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The bleeding edge

The bleeding edge

Released Wednesday, 13th March 2024
 1 person rated this episode
The bleeding edge

The bleeding edge

The bleeding edge

The bleeding edge

Wednesday, 13th March 2024
 1 person rated this episode
Rate Episode

Episode Transcript

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help them perform at their highest

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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

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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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