Case #23: Mik

I remember having my friends drive me to the er once and someone had to carry me into the er because I could not even move.

The severity of the pain is not necessarily correlated with the type of disease or like the extent of the disease, so then people don't get the support that they need. They feel like they're the only one going through it.

She'd say, I cannot live with these symptoms all the time. I just want to live a quote unquote normal life.

I was at a loss, like I'm looking down and I'm seeing red and no one's helping me.

How terrifying would it be to fight an unknown enemy, one you didn't recognize and didn't see coming. What if that enemy was coming from within a disease that even doctors couldn't identify. Nearly half of all Americans suffer from some chronic illness, and many struggle for an accurate diagnosis. These are their stories and Lauren bred Pacheco and this is symptomatic. Nick naturally radiates energy, joy, and warmth with her lively, outdoorsy spirit. She makes everyone she meets feel

I feel like I'm a jack of all trades, but mainly I'm a social media creator. I started as a fitness coach on Instagram and YouTube, and then I shared my eating disorder recovery online, and then I started sharing my health issues.

Online and gained a community from that.

Well, when you're not doing social media, tell me some of your favorite things to relax, and I'm sure they may include your dog Blue.

Oh, yes, they do well. Blue just got surgery. He got doggy acl surgery. But usually it would be taking him for hikes or like walks and stuff.

And I'm a.

Big rock collector, fossil collector. My family has a house in northern Michigan, and if anybody knows what a Potoski stone is, I'm always like polishing them in my backyard and showing my nieces and nephews all of the cool stuff that I find.

For people who don't know, Mick, how would you describe to people.

Oh, gosh, there's six of us siblings, So Mikayla is the fifth.

That's Christine, mix older sister.

She's more on the quiet side since there's so many of us, somebody's always trying to talk and over talk to each other. She's very thoughtful, she's a very genuine person. She's just a gem.

She's really really special.

Christine, a nurse practitioner, has always been mixed anchor. As an older sibling. She recalls mixed struggling with unusual health issues from an early age. Do you remember how early now looking back, the staff infection issue started.

I mean, kids fall all the time, right like they're always getting abrasions, knees, palms of their hand. But I vividly remember her as a little toddler getting one and my parents were like what in the world, and a lot of antibiotics. I mean, she'd get poked by like a pine needle or something and it would turn into a staff infection.

Health issues that seemed to evolve as Mick grew older.

I started hitting puberty in elementary school way before a lot of people my age did, and my parents kind of freaked out and took me to a bunch of doctors. So I didn't find that out until probably a few years ago.

That's interesting, And what did they chalk that up to the fact that you had so many female siblings that sometimes the hormones just sink.

I don't think they gave my parents any answers, if I remember correctly. I think they just chalked it up to me hitting puberty early.

Little signs of mixed health issues appeared early on, but it wasn't until she started to menstruate that suspicions began to rise.

I remember my first period was between three weeks and five weeks long. I can't remember exactly because I was so young, but I asked my mom, and I asked my siblings.

I was like, is this normal?

And they were like, yeah, sometimes it happens. My mom had heavy periods and she was like, I'm fine. And unfortunately, we've been taught that a lot of things are normal that aren't at all.

And so was that difficult now looking back going through that at such an early age.

Yes, because when I hit puberty in elementary school, I dealt with a lot of acne and struggles with acne very young, and I remember like carrying a pot concealer around with me in literal elementary school because I was so worried about what people would say. And I even wore like swim shirts around whenever I would go to the pool because I had acne all over my back and chest and arms.

I hadn't even thought about, of course, the hormonal aspect, and if your body's being flooded with that early, you're going to manifest what most kids are going to navigate in junior high in high school in terms of of acne. Yeah, that must have been a lot.

It was, for sure.

She was on medications for the acne, and again she was young. You don't go searching for other problems at that time because the majority of your peers are also going through that. Hers was just taken to the next level.

And so the symptoms persisted. Now in high school and a standout on the soccer team, mixed minstrel cycle began to disrupt her everyday life.

I remember being in the middle of a game and having to run off the field to change my super plus tampon. Like I had to change these tampons at least three times an hour, it was so heavy.

She is an incredible athlete. She had to retire from her soccer career pretty early, earlier than she wanted, because she blew her knee out several times and had some major surgeries on the knee and then ended up getting concussions.

So now, on top of the symptoms piling up, your body must have been sent through a spiral going from all that time playing soccer to now not having it at all.

I was really confused because I was so athletic, and then all of a sudden, I didn't even know how to work out, and I didn't know how to do anything. I didn't know how to eat, I couldn't really socialize. It was hard for me to put myself out there because all of my friends and my whole entire life surrounded soccer, and so I essentially had to step into this very unfamiliar life that I did not know how to live at all.

Over time, Mick started to feel lost in her own body, turning to fad diets and facing the pressures that often accompany them.

My parents thought it would be good for me to dive head into something that would take discipline, because I was an athlete, like I loved having something to put my energy into and to see progress in. And that's exactly what I did, except it took.

A very wrong turn.

I was turning seventeen at the time, and I was following a diet that was having me eat less than a toddler should be eating.

Mick was developing an eating disorder that would soon consume her life, adding to the stress from the mysterious undiagnosed illness that continued to linger in the background. How did your symptoms then progress to the point where you realized that you needed to seek medical opinion.

Well, my acne got exponentially worse, and I also started getting UTIs right after my big life shift. I also remember getting a happy trail on my lower stomach and getting some hairs on my chest, in my chin and in the mustache area, and my sisters also dealt with that to some extent.

So I was like, Okay, Like I guess I'm just going to keep going.

That is just the genetic Yeah, you know card you were dealt.

Yeah, And so I kind of lived in that cycle for a fairly long time, being on antibiotics for acne, trying different birth controls because I was starting to get sexually active, so I was actually suppressing my period around that time as well, and I was shaving all of the hair that wasn't normal for a girl to have in you know, social society standards.

How did your UTIs progress to the point where they became emergency situation?

Honestly, they were always emergency situations. It hit me so badly. I would be fine one minute and then I wouldn't be able to walk the next. So I actually went to the emergency room quite a bit. I remember I was sitting in my bedroom at my house and I was watching TV and it hit me so fast, and I told my parents and they were like, oh, yeah, like it'll go away on its own, you know, likeberry juice. Yes, this stuff happens all the time. And so I after

So then she just kind of ignores it because she's just like, well, this has to be my norm. I guess I'm just gonna live with bladder pain and puts it off, puts it off, and then it just gets worse, and that's when she has to go to the emergency room because she's like, well, this is terrible, so painful.

That's why they immediately gave me antibiotics every single time, without even doing a culture test because my symptoms were so severe, I was either urinating blood or like I was screaming in pain.

It was so painful.

For somebody who can't understand or hasn't experienced. Can you just explain in as much detail as possible what that pain felt like?

Oh?

How do I explain the most excruciating pain? I mean, you can't think. You can't walk. It feels like knives are coming out of you. When you're peeing. It feels like you have nothing else to pee, but you have to, and your body needs to. And your body is so swollen. Your lower abdomen is so swollen it feels like stabs.

It really does.

By now, Nick is twenty and four years into a more search for answers, finding herself in and out of the er as her symptoms continuously flared. She started seeing specialists, hoping for the relief she needed, but no one could seem to uncover the real root of the problem.

And by that time, my bladder issues started to get exponentially worse.

I was unable to walk.

I remember having my friends drive me to the er once and someone had to carry me into the er because I could not even move.

What are you being told it could.

Be PCOS and inner social cystitis.

Okay, so polycystic ovarian syndrome, and what are you being told to do?

Birth control and elimination, diet and bladder medication.

But I just find something heartbreaking, Mike, about the fact that when you went to your gynecologist to get on contraceptives, you didn't talk about the hair and the cycle issues, and then you go to an intercrinologist and you're not talking about the gynecological issues.

I think a lot of it has to do with being self conscious and overwhelmed, because at this time I was starting to gain my independence. I was in college, and I was going to these appointments alone. I remember being so nervous, to the point where I would leave appointments and kind of forget something. But then I would be like, oh, you know, like it's fine, it doesn't matter.

So you know that something's wrong, you just don't know how to advocate or articulate your issues.

Yes, it kind of just felt like I was in and out of those doctor's appointments. But after every doctor appointment, I would kind of leave with some sort of confidence that like, it wasn't as bad as I thought.

It was.

With possible PCOS and interstitial cystiitis diagnosis already on the table, Mick visits a gastroinrologist who notes her bladder frequency and pain, ultimately diagnosing her with IBS, a label often given when no other clear cause for a GI issue was found. Meanwhile, as her symptoms piled up and she transitioned into college life away from home, Mick began sharing her fitness and diet routines online, quickly gaining a following and praise for

Yes, And that was when social media had just started to blow up. So it was literally the perfect storm for everything wrong to happen. I started posting online and gaining positive feedback, and on the inside, I felt so lost and confused, and all I could do was follow the positive feedback that I was getting.

I mean, you're going through all of this at such a young age. You said that just managing your UTIs alone felt like a full time job. You must have been so psychologically not just exhausted, but detached from yourself.

Yes.

And I was so focused on trying to make myself smaller that I wasn't focused on the pain of my body. I wasn't focusing on my digestion. I was focusing on limiting my calories, going to the gym.

For hours a day, twice a day.

But at this point in time, I also noticed my body swelling to an amount that.

Was not normal in what way and how So this.

Is interesting because at the time I was dealing with binge eating disorder. So in high school, when all of these things started happening, I had orthorexia and then it kind of went into bulimia and then binge eating disorder.

Okay, so you have a triple threat in terms of eating disorders. Yeah, and I just want to break it down. So orthorexia, for people who aren't familiar, it's when you become almost not just addicted, but imprisoned by clean eating and you cannot deviate outside of that without In your case, it triggered bolimia.

Yeah, and then I thought I could just cure that without going to see somebody. And I was like, Okay, I'm just going to stop purging, and that led to binge eating disorder, and so I chalked the swelling up to binge eating.

Feeling consumed by her eating disorder, Mick stepped away from college and entered an outpatient recovery program, pushing her other symptoms aside. But once in recovery, she was finally able to address the underlying issues that had been affecting her since childhood.

She was in recovery from her eating disorders, and then she started to realize that, oh, I'm having worsening cramps. Then her PMS symptoms really escalated.

Tell me about the team and they start pointing things out.

Yeah.

I was mainly my dietitian who started to point things out because she noticed my inflammation was way worse than what she was expecting, so she had brought that up, and the symptoms just kept getting worse. In what way, I was urinating blood frequently, My lower stomach would cramp a lot, and the frequency of urination was around six to eight times per hour at its worst.

This is when Nick began opening up to her family about what she was really going through, struggling to cope with the relentless nature of her evolving condition. With her eating disorder finally under some control, the real impact of her other symptoms started coming into sharp and alarming focus, her.

Telling me I cannot live with these symptoms all the time. This can't be my new normal. Just seeing her so frustrated, she'd say, these are debilitating. I just want to live a quote unquote normal life. It was just the constant calls that she would give me. I was like, Okay, we need to sit down and have some real conversations.

That is when my fitness Instagram started to blow up too. So I was gaining weight while I was dieting, and so I was photoshopping my photos. I was trying to portray this perfect lifestyle that obviously wasn't a reflection of what was going on in my actual life. And that's when I decided to move home for recovery. It was the lowest of lows. I wouldn't wish that on anybody.

We'll be right back with Symptomatic, a Medical Mystery Podcast. Now back to Symptomatic a Medical Mystery Podcast. Mixed symptoms started in her teens, with acne and early periods escalating into constant UTIs, bladder pain and even bloody urination, unsure of how to advocate for herself. Each symptom was treated separately, never seeing the bigger picture. Though she gained some clarity

Emotionally, I mean no one would help me, Like at the emergency rooms. I was also getting handed drug addiction pamphlets because I was going so often, and I was at a loss, like, am I really just making this up? I'm looking down in the toilet and I'm seeing red, and all of my blood tests are perfectly fine, all my CT scans are perfectly fine. I remember one er doctor also said like, hmmm.

Are you constipated?

It looks like there's a bit of stool build up in there, and I was like, I'm constipated all the time.

And that's when your sister Christine stepped in. How did her expertise as a nurse end up coming into play?

So I called her bawling my eyes out, and I think she was an er nurse at the time, and I was like, Christy, I am at my breaking point right now. I'm in so much pain. I cannot live like this. Is there anyone that you can recommend me to because I need to see someone fast. I need to see someone that will actually treat me and look at my issues. And she got me set up with another urologist.

I just want her to note that she's not alone through this. I mean, she's physically going through the symptoms, but she's not alone. And I think that's really important for people with chronic illness to remember that they have that support system or to find that support system, because you can certainly get in your head.

She was going to every doctor's appointment with me at that point because I was scared that I was going to miss something, and she was like, I don't want to miss anything. I want to help you move through this because you shouldn't be alone.

And I can't explain.

How helpful it was, regardless of her nurse practitioning degree, just having someone there that I could speak to because I was getting thrown medical terms left and right, and she was able to actually understand them. When I didn't, or if I wasn't able to ask what that was, she was able to explain it to me afterwards.

She would always tell me something is wrong, and I think you have to really trust your gut, and she was really trusting her gut, like this cannot be just a UTI or just a IBS symptom. And I always tell her, I say, Mick, you have to be an advocate for yourself with your health. Providers know you as the next patient. They don't know what you've been through

Finally hearing her full story, the urologists thought he might know what was wrong and started with a sistoscopy, essentially putting a camera into mixed bladder to get a clearer view. But even with this high tech test, nothing unusual showed up, leaving Mick feeling discouraged once again. Some medications offered temporary relief,

Birth control, bladder medication, and elimination.

Diet, eliminate what at this point I know?

So I stopped drinking anything but water, no acidic fruits. I was scared to eat any fruit except for bananas, any spicy foods. They tried to make me stop eating gluten and dairy, but I was not in the mental state to do that yet with my recovery, and so I was basically eating bland food and water every single day. I avoided everything because I was so scared. I was terrified.

You're feeling probably at your worst, and what kind of response are you getting.

I was at the height of my social media career and I was slowly deteriorating. I hadn't really opened up at all at that point online, but I just had all of these business opportunities coming at me left and right, and a lot of them I couldn't say no to because I was growing my own business.

Okay, in two to three years, you just powered on because from the outside world everything looked great. So what is the turning point?

I began sharing a smidge about what I was going through to my Instagram. I don't know if there was an exact moment, but my doctor's appointments became so frequent that it was a second job, you know. People started dming me things like, oh, yeah, I have frequent UTIs and like I have interstitial cstiitis, And it started conversations that were really really important for me.

That's amazing. So once you finally kind of let down a little bit of your guard, you had a very authentic exchange from people who had weathered similar experiences. And then you come across Bendy Irwin's story.

Yeah, one of those conversations ended with someone sending me a link to Bendy Irwin's YouTube video.

Bendy Irwin follows in the footsteps of her famous father, Steve Irwin, as a conservationist and zoo keeper. She has also been very open about her own health struggles.

It was ten minutes long, and all they said was, I think you need to watch this. Maybe it will give you some answers, and I hope it does. And I was laying in bed. I watched the full thing and my jaw.

Was on the floor.

I remember feeling so overwhelmed with emotion to the point where like I might cry here because I was like, I've never heard anybody go through what I had gone through, and it was so emotionally overwhelming for me.

Some of her followers sent Mick additional resources and recommended doctors, one being doctor Shivakamini som Asunderum more fondly known as Doctor Minnie. Mick came to the appointment fully prepared with a journal tracking her pain symptom cycle, and even a body map pinpointing exactly where she felt the pain. When she arrived, she was greeted by Doctor Minnie's nurse practitioner.

The nurse practitioner basically gave me an option to do birth control, to keep as is and for us to manage symptoms, or to do excision surgery laparoscopic surgery. And she told me very point blank that based on my symptoms, if we were to do excision surgery with Doctor Minnie, she would find something.

What did she represent to you at that point my life?

Like she was able to give me hope that I could have my life back. I was twenty seven years old and in the worst pain that I never imagined being impossible for so long, and she looked at me and she just said, I'm going to help you, and we are going to do everything that we can to get you through this, because you deserve to be pain free.

And I had never heard that before.

Clinging to that glimmer of hope, Mixed scheduled her surgery right away. After nearly a decade of pain and endless searching for answers, she finally had a shot at relief.

I woke up from the surgery and I was loopy, and I didn't see doctor Minnie, but I asked the person there monitoring me if they found anything, and they said yes. I remember saying over and over again, I'm not crazy. I'm not crazy. I'm not crazy. I'm not crazy. And after a couple hours, I was in a room where I got to see my boyfriend, where he was able to tell me that I had stage two endometriosis.

It's very validating to go so many months, weeks, years just saying, oh, this is just PMS, this is just IBS, to finally get that. It's like a huge weightlifted off your shoulders. In that moment, I think there was just a huge sense of relief, almost like we could have had a party.

This moment of validation was a major breakthrough for Mick. But knowing the cause didn't mean the road to recovery would be easy. So in Layman's terms, how would you define endometriosis?

What I tell people it's what comes out like period blood.

That tissue is called enemetrium.

Enemetriosis is where something that looks like that tissue grows outside.

Of the uterus.

That's doctor Karen Tang, a gynecologist and author of It's Not Hysteria Everything you need to know about your reproductive health, but we're never told.

And the main symptom that it causes is really severe pain, mostly pain with periods, pain with sex, and also it can cause lots of inflammation of the pelvis, including all the organs that are nearby the rectum, the bowels, the bladder, the muscles, the nerves, and that inflammation then causes all sorts of other symptoms like really severe constipation, diarrhea, pain with bowel movements, bladder urgency, pain with exercise, or standing,

How do you handle the psychological component of that as someone who is treating somebody who has not felt seen or heard and is dealing with this very overwhelming condition.

So many people have gotten the point where they're suffering from severe depression or anxiety and stress because of what they've been through. Because depression, anxiety actually worse and pain.

By the way, it also worsens balelfunction.

So it's sort of a nasty cycle, like you kind of have horrible mood symptoms because you're suffering so much, and then the more mood symptoms you have, the worse you feel.

It's so fascinating because I remember a period in time where endometriosis was almost considered a made up condition, that it was a one size fits all for any complaint that women seem to have. What are some of the most prevalent misconceptions that still abound. So enemy triosis is very common. It's actually, we think affects at bare minimum

So a lot of times people will get the million dollar work up, they'll go to the emergency room, they're seeing their gynecologists, get exams, ultrasounds, blood work, and everything comes back completely normal. So this is where a lot of people with symptoms of ENDO will be told, well, everything looks fine, there's nothing wrong with you. You just can't tolerate the pain.

That sort of thing.

So unfortunately, anybody who's listening who's had ENDO has probably had this experience. Female pain has been so normalized. Period pain has been normalized that a lot of times when people come to their doctor saying, I can't go to school, I can't go to work, I'm missing school, I'm taking a ton of ibuprofen, I tried this birth control, that

After surgery, Mick finally felt some relief, not just from the bladder pain and digestive issues, but also from the constant mental strain. For the first time in years, she experienced a break from the cycle that had consumed her for so long. What was that like for you to hear that now you have tangible reasons for the IBA, Yes, for the irregular cycle, for the UTIs the pain.

It was so overwhelming the week after.

I remember just staring at my surgery photos because I could actually see the proof that something was wrong and that I wasn't making it up in my head, and I.

Was like, whoa. It almost felt like magic.

What does your treatment look like today? Have you had any major flare ups or set back since you were properly diagnosed?

Yes, so I'm currently in a flare right now. I feel like after the surgery, I was in denial because I was pain free, that it wasn't a lifelong thing that I needed to keep up with. And so when my dad died, I was in overdrive. My nervous system was not and my stress levels were so out of control that I wasn't managing it properly and stress is one of my main triggers for bladder pain and reproductive pain,

Well, now you're living your life and you're incorporating this diagnosis into it as opposed to before it was properly diagnosed, ruling your life correct. So what has cultivating this online community meant to you?

It has brought me so much.

I have loved speaking with every single person that has DMed me and has asked for advice or me asking for advice, and to be able to have that resource is every But I hope that other people can say that when they come across my content too. I hope that they feel like a superpower walking into situations where they couldn't feel seen or couldn't feel heard.

That's all I can ask for.

Are there things that give you hope in terms of the future of treatment for demetriosis?

Yeah, And I do like to end always on a positive note because sometimes it's so bleak, it sounds so depressing, But there is a lot of hope and that a lot of that is because of people with nmatriosis who have spoken out, who have made these advocacy organizations and these support organizations. They have fought for funding. A lot of celebrities you mentioned, like Bendie Irwin, Olivia Colpo, Christy Tigue and so many celebrities have spoken about their experience

What are you most proud of about the way in which your sister's been navigating this diagnosis.

I think she, as everybody, has been through so much and she's just learned to rise above. Of course, she has her days where she's a little bit down and needs that little extra boost of self confidence, but I think her resiliency is really incredible and admirable.

What do you want people to take away from your story?

Your body loves you, even if it feels like it's breaking down all of the pain and all of the symptoms, confusing symptoms that really just don't make sense, really do

For more on endometriosis and menstreal health, visit the Endometriosis Foundation's website at indofound dot org. You can also follow Mixstory on Instagram and TikTok at Mickzason and learn more from doctor Tang at Karen Tang, MD.

My name is Mixxason and I struggled for ten years until I got my endometriosis diagnosis.

On next week's episode of Symptomatic, Samayra Ahmed's life takes a terrible turn as she goes from living it up in her mid twenty to nearly blind in a matter of days. I walked into a wall, collapsed in my office, lost vision in both of my eyes, and couldn't feel half of my body. The doctors discover rapidly spreading inflammation in her brain and scramble to find both the cause and to treatment to save what remains of her vision.