Vascular Compression Syndromes Can Mimic Endometriosis Pain

Pelvic pain after endometriosis surgery can feel like the cruelest plot twist: you found the specialist, went through excision, did the recovery work, and you still do not feel right. When that happens, most of us get pushed toward the same conclusion: the endometriosis must be back. I sit down with my close friend Chelsea Taylor to explore a different possibility that too many endometriosis patients never hear about, vascular compression syndromes and how they can mimic, worsen, or even drive chronic pelvic pain.

Chelsea shares her lived experience with May-Thurner syndrome, nutcracker syndrome, and the long road from years of gaslighting to the right imaging, the right referrals, and finally treatment that restored her day-to-day function. We get specific about what symptoms can overlap with endometriosis, including pelvic heaviness, leg pressure, fatigue, brain fog, pain with standing still, bladder sensitivity, and back or flank pain. We also talk through what a venogram is, why MRV and specialized evaluation matter, and what it is actually like to have venous stents and follow-up care.

We zoom out to the bigger picture of pelvic pain generators: endometriosis, pelvic floor dysfunction, nerve issues, central sensitization, connective tissue disorders like EDS, and dysautonomia or POTS-like symptoms that can muddy the waters. You will leave with practical language to bring to your doctor, a few clues that may suggest a vascular component, and a reminder that better outcomes often come from asking better questions, not rushing into another surgery.

If this helped you, subscribe, share it with someone stuck in the loop of “maybe it’s just endo again,” and leave a review so more people can find the conversation. What symptom are you rethinking after listening?

Transcript

Pelvic Pain That Comes Back

SPEAKER_03 0:00

Pelvic pain after endometriosis surgery can feel like the ultimate betrayal. You did the research, you found the specialist, you went through surgery, maybe even more than once. So when the pain comes back or never fully leaves, the immediate assumption is the endometriosis must be back. But what if that's not always the case? Today we're talking about something that's often overlooked in the endometriosis world: vascular compressions, specifically Metherner syndrome, and how it can mimic, contribute to, or even drive persistent pelvic pain. For many people living with endometriosis, the instinct when symptoms return is to rush towards another surgery. But what if the next step isn't another operating room, but a deeper investigation into other pain generators? Because not all pelvic pain is endometriosis. And if we want better outcomes for this community, we have to start asking better questions. So stick around. Welcome to Indobattery, where I share my journey with endometriosis and chronic illness while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience, and hope. From personal experiences to expert insights. I'm your host, Alana, and this is Indobattery. Charging our lives when Indometriosis drains us. Welcome back to Indobattery. Grab your cup of coffee or your cup of tea and join me at the table. Today, my guest is someone who wears a lot of hats, most of which she didn't exactly apply for. Chelsea Taylor is an Indo warrior who, like so many of us in this community, has spent years navigating the confusing maze of chronic pelvic pain, surgeries, unanswered questions, and the frustrating reality of symptoms that don't always fit neatly into one diagnosis. At some point along the way, Chelsea did what a lot of us end up doing. She became her own researcher, investigator, and professional. This doesn't feel right, question asker. She's also one of my closest friends, a fellow board member and our nonprofit, and someone who can send you a research paper, a meme, and a voice note roasting the healthcare system all within five minutes. Chelsea's journey has included looking beyond endometriosis when symptoms persist, which led her down the rabbit hole of learning about things like vascular compressions and Mae Turner syndrome, something many patients are never even told to consider. And while she is currently in nursing school, which feels like a very logical next step for someone who's basically been forced to learn half of medicine just trying to survive their own body. Today she's here as a patient sharing her experience and perspective. She's also one of the smartest, funniest people I know, which means this conversation is probably going to include equal parts learning, validation, and likely a little sarcasm. So please help me in welcoming Chelsea Taylor to the table. Thank you, Chelsea, for coming back to the table. It's been such a long time since you've been here, and I don't appreciate that. I'm just putting that out there. We've been trying to make this happen for like so long, and it just has not come together.

SPEAKER_02 3:31

But here we are. Here we are. We finally made it happen. Yeah. Happy to be here. Thank you for having me back.

SPEAKER_03 3:36

You know that I would have you all the time if I could. I know.

SPEAKER_02 3:39

I know.

SPEAKER_03 3:40

But apparently you have to go to nursing school. It's slightly ruining my life, if we're being honest. But it is fun. So it is fun. Yeah. For those that don't know who Chelsea is, Chelsea is like one of my best friends in this whole world who I've met because of this disease. And so I met her with the nonprofit that we run together. And then it just kind of like trickled into this amazing friendship, sisterhood, like work-wife relationship where debauchery.

SPEAKER_01 4:11

Debauchery.

SPEAKER_03 4:12

A lot of debauchery.

SPEAKER_01 4:13

A lot of debauchery.

SPEAKER_03 4:15

We get in a lot of trouble together. We're not known for being filtered. Or quiet. Or quiet. Yeah. And we're known to corrupt people for karaoke. Yes. Oh yeah.

SPEAKER_01 4:27

At any point in time. And a little twerking sound. A little twerking. You never know what's going to come from much.

SPEAKER_02 4:32

You never know what's going to happen.

SPEAKER_03 4:33

But before we get started, one of the things that we talk about is like our drink orders. And I can just go ahead and tell everyone what our drink order is. Probably no. Yeah. We really need to be sponsored. Just peachy from Ziggy's.

SPEAKER_02 4:46

The best drink in the world. I blame Alana. Like I would have so much more money in life if it wasn't for Alana introducing me to these drinks. Because I I don't know, it's been like three years, four years since you introduced me to it. And I can't even fathom how much money I have spent on just peaches in my life. And I have corrupted a bunch of other people with it too. So all of my other friends love the Jess Peaches. You're welcome.

SPEAKER_01 5:11

They're delicious. So you're welcome. Ziggies. Ziggies. Still waiting.

SPEAKER_03 5:16

Still waiting for that sponsorship to come through. It's fine. Yeah. So okay. So now that we have and it is an energy drink, which we don't need and yet we don't need. Like it's kind of that like good energy.

SPEAKER_02 5:28

It just kind of makes me a little more squirrely than normal, but that's fine. It's fine. It makes it fun. But it's tasty. Yeah, it is fun. So and it's delicious. And it is delicious.

SPEAKER_03 5:38

So for those that haven't listened to Chelsea's episode way back when this podcast first started, we are gonna rehash it just a little bit because I feel like not only has your story shifted and changed a lot, but it's also evolved in the way that we recognize our story as pieces of our story coming full circle. I feel like the more we've learned, the more we realize that we didn't know a whole lot going through this process. And even two or three years ago, we didn't really know that much. Like we knew very little compared to what we know now. Like a lot more.

Years Of Symptoms And Gaslighting

Excision Surgery Hysterectomy And Recovery

SPEAKER_02 6:13

So that's absolutely true. So yeah, I um have a very typical endometriosis story. So it started with me as a teenager. I was symptomatic, I had really painful periods, I had cramps, I had leg pain, and I spent years and years and years in and out of doctors' offices, which is a very familiar component of most people's endometriosis stories. Um at one point, I think at the by the end of my journey, I think I had seen over 30 doctors for my different symptoms that I was experiencing. And I would go through this cycle where I'd go to the OBGYN and talk to the OBGYN about things, and they would say, Oh, this is just normal, but your GI symptoms are weird. So they'd send me to GI and I'd go to GI and they'd be like, oh no. They would think it was just IBS. And I would get sent back to my PCP, and then we'd look at my urinary symptoms and then go to urology, and they would say I had painful bladder syndrome, and it just was this like constant cycle of these, like, I want to say like pseudo-diagnoses, not to say that they aren't, but it's just when there's it just didn't feel like they were being investigated. It was just kind of one of those, like, oh, you have these symptoms, IBS. You have these symptoms, it's got to be painful bladder or interstitial sicitis, is also what it was referred to. Um, and it was like, so what do I do about these? And they really didn't give me any good options for anything. And it was technically my seventh OBGYN that was like, hey, I think you have endometriosis. Like all of this makes perfect sense, but she was not surgically skilled enough to handle the level of disease that I had. And so I ended up seeking care through a specialist that I found through Nancy's Nook on Facebook, and went and had my endosurgery in October of 2020. And it was awesome. As crazy as that sounds. I have never ever, like truly in my life, like I think about the really important moments that were in my life. And it was like, you know, meeting my husband, having my kids, and the day I got my endometriosis diagnosis because it was such a like powerful moment in my life after over 20 years of being gaslit and being told that it was in my head, being told that I needed a psychiatrist, that I was anxious or depressed, and that's why I felt like I was dying every single month. And so it was just such a profound moment in my life. I remember sending my mom a text and I was like, I am not crazy, they found endometriosis like everywhere. And so um I had excision surgery, and at the time I also uh was done having children and we suspected adenomiosis, and I also had fibroids, and so I had a hysterectomy at the time. Um, I lost one ovary during that surgery due to a large endometrioma. We managed to save my other one, which was great news. And at the time I was like so stoked to save my ovary because I was like, I won't go into menopause with that. Still happened. So yeah, um, which we'll talk about. But I that was one of those things I learned years down the road that that can happen. So I felt pretty good post-surgery. I had some complications and around the 14-week mark that I ended up being hospitalized again and I ended up with an infection, and it just kind of it was a rough recovery for me. I also do have EDS, and so that definitely contributed to my compromised healing, and it just took a lot longer for me to kind of get back to normal after my surgery than what it would take a typical patient, I think. So went through all that, um, made it through my complications. I, you know, it took about another six months after that, like I would say mid-summer of 2021, where I started being like, okay, like this is kind of my new normal baseline. Like I feel like I've healed from the surgeries. I ended up having a second emergency surgery to fix a few things. Um, no fault of the doctor or anything like that, just my bad connective tissue. And I was still kind of having some issues. And it like to the point where I, when I went in, I went in for something, and I was like, can you see if they actually took out my uterus? Because like I still feel like I have a uterus. Like I still feel like I'm having these like menstrual cramp type feelings, like that kind of lower pelvic like heaviness and just kind of achy and it was uncomfortable. And it was nothing, nothing compared to what I dealt with with the endometriosis. Like that was absolutely like debilitating. Could not get out of bed, could not go to work, could not function. And this was tolerable, but it was still uncomfortable. And it was, I was kind of upset, you know, thinking like, oh, my surgeon probably missed something. And, you know, starting to second guess if I had a quality surgery, and I just went down this rabbit hole of like the spiral of sadness, because I thought for sure, like I was destined to be that person that had to have like surgery after surgery, and I was just never gonna be completely well. Um, and I started really like paying attention to my symptoms and tracking things, and I was really this is one of those things like I'm I was lucky in a sense, because my mom was diagnosed with a condition called May Thurner syndrome when I was a teenager. And with May Thurner syndrome, it is an iliac vein compression. So your iliac vein and arteries run down kind of in your pelvis. Your artery comes off of the aorta and splits into two, and then the iliac vein comes off the vena cava and splits into two. And what happens is the artery sits over that vein and compresses that vein, usually the left iliac vein. And my mom had that. And so she had had multiple blood clots from it and had really struggled with a lot of complications and just serious pain and had gone through a lot with this. And so it was something I was kind of familiar with, and I started really thinking about it and paying attention to how my legs felt. And I realized that while the endometriosis surgery fixed a lot of my musculoskeletal issues that I had, my back pain had improved with my endosurger. I mean, it still didn't feel great, but I definitely it was so hard because I was really truly living my life like on a daily pain scale of like a seven to an eight. I mean, honestly, every single day I like I was having a hard time walking, I was having a hard time moving around, getting in and out of bed. I couldn't work because I was so ill. Um, so any improvement from that, you know, was really nice. And it was like easy to just be like, okay, well, like this is better, but it still didn't feel great. And I've started paying attention to a lot more of those symptoms and just really kind of tracking how I was feeling and tracking what was going on in my body. And um, I started to realize that I was still having some issues with my legs, and they just felt really heavy. And it my pelvis felt really heavy, and it's just it felt like, you know, it's often described as like a hot bowling ball is like sitting in your pelvis.

SPEAKER_01 13:05

Yeah.

SPEAKER_02 13:05

And I kind of felt that way. And I was thinking about it, and that's how my mom described a lot of her pain that she had with her May Turner syndrome. And so I talked to her a little bit about it, and you know, I was like, I'm really thinking that this is something that I should consider looking into. And so I went to my PCP and like in true, like endo-gaslit like trauma fashion, had a telehealth appointment with her. And I literally had sticky notes all the way around my screen because I was like, I need to get this referral, and I don't think she's gonna give it to me. Like I'm so used to just being told no, like you're not gonna do this, you're not gonna get this. This isn't you, this is in your head. You had surgery, you should be fine. You had a hysterectomy, you should be fine. And so, you know, I went in like overly prepared, like all these sticky notes, like all my symptoms, everything that I was dealing with, and trying to get this referral. And thankfully, she was really receptive to it, which was um very, very nice surprise considering what I had been through before. So she gave me the referral. I went to a doctor down in Denver and uh was scheduled for what's called a venogram, where they basically go in and they make like a little for mine, they can go in different places, but for this one, they went in and made a little incision in my neck and they follow your veins down and they just do different like testing through those veins. They do like ultrasounds, like endovascular, so inside the vein, ultrasound, and they kind of can see like how things are flowing, if there's compressions in there, what your blood velocities are, so how quickly your blood is flowing, if it's flowing in the right direction. So I had that done, and they were like, Oh yeah, you have my therner syndrome, you also have something called nutcracker syndrome, which is a condition where your renal vein, usually the left side, is trapped and kind of squeezed by between your aorta and your superior mesenteric artery, which is that branch that comes off of the aorta and kind of runs down into your abdomen. And so it was just kind of squeezed like a nutcracker, which is why they call it that. But it's a left renal vein entrapment, is the anatomical way, I guess, to describe it. And so I had that, and that made a lot of sense because I was had I felt like I had a kidney infection, like all the time. Like I would get this back pain, you know, that flank, uncomfortable, like burning sensation in my back, especially if I'd been on my feet for a long time. So if I was active at all with it, you know, cleaning my house within about an hour of like doing stuff, cleaning, being on my feet, walking, I would get this like searing back pain, like someone was like stabbing me with like a hot poker. And so things started kind of coming together. And I was like, okay, some of this actually is making sense. I was having some bladder stuff, not terrible, nothing compared to, you know, to what I dealt with with the endo, but was still having some weird like bladder sensitivity issues. And so I ended up pursuing treatment through this facility in Denver, and I had a stent placed in my iliac, left iliac uh vein. So, and after that, I felt pretty good for a while. I was doing really well. It really did change the quality of my life. I was able to go back to school, I was really doing the things that I wanted to do. We went to Disneyland like shortly after that, which I had like dreaded going or Disney World. I went to Disney World with the kids, and it was like I was dreading going because I was like, there is no way that I'm gonna be able to walk. Like, I'm gonna be in the hotel the whole time while everybody else is out having fun. And I made it the whole trip four solid days walking through Disney, like 15, 20,000 steps a day, and I felt great. Probably other than being overstimulated.

SPEAKER_01 16:36

Yeah, like it was a lot.

SPEAKER_02 16:38

Um, thankfully, my kids are older, and so when I did get overstimulated, I'm like, you guys go do what you want to do, and I'm gonna go sit and have a margarita at this lovely.

SPEAKER_03 16:50

Yeah, yeah, yeah, exactly.

Considering May Thurner After Surgery

SPEAKER_02 16:51

And I let them stay at the park late with my oldest daughter, and so yeah, it was they had a great time, and I went to bed a little bit early a couple nights, and yeah, but I I made it, you know, I made the entire trip. I really didn't feel terrible. Standing in line was a little tough on me. I still find that standing in one place, like being stagnant like that, is hard. I can walk a million steps, but don't make me stand for more than about five minutes in one spot. So yeah, it helped a ton. It made a really big difference in how I felt. And then I just started kind of feeling bad again. And some of those symptoms started creeping back in. My left leg was really heavy again. I was really lucky because I never had any blood clots from this. Blood clots tend to be very common, and a lot of times how people discover that they have venous compressions like this, like May Terner. So I was very lucky because I did not have any issues like that, but I could just feel it kind of creeping back in. So I actually made another appointment with a different doctor, an interventional radiologist out of Denver. Her name is Dr. Brooke Spencer, and went and saw her. And she was highly suspicious that my stent was not in the right place. So we ordered some testing. I did like a pelvic MRI, we did um a pelvic MRV, which is another type of venogram, and my stent wasn't in the right place. So we don't think it necessarily migrated because it was actually sitting lower, and typically if a stent migrates, I think it usually moves in the direction of the blood flow, which it would maybe move upwards instead. But I think it was just my stretchy, bad connective tissue that like then the weight of it all just kind of pulled it to where it was no longer where that like bifurcation is in those veins. And so April of 2024, I went back in for another procedure and I had a second stent placed and life-changing, so much better. Everything's been great. It's been almost two years now. Um, I still go in regularly for ultrasounds. I actually had one just a couple weeks ago down there, and everything looks really good. It's in the right place, it's doing its job. So I have, you know, probably I'd say about eight inches of metal running inside of me between my belly button and my groin on my left side, but I don't notice it, can't feel it. Um, and it has really given my quality of life back. I am in nursing school, and I can't even imagine trying to go through what I am doing right now. There is zero chance I could make it through some of these clinical shifts that we're doing if I had not had these treatments and uh found the help that I did for what I'm doing, what I needed done.

SPEAKER_03 19:27

Well, and it's interesting because like I remember when you when we first met. You had already had your stint, I think, at this point when we first met.

SPEAKER_02 19:38

Probably, yeah. Yeah. I think I had just gotten it done. Yeah, it was it was right around when we started our nonprofit.

SPEAKER_03 19:45

Yeah.

SPEAKER_02 19:46

Um, before we decided to make it a nonprofit.

SPEAKER_03 19:48

Right. So I'm pretty sure a dealership conference room. Yeah. Which was amazing. Um but I do think like during that time, I remember you really struggling with food a lot more. Like it was it was always like I can't, you were losing weight like crazy because you couldn't keep food down. You felt awful pretty much all the time. And then as we, you know, as a couple years went on before your second stint was placed, when we were in Florida, and I'm gonna insert the picture because I actually have a picture of this. When we were at the summit, you were standing in the back of the room with one leg up elevated, and the other leg like just standing there. And I actually have a picture of it. And it's because it was like looking back, it looks really awkward, but I knew exactly what you were doing.

Venogram Findings And First Stent

SPEAKER_02 20:37

Yeah, it was funny too, because I remember Sally came up to me and she like looked at me and she looks at my leg and she looks at me and she goes, Do you have May Thurner syndrome? And I was like, I do, yes, because I would always have my leg up somewhere because if I didn't, all that blood just sitting and pooling in my leg, it just it would hurt. Yeah, it was uncomfortable. And so yeah, I was like notorious for having my feet up on the back of somebody's chair, or like I think in the picture you're talking about, it's like literally sitting on a countertop. Yes, yeah, you know, and I know which one you're talking about. Yeah, and I always had it up, or I would lay on the floor and put my feet up on chairs and like I didn't care where I was, like I because it was just like I have to do this or else I feel like my legs can explode. And so yeah, it was really uncomfortable. And um, and I did have a lot, I had a lot of food issues, and it kind of goes with another compression issue. So when I had my complications, like between my endometriosis surgery and my complications from that, with my endo, I had really bad nausea. And so I was already kind of having a hard time like eating and keeping weight on. And then with the surgery, I I really just couldn't take very good care of myself afterwards. I was still struggling getting enough protein in and just getting enough calories in general. And then after all the complications and the hospitalization, like I just did not feel well and I lost so much weight. And so I ended up developing another type of compression, and I was very lucky because it was a transient. Kind of thing for me. I was able to fix it by gaining weight. But I had something called superior mesenteric artery syndrome, where again, it kind of runs through that same path that the renal vein, your kidney vein runs through, but you have a portion of your small intestine that also runs between your aorta and your superior mesenteric artery, and it would pinch that off and it made eating like very painful. Yeah. I would just get so nauseous. Anything solid food-wise, like I I could take like one or two bites before I actually felt like I was going to throw up because it made me just so ill to eat anything. So I had consulted with a surgeon out of Denver and uh worked with him a little bit. And I just really was not interested in having another procedure and another surgery and have them go in and try to fix that surgically. Sometimes it works really well for people, but I really wanted to take a more conservative approach. And so he had me on a liquid diet for I was on it for seven months, where I literally drank every single meal pretty much for seven months straight. And in Disneyland, actually, I drank most of my meals. I brought my little like mini blender. And so I bought those insure or boost drinks and I mixed them together, you know, with some ice and throw a little half and half in there. And I I I mean, when at my worst, I was down to 92 pounds, which I'm five foot five. So I was like me now, I was about 50 pounds less than what I weigh now. Yeah. And so it was a significant amount of weight that I had lost. Um, you could see all of my ribs and my chest, like where they attached to my sternum. And I just, I mean, I looked ill. And so that one was thankfully something that I was able to resolve on my own for the most part. And once I gained the weight back, there's a little fat pad that sits kind of in that area. And there are some patients who are lucky and they can gain weight. And when that fat pad increases, it buffers that space enough to give it room so things don't get so smashed down. And I was one of those patients. So I just have to be really cautious, make sure my weight stays within a certain range. If it doesn't, I start getting symptomatic again. But yeah, it was it was a struggle there. You have traveled with me a few times where I was just like, I can't eat this. Like I can't eat anything today. Like I'm gonna drink my calories and hope that I can function well enough to get through this because venous compression stuff can really wreak havoc on your life, you know, and it's it's really hard to kind of figure out because it's so vague. Yeah, there's so and there's so much overlap in the symptoms. I mean, truly, like my endometriosis symptoms and my pelvic vein disease issues and my May Thurner stuff and nutcracker stuff, like they've really felt very similar. Um very, very, very similar, like to the point again where you know, I was like, are you sure that my uterus is gone? Because I feel like it's still there. So, and it's just a lot of that, you know, those veins get full of blood, they put pressure on the pelvic nerves, they put pressure on the other structures in there, they get inflamed, everything kind of gets irritated. And it it really can kind of mimic a lot of those things. So I was happy with the route that I took where I started with the endometriosis excision. Though it is invasive, like it's not something like with a stent, because stents are typically seen as permanent. So there are times where they will try to go in and remove them, um, but they're not. It's a really dangerous surgery because your iliac vein is a giant vein, right? And a very important vein. And it's very hard for them to go in and take that out once it's actually like set in that vein. And so I'm glad that I did the less invasive, like less permanent, I guess, solution first, pursued all that, got that done, and then went on with the stenting because you know I'll have metal in my body for the rest of my life. But my mom's had hers for almost 30 years now, and she's doing great. So she's got a few stacked up in her too, and she just has we we have matching interior hardware.

SPEAKER_01 26:08

So and you don't set up the metal detectors in the airport, so you're good. Right.

SPEAKER_02 26:13

You know what's funny though is when I was super, super lean, like when I had lost all that weight, it did set it off one time, and like they sat there and like like I was stuck in security for a few minutes because it just kept because I was, I mean, I was skin and bones, so and it was sitting like and it ran. That's the only time it ever happened, but now there's enough there to cover it up. So you but yeah, it was weird, and it's not supposed to set them off, they tell you it's not, but they sat there and scanned over my like lower, you know, left quadrant, like over and over. And I was like, I prop, like there is nothing here.

SPEAKER_01 26:46

I promise you, I've been leggings, of course, because of it.

SPEAKER_02 26:49

Yeah, that's what all you wear. Yeah, yeah, like I'm not hiding anything.

SPEAKER_03 26:52

Well, and it's like you know this, like you have metal in your body, but they don't know that, like going through it, you know.

SPEAKER_01 26:59

Right, yeah.

SPEAKER_03 26:59

But it was in it. I think the thing what's interesting about this is I had never heard of this until I met you. And when you started bringing up all the symptoms that were so similar to endometriosis, I think a lot of people have like these reoccurring surgeries, thinking like my endometriosis is still back, or it's come back, or they didn't take care of it all, or whatever the case is. And so you're just chasing surgery after surgery after surgery. And the problem with that is is that the more that you do that, the more scarred tissue you have. And then it does, I mean, could they always find endometriosis? Probably. Like there, you know, maybe, I don't know. And then some people, you know, they get the the pathology back and it's negative. And so it there's that crushing feeling of like what is going on with me. And we're realizing that there is a lot of like linking between those with endometriosis and those with vascular issues, and I don't know why that is. I don't think they really know why. I think they're starting to look into why and investigate it more, but it just feels like for those that are maybe going through figuring out symptoms, like this may be an avenue that you want to consider. And this is not a surgery or an avenue that you want just anyone for. You need a specialist who really gets this and understands it to follow that journey, right?

Symptoms Return And Second Stent

SPEAKER_02 28:22

Yeah. And you know, I I feel like it's one of those things it's really easy once you have an endometriosis diagnosis to just assume everything's endo. You know, it's endo, it's endo, it's it's always endo, right because you know, there is no cure. We manage it surgically as well as we can and hope that we, you know, can trust in our surgeons that they did a good job and they cleared out what they saw. And, you know, but there is always that chance of recurrence. And so I think you get trapped in that like cyclical mind, you know, like thought pattern where it's like it's endo, it's always gonna be endo. I'm always gonna have this. And I think we fail to consider that there are a lot of pelvic pain generators that could be a possibility, you know, between the vascular stuff, endometriosis, pelvic floor dysfunction, there's just a lot going on there. You can end up with nerve entrapments, you can end up with um like central sensitization issues. There's so much crammed in this tiny little space. Like, and I think it's when you see it on like an anatomical model or like in a textbook and you see how you know all the organs look and stuff, it's nice and they're all spaced out, and you know, you can see everything in there is smashed. Like there, it is like smooshed together, like they're all laying on top of each other. And so there's a lot that can go wrong. And you know, it's not just the ovaries and the uterus that are there. You have your, you know, intestines, you have your sigmoid colon, you have your rectum, you have all of these pelvic nerves. It's just there's so much at play. And I think it's really important that we just take a step back, especially post-surgery. If you have surgery with somebody who is considered a specialist, and you am hoping did your homework before you had surgery, you know that they're doing a lot of these surgeries, you know that they are competent in what they're doing. They're not a standard OBGYN that's doing three or four endosurgeries a year. If you feel confident in your surgeon's abilities and you know that they've had good outcomes typically overall, I think it is worth investigating other pelvic pain generators. And it's really interesting because, you know, with our small nonprofit group, what are there now? Seven or eight of us that have made Thurner diagnosis. That we know of like those are just people where like we've talked about things, we've talked about the symptoms. Some of them attended the endometriosis summit where Brooke Spencer did a talk about these things and pursued care after that. And um, I I need like a referral card for MIPS at this point. Yeah, like I've sent you 10 patients. Can I get a free ultrasound? Like that. So many patients. Right. Yeah. So, but so many of them ended up having this. And um, a lot of them pursued treatment and were scented, some of them are waiting. Um, so you you can take a more conservative approach and just watch it and wait it and see what happens. But for me, it really made all the difference in the world. It's allowed me to have my life back, it's allowed me to pursue the things that I want to pursue and do it without being miserable. I could have probably suffered through school. I could have suffered through this all of this, but like I I'm enjoying it because I am not dreading going and sit, you know, standing in the hospital for 10 to 12 hours a day. I can do that and I look forward to my shifts there, and I look forward to walking around and interacting with people and doing stuff, and I'm not like dragging my leg behind me and like which did happen so many times. And like patching lidocaine patches, you know, where I have like eight different lidocaine patches and a heat belt on and like all these other things. Like I can go to work or you know, go to school with like uh my like bag that has like a normal size like travel thing of Advil. Right. That's it. That's all I really need to bring with me, instead of like an entire medical supply kit where it's like I don't know what's gonna happen, I don't know how I'm gonna feel today, I don't know if I'm gonna need this or this or this. So yeah. It's been an adventure, but and it took a few years. And that's the other thing is you really have to be patient. Sometimes it takes time to kind of figure out what's working and what's not working. It takes time to find the right doctors, it takes time to find the right treatments for you. And, you know, start to finish my endo, you know, surgery. Really like I started pursuing surgery June of 2020. And here we are, you know, but yeah, it's it takes time, you know. It took me a few years to really get to a place. And even there, you know, I recently on Christmas Eve this year, I went and had what's called a greater sophonous vein ablation, where you have these like surface, kind of surface level large veins in your legs. And I still had a little bit, like my legs, they didn't really hurt or anything, they just get kind of tired. And it wasn't anything debilitating, but I had a pretty significant amount of reflux in my legs, probably from years of them just being like blood pooling in them and them not being able to function properly to get that out, and maybe some like damage to some of those valves in the leg that just were making it to where they just weren't performing the way that they should. So I went and had that done um over Christmas break down in Denver and on Christmas Eve. So it was nice. Merry Christmas. Yes, no, it was great. I got a I got a nice little Valium nap and got done and came home and sounds delightful to me. Christmas because I was recovering, so it was kind of nice. So yeah. Sounds great to me, and that helped a lot too. You know, it took me a few weeks to kind of really get back into things, and they encourage you to walk as much as possible. And I've been able to get in at least 10,000 steps a day most days, just trying to get everything moving, and uh, and I feel great.

SPEAKER_03 34:03

So you've come the wrong way. And I also there was a huge difference between when before when before your stent and your energy level. Like it was so different. There were moments where you were like, I can't get out of bed today. Right. Yeah.

SPEAKER_02 34:20

And now I mean I I went from being like I mean, uh truly like very like I was I was at home most of the time. Like I really I didn't like to leave. I would leave to take my kids to school. I wouldn't go grocery shopping. My husband was managing most of the things in our lives that required leaving the house because it was I was so tired that I really like struggled with functioning. I mean, even socially, like it would be really hard. I'd have friends go in to do stuff, I'd make plans to go to do stuff, and it was just like I feel like I'm mono. I am so tired. I feel like I there's zero chance that I can leave the house right now. Like I like it would be dangerous to be driving. I'm so tired. And having blood flow to your brain. Who knew? Who knew that was gonna be the better?

SPEAKER_03 35:04

Right? Well, and like not only that, but like just the overall feeling that you had after your stint was placed, you were completely different. Your brain fog was better. Yeah, you were able to just like function on a whole new level, but it still mimics endosymptoms. Right. So because so many of us have chronic fatigue, we have chronic brain fog. And so I think that that's what's so hard about differentiating between something like May Turner or some vascular issue and endometriosis. And I really think, and I I I don't know if I know anyone that has Mayturner that doesn't also have EDS, which I I do think there's a huge correlation there, and I don't know what that is, and I can I can't speak to that on a scientific level, but it just seems very prevalent for those who have EDS to also have May thurner, nutcracker, any kind of vascular issue, because if you think of it, those are connected tissues.

Nutcracker And SMA Syndrome Explained

SPEAKER_02 36:07

Yep, they are. And I think too, it's important to note that you can have May thurner anatomy where like that vein is compressed and you may not have symptoms from it. It's actually, I want to say it's somewhere like 26-28% of people have the anatomy for it, um, but they're not all symptomatic. So, you know, and it's it's hard to find a lot of times. I mean, it was never seen on CT or any of the other things. It wasn't until I had MRIs done where and Venograms where they were like, and my compression was 81% compressed. So I only had 19% of the blood flow that should have been going through that vein uh going through it. And you know, that's a pretty significant compression. Um, sometimes you'll see smaller numbers there, and and with that you may be able to treat or treat it a little bit more conservatively and you know, wear compression stocks and do other things and avoid surgery. But yeah, 80% compression. That's a lot. That was a lot. That was a lot, and I do think there is a link probably between these vascular conditions and the connective tissue disorder stuff.

SPEAKER_03 37:10

And again, that connective tissue disorder stuff and endometriosis tend to party together as well, along with POTS and you know, MCAST and all these other things. So it's like this is a massive rager of a party of chronic illness. Right?

SPEAKER_02 37:25

Yeah, and chronic diseases all seem to go hand in hand. Yeah, it's interesting you bring up the POTS stuff because growing up I always had really, really bad orthostatic hypotension where like when I'd stand up, my blood pressure would just tank. Like I mean, in the ground, just awful to the point where like every single time, I mean, I remember it from like being very young, standing up and the whole world goes black. And like I just got to the point where I learned to like walk my first, you know, five to ten steps, like not being able to see anything, just like feeling my way around. And um, a few times where I fainted, I have a scar. I call it my Harry Potter scar in my forehead because I fainted and hit the banister once because I stood up too fast. And um, I've had that for most like my truly my entire life, like 30 years that I remember feeling that way and getting my stent placed. It's maybe happened five or six times since then. And there is a link, it seems, and I'm not sure that they know. There's a talk on YouTube where Dr. Spencer goes into more information about this and more on like a medical side of things, but she does talk about a link between POTS and um the these compression syndromes that people have, especially Mae Turner syndrome. And she, I think she's doing some studies on it right now to see kind of if we can kind of tease out what that correlation is or how those are connected. Because I, I mean, I it was like it was kind of a weird thing because I just wasn't expecting it. And then I said, wait, I can stand up without fainting or almost fainting, like five, I can just like leap out of my chair.

SPEAKER_03 39:01

It's amazing what you notice when you yeah, like I I noticed this with even with my indo stuff. So, like the other day I was talking to Elliot about it. So I haven't had we were talking about bloody noses, and I was like, I haven't had a bloody nose since my surgery.

SPEAKER_00 39:16

Yeah.

SPEAKER_03 39:17

And I didn't realize, he goes, Yeah, your bloody noses were cyclical. Yeah. And we just had to stop and think about it. We didn't put two and two together until just recently when we were talking about it. And I was like, oh my gosh, like this is why it's so important to continue learning, even after you've had surgery. Yeah. Because I feel like there's so many things we learn about ourselves when we continue to understand the things that have affected and really like invited themselves into our bodies in a way that is a lifelong thing. We always have to be aware of these things, whether we're really impacted by them at that time or not. Being aware of them and some of the symptoms that go along with it, I think changes the outcome of our care for everything.

SPEAKER_02 40:00

Yeah, it does. And I think too, we get so used to just not feeling great that like it's our baseline. So then when like there were things, you know, like the you know, the dizziness, the fainting, that type of stuff. Like I didn't even realize how big of a problem it was because it was just like part of my life, you know. And then once it stopped that stopped happening, it was like, whoa, like this is really weird, you know, or you know, with my like leg vein ablation that I had, you know, they bothered me a little bit, but it wasn't, I mean, you know, I'm so used to just like severe chronic pain. And I spent so many of my years dealing with that severe pain. It's like even these like little small changes that I had, like there, it was actually pretty significant how much better I felt. Um, you know, and it was, I don't even think I realized how much some of these things were affecting me until they were gone. And I was like, wow, like I actually feel way better. I actually feel like maybe I'm getting pretty close to what a normal human feels like. Like even sitting in a chair like this, you couldn't have fat. No, like Alana's been on a plane with me more than once. And it's like I am like a three-year-old in my chair, like I cannot sit because I would just get this like burning pain deep in my um hips and kind of my my buttocks joints there and all that, and it just hurts so bad to sit. And I sit all day now. I don't like to because I like to do it well. I don't sit well. The ADHD doesn't allow it, but yeah, um, yeah, I like I can sit on an airplane without like driving everybody around me crazy because I'm squirming in my seat like a three-year-old.

SPEAKER_03 41:39

Well, and it would like put you out for a while. Yeah. So like you would go on an airplane, we would get somewhere, and then you would be kind of done pretty much after that. Like it was like traveling took so much out of you just to get to where you needed to go, yeah, that you had to plan accordingly so that you could have time to rest, that you can get your legs up, you could whatever. And so now I feel like you're able to. I mean, we have where we get off the plane and we just go. Right. And writing the luggage cart. Riding the luggage cart. Oh my we had had they been in that hotel hall when we were riding the luggage cart, I'm pretty sure we would have been kicked out.

SPEAKER_01 42:18

Yeah. Oh yeah, no. It's a miracle that they there was no tequila involved in that.

SPEAKER_03 42:22

That was just pure insanity on our part.

SPEAKER_02 42:24

Yeah, we hadn't even really started being wild at that point. And it just yeah, yeah. I I mean, I would have to buffer in a day from like traveling where it's like I I get to where I am and the rest of that day is done. Yep. Plan anything, like room service, you know, maybe like order DoorDash to the hotel, and then the next day I could do stuff. And then coming home, the same thing. Like I would always block out the day after a trip because I needed an entire day to just like rest and like let my body heal and let everything get back to where it's supposed to be. And I, you know, sitting and being tense and having that pain and like my muscles hurt, and I'd have to book massages and which are counterproductive when you have EDS. Like, I finally stopped doing that and I do feel like it's helped a little bit. Um, but yeah, like you know, I go to pelvic floor PT. I traveled with my pelvic floor PT more than once.

SPEAKER_01 43:16

So sometimes we just bring her along. Bring her along because we need help. Yeah. And she's super fun. Oh my gosh, she's the greatest human ever. She is she's part of the debauchery too. So loudest out of all of us, believe it or not.

SPEAKER_02 43:28

Yes, she is, but she's so fun. So fun. Yeah, I highly recommend traveling with your pelvic floor therapist. Yeah. If you can do that, especially if they're really fun.

SPEAKER_03 43:38

I think that's what like and we talk, we say this every single, every single episode, and I am a broken rep record, but like community matters because had you not said something and had you not it gone down this path, so many people that we know would not have had that diagnosis because they were able to convey their symptoms and you. were able to you know help them consider that this could be a possibility and that's something that like you can't you can't just like go online and look half the time because there's so many symptoms that are the same. Right.

Endo Versus Vascular Pain Clues

SPEAKER_02 44:14

Yeah yeah and it's really hard. Now one thing if you are trying to kind of differentiate pain from vascular stuff to endo pain and it's not like it's not a 100% thing but a lot of times if you have pain and you decide you go rest and you get off your feet and especially if you can get your legs up a little bit prop your legs up and get some of that blood. And if you feel better that's actually a pretty good sign that what you're dealing with is probably vascular. Right. And so you know you can use that as you wish I'm not saying it's a diagnostic tool or anything along those lines but it might help for those that are seeking treatment where it's like hey I feel really bad. I had endosurgery I notice that I feel better once I lay down and I'm off my feet or I notice I feel better when I wear my compression socks or and I highly recommend like vascular issues or not wear compression socks. They are just they help so much whether you have the issues or you don't they really do make a big difference in just how your legs feel so I have like the really sexy ones that come like all the way up and I put them on with garden gloves my husband is I was like you are so lucky to be married to his trophy wife. Right putting her giant grandma socks on but they help you know and and I don't feel like I have to wear them like on long days or anything but if I know I'm gonna have like a day where I'm gonna be standing all day and on my feet for 12, 16 hours. Or in an airplane or yeah like and they're they're especially on an airplane because they're gonna help you not end up with blood clots hopefully and those can happen to anybody on an airplane. Yeah you don't have to have weird crunchy weird veins to have that happen. So yeah highly recommend good compression socks. You can find them on Amazon you can get them Bombas makes good ones that I really like.

SPEAKER_03 46:02

I like theirs you can get compression leggings too. Yeah yeah high compression I know there's some out there and they're like I don't know they're a couple hundred dollars but they're like really tight the formy ones. Yeah I have not tried them I can't stand by them and I can't tell you whether to get them or not but they are out there if you need something really high compression.

SPEAKER_02 46:21

Yeah yeah and they make different gradients you know for it like you can get like lower compression ones and you know on days where I'm not doing a lot I'll wear my lower ones but on days where like I'm traveling or something I put on the the big boys cleaning the house.

SPEAKER_03 46:36

They're attractive but you know what I feel better and I'm a nicer person when I wear them so and and you can do what you need to do longer. Like it gives you the energy to do it because you don't have the pooling and you don't have you know like it preserves some of that energy.

SPEAKER_02 46:51

Yeah it does. And yeah like you said you know it's not a huge issue for me which is great. Like I don't have to wear them but it definitely it definitely makes things just a little bit happier.

SPEAKER_03 47:00

So well that that's true with like even EDS. Yeah like I think maybe that's why we do do so well with compression is because we have these bendy bodies that just do not like to hold themselves up.

SPEAKER_02 47:12

So that helps yeah with like the fatigue and stuff to be squeezed into place. Yeah me too everything where it's supposed to be squeezed because yeah it's too easy for things to not be where they're supposed to be.

SPEAKER_03 47:24

And I don't know if I have Maythorn I haven't looked into the vascular stuff as much um my I don't follow a lot of that guideline but you don't have to like to still be impacted by it. I think that's something like I will probably venture down that path I'm one thing at a time right like we all do this one thing at a time and that's one thing I want to encourage people to do is like even if you're considering any sort of vascular issue, do one thing at a time. Don't try to tackle everything at once because the minute you do that it gets so overwhelming and it gets a little muddy like you can't really differentiate between what's helping and what's not and I don't know I just that's something that I've learned in this process of like figuring out little things that are going little or big things that are going on with me is it's one step at a time. Yeah. Don't try to do everything at once if you're in this process.

SPEAKER_02 48:14

Yeah I I agree with you. That's I think I think it's a really good idea for people that go through these and you know take it that one step at a time really investigate one thing thoroughly get treated for it. Give your body time to heal. Yeah you know we get in this like oh you had excision you'll be back to normal in two weeks you can go back to work you can do it's like no like do not do that. Do what you feel comfortable doing but it is you know a year long process for your body to heal from especially these like extensive excisions where they're removing the peritoneum and they're taking out ligaments and I mean it's it's a lot on your body and it takes a long time for your body to truly heal from that. So I think it is good to take things slow, take them one at a time, address them you know individually and then see what happens. And if that doesn't work move on to the next thing after some time. And find yourself a support system. And find yourself a support system.

SPEAKER_01 49:12

Yeah I'm so lucky that I like our pelvic floor therapist brought us all together and yeah it is like I can't even tell you how lucky we all are to have each other. Like Alana is just one of my favorite humans.

SPEAKER_02 49:26

We like we've talked about and I'm sure you guys are tired of hearing about it but we're tired. So much fun like my face hurts after hanging out with her. I don't know that I'm gonna make it to the summit this year. And I'm just like pretty grieving over trying to figure out if I can fly out like at like nine o'clock on a Friday and fly back at like seven o'clock on Sunday night because I'm like I can't imagine not going and not having those days of just like hilarious crazy it's so much fun. We have the best time.

SPEAKER_03 49:59

Yeah our Snapchats are yeah private for a reason. Yeah it's it is like it's so and here's the thing is like I think because we get each other we get where we're coming from we can joke around about these illnesses in a way that is like so relatable. Right. And then I think the other part of this too is like for us we're very similar. So that's probably part of it. But like the whole group everyone on the board we just get along like it's not a normal nonprofit where you know you might like some people but maybe you don't like the other like that treasurer doesn't let you spend any money. No it's not like that at all. It's like such a tight knit group right that when you allow yourself the space to do this and like be involved with people your life is so much richer. Right.

Compression Socks And Practical Management

SPEAKER_02 50:55

Yeah it really it really is I mean it's it's amazing and it's so good because you know on the good days we support each other on the bad days we support each other. It's there's times where you know in our Instagram messages it's just all like hilarious chronic illness there's a lot there's a lot of poop talk in our Instagram messages. A lot which is hilarious you probably wouldn't expect that from Alana and I but yeah like everything we just we laugh about everything. Because if we weren't laughing we'd be crying and we don't want to do that. We want to find joy in what we can and we want to find that sense of connection with each other and um sometimes a poop joke is what brings us together. Yep we are part of the Angry Pelvis club. We are part of the Angry Pelvis club so but mine is so much less angry. Yeah like I feel like I might have to turn in my membership card at some point because it's just it's it's a lot more scrouchy than grandfathered in yeah yeah I I'm an original founder so you are you I'm pretty sure you're the one that came up with that so I am my husband was just mortified.

SPEAKER_03 51:59

No both our husbands for some reason don't like it which I think is really weird.

SPEAKER_01 52:03

Yeah Jackson my teenage son thinks it's hilarious but that's why he's one of my favorite kids in the whole world he's he's definitely the favorite of the other three that we have that he's funny.

SPEAKER_03 52:14

He's so funny and he's gonna be like the one child of yours he's the only boy mind you yeah he's gonna be the one that is like going to be the loudest advocate for any woman in his life.

SPEAKER_01 52:26

Absolutely yeah he is not afraid like he went to summer camp this summer and explained to his entire cabin what maxi pads were because none of them knew and that's my kid and he was like you guys should know this so yeah I was like good job and he's yeah he's 15 and just he's the best he's he is the best he's so awesome.

SPEAKER_02 52:46

All my kids are great. They are he's the one that's like very pro like endo like I which is funny because the other three are girls and you would think that they would be like no but no he's the one that's always like asking about people's uteruses and stuff.

SPEAKER_03 53:01

Always he'll scream uterus from like anywhere in the house.

Finding The Right Specialists And Team Care

SPEAKER_02 53:05

Yeah so yeah have fun talking about uteruses yeah all the time every time he leaves everything we know endometriosis is not a uterine disease we know that's that too but he just thinks the word uterus is funny so yeah we do talk about it a lot yeah so I mean he's the best he is the best yeah if you could tell people that are in this journey three word or three things of advice like what would it be in trying to process this so that gives them a good guidance as to like steps to take so just a lot like it is with endometriosis finding the right specialist is so key to this especially when you're talking about getting things like stunts or they can go in and they can place like coils or like foam blocks in some of these like collateral veins that grow to kind of work their way around that traffic jam that you have. Having those like a lot of that stuff is permanently placed. So I think it's really important that the doctor that you're seeing has a good reputation uh that they have a history of good outcomes that they can discuss those with you that they're involved and they're paying attention to what the new research is saying that they're doing continuing education. And so like with my first stent that was placed we think that it probably wasn't the right size and that's why it just was not doing what it was supposed to do. So making sure that you have a stent that's placed that's the right size and so it's really that expertise. Yeah. You know and a lot of these doctors it's kind of like the endometriosis world where they are like gaslit by their peers where it's like what are you doing? Why are you treating this this way? Why are you why are you thinking this way? And they're kind of the outliers that are treating these diseases and it's not like it's they're doing really good work for patients and patients are having really good outcomes a lot of times because of this. You know not everybody has a perfect outcome and I think that's always important to make sure that people know you can have complications you can have you know may not feel better you may feel worse but I feel like overall statistically it does seem to make a really big difference. So yeah that level of expertise is very important just like picking a good endometriosis surgeon. You don't want to go to just anybody. And there are some places you know throughout the US that treat this if you are want to see somebody here in Denver I do really love Dr. Spencer's office. But if you are looking for somebody like she might be able to point you in the direction of someone that's closer to your home like there's a lot of people that travel to Denver like pretty regularly she sees people from all over the world that come in and uh have these treatments with her office and the other docs in her office are great too. So I like them and I've done a few things with them over the years and they've been very very helpful and they're very knowledgeable. So that's one thing sorry um I do think you really have to keep fighting yeah it's you know it's a lot like endometriosis where you really do get gaslit again. You know I remember talking to my uh or my PCP about it and talking to her about my symptoms and stuff and I was like well I you know I kind of think the endo could be back and she's like well that's not possible because you had hysterectomy and I was just so irritated. I never went back I found a new doctor who I love who is so so knowledgeable and does a great job and really like trusts me but um and this kind of goes also with like finding good PCPs and finding good doctors that will help you find the right path for whatever your pelvic pain generators are that are interested in helping you explore getting better that aren't going to sit there and tell you that you just have to suffer. Because I really did think for a long time that this was just going to be my life and I was just going to have this like chronic dull you know gnawing pelvic pain for the rest of my life and I that doesn't have to be the case necessarily I do think that I had very good outcomes and I think that there's a chance that you other people may not have as good of an experience and maybe I got a little lucky but I don't usually get lucky when it comes to medical stuff. I'm usually the one that has the complications and gets hospitalized and has multiple surgeries to fix things and a lot of drama. So I I just think that advocating for yourself and finding the right team to help you navigate whatever it is whether it's hernias, it's pelvic disease um venous disease whether it's endometriosis, fibroids, whatever happens to be causing your issues, just find the right team to help walk you through it and find like the strength to really keep fighting because you're gonna get told no a lot. You're gonna get told that you're crazy you're gonna get told that that can't be that's not how this works it doesn't go that way veins don't work like that. Well mine did so and I feel great now and I'm able to pursue the life that I want and you know just that there's hope on the other side of this I spent a lot of years very depressed really I mean just like teetering on the edge of just losing my absolute mind because I was so ill and I had no support I had you know great family support and support through friends and stuff but when it came to the medical system I had nobody no one and I was really really hopeless and I there was a lot of times where it was just very very hard for me to get out of bed and just keep going every day and deal with what I was dealing with. And I really did feel like I was crazy and being on the other side of it and literally living my dream right now. Like if you would have told me five or six years ago that I would be in school like in a fast paced program full time that I would be enjoying it that I would love going to lecture and sitting there for four or five six hours. It's still weird to me. I know but it's so fun so weird it's so interesting. We talk about cool stuff. No but I just I you know and that I would be able to go and stand like last week I stood in I worked in the GI suite and I stood in there for like nine hours straight like in one spot. I mean I had to like shift a little bit and I got to walk down up and down the hall with patients a few times but it was so amazing that I'm able to live the life that I want to live and it's something that has been so out of reach for me my entire adult life. Like I've wanted to pursue nursing since I was young and it was just like I could never do that. Like I don't have the physical capabilities I don't have the stamina and I am not well enough to get through uh an intense program like that. Now I'm doing it. Now you're doing it. And I have great friends I have a great family I have a great husband and it's just things you know years ago I just really never thought I would be here and be in the place that I am in and I am here now and it it took a lot of fight and it took not losing hope to get there. And it took a group of girls behind me too that listen to me cry a lot.

SPEAKER_03 59:58

But I and you're listening to me cry that you're in nursing school because I lost my day friend your day friend sometimes Alana and I like to go to lunch and have a glass of champagne.

SPEAKER_02 1:00:12

Yeah. But no I don't I don't leave the house except to go to school and it it really bothers me. I'm just telling you right now yeah no I don't like it either I feel like I miss you too much. I don't like I don't see anybody anymore. Even my husband I come home and I like go sit in the office and I'm just there until like 11 o'clock at night and he just like walks by and like wait I'm like sorry I gotta get through this and I can't do it.

SPEAKER_03 1:00:37

Well you're watching TV so sorry yeah well I am thankful that we get to just at least spend time together today. Yeah which and I'm thankful that you did this because we this has been like a really long time coming where we've talked about it forever because there are so many times that we've had this conversation and we're like we wish that we could record this for someone who is struggling. And I cannot tell you how many people I have come across um who have messaged me or whatever and I'm like and they talk about me thirner they talk about some sort of vascular issue and I'm like here's the person to talk to because she understands it in a way that I don't understand it. But I think that we need to have some more recognition behind it because I really think that this needs to be in consideration with an endometriosis diagnosis. Like I don't think that they need to be looked at necessarily separately I think when we're talking about doctors looking at the whole picture we have to start talking about this as well as an endometriosis diagnosis. Like and there's ways of non-invasively finding out whether you have this or not you don't have to have a surgery to find if you have any vascular compression issues. Like you can tell on imaging that is something that you can do. Yep you know and I recognize not everyone has that accessible to them. Like it it's that is a privilege so I do understand that from that standpoint but I really think that this is going to be the the future conversation. Right.

SPEAKER_02 1:02:09

Well and I'm really happy because I know that you know we have a handful of endometriosis specialists here in Colorado and I know that they all refer as soon as a patient comes back post excision or sometimes they'll even send them to MIPS first to get evaluated and then make a plan from there on if they think that it's you know especially if they're like oh I'm not sure this is endo like maybe go get this looked at and then and I think they're consulting with her too and like hey I should we go this way should we go that way and I you know my I had a surgeon that I was working with um out of the Pacific Northwest who consulted with the interventional radiologist and went through stuff and they both looked at my scans and you know and it's like that type of collaboration is going to make a huge difference in patients' lives. And the more that we can talk about it the more that we can bring awareness not only to endometriosis but to all this other stuff that happens to go hand in hand with it the better impact that that's gonna have long term on our patients.

SPEAKER_03 1:03:10

Yeah. So well and I know like even Dr. Zach Spiritos refers to Dr. Spencer because there's so many so much of a correlation there with like GI issues and nausea and all this other stuff. So I think like we're gonna start seeing some of that collaboration happening even more because there's not a one size fits all doctor. Right. Yeah like they have to I mean multidisciplinary but is always a term we'll use but they can't work in silos if you're gonna have better outcome.

SPEAKER_02 1:03:43

Right. Yeah and when we talk about that multidisciplinary care you know you need a good endosurgeon you need a good pelvic fluoret you need somebody that can help you with the nutrition side and you might need a vascular specialist whether that's a vascular surgeon or an interventional radiologist right someone who knows these things because you know it's it's very I think it's you know very anecdotal but just how much we've seen of it in our small group I it's hard for me to imagine that we are the outliers that it's just a coincidence yeah that like half of our group has May Turner that we know of like that just does not seem statistically possible for that to be a coincidence. So some here somehow we're still here like talking about this right right so yep fight for the care that you need and and it and you know research it look into it understand what these things mean um because yeah there there are different ways to treat it there's different theories to how impression should be treated some believe it should be treated from the top down. I was really lucky because with my stent placed I pretty much fix my nutcracker syndrome. Like it's like I don't have any symptoms of it anymore. I don't my last um scan my renal vein is finally like happy and free and living its best life whereas before it was like scrunched and unhappy it made a big difference but some people you know have to treat it a different way and they they do it a little bit differently and they treat from top down and so find the right specialist that's gonna help you navigate what's best for your situation.

SPEAKER_03 1:05:20

Yeah absolutely okay you have to come back again at some point you can have me I mean anytime in the summer in the summer summer I'll come hang out with you all the time. I know because I just feel like it's so much more I just I just love spending time with you.

SPEAKER_02 1:05:33

I know I just spending time even when we're working we still have fun like we do work days where we'll get I mean we haven't lately because nursing school because my I'm not bitter about it at all. You know what someday you'll be happy I'll be done soon. I only have a year left so we're getting closer. But yeah it's we do our work days we have so much fun we just hang out we drink our just peaches it is an addiction it's the bad addiction how is That mine's almost gone.

SPEAKER_03 1:06:01

Because I don't know. I just am a slow drinker sometimes. Yeah. Well, anyway, thanks for coming.

SPEAKER_02 1:06:08

And thanks for having me.

SPEAKER_03 1:06:10

I always love having you. And if you want Chelsea to come back, which I think you might, leave it in the comments. Let us know.

SPEAKER_02 1:06:16

And if you don't, don't leave that in the comments because that'll hurt my feelings.

SPEAKER_03 1:06:20

And also let us know your drink order. And maybe I will try that next because I do think, I mean, I like to try new things sometimes. And maybe I'll find a new addiction. So you never know. But until next time, everyone, continue advocating for you and for others.