May 7, 2025 • 44 mins
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Kate Downey shares her 22-year journey through debilitating period pain and her quest for answers that ultimately led to creating her podcast "Cramped." Through extensive research and interviews with experts, Kate uncovers why period pain remains so misunderstood despite affecting hundreds of millions of people worldwide.
• 30% of menstruating people (approximately 522 million worldwide) experience debilitating period pain
• The widely accepted explanation for period cramps is being questioned by researchers at the GYRL lab
• Female bodies are systematically excluded from medical research, leading to gaps in treatment effectiveness
• Even medications like antidepressants work differently depending on where you are in your menstrual cycle
• The stigma around periods keeps us isolated in our pain, which neurologically can make the pain worse
• Women's health research is making progress, but requires more advocacy and awareness
• Creating community through "women's circles" or "clam bakes" helps share crucial information about treatments
• Resources like cureperiodpain.org offer opportunities to participate in studies that advance menstrual research
You can find Kate Helen Downey's podcast "Cramped" wherever you listen to podcasts, and follow her on Instagram @KateHelenDowney or TikTok @KateIsCramped.
Website endobattery.com
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Episode Transcript
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Speaker 1 (00:00):
Have you ever wondered why period cramps
happen or why we know so littleabout them?
Or maybe you felt like youcouldn't talk about periods but
weren't sure why.
In this episode, I'm joined byKate Downey, the creator of the
podcast Cramped, who dives deepinto the science, the silence
and the stigma surroundingperiod pain.
She shares what she's learned,what shocked her and why this
(00:21):
conversation matters.
You won't wanna miss this, sostick around.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
growing along the way.
This podcast is not asubstitute for medical advice,
but a supportive space toprovide community and valuable
information, so you never haveto face this journey alone.
(00:43):
We embrace a range ofperspectives that may not always
align with our own, believingthat open dialogue helps us grow
and gain new tools.
Join me as I share stories ofstrength, resilience and hope,
from personal experiences toexpert insights.
I'm your host, alana, and thisis IndoBattery charging our
lives when endometriosis drainsus.
(01:04):
Welcome back to EndoBattery.
Grab your cup of coffee or yourcup of tea and join me at the
table Today.
I am joined by my guest, kateDowney, who is a storyteller,
podcast powerhouse and thecreative mind behind Cramped, a
podcast investigating why periodpain is so misunderstood and
(01:25):
mistreated.
She has produced hit shows forWondery, built live podcast
events with names like MalcolmGoodwill and co-founded Caveat
NYC, where she made science andhistory hilarious and human.
Kate has a knack for makingboring things fascinating and
today she's here to talk abouthow she combined her skillset
(01:45):
and her story with the curiositysurrounding periods.
Please help me in welcomingKate Helen Downey to the table.
Thank you, kate, so much forjoining me today on this podcast
.
It is such an honor to have yousit down with me and go over
all the things that you're doing.
Thank you so much.
Speaker 2 (02:04):
Thank you so much for having me.
I'm so excited to be here, ofcourse.
Speaker 1 (02:08):
Now, this is something that I'm excited to
talk about, because you have apodcast which I think is
phenomenal.
It's called Cramped, but youdidn't start this overnight and
for no reason Can you tell ushow this all came to be and the
process it took you to get tothis point to want to do a
podcast like cramped.
Speaker 2 (02:28):
Yeah, I mean the long story is 22 years ago, when I
was 14, I got my first periodand then I got my second or
third period and it washorrifically painful.
I was in science class, I thinkin eighth grade, and started a
full body sweat.
I thought maybe like I had astomach bug or food poisoning.
(02:50):
I asked to be excused to go tothe bathroom and realized I
couldn't stand all the way up,that my whole midsection was
just completely clenched downand like twisted.
I tried to get to the bathroomand had to keep stopping in the
halls with my hand against thelocker like trying to catch my
breath, trying to stand upDidn't think I was going to make
(03:11):
it Suddenly realized like howfar it actually is to the
bathroom, started thinking likeam I going to throw up in the
middle of the hallway?
Like this is horrible.
So after I went to the bathroomand threw up, I went to the
nurse's office and I wasconvinced I was having like that
my appendix had burst, becauseI couldn't imagine what else
(03:33):
could possibly hurt this much.
Like I was a pretty healthy kid.
You know this was me at 14.
I had never experienced painlike this before, pain like this
before.
And so in my fantasy, as I'mdragging myself down the school
halls, I'm like this is what amedical emergency is.
(03:54):
This is what they talk about,this is what they describe, this
is what you see on TV.
I'm going to get to the nurse'soffice.
She's going to immediately seehow bad it is.
She's going to call anambulance.
They're going to take me to thehospital and do emergency
surgery.
And then I'm going to wake upand a doctor is going to explain
to me like what crazy thingwent wrong inside of my body to
cause this much pain.
I was like I just have to get tothe nurse's office.
I just have to get to thenurse's office.
(04:15):
And when I got there, she askedme if I she knows.
She asked me what was wrong.
It was like oh, I've thrown upa couple of times.
It hurts so much.
You know was describing what wasgoing on was still sweating,
full body sweat couldn't standup straight.
She goes oh, do you have yourperiod?
I was like, yeah, but kind oflike what does that have to do
with anything?
And she was like oh well,here's a hot water bottle.
(04:38):
You know you can lie on the cotfor a little while, but like
you do have to go back to classeventually and I was like hold
on, there must be somemisunderstanding.
Like are you?
Like?
No, call an ambulance.
And so instead I just I lay onthis cot with a hot water bottle
and got up every 10 minutes tothrow up in her bathroom until
(04:58):
she finally called my mom andwas like, yeah, I guess you're
not going back to class.
She called my parents.
My mom came to get me.
She was very concerned becausemy mom had never had these kinds
of cramps before, so she didwhat she could for me.
After we got home, I kind ofpassed out from the pain and
when I woke up the cramps weregone.
My mom took me to thegynecologist like a week later
(05:19):
and the gynecologist explainedto me that some women just have
very bad cramps and it wouldprobably get better when I had
my first baby, which issomething that is not super
helpful to say to a 14-year-old.
Speaker 1 (05:32):
Yeah, and that's like the last thing you want to hear
when you're 14.
Speaker 2 (05:36):
Right.
And so the rest of my adultlife, the rest of my
menstruating life, up until lastyear, I went to doctor after
doctor.
I switched insurances a lot inmy 20s.
I went to doctors in ruralMaine, I went to doctors in
Boston, where I went to college.
I went to doctors in New York,where I lived for almost a
decade, and I went to doctors inLA where I moved about five
(05:57):
years ago, and no doctor couldgive me no gynecologist.
Nobody could give me anexplanation of what was
happening.
When my periods hurt that bad,when my cramps got so bad that I
was throwing up, I ended up inemergency rooms with doctors who
tried to give me IVanti-nauseas.
That did not work, even when Iwould explain to them.
(06:18):
I have horrible cramps.
This is what happens when mycramps get really bad.
They did not believe me.
I did my own research, broughtmy research to the doctors that
I was seeing, said hey, could itbe endo?
Could it be adenomyosis?
Could it be PCOS?
Could it be all these things?
And every time I was told no,it couldn't be that, because
blank.
No, it couldn't be that.
(06:39):
It couldn't be endometriosis,because otherwise you'd have
very heavy periods and I havevery light periods.
And no, it can't beendometriosis, because otherwise
, because if it was, that youwould be having pain throughout
your cycle, not just during yourperiod.
Nope, turns out it can totallyjust be on your period, anyway,
and so on and so forth.
And so it meant that I got tothe age of 36 with no diagnosis,
(07:00):
no effective treatment, and Ikind of got sick of it.
I ended up, in the course of myweird meandering career, I
became a podcast producer and soI decided this is something I
want to do a podcast about.
I want to find out for once andfor all what is wrong with me,
why I've been in unexplained anduntreated pain for 22 years.
(07:24):
That, after talking to peopleabout it, like as I got older, I
realized is actually notuncommon.
It's very common to be havingextreme, debilitating pain
during your period.
And yet why did every doctorlook at me like I was some
medical mystery?
So that kind of cognitivedissonance always interested me
(07:45):
and always made me really wantto like, dig into that, like
what could possibly be going onRight.
Plus, I wanted a diagnosis andtreatment Right, and so I got a
grant from the Simons Foundationin New York City and I was able
to make 10 episodes of a seriescalled Cramped where I dug into
(08:11):
all of my questions.
That seemed like really basicquestions and, of course, once
you start digging into them, itturns out they're not so basic.
Questions like, hey, why docramps hurt?
Like what is actually cramping,what is actually hurting.
They seem really basic, seemlike there'd be simple answers.
There aren't.
Questions like why don't doctorsknow what I'm talking about
when I bring them my symptoms?
Seems like there should be aneasy answer for that.
(08:34):
Seems like it should be simple.
It's not.
It turns out there's a deephistory.
So that's really what I wentinto it trying to find out.
That was about a year ago.
I started working on it.
Over the course of the year Iwent to see some specialists,
which were expensive, but Idecided to invest in that
finally and I got diagnosed withendometriosis as part of my
(08:56):
constellation of diagnoses,because I feel like, as
endometriosis is becoming moreprevalent in conversation, it
still seems to be largelyignored in the medical system
when it comes to general GYN orfamily care.
Speaker 1 (09:25):
And again, this is much, much deeper than I think
any of us really understood whenwe first started exploring this
.
But what's interesting aboutyou is that you even mentioned
like my periods aren't heavy,but I'm in so much pain.
But the curiosity stopped atthat point, it sounds like, and
that's where your curiosity tookyou to where you are now with
your podcast and what you'redoing and discovering about
periods and discovering aboutwomen's health and menstrual
(09:48):
health and all of those thingsthat we deal with day in and day
out, but no one's talking aboutit.
And then all the nuances to theperiod why are they painful?
Why aren't we talking aboutthese?
Pain is one thing anddiscomfort's another.
How do we differentiate that?
And so I feel like this podcasthas been so needed.
(10:10):
So thank you for doing it andexploring that.
I encourage everyone to listento it because it's incredible
and you do an amazing job at it.
But I think what it highlightsmore is that there's different
facets of your period.
What is one thing from yourpodcast that you have learned
that just kind of blew your mind?
(10:30):
I'm sure there's a lot, butwhat is maybe one or two things
that you have taken away fromhaving your podcast.
That just was like.
I never even would have thoughtof that.
Speaker 2 (10:41):
Oh, yeah, okay.
So there's two things that cometo mind immediately that, for
me, just blew my mind right away.
One was in trying to answer thequestion what is actually
hurting when I have cramps, whatare the mechanics of this pain,
and why do sometimes I getquote unquote regular cramps
(11:03):
that are like unpleasant,uncomfortable but not
debilitating, and then sometimesI get what I call death cramps,
which are excruciating,debilitating, they make me throw
up, they make me pass out, andso what?
Is something different actuallyphysically happening, or is it
just regular cramps, like turnedup to a 15?
(11:24):
You know, I had this question.
Doctors couldn't answer it forme, so I went to a lab in
Evanston, illinois called theGYRL lab, the gynecological
research lab, and they arespecifically studying
dysmenorrhea, which is themedical term for severe period
pain, and they're doing thingsthat I thought were like very
(11:48):
basic research questions thatyou would think at this point in
2025, had been answered in the60s or 70s, right, but they
haven't, and so I think.
So what I learned is that ifyou Google, you know why do
period cramps hurt?
You're going to get anexplanation that tells you about
(12:11):
prostaglandins, which aremessengers, kind of like
hormones that are released whenyour progesterone dips,
basically your progesterone dipstelling your body like, okay,
time to have a period, thatcauses prostaglandins to get
released.
The prostaglandins bind withreceptors in the muscle of the
uterus and tell the uterus tosqueeze or contract.
(12:31):
That is what like squeezes theblood out of your uterus and the
uterine lining and when yourmuscle is squeezing that can
hurt, it can get sore.
It can also pull on the musclesin your back, your pelvic floor
muscles.
They kind of compensate forthat squeezing.
The prostaglandins also floodinto your system.
(12:52):
They don't just affect youruterus, they also affect other
muscles in your pelvis, but theyalso affect things like your
colon and your intestine, whichis why you get period poops,
which are amazing, yes, yes.
And so that process justlearning about that in my own
research, I was like oh, okay,and in my research they say the
(13:12):
pain comes from something calledischemia, which is when a
muscle squeezes so tightly forso long that oxygenated blood
can't get to the muscle fibersand the muscle fibers will die
if they don't get oxygenatedblood.
So they basically try to getyour attention and experience
pain.
They say like this is you know?
(13:33):
If it happens in your arm oryour leg it's called a Charlie
horse, right, that's ischemia.
And so you're essentiallygetting a Charlie horse in your
uterus and that's the widelyaccepted cause of all
dysmenorrhea.
All period pain is like it'sischemia from the prostaglandins
telling your muscle to squeeze,right, I was like, okay, I
(13:57):
didn't know that before.
Like, I knew the uterus wassqueezing to get blood out, but
I didn't really know all thedetails behind it.
That makes sense.
So I guess my death cramps isjust like too many
prostaglandins, like so muchischemia that it's like locking
up those muscles and causing somuch pain.
But like I still don't reallyunderstand why it happens
sometimes and not other times,right.
(14:19):
So I go and visit this lab and Ilike, lay, I go to the lead
researchers and interview themand I say, okay, here's how I
understand period pain to work.
Is that right?
And they're like no, you'relike.
I was like what?
Like?
Because that's literally whatevery textbook, every research
(14:39):
paper that I was able to findlike on in my own research
that's what it said causesperiod pain.
And they're like well, that'sprobably only part of it.
And I was like okay, well, whatare the other parts of it?
And they're like we don't know.
Yet you're like wonderful,because what they're doing is
they're putting, so they're youknow they're doing what a good
(15:01):
scientist would do and they aretesting the accepted theory.
So they are saying, okay, isischemia what's causing all
period pain?
They are putting people who arehaving dysmenorrhea, who are
having cramps, they're puttingthem in an MRI and they're
having them squeeze a littlesensor whenever they are
actively feeling pain from acramp and so what?
(15:23):
They're able to see what theuterus is actually doing and see
when they are experiencing pain.
And so if it was ischemiacausing the pain, you would
expect when the uterus contractsto line up with when they feel
pain.
And it doesn't Interestingtheories that actually the pain
(16:01):
is from other muscles in thelike abdominal muscles
contracting in anticipation ofpain or after the contraction
has already happened.
There are a lot of theoriesaround, like inflammation, that
the body can react in a way thatsends more inflammatory
mediators to that area.
But ultimately we don't knowand it probably has more to do
(16:23):
with our brain's pain processingpathways than it does with the
actual activity of the muscles.
And that was fascinating to me.
That is fascinating.
30% of menstruating peopleexperience enough period pain
(16:45):
that it is in some waydebilitating.
It keeps you from living yourday-to-day life Right.
And that's millions of people,that's 30% of menstruating
people worldwide would be about522 million people, over half a
billion people worldwide havingdebilitating pain once a month
potentially and we don't knowwhy we haven't really studied.
(17:09):
The GYRL lab is one of the onlylabs getting NIH funding, at
least right now, currently tostudy dysmenorrhea and period
pain, and so they are makingprogress, but this is progress
we should have made years ago,and it's because of what you
were talking about that there'sjust doesn't seem to be this
(17:29):
curiosity.
Prostaglandins were discoveredin, I think, the 1970s and we
stopped there.
Science said, like great, wedid it, we get it, that's what
it is, no further questions, andthat's where we stopped.
And so I'm very, very gratefuland excited that more research
is being done and more progressis being made, and I'm also
(17:50):
angry that there was not morecuriosity or interest in like
half a billion people's pain.
Speaker 1 (17:58):
Right, Well, and I think and have you experienced
this in all of the work thatyou've done that the lack of
curiosity is more so in women'sand reproductive or menstrual
health.
Like it's not.
It's been such a taboo topicfor so long and people haven't
talked about it.
I mean, think about it Like didwhen you were growing up, when
(18:20):
you had your period?
Were you outwardly excited totalk about your period?
Or was it something that youdidn't talk about and you didn't
hear other people talk about,unless you were in, like your
little friend group, you know,in middle school, and then you
would like, when did you haveyour period?
Yeah, you know.
Like I don't know why theperiod was so excited to get in
the first place.
Like, yeah, I don't know whythe period was so excited to get
(18:41):
in the first place.
Yeah, it's a sign of womanhood.
Speaker 2 (18:43):
We're also terrified to have anything happen to us
that's not quote unquote normal,yeah, and our experiences, in
anyone who gets a period, ourexperiences are so different and
it's normal to have a varietyof experiences.
Not that it's normal to be inextreme pain, not that it's okay
(19:05):
.
Right, it is very, very hard tobe 12, 13, 14, 15 and be forced
to reckon with this idea thatthere is no normal for this
experience.
It's going to happen when ithappens, you can't control it
Right.
Normal for this experience?
It's going to happen when ithappens, you can't control it,
right.
And all of your friends havedifferent experiences and
(19:29):
different things they think arenormal and that's terrifying.
And so we also are really given.
And I grew up with a veryprogressive hippie mother who
and I say that with love andadmiration who was very open
about reproductive stuff periodslike it was never a taboo issue
in our home.
And I still got the messagevery clearly from the world I
(19:51):
live in that you do not talkabout your period.
The consequences of talkingabout your period are you are
shunned, you are laughed at, youare tittered about, and so you
avoid it at all costs.
And even when we get older andwe don't consciously make that
choice.
We are trained, we areconditioned not to talk about it
(20:13):
, and it damages us because,like the only our doctors, our
gynecologists don't necessarily,I have learned do not
necessarily have accurateinformation on our health and
our bodies and what is normal orpossible and where we could get
more help.
We have no information, right,unless we are lucky enough to
(20:41):
have, you know, a doctor whodoes have good information or is
willing to look stuff up orrefer us to a specialist and not
all doctors are.
Our experiences with our periodsharms us in both
psychologically and physically,because we are isolated in our
(21:05):
pain, which, likepsychologically, gives us more
pain.
Our pain is worse because weare isolated and alone in it.
We are social animals.
Our brains have developed towant to be around other people,
to want to know we're not alone,and so if you are having pain
and your brain is going to tellyou there's something wrong, if
(21:29):
you're alone in this pain, ifyou don't know why it's
happening, that's worse, right?
So, literally, our pain isworse because we're not talking
about it, and if you think aboutwho benefits from us not
talking about our pain, it's notus.
Speaker 1 (21:44):
Nope, it's to make people less uncomfortable.
Speaker 2 (21:48):
Yeah, and not just people, it's men.
It's people who do not getperiods, and they do not.
One, talking about our painwould potentially make them
uncomfortable, because it is apart of the body that they don't
have and an experience theydon't have.
And two, being open about oursuffering and our pain would
(22:09):
force them to do something aboutit, even if that is just
accepting that we can't that.
Okay, I'm in pain, I can't showup to work today.
I can't do.
I do childcare today.
I can't pick up my mom from,like, her appointment today.
You have to do it.
And when we shut up about ourpain, when we keep it to
(22:30):
ourselves, when we just, likewhite knuckle our way through it
, that's not benefiting us,that's harming us.
That's benefiting the peoplewho rely on our labor, who rely
on our emotional, social, unpaidlabor and paid labor, and so
that's another reason that we'reencouraged not to talk about it
.
It may not be direct I'm notsuggesting that every man in
(22:52):
your life is trying to, you know, extract labor from you when
you're on your period but thatis what ends up happening when
we don't talk about our pain anddemand support when we are in
debilitating pain.
Speaker 1 (23:07):
Yeah, and it's so true.
I remember my husband and Iwere talking about in the midst
of my pain with my period andthis is when we first got
married and he went to the storeto get me tampons and pads and
and this like 90 year old womanhe's probably not 90, but like
(23:29):
older woman was like I get thattime that kind too, and he'd
forgotten that he had like somepotting soil right there with
the pads and tampons and heautomatically was like the pads
and tampons Okay, and she meantthe potting soil.
But he I was like did thatembarrass you?
I remember asking him did thatembarrass you?
It was no, that didn'tembarrass me.
(23:52):
He said I shouldn't beembarrassed because I have a
woman that has a cycle Like I'mproud of that, I'm proud that I
can do this for you.
He's like you're in pain.
But I will tell you that Imyself didn't want to even check
out pads and tampons unless andthis is like before
self-checkout was really a thing.
I would always find thecheckout that had like the
oldest woman at the register,because I didn't want to be
(24:14):
embarrassed by it and that is.
And so I think just how thatplays out with not only us as
menstruating people, but alsolike how that plays out in
society and how we getembarrassed, is not okay,
because I think it is moreharmful.
It's more we're not talkingabout the serious things and
(24:34):
that's why I think for a longtime not fully, I think this is
only a component of it whyresearch wasn't done on women,
why we don't know why we havethese cramps.
Speaker 2 (24:46):
Yeah, I think because we didn't talk about it.
It's one of those things thatif you stop and think about it
for two seconds, it makes nogoddamn sense.
No, because half the populationof the world, for at least half
of their life for potentially,you know, potentially half of
their lives is menstruating 12times a year ish.
And so why are we living in aworld where we are going through
(25:09):
these, like crazy acrobatic,you know tricks to hiding
tampons, like hiding menstrualproducts, not talking about it
in public, like going throughall of this labor to hide it?
Who's doing the work to hide it?
Us, while we are at our lowestpoint, sometimes while we are
feeling the worst, we are alsoputting in all this effort to
(25:32):
hide it or being made to feeluncomfortable about it, and it
is no sense.
And also, the species wouldn'tcontinue if we didn't menstruate
you know like it makes no sense.
And to your point about women'sbodies not being studied, I mean
that was a huge part of thepodcast as well, of like I
understood, like I kind ofintellectually like knew that
(25:56):
women were less represented inmedical studies and I vaguely
remembered that, like in thepast, there was like a whole
thing where women's bodiesweren't studied at all.
And I vaguely remembered that,like in the past, there was like
a whole thing where women'sbodies weren't studied at all.
And I was like yeah, yeah, yeah, I know, when I actually looked
into the actual history of itand the facts around it, it's
wild, like, truly wild, the likecontortions that the medical
(26:19):
and scientific industry goesinto to not study female bodies.
And part of the reason thatthey will say is that women's
bodies and women's cells, likedown to they don't use female
lab rats, no, a lot of the timebecause they say it's because of
these hormone fluctuations.
(26:39):
Oh, dear Women, female bodies,female animals have these
hormone fluctuations and thatmakes it much harder to study.
It's another factor that youknow could complicate it.
Female lab rats have like fourday hormone cycles or something
and so like, oh, you'd have toreplicate the experiment like
(27:01):
four different times to makesure that the hormone
fluctuations are not likechanging the results of the
experiment or whatever.
And so they're like we're justnot going to do it because male
you know, male lab rats, malehumans, like they don't have
these kinds of hormonefluctuations that could really
mess up the data we have hormonefluctuations.
Speaker 1 (27:21):
Right.
Speaker 2 (27:23):
So it's not only Half the people who are taking this
medication or whatever are goingto be having these hormone
fluctuations.
So like, even if it's a littlemore complicated, isn't that
effort?
That's well worth it.
And it turns out, no, not tothem.
For a long time, it was sort ofaccepted in science that
(27:44):
whatever results you got frommale rats, more male human
participants, you could justalso apply to female
participants and or female youknow female people who are going
to be taking this drug.
And it's not true.
If you are ovulating, if you arecycling, your hormone
fluctuations affect every singleorgan in your body and the way
(28:07):
that it functions.
Like I'm on an antidepressant,I'm on an SSRI.
That SSRI is the same dose allmonth, yet my hormone
fluctuations mean that it ismuch more effective in my
follicular phase than it is inmy luteal phase, which is when I
need it more, and so there arelots.
(28:28):
There are, just recently, somepushes to change some of the
dosage, and this is, by the way,this is true about cold
medicine, this is true about somany different medications that
if you take it in yourfollicular phase, it might work
very differently for you than itwill in your luteal phase,
because the vastly differentlevels of hormones affect your
(28:51):
digestion, it affects your liverand your kidney function.
It affects all these differentorgans and yet that medication
has not been tested on people atdifferent stages in their
hormone fluctuation.
So, they don't know.
It's also why women experiencea much higher rate of adverse
reaction to medication, and itdoesn't seem to matter.
(29:13):
Our quality of life and ourexperience and our level of pain
does not really seem to matterenough to science and medicine
to get them to change and changeis hard.
I have an aunt who is ascientist and she has explained
to me things that I didn't thinkof before that just starting to
include more women in clinicalstudies would make it much
(29:37):
harder to compare results tostudies done in the past with
different populations.
It would mean that you wouldhave to replicate it, which
would double the budget for alot of these studies which,
especially in today's climate,would be really hard.
But again it's like well then,what are we?
What is the point If half thepeople taking this medication
(29:57):
are going to be reacting to itdifferently?
What's the point of not doingit this way?
Speaker 1 (30:02):
Well, and it's also like not only are we lacking the
curiosity, we're also lazy inresearch, like that's the bottom
line too, is you want to getand I don't know this for 100%
certainty, but I would guessthat if you are given a certain
amount of grant funding to doresearch, you need to get that
(30:23):
research done within a specificperiod of time, or you don't
finish it.
So when you're making somethingmore complex, when you're
researching something morecomplex, you're going to need a
bigger budget, and if you don'thave that, you're just going to
go the easiest route andhopefully the best route for
that budget.
Now, I'm not saying that'sexactly what happens, but I
would have to assume there'ssome of that at play when it
(30:45):
comes to researching women'shealth.
Speaker 2 (30:47):
Right, and you know, one of the frustrating things
about digging deep into thisissue is that, you know, we want
to be mad at the doctors, right.
We want to be mad at the peoplewho are not well informed and
are not giving us theinformation that we need or
giving us the treatment that weneed.
We want to be mad at thescientists who are choosing to
do the work this way, who arechoosing not to include more
(31:09):
women participants in theseissue.
It is the definition of asystemic issue which is like
(31:29):
it's not a problem of bad actors, right, it's not a problem of
bad apples.
It's a problem of the entirestructure of our society, of our
medical industry, of ourscientific research, of our
(31:50):
scientific research.
The way that that is funded andstructured discourages and
disincentivizes all of thechanges that need to be made in
order for women to be fullyrepresented in these studies,
for these basic questions aboutour anatomy and functioning to
be answered.
And you know when you have tozoom out to really see that.
And it's incredibly frustratingbecause, short of mandates
which, like the NIH, does have amandate, it just doesn't get
(32:13):
enforced and it's very hard toenforce for including female
participants in these studies,and you know, it is hard to
imagine how we can get there,because without completely
tearing down the entire systemand starting from scratch.
I mean, this administration ispretty well along into tearing
down the entire system, but Idon't necessarily trust that it
(32:35):
will be rebuilt in a better way.
Speaker 1 (32:37):
Well, and we'll see.
I think one of the things thatI have become more aware of is
that this isn't just a US issue.
This is a worldwide issue, andthis is something that you know,
I feel like.
For me, I was completelyoblivious to the people in the
UK who are still struggling withthis, and we're all dealing
(32:59):
with a lot of the same issuesbecause, like it or not, we
share a lot of the same research, and so that's the big part of
it.
And if one country's on it,unless you're like of the same
research, and so that's the bigpart of it, and if one country's
on it, unless you're likereally wanting to research it
more, can they just don't.
Speaker 2 (33:14):
And that's so hard, and I mean it is perversely
gratifying, I think you know.
I think we look at a lot of theproblems with our healthcare in
the US and we say single payerhealthcare would solve a lot of
these problems.
But this is a problem that,like, yeah, you look at the UK
and places in Europe that have,you know, single payer health
care, that have nationalizedhealth care, and they might have
(33:35):
slightly different problems.
You know, right on par, like, Idon't think you're better off
having endometriosis in the UKthan you are in the US.
It is maybe in Switzerland orSweden or one of the Nordic
countries.
It seems like they have somestuff figured out.
(33:56):
But no, it is a worldwideproblem, in no small part
because we're all in.
All of these Western countriesare essentially based off the
same structure.
Speaker 1 (34:07):
Right, yeah, exactly Exactly.
We've talked about thechallenges and the shocks of
what you've learned doing thispodcast and kind of sifting
through, not only figuring outwhat's best for you and your
care, but also like we got totalk about this more what is one
thing that you have taken awayfrom doing the podcast, or maybe
a couple of things thatencourage you about what not
(34:30):
only you're doing, but thedirection that we can go as
people with menstrual cycles,people with endometriosis.
What encourages you most?
Speaker 2 (34:40):
Okay, I have so much to talk about.
I'm so glad you asked thisquestion because there's so much
that feels hopeless and there'sso much that feels like too big
, too much to wrap our headsaround or to do anything about.
But there are so many goodthings happening at the same
time.
One there are so manyincredibly smart, incredibly
driven people working on theseproblems.
(35:00):
The people at the GYRL lab areworking on this.
If you go to cureperiodpainorg,they are always running studies
that you can actuallyparticipate in.
Some of them are just surveysyou can fill out, and so I
highly encourage they're alwayslooking for people to
participate in these studies.
So go see if you're eligible.
Some of them are even paid.
So go, go, go, go.
(35:21):
Yes, there are people advocatingat the highest levels of
government for more researchinto endometriosis, more
research into menstrual pain,into women's health.
People who are like lifelonggovernment, people who know how
the system works I don't evenknow how it works well enough to
say, like what their jobs are,but like they're not lobbyists,
they're like doing this for thesociety, for women's health.
(35:45):
Research is doing incrediblework, so that is incredibly
hopeful, that like a few, likepeople who know more than me and
who are much more qualifiedthan me, are like.
Working on this is so, so goodto know.
A Society for Women's HealthResearch is also always looking
for more people's stories, so ifyou go to their website, you
can just write your story thereand they can ask you permission
(36:07):
to share it on their variouschannels or with Congress,
people and senators.
So that is a way that you canimmediately just like help them,
help you.
Another thing that gives me alot of hope is that, looking at
like zoomed way out, looking atthe history of women's health
and how we have been treatedthrough history, the one thing
that I see as a through line isthe more access to information
(36:32):
we have as individual peopletrying to get better healthcare,
the better off we are Right now.
If you look, before theprinting press was invented, it
was really hard to get accurateinformation about healthcare,
the way your body worked,anything like that you were
reliant on, potentially avillage wise woman or a midwife,
and that these systems ofknowledge died out.
(36:54):
And now we, at this point inour history, we have access to
more information, and morequickly than we ever have had in
our entire existence as humanbeings.
Obviously, it's a double-edgedsword, because we also have
access to all the badinformation, misinformation.
But if we can be media literate, if we know good sources, if we
(37:18):
know how to check and validateour sources, we can have access
to all the information out there.
Basically, I read a lot ofresearch papers, medical papers.
I don't understand all thewords, I Google them.
I have a friend who's a datascientist and sometimes I send
her a paper and say here's whatI think this data is saying.
Can you tell me if I'm right ornot?
(37:39):
And then she'll call me andwe'll talk about what the
difference between an averageand a mean is and I'll try to
remember my high school stats.
But we have access to thatinformation and we have access
to all of the things we need todecode that information.
And so, yeah, it's a pain inthe ass, it sucks that we have
(38:01):
to basically get amateur medicaldegrees just to care for
ourselves, but that's where weare right now.
We also have access to eachother and I think that's a
hugely important piece of thepuzzle.
I agree there are a lot ofpeople doing what are sometimes
called like women's circles justgetting together with other
(38:23):
people who are menstruating,people with uteruses, together
with other people who aremenstruating, people with
uteruses getting together ingroups from, you know, three to
a hundred, over, zoom over, likein person, in your living room,
in a local coffee shop, at abar, wherever.
I had one recently.
I think I'm going to keep doingthem, monthly, I think, and
call them clam bakes, becausethat appeals to my sense of
(38:44):
humor.
Yes, but just literally gettingtogether with a group of people
who are experiencing differentthings, going around and you
know you are going to doing itthis way, you are going to find
other people who areexperiencing things similarly to
you.
I didn't know.
You know, I invited kind of arandom group of people that I
knew to my house.
(39:05):
About 12 people showed up, Ithink.
I invited like 25, 12 showed up.
We had some wine, we had somesnacks, we went around and just
like, said what was good, whatwe're each dealing with.
Some of these people are peopleI've been close with for years.
I had no idea some of the stuffthat they were dealing with.
We ended up having a longconversation about IUDs and
(39:26):
insertion.
Oh yeah.
Speaker 1 (39:30):
And some people.
Speaker 2 (39:31):
Some people in the group had experienced an IUD
insertion where they were givenlidocaine, where they were, you
know, given topical localanesthesia, and we you know
other people in the group wereasking where did you get that?
How, like, cause, I've tried toget that and they refuse it.
And so we shared informationabout, like, which locations,
(39:52):
under which insurances coverlike, uh, local anesthesia with
IUD insertion, and people wentaway with actual actionable okay
, next time I need an IUD, likeI'm going to go to that place
because I'm it is important tome to have anesthesia, and so,
like that kind of that's anempowerment, that kind of
(40:13):
sharing of information so thatwe can get what we need, what we
deserve in terms of health care, and know that we are not alone
in dealing with this.
That is incredibly important,yeah, so those are things that
give me a ton of hope with this.
Speaker 1 (40:27):
That is incredibly important.
Yeah, so those are things thatgive me a ton of hope.
I have hope that you, thatthere are more people taking
their platform and talking aboutit and being open about it and
being vulnerable.
I think sometimes it can beoverlooked.
You know what we do.
It can be a very vulnerablething to do, because you're
talking about your healthcare Alot of times, you're talking
about your challenges andsometimes that's not always the
easiest thing to do, but I havehope that more people are
(40:50):
talking about their care,they're looking at it more,
they're advocating and they'reshowing how to advocate better
for themselves and they'redemanding more from a lot of
people, everyone that has a handin our care, and I think that
that is what's going to changethe trajectory of healthcare in
general, but women's healthcarespecifically, and so I have just
(41:14):
an immense amount of hope,given that women are tired of
becoming second-class citizensand they're speaking up and
they're saying this is not goodenough for us anymore.
Our lab values shouldn't bebased off of men's lab values.
Our lab values are our own.
We're individual humans.
We, you know, we do operatedifferently, and so talking
(41:35):
about it, bringing it to lightand putting it out there in a
place that leaves space forcriticism can be really
challenging.
So thank you for stepping intothat space and taking the
funding that you did get to dosomething like this, because
this is so important and it's soimpactful.
So thank you for doing that andthank you for sitting at the
(41:57):
table with me and talking aboutthis because Of course, it's my
pleasure.
This is how it changes.
Speaker 2 (42:02):
Yes, and I will say there is a lot of good research
out there that shows.
I forget the exact number, butyou only need about 3.5%, and
the more that we just talk toeach other about this, the
(42:28):
closer we get to that 3.5%.
And doing something you know,you don't have to go to a
physical protest Like you canwrite your congressperson about
this.
You can share your story withthe Society for Women's Health
Research.
You can write an open letter onsocial media about how dumb it
is that this is the way oursystem works.
Yes, because I think the moreyeah, completely the more open
(42:51):
we are to this, the more we justtalk one-on-one to each other,
the more awareness there is.
And we talk one-on-one topeople in our lives who don't
get periods, who don't haveuteruses, and help them
understand how dumb this systemis, that half the people on this
earth can't get adequatehealthcare or accurate
information because of the waythe system is set up.
(43:13):
You know it's a big system butlike we made it up, we can
change it.
Speaker 1 (43:18):
Right, absolutely.
And if you don't feel empoweredto say all the stats or say all
the facts, point people to theright direction, because
sometimes that's a reallyoverwhelming thing for us to do,
because we are so inundatedwithin our own things that we're
dealing with that sometimesit's hard for us to convey this
accurately.
Nate's podcast is amazingCramped.
(43:39):
If you haven't listened to ityet, go listen to it.
It's amazing.
She's a phenomenal communicator.
Love the fact that you open upthe door to so many different
conversations and things that weshould be paying attention to
more, and you're bringing insome really good evidence-based
materials as well, which I thinkis crucial to the way that we
(43:59):
approach this.
So thank you for doing that andI encourage you to go check out
cramped and it's streamingeverywhere or where's this.
Speaker 2 (44:07):
Anywhere you get your podcast and it's cramped.
C, r, a, m, p E D.
My name's Kate Helen Downey, soyou can find me on Instagram at
Kate Helen Downey, or on TikTOK at Kate is cramped.
Speaker 1 (44:20):
Love it, I love it.
Go follow her there, kate.
Thank you again so much forsitting down with me and this
has been so fun, so fun.
Until next time, everyonecontinue advocating for you and
for others.
Have you ever wondered why period cramps
happen or why we know so littleabout them?
Or maybe you felt like youcouldn't talk about periods but
weren't sure why.
In this episode, I'm joined byKate Downey, the creator of the
podcast Cramped, who dives deepinto the science, the silence
and the stigma surroundingperiod pain.
She shares what she's learned,what shocked her and why this
(00:21):
conversation matters.
You won't wanna miss this, sostick around.
Welcome to EndoBattery, where Ishare my journey with
endometriosis and chronicillness, while learning and
growing along the way.
This podcast is not asubstitute for medical advice,
but a supportive space toprovide community and valuable
information, so you never haveto face this journey alone.
(00:43):
We embrace a range ofperspectives that may not always
align with our own, believingthat open dialogue helps us grow
and gain new tools.
Join me as I share stories ofstrength, resilience and hope,
from personal experiences toexpert insights.
I'm your host, alana, and thisis IndoBattery charging our
lives when endometriosis drainsus.
(01:04):
Welcome back to EndoBattery.
Grab your cup of coffee or yourcup of tea and join me at the
table Today.
I am joined by my guest, kateDowney, who is a storyteller,
podcast powerhouse and thecreative mind behind Cramped, a
podcast investigating why periodpain is so misunderstood and
(01:25):
mistreated.
She has produced hit shows forWondery, built live podcast
events with names like MalcolmGoodwill and co-founded Caveat
NYC, where she made science andhistory hilarious and human.
Kate has a knack for makingboring things fascinating and
today she's here to talk abouthow she combined her skillset
(01:45):
and her story with the curiositysurrounding periods.
Please help me in welcomingKate Helen Downey to the table.
Thank you, kate, so much forjoining me today on this podcast
.
It is such an honor to have yousit down with me and go over
all the things that you're doing.
Thank you so much.
Speaker 2 (02:04):
Thank you so much for having me.
I'm so excited to be here, ofcourse.
Speaker 1 (02:08):
Now, this is something that I'm excited to
talk about, because you have apodcast which I think is
phenomenal.
It's called Cramped, but youdidn't start this overnight and
for no reason Can you tell ushow this all came to be and the
process it took you to get tothis point to want to do a
podcast like cramped.
Speaker 2 (02:28):
Yeah, I mean the long story is 22 years ago, when I
was 14, I got my first periodand then I got my second or
third period and it washorrifically painful.
I was in science class, I thinkin eighth grade, and started a
full body sweat.
I thought maybe like I had astomach bug or food poisoning.
(02:50):
I asked to be excused to go tothe bathroom and realized I
couldn't stand all the way up,that my whole midsection was
just completely clenched downand like twisted.
I tried to get to the bathroomand had to keep stopping in the
halls with my hand against thelocker like trying to catch my
breath, trying to stand upDidn't think I was going to make
(03:11):
it Suddenly realized like howfar it actually is to the
bathroom, started thinking likeam I going to throw up in the
middle of the hallway?
Like this is horrible.
So after I went to the bathroomand threw up, I went to the
nurse's office and I wasconvinced I was having like that
my appendix had burst, becauseI couldn't imagine what else
(03:33):
could possibly hurt this much.
Like I was a pretty healthy kid.
You know this was me at 14.
I had never experienced painlike this before, pain like this
before.
And so in my fantasy, as I'mdragging myself down the school
halls, I'm like this is what amedical emergency is.
(03:54):
This is what they talk about,this is what they describe, this
is what you see on TV.
I'm going to get to the nurse'soffice.
She's going to immediately seehow bad it is.
She's going to call anambulance.
They're going to take me to thehospital and do emergency
surgery.
And then I'm going to wake upand a doctor is going to explain
to me like what crazy thingwent wrong inside of my body to
cause this much pain.
I was like I just have to get tothe nurse's office.
I just have to get to thenurse's office.
(04:15):
And when I got there, she askedme if I she knows.
She asked me what was wrong.
It was like oh, I've thrown upa couple of times.
It hurts so much.
You know was describing what wasgoing on was still sweating,
full body sweat couldn't standup straight.
She goes oh, do you have yourperiod?
I was like, yeah, but kind oflike what does that have to do
with anything?
And she was like oh well,here's a hot water bottle.
(04:38):
You know you can lie on the cotfor a little while, but like
you do have to go back to classeventually and I was like hold
on, there must be somemisunderstanding.
Like are you?
Like?
No, call an ambulance.
And so instead I just I lay onthis cot with a hot water bottle
and got up every 10 minutes tothrow up in her bathroom until
(04:58):
she finally called my mom andwas like, yeah, I guess you're
not going back to class.
She called my parents.
My mom came to get me.
She was very concerned becausemy mom had never had these kinds
of cramps before, so she didwhat she could for me.
After we got home, I kind ofpassed out from the pain and
when I woke up the cramps weregone.
My mom took me to thegynecologist like a week later
(05:19):
and the gynecologist explainedto me that some women just have
very bad cramps and it wouldprobably get better when I had
my first baby, which issomething that is not super
helpful to say to a 14-year-old.
Speaker 1 (05:32):
Yeah, and that's like the last thing you want to hear
when you're 14.
Speaker 2 (05:36):
Right.
And so the rest of my adultlife, the rest of my
menstruating life, up until lastyear, I went to doctor after
doctor.
I switched insurances a lot inmy 20s.
I went to doctors in ruralMaine, I went to doctors in
Boston, where I went to college.
I went to doctors in New York,where I lived for almost a
decade, and I went to doctors inLA where I moved about five
(05:57):
years ago, and no doctor couldgive me no gynecologist.
Nobody could give me anexplanation of what was
happening.
When my periods hurt that bad,when my cramps got so bad that I
was throwing up, I ended up inemergency rooms with doctors who
tried to give me IVanti-nauseas.
That did not work, even when Iwould explain to them.
(06:18):
I have horrible cramps.
This is what happens when mycramps get really bad.
They did not believe me.
I did my own research, broughtmy research to the doctors that
I was seeing, said hey, could itbe endo?
Could it be adenomyosis?
Could it be PCOS?
Could it be all these things?
And every time I was told no,it couldn't be that, because
blank.
No, it couldn't be that.
(06:39):
It couldn't be endometriosis,because otherwise you'd have
very heavy periods and I havevery light periods.
And no, it can't beendometriosis, because otherwise
, because if it was, that youwould be having pain throughout
your cycle, not just during yourperiod.
Nope, turns out it can totallyjust be on your period, anyway,
and so on and so forth.
And so it meant that I got tothe age of 36 with no diagnosis,
(07:00):
no effective treatment, and Ikind of got sick of it.
I ended up, in the course of myweird meandering career, I
became a podcast producer and soI decided this is something I
want to do a podcast about.
I want to find out for once andfor all what is wrong with me,
why I've been in unexplained anduntreated pain for 22 years.
(07:24):
That, after talking to peopleabout it, like as I got older, I
realized is actually notuncommon.
It's very common to be havingextreme, debilitating pain
during your period.
And yet why did every doctorlook at me like I was some
medical mystery?
So that kind of cognitivedissonance always interested me
(07:45):
and always made me really wantto like, dig into that, like
what could possibly be going onRight.
Plus, I wanted a diagnosis andtreatment Right, and so I got a
grant from the Simons Foundationin New York City and I was able
to make 10 episodes of a seriescalled Cramped where I dug into
(08:11):
all of my questions.
That seemed like really basicquestions and, of course, once
you start digging into them, itturns out they're not so basic.
Questions like, hey, why docramps hurt?
Like what is actually cramping,what is actually hurting.
They seem really basic, seemlike there'd be simple answers.
There aren't.
Questions like why don't doctorsknow what I'm talking about
when I bring them my symptoms?
Seems like there should be aneasy answer for that.
(08:34):
Seems like it should be simple.
It's not.
It turns out there's a deephistory.
So that's really what I wentinto it trying to find out.
That was about a year ago.
I started working on it.
Over the course of the year Iwent to see some specialists,
which were expensive, but Idecided to invest in that
finally and I got diagnosed withendometriosis as part of my
(08:56):
constellation of diagnoses,because I feel like, as
endometriosis is becoming moreprevalent in conversation, it
still seems to be largelyignored in the medical system
when it comes to general GYN orfamily care.
Speaker 1 (09:25):
And again, this is much, much deeper than I think
any of us really understood whenwe first started exploring this
.
But what's interesting aboutyou is that you even mentioned
like my periods aren't heavy,but I'm in so much pain.
But the curiosity stopped atthat point, it sounds like, and
that's where your curiosity tookyou to where you are now with
your podcast and what you'redoing and discovering about
periods and discovering aboutwomen's health and menstrual
(09:48):
health and all of those thingsthat we deal with day in and day
out, but no one's talking aboutit.
And then all the nuances to theperiod why are they painful?
Why aren't we talking aboutthese?
Pain is one thing anddiscomfort's another.
How do we differentiate that?
And so I feel like this podcasthas been so needed.
(10:10):
So thank you for doing it andexploring that.
I encourage everyone to listento it because it's incredible
and you do an amazing job at it.
But I think what it highlightsmore is that there's different
facets of your period.
What is one thing from yourpodcast that you have learned
that just kind of blew your mind?
(10:30):
I'm sure there's a lot, butwhat is maybe one or two things
that you have taken away fromhaving your podcast.
That just was like.
I never even would have thoughtof that.
Speaker 2 (10:41):
Oh, yeah, okay.
So there's two things that cometo mind immediately that, for
me, just blew my mind right away.
One was in trying to answer thequestion what is actually
hurting when I have cramps, whatare the mechanics of this pain,
and why do sometimes I getquote unquote regular cramps
(11:03):
that are like unpleasant,uncomfortable but not
debilitating, and then sometimesI get what I call death cramps,
which are excruciating,debilitating, they make me throw
up, they make me pass out, andso what?
Is something different actuallyphysically happening, or is it
just regular cramps, like turnedup to a 15?
(11:24):
You know, I had this question.
Doctors couldn't answer it forme, so I went to a lab in
Evanston, illinois called theGYRL lab, the gynecological
research lab, and they arespecifically studying
dysmenorrhea, which is themedical term for severe period
pain, and they're doing thingsthat I thought were like very
(11:48):
basic research questions thatyou would think at this point in
2025, had been answered in the60s or 70s, right, but they
haven't, and so I think.
So what I learned is that ifyou Google, you know why do
period cramps hurt?
You're going to get anexplanation that tells you about
(12:11):
prostaglandins, which aremessengers, kind of like
hormones that are released whenyour progesterone dips,
basically your progesterone dipstelling your body like, okay,
time to have a period, thatcauses prostaglandins to get
released.
The prostaglandins bind withreceptors in the muscle of the
uterus and tell the uterus tosqueeze or contract.
(12:31):
That is what like squeezes theblood out of your uterus and the
uterine lining and when yourmuscle is squeezing that can
hurt, it can get sore.
It can also pull on the musclesin your back, your pelvic floor
muscles.
They kind of compensate forthat squeezing.
The prostaglandins also floodinto your system.
(12:52):
They don't just affect youruterus, they also affect other
muscles in your pelvis, but theyalso affect things like your
colon and your intestine, whichis why you get period poops,
which are amazing, yes, yes.
And so that process justlearning about that in my own
research, I was like oh, okay,and in my research they say the
(13:12):
pain comes from something calledischemia, which is when a
muscle squeezes so tightly forso long that oxygenated blood
can't get to the muscle fibersand the muscle fibers will die
if they don't get oxygenatedblood.
So they basically try to getyour attention and experience
pain.
They say like this is you know?
(13:33):
If it happens in your arm oryour leg it's called a Charlie
horse, right, that's ischemia.
And so you're essentiallygetting a Charlie horse in your
uterus and that's the widelyaccepted cause of all
dysmenorrhea.
All period pain is like it'sischemia from the prostaglandins
telling your muscle to squeeze,right, I was like, okay, I
(13:57):
didn't know that before.
Like, I knew the uterus wassqueezing to get blood out, but
I didn't really know all thedetails behind it.
That makes sense.
So I guess my death cramps isjust like too many
prostaglandins, like so muchischemia that it's like locking
up those muscles and causing somuch pain.
But like I still don't reallyunderstand why it happens
sometimes and not other times,right.
(14:19):
So I go and visit this lab and Ilike, lay, I go to the lead
researchers and interview themand I say, okay, here's how I
understand period pain to work.
Is that right?
And they're like no, you'relike.
I was like what?
Like?
Because that's literally whatevery textbook, every research
(14:39):
paper that I was able to findlike on in my own research
that's what it said causesperiod pain.
And they're like well, that'sprobably only part of it.
And I was like okay, well, whatare the other parts of it?
And they're like we don't know.
Yet you're like wonderful,because what they're doing is
they're putting, so they're youknow they're doing what a good
(15:01):
scientist would do and they aretesting the accepted theory.
So they are saying, okay, isischemia what's causing all
period pain?
They are putting people who arehaving dysmenorrhea, who are
having cramps, they're puttingthem in an MRI and they're
having them squeeze a littlesensor whenever they are
actively feeling pain from acramp and so what?
(15:23):
They're able to see what theuterus is actually doing and see
when they are experiencing pain.
And so if it was ischemiacausing the pain, you would
expect when the uterus contractsto line up with when they feel
pain.
And it doesn't Interestingtheories that actually the pain
(16:01):
is from other muscles in thelike abdominal muscles
contracting in anticipation ofpain or after the contraction
has already happened.
There are a lot of theoriesaround, like inflammation, that
the body can react in a way thatsends more inflammatory
mediators to that area.
But ultimately we don't knowand it probably has more to do
(16:23):
with our brain's pain processingpathways than it does with the
actual activity of the muscles.
And that was fascinating to me.
That is fascinating.
30% of menstruating peopleexperience enough period pain
(16:45):
that it is in some waydebilitating.
It keeps you from living yourday-to-day life Right.
And that's millions of people,that's 30% of menstruating
people worldwide would be about522 million people, over half a
billion people worldwide havingdebilitating pain once a month
potentially and we don't knowwhy we haven't really studied.
(17:09):
The GYRL lab is one of the onlylabs getting NIH funding, at
least right now, currently tostudy dysmenorrhea and period
pain, and so they are makingprogress, but this is progress
we should have made years ago,and it's because of what you
were talking about that there'sjust doesn't seem to be this
(17:29):
curiosity.
Prostaglandins were discoveredin, I think, the 1970s and we
stopped there.
Science said, like great, wedid it, we get it, that's what
it is, no further questions, andthat's where we stopped.
And so I'm very, very gratefuland excited that more research
is being done and more progressis being made, and I'm also
(17:50):
angry that there was not morecuriosity or interest in like
half a billion people's pain.
Speaker 1 (17:58):
Right, Well, and I think and have you experienced
this in all of the work thatyou've done that the lack of
curiosity is more so in women'sand reproductive or menstrual
health.
Like it's not.
It's been such a taboo topicfor so long and people haven't
talked about it.
I mean, think about it Like didwhen you were growing up, when
(18:20):
you had your period?
Were you outwardly excited totalk about your period?
Or was it something that youdidn't talk about and you didn't
hear other people talk about,unless you were in, like your
little friend group, you know,in middle school, and then you
would like, when did you haveyour period?
Yeah, you know.
Like I don't know why theperiod was so excited to get in
the first place.
Like, yeah, I don't know whythe period was so excited to get
(18:41):
in the first place.
Yeah, it's a sign of womanhood.
Speaker 2 (18:43):
We're also terrified to have anything happen to us
that's not quote unquote normal,yeah, and our experiences, in
anyone who gets a period, ourexperiences are so different and
it's normal to have a varietyof experiences.
Not that it's normal to be inextreme pain, not that it's okay
(19:05):
.
Right, it is very, very hard tobe 12, 13, 14, 15 and be forced
to reckon with this idea thatthere is no normal for this
experience.
It's going to happen when ithappens, you can't control it
Right.
Normal for this experience?
It's going to happen when ithappens, you can't control it,
right.
And all of your friends havedifferent experiences and
(19:29):
different things they think arenormal and that's terrifying.
And so we also are really given.
And I grew up with a veryprogressive hippie mother who
and I say that with love andadmiration who was very open
about reproductive stuff periodslike it was never a taboo issue
in our home.
And I still got the messagevery clearly from the world I
(19:51):
live in that you do not talkabout your period.
The consequences of talkingabout your period are you are
shunned, you are laughed at, youare tittered about, and so you
avoid it at all costs.
And even when we get older andwe don't consciously make that
choice.
We are trained, we areconditioned not to talk about it
(20:13):
, and it damages us because,like the only our doctors, our
gynecologists don't necessarily,I have learned do not
necessarily have accurateinformation on our health and
our bodies and what is normal orpossible and where we could get
more help.
We have no information, right,unless we are lucky enough to
(20:41):
have, you know, a doctor whodoes have good information or is
willing to look stuff up orrefer us to a specialist and not
all doctors are.
Our experiences with our periodsharms us in both
psychologically and physically,because we are isolated in our
(21:05):
pain, which, likepsychologically, gives us more
pain.
Our pain is worse because weare isolated and alone in it.
We are social animals.
Our brains have developed towant to be around other people,
to want to know we're not alone,and so if you are having pain
and your brain is going to tellyou there's something wrong, if
(21:29):
you're alone in this pain, ifyou don't know why it's
happening, that's worse, right?
So, literally, our pain isworse because we're not talking
about it, and if you think aboutwho benefits from us not
talking about our pain, it's notus.
Speaker 1 (21:44):
Nope, it's to make people less uncomfortable.
Speaker 2 (21:48):
Yeah, and not just people, it's men.
It's people who do not getperiods, and they do not.
One, talking about our painwould potentially make them
uncomfortable, because it is apart of the body that they don't
have and an experience theydon't have.
And two, being open about oursuffering and our pain would
(22:09):
force them to do something aboutit, even if that is just
accepting that we can't that.
Okay, I'm in pain, I can't showup to work today.
I can't do.
I do childcare today.
I can't pick up my mom from,like, her appointment today.
You have to do it.
And when we shut up about ourpain, when we keep it to
(22:30):
ourselves, when we just, likewhite knuckle our way through it
, that's not benefiting us,that's harming us.
That's benefiting the peoplewho rely on our labor, who rely
on our emotional, social, unpaidlabor and paid labor, and so
that's another reason that we'reencouraged not to talk about it
.
It may not be direct I'm notsuggesting that every man in
(22:52):
your life is trying to, you know, extract labor from you when
you're on your period but thatis what ends up happening when
we don't talk about our pain anddemand support when we are in
debilitating pain.
Speaker 1 (23:07):
Yeah, and it's so true.
I remember my husband and Iwere talking about in the midst
of my pain with my period andthis is when we first got
married and he went to the storeto get me tampons and pads and
and this like 90 year old womanhe's probably not 90, but like
(23:29):
older woman was like I get thattime that kind too, and he'd
forgotten that he had like somepotting soil right there with
the pads and tampons and heautomatically was like the pads
and tampons Okay, and she meantthe potting soil.
But he I was like did thatembarrass you?
I remember asking him did thatembarrass you?
It was no, that didn'tembarrass me.
(23:52):
He said I shouldn't beembarrassed because I have a
woman that has a cycle Like I'mproud of that, I'm proud that I
can do this for you.
He's like you're in pain.
But I will tell you that Imyself didn't want to even check
out pads and tampons unless andthis is like before
self-checkout was really a thing.
I would always find thecheckout that had like the
oldest woman at the register,because I didn't want to be
(24:14):
embarrassed by it and that is.
And so I think just how thatplays out with not only us as
menstruating people, but alsolike how that plays out in
society and how we getembarrassed, is not okay,
because I think it is moreharmful.
It's more we're not talkingabout the serious things and
(24:34):
that's why I think for a longtime not fully, I think this is
only a component of it whyresearch wasn't done on women,
why we don't know why we havethese cramps.
Speaker 2 (24:46):
Yeah, I think because we didn't talk about it.
It's one of those things thatif you stop and think about it
for two seconds, it makes nogoddamn sense.
No, because half the populationof the world, for at least half
of their life for potentially,you know, potentially half of
their lives is menstruating 12times a year ish.
And so why are we living in aworld where we are going through
(25:09):
these, like crazy acrobatic,you know tricks to hiding
tampons, like hiding menstrualproducts, not talking about it
in public, like going throughall of this labor to hide it?
Who's doing the work to hide it?
Us, while we are at our lowestpoint, sometimes while we are
feeling the worst, we are alsoputting in all this effort to
(25:32):
hide it or being made to feeluncomfortable about it, and it
is no sense.
And also, the species wouldn'tcontinue if we didn't menstruate
you know like it makes no sense.
And to your point about women'sbodies not being studied, I mean
that was a huge part of thepodcast as well, of like I
understood, like I kind ofintellectually like knew that
(25:56):
women were less represented inmedical studies and I vaguely
remembered that, like in thepast, there was like a whole
thing where women's bodiesweren't studied at all.
And I vaguely remembered that,like in the past, there was like
a whole thing where women'sbodies weren't studied at all.
And I was like yeah, yeah, yeah, I know, when I actually looked
into the actual history of itand the facts around it, it's
wild, like, truly wild, the likecontortions that the medical
(26:19):
and scientific industry goesinto to not study female bodies.
And part of the reason thatthey will say is that women's
bodies and women's cells, likedown to they don't use female
lab rats, no, a lot of the timebecause they say it's because of
these hormone fluctuations.
(26:39):
Oh, dear Women, female bodies,female animals have these
hormone fluctuations and thatmakes it much harder to study.
It's another factor that youknow could complicate it.
Female lab rats have like fourday hormone cycles or something
and so like, oh, you'd have toreplicate the experiment like
(27:01):
four different times to makesure that the hormone
fluctuations are not likechanging the results of the
experiment or whatever.
And so they're like we're justnot going to do it because male
you know, male lab rats, malehumans, like they don't have
these kinds of hormonefluctuations that could really
mess up the data we have hormonefluctuations.
Speaker 1 (27:21):
Right.
Speaker 2 (27:23):
So it's not only Half the people who are taking this
medication or whatever are goingto be having these hormone
fluctuations.
So like, even if it's a littlemore complicated, isn't that
effort?
That's well worth it.
And it turns out, no, not tothem.
For a long time, it was sort ofaccepted in science that
(27:44):
whatever results you got frommale rats, more male human
participants, you could justalso apply to female
participants and or female youknow female people who are going
to be taking this drug.
And it's not true.
If you are ovulating, if you arecycling, your hormone
fluctuations affect every singleorgan in your body and the way
(28:07):
that it functions.
Like I'm on an antidepressant,I'm on an SSRI.
That SSRI is the same dose allmonth, yet my hormone
fluctuations mean that it ismuch more effective in my
follicular phase than it is inmy luteal phase, which is when I
need it more, and so there arelots.
(28:28):
There are, just recently, somepushes to change some of the
dosage, and this is, by the way,this is true about cold
medicine, this is true about somany different medications that
if you take it in yourfollicular phase, it might work
very differently for you than itwill in your luteal phase,
because the vastly differentlevels of hormones affect your
(28:51):
digestion, it affects your liverand your kidney function.
It affects all these differentorgans and yet that medication
has not been tested on people atdifferent stages in their
hormone fluctuation.
So, they don't know.
It's also why women experiencea much higher rate of adverse
reaction to medication, and itdoesn't seem to matter.
(29:13):
Our quality of life and ourexperience and our level of pain
does not really seem to matterenough to science and medicine
to get them to change and changeis hard.
I have an aunt who is ascientist and she has explained
to me things that I didn't thinkof before that just starting to
include more women in clinicalstudies would make it much
(29:37):
harder to compare results tostudies done in the past with
different populations.
It would mean that you wouldhave to replicate it, which
would double the budget for alot of these studies which,
especially in today's climate,would be really hard.
But again it's like well then,what are we?
What is the point If half thepeople taking this medication
(29:57):
are going to be reacting to itdifferently?
What's the point of not doingit this way?
Speaker 1 (30:02):
Well, and it's also like not only are we lacking the
curiosity, we're also lazy inresearch, like that's the bottom
line too, is you want to getand I don't know this for 100%
certainty, but I would guessthat if you are given a certain
amount of grant funding to doresearch, you need to get that
(30:23):
research done within a specificperiod of time, or you don't
finish it.
So when you're making somethingmore complex, when you're
researching something morecomplex, you're going to need a
bigger budget, and if you don'thave that, you're just going to
go the easiest route andhopefully the best route for
that budget.
Now, I'm not saying that'sexactly what happens, but I
would have to assume there'ssome of that at play when it
(30:45):
comes to researching women'shealth.
Speaker 2 (30:47):
Right, and you know, one of the frustrating things
about digging deep into thisissue is that, you know, we want
to be mad at the doctors, right.
We want to be mad at the peoplewho are not well informed and
are not giving us theinformation that we need or
giving us the treatment that weneed.
We want to be mad at thescientists who are choosing to
do the work this way, who arechoosing not to include more
(31:09):
women participants in theseissue.
It is the definition of asystemic issue which is like
(31:29):
it's not a problem of bad actors, right, it's not a problem of
bad apples.
It's a problem of the entirestructure of our society, of our
medical industry, of ourscientific research, of our
(31:50):
scientific research.
The way that that is funded andstructured discourages and
disincentivizes all of thechanges that need to be made in
order for women to be fullyrepresented in these studies,
for these basic questions aboutour anatomy and functioning to
be answered.
And you know when you have tozoom out to really see that.
And it's incredibly frustratingbecause, short of mandates
which, like the NIH, does have amandate, it just doesn't get
(32:13):
enforced and it's very hard toenforce for including female
participants in these studies,and you know, it is hard to
imagine how we can get there,because without completely
tearing down the entire systemand starting from scratch.
I mean, this administration ispretty well along into tearing
down the entire system, but Idon't necessarily trust that it
(32:35):
will be rebuilt in a better way.
Speaker 1 (32:37):
Well, and we'll see.
I think one of the things thatI have become more aware of is
that this isn't just a US issue.
This is a worldwide issue, andthis is something that you know,
I feel like.
For me, I was completelyoblivious to the people in the
UK who are still struggling withthis, and we're all dealing
(32:59):
with a lot of the same issuesbecause, like it or not, we
share a lot of the same research, and so that's the big part of
it.
And if one country's on it,unless you're like of the same
research, and so that's the bigpart of it, and if one country's
on it, unless you're likereally wanting to research it
more, can they just don't.
Speaker 2 (33:14):
And that's so hard, and I mean it is perversely
gratifying, I think you know.
I think we look at a lot of theproblems with our healthcare in
the US and we say single payerhealthcare would solve a lot of
these problems.
But this is a problem that,like, yeah, you look at the UK
and places in Europe that have,you know, single payer health
care, that have nationalizedhealth care, and they might have
(33:35):
slightly different problems.
You know, right on par, like, Idon't think you're better off
having endometriosis in the UKthan you are in the US.
It is maybe in Switzerland orSweden or one of the Nordic
countries.
It seems like they have somestuff figured out.
(33:56):
But no, it is a worldwideproblem, in no small part
because we're all in.
All of these Western countriesare essentially based off the
same structure.
Speaker 1 (34:07):
Right, yeah, exactly Exactly.
We've talked about thechallenges and the shocks of
what you've learned doing thispodcast and kind of sifting
through, not only figuring outwhat's best for you and your
care, but also like we got totalk about this more what is one
thing that you have taken awayfrom doing the podcast, or maybe
a couple of things thatencourage you about what not
(34:30):
only you're doing, but thedirection that we can go as
people with menstrual cycles,people with endometriosis.
What encourages you most?
Speaker 2 (34:40):
Okay, I have so much to talk about.
I'm so glad you asked thisquestion because there's so much
that feels hopeless and there'sso much that feels like too big
, too much to wrap our headsaround or to do anything about.
But there are so many goodthings happening at the same
time.
One there are so manyincredibly smart, incredibly
driven people working on theseproblems.
(35:00):
The people at the GYRL lab areworking on this.
If you go to cureperiodpainorg,they are always running studies
that you can actuallyparticipate in.
Some of them are just surveysyou can fill out, and so I
highly encourage they're alwayslooking for people to
participate in these studies.
So go see if you're eligible.
Some of them are even paid.
So go, go, go, go.
(35:21):
Yes, there are people advocatingat the highest levels of
government for more researchinto endometriosis, more
research into menstrual pain,into women's health.
People who are like lifelonggovernment, people who know how
the system works I don't evenknow how it works well enough to
say, like what their jobs are,but like they're not lobbyists,
they're like doing this for thesociety, for women's health.
(35:45):
Research is doing incrediblework, so that is incredibly
hopeful, that like a few, likepeople who know more than me and
who are much more qualifiedthan me, are like.
Working on this is so, so goodto know.
A Society for Women's HealthResearch is also always looking
for more people's stories, so ifyou go to their website, you
can just write your story thereand they can ask you permission
(36:07):
to share it on their variouschannels or with Congress,
people and senators.
So that is a way that you canimmediately just like help them,
help you.
Another thing that gives me alot of hope is that, looking at
like zoomed way out, looking atthe history of women's health
and how we have been treatedthrough history, the one thing
that I see as a through line isthe more access to information
(36:32):
we have as individual peopletrying to get better healthcare,
the better off we are Right now.
If you look, before theprinting press was invented, it
was really hard to get accurateinformation about healthcare,
the way your body worked,anything like that you were
reliant on, potentially avillage wise woman or a midwife,
and that these systems ofknowledge died out.
(36:54):
And now we, at this point inour history, we have access to
more information, and morequickly than we ever have had in
our entire existence as humanbeings.
Obviously, it's a double-edgedsword, because we also have
access to all the badinformation, misinformation.
But if we can be media literate, if we know good sources, if we
(37:18):
know how to check and validateour sources, we can have access
to all the information out there.
Basically, I read a lot ofresearch papers, medical papers.
I don't understand all thewords, I Google them.
I have a friend who's a datascientist and sometimes I send
her a paper and say here's whatI think this data is saying.
Can you tell me if I'm right ornot?
(37:39):
And then she'll call me andwe'll talk about what the
difference between an averageand a mean is and I'll try to
remember my high school stats.
But we have access to thatinformation and we have access
to all of the things we need todecode that information.
And so, yeah, it's a pain inthe ass, it sucks that we have
(38:01):
to basically get amateur medicaldegrees just to care for
ourselves, but that's where weare right now.
We also have access to eachother and I think that's a
hugely important piece of thepuzzle.
I agree there are a lot ofpeople doing what are sometimes
called like women's circles justgetting together with other
(38:23):
people who are menstruating,people with uteruses, together
with other people who aremenstruating, people with
uteruses getting together ingroups from, you know, three to
a hundred, over, zoom over, likein person, in your living room,
in a local coffee shop, at abar, wherever.
I had one recently.
I think I'm going to keep doingthem, monthly, I think, and
call them clam bakes, becausethat appeals to my sense of
(38:44):
humor.
Yes, but just literally gettingtogether with a group of people
who are experiencing differentthings, going around and you
know you are going to doing itthis way, you are going to find
other people who areexperiencing things similarly to
you.
I didn't know.
You know, I invited kind of arandom group of people that I
knew to my house.
(39:05):
About 12 people showed up, Ithink.
I invited like 25, 12 showed up.
We had some wine, we had somesnacks, we went around and just
like, said what was good, whatwe're each dealing with.
Some of these people are peopleI've been close with for years.
I had no idea some of the stuffthat they were dealing with.
We ended up having a longconversation about IUDs and
(39:26):
insertion.
Oh yeah.
Speaker 1 (39:30):
And some people.
Speaker 2 (39:31):
Some people in the group had experienced an IUD
insertion where they were givenlidocaine, where they were, you
know, given topical localanesthesia, and we you know
other people in the group wereasking where did you get that?
How, like, cause, I've tried toget that and they refuse it.
And so we shared informationabout, like, which locations,
(39:52):
under which insurances coverlike, uh, local anesthesia with
IUD insertion, and people wentaway with actual actionable okay
, next time I need an IUD, likeI'm going to go to that place
because I'm it is important tome to have anesthesia, and so,
like that kind of that's anempowerment, that kind of
(40:13):
sharing of information so thatwe can get what we need, what we
deserve in terms of health care, and know that we are not alone
in dealing with this.
That is incredibly important,yeah, so those are things that
give me a ton of hope with this.
Speaker 1 (40:27):
That is incredibly important.
Yeah, so those are things thatgive me a ton of hope.
I have hope that you, thatthere are more people taking
their platform and talking aboutit and being open about it and
being vulnerable.
I think sometimes it can beoverlooked.
You know what we do.
It can be a very vulnerablething to do, because you're
talking about your healthcare Alot of times, you're talking
about your challenges andsometimes that's not always the
easiest thing to do, but I havehope that more people are
(40:50):
talking about their care,they're looking at it more,
they're advocating and they'reshowing how to advocate better
for themselves and they'redemanding more from a lot of
people, everyone that has a handin our care, and I think that
that is what's going to changethe trajectory of healthcare in
general, but women's healthcarespecifically, and so I have just
(41:14):
an immense amount of hope,given that women are tired of
becoming second-class citizensand they're speaking up and
they're saying this is not goodenough for us anymore.
Our lab values shouldn't bebased off of men's lab values.
Our lab values are our own.
We're individual humans.
We, you know, we do operatedifferently, and so talking
(41:35):
about it, bringing it to lightand putting it out there in a
place that leaves space forcriticism can be really
challenging.
So thank you for stepping intothat space and taking the
funding that you did get to dosomething like this, because
this is so important and it's soimpactful.
So thank you for doing that andthank you for sitting at the
(41:57):
table with me and talking aboutthis because Of course, it's my
pleasure.
This is how it changes.
Speaker 2 (42:02):
Yes, and I will say there is a lot of good research
out there that shows.
I forget the exact number, butyou only need about 3.5%, and
the more that we just talk toeach other about this, the
(42:28):
closer we get to that 3.5%.
And doing something you know,you don't have to go to a
physical protest Like you canwrite your congressperson about
this.
You can share your story withthe Society for Women's Health
Research.
You can write an open letter onsocial media about how dumb it
is that this is the way oursystem works.
Yes, because I think the moreyeah, completely the more open
(42:51):
we are to this, the more we justtalk one-on-one to each other,
the more awareness there is.
And we talk one-on-one topeople in our lives who don't
get periods, who don't haveuteruses, and help them
understand how dumb this systemis, that half the people on this
earth can't get adequatehealthcare or accurate
information because of the waythe system is set up.
(43:13):
You know it's a big system butlike we made it up, we can
change it.
Speaker 1 (43:18):
Right, absolutely.
And if you don't feel empoweredto say all the stats or say all
the facts, point people to theright direction, because
sometimes that's a reallyoverwhelming thing for us to do,
because we are so inundatedwithin our own things that we're
dealing with that sometimesit's hard for us to convey this
accurately.
Nate's podcast is amazingCramped.
(43:39):
If you haven't listened to ityet, go listen to it.
It's amazing.
She's a phenomenal communicator.
Love the fact that you open upthe door to so many different
conversations and things that weshould be paying attention to
more, and you're bringing insome really good evidence-based
materials as well, which I thinkis crucial to the way that we
(43:59):
approach this.
So thank you for doing that andI encourage you to go check out
cramped and it's streamingeverywhere or where's this.
Speaker 2 (44:07):
Anywhere you get your podcast and it's cramped.
C, r, a, m, p E D.
My name's Kate Helen Downey, soyou can find me on Instagram at
Kate Helen Downey, or on TikTOK at Kate is cramped.
Speaker 1 (44:20):
Love it, I love it.
Go follow her there, kate.
Thank you again so much forsitting down with me and this
has been so fun, so fun.
Until next time, everyonecontinue advocating for you and
for others.
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