November 26, 2024 • 40 mins
Mik’s health challenges began at an early age, with unusual symptoms like recurring staph infections from small cuts—signs that both doctors and her family brushed aside. Later, she experienced rapid early-onset puberty, facing changes far earlier than most kids. But as these symptoms intensified, her parents soon realized this was something far more serious.
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Speaker 1 (00:09):
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.
Speaker 2 (00:18):
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.
Speaker 3 (00:30):
She'd say, I cannot live with these symptoms all the time.
I just want to live a quote unquote normal life.
Speaker 1 (00:38):
I was at a loss, like I'm looking down and
I'm seeing red and no one's helping me.
Speaker 4 (00:53):
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.
(01:17):
These are their stories and Lauren bred Pacheco and this
is symptomatic. Nick naturally radiates energy, joy, and warmth with
(01:42):
her lively, outdoorsy spirit. She makes everyone she meets feel
like family. These qualities not only carried her through her
toughest health challenges, but also help her make a real
impact in the lives of others. For people who don't
know you, tell me a little bit about yourself. How
would you describe yourself.
Speaker 1 (02:01):
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.
Speaker 5 (02:18):
Online and gained a community from that.
Speaker 4 (02:22):
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.
Speaker 1 (02:29):
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.
Speaker 5 (02:38):
And I'm a.
Speaker 1 (02:40):
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.
Speaker 4 (02:56):
For people who don't know, Mick, how would you describe
to people.
Speaker 3 (03:01):
Oh, gosh, there's six of us siblings, So Mikayla is
the fifth.
Speaker 4 (03:08):
That's Christine, mix older sister.
Speaker 3 (03:11):
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.
Speaker 5 (03:23):
She's really really special.
Speaker 4 (03:25):
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.
Speaker 3 (03:40):
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.
Speaker 4 (04:01):
Health issues that seemed to evolve as Mick grew older.
Speaker 1 (04:05):
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.
Speaker 4 (04:22):
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.
Speaker 1 (04:29):
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.
Speaker 4 (04:39):
Little signs of mixed health issues appeared early on, but
it wasn't until she started to menstruate that suspicions began
to rise.
Speaker 1 (04:48):
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.
Speaker 5 (04:59):
I was like, is this normal?
Speaker 1 (05:00):
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.
Speaker 4 (05:13):
And so was that difficult now looking back going through
that at such an early age.
Speaker 1 (05:19):
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
(05:41):
wore like swim shirts around whenever I would go to
the pool because I had acne all over my back
and chest and arms.
Speaker 4 (05:48):
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.
Speaker 5 (06:03):
It was, for sure.
Speaker 3 (06:05):
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.
Speaker 4 (06:21):
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.
Speaker 1 (06:31):
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.
Speaker 3 (06:45):
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.
Speaker 4 (07:01):
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.
Speaker 1 (07:13):
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
(07:38):
this very unfamiliar life that I did not know how
to live at all.
Speaker 4 (07:45):
Over time, Mick started to feel lost in her own body,
turning to fad diets and facing the pressures that often
accompany them.
Speaker 1 (07:54):
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.
Speaker 5 (08:16):
A very wrong turn.
Speaker 1 (08:18):
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.
Speaker 4 (08:29):
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.
Speaker 1 (08:50):
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
(09:11):
in the mustache area, and my sisters also dealt with
that to some extent.
Speaker 5 (09:17):
So I was like, Okay, Like I guess I'm just
going to keep going.
Speaker 4 (09:20):
That is just the genetic Yeah, you know card you
were dealt.
Speaker 1 (09:25):
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
(09:46):
the hair that wasn't normal for a girl to have
in you know, social society standards.
Speaker 4 (09:54):
How did your UTIs progress to the point where they
became emergency situation?
Speaker 1 (10:01):
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
(10:21):
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
about an hour. My first emergency room visit was me
driving myself there.
Speaker 3 (10:42):
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.
Speaker 1 (10:56):
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.
Speaker 5 (11:11):
It was so painful.
Speaker 4 (11:13):
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?
Speaker 5 (11:24):
Oh?
Speaker 1 (11:25):
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.
(11:47):
Your lower abdomen is so swollen it feels like stabs.
Speaker 5 (11:52):
It really does.
Speaker 4 (11:56):
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.
Speaker 1 (12:15):
And by that time, my bladder issues started to get
exponentially worse.
Speaker 5 (12:23):
I was unable to walk.
Speaker 1 (12:24):
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.
Speaker 4 (12:33):
What are you being told it could.
Speaker 1 (12:35):
Be PCOS and inner social cystitis.
Speaker 4 (12:39):
Okay, so polycystic ovarian syndrome, and what are you being
told to do?
Speaker 1 (12:47):
Birth control and elimination, diet and bladder medication.
Speaker 4 (12:53):
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.
Speaker 1 (13:17):
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
(13:37):
be like, oh, you know, like it's fine, it doesn't matter.
Speaker 4 (13:40):
So you know that something's wrong, you just don't know
how to advocate or articulate your issues.
Speaker 1 (13:46):
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.
Speaker 3 (13:59):
It was.
Speaker 4 (14:02):
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
(14:25):
life away from home, Mick began sharing her fitness and
diet routines online, quickly gaining a following and praise for
her physical appearance. What her followers didn't know was that
she was also in the grip of an eating disorder,
and their comments only fueled that struggle. And so you're
navigating things that are affirming your negative sense of self.
Speaker 1 (14:50):
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
(15:14):
the positive feedback that I was getting.
Speaker 4 (15:17):
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.
Speaker 5 (15:37):
Yes.
Speaker 1 (15:38):
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.
Speaker 5 (15:57):
For hours a day, twice a day.
Speaker 1 (16:00):
But at this point in time, I also noticed my
body swelling to an amount that.
Speaker 4 (16:09):
Was not normal in what way and how So this.
Speaker 1 (16:14):
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.
Speaker 4 (16:27):
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,
(16:49):
it triggered bolimia.
Speaker 1 (16:51):
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.
Speaker 4 (17:10):
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.
Speaker 3 (17:28):
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.
Speaker 4 (17:44):
Tell me about the team and they start pointing things out.
Speaker 3 (17:48):
Yeah.
Speaker 1 (17:48):
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,
(18:09):
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.
Speaker 4 (18:25):
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.
Speaker 3 (18:44):
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,
(19:07):
we need to sit down and have some real conversations.
Speaker 1 (19:11):
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
(19:35):
when I decided to move home for recovery. It was
the lowest of lows. I wouldn't wish that on anybody.
Speaker 4 (19:45):
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
(20:06):
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
through her eating disorder recovery, the struggle wasn't over. She
was still making frequent trips to the er, but when
(20:27):
the pain became too much to bear, Mick was more
determined than ever to find answers. So what was happening
with you mentally? Emotionally at this point?
Speaker 1 (20:48):
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?
(21:08):
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.
Speaker 5 (21:23):
Are you constipated?
Speaker 1 (21:24):
It looks like there's a bit of stool build up
in there, and I was like, I'm constipated all the time.
Speaker 4 (21:30):
And that's when your sister Christine stepped in. How did
her expertise as a nurse end up coming into play?
Speaker 1 (21:38):
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
(21:58):
at my issues. And she got me set up with
another urologist.
Speaker 3 (22:04):
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.
Speaker 1 (22:25):
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.
Speaker 5 (22:40):
And I can't explain.
Speaker 1 (22:42):
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,
(23:06):
she was able to explain it to me afterwards.
Speaker 3 (23:10):
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
(23:34):
the next patient. They don't know what you've been through
with your whole staff infections. UTIs whatever. You have to
tell the provider all that information for them to take
everything into consideration.
Speaker 4 (23:48):
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,
(24:09):
but nothing lasted. You were actually diligently pursuing answers to
something that has been going on for five six years
at this point, and one set of doctors in the
er telling you we can't help you. Go elsewhere, and
(24:31):
now an expert is telling you not finding anything. Where
do you go from there?
Speaker 1 (24:37):
Birth control, bladder medication, and elimination.
Speaker 4 (24:42):
Diet, eliminate what at this point I know?
Speaker 1 (24:46):
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
(25:09):
I was basically eating bland food and water every single day.
I avoided everything because I was so scared. I was terrified.
Speaker 4 (25:16):
You're feeling probably at your worst, and what kind of
response are you getting.
Speaker 1 (25:21):
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
(25:42):
because I was growing my own business.
Speaker 4 (25:47):
Okay, in two to three years, you just powered on
because from the outside world everything looked great. So what
is the turning point?
Speaker 1 (25:59):
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
(26:22):
and like I have interstitial cstiitis, And it started conversations
that were really really important for me.
Speaker 4 (26:29):
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.
Speaker 1 (26:45):
Yeah, one of those conversations ended with someone sending me
a link to Bendy Irwin's YouTube video.
Speaker 4 (26:52):
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.
Speaker 1 (27:04):
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.
Speaker 5 (27:15):
Was on the floor.
Speaker 1 (27:17):
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.
Speaker 4 (27:35):
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
(27:56):
she arrived, she was greeted by Doctor Minnie's nurse practitioner.
Speaker 1 (28:00):
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,
(28:22):
she would find something.
Speaker 4 (28:24):
What did she represent to you at that point my life?
Speaker 1 (28:29):
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
(28:50):
we are going to do everything that we can to
get you through this, because you deserve to be pain free.
Speaker 5 (28:59):
And I had never heard that before.
Speaker 4 (29:03):
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.
Speaker 1 (29:15):
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.
(29:36):
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.
And then doctor Minnie came in and said that they
excised a lesion of endometriosis and substantial scar tissue.
Speaker 3 (30:00):
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.
Speaker 4 (30:21):
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?
Speaker 2 (30:36):
What I tell people it's what comes out like period blood.
Speaker 4 (30:39):
That tissue is called enemetrium.
Speaker 2 (30:41):
Enemetriosis is where something that looks like that tissue grows outside.
Speaker 5 (30:44):
Of the uterus.
Speaker 4 (30:46):
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.
Speaker 2 (30:55):
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
(31:18):
with bowel movements, bladder urgency, pain with exercise, or standing,
So it basically affects pretty much everything in the pelvis
at some point as it gets worse, it can also
cause like scarring of the Philippian tubes and that can
lead to fertility issues. So it really impacts many different
aspects of someone's life.
Speaker 4 (31:35):
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.
Speaker 2 (31:50):
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.
Speaker 4 (31:59):
By the way, it also worsens balelfunction.
Speaker 2 (32:01):
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.
Speaker 4 (32:09):
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
(32:33):
very common. It's actually, we think affects at bare minimum
ten percent of women. People assign FIELD at birth. But
the problem is it can only be definitively diagnosed surgically,
meaning that it doesn't often show up on imaging studies.
Speaker 2 (32:46):
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.
Speaker 4 (33:04):
That sort of thing.
Speaker 2 (33:04):
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
birth control, nothing's really helping. That it somehow is sort
of reflective of their tolerance for pain, or maybe they're
(33:27):
a hypochondriac, rather than that, maybe there's something going on
that there's a medical condition that's causing it.
Speaker 4 (33:33):
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,
(34:00):
for the irregular cycle, for the UTIs the pain.
Speaker 5 (34:07):
It was so overwhelming the week after.
Speaker 1 (34:12):
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.
Speaker 5 (34:24):
Was like, whoa. It almost felt like magic.
Speaker 4 (34:29):
What does your treatment look like today? Have you had
any major flare ups or set back since you were
properly diagnosed?
Speaker 1 (34:39):
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
(35:03):
control that I wasn't managing it properly and stress is
one of my main triggers for bladder pain and reproductive pain,
and I'm currently trying to fight through that. But I
just had an appointment with doctor Minnie and again she's like,
we're going to get this taken care of.
Speaker 4 (35:23):
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?
Speaker 5 (35:41):
It has brought me so much.
Speaker 1 (35:46):
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
(36:09):
they couldn't feel seen or couldn't feel heard.
Speaker 5 (36:13):
That's all I can ask for.
Speaker 4 (36:16):
Are there things that give you hope in terms of
the future of treatment for demetriosis?
Speaker 2 (36:23):
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
(36:43):
Tigue and so many celebrities have spoken about their experience
with endometriosis. And there are some of these places like
ct endo Rise in Connecticut and MIT that are actually
really trying to do good work and trying to find
some of these answers. So I am very optimistic. I
think that things even within the last couple of years
compared to when I finished my training in twenty ten,
(37:04):
was very different, and so much now is looking more hopeful.
Speaker 4 (37:09):
What are you most proud of about the way in
which your sister's been navigating this diagnosis.
Speaker 3 (37:16):
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.
Speaker 4 (37:34):
What do you want people to take away from your story?
Speaker 1 (37:37):
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
actually make sense. And if you use that as strength
(37:59):
to take with you throughout this life, whether it be
like a lesson that you learned from your diagnosis or
the diagnosis process, I hope that you know that your
body makes sense, and your story makes sense, and what
you are going through makes complete sense when it feels
(38:22):
like it doesn't.
Speaker 4 (38:24):
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.
Speaker 1 (38:43):
My name is Mixxason and I struggled for ten years
until I got my endometriosis diagnosis.
Speaker 4 (38:51):
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
(39:14):
in her brain and scramble to find both the cause
and to treatment to save what remains of her vision.
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com,
and please rate and review Symptomatic wherever you get your podcasts.
(39:38):
We'll see you next time. Until then, be well. Symptomatic
is a production of Ruby Studio from iHeartMedia. Our show
is hosted by me Lauren Bret Pacheco. Executive producers are
Matt Romano and myself. Our EP of Post Production is
James Foster. Our Supervising producer is Cierra Kaiser. Our writers
(39:58):
are John Irwin and I Diana Davis, and our editor
is Sierra Spreen.
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.
Speaker 2 (00:18):
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.
Speaker 3 (00:30):
She'd say, I cannot live with these symptoms all the time.
I just want to live a quote unquote normal life.
Speaker 1 (00:38):
I was at a loss, like I'm looking down and
I'm seeing red and no one's helping me.
Speaker 4 (00:53):
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.
(01:17):
These are their stories and Lauren bred Pacheco and this
is symptomatic. Nick naturally radiates energy, joy, and warmth with
(01:42):
her lively, outdoorsy spirit. She makes everyone she meets feel
like family. These qualities not only carried her through her
toughest health challenges, but also help her make a real
impact in the lives of others. For people who don't
know you, tell me a little bit about yourself. How
would you describe yourself.
Speaker 1 (02:01):
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.
Speaker 5 (02:18):
Online and gained a community from that.
Speaker 4 (02:22):
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.
Speaker 1 (02:29):
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.
Speaker 5 (02:38):
And I'm a.
Speaker 1 (02:40):
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.
Speaker 4 (02:56):
For people who don't know, Mick, how would you describe
to people.
Speaker 3 (03:01):
Oh, gosh, there's six of us siblings, So Mikayla is
the fifth.
Speaker 4 (03:08):
That's Christine, mix older sister.
Speaker 3 (03:11):
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.
Speaker 5 (03:23):
She's really really special.
Speaker 4 (03:25):
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.
Speaker 3 (03:40):
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.
Speaker 4 (04:01):
Health issues that seemed to evolve as Mick grew older.
Speaker 1 (04:05):
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.
Speaker 4 (04:22):
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.
Speaker 1 (04:29):
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.
Speaker 4 (04:39):
Little signs of mixed health issues appeared early on, but
it wasn't until she started to menstruate that suspicions began
to rise.
Speaker 1 (04:48):
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.
Speaker 5 (04:59):
I was like, is this normal?
Speaker 1 (05:00):
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.
Speaker 4 (05:13):
And so was that difficult now looking back going through
that at such an early age.
Speaker 1 (05:19):
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
(05:41):
wore like swim shirts around whenever I would go to
the pool because I had acne all over my back
and chest and arms.
Speaker 4 (05:48):
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.
Speaker 5 (06:03):
It was, for sure.
Speaker 3 (06:05):
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.
Speaker 4 (06:21):
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.
Speaker 1 (06:31):
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.
Speaker 3 (06:45):
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.
Speaker 4 (07:01):
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.
Speaker 1 (07:13):
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
(07:38):
this very unfamiliar life that I did not know how
to live at all.
Speaker 4 (07:45):
Over time, Mick started to feel lost in her own body,
turning to fad diets and facing the pressures that often
accompany them.
Speaker 1 (07:54):
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.
Speaker 5 (08:16):
A very wrong turn.
Speaker 1 (08:18):
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.
Speaker 4 (08:29):
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.
Speaker 1 (08:50):
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
(09:11):
in the mustache area, and my sisters also dealt with
that to some extent.
Speaker 5 (09:17):
So I was like, Okay, Like I guess I'm just
going to keep going.
Speaker 4 (09:20):
That is just the genetic Yeah, you know card you
were dealt.
Speaker 1 (09:25):
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
(09:46):
the hair that wasn't normal for a girl to have
in you know, social society standards.
Speaker 4 (09:54):
How did your UTIs progress to the point where they
became emergency situation?
Speaker 1 (10:01):
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
(10:21):
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
about an hour. My first emergency room visit was me
driving myself there.
Speaker 3 (10:42):
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.
Speaker 1 (10:56):
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.
Speaker 5 (11:11):
It was so painful.
Speaker 4 (11:13):
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?
Speaker 5 (11:24):
Oh?
Speaker 1 (11:25):
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.
(11:47):
Your lower abdomen is so swollen it feels like stabs.
Speaker 5 (11:52):
It really does.
Speaker 4 (11:56):
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.
Speaker 1 (12:15):
And by that time, my bladder issues started to get
exponentially worse.
Speaker 5 (12:23):
I was unable to walk.
Speaker 1 (12:24):
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.
Speaker 4 (12:33):
What are you being told it could.
Speaker 1 (12:35):
Be PCOS and inner social cystitis.
Speaker 4 (12:39):
Okay, so polycystic ovarian syndrome, and what are you being
told to do?
Speaker 1 (12:47):
Birth control and elimination, diet and bladder medication.
Speaker 4 (12:53):
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.
Speaker 1 (13:17):
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
(13:37):
be like, oh, you know, like it's fine, it doesn't matter.
Speaker 4 (13:40):
So you know that something's wrong, you just don't know
how to advocate or articulate your issues.
Speaker 1 (13:46):
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.
Speaker 3 (13:59):
It was.
Speaker 4 (14:02):
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
(14:25):
life away from home, Mick began sharing her fitness and
diet routines online, quickly gaining a following and praise for
her physical appearance. What her followers didn't know was that
she was also in the grip of an eating disorder,
and their comments only fueled that struggle. And so you're
navigating things that are affirming your negative sense of self.
Speaker 1 (14:50):
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
(15:14):
the positive feedback that I was getting.
Speaker 4 (15:17):
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.
Speaker 5 (15:37):
Yes.
Speaker 1 (15:38):
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.
Speaker 5 (15:57):
For hours a day, twice a day.
Speaker 1 (16:00):
But at this point in time, I also noticed my
body swelling to an amount that.
Speaker 4 (16:09):
Was not normal in what way and how So this.
Speaker 1 (16:14):
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.
Speaker 4 (16:27):
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,
(16:49):
it triggered bolimia.
Speaker 1 (16:51):
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.
Speaker 4 (17:10):
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.
Speaker 3 (17:28):
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.
Speaker 4 (17:44):
Tell me about the team and they start pointing things out.
Speaker 3 (17:48):
Yeah.
Speaker 1 (17:48):
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,
(18:09):
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.
Speaker 4 (18:25):
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.
Speaker 3 (18:44):
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,
(19:07):
we need to sit down and have some real conversations.
Speaker 1 (19:11):
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
(19:35):
when I decided to move home for recovery. It was
the lowest of lows. I wouldn't wish that on anybody.
Speaker 4 (19:45):
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
(20:06):
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
through her eating disorder recovery, the struggle wasn't over. She
was still making frequent trips to the er, but when
(20:27):
the pain became too much to bear, Mick was more
determined than ever to find answers. So what was happening
with you mentally? Emotionally at this point?
Speaker 1 (20:48):
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?
(21:08):
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.
Speaker 5 (21:23):
Are you constipated?
Speaker 1 (21:24):
It looks like there's a bit of stool build up
in there, and I was like, I'm constipated all the time.
Speaker 4 (21:30):
And that's when your sister Christine stepped in. How did
her expertise as a nurse end up coming into play?
Speaker 1 (21:38):
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
(21:58):
at my issues. And she got me set up with
another urologist.
Speaker 3 (22:04):
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.
Speaker 1 (22:25):
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.
Speaker 5 (22:40):
And I can't explain.
Speaker 1 (22:42):
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,
(23:06):
she was able to explain it to me afterwards.
Speaker 3 (23:10):
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
(23:34):
the next patient. They don't know what you've been through
with your whole staff infections. UTIs whatever. You have to
tell the provider all that information for them to take
everything into consideration.
Speaker 4 (23:48):
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,
(24:09):
but nothing lasted. You were actually diligently pursuing answers to
something that has been going on for five six years
at this point, and one set of doctors in the
er telling you we can't help you. Go elsewhere, and
(24:31):
now an expert is telling you not finding anything. Where
do you go from there?
Speaker 1 (24:37):
Birth control, bladder medication, and elimination.
Speaker 4 (24:42):
Diet, eliminate what at this point I know?
Speaker 1 (24:46):
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
(25:09):
I was basically eating bland food and water every single day.
I avoided everything because I was so scared. I was terrified.
Speaker 4 (25:16):
You're feeling probably at your worst, and what kind of
response are you getting.
Speaker 1 (25:21):
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
(25:42):
because I was growing my own business.
Speaker 4 (25:47):
Okay, in two to three years, you just powered on
because from the outside world everything looked great. So what
is the turning point?
Speaker 1 (25:59):
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
(26:22):
and like I have interstitial cstiitis, And it started conversations
that were really really important for me.
Speaker 4 (26:29):
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.
Speaker 1 (26:45):
Yeah, one of those conversations ended with someone sending me
a link to Bendy Irwin's YouTube video.
Speaker 4 (26:52):
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.
Speaker 1 (27:04):
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.
Speaker 5 (27:15):
Was on the floor.
Speaker 1 (27:17):
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.
Speaker 4 (27:35):
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
(27:56):
she arrived, she was greeted by Doctor Minnie's nurse practitioner.
Speaker 1 (28:00):
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,
(28:22):
she would find something.
Speaker 4 (28:24):
What did she represent to you at that point my life?
Speaker 1 (28:29):
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
(28:50):
we are going to do everything that we can to
get you through this, because you deserve to be pain free.
Speaker 5 (28:59):
And I had never heard that before.
Speaker 4 (29:03):
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.
Speaker 1 (29:15):
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.
(29:36):
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.
And then doctor Minnie came in and said that they
excised a lesion of endometriosis and substantial scar tissue.
Speaker 3 (30:00):
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.
Speaker 4 (30:21):
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?
Speaker 2 (30:36):
What I tell people it's what comes out like period blood.
Speaker 4 (30:39):
That tissue is called enemetrium.
Speaker 2 (30:41):
Enemetriosis is where something that looks like that tissue grows outside.
Speaker 5 (30:44):
Of the uterus.
Speaker 4 (30:46):
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.
Speaker 2 (30:55):
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
(31:18):
with bowel movements, bladder urgency, pain with exercise, or standing,
So it basically affects pretty much everything in the pelvis
at some point as it gets worse, it can also
cause like scarring of the Philippian tubes and that can
lead to fertility issues. So it really impacts many different
aspects of someone's life.
Speaker 4 (31:35):
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.
Speaker 2 (31:50):
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.
Speaker 4 (31:59):
By the way, it also worsens balelfunction.
Speaker 2 (32:01):
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.
Speaker 4 (32:09):
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
(32:33):
very common. It's actually, we think affects at bare minimum
ten percent of women. People assign FIELD at birth. But
the problem is it can only be definitively diagnosed surgically,
meaning that it doesn't often show up on imaging studies.
Speaker 2 (32:46):
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.
Speaker 4 (33:04):
That sort of thing.
Speaker 2 (33:04):
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
birth control, nothing's really helping. That it somehow is sort
of reflective of their tolerance for pain, or maybe they're
(33:27):
a hypochondriac, rather than that, maybe there's something going on
that there's a medical condition that's causing it.
Speaker 4 (33:33):
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,
(34:00):
for the irregular cycle, for the UTIs the pain.
Speaker 5 (34:07):
It was so overwhelming the week after.
Speaker 1 (34:12):
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.
Speaker 5 (34:24):
Was like, whoa. It almost felt like magic.
Speaker 4 (34:29):
What does your treatment look like today? Have you had
any major flare ups or set back since you were
properly diagnosed?
Speaker 1 (34:39):
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
(35:03):
control that I wasn't managing it properly and stress is
one of my main triggers for bladder pain and reproductive pain,
and I'm currently trying to fight through that. But I
just had an appointment with doctor Minnie and again she's like,
we're going to get this taken care of.
Speaker 4 (35:23):
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?
Speaker 5 (35:41):
It has brought me so much.
Speaker 1 (35:46):
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
(36:09):
they couldn't feel seen or couldn't feel heard.
Speaker 5 (36:13):
That's all I can ask for.
Speaker 4 (36:16):
Are there things that give you hope in terms of
the future of treatment for demetriosis?
Speaker 2 (36:23):
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
(36:43):
Tigue and so many celebrities have spoken about their experience
with endometriosis. And there are some of these places like
ct endo Rise in Connecticut and MIT that are actually
really trying to do good work and trying to find
some of these answers. So I am very optimistic. I
think that things even within the last couple of years
compared to when I finished my training in twenty ten,
(37:04):
was very different, and so much now is looking more hopeful.
Speaker 4 (37:09):
What are you most proud of about the way in
which your sister's been navigating this diagnosis.
Speaker 3 (37:16):
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.
Speaker 4 (37:34):
What do you want people to take away from your story?
Speaker 1 (37:37):
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
actually make sense. And if you use that as strength
(37:59):
to take with you throughout this life, whether it be
like a lesson that you learned from your diagnosis or
the diagnosis process, I hope that you know that your
body makes sense, and your story makes sense, and what
you are going through makes complete sense when it feels
(38:22):
like it doesn't.
Speaker 4 (38:24):
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.
Speaker 1 (38:43):
My name is Mixxason and I struggled for ten years
until I got my endometriosis diagnosis.
Speaker 4 (38:51):
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
(39:14):
in her brain and scramble to find both the cause
and to treatment to save what remains of her vision.
As always, we would love to hear from you. Send
us your thoughts on this episode, or share a medical
mystery of your own at Symptomatic at iHeartMedia dot com,
and please rate and review Symptomatic wherever you get your podcasts.
(39:38):
We'll see you next time. Until then, be well. Symptomatic
is a production of Ruby Studio from iHeartMedia. Our show
is hosted by me Lauren Bret Pacheco. Executive producers are
Matt Romano and myself. Our EP of Post Production is
James Foster. Our Supervising producer is Cierra Kaiser. Our writers
(39:58):
are John Irwin and I Diana Davis, and our editor
is Sierra Spreen.
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