Endo Year Reflections: Ep #4 When Pain Meets Community, Misinformation Loses

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Pain that makes you faint is not “just periods,” and “just get pregnant” isn’t a plan—it’s a myth. We open the Endo Year Reflection series with a clear-eyed look back at the stories and science that reshape care for endometriosis and chronic pelvic pain. You’ll hear how harmful narratives spread, why they stick, and what actually helps when you’re stuck between dismissal and a diagnosis that takes too long to arrive.

Fisayo’s journey lays bare how predictably timed fainting, ER visits, and back pain were waved away for years—even with a physician in the family. Naming endometriosis became a turning point, and her documentary Walking Through Walls transforms private suffering into public advocacy. Nikki’s path mirrors what so many endure: repeated ER trips, migraines tied to cycles, sports and school sacrificed, and well-meaning but wrong answers. Excision surgery changed her trajectory, but honest talk about fertility loss and the quiet grief of parenting through pain offers the validation many have been missing.

We also reflect on getting curious about the mechanics of cramps. Why do some cycles feel manageable while others become “death cramps”? With a nod to the GYRL lab’s research and Kate Helen Downey’s blend of humor and rigor from the podcast Cramped, we explore dysmenorrhea, prostaglandins, and why basic questions about menstrual pain still lack basic answers. Then we get practical: a holiday survival kit with meds, heating pads, safe snacks, and comfort items; travel pacing; and boundaries that protect your energy without apology. Stories matter, accuracy matters, and community matters—because none of us should navigate this alone.

Take one idea from this conversation and let it sit. If it helps, share this episode with someone who needs better information or a reminder that they aren’t imagining it. Subscribe, leave a review, and tell us the biggest myth you want gone for good.

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Episode Transcript

SPEAKER_02 (00:00):
With the Indo Year coming up, it's a perfect time

(00:02):
to reflect on all the lessons,growth, and amazing guests we've
had on Indobattery.
But instead of one big recap,I'm breaking it into quick,
bite-sized reflections multipletimes a week.
Let's revisit what inspired us,learn what we missed, and
recharge together in our EndoYear Reflection series.
Join me each episode as we lookback.

(00:27):
Welcome to Indobattery, where Ishare my journey with
endometriosis and chronicillness while learning and
growing along the way.
This podcast is not a substitutefor medical advice, but a
supportive space to providecommunity and valuable
information so you never have toface this journey alone.
We embrace a range ofperspectives that may not always
align with our own, believingthat open dialogue helps us grow

(00:48):
and gain new tools.
Join me as I share stories ofstrength, resilience, and hope.
From personal experiences toexpert insights.
There are some episodes thatfeel important, and then there

(01:09):
are those episodes that feelnecessary.
One of those is what I lovinglycall Mythbusting 101.
An episode that honestly, if Icould rewrite podcast history,
might have been the very firstepisode of Indobattery.
Because it moves fast, it'sdirect, and it tackles the myths
so many of us have been told,sometimes casually, sometimes

(01:33):
repeatedly, and sometimes bypeople in positions of
authority.
Things like, this is normal,just get pregnant, we didn't see
anything, it'll get better onits own.
With the guidance of boardcertified patient advocates, I
wanted to clearly lay out why somany of these statements are
wrong and what the actual factsare.

(01:54):
This episode exists as aresource, something you can
share with someone who's earlyin their journey or someone
who's been told these things forfar too long.
And this episode exists becauseof stories like Vasaio
Thompson's.

(02:21):
She saw countless doctors, shehad a hospital bed that was
essentially all hers, and yetshe was still dismissed, still
not believed, still not helped.

SPEAKER_00 (02:32):
Like clockwork that it was two weeks before my
period, and during my period,I'd always faint and I had to be
taken to a hospital.
And it progressed so much, itwas like every two to three days
I was in the hospital.
It was clockwork.
All the teachers' name.
The teachers will say, Fisayo,wait, let me finish teaching
before you faint.
And I'd clean the building down.

(02:54):
Everyone knew Fisayo had to comeagain, you know, and say, Come
on, it's just periods, manage.
No, I can't manage.
My back is killing me.
And in I think in my culture,they say only pregnant women and
elderly people have backaches.
So why are you having backaches?
But I didn't want to say it'snot just the backache, it's my
stomach, it's my pelvic, youknow, I've got pelvic pain as

(03:15):
well.
Until my family doctor said, Irealize you're always here on
your period.
And two weeks before yourperiod, I said yes.
He said, Do you have tummyaches?
I said, Yes, I have really badpain, especially during my
period.
And he just said, and that wasthe end of that conversation.
And he didn't say anything.
You know, he checked, checkhere, check there, you know,

(03:36):
physical exam, and that'd be theend of it.
I had a permanent bed in thehospital.
There was a bed that wasn'tgiven to any other patients
because I was constantly in thehospital, two, three days in the
hospital.
It was that bad throughoutsecondary school.

SPEAKER_02 (03:52):
What makes Vasyo's story even more striking is that
her husband is a physician, andeven then, he had to fight again
and again for her care.

SPEAKER_00 (04:02):
I remember being in so much pain, and he's reading
for his exams, and I'd say,open, can you read through your
book and see if you can findwhat is wrong with me, you know?
And he says, Something is at theback of my mind, like, I don't
know what it is, but somethingis almost clicking, but not
clicking.
I don't know what it is.
And when when I finally heardthe word endometriosis, I

(04:25):
remember driving back home.
If I I just had to pack and Icalled him and I said, Dear,
have you ever heard ofendometriosis?
The doctor said I don't have it,but that's the probably the only
last thing.
And he said, Oh my goodness,endometriosis, oh yeah, it fits
the pill.
And I said, What?
Are you serious?
You know what endometriosis is?

(04:45):
He said, Yes, they justmentioned it once in medical
school.
They teach them about hundredsof thousands of diseases and
conditions.
And this was just it was anelective class, so you didn't
have to attend.
And it was just mentioned as arare disease.

SPEAKER_02 (05:05):
One of the myths we hear so often is that you can't
get pregnant with endometriosis,or that pregnancy somehow cures
it.
Vasio has three daughters.
She didn't struggle withfertility, and yet her
endometriosis was severe.
She went years withoutdiagnosis, allowing this disease
to quietly ravage her body.

(05:26):
She turned that pain intoadvocacy by creating the
documentary Walking ThroughWalls.
A raw, heartbreaking look at herlife, her family, and the dreams
this disease tried to take.
Despite everything, Fasayo stillhas joy.
She still laughs, she stillshows up.
And as she so beautifullyshared, while this disease can

(05:46):
take so much, it can also give.
And I am incredibly grateful forthe friendship that I have with
Fasayo.
Her story is branded in myheart.
Another story that deserves itsown space is Nikki Phillips,
shared across episodes 180 and181.
Nikki and I met because of thispodcast.

(06:09):
She was a listener first, andover time she became a dear
friend.
Her journey reflects what somany people experience years of
delated diagnosis while livingwith PCOS, adenomiosis, and
endometriosis, and more.
She brought up her symptomsagain and again, had terrible
periods from a young age, alongwith migraines, fainting,

(06:30):
vomiting, symptoms that wererepeatedly dismissed or viewed
in isolation instead of as partof a bigger picture.

SPEAKER_03 (06:36):
I remember I passed out in church on Easter Sunday.
I was on my period and it wassuper painful.
And I stood up and I didn't feelwell and I fell down and hit my
head on a pew and they had totake me out in an ambulance
because I kept passing out and Iget to the ER and they're like,
oh, this just happens.
It's called some vasalvagalreaction.
I don't even know if I'mpronouncing that right, but just
this happens to young women andyou'll outgrow it and you'll be

(06:59):
fine.
And it did.
It happened repeatedlythroughout up until I was in
college, maybe even grad school.
And I just kind of would dealwith it.
But by that point, I had givenup some things like volleyball.
I was an avid volleyball playerthrough middle school.
And so by my sophomore year inhigh school, I just felt like I
couldn't keep up with theconditioning.
I switched over to other thingsand just made it work.
I would always have to take lotsof painkillers.

(07:21):
I'd miss school occasionally,but I didn't think anything of
it.

SPEAKER_02 (07:24):
She heard all the familiar lines.
Just get pregnant.
We don't see anything.
This is normal.
Eventually, Nikki had excisionsurgery and is doing much
better, but so much of herjourney could have looked
different had she been believedsooner.
She also courageously shared herfertility journey.
The repeated loss, theheartbreak, and the things that

(07:47):
were said to her during one ofthe most vulnerable seasons in
her life.
Things that were shocking andyet painfully familiar to too
many in this community.
One of the most honest andnecessary parts of this
conversation was about parentingwith endometriosis.
And I want to say this clearly.

(08:10):
But parenting while living withchronic illness is not what many
of us imagined it would be.

SPEAKER_03 (08:15):
I used to, I used to be a teacher, and then I had my
son, and then I had my daughter.
And when my son was inkindergarten, I decided to
switch to homeschool.
But I thought, okay, I canhomeschool.
And I'll never forget the firstyear I was doing it.
I could sit with both theheating pads and all the pain
medicine and not be like judgedthe way I was, maybe with my
students wondering.
I should want to hide it from myson.

(08:35):
And I do remember one of mystudents going back in the day
when I was a teacher, thishappens to you every month.
Are you okay?
Like even the students picked upon it.
But I remember thinking, okay, Ican get I can do this in
homeschool.
I can tough it out.
But it got to a point wherethere were days where I'd have
migraines.
That was another symptom Istarted to have in the last five
years.
Migraines that were very tied tomy cycle and would just take me
out for an entire day.

(08:56):
And so I would have a migraineand it would start to come and I
would try to like push throughand do school and take care of
my daughter and work and dothings, you know.
And I remember my son comingover and being like, No, you
have another headache.
So I would tell him, Mom has aheadache, and he'd say, Oh no.
And he would get hit, put theblanket on me and tuck me in and
then get his iPad and then justwander.
Oh, like he knew it was time toplay on the iPad.

(09:18):
And he, of course, he felt sorryfor me, but to him, it was like,
oh, I get hours of uninterruptedscreen time and I just was
surviving, you know?
And the fatigue, like when Iwould have those those hours of
just pain where I couldn't getout of bed.
Like, and it, I don't, I lookback and like, I don't even know
how I did it, or if it just gotworse over the years by the time
I was homeschooling, like tryingto parent, trying to just be

(09:39):
there for my kids.

SPEAKER_02 (09:41):
There is love and there is grief, and often they
exist at the same time.
Nikki and I spoke openly aboutwhat it means to parent through
pain, exhaustion, andlimitations, and how rarely that
grief is acknowledged.
Beyond her story, Nikki has madea profound impact on my life.
She inspires me, she challengesme, she shows up for this

(10:04):
community with honesty andheart, and she has become one of
the biggest cheerleaders behindthis podcast.
I am deeply grateful for her.
Another voice that inspired methis year was Kate Helen Downey.
In episode 139, we talked aboutperiods, why they're so painful,

(10:24):
why answers take so long, andwhy so many of us are left doing
our own research.

SPEAKER_01 (10:29):
Trying to answer the question, what is actually
hurting when I have cramps?
Like what is what are themechanics of this pain?
And why do sometimes I get quoteunquote regular cramps that are
like unpleasant, uncomfortable,but not debilitating?
And then sometimes I get what Icall death cramps, which are

(10:52):
excruciating, debilitating.
They make me throw up, they makeme pass out.
And so what is somethingdifferent actually physically
happening?
Or is it just regular crampslike turned up to a 15?
You know, I had this question.
Doctors couldn't answer it forme.
Uh, so I went to a lab inEvanston, Illinois called the

(11:14):
GYRL lab, uh, the gynecologicalresearch lab.
And they are specificallystudying dysmenorrhea, which is
the medical term for uh severeperiod pain.
And they're doing things that Ithought were like very basic
research questions that youwould think at this point in

(11:34):
2025 have been answered, hadbeen answered in the 60s or 70s.
Right.
But they haven't.

SPEAKER_02 (11:41):
Through her podcast, Cramped, Kate brings humor,
curiosity, and compassion intoconversations that deeply need
all three.
I love connecting with otherpodcast hosts because there is
something incredibly validatingabout sitting across from
someone who gets it, who asksthe questions that no one taught
us how to ask, and who wants tomake things better for the next

(12:04):
person.
What these episodes reminded meis this stories matter, accuracy
matters, and community matters.
This podcast exists becausemisinformation still harms
people, because dismissal stillhappens, and because none of us
should have to navigate thisalone.
If you take anything from theseconversations, I hope it's this.

(12:27):
You're not imagining it, you'renot weak for needing help, and
even in the hardest stories,there is still room for
connection, meeting, and yes,joy.
Sometimes that's enough to keepus going.
Oh, and here's what you can putinto your holiday survival
guide.
Bring your own survival kit,meds, heating packs, safe

(12:50):
snacks, emotional support items.
Because going around travelingand being in places that aren't
your home can be challenging.
It's okay to be prepared and notfeel bad for doing that.
Don't let anyone stop you fromdoing what's best for you.
As we wrap up this reflection,I'm always struck by just how
much learning lives inside theseconversations.

(13:12):
Looking back, it's not justabout the information.
It's what continued to inspireme, challenge me, and sometimes
gently nudge me to see things alittle differently.
My hope is that something youheard today sparked a moment of
recognition, curiosity, or evena quiet, huh, that makes sense
now.
So here's what I'm gonnachallenge you with.

(13:34):
Take one idea from this episode,just one, and let it sit with
you.
You don't have to fix anything,change anything, or suddenly
become a brand new person byMonday.
Growth counts even when ithappens in sweatpants.
Be gentle with yourself.
Honor how far you've come thisyear, and remember, you're
allowed to learn, unlearn, rest,and repeat.

(13:56):
Thank you for reflecting withme.
Continue being curious untilnext time.
Continue advocating for you andfor others.