The Medical Detectives - Simone's Story: The Hidden Illness That Stole Her Organs

Episode Date: February 26, 2025

In this gripping episode of The Medical Detectives, we sit down with Simone, whose harrowing medical journey took her from being an active, adventurous athlete to navigating years of misdiagnoses, medical gaslighting, and life-altering surgeries. What started as severe menstrual pain turned into a baffling cascade of symptoms—black tar-like bleeding, debilitating cyst ruptures, and chronic pelvic pain—that left her searching for answers in a system that dismissed her concerns for years.Simone recounts how her symptoms escalated while living out of her van, forcing her to become her own advocate as she bounced between gynecologists, emergency surgeries, and specialists. After undergoing multiple procedures, including a hysterectomy and the removal of her left ovary, the real cause of her suffering was finally uncovered: Nutcracker Syndrome, a rare and underdiagnosed vascular compression disorder.Have a medical mystery or story of your own? Send it to [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

This episode spoke to me a lot because our guest Simone literally reminded me how important it is to just find the positivity of the situation. I feel like you're all gonna feel her energy immediately. She was like a ray of sunshine. And I think it's a different energy than I think we've ever had on the podcast in terms of like perspective. And I think it was not just positivity,

but realness to that positivity in that it's not just positivity, but realness to that positivity. And that it's not just pretending like things are great. You know, sometimes it's acknowledging things that are really hard and really suck, but it doesn't mean that you have to stay in that place and that you can continue to support yourself and love yourself through those really hard periods. Exactly. I would say especially taking the moments where you can create a little joy for yourself and doing it, even though it may feel a little silly or like, why am I doing this?

Because you need it, right? Because you need it. Hi, Simone. Welcome to the Medical Detectives. Hello. Hello. How are you all doing? Welcome. Hi, Simone.

Welcome to the Medical Detectives. Hello. Hello. How are you all doing? Welcome. You excited to tell our story? Yeah, I'm stoked to tell my story. I've been, from the start of all of this, I was very much like, okay, how can I use my

story to help others? Because the juicier it got, the more I was like, there's some nuggets in here that I think can serve other people. Oh, I love nuggets in any form. Educational, chicken based. Yeah. You know, if it's a nugget, I'd probably like it. Same, same. Well Simone, can you start us off with what was life like for you when you were younger? Very, very active. I was an athlete.

That was probably my number one identity. So I was playing most every sport. I used to find joy out of, I would go outside and I would run laps around the house. So I was very, very active. So very active and healthy throughout that time? Yeah. Other than my period, my period has always been a struggle for me. I started my period when I was in the third grade. So I was around nine years old. So earlier than most,

and they were always extremely painful. And I having grown up in the South in a Southern Baptist Church, was told that the sin of Eve is not only just that pregnancy itself, the birthing of a child, is painful, but an extension of that is having painful periods. So when I would go to gynecologists and tell them of these painful periods, it was often downplayed. And then sometimes there was religion kind of brought into it jokingly, which was like, well, this is just the curse of Eve that you have to deal with. Periods aren't supposed to be fun.

So I was downplayed for years and gaslit to the point that I just thought I was being weak about it. And I was still gaslighting myself until two years ago when one alarming day in November, 2022, where I was like, this isn't good. So context, I was living out of a van full time. So I'd been living out of it for two years at that point, traveling around, just enjoying the United States and parts of Mexico. So in November of 2022, I wasn't supposed to be on my period,

but I started bleeding and it was black tar and not the like, oh, it's some old blood. It was legitimate, like tar like black that was just coming out. So it's very jelly and not almost to the point. I was like, I don't know if this is blood. And so I was in the vein at the time that happened when I was in Arizona and I was about to go to Mexico. So I decided to just put a pin in it and say okay we're just gonna note this, which I did, go down to Mexico for three months. And when I was in Mexico things started getting worse. Like I started bleeding at times that weren't my period, cramping, more black tar kind of spread throughout. So I decided when I got back into the States, I made an appointment with a OBGYN in Colorado Springs

because I knew I had a friend that lived in Pueblo. They agreed that if I needed surgery, I could stay with them for that time because I didn't recover in a band. You are so freaking brave. Like, they're like, oh, I've got tar coming out of my lady bits. I'm just going to go to Mexico anyway. I'm just going to keep doing it. Well, to be fair, I think some of my response was a little bit of like shock and coping.

Like I was trying to just ignore it a bit. Like I remembered it. I put a pin in it because I'm in my van. I don't have access and I would have to kind of uproot myself to get to a place and I was excited to go to Mexico. I'd already paid for the insurance to go there. So I think a little bit of me was like, okay this might be just be a one-and-done thing. So that was another thing is when you are gaslit so much by the medical system and you go in and they keep telling you you're normal, you're normal, you're like I don't want to accrue

another medical bill to be told I'm normal and that I'm just over-exaggerating this blood, right? But again, I flounce on down to Mexico and didn't necessarily have a big episode like that again where the black tar showed up. It would be little bits, maybe fragments here and there, but I was like, eh, whatever. And then that's when I did have,

it was March, we're talking about taxes I don't know why I remember this so vividly and all of a sudden I just had this It was as if I just got a whoosh throughout my whole body and I became very very very irritated For no reason I'm sitting on the beaches of Mexico like there nothing had happened There was nothing was triggering triggering it. And I was like, uh, everyone, I gotta go to my something's going on. I gotta go to my van. So I go in there and I look and I'm bleeding profusely, just consistently. So when you say irritated, like mad, like you want to somebody? Yeah, like I just felt very like, like very rage. And I knew I was like, this feels very hormoney,

but different than usual. And it was like this, it just click, whoosh. And I felt it was as if it was just this whole sheet and it just, everything changed. And I go in my van and it wasn't a feeling, you know that feeling you get when you're like, I just started my period, like you fill the gates. I didn't feel that feeling necessarily.

So I go in my van, I am like, let me just go. I had to pee. So I go to the bathroom and I was bleeding and that felt alarming because it wasn't near my period time. It was enough blood to not, it wasn't, I would not call it spotting. It was enough to put a tampon in and a pad. But again, I'm in Mexico. So I immediately called that that night. I called, I was looking for OBGYNs in the Colorado Springs area, knowing that my van was going to be traveling toward Colorado when I left Mexico. And I got on the schedule for May 10th and I go in and see that OBGYN.

And I said, I want to pursue this surgery to see about endometriosis. Because at that point I had done some research on the symptoms about endometriosis because at that point I had done some research on the symptoms of endometriosis. I thought maybe it was to blame for some of this bleeding, this irregular bleeding. What is the symptoms of endometriosis? Endometriosis is when the endometrial tissue, which is the lining on the inside of your uterus, is found outside of your uterus. And so this is the tissue that is responsible for having a period, right, for shedding and the normal cramping that people may experience, but it's outside of that uterus so it can happen in times where you're not having your

period. It can cause abnormal bleeding, abnormal cramping, discomfort because it's located in areas outside where it should be. Yes. So, when I would come back from Mexico in May of 2023, I then travel my way out of Colorado Springs to see this OBGYNYN that it had good reviews. So I go see her. She does say yes this aligns with endometriosis symptoms. The gold standard for diagnosing endometriosis as it currently stands is a diagnostic laparoscopy. So it is surgery, there's anesthesia involved, there is no

blood test currently that will determine there's no scan. Some doctors can pick up on endometriosis via an MRI, but it's not consistent enough. So that's why diagnostic laparoscopy is the gold standard approach. So I can do, we could do the laparoscopy. I agree to that. I go have the surgery with her June 10th, I believe of 2023 and I wake up being told I have no endometriosis and That they did find three to two centimeter cyst on my left fallopian tube. So I woke up being told

Yeah, we found some things we burned the barotubal cyst off We also saw a lot of they did find a lot of scarring in my abdomen, which I was thought it was weird. I hadn't had any prior abdominal surgeries before. No abdominal injury, anything. And she just says, you don't have endo. I mean, we took the paratubal cyst, not really sure why you're having pain. And I'm like, okay, so they didn't really give me answers. I think I intuitively did not believe them. And the reason why is she took really great photographs. I intuitively did not believe them and the reason why is she took really great photographs. And when I looked at the pictures and I saw my uterus and my very enlarged fallopian tube and my left ovarian and you could compare them like my left fallopian tube was like 10 times the size of my right fallopian tube and I asked about it I was like what's going

on there and she's like I don't really know and I just remember being like this just doesn't feel medical this feels like a joke so that felt that was very frustrating and I'm continuing to have this pain and at the same time all this is going on I'm getting monthly ovarian cysts on my left ovary as well. Wait, so you're getting a cyst every month? Every month it's about five centimeters and will rupture and because they kept finding these large cysts on my left ovary we would do follow-up ultrasounds to see if they were shrinking. Well two months post-op I go in and have another ultrasound and they find like a 5.5 centimeters cyst on my left ovary. A new one. A new one that had popped up so I beg them to take it out. I'm like you have I'm living in a van full-time. I'm driving. I'm single at the time. I

Cannot put people and when these cysts rupture they rupture and I'm putting other people at danger on the road Well, this is needs to come out what happens when? Explain the process of this rupturing so you have a cyst inside Yes, and then what happens when they rupture? Like, what's the experience like? Yeah, so, and it's different for everybody. But I actually can feel the cyst rupture. There will be like almost like a pop. And I wouldn't, it's not a stabbing pain immediately, but as the contents of the cyst flood, which is blood, because mine are hemorrhagic, they've all been hemorrhagic cysts. And this is also an important part of this narrative in the future, is that blood then dumps into my abdomen.

I go completely white, I almost black out, and I either have to throw up or I have to go have a bowel movement, and it's like immediately I have to do that. Like there's no like I can hold it back. And that's because when blood enters the abdominal cavity, it's very irritating and they call it peritonitis. And that's an irritation pain inside the abdominal cavity. So the fact that you were having ruptured blood causing this irritation, there's no wonder why you were in so much pain. Yeah. So it'd be burning.

It was never, I wouldn't say it was stabbing pain, but I could feel it localized on the side in which the cyst would rupture. And I would just be sitting there eating dinner, grading papers. And all of a sudden I would just be like, oh no. Like I mean, it's hard. It almost feels like you're dying a bit because you're just like- Like a feeling of dread. Yeah.

And you don't have control. But it's also just like, I'm about to black out and I'm by myself. I'm living in a van full time, like out in BLM land, you know, doing my thing. So when I went in after my first laparoscopy and they had found this 5.5 centimeter cyst, I said you have to take it out because I can't Keep living like the way the life I live I could put other people in danger. I could wreck my van I could kill somebody I mean it was just very because I've done the whole like wait for it to shrink and mine don't do that. They rupture and so She goes in we do the second

that they rupture. And so she goes in, we do the second emergency diagnostic lap the next morning at 8 a.m. and she goes in and I wake up and she goes you have stage four endometriosis. I don't know how I missed it. The goal was to remove the cyst that was there which she did and in the interim I think while she was in there she was looking around and then this is what she saw the endometriosis. What? Yeah she's just like low-key like how many times had she been up in and then this is what she saw the endometriosis. What? Yeah. She just like low key like how many times that she been up in there at this point? This was her second time. And if it wouldn't have been for me, literally in their office, crying, begging them to take me into surgery.

And thankfully they agreed to it. I might still to this day, I mean, maybe not to this day, but I would, it would have prolonged everything. So I wake up being told, she's like, you have stage four endo deep infiltrating on your bladder because of the surgery we did. I didn't feel comfortable taking it out, but she put me on some drugs to suppress it. I then decided because of how she missed, like how I asked her, I said, I'm just curious from the first surgery to the second, how did you miss stage four?

The argument that she gave me was that sometimes it's dormant and when you go in, it might not be seen, but when you're on your period, for example, because it's fueled by estrogen. And then I said, well, then why didn't you tell me I should have scheduled my surgery when I was supposed to be on my period? That feels a little bit unethical. If that's your argument, then it's your ethical duty to tell me that as a patient, so I can schedule appropriately to make sure you find it.

Like I didn't know this. She was like, well, you know, it could have been that maybe, I don't know, you know, maybe I didn't look at your bladder as well as I should have. And I was just like, okay, I don't really trust the fact that by a whoopsie event, you found this endo. That's when I got on all the Facebook groups, did all this digging and research to find out, oh, if you suspect endo, make sure you're going to an endometriosis trained

surgeon. Because it just increases your likelihood. I mean, they've been through two years of training, literally teaching them how to identify the various strands of endo too. So I just decided on that one. I was like, love you, but I'm going to find somebody else. That's when I found Dr. Muldoon, who is a linchpin in this entire story and truly who saved my life. We love a doctor advocate. We love a doctor. At the core of who she is as an advocate and she just so happens to be a doctor. I found her and did a telehealth, sent my images in. They took a lot of photos obviously in the surgery. And you know she was like, yeah this is classic endo. She even said she's like, I don't know how she missed this but whatever. That's a conversation for another day.

And I was like, I don't know how she missed this, but whatever. That's a conversation for another day. And I was like, okay, cool. So we decided to go in and both my prior doctor and Muldoon, when looking at the images of not only the endo, but of my uterus, were like, this is pretty textbook adenomyosis. And at this point, I am so exhausted from this journey and just want to be pain free. What's adno? Just like when we were talking about how the endometrial lining, those cells are on the inside of the cavity, right? Adenomyosis is when those cells infiltrate the muscular wall of the uterus.

So the uterus is a thick organ with a hollow inside. You have the thin lining of the hollow inside, that's the endometrium, and then you have a thick wall surrounding that endometrium, which is primarily made of muscle. So those cells that are on the lining are not supposed to be inside the wall. And in adenomyosis, those cells have now infiltrated kind of throughout that thick wall. Gotcha. Yeah. With adenomyosis, the only way they can diagnose that is with a hysterectomy.

They take the uterus out and they test the entire uterus. So I just decided then that this was my third surgery I was going into in five months. And I was over it. And I didn't want to risk going in and doing the endo excision, waking up and still feeling awful, and then having to to tee up a fourth surgery, which was the hysterectomy. So at that point it was like, I've never really wanted kids, you know, just go ahead and take the uterus. So the surgery that I have is a hysterectomy.

When we went in, I ended up losing my left ovary because of the immense, there was irreversible damage because of the amount of cysts that had ruptured. So I wake up from that surgery and I feel, I really do feel good. They take the uterus out and they, they test the entire uterus and it came back negative. So I lost my uterus for no reason. And actually when I got that news it was pretty neutral. I was just more pissed that I had to lose my left ovary because now we're talking about like estrogen production and throwing me early 30s into early menopause. I was more more annoyed that it was irreversible damage to it.

So I feel good for about two months. I mean, I woke up almost a meet four days post hysterectomy. I was sleeping on my stomach because I think I was just so I was walking a mile every day. I just felt amazing for about a month, two months. And then two months post-op from that, I had probably my worst ovarian cyst rupture ever. I mean, to the point, at this point I'm living with my boyfriend now, I shouldn't say at the time. We are still living together and love each other a lot. So I'm living with him and the way ovarian cysts can rupture is like, a lot of times for me,

it was exercise, like via sex. And so we had just had intercourse and you know, I'm just laying there and all of a sudden I was like, I don't feel so good. So I got downstairs. I'm like, I just need to go drink some water. And I did blackout on the floor, middle of the winter. I think it was February at this point in January. And he comes downstairs and just finds, he thinks I'm dead.

And I wake up to him being like And I'm just like oh, and I even I think I said I go it's just an ovarian cyst So casually and he's just like what and he's like, are you okay? What's going on? And I was like just let's just give it an hour and within an hour I was a lot better my blood pressure had you know, I, my coloring had gotten better and he's just like, what is, and I tell him like, just this is what it is, if this happens in the future, this is how to go about it. Can I ask just one question? Had you ever had cysts on the right side?

Had they always just been on the left? My first sister I ever got was on the right when I was 27 years old. Okay. And it was a one and done. And then all of a sudden when I turned 32, 33, I just started getting like rapid fire system. I left ovary, which all of this will make sense. To the left but not the right. Yeah, all of this will start making sense. Now you no longer have a left, right? You only have the right. Yeah. Which is where the mystery keeps getting crazier because what happened.

So there's two things kind of going on. I'm likely, like my hormones, they told me, they said, usually when we do take one ovary, your hormones get a little crazy. So it is normal that you could get a cyst because of that. So I told Dr. Muldoon, I'm like, cool, you know, I can work through this. Let's just give my body time to adjust.

I started working out again, getting my body back in shape. But at this point, so the cyst happens, and then a month later, I just start going downhill again, like brain fog, major fatigue, pelvic pain on the right side again, more cysts starting to rupture. The symptoms just felt like they had shifted a bit. I was getting the pots-like symptoms like heart palpitations, super dizzy, super lightheaded, very nauseous, having a hard time eating, loss of appetite, left flank pain, blood and protein in my urine, recurrent UTIs for no apparent reason, chest pains. I mean it just felt like my body was breaking down because it was like, the symptoms were all, it wasn't this localized thing. It just felt like my body was shutting down. And at the time I did not label myself as a medical mystery. I think some of it was coping

because if I actually identified as that and accepted that I was a medical mystery, then I think there would have been way more hopelessness present. And I just kept messaging doctors asking about this. Like I was just trying to keep hope alive as much as I could. And Dr. Muldoon was a lot of the reason why it stayed alive because she took my case and posted it on a gynecological surgeon forum. So she was really trying to help me get to the bottom of it. And so she helped stoke my hope because she was like, we're going to figure it out. So because of her, I never felt like I was a medical mystery. I just felt like, okay, well maybe this is outside of gynecology, but she's going to get me into the right system, right? So I go back to Dr. Muldoon and I'm like, you know what? I don't care about medical menopause. Just take the right ovary out.

If this is what my life is going to be like, I will be on HRT for the rest of my life. And she, uh, blessings said, I understand the desperation. Let's leave no stone unturned because I want to rule some things out before we do that. I'm not saying we won't. I will do whatever you need and because of that she had just met another doctor just a couple months prior she had met a vascular, an interventional radiologist. They started creating a professional relationship so the reason why this timeline matters is Dr. Muldoon did not know Dr. Spencer when I originally did my hysterectomy so she didn't even know to say, hey, before we do this, go get this checked out. In between November 23 and July 24, she meets Dr. Spencer.

So when I come back to her and I'm like, this is going on again, she's like, hey, I just met Dr. Spencer. I just learned about vascular compressions and that these vascular compressions sometimes mimic gynecological symptoms. Specifically, May-Therner syndrome, which is a compression of the left iliac vein that stretches between your belly button and your left hip. So it's a pretty long and pretty massive,

I mean, it's pretty big vein and also some other vascular compressions that are usually correspond. So if you have one vascular compression, you often have multiple is what I've learned. A vascular compression is just like a constraint on the vein? Yes, if something is cutting off the flow to some percentage. Oh, gotcha. Whether it's pinching it, so there is some blood flow going through, but not a lot.

Some of it is completely cutting it off. She had said, you know what, I'm really thinking this could be vascular. Let's have you come in. We'll do an ultrasound on your ovary. Just see what that looks like. We spoke a little bit in person. I got the referral to see Dr. Spencer. That was another like two to three month wait.

That was just kind of like, I called every day, every other day, just very kindly asking Leah, the front desk person, like, it's me again, is there a cancellation? And was able to get in a week earlier, but some of it I was so anxious because I remember thinking almost all the pennies were in the vascular basket at that point because Muldoon was like, I don't want to remove your right ovary, I will if we need to, but I really, really don't want to. And her intuition was, I don't think this is ovary related.

And I don't think the answer is just taking the organ. But I remember being like, what if I go to my vascular appointment and they say everything's fine, which a lot of doctors had said, so I was very anxious. I was losing sleep because I was just like, if this isn't it, then I don't know where the path leads after this. And that's where I started feeling the hopelessness. So I go see Dr. Spencer. My appointment was at like 3.15 and I didn't leave till 6.30.

And we did an ultrasound just to see if I had any vascular insufficiency. So we do that. I go into the room, wait on the nurse practitioner to come in and she just starts educating me on these vascular compressions. She tells me about May 3rd, she tells me about Nutcracker syndrome, which is a compression of the left renal vein. In the vascular compression world, there are about five different compressions that you can have. A Nutcracker is the most serious. It's the one you really don't want. And I remember being like, why are you telling me about Nutcracker syndrome?

But I also remember being like, okay, they're being thorough. This is fine. And she's like, and you know, for Nutcracker syndrome, if you are diagnosed with Nutcracker, then there's four treatment options, but the two that we recommend are more invasive, which is you would lose your kidney or relocate. And I remember being like, that sucks for those people.

Like that just, that's, gosh, you know, cause I was just going in thinking it was just May Turner. So I'm like, I don't know why she told me about Nutcracker. And she was like, okay, well let's look at what Dr. Spencer had to say about your scans. And she's like reading through it and she's like, okay, so your May Turner is, it was kind of inconclusive. We couldn't tell. She was like, but you have a severe case of nutcracker syndrome. I remember the moment she diagnosed me, I just got this overwhelming feeling to start crying in the office because I was both relieved, but I also knew, oh, this likely means I got to lose my kidney or relocate it.

So this journey is just starting. Like I was thinking, can we just get to the end? Are we at the end? And it felt like it was just revving up again. And it was almost that like, I just got done running a marathon and now you're telling me I have to run another one. And I don't think I have what it takes to do this, but you don't have an option. And that's the most exhausting thing. You're in a tunnel with no way to turn back. And the only way out is to go through this extremely scary surgery.

And that's when I think it actually was because this whole time I was like, what are you talking about? Nutcracker? That sucks for these people. And then in the next breath was you have a severe case of this. And I was like, oh, I'm one of those people. And I just, I remember getting this. I go, oh, okay. And then I went into shock. I just immediately went into the grieving phase and I just was shocked.

I remember bargaining a little bit because I grew up really religious. And even though I've been out of it for 15 years, you're kind of like, I mean, I was growing, I was raised in a religion that I remember when Katrina got hit with a hurricane, a lot of chatter in the church was like, well, you know, it's because they practice voodoo down there and that's just God spiting them like that narrative.

So I was like, oh no, fighting me and this is because I walked away from the church. You were told that your uterine issues were just, it was Eve, you know, because you were a lady. Exactly. But there was some hope that I wouldn't have to lose my kidney because the scans I did aren't always the best diagnostic tool. So I had to do a diagnostic surgery for them to really know for sure. So I got scheduled to come back in and do that. And I went in telling her, if I May-Therner while you're doing the diagnostic venogram, which is they put you under, they do anesthesia so that

they either go through your leg, a vein that's in your leg or in your neck, and I said if you go in and you see that compression, I'm so done with not feeling well, shove a stent in there. So she goes in, she does the venogram to check for two things, to check if I have May-Therner syndrome, which I did. She stented that and she checked for Nutcracker syndrome. So I do the diagnostic venogram plus the stent placement for May-Therner. I wake up, I'm told that I had severe May-Therner,

we did the stent, and that I only had a 49% compression of the left renal vein. Thus, she proceeded to say that she didn't think any of my symptoms were due to Nutcracker. We'll see where the cards fall, obviously. So I was ecstatic. I was like, this could be a one and done, you know, and I can have my life back. I got about two good weeks out of that, and then all of a sudden, classic Nutcracker syndrome symptoms started to happen. And this is kind of the, like with the plumbing system, if you think about it. The theory was that if they open up the left iliac line, that pressure might actually open

up the left renal vein a little bit more so I could avoid a very invasive surgery for Nutcracker Syndrome. And two weeks later, I started getting classic nutcracker syndrome symptoms. What are classic nutcracker syndromes? Yeah, left flank pain. Either micro or macro traces of blood in your urine, protein in your urine, chronic UTIs. So my symptoms start getting worse after May-Thurner. So what's happening with the left renal vein compression is you have your kidney

and the left renal veins coming out here. Well, the nutcracker part is you have the aorta and the superior mesoteric artery. Normal anatomy provides enough space for your left renal vein to thread that needle. Nutcracker anatomy is this is cracking. This is like a nutcracker, right? Like we're cracking a nut. It literally looks like you're cracking somebody's nuts by what you're doing right now. Yeah. I don't know if it makes sense. That's what I'm saying. So I had a 49% compression, which is considered moderate.

So 51% of my blood is returning back to my heart. Yeah, yeah, yeah. So the rest of that blood was pooling. And when I had a uterus, that's where it was going. What we found out, and this is where I said, remember the paratubal cyst on my left fallopian tube, the chronic ovarian cyst, hemorrhagic ovarian cyst rupturing on my left ovary. What was going on is there is from the left renal vein, there's another vein that comes down that it that's the left gonadal vein left ovarian vein okay what was happening is because of

this compression the blood has to go somewhere thank God it doesn't just shooting you down it starts refluxing down my left ovarian vein into my left ovary into my left fallopian tube, into my uterus. So the blood, that tar blood that started this whole journey, this black tar blood that started this whole journey was likely left renal vein, was like kidney blood that was being refluxed into my reproductive system. So curious, is endometriosis a symptom of Nutcracker syndrome? So that is a it's not a direct symptom. There's not a lot they know about vascular compression Especially nutcracker there are working theories out there that there is a relationship between vascular compressions and endometriosis But there just hasn't been enough research unfortunately, and that's why

So many people have such a hard time getting diagnosed with these compressions. So we don't know for how long, how many likely years, my body has been rerouting this blood using my reproductive system as a host, and to a point that it got so bad that I lost my organs because of it. All of that damage was because of Nutcracker syndrome, was because of the reflux blood from the left renal vein being compressed. Using your uterus as a host.

Yeah, using my reproductive system as a host. When we took away the host, that blood had to find new routes to go. And that is when classic nutcracker symptoms started to arise. So I was getting headaches, major tension along the base of my neck, my traps, and I wasn't even working out. It was just like I couldn't get enough massages to keep my body. It was just in fight or flight mode. I had collateral veins that were working their way into my chest so I went to the ER. I was having pulmonary embolism scares. Like I woke up at 4 in the morning with just this major chest pain, wasn't able to breathe really well. If I stood for a little too long, sat for

too long, if I had to go grocery shopping I had to get one of the motorized carts. I was just losing so much of my life and who I was. So that's when I had to get one of the motorized carts. I was just losing so much of my life and who I was. So that's when I decided to start advocating for myself. I went on a Nutcracker Facebook page and found out that there's four different surgeries you can do for Nutcracker. Two of them are less invasive. But the less invasive options also have a higher failure rate. So I decided to go with the more invasive option. I chose the auto transplant route. The reason why is I just wanted to, everybody has their reasons. I just wanted to give myself the best chance, keep both kidneys since my right one's a little

bit weaker. We went the, what's called a traditional auto transplant, which is that they moved my left kidney to my right side of my abdomen. what's called a traditional auto transplant, which is that they moved my left kidney to my right side of my abdomen. So I now have two right kidneys. Whoa. Yeah, so we'll get to that. I didn't even know that was possible.

Yeah. How does moving a kidney solve the problem with the vein being pinched? Because so what happens is it takes it out from, we're gonna take this out and then relocate it to somewhere where there isn't a compression option. So you're moving the organ and its vasculature with it and you have to hook it up to the right side

of the inferior vena cava and the aorta. That sounds terrifying. Oh, it- Were you panicked going through this? Oh, I was on heavy anti-anxiety meds. Heavy. Like, I was really, really... I was breaking out in hives. I was having a lot of anxiety attacks. I don't think we've talked about this yet

on the Medical Detectives, but I think whenever you get a chronic illness, you also kind of get a little bit of mental health issues because it's just not an easy thing to take on. Your whole life has to change things you thought you knew about your body, you don't. And so it makes sense that your body and your mind would both struggle to catch up. Right? The grief that's involved.

We don't talk about that grief that's there, the anger that comes with it, right? That like, why me? The mourning, the mourning your previously, you know, healthy body. Absolutely. I told Kyle, I said, whatever is about to happen to me is going to change me for the rest of my life. And I still grieve a lot. Gosh, this is gonna make me cry. Who I was prior to all of this was very vivacious, very active. I mean, my mother would just be like, you give me most of my gray hairs because I was ice climbing and skiing and doing shithem. I don't want to sit here and say that part of me is gone, but when you have stuff like this happen and a lot of people listening can understand, you're not invincible anymore. You realize that you really don't have control like you thought you did. So I do the traditional kidney auto transplant at University of Wisconsin Health

in Madison, Wisconsin. So I had to travel from the Denver area up to Madison and be there for approximately three to four weeks. And that's including surgery. That's including the time I was inpatient, which for me was nine days. And then I had to stay in the Airbnb until I was discharged at my follow-up appointment, barring that there were no complications that happened. The surgery itself was, I think, around four to five hours. So the process too, so people understand is you can't just go and see a transplant and then be like yeah we're gonna sign you up for a transplant. So I had to send in my images and they have

every Tuesday at UW Health they meet as a team and they look at their potential cases and they'll see the images and they'll either deem you like no this isn't Nutcracker or yes this seems like like Nutcracker. And then you'll make it to stage two, which is they invite you for an initial consult in person. So I graduate, I get to the, I felt like I was going through my grad school applications again. Like I was so stoked. I was like, yeah, I made it to stage two. So I go in, I do a full day of scans, very, very detailed images of your kidneys. And this was, they told me to help them, if we do surgery, it will help them prepare to know what the anatomy is before they go in.

So there's no surprises. I also had to meet with a social worker to make sure that I was mentally stable enough for a surgery like this, which I appreciated. And I met with a nutritionist because I had also lost a lot of weight. So they wanted to make sure that I wasn't too frail to do a surgery like this. And then they'll call you a week later after they meet again to say, do we think this person is a viable option? And that's the social worker weighing in, the nutritionist weighing in,

the doctor themselves, everybody saying, there's got to be a yes across the board for everyone. So I then get the call saying, congratulations. This is when I got broke out in hives because I was both excited, but I realized the barrel I was staring down, you were accepted and we wanna get you on the schedule for surgery.

So we drove up to Madison that next month and had the surgery and it was a very spiritual life awakening experience for me in a lot of ways. And so now you're how long post-op? Today is two months. Holy crow. So this is this is new for you. This is very new. So I'm two months into having two right kidneys and I feel really really good the spiritual component of this

And maybe some people that listen so understand prior to knowing what it feels like for your blood to be Corroding you Slowly, I mean it's a slow death like you I was in like a I'm slowly dying Yeah, and I was very aware of it And so I know what that feels like intimately. To get the organ removed, that now I know what it feels like for my blood to be actually pumping the way it's supposed to, without a compression.

There's such a beauty in that meaning that I now understand what blood feels like. Whereas prior you don't have anything to base it off of, because you're just born with your blood doing what it's supposed to do. And so for me, it's like I feel the life of it. And so if you don't have that, and I think people with chronic illness can understand that,

or maybe can take what I'm saying and specify it to their specific situation, which is I intimately am aware of what life feels like and what it feels like to be corroding you to death to now be like, oh, that has been very life-changing for me in a lot of ways. I just saw this quote. It's actually in response to the viral angler fish. Yeah. Okay. And it was how tragic it is the things we take for granted that others would die for.

You know, we take for granted that our blood just pumps stormily throughout our blood. You're never thinking about it. You're never thinking about it. You're never thinking about that until it's not working properly. Yeah, exactly. And I, that gave me, I mean, one of the things going into the surgery I talked to Kyle about was like, I've accomplished a lot in my 35 years of life to the point that if I did die, I'd be pretty freaking proud of myself.

And I remember waking up and being like, there were a couple of loose ends that I was like, if I did die, these would be some small loose ends that I wish I would have tightened up and looked through. So when I got back to Colorado, I contacted some people and said, hey, like I have some epiphany moments and these are things I want to start pouring into. And I think that's another thing gifts that chronic illness can provide is it makes you look at your life in such a way. Because my whole thing is when I am on my deathbed, I want to be proud of the values driven life I've done. I want to be proud of the things

I have produced were empowering of other people. And that's a lot of reason why I do podcasts like this is maybe my story can empower people to know what surgeons to seek out what like helps give them voice and to advocate for yourself. My story is not one story I posted probably a month after my kidney auto transplant. I actually posted my story I said I lost my uterus and left ovary when I really needed a kidney auto transplant. And so many people came out of the woodwork that was like, this happened to me too. People were sharing it. I was doing what Dr. Muldoon did for me, which was advocate for me to say, leave no stone unturned before you think this is just gynecology related when it could actually be vascular related.

100%. Absolutely. And I think one thing that I will break down for people right now is I think your story is a great example. When you are in a position, you have no idea what is wrong with you. You don't know. You've seen doctors.

You're at dead end. You don't know what's going on. It's to think not so much in terms of symptoms, but in terms of systems. Is this a problem with my nervous system? Is this a problem with my skeletal system of my bones? Is this a problem with my vasculature? The doctors who were involved in your case,

had not been thinking in terms of those lanes, right, in terms of your OBGYN thought, I know someone who is an expert in a totally different system than me. And I'm going to reframe this, these symptoms. What if it was there in their lane, right? In their system lane. And that's eventually how you solved your problem. Absolutely. I think what people don't realize is that most physicians have a pretty narrow scope of diagnoses that they are comfortable with

and have experience with and are on the lookout for. And we talk about this a lot because a lot of the people we interview have rare diseases. But in the end, when you find that person, that doctor, it honestly does not even matter what the specialty is, right? Or even if they are the end doctor for you, right? In the end, it's finding that person who's going to go the extra mile to say, okay, I'm going to find the person

who's going to be your end doctor, right? I'm going to research, like, what are the new therapies and are there things that we can try? And it's really about finding that person. And that's what she did. And if it wasn't for her, truly, I don't know where I would be right now. Well, Simone, thank you so much for taking the time to share your story and be really vulnerable and open up about things that are beyond the medical aspects of your medical mystery and I think again, while I would say that I have heard of Nutcracker syndrome before, I certainly was no expert and I love and appreciate learning about

new syndromes and diagnoses and think about how I can be on the lookout for my own patients. Yeah, absolutely. And I'm glad I could bring that. Hopefully others that listen to this podcast, whether for themselves or medical doctors will realize that it's a thing. And I don't believe it's rare. I believe it's just underdiagnosed and how much could it be the culprit? If it wasn't for Dr. Muldoon literally saying, I want you to know, I hear you, we're going to get this fixed. Let's just leave no stone unturned.

And so I think that that's my main reason for doing this is just awareness so yeah thanks for having me thanks for listening to my story the whole gambit. The Medical Detectives is a soft skills Media Production produced by Molly Biscar. Sound designed by Shane Drouse. If you have a medical story you'd like to see featured on The Medical Detectives, please email it to stories at themedicaldetectivespodcast.com. The information provided on The Medical Detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals,

including doctors, we are not your personal doctors and no doctor-patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified health care professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show. If you are experiencing a medical emergency, please contact emergency services immediately or consult a

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