now I'm the mild one, and my husband's like, he has me jumping out of planes.

SPEAKER_00 44:54

Uh-huh. Yeah. He feeds the adventure side of you. He does not suppress it, that's for sure.

SPEAKER_02 44:59

No, he very much encourages. Yeah. To a point where sometimes I have to be like, no, that's a lot.

SPEAKER_00 45:06

That's actually insane.

SPEAKER_02 45:08

Like I'm getting older, the fear is actually kicking.

SPEAKER_00 45:10

Right. Yeah.

SPEAKER_02 45:11

Be alive for a little bit.

SPEAKER_00 45:13

Yeah. The injuries start to like really like put in your head. What could go wrong? A lot, actually, turns out. So yeah, we met in college freshman year. Um, we ended up being in the same sorority together. We lived together the second part of freshman year.

unknown 45:29

Yes.

SPEAKER_00 45:30

Which is a fun story how that came to be. So that's how we met. We've been friends for 10 years now. And then what made us start the endo edit, it was not too long after Reagan told me she was diagnosed with endometriosis. Yeah. That we I don't want to say like we really reconnected, but we started talking a lot more than we were because we were in different cities, different states, different time zones. Yeah. Um, she was doing travel nursing, like we were all like kind of focusing on our career for a little bit. We would still check in. We weren't like talking like regularly until you got diagnosed with endo when we had just so much to talk about.

SPEAKER_01 46:08

Really so much.

SPEAKER_00 46:08

Um, and then we were both like married around the same time. So it's just like, you know, life kind of brought us back together, not that we drifted apart, but no, yeah, but we started talking a lot more.

SPEAKER_02 46:19

And I yeah, I feel like the endo edit really came up super naturally.

SPEAKER_01 46:24

Yeah.

SPEAKER_02 46:24

We just I forgot which one of us, I think you probably threw out the idea of like, hey, what if we like do a podcast? And we because we were talking so much about what we talk about here.

unknown 46:34

Yeah.

SPEAKER_02 46:35

We were like, why don't we open this up to other people who might have endo? And I was like, that sounds awesome. And then it was just like logistically figuring out, like, like we you said, like we both were getting engaged, getting married, so the timing of when to start, and then that happened pretty naturally.

SPEAKER_00 46:51

Yeah.

unknown 46:52

Yeah.

SPEAKER_00 46:53

Like I created the Instagram, the endo edit, like two years ago with like no thoughts. Just like it was just probably one of those like manic episodes I was having before starting my period where I wasn't sleeping. And I was like, the endo edit, like I want to do something with endometriosis. I've always been so passionate about talking about it and educating on it. I just never had a platform for it. Just because like when I got diagnosed 10 years ago, there was nothing, no resources. Yeah. I'm just like this empty abyss of Googling and figuring out on your own. And I didn't ever want to go through the same thing that I had to go through to get to a point where like I'm living well again with endo. Um so I created the endo edit with like no idea what I was gonna do with it. And then yeah, I had this idea of Reagan, like, what if we do a podcast? And what do you feel about the name the Indo Edit? Because I know it's available on Instagram.

SPEAKER_01 47:48

Yeah, I've never been part of that. That's awesome. I love yeah, yeah.

SPEAKER_00 47:53

So I mean, it is kind of felt like, you know, God brought us together for a reason all those years ago. And like I hate that Reagan and I both have this disease. Like, my heart hurts so bad for Reagan when she said that she had it, but also what a blessing in disguise it is because it has allowed us to make this platform that neither one of us would have ever done, like on our own.

SPEAKER_02 48:12

I could not shout you out right now. Like, Katie is a social media tech whiz. I am I am not. It takes a lot for me to be able to post one thing on Instagram and like Katie just does it like she's a prof I mean, you are a professional, but yeah. So this it's crazy. I remember talking to my mom about this right before we started recording, and I was like, there is zero chance I would be doing this by myself. And I totally feel like it's divine intervention that we met all those years ago, cliff jumping, and now here we are. And honestly, thank God, like such a blessing.

SPEAKER_00 48:48

Yep, could not agree more. What's your friendship like outside of the podcast? We're very goofy. Yeah. Sure. If we were together, like in my wedding. Oh yeah. Yeah. And like, so there was a time it was one of our other good friends got married in Nashville, and you flew in, and our other good friend, like our whole friend group was back in Nashville, and they were all staying at my house, and I was with my husband at the time. Of course. Still in. My husband was also staying at the house with us because it's his home. That we were all crashing. Oh no. Um, and so they were, we have a guest room. So Reagan and our other good friend were in our guest room, but there was like the like every night we were together, we were all in my bed, and we're just like giggling and playing old Snapchat memories that are so cringy to like watch, but also so funny. And just like going through pictures and like all of the old memories. And I just remember like once you guys left, my husband was like, that was so fun to witness. Like, you guys were like little kids again. Like, we have to make a real effort to talk, but when we are together, it is truly the best time. Like, Reagan stayed at my house the whole week of my wedding, and after she was in bed with my parents, I was like, I'm so glad I had Reagan there because I would have been so like in my head and nervous. Like, I'm such a type A like planner. Like, if something went wrong, like then I wasn't like that whole weekend. We were just giggling and running around and having fun. And even the wedding day was just so fun. I was never like worried about like what if this goes wrong, or what if I trip, or what if my dress doesn't fit. We're a really good balance of like having fun, but then also when things are tough, like Reagan is a person that I can go to.

SPEAKER_02 50:36

Yeah. Yeah, I would say you're one of the first people I reach, probably the first person I reach out to when I'm going through something. But yeah, and then the same breath. It's like I think about your wedding week, and then just anytime I've come to visit Nashville or like back to our college memories, like it's just so fun and funny. Like I laugh until my stomach hurts so bad anytime I'm with you, and it's just so funny.

SPEAKER_00 50:56

Like we are just 18 again.

SPEAKER_02 50:58

Yeah, and it's like that honestly, I feel like it's so rare in friendships where you can just get together and be like so goofy and like kind of dumb and just be like, This is so fun.

SPEAKER_00 51:08

This is me in my rawest form. So innocent. Like it's just so awesome.

SPEAKER_02 51:13

You can go and just be who you are and not have to like think, just be. It's awesome.

SPEAKER_00 51:18

But it's a one in a lifetime friendship, that's for sure. I agree. We're very blessed to have each other. Oh, I wanna cry. And that is as soft as we'll ever get. Okay, someone asked about go-to self-care rituals when you're not feeling your best. We dive into all of that in episodes four and five. So I don't want to take a lot of time really talking about that. So if you are curious, check out those episodes. It's Living Well with Endo parts one and two. Okay, and then this last one, we're gonna end on a banger here. That is a question. I know who sent it. And it is can boys get endometriosis? So this is a question that required some research on our end. I know why she asked this because she had heard at one point, at one time after I got my diagnosis that they had found it in a male, and it is a predominantly female because you associate it with the reproductive organs that men don't have, um, and high estrogen levels that men typically don't have. But the short answer to this, and if you're interested in learning more, we could do an episode on it. It might be interesting, or you can do your own research. But technically, yes, boys can get endometriosis. Um, there has been a handful of documented cases of endometriosis in biological males. These are men that are born male at birth. There's no gender changing going on here, but it's incredibly rare and it's usually linked to hormonal factors like elevated estrogen that are typically caused by like a prostate cancer treatment. Like it's usually things that are being done medically to elevate their estrogen levels. Um, it could be diet-related. I know that they're finding the hops in beer are very high estrogen. So if your man likes to indulge in a couple 12 packs, he could have really high estrogen levels, that could very well, I suppose, give him endometriosis. I don't know how it presents itself in men, what body parts it's really like kind of growing on and being found in. But yeah, all this to show that it really is um a complex disease. Endometriosis is not just about having a uterus, clearly, if it can be found in men. But it is just a really complex whole body condition that I think still requires a lot of research to fully understand and wrap our heads around and hopefully find some real causes and and treatments. Yeah, that was a good one. However awesome. And on that note, yeah, that was a really good That's our QA session. So those were some good questions you guys sent in. I'm sure it won't be our only time doing something like this, but it was fun. Fun to kind of take a beat from the more research-focused and techie episodes and just kind of like have some fun. And you guys wanted to know a little bit more about who we are outside of this, so that's awesome. And next week we'll be back to our regularly scheduled programming of endometriosis-related topics. So around and thanks for tuning in.

SPEAKER_02 54:18

Thanks for joining us for another conversation on the endoedit.

SPEAKER_00 54:22

If this episode resonated with you, share it with a friend, a sister, or anyone who needs to hear they're not alone.

SPEAKER_02 54:29

You can find more resources, stories, and community at theendoedit.com or on Instagram at theendoedit.

SPEAKER_00 54:36

We'll see you next time, and until then, take care of yourself.