From the Vault - Endometriosis: Menstrual Backwash (Ep 88) - This Podcast Will Kill You

Episode Transcript
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Speaker 1 (00:00):
Hi, There, Erin and Aaron here. We recorded this episode
on endometriosis back in January of twenty twenty two, and
it was really the first time that we had covered
a topic like this.

Speaker 2 (00:11):
Yeah, this episode has stayed with us and it's usually
our first answer when someone asks us what our favorite
episode is it is.

Speaker 1 (00:19):
We are especially grateful to Susie, who provided the first
hand account which resonated with us and with so many
of you.

Speaker 2 (00:27):
Earlier this year, Susie's husband reached out to us to
let us know that Susie had passed away in September
of twenty twenty four due to complications from cancer.

Speaker 1 (00:37):
We are heartbroken for her family and her loved ones,
and we remain eternally grateful for her vulnerability and willingness
to share her story.

Speaker 3 (00:48):
Hi. My name is Susie sol Aviv. From a pretty
young age, I taught myself not to pay a lot
of attention to my body. When I was younger, I
didn't really have any issues, but after puberty, I started
to have pretty bad cramps. I had to go to
the bathroom fairly often, and I also found out that

(01:09):
I was anemic, and I would occasionally if I was
exercising too hard, start to black out. Nobody really had
a good explanation for this, and nobody really directed me
to a doctor or anything. So I just ignored it
and moved forward. Lots of other people in my high
school had period cramps, Plenty of people were going on

(01:31):
birth control to try to control the cramps, and you know,
it was easy enough for me to get past it
was a little bit of ybuprofen. I was also raised
very religious, and I'm still quite religious, and unfortunately, some
American purity culture crept into my upbringing, and so I
didn't spend a lot of time thinking about, for lack

(01:53):
of a better word, my reproductive parts. Spent a lot
of time ignoring them, spent a lot of time nothing
was really going on, and generally being embarrassed about it.
So I got good at disassociating from those parts of
my body. After I got married, I ended up having
extremely painful sex, and I assumed that it was related

(02:16):
to purity culture, and I assumed it was psychological. I
talked to my PCP about it. I think I got
a referral to pelvic floor therapy at one point, but
nobody was really concerned and again, I just decided that
it wasn't a very big deal. It was just something
that was in my head, and I was able to
move past it. In our first year of marriage, I

(02:37):
got pregnant unexpectedly and had no problems with the pregnancy
except that it was I was very nauseous through the
entire thing. I was in a lot of pain, and
then when I had to have cervical checks, I was
a tremendous amount of pain. Again, I told them that
I thought this was due to growing up with a

(02:58):
certain amount of purity culture and that it was psychological,
and nobody questioned it. So after I had my daughter,
eventually my period returned and I started having worse and
worse cramps. But everybody tells you that after you have
a baby, your periods get worse. That's just what people

(03:18):
tell you, and so once again I chose to disassociate
from it and ignore it. Some of the painful sex
symptoms subsided, others remained. Mostly I was just proceeding with
business as usual. Last year, I started having cramps so
bad that I would have bladder spasms, which means that
I would literally be my pants with no control. It

(03:41):
only happened a few times, thank goodness, but I also
ended up starting to have to lie down when I
had my cramps, and I was surprised that it wasn't great,
but I could generally manage it with like three to
four ibuprofen and heat pack. But by the fall things
had escalated and the ibuprofen wasn't cutting it and the

(04:03):
heat pack wasn't cutting it, but the killer was when
I noticed that there was blood in my stool. I
didn't really want to do anything about it, but by January,
my sister told me that I had to do something
about it, so I went into urgent care. They took
some samples and told me that I needed a colonoscopy
and that I should not have any ibuprofen until after

(04:23):
I had the colonoscopy. Then, on my thirty fifth birthday,
I spent the entire day in agony and the worst
pain I've ever had because I was experiencing my cramps
without any sort of pain blocker. I went in for
a colonoscopy at the beginning of March, and I didn't
expect them to find much of anything, because again I

(04:46):
didn't really believe that I had any problems and I
thought to myself, the only problem that I could really
have is cancer, because cancer runs rampant in my family.
Both my father and my brother died of fairly rare cancers,
my father viuvial melanoma and my brother of colangiocarsonoma. So
I was a little anxious about the colonoscopy, but not overly.

(05:07):
So when I woke up from the colonoscopy, the doctor
went to get my husband and took me to his
office and sat me down and told me that he
had found something and it was very likely to be cancer.
So this was incredibly traumatic for me because I was
immediately convinced I was going to die. I also delivered
the news to my family and told basically everyone I know,

(05:31):
because I decided that if I did indeed have cancer,
I wanted everybody to start praying as quickly as possible,
and I maintained that it worked because a week later,
the same doctor called me back and told me that
the cell samples, to his great shock, had come back
not as cancer but as endometriosis. I literally fell to
my knees on the ground. I changed doctors, so I

(05:53):
went in for a second opinion. I had another not
another colonoscopy, but a flexible sigmoidoscopy, and the doctor told
me he thought that I had endometriosis and maybe cancer,
and I was referred to the gynecological oncology department. I
went in and met with one of the directors of

(06:14):
the guyinanc department, who told me that she thought, yes,
there's a possibility of cancer, but mostly it was horrible endometriosis.
So she showed me the images that they had taken
of my body in the MRI and everything, and you
could see that there was something growing out of my
left ovary into my colon, and we knew that it

(06:37):
was probably in other places, but there is no way
to confirm endometriosis except by surgery, so they could not confirm,
and they thought there was a possibility that there was
still cancer. So the other thing that the guynanc told
me was that she thought I was going to have
to have a complete hysterectopy and eupherectomy. I had been

(06:58):
trying for a second child point for almost a year
and this was devastating, but because there was a chance
of cancer, I was like, just take it all. I
don't want it, get rid of it. So I had
a period farewell party with my friends over Zoom. We
drank cranberry juice, we toasted. I wrote a letter to
aunt Flow, sending her out into the worlds, and my

(07:20):
surgery was scheduled for May fourth. My last period was
one of the worst pains I've ever had in my life.
The ibuprofen didn't ease it, the heat didn't ease it.
I was just lying in bed for two days and
was more or less silent screaming.

Speaker 2 (07:36):
It was horrific.

Speaker 3 (07:38):
I had surgery. They confirmed stage four endometriosis. I discussed
with my surgeon that I wanted to try to keep
my rite ovary if possible, because I didn't want to
go into surgical menopause at thirty five. There are a
lot of issues associated with going into menopause early, and
I wanted to avoid them if I could. Also, I

(08:00):
have I struggle with my mental health. I have depression anxiety,
and I knew that the severe hormonal shift would be
very difficult. Although there was less than a five percent
chance that they could save my ovary, the surgeon was
able to do it. There is still an insignificant amount

(08:20):
of endometriosis on my right ovary. It's less than one centimeter,
but they were able to remove fourteen point five centimeters
of colon, which is about the size of sharp b
a six centimeter rectovaginal septum tumor, which which is about
the size of an egg, and a seven centimeter left

(08:41):
ovarian tumor, which is about the size of peach. And
the left ovary. I woke up to the very happy
news that I still had an ovary, which I did
not expect, and about a week later I got the
even happier news that there wasn't cancer, it was just endometriosis.
So after the surgery, it took me about three months
to feel normal again. The biggest shift since the surgery

(09:07):
is that I've had to relearn my body. I have
to relearn what feels good and bad, what's painful and
what's not, because I just disassociated from it so much
that I had no idea that I was in pain.
The emotionally challenging part of this, aside from thinking that
I was going to die of cancer for a fairly

(09:29):
significant amount of time, was that there's almost no chance
of me ever having another biological child, and so I've
had to give up on that particular dream because the
hope was just too much. But we got a puppy,
and so that's my replacement baby. I have also learned
to be a lot kinder to myself and to trust

(09:52):
my body more. I accept now that I am living
with a chronic illness. I try to take naps a lot,
I try to listen to what feels good and what
feels bad. But when I stopped to really think about it,
the thing that really makes me angry is that I
had no idea I had endometriosis before any of this started.

(10:12):
It is absurd that no one thought of endometriosis, That
I was never presented with any education about endometriosis, that
no one in my friend's circle ever talked about endometriosis,
even though I found out more and more people have it,
and I just feel like I know so little. In
a post I wrote on Reddit, I wrote, I've been

(10:33):
a feminist for my entire life without understanding that I've
been trapped in a patriarchal pain trap. So thank you
for listening to my story.

Speaker 1 (11:27):
Thank you so much Susie for taking the time and
being willing to share your story. It was Oh my gosh,
I mean.

Speaker 2 (11:36):
Yeah, I can't wow, thank you.

Speaker 1 (11:39):
Yeah.

Speaker 2 (11:41):
Hi, I'm Erin Welsh and I'm Erin allman updyke.

Speaker 1 (11:44):
And this is this podcast will kill you.

Speaker 2 (11:48):
It's uh, it's gonna be a big episode. Erin.

Speaker 1 (11:52):
This is certainly my longest notes like by I think
like kind of a bit so just yeah, I really
kind of it got away from me. But I'm excited
about it.

Speaker 2 (12:10):
I am too. I have like a lot of feelings
about it. So it's going to be a good one.

Speaker 1 (12:17):
Yeah, And what exactly is going to be a good one?

Speaker 3 (12:21):
Oh?

Speaker 2 (12:21):
Yeah, that's right. Today we're covering endometriosis.

Speaker 1 (12:25):
That's right. What even is endometriosis? At the end of
this episode, will we have a satisfactory answer to that question?

Speaker 2 (12:36):
I think we'll have, like at least most of a
satisfactory answer, will have a clinical definition.

Speaker 1 (12:43):
That's true, that's true. Where does that leave us? I
guess we'll find out before we get into the nitty
gritty of all of that. Though. Should we do quarantining?

Speaker 2 (12:56):
We really should?

Speaker 1 (12:58):
What are we drinking this week?

Speaker 2 (13:00):
We're drinking the chocolate cyst of course. Oh boy, honestly,
that's I think that's a grosser name than our diabetes
one sweet Pea. Yeah, I think this is grosser.

Speaker 1 (13:12):
Is it grosser than our MRSA one?

Speaker 2 (13:15):
Mm? No, mah, maybe, I don't know. You tell us listeners,
You tell us listeners.

Speaker 1 (13:23):
Yeah, what's the grossest one yet? So why are we
calling it the chocolate cist though? Yeah?

Speaker 2 (13:29):
Okay, so a chocolate cyst is like one of the
descriptors for an endometrioma, which is when you get endometriosis
on your ovary. We're gonna get into all of it,
but basically, sometimes you get these things that look like
a little chocolate truffle.

Speaker 1 (13:49):
Liquid or Okay, well, definitely garnish this with a chocolate
truffle if you can.

Speaker 2 (13:57):
So what's in the chocolate cyst?

Speaker 1 (14:00):
Chocolate liqueur, banana liqueur, coffee liqueur, and cream and then
of course s garnish like I said, with a chocolate truffle.
And also the placy Burita is just probably going to
be the most decadent, delicious chocolate milkshake you've ever had,
chocolate banana milkshake. Yeah. And you can find our recipe

(14:24):
for our quarantini as well as our non alcoholic Placyburta
on our website. This podcast willkill You dot Com and
we'll also post it to all of our social media channels.

Speaker 2 (14:35):
On our website, this podcast will kill You dot com.
You will find everything that you could want to find.
We have merch we have links to Bloodmobile, who provides
the music for this podcast. We have transcripts of all
of our episodes now, which is thrilling. We've got a
bookshop dot org affiliate account. We've got a good Reads list,
we have a link to our patreon. We have it's

(14:57):
all there.

Speaker 1 (14:57):
It's all there, it's all there, and more.

Speaker 2 (15:00):
With that, Aaron, should we just get into the endomeet
trium of this episode?

Speaker 1 (15:08):
Erin, yes, yes, please please. Let's take a quick break first.

Speaker 2 (15:49):
I can kind of sum up this whole episode with
one of the more recent papers that I found. It's
the title of a paper from twenty twenty one, and
the title is simply, the epidemiology of endometriosis is poorly
known as the pathophysiology and diagnosis are unclear.

Speaker 1 (16:12):
And how that's the title.

Speaker 2 (16:14):
I know that's the title. Man, Yeah, it's uh yeah,
We're off to a really good start.

Speaker 1 (16:21):
Strong yep spoilers. I feel like, yes, we're in that title.

Speaker 2 (16:26):
Okay, So endometriosis. I know there's probably a good subset
of our listenership who has never heard of this. And
I am going to get to the official definition really soon,
I promise, but some little lead in. Okay, Endometriosis is
almost always described as a disease of women of child

(16:49):
bearing age. That is how it is described. It's a
problem straight off the bat because this description ignores number one,
anyone who is trans or non binary that has a
uterus or has endometriosis. Number two, it ignores the fact

(17:10):
that endometriosis pain and endometriosis itself can persist or even
sometimes arise after menopause aka after quote child bearing. Number three,
It also ignores the fact that cases of endometriosis, though
very rare, have occurred in people assigned male at birth,

(17:33):
which means that a uterus isn't necessarily a prerequisite for
the disease. And finally, and I think most importantly, I
don't know they're all important, but by designating this disease
to this particular group quote women of child bearing age
and Aaron, I know you're going to talk a lot
more about this.

Speaker 1 (17:54):
Oh yeah, yeah, so I thought, is it's also been
found in infants.

Speaker 2 (17:58):
Oh that's a good point. Yeah, yeah, it can definitely
be in before child bearing age as well.

Speaker 1 (18:04):
Everyone can get very trios.

Speaker 2 (18:07):
But by designating it as the disease of women of
childbearing age, it makes it really really easy in our
society to dismiss it as a condition for oh, young
women just have poor pain tolerance, or oh this is
a women's problem, or even worse, as a normal part

(18:30):
of young womanhood. Spoiler alert, it is none of those things.

Speaker 1 (18:35):
I'm going to be talking so much about this aspect
of it.

Speaker 2 (18:40):
I can't wait. I'm gonna I'm going to try and
just hit us all with the little that we do
know about the biology. So let's actually define the topic
of today's episode, shall we?

Speaker 1 (18:53):
Mm hmm?

Speaker 2 (18:53):
Okay, So the technical definition of endometriosis is simply the
finding of endometrial glands and stroma, which just means endometrial
like tissue outside of the uterus. So what does that mean? Yeah,
to talk about that, I want to first talk about

(19:14):
my personal favorite organ, the uterus. That's my favorite one.
Do you have a favorite organ?

Speaker 1 (19:21):
I've never thought about it.

Speaker 2 (19:23):
It's a uterus.

Speaker 1 (19:24):
No, I don't. I don't think I would need I
would need more time.

Speaker 2 (19:27):
Okay, that's fine. Okay. So we talked I think a
fair bit about the uterus in our birth control episode
because we talked about the whole menstrual cycle. So I'm
just gonna briefly recap. The uterus is an organ that's
made up of a muscular wall, the myometrium, and an
inner layer, the endometrium, that's composed of glandular cells. So

(19:49):
there are these cells that basically form into little glands
as well as stroma or like support cells is how
you can think of them. That surround these glandular cells
and this endometrium. This inner lining of the uterus is
constantly in flux. This lining is what responds to and

(20:10):
changes with the influence of cyclic variation in our hormone levels,
most specifically estrogen and progesterone. This is the menstrual cycle
that we went over in our birth control episode, which
was now a couple of years ago. To recap it,
Under the influence of an increase in estrogen, oocytes in

(20:32):
the ovaries begin to mature, and the uterus lining the
endometrium proliferates, it grows in number. These stromo cells and
these glandular cells, and this is known as the follicular
phase or the proliferative phase, where this lining is growing

(20:53):
and the endometril lining is becoming thicker in preparation for
the potential implantation of a blastocyst. Then that peak of
estrogen prompts a surge of another hormone that causes the
release of an egg aka ovulation. And then as that
surge of estrogen declines, progesterone, another hormone, begins to increase,

(21:14):
and the uterus, the endometrium enters what's known as the
secretary phase, where these glands thicken and the arteries within
their widen and proliferate in number, and the endometrium undergoes
this process, further preparing it for receiving a blasticist. And

(21:34):
then without anything that implants, fourteen days go by and
progesterone levels sharply decline, and this withdrawal leads to the
separation of all these cells from their basal layer and
they slough off aka menstruation. All of that endometrial tissue
then exits through the cervix, which is the opening of

(21:56):
the uterus through the vagina, and that is menstruation, right, yep, right, Okay,
So if that all is the menstrual cycle, and that's
what's happening inside of a uterus during that menstrual cycle,
then what is endometriosis If it's the finding of these
same type of cells that are found inside of a uterus,

(22:20):
these endometrial, glandular and stromal cells, but now they are
implanted in tissue outside of the uterus. So instead of
being inside the lining of this muscular organ, it's outside
on the wall of the organ, or on the wall

(22:41):
of your belly, which is called the peritoneum, the inside
wall of your abdomen. It could even be on your
bladder or in your Philippian tubes, or on your ovary,
or on your rectum. It could be anywhere literally in
your body.

Speaker 1 (22:57):
Yeah.

Speaker 2 (22:59):
So then the question is how does this become a
disease or a problem, Like why is it a problem
to have this tissue outside of the uterus. Well, this
tissue is still active. It's hormonally sensitive endometrial cells that
are undergoing the same proliferative and secretory and then degeneration

(23:22):
that happens within the uterus and would end in mensies
leaving the body through the vagina, but it's happening in
an abnormal location and therefore leading to not only abnormal
responses in our body and massive amounts of inflammation, but
it's also then not able to leave the body, so

(23:44):
this inflammation stays contained within the body. That leads to
tissue damage, which can then lead to scarring and fibrosis,
which leads to the symptoms of endometriosis, which are chiefly pain,
which doesn't begin to describe adequately like the true symptoms,

(24:07):
and also infertility or difficulty conceiving or sustaining a pregnancy.
So that was a lot, like all in a very
short amount of time. And that's all we know about
enemy dresses. Just kidding, We know like a tiny bit
more than that. Yeah, So that explanation left a lot

(24:28):
of open ended questions, and I think the first one
that I would like to be able to answer is
how how does this endometrial tissue end up in a
place where endometrium shouldn't be. Tissue types in our body,
like different cell types are actually pretty tightly regulated, So

(24:49):
like the tissue that makes up our lining of our
abdomen is different than the tissue that makes up the
lining of your uterus, which is different than the tissue
that makes up your heart or your blood, ves, souls,
et cetera.

Speaker 1 (25:01):
Right, Right, And so then because it's so tightly regulated,
shouldn't your body recognize that, like, hey, this isn't necessarily
in the right spot it.

Speaker 2 (25:13):
Yeah, And in the case of anenometrius, that's part of
the problem is that your body does recognize it as
something that's not in the right spot and therefore causes
a lot of inflammation within it, right, Yeah, And so
then that leads to part of the problem, or at
least we think that maybe that's how it's happening. And
with a lot to do with endometriosis, it's hard to

(25:35):
know who's the instigator, like which is the cause and
which is the effect? Right, right, But yes, that can
be part of the problem because our body does recognize
when a tissue is not in the right place a
lot of times. But again, this doesn't happen very often
to have a tissue type in a location in the

(25:57):
body where it doesn't belong. Because in general, as we
develop from a single cell all the way into our
multicellular human cells, our cells undergo this process of differentiation
into all of our specific tissue types in a very
characteristic pattern during the process of embryogenesis and development. So

(26:19):
all of our cells have very explicit sets of instructions
that they follow and explicit influences that they're under in
order to develop into these different tissue types in certain
areas and not in others, Which is why we don't
see heart tissue in our bones or brain tissue in
our guts for the most part. So why on earth

(26:42):
do we sometimes get endometrial tissue outside of the inside
of the uterus? And the short answer is, we don't know,
we don't know, we do not know. Let me go
through the quote prevailing theories and then maybe Erin you
and I can have some opinions. So the kind of

(27:08):
what's obnoxiously still called the prevailing theory on how this happens,
on how endometral glands end up implanting and then replicating
and proliferating outside our uterus is something called retrograde menstruation
or what.

Speaker 1 (27:24):
Do you call it, Erin as I've been calling it
menstrual backwashril backwash. Could not for the life of me
remember retrograde menstruation.

Speaker 2 (27:35):
It's a good visual menstrual backwash.

Speaker 1 (27:41):
Yeah, essentially.

Speaker 2 (27:43):
So if you've not recently looked at a picture of
a uterus, let me paint you one. So the uterus
is connected to Philippian tubes at the top. They look
kind of like ears that come off, or maybe little arms,
and these Filippian tubes are open at the end. They
have these little thimbrae little fingers at the end, and

(28:04):
just outside of these Philippian tubes is where our ovaries sit.
So during menstruation, all of the endometril lining and tissue
comes out through the cervix, which is the base of
the uterus, and also the top of the vaginal canal,
that is the normal flow of menstrual products. But the

(28:27):
top of the uterus, those Filippian tubes are open at
the ends. So in fact, there is in many people
who menstrate, menstrual product aka endometrial tissue that goes backwards
and it goes out through those Philippian tubes and enters
our peritoneal cavity. That's it backwash, backwash. And it was

(28:53):
thought that this certainly must be the way that endometriosis happens.
These endometrial tissues are entering our peritoneal cavity. Boom, there
you go.

Speaker 1 (29:05):
I think there's a really interesting parallel between this, like
wandering endometrial tissue concept and the wandering uterus, the wandering
usteria concept.

Speaker 2 (29:17):
It's yeah, it's the same. It totally is.

Speaker 1 (29:20):
It's very interesting to me.

Speaker 2 (29:23):
And you know, there is some evidence in support of this,
because a sizeable portion of endometrial implants occur in areas
where this menstrual backwash, this retrograde menstruation would end up.
And in a lot of people where they have looked
at does this person with endometriosis have retrograde menstruation, they

(29:46):
have found yes they do, and so there's a correlation there.
But as it turns out, this is very common and
happens in at least, if not more than, about forty
percent of people with the uterus who men straight pretty
much every time they menstraight to varying degrees. Right, So

(30:07):
it doesn't explain why some people then go on to
develop endometriosis and others don't. It also doesn't explain how
endometriosis can happen in people without a uterus to begin with,
which again is incredibly rare, but has happened and it
doesn't explain how endometrial cells can end up outside of

(30:30):
the abdominal cavity entirely, which it can, right, You can
get endometriosis in the diaphragm, in the thorax.

Speaker 1 (30:40):
In the lungs. Uh huh.

Speaker 2 (30:42):
So this menstrual backwash theory doesn't quite some work. It
need some work, or it.

Speaker 1 (30:49):
Just needs to be discarded for a new one or
integrated with another passis.

Speaker 2 (30:54):
Yeah, and we'll we'll get there actually, because there's an
interesting integrative one. So then there is a theory of
stem cells, of which there are kind of two different
schools of thought. So stem cells, I think that I
might have touched on this in the HPV episode. I'm
not positive we've talked about them before, but anyways, I
don't know. A stem cell is a cell that has

(31:16):
the ability to differentiate into other cell types. So, like
I was saying, how when we develop from a single
cell into a multicellular human, our cells are differentiating. They're
becoming like grown up quote unquote, grown up cells that

(31:37):
have a specific job and function well. Stem cells are
kind of like baby cells that have the ability to
grow up and become any other type of cell or
many other types of cells. So there's a theory that
perhaps bone marrow stem cells, which have the ability to
differentiate into a number of cell types, might somehow find

(31:59):
their way into the peritoneum or the abdominal cavity, and
then there they would embed and under certain hormonal influences,
would differentiate into endometrial cells for some reason.

Speaker 1 (32:14):
Huh.

Speaker 2 (32:15):
Yeah, that's one theory. It's not a great one.

Speaker 1 (32:20):
Yeah, I'm like, how does that explain timing of things?

Speaker 2 (32:26):
Or honestly or in it doesn't. Okay, it's not my
favorite of the theories. So another one that's I think
at least a little bit more easy to understand is
a theory that it's endometrial stem cells. Okay, this is
coming a little bit closer. So, and this theory can

(32:49):
actually kind of tie into the menstrual backwash theory but
adds on to it a little bit. So in this case,
it's not the menstrual backwash per se.

Speaker 1 (33:00):
I love that we're calling it menstrual backwash. Now we've just.

Speaker 2 (33:04):
We're all in. Okay, So it's not the retrograde menstruation
of just any old endometrial cells, but of specifically endometrial
stem cells like the basal cell layers that have the
ability to differentiate into the different endometrial cell types. If

(33:26):
those maybe are either backwashed or find their way into
our bloodstream or our lymphatics, then perhaps those can embed
and they already have the ability they're programmed to differentiate
into endometrial cells. So it's logical then that they would

(33:46):
be responsive to the same hormonal influences that they would
if they were still in the inside of the uterus.
Does that make sense?

Speaker 1 (33:55):
Yeah, that's interesting. And so are there any studies, animal
studies or something things showing support for this or even
just like tissue culture studies showing support for this.

Speaker 2 (34:06):
There are certainly studies that show that these stem cell
types exist and can embed and then become you know,
endometra like tissue.

Speaker 1 (34:18):
Okay, And how then would those stem cells so these
are like these would be like the deepest basis layer.

Speaker 2 (34:27):
Yes, that's my understanding.

Speaker 1 (34:28):
Okay, So then how do they escape? Yea, the uterus.

Speaker 2 (34:32):
That's the question that we don't have an answer to.

Speaker 1 (34:34):
Interesting.

Speaker 2 (34:37):
There's another theory, and this is the sillomic metaplasia theory,
which is your celum is the inside of your abdomen,
so in this theory, regular old abdominal cells wherever in
your abdomen just undergo metaplasia. Metaplasia means they develop mutations

(34:58):
and then they change. And so instead of being a
differentiated let's say, abdominal wall cell, they dedifferentiate and then
redifferentiate into endometrial cells.

Speaker 1 (35:14):
Huh huh.

Speaker 2 (35:16):
So in this theory, instead of like a baby undifferentiated
stem cell that has the potential to become any cell type,
you're taking a fully formed adult cell and changing it
into an endometrial cell.

Speaker 1 (35:33):
Yeah, yeah, that seems okay, that seems a little complicated.
So currently today in we're recording this in twenty twenty one,
I know that like the prevailing hypothesis is still this
Spenstreul backwash thing. But is that, like, what is the
timeline for these other hypotheses, and is there are there

(35:53):
any of them that are seeking to dethrone so that one.

Speaker 2 (35:57):
The thing is not really okay, because the thing is
And here's the problem is that none of these theories
in and of themselves fully or adequately address the question
of how exactly endometriosis occurs, right, And they also don't
answer the question of why do some people get endometriosis

(36:19):
and other people don't. What are the risk factors? And
so I think where there is more research being done
is trying to understand the second part of that question,
why do some people get endometriosis and others don't. Maybe
it is one of these theories that we already have,
Maybe it really is menstrual backwash, but it still doesn't

(36:40):
answer the question of why forty percent of people have
menstrual backwash and not forty percent of people have endometriosis? Right, right,
And part of the answer to that question at least
seems to be genetic. So in a number of genome
wide associations studies, which is when you look at someone's

(37:01):
entire genome and you try and figure out what's going on,
there have been I think at least like ten or
fifteen different gene low size so different locations that have
been shown to be associated with endometriosis. So we know
that there's a strong genetic component, but knowing that there's

(37:21):
at least ten or fifteen different genes is also maybe
not all that helpful because it's hard to know what
that means. Right. It does seem like all of these
gene regions are in some way related to hormonal regulation
in some respect, so a lot of this is a

(37:42):
hormonally driven disease and really an estrogen dependent disease in
a lot of ways. But really one of the prevailing
thoughts is that it is this kind of genetic and
epigenetic factors combined with these unknown environmental insults that leads
to endometriosis, and endometriosis is associated with a number of

(38:05):
other autoimmune disorders, and that's kind of the thinking with
autoimmune disorders as well. Right, It's these genetic predispositions and
some kind of environmental influences that combine together to then
lead to this disease.

Speaker 4 (38:23):
It's not satisfying, but it does make sense in that
if there's a high level of inflammatory response to this
self tissue, even like in places it shouldn't be compared.

Speaker 1 (38:36):
To people who may not have as high as a
strong you know, inflammatory response and so might not have
a strong symptoms or might not have the development of
endometrio lesions or whatever exactly, then that sort of that
kind of goes along with it.

Speaker 2 (38:50):
Yeah, especially because while this is if you look at
endometriosis tissue histologically like under a microscope. It looks just
like endometrial tissue. It's histologically it is endometrial tissue, and
in some ways it does behave in the same way
as endometrial tissue inside your uterus, right, it proliferates with estrogen,

(39:15):
it degrades, et cetera. But what's different is that outside
of the uterus, this endometrial tissue is associated with hugely
increased amounts of inflammation, and this we do know. So
we know that local inflammation and immune dysregulation is a
really big part of the pathogenicity of endometriosis, and this

(39:39):
inflammation itself is what then leads to the fibrosis, which
leads to these adhesions, which can lead to such significant
pain and symptoms. So one way to think of it
is that it's all related to the bleeding, because endometril
proliferation and then degeneration leads to so much bleeding. The

(40:00):
leading itself, like blood itself, is a very very inflammatory,
So the fact that it's trapped somewhere inside your body
rather than traveling through the vaginal canal, leads to a
lot of inflammation, which leads to immune cell infiltration, which
et cetera. Et cetera, all the way down the line.
But it's also not clear that that's the order in

(40:22):
which things go. It could be that do you have
underlying inflammatory changes, differences in the way that your inflammatory
markers react that then leads to the increased inflammation. Does
that make sense?

Speaker 1 (40:36):
Yeah, so it's like a chicken in the egg, but
it's like the chocolate system and the inflammation.

Speaker 2 (40:42):
That's exactly right, Aaron. Yeah, so that is what we
know about the kind of pathogenicity of vendometriosis.

Speaker 1 (40:55):
I'm still confused, like it's so so yeah, same okay,
question okay, or rather question what do these lesions look like?
How big do they get, what are the variations in
How do you know when you have one, et cetera,
et cetera.

Speaker 2 (41:11):
Yeah. So, typically endometriosis is classified into kind of three
main subtypes. So there's superficial peritoneal legions, which means these
little endometrial implants that are primarily within the abdominal cavity,
either on like the sirosa, which is the outside lining

(41:32):
of other organs, or on the walls of your abdominal cavity,
maybe tucked behind your uterus or up on the front
anywhere really, but they don't extend deeply into the tissues,
these superficial lesions, and they're generally small. I don't have
an exact size for you, but they don't extend very deeply.

(41:55):
That's the first type. Then there are ovarian endometriomas, which
is where we got the name for our drink. This
basically just means that the endometriosis has implanted on or
within the ovary. It's actually thought that it might be
like where the eggs pop out. If endometrial implants find

(42:19):
their way in there, they then become enclosed and then
they form. They can form these really rather large cysts,
and because they are enclosed within kind of ovarian tissue
and scar tissue around them, they undergo the same cycles
of proliferation and degeneration, and within time that blood is

(42:42):
like contained inside this cyst, and over time that becomes
a very dark like chocolate color, which is how they
got the name chocolate cysts.

Speaker 1 (42:51):
It also sounds horribly painful.

Speaker 2 (42:55):
Yes, and they can get very quite large. And then
the word subtype is deeply infiltrating endometriosis literally acronymed as dye.
Mm hmmm, Like who came up with that.

Speaker 1 (43:10):
Mm hmm, Yeah, it's not great, yep.

Speaker 2 (43:15):
And this deeply infiltrating form, by definition, invades into deeper structures,
which means instead of just being on the surface of
say your abdominal wall or on the surface of your bladder,
it's invading deeper into the muscles of your bladder, into
the walls of your rectum, through your urethra or your

(43:37):
urytor for example. God, yeah, it can be horrific, and
so especially deeply infiltrating endometriosis can cause not only incredible pain,
but also can then cause damage to and blockage of
really important structures like your colon or your bladder or

(43:58):
your urytor.

Speaker 1 (44:01):
So what is the association with these different stages and
pain intensity or is there any association or with infertility
or subfertility.

Speaker 2 (44:12):
Yeah, it's a really good question. There's not a solid
answer to that. In general, deeply infiltrating lesions are kind
of the worst as well as endometriomas, especially the ovarian
endometriomas are also associated with infertility. But the problem is

(44:33):
that just by looking at somebody's endometriosis, like during a surgery,
for example, you can't tell how bad their symptoms are
going to be so what it looks like doesn't correspond
very well with actual symptoms severity, which can be problematic,

(44:53):
very problematic. But of course the deeply infiltrating endometriosis has
the most potent to cause problems in other organs, for example.
But in terms of pain, which is kind of the
biggest symptom of endometriosis, any of the types can cause pain,

(45:14):
or any of the types might not be associated with pain,
So in that respect, it's difficult. In terms of pain, Uh, Aaron, Yeah,
So pain is classically like the hallmark symptom I guess

(45:37):
of endometriosis, and most classically it's dysmenorrhea, which is painful periods,
which sounds like, uh, that doesn't everyone have painful periods?

Speaker 1 (45:48):
This is not.

Speaker 2 (45:50):
So period pain. Typical period pain should not be so
bad that you are missing school, that you are miss work,
that you are laid out in your bed for an
entire week because you can't function as a human being.
And that's the kind of pain that is often associated
with endometriosis. You're not able to function because of how

(46:14):
much pain is associated with it. But it's not just
with menstruation. Especially as these endometrial implants sort of just
persist over time. It can also be dysperunea, which is
pain with penetrative sex, which can be hugely impactful on
somebody's life, pain with defecation, dyskesia, painful urination, just pain,

(46:42):
pain with everything, pain all the time, chronically. So but
here's the thing about pain. I'm probably not going to
do this justice, but I want to just briefly talk
about the neurobiology of pain. If we have time.

Speaker 1 (47:00):
This is gonna be a long episode, but you know,
take a break if you need to come back to it.

Speaker 2 (47:05):
Have a chocolate sistah.

Speaker 1 (47:08):
Yeah.

Speaker 2 (47:09):
So, pain at its core, Like the definition of pain,
I guess is when specific receptors, no susceptors are activated
and send signals to our brain, which are then interpreted
by the brain, processed in certain areas of the brain,
and then transmitted and we then experience pain. Like that's

(47:33):
a really general description of it. But there's a few
things about endometriosis pain and about chronic pain in general
that I think are really important to kind of understand. First,
studies have found that endometriotic implants, this endometriosis in your
abdomen often has higher densities of nerve fibers, so they're

(47:56):
more densely enervated than the surrounding tissue. They're also more
highly sensitized, so they actually respond at a lower threshold
of stimuli, which leads to both of those things combined
lead to an increase in pain signal transmission to the brain.

Speaker 1 (48:16):
Yeah, it's just like efficiency in signals traveling. They're wait, oh,
I've gone down this route before. Oh I know how
to get there. Oh, exactly way.

Speaker 2 (48:25):
Really, but also there are literally brain architecture changes that
happen with chronic pain, right, And this is something that
we do not fully understand, and people are finally just
now doing a lot of research.

Speaker 1 (48:43):
On finally just now acknowledging that it might be.

Speaker 2 (48:46):
Real, right, that it's not just psychosomatic, which is what
it was thought to be for the longest time. But
there are now a lot of really good studies on
this that the brain changes in relation to experience chronic pain.
And while there aren't as many studies on this in
relation to endometriosis related pain specifically or to pelvic pain specifically,

(49:11):
there are a few, and the ones that do exist
that have looked at people, for example, with dysmineria or
very painful periods. People who have chronic pelvic pain have
a lower peripheral input at which they experience pain and
a higher activity, higher activation of their central nervous system

(49:32):
in response to that pain. They are literally primed by
experiencing chronic pain to then experience more pain. Uh huh,
And yeah, I want to be clear that this is
not the same thing as saying like, well, you have
a low pain tolerance, right right, But that's not what
this means. This means that in response to pain, your

(49:54):
body reacts and changes and experiences a greater amount of
pain pain from the same stimuli as someone else because
of these changes to your brain.

Speaker 1 (50:05):
It makes complete sense, and it's so frustrating that it's
frustrating not widely known about or understood or taught or researched.

Speaker 2 (50:15):
Right yep. And it's also not saying, like I said,
that this pain is psychological in origin, because it's not. However,
it's also really important to point out just how comorbid
chronic pain conditions like endometriosis and mood disorders like depression
and anxiety are because this comorbidity having these two things

(50:40):
together leads to further exacerbation of the experience of pain
because of disruptions that depression or anxiety have on your
brain function.

Speaker 1 (50:53):
Right, and I know that, like there has been a
lot of oh, well, you know your depression or anxiety
is probably causing you your chronic pain, instead of maybe
considering that it might be that persistent, never ending, excruciating,
inescapable pain might lead to I don't know, say a

(51:16):
bit of depression or anxiety, Like, couldn't that be the case? Yeah?

Speaker 2 (51:21):
Yeah, and then both of those things change your brain
architecture to make them both worse, like a self fulfilling prophecy.

Speaker 1 (51:27):
Uh huh.

Speaker 2 (51:28):
Yeah, it's not great. Yeah, it's really not great. The
other biggest sequelle of endometriosis is infertility or difficulty conceiving.
And again here we don't know why. Huh really yeah,
we don't know if it's because of scar tissue that
can form, especially if it's from endometrioma's on the ovary,

(51:53):
like scarring the ovary or disrupting the number of ovarian
follicles that you have left, or if it can cause
scarring in the Filippian tubes, or there's some thought that
it's just from how much inflammation exists in the pelvis
because of endometriosis, because again, it's an open cavity between

(52:15):
your ovary and your Philippian tubes, so small space, but
it's all bathed in the same fluid. And so if
that fluid is full of inflammation, then how is that
egg supposed to make it safely into the uterus? Right,
So we don't really know the mechanisms, but endometriosis is
strongly associated with difficulty either getting pregnant or carrying a

(52:38):
pregnancy to term, but especially in getting pregnant. And let's
talk about something that can have a huge impact on
your mental and emotional well being, especially in a society
that often ties a uterus holder's worth to their ability
to conceive. Like, that's not small potatoes. That's a big deal, right, yep,

(52:58):
Yeah it is. What else do you want to know
about endometriosisarian, because that was a lot.

Speaker 1 (53:04):
I mean, I would ask about treatment, but.

Speaker 2 (53:08):
M want you want me to answer that, I'll will
answer it. Yeah, Okay, treatment is a mixed bag. Yeah,
So some people with endometriosis respond very well to hormonal
birth control, either combined contraceptives or something like an implant
or an iud, and that can be hugely beneficial. It

(53:32):
can lighten periods, it can make them stop altogether, it
can substantially reduce pelvic pain. But for anywhere from a
quarter to a third of people, that doesn't work at all,
or they can't even try it because of other comorbidities
or risk factors they might have, or maybe they want
to become pregnant.

Speaker 1 (53:53):
Or maybe hormonal birth control pills have just never really
have messed with other parts of their right. There is
day to day life.

Speaker 2 (54:01):
There's a lot of risk factors associated with birth control
as well. So for some then the next kind of
step can be what are called GnRH ganadotropin releasing hormone agonists,
which essentially put you into early menopause. That's what they do.

(54:21):
They block all of the hormones associated with the menstrual cycle,
like much more completely than combined contraceptives alone. But again
they have their very long list of side effects hot flashes,
skin changes, acne, mood changes. These can also affect your
bone mineralization and bone density, so they put you at

(54:43):
risk for like osteoporosis. And even these don't always work,
so then they're surgery, and surgery sometimes is still cited
as the kind of gold standard or the only quote
real way whatever to diagnose and on triosis, yeah, the
trend is moving away from that, thankfully, Okay, okay.

Speaker 1 (55:06):
And how much does that vary country by country.

Speaker 2 (55:08):
It's a good question that I don't know the answer.

Speaker 1 (55:10):
To, Okay.

Speaker 2 (55:11):
Yeah, But in general, the consensus in the medical literature
is moving away from surgery as a necessary diagnostic step,
because it used to be that you had to have
histological proof of endometrial tissue outside of the uterus to
call it endometriosis, and the only way you could get

(55:31):
that was from surgery. But now we have other methods
of being able to identify it, not only just with
like clinical history, but also with imaging modalities like MRI
and ultrasound, which can help to identify some kinds of endometriosis.
But surgery is often also seen as a treatment option,

(55:55):
So ablation or excision of the endometrio lesians and help
improve pain for a lot of people, but it can
also in some cases create more inflammation and more adhesions,
which can then exacerbate symptoms or possibly even lead to
more endometriosis lesions. If we think that it's inflammation that's

(56:18):
the driver rather than vice versa.

Speaker 1 (56:21):
That makes sense.

Speaker 2 (56:21):
Yeah, right. And hysterectomy or removal of the uterus with
or without removal of the ovaries along with it used
to be seen as curative, used to be done all
the time. Oh, still is done a lot. It is
not curative, but it is still done sometimes for people. So, yeah,

(56:47):
that's the treatment for endometriosis. It's not great. We don't
have a lot and especially when it comes to the pain.
Medicine today in twenty twenty one is bad at treating pain,
especially chronic pain. We don't have a lot of good
options for it. So that part of endometriosis is very

(57:07):
difficult if these other therapies aren't effective. So it's a bummer, Aaron.

Speaker 1 (57:15):
I mean, it's infuriating, it is.

Speaker 2 (57:20):
Yeah, And that was the longest biology section I've ever done.

Speaker 1 (57:25):
How there's a lot to unback despite the fact that
we are still left with so many questions.

Speaker 2 (57:31):
Right, we don't know anything, and yet I talked for
an hour, so erin, tell me all about it. How
did we get here? And why? Why?

Speaker 1 (57:40):
Why? Yeah? I will start on the longest history section
right after this break. Before reading about endometriosis, I figured

(58:23):
that it would be one of those episodes that followed
like a relatively straightforward formula, like what evolutionary significance does
it have? When was it first written about or first
identified as a medical condition? Who discovered it? How has
our knowledge about the pathophysiology changed over the last hundred years,
and how have we gotten better at treating it? Yeah,

(58:47):
and it's true, I did come across a lot of
information while researching that would answer those questions and fit
into that formula, But as I read more, I felt
like that wasn't what I wanted to talk about. What
I found more compelling and in my opinion, more important,
was how the entire story of endometriosis kind of perfectly

(59:09):
encapsulates many aspects of misogyny and gender inequality in medicine,
and the implicit and explicit biases that often keep women
from getting the healthcare they need and deserve. So that's
what I'm going to talk a lot about today. Good,
and before I dive in, I want to briefly discuss

(59:31):
the language I'll be using. The story of endometriosis involves
aspects of both sex aka common biological differences between males
and females, as well as gender aka the socially constructed
roles that vary between gender and that people identify with.
And as you mentioned, Aaron, endometriosis can affect people who

(59:53):
don't identify as women. It can affect people assigned female, male,
or intersex at birth, and its label as a female
only or women's disease can be very damaging and can
delay diagnosis even further for those that don't fit the
description of a typical ENDO patient, whatever that means. But
much of what I'll be talking about today is a

(01:00:15):
gendered issue. It has to do with the way that
women are perceived in medicine and how that impacts their treatment.
The fact that endometriosis primarily occurs in people assigned female
at birth has given rise to many of the social
issues and medical disparities surrounding endometriosis. Many of these issues,
such as how people experiencing pain are perceived by medical providers,

(01:00:39):
are discussed in the literature and in scientific studies using
the terms men and women without saying whether they mean
sex or gender, but generally we're speaking referred to cisgender people.
This is definitely a huge limitation of these studies and
of this discussion as well, especially since there are many
ways that trans or gender non binary people are treated

(01:01:02):
differently than SIS people in medicine, often in ways that
negatively impact their health. And I'm going to try my
best to be inclusive and not to ignore the experiences
of those people or exclude them from this history. But
studies examining those aspects are scarcer, Yeah.

Speaker 2 (01:01:20):
Like horrifically scarcer, as in almost non existent.

Speaker 1 (01:01:24):
Basically, yeah, almost non existent. Okay, So let's dive in.
Like I said, I want to talk broadly about medical
bias against women and what that means for endometriosis. But
in order to do that, I should first tell you
a bit about the history of endometriosis.

Speaker 2 (01:01:44):
Yeah, tell me a little right.

Speaker 1 (01:01:46):
Evolution first, Why does endometriosis exist? I mean, I have
no idea, let's be clear, but you know I have
some food for thought. Maybe so. As you said, Aaron,
endometriosis is often associated with infertility or subfertility. And while

(01:02:06):
we don't have a complete grasp on what causes endometriosis,
like you said, Aaron, heredity does seem to play a part,
and many diseases are caused by a mixture of genetic
predisposition and environmental factors, and it seems like in the
case of endometriosis, I've read that it's about fifty percent
genes and fifty percent environmental factors.

Speaker 2 (01:02:26):
Yeah, that's what I read as well.

Speaker 1 (01:02:28):
Yeah, so it seems like it should be selected against
at least a little bit just by virtue of the
fact that people with endometriosis tend to be less likely
to pass on those alleles or the predisposition for ENDO.
But that's not what the numbers seem to show. And
as I'm sure you'll talk more about, endometriosis is incredibly common,

(01:02:54):
Like I've seen estimates from ten to fifteen percent, and
those frankly seem like they could be conservative estimates or underestimates,
because I'm sure many people with endometriosis never get a
diagnosis for any number of reasons, such as whether they
can afford to see a doctor, to take time off
work and find reliable transport to a doctor, or even

(01:03:15):
if they can see a doctor, maybe they're just dismissed
or called dramatic, or maybe they just don't know that
debilitating periods aren't normal because periods are a taboo discussion topic.

Speaker 2 (01:03:26):
I feel like that's such an important one because it's
still so common today that people have no idea that
they don't have to exist or they shouldn't have to
exist in that much pain, Like that shouldn't be normal.

Speaker 1 (01:03:40):
I mean even periods themselves. Do we need to have periods? Like, no, no,
we don't. It's very interesting anyway. So yeah, and then
of course, on top of all of those factors, there
are these racial and economic disparities in obtaining a diagnosis
that are very frustrating. Doesn't really begin to cover it.

(01:04:03):
But yeah, but whether it's ten to fifteen percent or
likely much higher, endometriosis is extremely prevalent, and again more
than it seems like it should be, maybe for something
that can affect fertility. But remember that it's not just
your genes determining whether or not you get endometriosis. It's

(01:04:24):
also environmental factors. And it turns out that endometriosis might
not deserve the reputation it has for causing infertility. So
it seems like in a lot of the literature and
estimate around thirty percent is often reported, but more recent
studies put it actually lower at about ten to thirteen percent.

Speaker 2 (01:04:44):
Of people with endometriosis that will have infertility, got it right.
I think most of the most of this numbers that
I saw cited was like, of people with infertility, how
many of them have endometriosis, which is a very interesting
way to look at the statistics.

Speaker 1 (01:05:00):
It is, yeah, but yeah, so it seems like this
reputation that endometriosis has for basically being a one to
one infertility is not necessarily yeah the case. And I
also read a couple of papers that proposed an evolutionary
explanation for endometriosis. So I will admit I feel a

(01:05:21):
little bit out of my depth here, but I'm going
to just attempt to do my best. Essentially, in these papers,
which were from twenty twenty one, the authors suggested that
endometriosis and polycystic ovarian syndrome are opposites. Did you know
this paper?

Speaker 2 (01:05:36):
I saw that paper and I was like, ooh, what's
this baby? Interesting? Or and interesting?

Speaker 1 (01:05:42):
Mm hmmm mm hmmm. And so endo and PCOS are
at these like two extremes of a spectrum. This is
what the author suggested that is determined by levels of
prenatal testosterone exposure, with high prenatal levels equaling pcos and
low prenatal levels equaling endometriosis. So during development, if a

(01:06:07):
fetus is exposed to levels of testosterone that are outside
the quote normal range, certain traits associated with fertility or
fecundity are brought to their extremes. And the way that
I started thinking about this was like too much of
a good thing. So individually, these traits might be helpful
for fertility, but when you have too many of those

(01:06:29):
traits or they are expressed too highly, it can be hurtful.
So something like uterine contractions, it's great for when you
have fetus with a big head in there, but horrible
for when you have menstrual cramps that lay you flat.
Or like inflammation. Right, high levels like inflammation is good,
it helped what keeps us healthy. To high levels of

(01:06:51):
inflammation can be really, really bad. So taking all that together,
I feel like we can start to see why endometriosis
exists and why we see it in fairly prevalent numbers today.
So my next question is do we have more endo
today than we've had in the past. How long has
endometriosis been around. Endometriosis often gets called a modern disease

(01:07:16):
or a modern epidemic. Did you come across papers describing
it that way?

Speaker 2 (01:07:19):
No, but I'm not surprised, Okay.

Speaker 1 (01:07:22):
I don't like this for a number of reasons. First,
I don't love the term modern epidemic to describe endometriosis
because I'm not convinced that we have enough data about
historical rates to say whether there's an actual increase or
if it's just that we're more aware of it so
it's diagnosed more often. Second, is that calling it a

(01:07:42):
modern disease implies that it has emerged only recently, which
is untrue. Humans have probably been experiencing endometriosis for millennia,
as I'll get into and some people who defend the
use of the term modern to describe endometriosis say that
it's because it was only defeat find as a clinical
entity within the past one hundred to one hundred and

(01:08:03):
fifty years, and that definitive diagnosis by examining tissue under
a microscope was only possible in the last one hundred years.
So despite the existence of ancient medical texts describing abnormal
bleeding associated with pelvic pain, and infertility. Those descriptions apparently
aren't specific enough to be called endometriosis, which I'll grant

(01:08:26):
is fair. Retrospective diagnosis is always a.

Speaker 2 (01:08:30):
Problem, Yeah, and there's a lot of things that can
cause pelvic plane and abnormal bleeding.

Speaker 1 (01:08:35):
Absolutely, but I still think it's misleading to call endometriosis modern.

Speaker 2 (01:08:40):
I agree because I feel like.

Speaker 1 (01:08:41):
By that definition, there are a whole lot of diseases
that have likely been with humans for millennia, but quote
discovered only recently. Does a disease exist only when it's
been given a name and a clinical description, No, of course.
Not that said, it is possible that endometriosis is on

(01:09:04):
the rise, and we should look to see if it is,
and if it is the case, we should obviously try
to find out why. But endometriosis is an ancient disease.
There are descriptions of painful menstruation which could be endo,
dating back to eighteen fifty five BCE from ancient Egypt
and then again in ancient Greece in the Hippocratic text

(01:09:27):
from the fifth and fourth centuries BCE, describing menstrual dysfunction
as a cause of disease with pain and infertility. Resulting
if left untreated, and pregnancy as a possible cure, which,
despite not being true not being a cure, is often
still recommended today. In fact, I read in one book

(01:09:52):
for this episode that somebody commented on a Facebook page
for a group called Endoactive about this quote. My doctor
told me having a baby would help my pain. I'm
only eleven. What uh huh yeah?

Speaker 2 (01:10:10):
Oh no, mm hm oh.

Speaker 1 (01:10:14):
No erin, yeah, I've been mad for oh time. I've
been researching this.

Speaker 2 (01:10:21):
I'm not going to get over that one.

Speaker 1 (01:10:23):
I know, I know. Yeah. So In these hippocratic texts
are also the descriptions of the group's most susceptible to
these gynecological disorders, women who remained childless, young widows, and
virgins who had already menstruated but remained unmarried, some of

(01:10:45):
which sounds disturbingly familiar to the nickname that was given
to endometriosis in the nineteen sixties to the nineteen eighties
or so. The quote career woman's disease.

Speaker 2 (01:10:55):
Oh my god. I saw that in one paper and
I barfed in my mouth. I don't.

Speaker 1 (01:11:01):
Basically, it's like, well, you put off your child bearing
duties and rejected your social and gender role. So this
is what you get.

Speaker 2 (01:11:09):
It's the natural consequence.

Speaker 1 (01:11:11):
Uh huh. Obviously, the Hippocratic texts didn't refer to these
symptoms as endometriosis or as even like one specific disease,
but rather they were part of what was called hysteria,
after the Greek word for the uterus. And I'll talk
more about the history of hysteria and its wandering definitions

(01:11:32):
in a bit, but first I want to wrap up
the history of endometriosis. Even though they are tied together,
so many people who were diagnosed with hysteria probably had endo. Anyway,
from those ancient texts describing pain during menstruation and abnormal periods,
there doesn't really seem to be a ton of other
mentions of what could be endometriosis, not because people weren't

(01:11:56):
experiencing it, but likely because there was and is a
huge taboo surrounding menstruation. From Leviticus in the Old Testament quote,
if a woman has a discharge, and the discharge from
her body is blood, she shall be set apart seven days,
and whoever touches her shall be unclean until evening. Fast

(01:12:20):
forward to the first time that the word period was
said on television, like you know, like menstrual period nineteen
eighty five no Way by Courtney Cox in a tampon commercial.

Speaker 2 (01:12:35):
Wow, uh huh, so I'm sorry before that they had
tampon commercials without saying the word period.

Speaker 1 (01:12:40):
Or did they have tampon commercials?

Speaker 2 (01:12:42):
Maybe they didn't have tampons.

Speaker 1 (01:12:46):
The history of the tampon would be a fascinating one
to research.

Speaker 2 (01:12:49):
There is so we haven't even done just like regular menstruation.
I know, I know, you know anyways.

Speaker 1 (01:12:56):
Anyways, but we have been conditioned to think of periods,
these absolutely normal things, as gross and shameful when they
are neither, and that stigma surrounding periods can lead to
this damaging silence where because we are shamed from talking
about periods because it's not polite conversation, we don't know

(01:13:19):
whether our own periods are normal because we don't hear
the experiences of others.

Speaker 2 (01:13:25):
Right.

Speaker 1 (01:13:26):
The persistent labeling of menstrual periods as a distasteful and
shameful subject has profound implications for public health, and it
creates enormous inequities for people who menstruate. In most states, tampons,
for example, are subject to sales tax and Also, in
most states prisons charge inmates for menstrual products. I know,

(01:13:50):
there's just so much, so much, There's so much. But
circling back to the history part of this, maybe the
reason that endometriosis doesn't show up very much until basically
the eighteen hundreds is because the people writing medical texts
were primarily men, most of whom would have considered it
deeply improper and probably gross to ask a woman about

(01:14:13):
her periods. It's absolutely possible and likely that women discuss
periods amongst themselves, and there was probably a great deal
of knowledge held by women healers, which was mostly lost
as medical licensing laws came into effect, which both prohibited
them from practicing reasonable licenses are good and even applying

(01:14:36):
to medical school. If you weren't a white, wealthy man,
you weren't getting in. But with the increasing popularity of
autopsies in the nineteenth century, people begin linking more and
more signs and symptoms of disease with pathological changes in
the body. Karl Vaughan Rokotansky, whose name you may remember

(01:14:57):
from our pupil Fever episode, he was friends with and
worked at the same hospital as Semmelweis and he was
like the King of autopsies. He performed an incredible number
of autopsies. Rokitansky is usually credited with being the first
person to describe endometrio lesions. In the eighteen sixties, he

(01:15:18):
published a paper where he wrote that quote some fibrous
tumors of the uterus contained glandi like structures that resemble
endometrio glands end quote YEA. And there was a series
of autopsy studies done by other physicians from England, Germany,
Holland and Scotland also in the eighteen hundreds that went
further than Rokitansky to characterize the disease. But it wasn't

(01:15:43):
until nineteen twenty one that it was given the name
endometriosis by John Sampson, who is an American gynecologist who
also did the first systematic study of the disease and
proposed a hypothesis that is still the most popular today,
the mensru Back hypothesis. The papers published by Samson marked

(01:16:06):
a turning point in the history of endometriosis. They turned
it from a medical curiosity into a clinical entity, and
now that it had a name, it meant that information
could be compiled and shared under that name. Receiving a
diagnosis itself didn't do much good similar to today, in
many cases and often did harm because, like you said, Aaron,

(01:16:29):
usually a complete removal of the uterus was suggested as
the only effective treatment. A couple of decades after Samson's papers,
endometriosis of the lungs, large bowel, colon, rectum, bladder, lymph node, cervix,
round ligaments, and so on had been reported, and physicians
began to realize that it was a lot more prevalent

(01:16:50):
than Samson had thought, who described it as a rare disease.
Laparoscopic surgery began to be more regularly used for the
removal of lesions starting in around the late nineteen seventies
early nineteen eighties, But frankly, is as you went over,
not a whole lot of progress seems to have been

(01:17:10):
made since. Like, yes, we know more about endometriosis now
than we did one hundred years ago, but we're still
limited in treatment and hugely lacking in awareness among both
medical professionals as well as the general public, which has
led in part to the ridiculous delay in endometriosis diagnosis.

(01:17:31):
I mean, I've seen estimates of six to twelve years.

Speaker 2 (01:17:35):
Yeah, I've seen even higher sometimes like ten to fifteen
years lag between symptoms and diagnosis, right.

Speaker 1 (01:17:42):
And this delay is of course not equal across racial
and economic groups, with people of color and those in
lower economic classes experiencing a much longer delay. So what
I wanted to take time to explore in more depth
was why this damaging diagnostic delay exists. Why is it
six to twelve years or ten to fifteen years. Why

(01:18:06):
do we still not seem to know very much about endometriosis,
what causes it, how to treat it, why do some
people get it and others don't? And exploring those questions
kind of led me into reading more generally about the
pervasive mistreatment and under treatment of women by the medical system.
Right off the bat, I want to mention the books

(01:18:27):
that I read for this because I'll probably be quoting
from them a lot, one in particular, and they are
phenomenal and I learned so much and got so angry
along the way. Doing Harm by Maya duson Berry and
Pain and Prejudice by Gabrielle Jackson are both nonfiction books
about the systemic issues in medicine and how women are treated.

(01:18:50):
Ask me About My Uterus by Abbie Norman and Giving
Up the Ghost by Hillary Mantel are memoirs about endometriosis.
Hillary Mantel's book includes a section on her experience with enemytriosis.
It's not entirely about endo. I loved them all and
you should read them all, Okay. So the way that
I wanted to structure this discussion is taken directly from

(01:19:13):
Maya Dusenberry's Doing Harm. In this incredible book, she lays
out what she calls the knowledge gap and the trust gap.
The knowledge gap is basically that there isn't as much
scientific and medical knowledge about women's bodies and health issues
than there is about men's. And this goes all the
way from the very basic biomedical research only including male

(01:19:36):
animals and studies all the way to women being underrepresented
in clinical trials and diseases specific to women receiving less funding.
The trust gap is simply that quote women's accounts of
their symptoms are too often not believed. The trust gap

(01:19:57):
and the knowledge gap don't operate independently. They rea enforce
each other to perpetuate the mistreatment and under treatment of
women by the medical system. Quote from Dusomberry, women's symptoms
are not taken seriously because medicine doesn't know as much
about their bodies and health problems. And medicine doesn't know
as much about their bodies and health problems because it

(01:20:19):
doesn't take their symptoms seriously end quote. Dusomberry points out
that these issues aren't about a few bad apples in
the medical system mistreating women, but rather the unconscious bias
that is structurally embedded in medicine. So let's explore these
two facets in a bit more depth, starting with the

(01:20:41):
knowledge gap. As with any structurally embedded issue we discuss
on the podcast, the knowledge gap has deep roots, stemming
from the hundreds of years during which women were seen
as biologically inferior to men and whose bodies were either
not worthy of study or improper to examine. They were studied,
for instance, by the so called father of gynecology, Mary

(01:21:04):
and Simms, who built the profession on the backs of
enslaved women. They were essentially tortured, given no anesthesia or
pain relief, seen to be subhuman. The ideal baseline that
defined what was medically quote normal or human was a
white adult male, and let's be honest, a wealthy one.

(01:21:25):
This is pretty clear when we look at how menstrual
periods were described in medical texts throughout the eighteen hundreds
as times of ill health. Anytime a woman was either pregnant, menstruating,
or in menopause, she was considered unwell and her thoughts
scattered and disturbed, which was used in arguments against women

(01:21:47):
being allowed to attend universities and higher education. Anyway, was
thought to atrophy the uterus.

Speaker 2 (01:21:54):
Atrophy the uterus. I can't have that absolutely though. Brain thinking.

Speaker 1 (01:22:02):
And this perception of periods, of course, didn't just disappear
suddenly in nineteen hundred. There's even a textbook from the
nineteen seventies that describes dysmenorrhea as a symptom of a
personality disorder.

Speaker 2 (01:22:18):
I don't have any words. I'm just going to keep
fish mouthing over.

Speaker 1 (01:22:25):
So that just made me think that there are probably
some physicians still practicing today that may have been trained
on that information.

Speaker 2 (01:22:34):
Oh definitely, yeah.

Speaker 1 (01:22:38):
Up until at least the nineteen nineties. Although you could argue,
probably successfully that it's still the case today. It wasn't
that science knew nothing about women's bodies and health. It
was just that they knew a lot less than they
did about men's and let's look at why this is.
As I mentioned earlier, the medical licensing laws enacted in

(01:22:58):
the eighteen hundreds in effect excluded women and people of
color from practicing medicine and contributing to the field. Those
that remained were white, wealthy men, and so a white
male as the baseline for comparison, and the health ideal
became entrenched in medical training and medical knowledge well into
the twentieth century. The nineteen sixties and nineteen seventies saw

(01:23:20):
a great deal of change in terms of medical ethics,
as things like Tuskegee and tholidamide revealed the enormous failings
of informed consent and protections for vulnerable individuals. Many of
these developments in drug safety studies were overwhelmingly positive in
terms of preventing people from being coerced into unsafe studies

(01:23:41):
and being harmed, But one unintended consequence was when protection
turned paternalistic, essentially preventing women from being included in drug
trials simply because they were women, or, more specifically, in
the nineteen seventy seven FDA policy excluding women of quote
child bearing potential from early phase drug studies. This meant

(01:24:07):
anyone who potentially could get pregnant.

Speaker 2 (01:24:12):
Right, anyone with a uterus that was presumed to be working, right, Yeah, yeah,
any does any of.

Speaker 1 (01:24:20):
Them, any of them, doesn't matter, doesn't matter. This is
a complicated subject, of course, because ensuring that no coercion
occurs with informed consent is still tricky, and there are
potential risks associated with participating in clinical trials. But also
without the inclusion of women of quote child bearing potential

(01:24:43):
in these studies, how would we know if that drug
is safe or effective for them. This is especially problematic
and tricky in terms of pregnant people, where it's kind
of like a rock and a hard placed situation, basically
forcing a choice between including pregnant people in clinical trials
which could put the fetus and the person at risk,

(01:25:04):
or in effect testing it out on them later in
an uncontrolled fashion, hoping that the studies showing it safe
in people who are not pregnant will mean that it's
safe for pregnant people. It's complicated, and I'm not going
to go into it here because I just don't have
the background knowledge to do so. But one thing that

(01:25:25):
does seem to be clear is that there is underrepresentation
of women and pregnant people in clinical trials.

Speaker 2 (01:25:33):
That's why all drugs during pregnancy just have these like
wacky like, well, we don't know if it's safe, but
we don't know if it's harmful, so it's probably fine.
Like the scales that you use to define whether or
not something is safe in pregnancy or not the same
as when you're not pregnant.

Speaker 1 (01:25:51):
Uh huh. It's it's far from a perfect system and
it means a lot of work.

Speaker 2 (01:25:56):
Yeah, but the lack of.

Speaker 1 (01:25:58):
Inclusion of women in medical studies can't all be chalked
up to this protective policy. Women were also explicitly excluded
simply because they were women. Explanations ranged from, well, men
and women are so similar that results from an all
men's study can be extrapolated to women. To women's menstrual

(01:26:19):
cycles and hormonal shifts could confuse the study results. You
can't have it both ways exactly. A. If results from
men only studies could be extrapolated to women, then why
weren't there any all women studies that were extrapolated to men. B.

(01:26:41):
If there were no meaningful differences between men and women,
why not include them both in the clinical trial. See
if menstruation could significantly affect the results of a drug trial,
why on earth is it not a reason then to
include women rather than to execs gluede them. And the

(01:27:02):
answer to all of these here's another quote, And I
just I should say that unless I say differently. These
quotes are from doing harm by Maya Dusonberry quote. In short,
studying only one sex was cheaper and easier, and men
were the chosen ones because women's bodies were thought to
be too complicated.

Speaker 2 (01:27:22):
Yeah.

Speaker 1 (01:27:23):
Yeah, And there's also the matter that the medical community,
which since its infancy had been comprised primarily of men,
either consciously or subconsciously, felt that to know the health
effects on men was enough, right, Like, well, we know
it on men, so that's that's good, right, Like.

Speaker 2 (01:27:43):
Yep, that's all we need.

Speaker 1 (01:27:45):
And maybe it wasn't this malicious thing. Maybe it just
wasn't even thought about women. Didn't women didn't even enter
into the consideration, which feels malicious, even though I'm saying
it as it wasn't malicious. I don't know. But it
wasn't until the late nineteen eighties that enough women were
involved in the medical community to bring these enormous gender

(01:28:07):
disparities in medical research to light. At this time, a
group of scientists who were women formed what is now
known as the Society for the Advancement of Women's Health Research,
and they demanded an audit by the Government Accounting Office
the GOAO of the NIH's research efforts to see how
well they had stuck to the nineteen eighty five Policy

(01:28:28):
for the Inclusion of Women in Research. This GOAO report,
which was published in nineteen ninety, was staggering. They had
done next to nothing. In most of the studies that
the NIH funded. They couldn't say whether women were included,
or if they were how many. So far, I've talked

(01:28:52):
about this more generally, right, more and more descriptive, abstract
women are excluded from studies. Let's get into some more
solid examples that illustrate the knowledge gap. For example, there's
a famous study called the Baltimore Longitudinal Study of Aging
that was started in nineteen fifty eight and aimed to

(01:29:12):
study quote, normal human aging. This was the one that
found that a baby aspirin a day could be protective
against heart disease. You know that, Like now, that's conventional
wisdom or whatever. Yeah, that study didn't include women, included
thousands of men. It didn't include women for twenty years.

(01:29:33):
Another large scale study started in nineteen eighty two, whose
aim was to study the effects of dietary change and
exercise on heart disease, included thirteen thousand men and zero women,
despite the fact that heart disease is and was then
one of the leading causes of death in women. And

(01:29:56):
then there's this, I think it takes the cake quota
directly again from doing harm by Maya Dusonberry. There's a
quote and then a quote within a quote. So the
inception of quotes quote, and NIH supported pilot study from
Rockefeller University that looked at how obesity affected breast and

(01:30:19):
uterine cancer didn't enroll a single woman.

Speaker 2 (01:30:24):
I'm sorry, breast and uterine cancer.

Speaker 1 (01:30:29):
It is true that people assigned male at birth do
develop breast cancer.

Speaker 2 (01:30:34):
Uh huh, and uterine cancer, Aaron, I.

Speaker 1 (01:30:37):
Don't think so.

Speaker 2 (01:30:38):
Yeah, No, you need a uterus for that.

Speaker 1 (01:30:41):
Yeah, continuing the quote, as Representative Snow noted dryly at
the congressional hearings. Quote, somehow, I find it hard to
believe that the male dominated medical community would tolerate a
study of prostate cancer that used only women as research
subjects and quotes. I can't That one just echoed in

(01:31:10):
my head for days. Eh. Nearly anywhere they looked there
was a striking lack of inclusion of women and enormous
consequences because of that. Biological differences between people assigned male
at birth and people assigned female at birth have historically

(01:31:30):
been used to claim inferiority or superiority while failing to
examine the potential health impact of that difference, such as
in the way drugs are metabolized, which is impacted by
fat distribution and hormones, among other factors. So when women
aren't included in drug trials, should we be surprised by

(01:31:50):
the finding that women are quote fifty to seventy five
percent more likely than men to have an adverse drug reaction? Like,
that's not a surprising finding, it's horrible.

Speaker 2 (01:32:02):
Well, and I also just wonder how many of those
adverse drug reactions are often just passed off as being oh, well,
like not real, you know, uh huh, discounted.

Speaker 1 (01:32:14):
I'm sure many are. Yeah, the dosing of too many
drugs has been determined by how it affects men's bodies
and also overall like people within a certain BMI range.
Or take chronic pain for example, which women are known
to be disproportionately affected by, and studies indicate that women

(01:32:35):
experience pain differently than men. And again, these studies didn't
make the distinction between whether they were talking about sex
or gender or whatever. Despite these pain differences, there was
a study from two thousand and five that found that
almost eighty percent of animal pain studies used male animals only.

(01:32:58):
And while the lack of sex analysis in animal studies
of all kinds is hugely problematic, it really only captures
one aspect of the knowledge gap. These studies don't take
into account the gender bias and social factors that influence
health and are hugely important to examine. The nineteen ninety
GAO report did change some things for the better, but

(01:33:20):
we're still not even close to equitable, and many studies
simply fail to report any sex or gender analysis of results.
There have been suggestions to require the inclusion of such
analysis for publication in peer reviewed journals, but that has
been met with some resistance for vague scientific reasons, whatever
that means. But still, even though things are getting better,

(01:33:43):
there is a huge lag time in between when those
studies are conducted, to when the results are analyzed and published,
to when it becomes presented to the interested field, to
then the wider community, to then when it becomes included
in textbooks, then when it trickles out to the rest
of the public. Let's illustrate. Picture someone having a heart attack. Okay,

(01:34:08):
what do they look like, what are they doing? What
are the signs and symptoms they seem to be feeling.

Speaker 2 (01:34:15):
This is a really good example.

Speaker 1 (01:34:16):
Arin I love this example. Is it an older man,
probably an older white man, clutching at his left arm
and his chest.

Speaker 2 (01:34:27):
Salt and pepper hair, salt and pepper hair.

Speaker 1 (01:34:31):
Maybe he's got like a short sleeve button up shirt on.

Speaker 2 (01:34:34):
Definitely, uh huh.

Speaker 1 (01:34:35):
It was like sweating a lot.

Speaker 2 (01:34:37):
Sweaty, super sweaty. He describes a pressure in the center
of his chest which radiates to his left arm and
maybe up into his jaw. He clutches at his chest
and then gasping for breath.

Speaker 1 (01:34:53):
Yeah, how many of you pictured a woman with maybe
some uncomfortable back pain or flu like symptoms?

Speaker 2 (01:35:03):
Did anyone anybody?

Speaker 1 (01:35:05):
Maybe? I thought there are some out there for sure,
because much of the early research on heart attacks was
focused on men. That's the search image we have, and
it can be deadly. Like when a study from two
thousand found that quote young women and I think by
this was meant like under the age of fifty are

(01:35:26):
seven times more likely to be sent home from the
hospital in the middle of having a heart attack. Seven
times those have fatal consequences.

Speaker 2 (01:35:38):
There, Oh god, Aaron, there's so many good examples of this.
Do you know about the testicular torsion. One testicular torsion
It's when your testicle twists on itself and it can
cut off the blood flow. It's an absolute emergency. Causes
excruciating pain, okay in the testicles. And they say time

(01:36:02):
is tissue. You have six hours to like diagnose and
treat testicular torsion, and people are really good at it.
There's a lot of studies in hospitals, like the time
from into the emergency room to treatment and like into
the or it's super short. Ovarian torsion.

Speaker 1 (01:36:18):
I knew you were gonna say that.

Speaker 2 (01:36:22):
Same exact thing. Okay, You're ovary twists around itself. The
time from diagnosis to OAR is like I think at
least twice as long, if not missed entirely, like it
is staggering.

Speaker 1 (01:36:36):
Oh yeah, yeah, there are, I mean, honestly, just grab
bags full of examples about the diagnostic delay for anything,
the treatment delay, what kind of treatment that's received. I mean,
in general, men are seen as sick while women are

(01:36:56):
seen as stressed. And this, all of these examples that
you and I just sort of went through, these are
tied to both the knowledge gap and the trust gap.
Medical doctors only know what heart attacks look like in men,
and they are disinclined to believe that women's symptoms are real.
So now let's get into the trust gap. If you

(01:37:20):
thought the knowledge gap had deep roots, wait until you
hear about the trust gap. In order to explain these roots,
I'm going to take us through a brief history of hysteria,
which was first described in ancient Egypt and got its
name from ancient Greece. Like I said, from the Greek
word for uterus histra. What is hysteria. It's basically the

(01:37:42):
idea that a woman's health and mental status is tied
directly to her uterus, and that all disease in a
woman came from the uterus wandering around the body like
literally wandering, but just like these restless uteri. The definition
of hysteria has also wandered substantially throughout history. In ancient Greece,

(01:38:07):
in hippocratic texts from around the fifth century BCE, it
seemed to be thought of as an organic biological process,
one which was likely to happen if marriage was put
off for too long or if a woman didn't get
pregnant early enough after puberty. In Europe and the centuries after,
throughout the medieval period, the meaning changed and became more

(01:38:28):
spiritually based, and it was thought that the uterus could
be inhabited by a demon or evil spirits, or possessed
via witchcraft, and the uterus became the scapegoat for any
disease or complaint that a woman had. In hysteria, the
catch all diagnosis.

Speaker 2 (01:38:45):
The poor uterus.

Speaker 1 (01:38:46):
It's so maligned erin it is it is, yeah, it
hasn't gotten that much better, but it's find somewhat yeah.
And this quality of hysteria as a disease of exclusion
it was useful to physicians, especially as the field of
medicine itself evolved. I've talked before on this podcast about

(01:39:10):
how medicine changed substantially when measuring tools began to be
introduced and measurements began to be compiled for certain diseases
like blood pressure. You know, what's a normal range, what's not?
Heart rate, red blood cell count, body temperature, etc. All
these things. I think in our sickle cell episode, I
talked about how these tools, in addition to medical specialization,

(01:39:34):
led to medicine shifting to be less about the person
and more about the body or a part.

Speaker 2 (01:39:42):
Of the body.

Speaker 1 (01:39:44):
It also led to this important distinction between signs and symptoms.
Signs being something that someone who is not the patient
can measure or see or feel. Symptoms are the things
that only the patient can feel and describe are objective.
Symptoms subjective. As the ability to detect disease signs became

(01:40:06):
more refined, diagnosis increasingly relied on signs rather than symptoms,
and a physician could listen less or not at all
to their patient and still end up successfully treating them,
offering a not so great precedent. But it also meant
that if there were no signs or the signs didn't

(01:40:27):
tell them anything, they could and often did, disregard the
symptoms as hysterical In of the eighteen hundreds, Jean Martin
Charcot tried to reclassify hysteria as a neurological disorder rather
than a personality flaw, believing that believing that the ovaries

(01:40:48):
rather than the uterus, diverted energy from the brain during menstruation, pregnancy, lactation, menopause, ovulation, etc.
And that the brain drained of all this energy could
barely function and left women weak.

Speaker 2 (01:41:05):
Poor things just all the time.

Speaker 1 (01:41:08):
Plaques and lesions that Charco found around the ovaries and
uterus during autopsies confirmed his hypothesis to him and led
to an increase in gynecological surgeries such as the removal
of the ovaries, the uterus or the clitorists surgeries which
were permanently damaging, if not fatal, which around fifty to

(01:41:32):
seventy percent were in like the mid eighteen hundreds. I'm
not going to get into Charco's ovary presser, but suffice
it to say that he carried out extensive medicalized torture
on women and asylums to try to confirm his ideas
about hysteria. Yea yea. From a wandering uterus to demonic

(01:41:59):
possession to a neurological disease. Hysteria had one more major
transformation to undergo, and it was this final one that
left such an enduring mark on how women are perceived
in medicine today. Enter Freud, one of the worst, one

(01:42:23):
of the worst. I'm going to try not to talk
about him too much.

Speaker 2 (01:42:26):
Simply because, like any more airtime.

Speaker 1 (01:42:29):
Well, I think he's important to talk about because of
the damage that he's done, but I also want to
get past him because there's just there's not enough time
in the world to do all of this. So Freud
initially jumped on the Charcot train of hysteria as a
neurological disorder, but then changed his mind, turning it into

(01:42:52):
a disease that was entirely psychological, often attributed to the
underdevelopment of libido or sexuality, or the rejection of feminine
values or feminine traits. Cured through talk therapy. What this
did was turn real things that women were experiencing pain, fatigue,

(01:43:15):
heavy or irregular periods, infertility, even into something that she
was doing with her mind. It's all in your head.
This probably sounds familiar to many people listening today who
have maybe been told something similar by a doctor they
thought they could trust to listen. Because despite how this

(01:43:36):
story is sometimes told, hysteria didn't disappear after Freud. It
may have fallen out of fashion and lost credibility as
a medical diagnosis a bit. But number one, it wasn't
actually removed from the DSM, the Diagnostic and Statistical Manual
of Mental Disorders until nineteen eighty and number two, it

(01:44:01):
never really went away, but was rather repackaged. Out of
this umbrella term hysteria came endometriosis MS, chronic pelvic pain,
many autoimmune diseases, samatitization, psychogenic illness, medically unexplained symptoms, so

(01:44:22):
many things. Freud's transformation of hysteria into a psychological disorder
turned women into unreliable sources on their own body. Essentially,
a woman is thought to be lying about her symptoms
unless there is observable proof to the contrary, or her
symptoms are real but psychogenic unless you can prove otherwise.

(01:44:47):
A gynecology textbook from nineteen seventy one said that quote
many women wittingly or unwittingly exaggerate the severity of their
complaints to gratify neurotic desires end quote, and in the
same textbook that morning sickness quote may indicate resentment, ambivalence,

(01:45:09):
and inadequacy in women ill prepared for motherhood. Oh as
if you needed more things to get angry about.

Speaker 2 (01:45:20):
Right, and I can't rage in front of the microphone.

Speaker 1 (01:45:28):
It's it all explains so much about today and how
women are treated. Women began being seen as mentally ill
rather than physically sick, and throughout the twentieth century the
rate of psychogenic illness diagnoses increased enormously. If you were

(01:45:49):
experiencing pain and complained too little, you weren't taken seriously
because you weren't experiencing enough pain. But if you complained
too much, you were labeled as an exaggerator, as dramatic,
as crazy. One proponent of psychogenic diagnoses says that quote
the vehemence with which many patients insist their illness is

(01:46:11):
medical rather than psychiatric, has become one of the hallmarks
of the conditions. So like, the more you say no,
this is a real pain, the more likely you are
to be diagnosed with the psychogenic illness.

Speaker 2 (01:46:26):
Yeah, yeah, what.

Speaker 1 (01:46:29):
There are scientific studies backing up these implicit gender biases
in medicine, and it's not just male doctors that are
mistreating women. Women, on average are more likely to report
pain and less likely to receive pain treatment. This is
not just a gendered issue, of course, but a racial
one as well, with people of color incredibly undertreated for pain.

(01:46:53):
One study showed that after undergoing a coronary artery bypass graft.

Speaker 2 (01:46:57):
Oh my gosh, I hate this study.

Speaker 1 (01:47:00):
Uh huh, men were more likely to receive painkillers, while
women were more likely to receive sedatives. A study from
two thousand and six by Kiera Monte at All found
that when med students and residents were presented with the
description of a patient experiencing symptoms, they initially diagnosed these

(01:47:21):
patients similarly, regardless if the patient was described as male
or female, but if a stressful life event was added
to the description quote, only fifteen percent of medical students
or residents diagnosed heart disease in the woman, compared to
fifty six percent for the man, and only thirty percent

(01:47:43):
referred the woman to a cardiologist compared to sixty two
percent for the man. That quotes from pain and prejudice,
the explanation given for the woman's symptoms turned from biological
to psychological, and there was no difference in the results
based on the gender of the doctors. It seems that

(01:48:05):
too often, when physicians meet with the patient, they see
the diagnosis in the identity of the patient, based on
implicit biases built into the medical training system. If you're
a woman, it's in your head or your uterus. If
you're a black person, you're drug seeking. If you're trans
and you're on hormone therapy, it's because of the hormones.

(01:48:26):
If you're fat, it's because you need to lose weight.
If you've ever been diagnosed with anxiety or depression, clearly
that's what's causing your pelvic pain or your chronic fatigue.
It's rarely that endometriosis could be a source of anxiety
or depression right Instead, it's depression causing your pelvic pain.
Take this anecdote paraphrased from doing harm. There was an

(01:48:51):
eleven year old girl who had severe abdominal pain and nausea.
She went to the er. The doctor told her it
was menstrual cramps, despite the fact that she had not
yet gotten her period. Ever, the pain didn't go away,
so the next day, in agony, she had to be
rushed back to the er. And at this point her mom,

(01:49:11):
who was a physician, demanded an ultrasound, and they found
the largest unruptured appendix that the surgeon had ever removed.
Would that have happened if it had been eleven year
old boy instead of an eleven year old girl?

Speaker 2 (01:49:28):
No, probably not.

Speaker 1 (01:49:31):
Did the doctor even ask have you ever had your
period before? Does this feel like period crabs?

Speaker 3 (01:49:37):
Like?

Speaker 1 (01:49:38):
Are period crabs so bad that you should go to
the er?

Speaker 2 (01:49:41):
No? They shouldn't be, right, Like, if.

Speaker 1 (01:49:44):
They are that bad and you're in the er, you're
there for a good reason. Yeah, you're not just they're
not just oh well, you know, deal with it, Take
some ibuprofen and go home. And that's with an observable,
detectable condition, right like you could look to find the
unruptured appendix. Women who seek medical care for a condition

(01:50:06):
that's not objectively observable or measurable or easily measurable. And
as you went into Aaron boy, we are inadequate at
describing and measuring pain. I mean absolutely inadequate. These these
mystery women are often a source of frustration for physicians,

(01:50:27):
and they're dismissively called malingerers. Never wells et cetera. Concern
turns to resentment as nothing seems to work and the
answer to the problem seems forever out of reach. I
can't see anything wrong with you, so there must not
be anything wrong with you. A physician's sense of self

(01:50:47):
worth shouldn't be tied up in having an answer or
the right answer. There's an incredible power in empathy in
saying I don't know, but let's find out. So where
does that all leave us with endometriosis. We have come
a long way since the early days of hysteria and endometriosis,

(01:51:07):
and the people who have made the biggest strides in
raising awareness of endometriosis are patient advocacy groups, people who
have had to become experts in a disease that their
own physicians often failed to communicate with them about. But
we haven't come nearly far enough. Stereotypes about endometriosis have
persisted long after being disproven, such as endometriosis is rare

(01:51:32):
in women of color, or only happens to women who
put off marriage and childbearing. These stereotypes, combined with the
outrageous lack of knowledge about how endometriosis actually works and
the tendency for physicians to dismiss or downplay the pain
experienced by women. These all contribute to the long, often

(01:51:52):
excruciating years people have to wait for a diagnosis, and
still endometriosis is too often made to be about a
woman's social or gender role. Endometriosis can absolutely impact a
person's fertility, and for someone who wants or thinks they
might want to have children, that's hugely important. But often

(01:52:16):
fertility is preserved as a default without asking the patient
whether or not subfertility or infertility would be acceptable if
it meant reducing the pain.

Speaker 2 (01:52:26):
Yeah.

Speaker 1 (01:52:27):
And a two thousand and three study found that women
who sought out doctors because of infertility received a diagnosis
of endometriosis in half the time that women complaining of
menstrual pain did.

Speaker 2 (01:52:40):
It's not surprising and infuriating, exactly like infertility matters, but
it shouldn't have to cause infertility to matter. Yes, that's
so frustrating.

Speaker 1 (01:52:53):
Yeah, yeah, And I think a large part of this
is due to the fact that men instral pain is
so normalized, it's so accepted, and it's reinforced intergenerationally. Yep, totally,
It's not viewed as interesting or worthy of research. Despite
being described for over one hundred years and affecting approximately

(01:53:16):
the same number of women as diabetes, end, demitriosis gets
about five percent of the research funds that diabetes gets.

Speaker 2 (01:53:24):
I almost use diabetes as my expoint. What did you use,
I'm going with breast cancer. Oh okay, it's not too far.
I'm curious.

Speaker 1 (01:53:33):
Yeah, but periods aren't fit for polite conversation. There's simply
the price of being a woman, right, No, not true.
Periods shouldn't be painful. People don't even need to have periods,
and if there is pain, it should be believed and understood.
Let's talk more about periods. Let's talk about consistency. Let's

(01:53:55):
talk about the number of times you have to empty
your diva cup or change your pad, or change your
tamp on brands do like the best? Are there any
things that you do that you help your period and
make you feel better? Like all these things so important?

Speaker 2 (01:54:10):
Ah? Okay, ye say it erin.

Speaker 1 (01:54:14):
I want to end, finally, after this very long history,
with a quote from of course again Maya Dusonberry from
her book Doing Harm. Quote. There is always a gap
between when a symptom begins and when it is medically explained.
It is unreasonable to expect that doctors who are fallible

(01:54:37):
human beings doing a difficult job can close this gap instantaneously,
and given that medical knowledge is and probably always will
be incomplete, they may at times not be able to
close it at all. But it shouldn't be unreasonable to
expect that during this period of uncertainty, the benefit of

(01:54:58):
the doubt be given to the patient. The default assumption
be that their symptoms are real, their description of what
they are feeling in their own bodies be believed, and
if it is medically unexplained, the burden be on medicine
to explain it. Such basic trust has been denied to
women for far too long. End quote. So erin, I

(01:55:23):
have a feeling I might just get angrier. But can
you tell me where we stand with endometrios's today?

Speaker 2 (01:55:34):
I can try Aaron, Okay, maybe we should take a
break first, well, last break break. Almost every single paper

(01:56:08):
that I read, and I read a lot of papers
universally cited the statistic that ten percent of women of
child bearing age have endometriosis. And that's it. That's that's it.
That's the number that I have.

Speaker 1 (01:56:27):
Ar Okay, it's and these numbers, like where are these
papers from? And so would those diagnoses have been based
on surgical.

Speaker 2 (01:56:42):
Or yeah, I basically only looked at papers from twenty
ten and sooner, so like within the last ten years, okay,
and universally that is what they all said. I have
found no papers that tried to dig deeper and really
get it sense of like are these numbers changing, are
we seeing it more? Et cetera like? And was really

(01:57:09):
frustrating is that none of the papers dug down into
like what what does that actually mean? Because people who
are not child bearing age can have endometriosis. Lots of
people with the uterus that aren't women of child bearing
age can have endometriosis, And so does that ten percent

(01:57:33):
actually mean like ten percent of people with a uterus
have endometriosis? Or is that number higher because people with
the uterus maybe had entometriosis when they were younger and
now they're older, the symptoms have gone away, but those
people still count, right, So I don't have an answer

(01:57:53):
for you.

Speaker 1 (01:57:54):
Right, Or what about people who have endometriolesians and might
not have symptoms that have led them to go seek
a diagnosis?

Speaker 3 (01:58:01):
Right?

Speaker 2 (01:58:01):
And that's what's so infuriating is that this ten percent
number assumes that it includes those people. Yeah, and so
it says that like thirty to fifty percent of those
ten percent will then have pain from this enometrosis, which, like, uh,
give me strength, I doubt no. But statistics also cite

(01:58:24):
that upwards of sixty percent of women, by which I
assume what they mean is sixty percent of people with
a uterus that suffer from chronic pelvic pain have endometriosis
as the likely cause of this pain. And those statistics,
both of them, no matter how flawed they are, are

(01:58:48):
incredibly high.

Speaker 1 (01:58:50):
I mean, staggering.

Speaker 2 (01:58:51):
Ten percent, even if we assume that ten percent of
people with the uterus is the real number, ten percent
of people with uterus. Okay, let's compare that, Aaron, you
mentioned diabetes. Almost used that. But let's talk about breast cancer,
shall we. Thirteen percent of women in the US will

(01:59:13):
develop breast cancer. Thirteen percent. That's really close to ten percent.
We have a whole month dedicated to breast cancer, don't we.

Speaker 1 (01:59:24):
We have one for endometriosis too.

Speaker 2 (01:59:27):
Oh really, but no one's heard of it.

Speaker 1 (01:59:28):
Yeah that's fair.

Speaker 2 (01:59:32):
But everybody knows about breast cancer. Everybody knows how important
breast cancer is. Everybody knows somebody who has survived breast cancer,
or everyone has lost someone from breast cancer, right, and
so many people have no idea what endometriosis is, let
alone care enough to, I don't know, like encourage funding

(01:59:55):
of research for it. Uh huh. And I think I
think this is now my soapbox. This is for a
lot of reasons that Aaron, you really kind of focused
on so many of them, and if we really drill
down to it, like it comes back to the patriarchy,
as it always does. But at its core it also

(02:00:18):
is because I think endometriosis is classified in all of
the literature as a quote benign condition. What so, endometriosis
is classified as a quote benign condition.

Speaker 1 (02:00:33):
And so by this means it doesn't kill you.

Speaker 2 (02:00:35):
So what this is in contrast to is a malignant
condition such as cancer, And what that means is, yes,
in general, a benign condition is not going to kill
you if left untreated, at least not directly. Cancers which
are malignant invade and metastasized, that is, they spread in

(02:00:59):
a way that, if left untreated, is often fatal. Now
I can see your face aerin endometriosis is really really
interesting because it in fact does metastasize. It can metastasize
in a way right. It can be found well outside
the peritoneal cavity, and by definition, it is tissue found

(02:01:21):
outside where it's supposed to be. And in the case
of deeply infiltrating endometriosis, it does invade deeper tissues in
the same way that cancer can. But endometriosis causes pain,
causes suffering, causes infertility, and that, my friends, is seen
as benign. It can invade your bowels and cause obstruction,

(02:01:48):
but it usually doesn't. That's uncommon. It can invade your
bladder or your urrots and cause obstruction. It can cause
destruction of your urrotors, but it doesn't often. And because
because it's a histologically recognizable tissue type, and because it
generally quote unquote doesn't invade to the extent that a

(02:02:09):
cancer would, and because it generally subsides after menopause, after
the withdrawal of those hormones, it is quote benign. Okay,
it's clearly nothing of the sort.

Speaker 1 (02:02:25):
Obviously, So in non medical language, benign is like not harmful,
not bad. So is there a different interpretation in metal.
I'm just trying to give that a little bit of
the benefit of the doubt, because this is so staggeringly appalling.

Speaker 2 (02:02:42):
It is it does mean in the medical sense, in
that it is not a malignant condition.

Speaker 1 (02:02:48):
But I mean, does the use of the word benign
in medicine then influence people who are practicing medicine to
view a condition as benign as in the popular interpretation
of the term.

Speaker 2 (02:03:02):
In my opinion, how can it not. Yeah, when we're
talking about pain, and we've talked so much about how
difficult pain is to understand, to explain to, and to
sympathize with, and to empathize with if your pain perception

(02:03:23):
is different than someone else's pain perception or pain sensitization, right.
I also do want to point out that the risk
of eventual ovarian cancer diagnosis, so cancer the malignant condition,
in people with long standing endometriosis, is two to threefold
higher than in people without endometriosis. So even though endometriosis

(02:03:49):
itself is not a cancerous condition, it's not without its risks. Yeah, right,
I mean, so far as that goes Ah, isn't that
just fascinating?

Speaker 1 (02:04:01):
Though?

Speaker 2 (02:04:01):
So I found that to be a very sort of
problematic what I think is likely a big contributor to
why endometriosis kind of has maybe the rap that it
has right, just this classification of it with and it's

(02:04:21):
medically I actually found one paper that was kind of like,
is it correct to call it a benign or is
it not in terms of the medical definition of the
term benign? Okay, because it does behave in ways that
benign tissue doesn't, and yet it doesn't behave the way
that a cancer does, and it doesn't fit the definition

(02:04:43):
of a cancer. There have been a number of new
mutations identified in endometrial tissue that are associated with cancer,
but never enough of them, like only one mutation instead
of three mutations that would then cause it to be
a cancer. So it is not a cancer and it

(02:05:05):
does not metastasize the way that a cancer does. But
it's not normal tissue either. So it's an interesting disease
in that respect, and we have a long way to
go to understanding it. I was thinking this and feeling this,
and then I went for a walk today and I

(02:05:25):
was listening to an episode of Vox's podcast Unexplainable, and
they have an episode on endometriosis. It's really great. It
has stories from like fourteen people who have been living
with endometriosis. I recommend the listen. But they also had
an interview with someone who researches endometriosis. It's doctor Lisa Griffiths.

(02:05:49):
She is at MIT and runs the Center for Gynopathology Research.
Her research is super fascinating. Its focuses on tissue engineering,
like growing endometrial ti issue on like chips, and they're
trying to develop better diagnostic markers that can be used
to not only diagnose, but then also classify endometriosis into

(02:06:11):
different subtypes, which could then theoretically lead to more personalized
or targeted treatment options, which is amazing. But she also
brought up this exact same thing that like the language
that we use surrounding endometriosis is so important, and she
was saying that, like her collaborators kept calling it a

(02:06:31):
benign condition, benign condition, and she was like, I live
with this, she has endometriosis. She's like, there's nothing benign
about it. Yeah, right, But it's that difference between quote
medical language and colloquial language, right, But it matters, right,
and it influences we are all humans, even in the
medical community. It influences the way that we perceive it

(02:06:54):
and then the way that we treat people who are
living with it. There are a lot of people doing
research on endometriosis from so many different angles because there's
so much that we don't know. So I already mentioned
some fascinating research by the Center for Gaynopathology Research. There's
also other groups like Citizen Endo, which is led by

(02:07:16):
doctor Noemi Elhadad at Columbia University and their team. Super
fascinating are using like citizen science y based tools to
try and better characterize the symptoms of endometriosis, to try
and bridge the gaps between what clinicians know or think
they know or think about endometriosis and how people who

(02:07:39):
are living with it actually experience endometriosis, which I love
so much.

Speaker 1 (02:07:44):
I know, I love I love that project so much.

Speaker 2 (02:07:46):
It's so cool, I think, honestly, in so many ways,
we're still at the phase. I think we've talked about
this in a number of different episodes arin but we're
at the phase in endometriosis right now where we still
are trying to just like garner awareness about this condition. Yeah,
you know, so I have a feeling after this episode

(02:08:09):
maybe a lot of our listeners are going to be
going to their doctor's offices, Like, so, can I ask
you about endometriosis?

Speaker 1 (02:08:16):
So I shouldn't be laying in bed all day and
not able to go to work because of my period.

Speaker 2 (02:08:22):
Yeah, I mean I didn't even get into like the
statistics on the number of missed school days, the number
of missed work days, like the economic EXPINI is in
the billions of dollars every year. Yeah, so that is
endometriosis there, It is sources, sources.

Speaker 1 (02:08:47):
I mentioned. I have some papers, but uh I mentioned
the four books that I read all great, love them,
And if you do want to know more about like
the medical history of endometriosis, who found it? Who made
this development? And that development sort of the argument over
who was the first one to describe it? There is
a very extensive I'm talking like fifth over fifty pages

(02:09:09):
paper by neshat at All from twenty twelve that goes
into all of that. Found that very interesting and in
terms of the evolutionary biology, those papers that I mentioned
are both by Dinsdale at All from twenty twenty one.

Speaker 2 (02:09:23):
I had a number of papers I already said the
title of one, the epidemiology of endometriosis is poorly understood
now is poorly known as the pathophysiology and diagnosis are unclear.
That was from Best Practice and Research Clinical of Stetrics
and Gynecology from twenty twenty one. There was a number
of other really interesting papers that dig deeper into what

(02:09:46):
we know about the mechanisms of endometriosis. I think my
favorite one was from Nature Reviews Endochronology in twenty nineteen,
as well as another one in the Annual Review of
Pathology mechan of Disease from twenty twenty. We'll post all
of these sources from this episode and every one of

(02:10:06):
our now eighty eight.

Speaker 1 (02:10:10):
Episodes eighty eight normal season episode right.

Speaker 2 (02:10:13):
Not including COVID on our website This podcast will kill
You dot Com.

Speaker 1 (02:10:18):
We will thank you again so much, Susie for sharing
your story with us. I love chatting with you, and yeah,
we just really appreciate it.

Speaker 2 (02:10:27):
Yeah, thank you. Thank you also to Blowdmobile for providing
the music for this episode and all of our one
hundred plus episodes.

Speaker 1 (02:10:37):
Thank you to Exactly Right Media. We are so proud
to be a part of this network.

Speaker 2 (02:10:42):
And thank you to you listeners. We make this podcast
for you, and thanks for sticking through this really long episode.
I hope you learned something new.

Speaker 1 (02:10:51):
I hope so too. Yeah, and a special thank you
also to our wonderful, incredible, beautiful patrons on patreonatre On.

Speaker 2 (02:11:00):
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Speaker 1 (02:11:03):
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From the Vault - Endometriosis: Menstrual Backwash (Ep 88)

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}From the Vault - Endometriosis: Menstrual Backwash (Ep 88)