Speaker 1: I remember having my friends drive me to the er
Speaker 1: once and someone had to carry me into the er
Speaker 1: because I could not even move.
Speaker 2: The severity of the pain is not necessarily correlated with
Speaker 2: the type of disease or like the extent of the disease,
Speaker 2: so then people don't get the support that they need.
Speaker 3: They feel like.
Speaker 2: They're the only one going through it.
Speaker 4: She'd say, I cannot live with these symptoms all the time.
Speaker 4: I just want to live a quote unquote normal life.
Speaker 1: I was at a loss, like I'm looking down and
Speaker 1: I'm seeing red and no one's helping me.
Speaker 3: How terrifying would it be to fight an unknown enemy,
Speaker 3: one you didn't recognize and didn't see coming. What if
Speaker 3: that enemy was coming from within a disease that even
Speaker 3: doctors couldn't identify. Nearly half of all Americans suffer from
Speaker 3: some chronic illness, and many struggle for an accurate diagnosis.
Speaker 3: These are their stories and Lauren brete p Cheko and
Speaker 3: this is symptomatic. Mick naturally radiates energy, joy, and warmth
Speaker 3: with her lively, outdoorsy spirit. She makes everyone she meets
Speaker 3: feel like family. These qualities not only carried her through
Speaker 3: her toughest health challenges, but also help her make a
Speaker 3: real impact in the lives of others. For people who
Speaker 3: don't know you, tell me a little bit about yourself.
Speaker 3: How would you describe yourself.
Speaker 1: I feel like I'm a jack of all trades, but
Speaker 1: mainly I'm a social media creator. I started as a
Speaker 1: fitness coach on Instagram and YouTube, and then I shared
Speaker 1: my eating disorder recovery online, and then I started sharing
Speaker 1: my health issues.
Speaker 5: Online and gained a community from that.
Speaker 3: Well, when you're not doing social media, tell me some
Speaker 3: of your favorite things to relax, and I'm sure they
Speaker 3: may include your dog Blue.
Speaker 1: Oh, yes, they do well. Blue just got surgery. He
Speaker 1: got doggy acl surgery. But usually it would be taking
Speaker 1: him for hikes or like walks and stuff. And I'm
Speaker 1: a big rock collector, fossil collector. My family has a
Speaker 1: house in northern Michigan, and if anybody knows what a
Speaker 1: Potoski stone is, I'm always like polishing them in my
Speaker 1: backyard and showing my nieces and nephews all of the
Speaker 1: cool stuff that I find.
Speaker 3: For people who don't know, Mick, how would you describe
Speaker 3: for to people?
Speaker 4: Oh, gosh, there's six of us siblings, so Mikayla is
Speaker 4: the fifth.
Speaker 3: That's Christine mix older sister.
Speaker 4: She's more on the quiet side since there's so many
Speaker 4: of us, somebody's always trying to talk and over talk
Speaker 4: to each other. She's very thoughtful, she's a very genuine person.
Speaker 4: She's just a gem.
Speaker 5: She's really really special.
Speaker 3: Christine, a nurse practitioner, has always been mixed anchor. As
Speaker 3: an older sibling. She recalls mixed struggling with unusual health
Speaker 3: issues from an early age. Do you remember how early
Speaker 3: now looking back, the staff infection issue started.
Speaker 4: I mean, kids fall all the time, right like they're
Speaker 4: always getting abrasions, knees, palms of their hand. But I
Speaker 4: vividly remember her as a little toddler getting one and
Speaker 4: my parents were like what in the world, and a
Speaker 4: lot of antibiotics. I mean, she'd get poked by like
Speaker 4: a pine needle or something and it would turn into
Speaker 4: a staff infection.
Speaker 3: Health issues that seemed to evolve as Mit grew older.
Speaker 1: I started hitting puberty in elementary school way before a
Speaker 1: lot of people my age did, and my parents kind
Speaker 1: of freaked out and took me to a bunch of doctors.
Speaker 1: So I didn't find that out until probably a few
Speaker 1: years ago.
Speaker 3: That's interesting, And what did they chalk that up to
Speaker 3: the fact that you had so many female siblings that
Speaker 3: sometimes the hormones just sink.
Speaker 1: I don't think they gave my parents any answers, if
Speaker 1: I remember correctly. I think they just chalked it up
Speaker 1: to me hitting puberty early.
Speaker 3: Little signs of mixed health issues appeared early on, but
Speaker 3: it wasn't until she started to menstrate that suspicions began
Speaker 3: to rise.
Speaker 1: I remember my first period was between three weeks and
Speaker 1: five weeks long. I can't remember exactly because I was
Speaker 1: so young, but I asked my mom, and I asked
Speaker 1: my siblings. I was like, is this normal? And they
Speaker 1: were like, yeah, sometimes it happens. My mom had heavy
Speaker 1: periods and she was like, I'm fine. And unfortunately, we've
Speaker 1: been taught that a lot of things are normal that
Speaker 1: aren't at all.
Speaker 3: And so was that difficult now looking back going through
Speaker 3: that at such an early age.
Speaker 1: Yes, because when I hit puberty in elementary school, I
Speaker 1: dealt with a lot of acne and struggles with acne
Speaker 1: very young, and I remember like carrying a pot concealer
Speaker 1: around with me in literal elementary school because I was
Speaker 1: so worried about what people would say, and I even
Speaker 1: wore like swim shirts around whenever I would go to
Speaker 1: the pool because I had acne all over my back
Speaker 1: and chest and arms.
Speaker 3: I hadn't even thought about, of course, the hormonal aspect,
Speaker 3: and if your body's being flooded with that early, you're
Speaker 3: going to manifest what most kids are going to navigate
Speaker 3: in junior high in high school in terms of acne. Yeah,
Speaker 3: that must have been a lot.
Speaker 5: It was, for sure.
Speaker 4: She was on medications for the acne, and again she
Speaker 4: was young. You don't go searching for other problems at
Speaker 4: that time because the majority of your peers are also
Speaker 4: going through that. Hers was just taken to the next level.
Speaker 3: And so the symptoms persisted. Now in high school and
Speaker 3: a standout on the soccer team, mixed minstrel cycle began
Speaker 3: to disrupt her everyday life.
Speaker 1: I remember being in the middle of a game and
Speaker 1: having to run off the field to change my super
Speaker 1: plus tampon. Like I had to change these tampons at
Speaker 1: least three times an hour.
Speaker 5: It was so heavy.
Speaker 4: She is an incredible athlete. She had to retire from
Speaker 4: her soccer career pretty early. Earlier than she wanted, because
Speaker 4: she blew her knee out several times and had some
Speaker 4: major surgeries on the knee and then ended up getting concussions.
Speaker 3: So now, on top of the symptoms piling up, your
Speaker 3: body must have been sent through a spiral going from
Speaker 3: all that time playing soccer to now not having it
Speaker 3: at all.
Speaker 1: I was really confused because I was so athletic, and
Speaker 1: then all of a sudden, I didn't even know how
Speaker 1: to work out, and I didn't know how to do anything.
Speaker 1: I didn't know how to eat, I couldn't really socialize.
Speaker 1: It was hard for me to put myself out there
Speaker 1: because all of my friends and my whole entire life
Speaker 1: surrounded soccer, and so I essentially had to step into
Speaker 1: this very unfamiliar life that I did not know how
Speaker 1: to live at all.
Speaker 3: Over time, Mick started to feel lost in her own body,
Speaker 3: turning to fad diets and facing the pressures that often
Speaker 3: accompany them.
Speaker 1: My parents thought it would be good for me to
Speaker 1: dive head into something that would take discipline, because I
Speaker 1: was an athlete, like I loved having something to put
Speaker 1: my energy into and to see progress in. And that's
Speaker 1: exactly what I did, except it took.
Speaker 5: A very wrong turn.
Speaker 1: I was turning seventeen at the time, and I was
Speaker 1: following a diet that was having me eat less than
Speaker 1: a toddler should be eating.
Speaker 3: Mick was developing an eating disorder that would soon consume
Speaker 3: her life, adding to the stress from the mysterious undiagnosed
Speaker 3: illness that continued to linger in the background. How did
Speaker 3: your symptoms then progress to the point where you realized
Speaker 3: that you needed to seek medical opinion.
Speaker 1: Well, my acne got exponentially worse, and I also started
Speaker 1: getting UTIs right after my big life shift. I also
Speaker 1: remember getting a happy trail on my lower stomach and
Speaker 1: getting some hairs on my chest, in my chin and
Speaker 1: in the mustache area, and my sisters also dealt with
Speaker 1: that to some extent.
Speaker 5: So I was like, Okay, Like, I guess I'm just
Speaker 5: going to keep going.
Speaker 3: That is just the genetic Yeah, you know card you
Speaker 3: were dealt.
Speaker 1: Yeah, And so I kind of lived in that cycle
Speaker 1: for a fairly long time, being on antibiotics for acne,
Speaker 1: trying different birth controls because I was starting to get
Speaker 1: sexually active, so I was actually suppressing my period around
Speaker 1: that time as well, and I was shaving all of
Speaker 1: the hair that wasn't normal for a girl to have
Speaker 1: in you know, social society standards.
Speaker 3: How did your UTIs progress to the point where they
Speaker 3: became emergency situation?
Speaker 1: Honestly, they were always emergency situations. It hit me so badly.
Speaker 5: I would be.
Speaker 1: Fine one minute and then I wouldn't be able to
Speaker 1: walk the next. So I actually went to the emergency
Speaker 1: room quite a bit. I remember I was sitting in
Speaker 1: my bedroom at my house and I was watching TV,
Speaker 1: and it hit me so fast, and I told my
Speaker 1: parents and they were like, oh, yeah, like it'll go
Speaker 1: away on its own, you know, like Grandberry juice. Yes,
Speaker 1: this stuff happens all the time. And so I after
Speaker 1: about an hour. My first emergency room visit was me
Speaker 1: driving myself there.
Speaker 4: So then she just kind of ignores it because she's
Speaker 4: just like, well, this has to be my norm. I
Speaker 4: guess I'm just going to live with bladder pain and
Speaker 4: puts it off, puts it off, and then it just
Speaker 4: gets worse, and that's when she has to go to
Speaker 4: the emergency room because she's like, well, this is terrible,
Speaker 4: so painful.
Speaker 1: That's why they immediately gave me antibiotics every single time,
Speaker 1: without even doing a culture test because my symptoms were
Speaker 1: so severe, I was either urinating blood or like I
Speaker 1: was screaming in pain.
Speaker 3: It was so painful for somebody who can't understand or
Speaker 3: hasn't experienced. Can you just explain in as much detail
Speaker 3: as possible what that pain felt like?
Speaker 5: Oh?
Speaker 1: How do I explain the most excruciating pain? I mean,
Speaker 1: you can't think. You can't walk. It feels like knives
Speaker 1: are coming out of you. When you're peeing. It feels
Speaker 1: like you have nothing else to pee, but you have to,
Speaker 1: and your body needs to. And your body is so swollen.
Speaker 1: Your lower abdomen is so swollen it feels like stabs.
Speaker 5: It really does.
Speaker 3: By now, Nick is twenty and four years into a
Speaker 3: more search for answers, finding herself in and out of
Speaker 3: the er as her symptoms continuously flared. She started seeing specialists,
Speaker 3: hoping for the relief she needed, but no one could
Speaker 3: seem to uncover the real root of the problem.
Speaker 1: And by that time, my bladder issues started to get
Speaker 1: exponentially worse.
Speaker 5: I was unable to walk.
Speaker 1: I remember having my friends drive me to the er
Speaker 1: once and someone had to carry me into the er
Speaker 1: because I could not even move.
Speaker 3: What are you being told it could.
Speaker 1: Be PCOS and inner social cystitis.
Speaker 3: Okay, so polycystic ovarian syndrome, And what are you being
Speaker 3: told to do?
Speaker 1: Girth control and elimination, diet and bladder medication.
Speaker 3: But I just find something heartbreaking, Mick about the fact
Speaker 3: that when you went to your gynecologist to on contraceptives,
Speaker 3: you didn't talk about the hair and the cycle issues,
Speaker 3: and then you go to an intercrinologist and you're not
Speaker 3: talking about the gynecological issues.
Speaker 1: I think a lot of it has to do with
Speaker 1: being self conscious and overwhelmed, because at this time I
Speaker 1: was starting to gain my independence. I was in college
Speaker 1: and I was going to these appointments alone. I remember
Speaker 1: being so nervous, to the point where I would leave
Speaker 1: appointments and kind of forget something. But then I would
Speaker 1: be like, oh, you know, like it's fine, it doesn't matter.
Speaker 3: So you know that something's wrong, you just don't know
Speaker 3: how to advocate or articulate your issues.
Speaker 1: Yes, it kind of just felt like I was in
Speaker 1: and out of those doctor's appointments. But after every doctor appointment,
Speaker 1: I would kind of leave with some sort of confidence
Speaker 1: that like, it wasn't as bad as I thought it was.
Speaker 3: With possible PCOS and interstitial cystiitis diagnosis already on the table,
Speaker 3: Mick visits a gastro entrologist who notes her bladder frequency
Speaker 3: and pain, ultimately diagnosing her with IBS, a label often
Speaker 3: given when no other clear cause for a GI issue
Speaker 3: was found. Meanwhile, as her symptoms piled up and she
Speaker 3: transitioned into college life away from home, Mick began sharing
Speaker 3: her fitness and diet routines online, quickly gaining a following
Speaker 3: and praise for her physical appearance. What her followers didn't
Speaker 3: know was that she was also in the grip of
Speaker 3: an eating disorder, and their comments only fueled that struggle.
Speaker 3: And so you're navigating things that are affirming your negative
Speaker 3: sense of self.
Speaker 1: Yes, And that was when social media had just started
Speaker 1: to blow up, So it was literally the perfect storm
Speaker 1: for everything wrong to happen. I started posting online and
Speaker 1: gaining positive feedback, and on the inside I felt so
Speaker 1: lost and confused, and all I could do was follow
Speaker 1: the positive feedback that I was getting.
Speaker 3: I mean, you're going through all of this at such
Speaker 3: a young age. You said that just managing your UTIs
Speaker 3: alone felt like a full time job. You must have
Speaker 3: been so psychologically not just exhausted, but detached from yourself.
Speaker 5: Yes.
Speaker 1: And I was so focused on trying to make myself
Speaker 1: smaller that I wasn't focused on the pain of my body.
Speaker 1: I wasn't focusing on my digestion. I was focusing on
Speaker 1: limiting my calories, going to the gym for hours a day,
Speaker 1: twice a day.
Speaker 5: But at this point in time.
Speaker 1: I also noticed my body swelling to an amount that was.
Speaker 3: Not normal in what way and how.
Speaker 1: So this is interesting because at the time I was
Speaker 1: dealing with binge eating disorder. So in high school, when
Speaker 1: all of these things started happening, I had orthorexia and
Speaker 1: then it kind of went into bolimia and then binge
Speaker 1: eating disorder.
Speaker 3: Okay, so you have a triple threat in terms of
Speaker 3: eating disorders. Yeah, and I just want to break it down.
Speaker 3: So orthorexia, for people who aren't familiar, it's when you
Speaker 3: become almost not just addicted, but imprisoned by clean eating
Speaker 3: and you cannot deviate outside of that without In your case,
Speaker 3: it triggered bolimia.
Speaker 1: Yeah, and then I thought I could just cure that
Speaker 1: without going to see somebody, And I was like, Okay,
Speaker 1: I'm just going to stop purging, and that led to
Speaker 1: binge eating disorder, and so I chalked the swelling up
Speaker 1: to binge eating.
Speaker 3: Feeling consumed by her eating disorder, Nick stepped away from
Speaker 3: college and entered an outpatient recovery program, pushing her other
Speaker 3: symptoms aside. But once in recovery, she was finally able
Speaker 3: to address the underlying issues that had been affecting her
Speaker 3: since childhood.
Speaker 4: She was in recovery from her eating disorders, and then
Speaker 4: she started to realize that, oh, I'm having worsening cramps.
Speaker 4: Then her PMS symptoms really escalated.
Speaker 3: Tell me about the team and they start pointing things out.
Speaker 1: Yeah. I was mainly my dietitian who started to point
Speaker 1: things out because she noticed my inflammation was way worse
Speaker 1: than what she was expecting. So she had brought that up,
Speaker 1: and the symptoms just kept getting worse. In what way,
Speaker 1: I was urinating blood frequently, My lower stomach would cramp
Speaker 1: a lot, and the frequency of urination was around six
Speaker 1: to eight times per hour at its worst.
Speaker 3: This is when Nick began opening up to her family
Speaker 3: about what she was really going through, struggling to cope
Speaker 3: with the relentless nature of her evolving condition. With her
Speaker 3: eating disorder finally under some control, the real impact of
Speaker 3: her other symptoms started coming into sharp and alarming focus, her.
Speaker 4: Telling me I cannot live with these symptoms all the time.
Speaker 4: This can't be my new normal. Just seeing her so frustrated,
Speaker 4: she'd say, these are debilitating. I just want to live
Speaker 4: a quote unquote normal life. It was just the constant
Speaker 4: calls that she would give me. I was like, Okay,
Speaker 4: we need to sit down and have some real conversations.
Speaker 1: That is when my fitness Instagram started to blow up too.
Speaker 1: So I was gaining weight while I was dieting, and
Speaker 1: so I was photoshopping my photos. I was trying to
Speaker 1: portray this perfect lifestyle that obviously wasn't a reflection of
Speaker 1: what was going on in my actual life. And that's
Speaker 1: when I decided to move home for recovery.
Speaker 5: It was the lowest of lows. I wouldn't wish that
Speaker 5: on anybody.
Speaker 3: We'll be right back with Symptomatic, a Medical Mystery Podcast.
Speaker 3: Now back to Symptomatic a Medical Mystery Podcast. Mixed symptoms
Speaker 3: started in her teens, with acne and early periods escalating
Speaker 3: into constant UTIs, bladder pain and even bloody urination. Unsure
Speaker 3: of how to advocate for herself, each symptom was treated separately,
Speaker 3: never seeing the bigger picture. Though she gained some clarity
Speaker 3: through her eating disorder recovery, the struggle wasn't over. She
Speaker 3: was still making frequent trips to the er, but when
Speaker 3: the pain became too much to bear, Mick was more
Speaker 3: determined than ever to find answers. So what was happening
Speaker 3: with you mentally emotionally at this point?
Speaker 1: Emotionally, I mean no one would help me, Like at
Speaker 1: the emergency rooms. I was also getting handed drug addiction
Speaker 1: pamphlets because I was going so often, and I was
Speaker 1: at a loss, like, am I really just making this up?
Speaker 1: I'm looking down in the toilet and I'm seeing red,
Speaker 1: and all of my blood tests are perfectly fine, all
Speaker 1: my CT scans are perfectly fine. I remember one er
Speaker 1: doctor also said like, hmmm, are you constipated? It looks
Speaker 1: like there's a bit of stool build up in there,
Speaker 1: and I was like, I'm constipated all the time.
Speaker 3: And that's when your sister Christine stepped in. How did
Speaker 3: her expertise as a nurse end up coming into play?
Speaker 1: So I called her bawling my eyes out, and I
Speaker 1: think she was an er nurse at the time, and
Speaker 1: I was like, Christy, I am at my breaking point
Speaker 1: right now. I'm in so much pain. I cannot live
Speaker 1: like this. Is there anyone that you can recommend me
Speaker 1: to because I need to see someone fast. I need
Speaker 1: to see someone that will actually treat me and look
Speaker 1: at my issues. And she got me set up with
Speaker 1: another urologist.
Speaker 4: I just want her to note that she's not alone
Speaker 4: through this. I mean, she's physically going through the symptoms,
Speaker 4: but she's not alone. And I think that's really important
Speaker 4: for people with chronic illness to remember that they have
Speaker 4: that support system or to find that support system, because
Speaker 4: you can certainly get in your head.
Speaker 1: She was going to every doctor's appointment with me at
Speaker 1: that point because I was scared that I was going
Speaker 1: to miss something, and she was like, I don't want
Speaker 1: to miss anything. I want to help you move through
Speaker 1: this because you shouldn't be alone. And I can't explain
Speaker 1: how helpful it was, regardless of her nurse practitioning degree,
Speaker 1: just having someone there that I could speak to because
Speaker 1: I was getting thrown medical terms left and right, and
Speaker 1: she was able to actually understand them. When I didn't,
Speaker 1: or if I wasn't able to ask what that was,
Speaker 1: she was able to explain it to me afterwards.
Speaker 4: She would always tell me something is wrong, and I
Speaker 4: think you have to really trust your gut, and she
Speaker 4: was really trusting her gut, like this cannot be just
Speaker 4: a UTI or just a IBS symptom. And I always
Speaker 4: tell her, I say, Mick, you have to be an
Speaker 4: advocate for yourself with your health. Providers know you as
Speaker 4: the next patient. They don't know what you've been through
Speaker 4: with your whole staff infections. UTIs whatever. You have to
Speaker 4: tell the provider all that information for them to take
Speaker 4: everything into consideration.
Speaker 3: Finally hearing her full story, the urologists thought he might
Speaker 3: know what was wrong and started with a sistoscopy, essentially
Speaker 3: putting a camera into mixed bladder to get a clearer view.
Speaker 3: But even with this high tech test, nothing unusual showed up,
Speaker 3: leaving Mick feeling discouraged once again. Some medications offered temporary relief,
Speaker 3: but nothing lasted. You were actually diligently pursuing answers to
Speaker 3: something that has been going on for five six years
Speaker 3: at this point, and one set of doctors in the
Speaker 3: er telling you we can't help you. Go elsewhere, and
Speaker 3: now an expert is telling you not finding anything. Where
Speaker 3: do you go from there?
Speaker 1: Birth control, bladder medication, and elimination.
Speaker 3: Diet, eliminate what at this point I know?
Speaker 1: So I stopped drinking anything but water, no acidic fruits.
Speaker 1: I was scared to eat any fruit except for bananas,
Speaker 1: any spicy foods. They tried to make me stop eating
Speaker 1: gluten and dairy, but I was not in the mental
Speaker 1: state to do that yet with my recovery, and so
Speaker 1: I was basically eating bland food and water every single day.
Speaker 1: I avoided everything because I was so scared. I was terrified.
Speaker 3: You're feeling probably at your worst, and what kind of
Speaker 3: response are you getting.
Speaker 1: I was at the height of my social media career
Speaker 1: and I was slowly deteriorating. I hadn't really opened up
Speaker 1: at all at that point online, but I just had
Speaker 1: all of these business opportunities coming at me left and right,
Speaker 1: and a lot of them I couldn't say no to
Speaker 1: because I was growing my own business.
Speaker 3: Okay, in two to three years, you just powered on
Speaker 3: because from the outside world everything looked great. So what
Speaker 3: is the turning point?
Speaker 1: Began sharing a smidge about what I was going through
Speaker 1: to my Instagram. I don't know if there was an
Speaker 1: exact moment, but my doctor's appointments became so frequent that
Speaker 1: it was a second job, you know. People started dming
Speaker 1: me things like, oh, yeah, I have frequent UTIs and like,
Speaker 1: I have inters social cistiitis, And it started conversations that
Speaker 1: were really really important for me.
Speaker 3: That's amazing. So once you finally kind of let down
Speaker 3: a little bit of your guard, you had a very
Speaker 3: authentic exchange from people who had weathered similar experiences. And
Speaker 3: then you come across Bendy Erwin's story.
Speaker 1: Yeah, one of those conversations ended with someone sending me
Speaker 1: a link to Bendy Irwin's YouTube video.
Speaker 3: Bendy Irwin follows in the footsteps of her famous father,
Speaker 3: Steve Irwin, as a conservationist and zoo keeper. She has
Speaker 3: also been very open about her own health struggles.
Speaker 1: It was ten minutes long, and all they said was,
Speaker 1: I think you need to watch this. Maybe it will
Speaker 1: give you some answers, and I hope it does. And
Speaker 1: I was laying in bed. I watched the full thing
Speaker 1: and my jaw was on the floor. I remember feeling
Speaker 1: so overwhelmed with emotion to the point where like I
Speaker 1: might cry here because I was like, I've never heard
Speaker 1: anybody go through what I had gone through, and it
Speaker 1: was so emotionally overwhelming for me.
Speaker 3: Some of her followers sent Mick additional resources and recommended doctors,
Speaker 3: one being doctor Shivacomini som Asunderum more fondly known as
Speaker 3: Doctor Minnie. Mick came to the appointment fully prepared with
Speaker 3: a journal tracking her pain symptom cycle, and even a
Speaker 3: body map pinpointing exactly where she felt the pain. When
Speaker 3: she arrived, she was greeted by Doctor Minnie's nurse practitioner.
Speaker 1: The nurse practitioner basically gave me an option to do
Speaker 1: birth control, to keep as is and for us to
Speaker 1: manage symptoms, or to do excision surgery laparoscopic surgery. And
Speaker 1: she told me very point blank that based on my symptoms,
Speaker 1: if we were to do excision surgery with Doctor Minnie,
Speaker 1: she would find something.
Speaker 3: What did she represent to you at that point my life?
Speaker 1: Like she was able to give me hope that I
Speaker 1: could have my life back. I was twenty seven years
Speaker 1: old and in the worst pain that I never imagined
Speaker 1: being impossible for so long, and she looked at me
Speaker 1: and she just said, I'm going to help you, and
Speaker 1: we are going to do everything that we can to
Speaker 1: get you through this, because you deserve to be pain free.
Speaker 1: And I had never heard that before.
Speaker 3: Clinging to that glimmer of hope, Mixed scheduled her surgery
Speaker 3: right away. After nearly a decade of pain and endless
Speaker 3: searching for answers, she finally had a shot at relief.
Speaker 1: I woke up from the surgery and I was loopy,
Speaker 1: and I didn't see doctor Minnie, but I asked the
Speaker 1: person there monitoring me if they found anything, and they
Speaker 1: said yes. I remember saying over and over again, I'm
Speaker 1: not crazy. I'm not crazy. I'm not crazy. I'm not crazy.
Speaker 1: And after a couple hours, I was in a room
Speaker 1: where I got to see my boyfriend, where he was
Speaker 1: able to tell me that I had stage two endometriosis.
Speaker 1: And then doctor Minnie came in and said that they
Speaker 1: excised a lesion of endometriosis and substantial scar tissue.
Speaker 4: It's very validating to go so many months, weeks, years
Speaker 4: just saying, oh, this is just PMS, this is just IBS.
Speaker 4: To finally get that. It's like a huge weightlifted off
Speaker 4: your shoulders. In that moment, I think there was just
Speaker 4: a huge sense of relief, almost like we could have
Speaker 4: had a party.
Speaker 3: This moment of validation was a major breakthrough for Mick.
Speaker 3: But knowing the cause didn't mean the road to recovery
Speaker 3: would be easy. So in Layman's terms, how would you
Speaker 3: define endometriosis?
Speaker 2: What I tell people it's what comes out like period blood.
Speaker 2: That tissue is called enemetrium. Enemetriosis is where something that
Speaker 2: looks like that tissue grows outside.
Speaker 5: Of the uterus.
Speaker 3: That's doctor Karen Tang, a gynecologist and author of It's
Speaker 3: Not Hysteria Everything you need to know about your reproductive health,
Speaker 3: but we're never told.
Speaker 2: And the main symptom that it causes is really severe pain,
Speaker 2: mostly pain with periods, pain with sex. And also it
Speaker 2: can cause lots of inflammation of the pelvis, including all
Speaker 2: the organs that are nearby the rectum, the bowels, the bladder,
Speaker 2: the muscles, the nerves, and that inflammation then causes all
Speaker 2: sorts of other symptoms like really severe constipation, diarrhea, pain
Speaker 2: with bowel movements, bladder urgency, pain with exercise or standing,
Speaker 2: so it basically affects pretty much everything in the pelvis
Speaker 2: at some point as it gets worse, it can also
Speaker 2: cause scarring of the Filippian tubes and that can lead
Speaker 2: to fertility issues. So it really impacts many different aspects
Speaker 2: of someone's life.
Speaker 3: How do you handle the psychological component of that as
Speaker 3: someone who is treating somebody who has not felt seen
Speaker 3: or heard and is dealing with this very overwhelming condition.
Speaker 2: So many people have gotten to the point where they're
Speaker 2: suffering from severe depression or anxiety and stress because of
Speaker 2: what they've been through. Because depression, anxiety actually worse and pain.
Speaker 2: By the way, it also worsen balfunctions. So it's sort
Speaker 2: of a nasty cycle, like you kind of have horrible
Speaker 2: mood symptoms because you're suffering so much, and the more
Speaker 2: mood symptoms you have, the worse you feel.
Speaker 3: It's so fascinating because I remember a period in time
Speaker 3: where endometriosis was almost considered a made up condition, that
Speaker 3: it was a one size fits all for any complaint
Speaker 3: that women seem to have. What are some of the
Speaker 3: most prevalent misconceptions that still abound.
Speaker 2: So enemy triosis is very common it's actually we think
Speaker 2: affects at bare minimum ten percent of women people assigned
Speaker 2: FIELD at birth. But the problem is it can only
Speaker 2: be definitively diagnosed surgically, meaning that it doesn't often show
Speaker 2: up on imaging studies. So a lot of times people
Speaker 2: will get the million dollar work up, they'll go to
Speaker 2: the emergency room, they're seeing their gynecologists, get exams, ultrasounds,
Speaker 2: blood work, and everything comes back completely normal. So this
Speaker 2: is where a lot of people with symptoms of ENDO
Speaker 2: will be told, well, everything looks fine, there's nothing wrong
Speaker 2: with you.
Speaker 3: You just can't tolerate the pain. That sort of thing.
Speaker 2: So unfortunately, anybody who's listening who's had ENDO has probably
Speaker 2: had this experience. Female pain has been so normalized. Period
Speaker 2: pain has been normalized that a lot of times when
Speaker 2: people come to their doctor saying, I can't go to school,
Speaker 2: I can't go to work, I'm missing school, I'm taking
Speaker 2: a ton of ibuprofen, I tried this birth control, that
Speaker 2: birth control, nothing's really helping that it's somehow is sort
Speaker 2: of reflective of their tolerance for pain, or maybe they're
Speaker 2: a hypochondriac, rather than that, maybe there's something going on
Speaker 2: that there's a medical condition that's causing it.
Speaker 3: After surgery, Mick finally felt some relief, not just from
Speaker 3: the bladder pain and digestive issues, but also from the
Speaker 3: constant mental strain. For the first time in years, she
Speaker 3: experienced a break from the cycle that had consumed her
Speaker 3: for so long. What was that like for you to
Speaker 3: hear that now you have tangible reasons for the IBA, Yes,
Speaker 3: for the irregular cycle, for the UTIs the pain.
Speaker 5: It was so overwhelming the week after.
Speaker 1: I remember just staring at my surgery photos because I
Speaker 1: could actually see the proof that something was wrong and
Speaker 1: that I wasn't making it up in my head, and
Speaker 1: I was like, whoa.
Speaker 5: It almost felt like magic.
Speaker 3: What does your treatment look like today? Have you had
Speaker 3: any major flare ups or set back since you were
Speaker 3: properly diagnosed?
Speaker 1: Yes, so I'm currently in a flare right now. I
Speaker 1: feel like after the surgery, I was in denial because
Speaker 1: I was pain free, that it wasn't a lifelong thing
Speaker 1: that I needed to keep up with. And so when
Speaker 1: my dad died, I was in overdrive. My nervous system
Speaker 1: was not related, and my stress levels were so out
Speaker 1: of control that I wasn't managing it properly, and stress
Speaker 1: is one of my main triggers for bladder pain and
Speaker 1: reproductive pain, and I'm currently trying to fight through that.
Speaker 1: But I just had an appointment with doctor Minnie and
Speaker 1: again she's like, we're going to get this taken care of.
Speaker 3: Well, now you're living your life and you're incorporating this
Speaker 3: diagnosis into it as opposed to before it was properly diagnosed,
Speaker 3: ruling your life correct. So what has cultivating this online
Speaker 3: community meant to you?
Speaker 1: It has brought me so much. I have loved speaking
Speaker 1: with every single person that has DMed me and has
Speaker 1: asked for advice or me asking for advice, and to
Speaker 1: be able to have that resource is every But I
Speaker 1: hope that other people can say that when they come
Speaker 1: across my content too. I hope that they feel like
Speaker 1: a superpower walking into situations where they couldn't feel seen
Speaker 1: or couldn't feel heard. That's all I can ask for.
Speaker 3: Are there things that give you hope in terms of
Speaker 3: the future of treatment for demetriosis?
Speaker 2: Yeah, And I do like to end always on a
Speaker 2: positive note because sometimes it's so bleak, it sounds so depressing,
Speaker 2: but there is a lot of hope and that a
Speaker 2: lot of that is because of people with nmtriosis who
Speaker 2: have spoken out, who have made these advocacy organizations and
Speaker 2: these support organizations, they have fought for funding. A lot
Speaker 2: of celebrities you mentioned, like Bendy Irwin, Olivia Culpo, Christy
Speaker 2: Tigue and so many celebrities have spoken about their experience
Speaker 2: with endometriosis. And there are some of these places like
Speaker 2: ct endo Rise in Connecticut and MIT that are actually
Speaker 2: really trying to do good work and trying to find
Speaker 2: some of these answers. So I am very optimistic. I
Speaker 2: think that things even within the last couple of years
Speaker 2: compared to when I finished my training in twenty ten,
Speaker 2: was very different, and so much now is looking more hopeful.
Speaker 3: What are you most proud of about the way in
Speaker 3: which your sister's been navigating this diagnosis.
Speaker 4: I think she, as everybody, has been through so much
Speaker 4: and she's just learned to rise above. Of course, she
Speaker 4: has her days where she's a little bit down and
Speaker 4: needs that little extra boost of self confidence, but I
Speaker 4: think her resiliency is really incredible and admirable.
Speaker 3: What do you want people to take away from your story?
Speaker 1: Your body loves you, even if it feels like it's
Speaker 1: breaking down. All of the pain and all of the symptoms,
Speaker 1: confusing symptoms that really just don't make sense, really do
Speaker 1: actually make sense.
Speaker 5: And if you use that as.
Speaker 1: Strength to take with you throughout this life, whether it
Speaker 1: be like a lesson that you learned from your diagnosis
Speaker 1: or the diagnosis process, I hope that you know that
Speaker 1: your body makes sense, and your story makes sense, and
Speaker 1: what you are going through makes complete sense when it
Speaker 1: feels like it doesn't.
Speaker 3: For more on endometriosis and menstrual health, visit the Endometriosis
Speaker 3: Foundation's website at indofound dot org. You can also follow
Speaker 3: Mixed Story on Instagram and TikTok at Mickzason and learn
Speaker 3: more from doctor Tang at Karen Tang, MD.
Speaker 1: My name is Mixxason and I struggled for ten years
Speaker 1: until I got my endemetriosis diagnosis.
Speaker 3: On next week's episode of Symptomatic, Samayra Ahmed's life takes
Speaker 3: a terrible turn as she goes from living it up
Speaker 3: in her mid twenty to nearly blind in a matter
Speaker 3: of days. I walked into a wall, collapsed in my office,
Speaker 3: lost vision in both of my eyes, and couldn't feel
Speaker 3: half of my body. The doctors discover rapidly spreading inflammation
Speaker 3: in her brain and scramble to find both the cause
Speaker 3: and to treatment to save what remains of her vision.
Speaker 3: As always, we would love to hear from you. Send
Speaker 3: us your thoughts on this episode, or share a medical
Speaker 3: mystery of your own at Symptomatic at iHeartMedia dot com,
Speaker 3: and please rate and review Symptomatic wherever you get your podcasts.
Speaker 3: We'll see you next time. Until then, be well. Symptomatic
Speaker 3: is a production of Ruby Studio from iHeartMedia. Our show
Speaker 3: is hosted by me Lauren Bret Pacheco. Executive producers are
Speaker 3: Matt Romano and myself. Our EP of Post Production is
Speaker 3: James Foster. Our Supervising producer is Cierra Kaiser. Our writers
Speaker 3: are John Irwin and I Diana Davis, and our editor
Speaker 3: is Cierra Spreen.