Catie Eichhorn shares about her diagnosis of endometriosis, undergoing multiple surgeries and finding hormonal medications to improve her symptoms. She opens up about how it has impacted her sense of self and her definition of family, and her joyful resilience in the face of a chronic diagnosis.
The Empowered Health podcast also has an endometriosis episode:
https://empoweredhealthshow.com/2019/07/21/ep-19-opening-up-about-endometriosis/
My Endometriosis online support group:
https://www.myendometriosisteam.com/
Contact Femammal:
If you have feedback or want to be a future guest, please get in touch!
Logo design: copyright Darragh Hannan
Catie Eichhorn shares about her diagnosis of endometriosis, undergoing multiple surgeries and finding hormonal medications to improve her symptoms. She opens up about how it has impacted her sense of self and her definition of family, and her joyful resilience in the face of a chronic diagnosis.
The Empowered Health podcast also has an endometriosis episode:
https://empoweredhealthshow.com/2019/07/21/ep-19-opening-up-about-endometriosis/
My Endometriosis online support group:
https://www.myendometriosisteam.com/
Contact Femammal:
If you have feedback or want to be a future guest, please get in touch!
Logo design: copyright Darragh Hannan
[00:17] Greer:
Hi, this is Greer, your host for Femammal, the podcast that holds space for women to explore what it means to live well in our bodies and celebrates moving through this world as female mammals. Today's guest is Catie Eichorn. Catie has been navigating an endometriosis diagnosis, officially for eight years. She is 32 and she's been married to her love for ten years. She has worked as an engineer, a nonprofit business manager, and currently a full time professor of business. She has two fur kids that keep her on her toes. She said that she is so grateful to share her story with our listeners. And I am so grateful that we all get to hear about her experiences with debilitating symptoms, multiple surgeries, hormonal medications, and how she has grown into a new sense of self and family through it all. Welcome, Catie. I'm so glad you're here. I am really looking forward to our conversation about your experience with endometriosis. And endometriosis isn't a diagnosis that most people are super familiar with. Can you explain what the condition is?
[01:45] Catie:
Yeah, definitely. Thanks for having me here. I'm excited to be able to talk to you about this and about my journey. Endometriosis is a reproductive diagnosis for a lot of different symptoms, and it impacts a lot of different reproductive organs. So what is actually happening is the endometrial lining inside the uterus, which is typically what is shed during the menstrual cycle, is actually growing elsewhere in my body. And this could be anywhere else. It could be on any organs. Most commonly, it's on reproductive organs on the outside of your uterus, on your ovaries, your fallopian tubes, things like that, and in any range of amounts will have symptoms. So just like any other endometrial lining during a regular menstrual cycle, not only would I shed my normal endometrial tissue inside my uterus, but these areas of tissue growing elsewhere in my body would also start to shed and bleed, and it will cause extreme pain in most cases.
[02:52] Greer:
Yeah, absolutely. What was your path to getting diagnosed with endometriosis?
[02:57] Catie:
It was a winding one, that's for sure. I didn't get diagnosed until maybe six years ago, I think. And the technical way, the only tried and true method of being diagnosed is actually through surgery. It's through usually a laparoscopic surgery where they'll remove the questionable tissue off of whatever organ that they find it on and do pathology to confirm that, yes, it is endometrial tissue growing outside of the uterus. For me, that ended up being my second abdominal surgery. So one of the first reproductive health issues that I actually had was ovarian cysts. So I've learned, and it's so weird for me to be talking to you about this, because when I first started having my period and going through reproductive health classes and stuff like that, I knew so little about how our organs work and how our bodies work as females. And just because I've gone through this, I've had to learn so much. And so I've had ovarian cysts since I was probably mid high school, I think, a while ago, so I can't remember totally. And the first one that I had was sometime in high school because I was still living at home with my parents, and I remember being curled up on the floor in extreme pain in the bathroom, calling for my parents because I couldn't get up. And it was on my right side, so it was my lower right abdomen. And of course, as a high schooler 15-16 years old, they looked up in their health book because this was before the Google and the Smartphones, the big book of health conditions that they kept in on the desk. So they looked up appendicitis, and the appendix is on your right abdominal side also. And so I was having these sharp pains on my right side. So they brought me into the hospital thinking I probably had appendicitis. And I did all kinds of tests and come to find out it was a ruptured ovarian cyst that I was actually experiencing in high school. And ever since then, I've had them on and off. So my first surgery was actually for a very large ovarian cyst that did not rupture but tore the wall of my ovary, and I was internally bleeding. They monitored it for quite some time, overnight, for maybe 12-18 hours, but my blood counts kept dropping, which meant it wasn't clotting on its own. And so I was either going to have to have a blood transfusion or they were going to have to go in and do surgery and get the bleeding to stop. I chose at the time surgery, so that was my first abdominal surgery. The second abdominal surgery was where I actually got the endometriosis diagnosis. I went in again for more abdominal pain, thinking that it was potentially a cyst. My doctor did confirm, I had two doctors confirm that it was a cyst. It was probably seven or 8 CM in size for scale. Our ovaries are only about two and a half centimeters.
Greer:
Oh, wow.
Catie:
My doctor actually recommended getting surgery, and he would be willing to do surgery on me because having them that large, there's a lot of risk for complications. I chose to do it at the time, and when he went in this time, so there was no blood, I wasn't bleeding out. He actually identified endometrial tissue that he saw on my ovaries, on my uterus and my cervix at the time. So I was not expecting it. I was not expecting a diagnosis. I didn't go in looking for being diagnosed with something new or having any other diseases or anything like that. But I came out from the surgery and he told me what he found and it kind of rocked my world.
[06:44] Greer:
Right. I mean, probably a lot of mixed emotions there because on the one hand, this new information that you're getting that can be very overwhelming, but also kind of a providential moment where you knew that you had one problem, but then there was this moment where you also got insight about something else additional that was going on.
[07:05] Catie:
Yeah. At the time, I think my husband and I were just starting to talk about having kids and conceiving, and we'd been married three or four years, and so we'd kind of starting to have that conversation. No doctor had ever said, I've asked multiple times with the history of cysts and every doctor has always said, oh, no, there's no reason, you shouldn't have trouble. But I had been having trouble. We had been trying and with no luck. And then I get this diagnosis and kind of then going back and questioning everything. Well, were they all lying to me? Did they just not know and not know what to say? So, yeah, definitely a lot of emotions. It answered a lot of questions, too. I should have started this whole conversation with, I am not a medical doctor. Right. But for me, in my head, my background is I'm an engineer, so logic and things fitting in boxes really helps my brain process, which is hard with these types of diseases. And for me, I started going, I think these cysts that I've been having that no one can explain are tied to this endometriosis. Because the other disease that's I would say more commonly known than endometriosis is polycystic ovarian syndrome, PCOS, which one of the main symptoms is ovarian cysts. I'd asked about this in my doctors, but no one will diagnose, That wasn't the right diagnosis. They said, that is the only symptom you have. None of the other indicators of that disease are presented in you. I don't think that's what it is. But no one could tell me why my ovaries choose to create these abnormal cysts where they're not supposed to be. Because Ovaries, they're naturally cyst producers. Like, that's how eggs are released. They grow a tiny little cyst and then the cyst ruptures and the egg drops. That's what the function of ovaries are. So mine are just acting abnormal and no one could explain to me why. It's common. Tons of people get them. And then I get this endometriosis diagnosis out of nowhere and going, maybe these are connected.
[09:21] Greer:
Yeah. It's helpful insight to realize that a lot of people who have endometriosis actually have a cluster of other painful conditions. So things like pelvic floor dysfunction or other inflammatory experiences like auto-immune diseases. Even though endometriosis is not an auto-immune disease, it can correlate with a higher frequency of auto-immune. There's so much going on there.
[09:48] Catie:
Yeah. I looked into that. Because obviously as soon as I got this diagnosis, I started researching it because my doctor that went in that time, so my second surgery, my first and second surgery were done by the same doctor. He's my gynecologist who does surgical, he's the surgical gynecologist. He did what was called laser ablation on the endometrial tissue where they take a heat laser or radiation laser and just irradiate the tissue away of where he can see the endometriosis. So I got pretty instant relief from symptoms that I didn't realize were symptoms. My periods were not extremely painful anymore. They still hurt a lot, but they weren't like crippling pain anymore. But it only lasted for a few months at that time. So in my research, looking all of this up, trying to figure out treatment, what do I do now? Autoimmune kept coming up. Endometriosis, like you said, is not currently classified as an autoimmune disease, but it mimics it. It acts a lot like an autoimmune disease in a lot of ways because they don't really know the mechanism of why the tissue chooses to grow, where it grows, how it gets there, and how ultimately to cure it. There is no cure for it. They don't know how to get rid of it. You can be symptom free for years and years and years, and then it can come back out of nowhere, right? And that's similar to an autoimmune. And the idea of people with autoimmune diseases who may be listening to this have the idea of flares. And if you do have an autoimmune disease, you know what I mean when I say you're having a flare. Endometriosis does the same thing a lot of times. Obviously, that coincides with a menstrual cycle, but not always. For me, it was typically movement, having too much movement or having too much repetitive movement in one direction. For me, a lot of times it was like stretching and twisting. The second surgery was actually spurred on by a round of golf. I played a round of golf and three or four days later, my abdomen was still just not feeling right. And it was to that point I'm like, this isn't muscle pain from playing a sport that I don't play very often. This is something else. And it was that twisting motion that just irritated it enough or flared it, I don't know exactly. But that definitely happens like an autoimmune for me. So we talked about the cyst. I also have what's called Raynaud's phenomenon. Fairly mild case of it, at least right now, where my fingers and my toes will, the blood, the blood will flow out of it, the capillaries will close. It's not just cold hands, cold feet, which is what I thought it was at first, but literally the blood completely eliminates from my extremities. It will turn freaky white. When people see it and don't know what it is, it really scares the crap out of them because my fingers turn so unbelievably white and I lose all feeling like I literally cannot feel them anymore. I've been lucky that it's always come back, and I've never had long term, prolonged instances. It also happens with me sometimes the other direction. Most of the time. It's like touching a cold doorknob or something like that. Mine also works the other way. So I'm a swimmer, that's my exercise of choice. And when I get into the hot shower after a swim, the hot water on my now cold hands will cause it. I'll see it happen with that way too.
[13:16] Greer:
Yeah. I am also a Raynauds sufferer and just got diagnosed this winter. And I think the most validating thing I heard is the nurse practitioner I was working with had a student with her that day and so she was so excited to show the student a classic case of Raynauds Phenomenon. And so she was demonstrating kind of what my fingers and toes looked like and at the time my toes were in a really bad state. And she explained that basically it's the same or similar presentation as someone with frostbite on their toes. And I just thought, wow, yes, that is the level of pain that I've been in. But I didn't know that there was a real medical evaluation of that. So just fascinating how all of these issues kind of intersect and overlap. And frustrating too, how little good research there is. For which of these. Is there maybe something underlying that's causing all of this? Is it just correlations? I mean, it's so understudied and frustrating. So how have you sort of sifted through your own health goals? Because it can kind of feel like whack a mole. Sometimes you're addressing one problem like you're addressing the cysts and then the endo rears its head. What's that experience been like for you?
[14:44] Catie:
It's definitely been very challenging and I would say until I found some community groups on the Internet, very lonely, I'm actually in several Reddit subreddits that are devoted to endometriosis and endo and obviously they have all the problems that social media can have of people just spiraling. But when you're completely alone in it, those types of groups of other people experiencing it have been very helpful. And they've also been really helpful in giving me options. When you don't even know what questions to ask your doctor, how do you even start? Like, when I got that diagnosis, I wasn't prepared for it, obviously. And I was also just coming out of surgery. I just had surgery and my husband was with me, but he wasn't prepared. And so we left and like three or four days later I'm like, man, I wish I would have asked all of these questions because at the moment there is no way I could form them because I didn't know enough about it. So a lot of research on the Internet is mostly where I've been spending a lot of my time. There's a Facebook group that it's like a private one, it's called Nancy's Nook. I'm not sure how useful it is these days, but eight years ago, when I was first starting this journey, six, eight years ago, it was a really useful place for me. Doc had specialists because my gynecologist that did the original diagnosis, he's not a specialist in endometriosis. I'm sure he's seen it because he was one of the few doctors at my OBGYN that didn't do OB. He was just a gynecologist, so I'm sure he saw patients with it, but it wasn't his specialty. In something like this, where there isn't that much research, there's not a lot of funding going into learning about it. Finding a specialist who really knows what they're talking about is very challenging, and I'm actually still navigating those waters. Now, I've had another surgery since then, so I've had a total of three abdominal surgeries at this point. The third surgery was very much I knew it was endo. I knew it wasn't a cyst. So I had been prescribed medication after my second cyst to help keep that from happening again. And as far as I was aware, it was working. And I had had ultrasounds and things like that to confirm that, yes, there are no cysts, but I was in extreme pain, so the only option in my head was the endometriosis is back. And finding that surgeon that did that surgery was very challenging, very scary to have to just cold call a doctor's office and be like, trust me. Can I please get an appointment? Going into that appointment, so this is a specialist, he's not a primary care gynecologist. He really only does surgeries. He literally wrote the textbook on a lot of the different type of laparoscopic techniques they use. He had had experience with endometriosis, and I went to have surgery with him, and I thought that was a good chance that would be my last step, but unfortunately, it's not. He did a really good job, and he gave me about four years of pain free life back. But going into that appointment, I brought all the stuff from my previous surgery where I'd gotten the diagnosis. I brought the gory pictures that they give you at the end of surgery. If you haven't had one, they send you home with the pictures of your insides. And I brought the doctor's reports from the surgery and everything, and I gave all of that to him, told him about my symptoms. And that doctor just looked at me and goes, well, they didn't do pathology, so there's no way to know if that was endometriosis.
[18:26] Greer:
Oh, that's crushing.
[18:28] Catie:
And he literally got up to walk out of the room, and at this point of my disease, I could barely walk. I still remember being at that doctor's office and getting my weight and my blood pressure and all that good stuff. And then the nurse took off down the hall and turned around because I was walking so slowly, right? And it's like, oh, are you okay? And I was like, I'll catch up. Just tell me what room. I'll meet you there, because I couldn't move. And this doctor is getting up to walk out because he didn't believe me. And at that point, my husband was with me and every other person I've ever talked to about this kind of stuff always said, bring someone else with you, a trusted friend or family member. Yes, because I was in shock. I'm in tears because I thought this was my salvation. And my husband finally goes, well, if we wanted to move forward with you, what would the next step be? And the doctor goes, well, we'd have to do a physical exam. My husband goes, can we do that today? And doctor is like, oh, yeah, sure. Here's a dressing gown, and I'll be back in once you're ready. I would have never asked those questions. I was just in complete emotional shock of the effort to just get to this building, up the stairs, down the hall. Yeah.
[19:45] Greer:
And can we just validate for a moment that you shouldn't need to ask those questions? There should be a level of training in bedside manner that offers options rather than just shuts down your curiosity and your needs. But I'm so glad you had your husband there that day and that he sought to ask that good question.
[20:02] Catie:
Yeah, absolutely. It was wild. I mean, it's not that I've had amazing doctors my whole life, because I haven't. I've had good ones, I've had bad ones, but I've never had someone that brushed me off so lightly. I've been lucky in the case that most of the people, the doctors I've interacted with have never treated me like that. So when he did that physical exam that day, he knew exactly where to look on the physical exam. And it was one of those moments I was crying out in pain with tears down my face before I even knew what was happening during the exam. I had had physical exams for endometriosis before, but nothing like this. And as soon as he did, he's like, oh, that's endometriosis. We need to get you in for an ultrasound. Because at the time, I had had bowel symptoms, and he wanted to see if it was attached to my bowel. And in that case, it was. And the whole process then started. But if my husband hadn't asked that question, I don't know where I would be today. I don't know if I would have had the courage to call another doctor right after that.
[21:08] Greer:
Yeah, the door slammed in your face just undermines your whole confidence in your own understanding of your body, listening to your own body. That can be so hard.
[21:21] Catie:
Yeah, it still is at this moment in my life right now. Two weeks ago, I had another ruptured cyst, which means the medicine that I've been on is not working anymore. I hadn't had any reoccurrence of cysts, and so I'm on the next journey of, okay, what do we do now? And it probably means the endometriosis is back. I'm still dealing with pain since then, and I'm still going, what if I go see another doctor and they tell me nothing's wrong? I still have that loop playing in my head. Even though everyone's like, Catie, with your history, that's crazy. No one would ever say that to you. But after that experience, I'm just like, but they can. And what's going to happen if they do is it just going to reiterate that I'm crazy, but it's that self talk and having to really work through that and trust that you know what feels right in your body and what doesn't feel right. For me, one of the things is validating pain. Because of this journey, I've developed an extremely high pain tolerance. Living with a two to three level on the pain scale every day is nothing to me. No one would even know. No one would notice. My husband wouldn't even notice that I'm having that because it's just become so commonplace for me. But validating and going, the level of pain you're supposed to live with naturally is a zero.
Greer:
Right.
Catie:
And recognizing that just because I can tough through it doesn't make it okay, because right now, that's where I'm at. So I'm going, Well, I can still walk. It's not so bad. I can still walk. I can still take the dogs, I can go for short bike rides, and it doesn't bother me. That's fine. But that's not okay. No, that's not okay. Your body is telling you something. You need to listen and decide what you're going to do about it, because your decision could be nothing, and that's not a wrong decision all the time. But you just have to evaluate the, for me, I just have to evaluate the options that are out there. Because doing nothing is an option. It has consequences, just like going and having surgery has potential consequences and risks and have to evaluate all of those types of things, which is overwhelming. Ten years into this journey now, it's not as overwhelming as it once was. It feels a little bit more routine, which also makes me sad that I got four years this time. That's pretty good because it's the longest I've had so it's the longest time since the first surgery that I've had where I really haven't had any, haven't had any symptoms for the past four years, which has been wonderful. Next steps.
[24:17] Greer:
Yeah. Your journey is so convoluted, and you've had to definitely think about your goals at every step. So in that first surgery, you learned that you had endo. But they didn't do anything about the endo initially. They just took care of--
[24:33] Catie:
No, the first surgery, they couldn't see anything. The first surgery, I had lost almost two pints of blood into my abdomen.
Greer:
Wow.
Catie:
And so the first surgery, I don't know if the endo was there. I don't know what was happening. The first surgery was really I don't want to say life saving, because that feels very dramatic. And that's not the experience that it was, but it was to go in and stop myself from bleeding into my abdomen.
Greer:
Right.
Catie:
What's really weird is our bodies are very fragile in some ways and very tough in some ways. And so when they went in that time, they had to clean out all of the blood, because wherever the blood that had bled into my cavity was at was painful because you're not supposed to have blood in your abdominal cavity, and it hurts when it's there. And then because the cyst, that was the largest cyst that I've ever caught, been able to catch on a screen, it was close to eleven or 12 CM, was so large. The skin it's not skin, but like the sac, the tissue that was the outside of my ovary was so stretched, they couldn't really divine or see anything other than clean up blood, irritated organs, and that was it.
[25:50] Greer:
Okay, so surgery number one was all cyst focused?
[25:55] Catie:
Yeah. And that one went through the emergency room.
Greer:
Wow.
Catie:
I went in because it was that evening that it happened. It woke me up in the middle of the night. And the pain, because I knew at this point I'd had ruptured cyst before that didn't require any intervention, but just pain. So I knew what a ruptured cyst felt like. I was like, It doesn't feel quite like that. But it kept moving. The pain kept moving, and it was kind of in my back. And so I'm thinking kidney stones or something like that that I'm like, okay, maybe they just need to pass, and the pain got to be too much to bear. And so I go, well, if I go to the hospital for this, there's nothing they can give me but maybe some pain meds to help me pass them. So I'm like, let's go to the ER. And when they did the scans at the ER, they found blood and the rest is history. But that one really was more of an emergency level type of surgery. I got admitted to the hospital via the emergency room. Talk about an expensive doctor visit.
Greer:
Wow. Yeah.
Catie:
So then the second one was when the endo was diagnosed. Now, I'd had symptoms on and off, things that I thought were normal in my life for a lot of years leading up to that, but I had never gone to a doctor for it because I didn't think anything of it. But it was diagnosed, that second surgery.
[27:11] Greer:
What were some of those symptoms that you thought, oh, that's just normal.
[27:14] Catie:
That's just well, the very first one, looking back on my life of reproductive health since hitting puberty, one of the things that I now think was really weird was I was prescribed prescription level pain medication in grade school.
Greer:
Wow.
Catie:
Because my periods were so unbelievably painful that I couldn't go to swim practice. I was in tears in the evening. By the time I got home, my parents at that point had recognized that I had a decent pain tolerance. So it was weird that I would complain so much of things hurting. And like, Midol and the regular pain relievers you take as a 6th, 7th, 8th grader did nothing. Did nothing to help. And so my mom took me into the doctor and they prescribed me prescription strength like Aleve. And since then, that was the only thing that really could help during my periods. And that's the first thing. After looking back on all of this, I'm like, that's weird, to think that they're prescribing prescription pain medications for a natural process to an 8th grader.
[28:19] Greer:
Right. Because no one was really asking the question, what does this pain mean? It was really just about treating the pain at that point.
[28:26] Catie:
Yeah. You're a girl. Periods are supposed to be painful. It's just normal. It's terrible since that experience. Right. And my mom obviously started there, because when you first get your period, all of those feelings are strange and weird and new, and you think they're ridiculous. But after a while, my mom knows me. She knows that I was an athlete. She knows that I knew how to push through things if I had to. And I kept complaining about it. She took me in. I'm very grateful for her, for her listening to me taking me seriously. But since then, I've had not just painful periods. Extremely heavy, very long, seven, nine days long periods. What really surprised me was the bowel interactions. Now I don't know that I'd be able to pinpoint when I really started identifying that my bowel movements were not normal. I just thought everyone had painful bowel movements or didn't go for several days and then would go, like I just thought that was normal. Girls are weird. Girls are inconsistent. That's just how girls are. Come to find out, that's not true. Or not always true. And it wasn't for me. It ended up being for me, it was endo related. As soon as I had that third surgery and they removed the endometrial tissue off of my bowels, my colon and stuff, all of those symptoms are gone. I haven't had any reoccurrence of anything like that since then, four years. So I'm like, oh, my gosh, I was so wrong.
[30:04] Greer:
Yeah.
[30:07] Catie:
Just recognizing that, I'm sure there were others, now that I think about it, the other big one for me, in my last experience, before my last surgery, it was fatigue. I had extreme fatigue. And I always just chalked it up to the fact that I was in pain all day. But now I recognize that it was in and of itself, its own symptom.
[30:31] Greer:
And did the surgery improve your fatigue?
[30:34] Catie:
Oh, yeah. Improved my energy levels. I still enjoy naps, but I don't need naps anymore. Before, it was literally like, I would get home from work and I'd literally have to go straight to the couch, and my husband would just have to wait on me hand and foot because I was so exhausted that the thought of having to get up was miserable and painful. So they did work hand in hand. I know other people that have endometriosis. I have not experienced this yet, but now I look out for it is brain fog because there is some research out there that shows that there is obviously some type of hormonal interaction happening. It has to do with reproductive health, and so hormones are definitely involved somehow. And so some women experience painful migraines or brain fog, things like that, that are hard concentrating if they get really out of balance. It also depends on the severity and the location. Some women have found it on their diaphragms and outside. Most, over 90% of all cases are within the abdominal cavity, but it has been found in very small, rare cases on your diaphragm and outside your abdominal cavity, which could cause breathing issues. But it's, again, one of those things like, no one's going to ask that question. And in my head, I'm a statistics person, so I'm going that should not be the first question you ask. If you're having breathing problems, do you have endometriosis? If you rule out a bunch of stuff, you got to start getting creative. But there's so much that me as the patient, I have to know, and the availability of that information at a level that I can understand. Having not gone to medical school is limited because I have found some research papers and things like that online that I can stumble on, but I can't decipher them. I try. I like to think I'm a pretty intelligent person. Bachelor's in engineering, Master's in business. I'm a pretty book smart person. And it's medical language. I don't speak that language, so it's like trying to read a paper in Spanish for me. I can't read it, but that's all that's out there for me.
[32:50] Greer:
And honestly, even for people who are trained gynecologists, this was not something that medical school curricula put a lot of time into. There's plenty of gynecologists who, if they did their studies in a certain decade, they just didn't talk about endometriosis much at all. And the studies are starting to come more often, and people who are really keeping up with new studies are maybe learning more. But I almost feel sorry when I go to a new gynecologist for them because I'm bringing a cluster of concerns that in my case has not been surgically diagnosed as endometriosis, but is probably endometriosis, and it's just a problem that they didn't get enough education about themselves. Can you talk to that experience of going to different doctors who have different treatment philosophies? I mean, you talked about your ablation surgery where they go in with a laser and they burn it out. But then was your other surgery more of an excision? Did they cut tissue out?
[34:01] Catie:
Yeah. So my first surgery was ablation. And that's because the doctor that happened to be doing the surgery wasn't trained for anything else. That's the only training. That's his only way that he knows and is confident. Because I'm a sensitive person. That's just part of my personality. So I feel for my doctor in a lot of ways, because he can know about excision and can know that that's the right treatment. But he could also recognize I haven't been trained in that. I can offer you this. It might help for a little while, and this is what I can do. But I know that excision is right, but I can't do that for you, because that's pretty much what he said. He did the ablation when he found it, because, again, we weren't expecting to find it. We weren't going in there looking for it. We just kind of stumbled on it, which was very lucky in my case. After about six, eight months, I started having symptoms again. I went into the doctor and he goes, yeah, there's a good chance it's back. There's no way to know, but we can go back in. And he always called it, he goes, I can tidy up a bit. I'll take the laser and tidy it up a bit. But that's all he would offer. And after doing my research, knowing that the laser ablation is not the best treatment, research has shown that it's not the best treatment for endometriosis because it doesn't remove all of the buried tissue. And so I went on a hunt to find an excision specialist that would do excision. So this last surgery I had, I ended up having two surgeons, because they did find that the endometrial tissue had adhered my cervix to my bowel, so there was tissue connecting my cervix all the way up to my bowel. It was the first time I had ever been in an ultrasound. So those of you who have may not gone through reproductive health that are listening, an internal ultrasound is where they put the wand up inside of you to do the ultrasound instead of just on the surface like you see for babies. And so that's all I've ever gotten, because it's the only way to really look at your ovaries. And this is the first time with this doctor, this excision specialist, he had me schedule this ultrasound when he could be in the room for the ultrasound.
Greer:
Wow.
Catie:
I had never been with a doctor who was present for an ultrasound. Normally, it's an ultrasound tech. They run it. They record the results, they send to the doctor. You go to the other room, the doctor meets you there, and you review the results just like any other lab test. But this doctor, he was like, no, I have to be there. And what he was looking for was motion on the screen so he could identify all my different organs. And he knew that when the wand got pushed one way or the other, the organs should slide, like they should move, you know, in a certain direction relative to one another. And mine did not, mine moved synchronized, and it was because they were attached. And so that required me to get another surgeon, because this surgeon, he was only comfortable operating on gynecology related organs. He was not comfortable operating on gastroenterology. So then I had to go to another surgeon who would be in the room to do the surgery on my bowels or my colon or whatever it ended up being attached to. And so that was a whole other journey. And so now I have these two surgeons that are technically specialists, and they did excision, and they did excision the right way. What he says that he did, obviously, I was unconscious, so I don't know what actually happened. He would cut and remove tissue, and they actually had the pathology microscope and things right there in the operating room. And so he would cut and inspect, cut and inspect, cut and inspect, and remove and inspect, remove and inspect, and pretty much until he got clean tissue. So he ended up removing my entire wall of my cervix and several other organs had stuff on it. And then I was very lucky in that my bowel interaction was not as bad as it could have been. They didn't actually have to cut all the way through my bowel wall, because that leads to a whole other slew of risks. He was able to keep it from going, perforating the full wall of my bowel, but the excision and then so that's why one of the reasons he told me when I came out of that surgery, I asked him about it, what's the success rate? Am I going to be back here in two years? And he pretty much he said he goes, where I cut it out, I am confident that it won't come back, but I can only cut out what I can see, right? And that's how I've started explaining it to people. I go, when you have cancer and someone gives you a cancer diagnosis, you go in for the MRI or the CAT scan or these 3D scanning tools where they can scan through your tissue and identify problem cells, anomalies, things like that. There is no scan for this disease. There is no research, no way to identify it unless you can physically see it. And that's why the diagnosis method, the official diagnosis method, is only through surgery, because it's the only way you can see it. And so that's why I was hoping, I mean, there was always that part of hope that maybe it won't come back, because if you get all of the cells, everything, there is a good chance it won't come back, but there's no way to know if you got everything. And so four years is pretty good. My gynecologist I have now she's pretty darn confident that it's back. With the number of times I've been in and the symptoms I'm having, and in all of the possible treatment plans going forward, they get riskier and riskier. I tell people I go, I go on the lowest risk treatment plan. And that worked for quite a few years. And when it stops working, your next options aren't as low risk.
[39:50] Greer:
How do you think about goal setting for what you want to focus on and what you are willing to take a risk on?
[39:57] Catie:
Yeah, that's a really good question, because unless you've been through a journey like this, you've probably never had to face it. So the medicine that I'm on for cysts, it's birth control. It's birth control every week. I don't take a week off. I stay on it. So I haven't had a menstrual cycle in over five years, probably maybe six. I don't know. It's been a while. That's not working anymore. And the risk so staying on long term birth control, my doctor recommended it because of the cysts. I think the best treatment for your overactive ovaries making these cysts is to suppress their natural function, suppress the cyst function to keep you healthy. And when my husband and I, we discuss this, there is risk to taking birth control long term. There is risk to having hormonal drugs going into your system for a long term. What are the pros of doing it that way versus not and really meeting? For me, I'm a God-fearing woman, so a lot of times it involves praying and just trying to find where I find peace. The peace isn't always a comfortable peace, but it is a peace for me. At that time, we decided that the risk of going on the surgery table was too great, because at that point, I'd had two within two years. And that was riskier, because for us, we look at surgery, you hear about it in the news all the time, like, you hear about surgery and it's on television shows, and they have all these doctor shows that show it. But there is a machine breathing for you. This isn't just playing doctor. There is an anesthesiologist, and their job is to make sure you stay alive when you're in there. So the risk of not waking up is very real. Every time I have surgery, and I don't take that lightly. At that point, that risk of being on that surgery table was way too great. Let's take the medicine. And in our head at that time, the medicine, we can always go off of it. If we change our mind, we can always stop. But then the medicine started working, and I'd stopped having cysts. I'd stopped having reoccurrence of this problem that I've been having for, this reoccurring problem that I've been having for years. And so we just stayed on it. It took me a few different medicines to find the one that worked for me because hormones are a full body experience in most cases, not just your reproductive organs, but your mental health, other physical health, things like weight gain, acne, things like that can also happen for me. Mine was my mental health. Some different levels and different types of delivery of the hormone could really mess with my head. And being aware of that, that was the other thing. It's just I had been around the block enough times that I knew to look for those things, but it's not like a doctor told me, hey, if you start feeling weird and don't understand where your thoughts are coming from, that might be the medicine. No one said that. It was just one of those things that I had enough experience with the medical field to know that that could be a problem. I think sometimes that is also a challenge that the doctors and again, I'm a sensitive person, so I feel for them. They don't know how much to "scare" us. I'm using air quotes for that. With what they prescribe, they obviously have to tell us the risks and stuff of what we're choosing to do, but they don't give you all the gory details. And it's probably, in some cases, to protect us, because our brains aren't always good at processing all of that information all at once. But then I'm also going, Well, I need that information eventually. And I don't know our medical system the way this country does medicine in the US. It's not set up to have that relationship. It's not set up for me to receive the information and then process and be able to have access to medical help readily after processing for a few days. It's not designed to support that type of thing, which then leaves you alone and having to figure it out on your own. So really weighing what we want, I mean, with reproductive health, one of the questions that was very hard for me and my husband was really addressing what family looks like and what does our family look like going forward? Because obviously, our struggles to get pregnant were not this unknown diagnosis anymore. We had been to a fertility doctor and tried some fertility medications with no luck. And again, it's all out of pocket. None of that's covered by insurance. And now I know I have this other risk if I go off of birth control, and then I shoot myself up with more hormones, with fertility. And honestly, my husband has been one of the strongholds in this, because he tells me I'm more important. I'm more important than any possibility of children at this point, because we don't know there's no way to know if my womb would ever bear. In the heartache of the emotional pain of that journey, and then as the female, the physical of all of the medications and the appointments and everything that you have to go through to get pregnant when you have trouble. It just wasn't worth it for us. And it was a decision we came to together. And again, it was around that peace. When we finally let ourselves be okay with that choice, we found peace. And so we knew that was the right place to be, that maybe biological children are not for us, and that's okay. And that is a very scary feeling in a culture we live in these days. And especially being a Christian woman, really having to redefine in myself what wife looks like, what family looks like. And I'm still working on it today, but I'm in a place now where I could come to you on this podcast and talk about it. When I can say when you're in the midst of that, there's no way you could be having these conversations because it's so raw and so intimate that it's painful. The emotional pain almost becomes physical pain, and you can see it on your spouse's face. And it's also your health issue. It's this web of having these emotional conversations, but then also knowing it's not just the what ifs, it's my physical body that is also having problems that I'm also having to deal with. It's lonely. It's isolating. It's isolating for both me and my spouse. I think there were a lot of times where we both felt very isolated in the journey, and we're very blessed that we were able to find support through that. I tell people I had a spiritual director when I was getting ready to go into fertility medications, and I don't know if I would have come out of it in as good of shape as I did had I not been in that type of therapy mindset. I don't know if I would still have hope and faith the way I do if I didn't have a pastor in my life that told me, you taking birth control is not an act against God. It's an act for your health. If I didn't have those few moments in my journey of trying to really redefine what my life is going to look like, I don't know what life would look like right now. I don't like to think about it because I think it would be pretty dark. And I just recognize how blessed I was to have those moments because I know not everyone is as lucky to have those figures in their life that so willingly and unconditionally love you for you and not for what I could become. And it was one of those I had to learn what they saw. I had to learn that I had to love me as me, not me as the possible future mother. I had to love me as me, not me as the possible healthy person in the future, but love who I was. And I had people who did that already in my life that I was able to mirror in really changing my perspective because it was the spiritual director at the time. She goes, this isn't little stuff, this is big stuff. You're having to redefine your identity, and that's really what it was. So you've termed it in terms of goal seeking and how do you relook at goals for your life. But for me, it had to start with the identity of who I was, because once I changed that perspective, now the goals automatically look different because I'm a different person. And it wasn't as big a deal changing those goals, because I'm not the person I thought I was. I'm this new, better, improved person. At least I think so. And that person wouldn't necessarily want those goals. It's a little bit different perspective on that.
[49:18] Greer:
Thank you for sharing that. That's so beautiful and so hard and so vulnerable. And I'm hearing the joy come through now that you've been this far on the road and it's a continuing journey, because this is a chronic condition, I'm wondering what are some of those things that you celebrate now about where you're at in your health journey?
[49:40] Catie:
Well, it's funny that you asked. I'm actually going to get a tattoo today.
Greer:
Awesome.
Catie:
Yeah, I'm pretty excited about it. And it's going to be the word 'strong girl.' The word 'strong girl,' that's what my husband calls me when I'm having a moment. He looks at me, he goes, you can do this, you're my strong girl. And that's really where the joy is for me, because as I shared earlier, this exact moment, I'm restarting the journey, it feels like. And it's so deja vu of what I went through four years ago. And I know what that took. And so for me, getting this tattoo right now, I can celebrate. I've done this. I am stronger for it. And it's what I tell people when I tell it to my friends, I tell it to my coworkers. They probably get sick of hearing it. I go, it is hard, but we can do hard things. And that's kind of the reminder for me and where the joy comes from this journey. This new doctor, so I'm going to another new doctor here with this new ruptured cyst and continued pain and finally, not denying the symptoms I've seen for the last six months. It's five and a half hours away. The specialist director of an endometriosis unit. So I'm like, okay, we're going. It's five and a half hours away and I'm going. What if they say, there's nothing wrong with me, all those emotions that I had before? But then this tattoo is going to say, but you're a strong girl, you can do this. You've been through hard things. I don't live near family where I'm at here in Louisville. My family all lives at least two state lines away. So it's really like my family unit is just me and my husband a lot, if not all of this journey has just been the two of us. Not that my family doesn't support me and love me and all of that. It's just they live two state lines away. We can do this. That's kind of where I'm at, the resolution of, well, okay, this is the cards I was handed, and now it's time to play the game just like anything else. So it's a lot of hard work. One of the things that when people ask me questions like that, I say happiness is hard work. Television and culture makes it look like happiness. And things that are exciting and joyful and fun are just handed to you. But in reality, at least in my reality, that is not the case. If I want joy or if I want happiness, I have to fight for it. Sometimes it's a mental fight, sometimes it's a physical body fight, but it is a fight for it. And my experience in life, it's worth fighting for. So that's where I'm at.
[52:19] Greer:
Wow. Well, you are definitely a strong girl, and thank you so much for also being so brave in sharing so vulnerably your story today. I'm definitely holding you in my heart as you keep taking steps forward on this journey. Thank you, Catie.
[52:35] Catie:
Thank you, Greer. And thank you for having me.
[52:42] Greer:
If today's episode resonated with you, I'd love to hear from you. You can email me at femammalpodcast@gmail.com that's femammalpodcast@gmail.com. You can also follow this podcast on Facebook. Just search for Femammal Podcast and you will find a community of people who are interested in living well in our bodies. And of course, I'd love for you to rate this podcast and leave a review wherever you download your podcasts. Until next time, be well.