Episode Transcript
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level. I.
1:16
Have an answer unless you I'm
1:18
bird. A few
1:21
months ago I visited the Finds Dean Institute.
1:23
For medical research. On Long Island.
1:25
I was there because I wanted to
1:27
see something called the Rose Steady and
1:29
to meet people like Amberley gear. So
1:31
I want is just introduce myself. So
1:33
I'm one of the coordinators for the
1:36
study. I'm so I speak for all
1:38
of the participants from and Roma to
1:40
consenting to sample collection and everything in
1:42
between. The samples that Amber mentioned are
1:44
are symbols of menstrual. fluids are just
1:46
depends on the study. Use Cup sir
1:48
special pads to collect their fluid and
1:50
then they ship it to this lab
1:53
and special meal in boxes. And
1:55
I had timed my visit to see one of
1:57
those boxes come in size they want to show.
2:00
We receive the care earlier this morning if you'd
2:02
like to see one, if that's okay, Okay,
2:05
animal suffer as fine. Oh
2:07
no, I was. Loves. Pies.
2:12
I was a wizard of. Oz.
2:15
I really was just trying to
2:18
make. A. Silly Burrow A joke here.
2:20
Like the kind of thing that. Sometimes.
2:22
Loosens people up a little bit. I
2:25
as a traveled over an hour
2:27
on trains and. Buses to see
2:29
the sample. An insider Be
2:31
really obvious that I was
2:34
excited independent goofing around. But
2:37
instead both Amber and one of
2:39
directors of the study the some
2:41
an increase the Mets post them
2:43
took me completely. At my word here
2:45
and also took a lot of pains. To
2:47
acknowledge that any feelings that. I
2:49
might have about menstrual fluid are perfectly
2:52
valid. We have all. Been. On that
2:54
we have responses of all times as
2:56
we assess his sleep. Not another lotta
2:58
nothing is a weird here as explain.
3:00
These are all very normal things so
3:02
we're very open about it. Only Schilling
3:04
isn't talking about it so of our
3:06
know I like I. Was
3:10
on board as I say. Amber.
3:12
Very quickly moved on and pulled over
3:14
this cardboard shipping box to show me.
3:16
Everyone. Receives the kit licenses, And
3:18
soy sauce. And much as he pulled out the
3:20
sort of. To. Full of
3:23
raspberry red liquid that I had come
3:25
to see and it's a pretty great
3:27
sample. There's a few small plots and
3:29
there's I couldn't stop thinking about my.
3:32
Glib. Little joke and hurt.
3:34
very com reaction to it.
3:36
I. Really was pretty comfortable with as
3:39
I'll have mental fluid like I'm
3:41
not a particularly squeamish person And
3:43
also I was there for work.
3:45
So. Their reaction surprise me. If
3:48
anything, I assumed. They would be. Desensitized
3:51
to the taboos around menstrual fluid.
3:54
But. They're senate careful consideration
3:56
of my feelings. The
3:58
made me realize. System. The other
4:00
stores around menstrual fluid. But.
4:02
Also how much researchers still
4:04
have to wrestle with that
4:07
stigma? So.
4:10
This is unexplainable. I'm bird think
4:12
attend. And this is the second episode.
4:14
Of I series, The Bleeding Edge.
4:16
This week we're looking at the scientists
4:19
that the race that he for collecting
4:21
these isles events to fluid because
4:23
they want to figure out if
4:25
menstrual fluid to be used to detect
4:27
a widespread and painful disease called
4:29
endometriosis. It's. A
4:31
pretty fascinating idea and to potentially
4:34
help millions of people. but it's
4:36
been challenging because from the very
4:38
beginning the stigma around Missouri fluid
4:40
has safe. The. Work that these researchers
4:42
if. You're my
4:44
teens once a month because the
4:47
A period. Ah, what a disaster.
4:49
Silly tells his strength. unexplainable, contains
4:51
the way you feel about your
4:53
period. He would
4:55
think something is wonderful.
4:57
Sassy, apologising, smart. Or
5:00
that something. Remember to the ceiling.
5:03
And a simple it could actually. Change the
5:05
way you feel about your period. For.
5:09
Could see met this whole project started about
5:11
a decade ago. I had been
5:14
working in the area and
5:16
Dimitrios is an studying inflammation
5:18
related to and Demetrius. Enemy
5:20
to Isis is a disease where tissue that's a
5:22
lot like the tissue. The grows inside the
5:25
uterus starts growing in other parts of
5:27
the body instead and I can be
5:29
extremely painful like in some cases so
5:31
painful that it severely impact for patients
5:33
are able to do or how they're
5:35
able to live their lives. And
5:38
it's also surprisingly common. It's
5:40
the conditions that affects. One.
5:43
in ten months traders. But
5:45
millions. And millions of people overall.
5:48
And so Christine started talking about under
5:50
with one of her colleagues, a geneticist
5:52
named Peter Gregory Some and he was
5:54
interested because a friend of his was
5:56
one of the millions of patients who
5:58
has it. Also because
6:00
the disease just seem like it
6:03
was up his scientific alley, it
6:05
is highly genetics ah which initially
6:07
attracted me and so that allowed
6:10
us to get together to really
6:12
look at this disease from several
6:14
different vantage points for the computer
6:17
got to talking about how hard
6:19
it is to diagnose the disease.
6:21
The. Statistics suggest that it's
6:24
about seven to ten
6:26
years between symptoms and
6:29
and actual laparoscopic surgical
6:31
diagnosis, which is the
6:33
only definitive way. To.
6:35
Diagnose and Demetrius.
6:38
Physically it surgeons have to go in and
6:40
find and demetrius. Lesions said confirm and
6:42
and or diagnosis but sick I
6:45
surgery is that big of an
6:47
expensive stepped people sometimes put it
6:50
off for a while. And
6:52
then without a diagnosis, doctors
6:54
can dismiss people's pain like
6:57
they sometimes suggests that patients
6:59
are exaggerating. Or that they just
7:01
have a low pain thresholds and then send
7:03
them on their way and we. Thought
7:05
wow that's crazy. You.
7:08
Know how can we
7:10
continue to have people
7:12
suffering without a diagnosis?
7:15
But. As for scene and peter to talk
7:17
the more. They. Came up with
7:19
the idea. That sort of at the heart of the
7:21
road study. They thought that
7:24
endometriosis might has ten of a. Cellular.
7:27
Signature. Basically like a. Pattern.
7:30
Of cells or or sell behavior That to
7:32
tell you. This. Is
7:34
Endometriosis. Without. Someone
7:37
needed to go in and find lease
7:39
ends. And elbows. Some.
7:41
Literature to support this like some scientists
7:43
had like that tissue from and demetrius
7:45
his patience uterus is and they'd notice
7:48
that some of the cells of entropy
7:50
since for different from this Als patients
7:52
without and out. So. Christina Peter
7:55
obviously wanted to investigate the further.
7:58
Accept their the problem. Most.
8:00
Of the studies of the uterine
8:03
lining or based on uterine biopsies
8:05
which require invasive procedures so not
8:07
something that a piece and or
8:09
our research volunteer can do tacitly.
8:12
There's gotta be a better way of
8:14
characterizing what's the uterine lining looks like
8:16
without having to subject them to biopsies.
8:19
So that's like a scene. and Peter
8:21
landed on menstrual fluid. Most people
8:23
think of their menstrual blood is
8:25
something that gets discarded. And
8:27
that's how it has been
8:30
viewed, something that should be
8:32
discarded. But in fact, we
8:34
believe that it's a window
8:36
into studying and understanding the
8:38
uterus, and that it's certainly
8:41
a treasure. Not. Trash
8:43
and it is holds a
8:45
lot of information. It
8:50
seems most obvious like people you
8:52
nurses said the uterine lining practically
8:54
once a month. So instead of
8:57
going in there surgically to grab
8:59
the lining, why not just wait
9:01
for the uterine lining to come
9:03
to you? But
9:05
apparently this was not all that
9:07
obvious. We were kind
9:09
of sucks because the uterus
9:12
has been identified for a
9:14
very long time, yet. To.
9:16
Understand the uterus. No one has
9:19
said oh well, we could study.
9:21
Menstrual. Blood and it was
9:24
a shocking revelation. We went
9:26
to the literature like everybody
9:28
else is. the scientists would
9:30
do. And we were
9:32
shocked to see that there were. Very.
9:36
Few studies that ever.
9:38
Looked. At Menstrual blood
9:40
Collected menstrual blood and actually
9:43
characterized as in any way
9:45
other than the identification of
9:47
stem cells. I mean, there's
9:50
standard ways to collect stools, their
9:52
standard ways to collect urine and
9:55
semen, but no one has really
9:57
thought about collecting menstrual blood in.
10:00
This way that would be
10:02
consistent with scientific studies. That
10:07
might seem like a. Small. Things.
10:10
But science. Is sort of like
10:12
China had a trail through the woods.
10:15
When. Lots of people have studied something. Before
10:17
you they. Clear. The Way: a
10:19
little bit like the outline best practices see, you
10:21
can sort of follow in their footsteps for a
10:23
while before you have to start putting your own
10:26
pass. Such. Because there is
10:28
so little prior work done on most
10:30
are fluid, President Peter couldn't just jump
10:32
right in and start answering their main
10:34
post. And they had
10:36
to figure out just how to
10:38
collect menstrual fluid, but how to
10:41
collect fluid from patients with endometriosis.
10:43
We. Took it really, really seriously
10:46
because we knew that we
10:48
wanted to collect eventually from
10:50
young teens and people with
10:52
pelvic pain and it has
10:54
to be something that was
10:57
usable I'm and feasible for
10:59
them. They. Also wanted to collect
11:01
fluid from people who lived all over
11:03
North America, which meant that there were.
11:06
More. Questions to answer: How quickly do
11:08
they have to get it's you? Does
11:10
it has to be on ice? Does
11:12
it get infected? With things on the
11:15
way being shipped here, we did
11:17
a lot of work. Even.
11:19
Once they had their samples, And took
11:21
them a while to figure out which parts of the
11:23
samples to focus on. We didn't even
11:25
look at the tissue fragments it's and menstrual
11:27
blood for several years as we threw them
11:29
out. Yeah it took. Working with the
11:32
pathologists is just look at and so
11:34
blood and seats. I say they're all
11:36
these big clumps of tissue seer. Why
11:38
are we studying those and all
11:41
this. Trial and error and sort of. Like
11:43
forging a path through the woods. Did.
11:45
Not end with. Different of the
11:47
technical challenges hear what was
11:49
the response of my research
11:51
nurses? To. The idea that we
11:53
now needed to collect menstrual blood. They.
11:56
Thought I was crazy. Are
11:58
they thought we were crazy? You know? I'm you
12:00
Took a while just to convert our
12:03
own staff who are very open minded
12:05
wonderful people said oh maybe this really
12:07
is worse still me So. We did
12:09
succeed in doing that. Now
12:13
of course they have Ember. When you first
12:15
said me that raspberry read file a fluid
12:17
and was very patient with me and they
12:19
also have lots of other people are he
12:21
on the study to. So. I'm gonna
12:23
take this of the By repository and
12:25
Laurie on anorexia. the next session, the samples
12:28
and then it's all on the lam.
12:30
Citizen Ran. After years
12:32
of work has of their
12:34
scientific trail but they're ready
12:36
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12:38
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12:41
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with their finances and to help them perform at
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their highest level. You know, I've often
15:36
wondered why it is that some women's
15:39
school girl menstruation the curse.
15:43
Peggy calls it that. And
15:46
it is kind of a nuisance, isn't it? I
15:48
suppose it is sometimes. After
15:52
a lot of trial and error, Peter
15:55
Gregerson and Christine Metz collected thousands
15:57
of samples of menstrual fluid from donors.
16:00
samples from participants diagnosed with endo,
16:02
samples from participants with symptoms but
16:04
no diagnosis, and then samples from
16:07
participants who did not have the disease.
16:10
Which meant that they could finally examine those
16:12
samples to see if they could spot
16:14
some sort of differences between them, some
16:16
kind of like signature or pattern that
16:18
was unique to endometriosis patients. And
16:21
each sample is really complex. There
16:24
are hundreds of thousands or even millions of
16:26
cells in there. So for each one, they
16:28
examined just thousands of cells. And
16:30
what did we find? They found exactly
16:33
what they were looking for. So more
16:35
of one type of cell that's linked
16:38
to inflammation, less of another
16:40
type of cell that's connected to the immune
16:42
system, patterns and how sort
16:44
of cells changed into other cells.
16:47
And all of this taken together amounts to
16:51
a kind of signature that endometriosis
16:53
leaves in menstrual fluid, potentially.
16:57
They still need to make sure. And so that's sort
16:59
of what they're up to now. We
17:02
can definitively show the differences
17:04
between patients who have been
17:06
diagnosed with endometriosis and
17:08
healthy controls. We can
17:10
clearly see those differences. The
17:13
next question to answer is can
17:15
we see similar
17:18
differences or maybe their
17:20
unique differences in patients who
17:22
are symptomatic and have not yet
17:24
been diagnosed in healthy controls?
17:27
Remember, the goal is eventually to develop
17:30
a test that could detect endometriosis
17:32
using menstrual fluid so that patients don't
17:35
have to undergo surgery. And
17:37
to achieve that goal, they need proof
17:39
that their test actually works. Like
17:41
they need to look at fluid from patients who
17:44
don't have a diagnosis yet, predict
17:46
whether or not they have endo, and
17:48
then confirm whether or not they were right
17:50
using laparoscopic surgery. So
17:53
this sounds very easy, right?
17:56
You get menstrual effluent a
17:58
couple of months before they have a laparoscopy,
18:01
somebody goes in and says, yep,
18:03
there's endometriosis here, or no,
18:06
there's no endometriosis here. It
18:08
is, as it turns out, not very easy.
18:10
I think the biggest
18:13
challenge is finding
18:17
patients who want to
18:19
undergo the diagnostic surgery
18:21
to confirm their
18:23
symptomatic state. People
18:26
do not jump
18:28
into the surgery. They
18:30
often push it off for years.
18:34
But also there's a chance of a false
18:36
negative here. So like a situation where a
18:39
surgeon goes in and says, I don't
18:41
know, like I don't see the right kind
18:43
of lesions, there's no endometriosis here, even
18:46
when there actually is endometriosis
18:49
there. And because Christine and
18:51
Peter's study sizes have been fairly small, one
18:54
false negative could really mess things up.
18:57
You need to have a situation where
18:59
the surgeon that is doing
19:01
the evaluation is highly competent
19:04
at saying, yes, there is
19:06
endometriosis, or no, there's no
19:09
endometriosis. So they are taking
19:11
their time and it's checking their work,
19:13
confirming that this diagnostic test works. But
19:16
even then, their work won't
19:19
be done. Christine says that
19:21
figuring out endometriosis' signature
19:23
pattern could actually help with
19:25
more than just diagnosis. Because
19:28
there's a lack of effective
19:30
and tolerable treatments for
19:33
patients with endometriosis. One
19:35
of the treatments out there is the pill,
19:37
which helps some people, but not
19:39
everyone. Doctors can also try to
19:42
remove endometriosis lesions by
19:44
going into surgically burn them or cut them.
19:46
And that does sometimes help, but
19:48
the effects don't always last. surgeries,
20:01
it can go on and on for some
20:03
people. Some people get hysterectomies,
20:05
but even that doesn't always
20:07
help. The reason we don't
20:10
have good treatments for this disease is
20:12
that we don't understand what
20:15
I'm going to call the biology of the disease.
20:18
We don't understand enough about the disease
20:20
to have a better
20:22
treatment than that. And
20:25
that's the big thrill
20:28
of studying menstrual blood to us,
20:30
in addition to diagnosing it,
20:34
treating it. The
20:39
work that Christine and Peter are doing, it has
20:42
the potential to help millions of people. So
20:44
if diagnosing and treating endometriosis was
20:46
all menstrual fluid could do, that would
20:50
already be a lot. But
20:53
then, there's more. Unfortunately,
20:55
if you have a uterus, there are a lot of things
20:57
that can go wrong with it, and can go wrong, and
20:59
they often do. Leah Hazard is
21:01
a midwife and the author of WOOM,
21:04
the inside story of where we all began.
21:07
She has been digging into lots of
21:09
research around menstrual fluid, and
21:11
it turns out that some scientists are starting
21:13
to wonder about the scientific
21:15
possibilities of menstrual fluid and
21:18
uterine tissue. Obviously, cancer
21:20
is the biggie, so there are
21:22
people trying to predict or diagnose uterine
21:24
cancer by studying the lining of the
21:26
womb. We're also
21:28
interested in maybe how the menstrual
21:30
tissue of people with fibroids might
21:33
differ from other people. So fibroids
21:35
are benign growths within the uterus,
21:37
so basically benign tumors,
21:40
in a sense, but they can also cause
21:42
pain and heavy bleeding. And
21:44
we've got adenomyosis, which is where the lining
21:46
of the womb begins to burrow into the
21:49
actual deeper muscle layer of the womb. Tens
21:52
of thousands of people have uterine cancer
21:54
in the US, and tens of millions
21:56
of people have fibroids. That's why
21:58
this research is so important. So it fading.
22:01
There are enough people now more
22:03
and more every year who are
22:05
and taking the and studying menstrual
22:07
tissue. And endometrial to suits
22:10
to advance diagnosis. And treatment. Of
22:12
these conditions. And
22:18
yet the stigma that ruins might
22:20
throw a joke. The Amber: It's
22:23
still very real. Like it's still
22:25
subtly seeping this research. It's hard
22:27
to get funding for reproductive science,
22:29
and even if you do, they're
22:31
all the hurdles that Christine and
22:33
Peter had to clear all the
22:36
work that they had to do
22:38
before they can start exploring or
22:40
question they got. a same tax
22:42
is applied to men's recent research.
22:45
So. As we a
22:47
hazard put it to me, we don't
22:50
have the love our periods or be
22:52
period positive fight like periods. Can be
22:54
horrible and painful, or even just
22:57
really annoying. I think there's a
22:59
big difference between annoying and same
23:01
for all right. I mean, we've
23:03
missed so much. not just about
23:06
period, but about. Email
23:08
and or think bodies in general because
23:10
we have historically thought that they were
23:12
disgusting and same poll. There's
23:15
so much potential and menstrual fluid
23:17
like. So. Many treasures. They
23:19
could help so many people. The
23:22
real same here would be if
23:24
we let stigma get in the
23:26
way. Of discovery those treasure. This.
23:39
Is the end of our theories? the bleeding
23:41
edge? But there is a lot more to.
23:43
Explore. Here. First. Of
23:45
all, if you have endometriosis or.
23:48
If you think you have endometriosis, and
23:50
you want to contribute take the
23:52
scene and peters research they would
23:54
love new study participants so we
23:56
will link to the road study
23:58
and are transcripts but you can
24:00
all just look up Rose Study
24:02
Endometriosis to read more about the
24:04
study and if you want to
24:06
enroll online. If you
24:09
want to hear more about endometriosis
24:11
we actually have an old episode
24:13
about Endo specifically that we will
24:15
link to in the transcript and
24:18
then if you want to read more about
24:20
periods or about uteruses in general I
24:23
cannot recommend Leah Hazard's book
24:25
Woom Enough. She has
24:27
more about Christine Metz's work in there but
24:29
also just all kinds of
24:32
fascinating research on wombs and
24:34
womb health. We will also have
24:36
Q&A with Leah Hazard on our
24:39
site. This episode
24:41
was produced and reported by
24:44
me, Bird Pinkerton. It was
24:46
edited by Jorge Just, Brian
24:48
Resnick, and Meredith Hognott. Meredith
24:50
also runs this show. Noam
24:53
Hasenfeld composed the music. Christian Ayala
24:55
did the mix and the sound
24:58
design. Melissa Hirsch did our fact-checking.
25:01
Mending Len is the fact that female
25:03
phalloropes are not only bigger than
25:05
male ones but also more colorful.
25:09
This podcast and all of Vox is
25:11
free because of gifts from our readers
25:14
and listeners. You can go
25:16
to vox.com/give to give today
25:18
or I guess and or
25:21
you can support the show by leaving us
25:24
a review. Reviews make a
25:26
very big difference for our show
25:29
and then if you have thoughts
25:31
or feelings about periods or menstruation
25:34
or endometriosis or just ideas about
25:36
other episodes that we should do please
25:38
email us through their thoughts or
25:41
questions. We are at unexplainable at
25:43
vox.com and I definitely read
25:45
every email. Unexplainable
25:47
is part of the Vox Media Podcast
25:49
Network and we will be back next
25:52
week.
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