Speaker 1: Hi, There, Erin and Aaron here. We recorded this episode
Speaker 1: on endometriosis back in January of twenty twenty two, and
Speaker 1: it was really the first time that we had covered
Speaker 1: a topic like this.
Speaker 2: Yeah, this episode has stayed with us and it's usually
Speaker 2: our first answer when someone asks us what our favorite
Speaker 2: episode is it is.
Speaker 1: We are especially grateful to Susie, who provided the first
Speaker 1: hand account which resonated with us and with so many
Speaker 1: of you.
Speaker 2: Earlier this year, Susie's husband reached out to us to
Speaker 2: let us know that Susie had passed away in September
Speaker 2: of twenty twenty four due to complications from cancer.
Speaker 1: We are heartbroken for her family and her loved ones,
Speaker 1: and we remain eternally grateful for her vulnerability and willingness
Speaker 1: to share her story.
Speaker 3: Hi. My name is Susie sol Aviv. From a pretty
Speaker 3: young age, I taught myself not to pay a lot
Speaker 3: of attention to my body. When I was younger, I
Speaker 3: didn't really have any issues, but after puberty, I started
Speaker 3: to have pretty bad cramps. I had to go to
Speaker 3: the bathroom fairly often, and I also found out that
Speaker 3: I was anemic, and I would occasionally if I was
Speaker 3: exercising too hard, start to black out. Nobody really had
Speaker 3: a good explanation for this, and nobody really directed me
Speaker 3: to a doctor or anything. So I just ignored it
Speaker 3: and moved forward. Lots of other people in my high
Speaker 3: school had period cramps, Plenty of people were going on
Speaker 3: birth control to try to control the cramps, and you know,
Speaker 3: it was easy enough for me to get past it
Speaker 3: was a little bit of ybuprofen. I was also raised
Speaker 3: very religious, and I'm still quite religious, and unfortunately, some
Speaker 3: American purity culture crept into my upbringing, and so I
Speaker 3: didn't spend a lot of time thinking about, for lack
Speaker 3: of a better word, my reproductive parts. Spent a lot
Speaker 3: of time ignoring them, spent a lot of time nothing
Speaker 3: was really going on, and generally being embarrassed about it.
Speaker 3: So I got good at disassociating from those parts of
Speaker 3: my body. After I got married, I ended up having
Speaker 3: extremely painful sex, and I assumed that it was related
Speaker 3: to purity culture, and I assumed it was psychological. I
Speaker 3: talked to my PCP about it. I think I got
Speaker 3: a referral to pelvic floor therapy at one point, but
Speaker 3: nobody was really concerned and again, I just decided that
Speaker 3: it wasn't a very big deal. It was just something
Speaker 3: that was in my head, and I was able to
Speaker 3: move past it. In our first year of marriage, I
Speaker 3: got pregnant unexpectedly and had no problems with the pregnancy
Speaker 3: except that it was I was very nauseous through the
Speaker 3: entire thing. I was in a lot of pain, and
Speaker 3: then when I had to have cervical checks, I was
Speaker 3: a tremendous amount of pain. Again, I told them that
Speaker 3: I thought this was due to growing up with a
Speaker 3: certain amount of purity culture and that it was psychological,
Speaker 3: and nobody questioned it. So after I had my daughter,
Speaker 3: eventually my period returned and I started having worse and
Speaker 3: worse cramps. But everybody tells you that after you have
Speaker 3: a baby, your periods get worse. That's just what people
Speaker 3: tell you, and so once again I chose to disassociate
Speaker 3: from it and ignore it. Some of the painful sex
Speaker 3: symptoms subsided, others remained. Mostly I was just proceeding with
Speaker 3: business as usual. Last year, I started having cramps so
Speaker 3: bad that I would have bladder spasms, which means that
Speaker 3: I would literally be my pants with no control. It
Speaker 3: only happened a few times, thank goodness, but I also
Speaker 3: ended up starting to have to lie down when I
Speaker 3: had my cramps, and I was surprised that it wasn't great,
Speaker 3: but I could generally manage it with like three to
Speaker 3: four ibuprofen and heat pack. But by the fall things
Speaker 3: had escalated and the ibuprofen wasn't cutting it and the
Speaker 3: heat pack wasn't cutting it, but the killer was when
Speaker 3: I noticed that there was blood in my stool. I
Speaker 3: didn't really want to do anything about it, but by January,
Speaker 3: my sister told me that I had to do something
Speaker 3: about it, so I went into urgent care. They took
Speaker 3: some samples and told me that I needed a colonoscopy
Speaker 3: and that I should not have any ibuprofen until after
Speaker 3: I had the colonoscopy. Then, on my thirty fifth birthday,
Speaker 3: I spent the entire day in agony and the worst
Speaker 3: pain I've ever had because I was experiencing my cramps
Speaker 3: without any sort of pain blocker. I went in for
Speaker 3: a colonoscopy at the beginning of March, and I didn't
Speaker 3: expect them to find much of anything, because again I
Speaker 3: didn't really believe that I had any problems and I
Speaker 3: thought to myself, the only problem that I could really
Speaker 3: have is cancer, because cancer runs rampant in my family.
Speaker 3: Both my father and my brother died of fairly rare cancers,
Speaker 3: my father viuvial melanoma and my brother of colangiocarsonoma. So
Speaker 3: I was a little anxious about the colonoscopy, but not overly.
Speaker 3: So when I woke up from the colonoscopy, the doctor
Speaker 3: went to get my husband and took me to his
Speaker 3: office and sat me down and told me that he
Speaker 3: had found something and it was very likely to be cancer.
Speaker 3: So this was incredibly traumatic for me because I was
Speaker 3: immediately convinced I was going to die. I also delivered
Speaker 3: the news to my family and told basically everyone I know,
Speaker 3: because I decided that if I did indeed have cancer,
Speaker 3: I wanted everybody to start praying as quickly as possible,
Speaker 3: and I maintained that it worked because a week later,
Speaker 3: the same doctor called me back and told me that
Speaker 3: the cell samples, to his great shock, had come back
Speaker 3: not as cancer but as endometriosis. I literally fell to
Speaker 3: my knees on the ground. I changed doctors, so I
Speaker 3: went in for a second opinion. I had another not
Speaker 3: another colonoscopy, but a flexible sigmoidoscopy, and the doctor told
Speaker 3: me he thought that I had endometriosis and maybe cancer,
Speaker 3: and I was referred to the gynecological oncology department. I
Speaker 3: went in and met with one of the directors of
Speaker 3: the guyinanc department, who told me that she thought, yes,
Speaker 3: there's a possibility of cancer, but mostly it was horrible endometriosis.
Speaker 3: So she showed me the images that they had taken
Speaker 3: of my body in the MRI and everything, and you
Speaker 3: could see that there was something growing out of my
Speaker 3: left ovary into my colon, and we knew that it
Speaker 3: was probably in other places, but there is no way
Speaker 3: to confirm endometriosis except by surgery, so they could not confirm,
Speaker 3: and they thought there was a possibility that there was
Speaker 3: still cancer. So the other thing that the guynanc told
Speaker 3: me was that she thought I was going to have
Speaker 3: to have a complete hysterectopy and eupherectomy. I had been
Speaker 3: trying for a second child point for almost a year
Speaker 3: and this was devastating, but because there was a chance
Speaker 3: of cancer, I was like, just take it all. I
Speaker 3: don't want it, get rid of it. So I had
Speaker 3: a period farewell party with my friends over Zoom. We
Speaker 3: drank cranberry juice, we toasted. I wrote a letter to
Speaker 3: aunt Flow, sending her out into the worlds, and my
Speaker 3: surgery was scheduled for May fourth. My last period was
Speaker 3: one of the worst pains I've ever had in my life.
Speaker 3: The ibuprofen didn't ease it, the heat didn't ease it.
Speaker 3: I was just lying in bed for two days and
Speaker 3: was more or less silent screaming.
Speaker 2: It was horrific.
Speaker 3: I had surgery. They confirmed stage four endometriosis. I discussed
Speaker 3: with my surgeon that I wanted to try to keep
Speaker 3: my rite ovary if possible, because I didn't want to
Speaker 3: go into surgical menopause at thirty five. There are a
Speaker 3: lot of issues associated with going into menopause early, and
Speaker 3: I wanted to avoid them if I could. Also, I
Speaker 3: have I struggle with my mental health. I have depression anxiety,
Speaker 3: and I knew that the severe hormonal shift would be
Speaker 3: very difficult. Although there was less than a five percent
Speaker 3: chance that they could save my ovary, the surgeon was
Speaker 3: able to do it. There is still an insignificant amount
Speaker 3: of endometriosis on my right ovary. It's less than one centimeter,
Speaker 3: but they were able to remove fourteen point five centimeters
Speaker 3: of colon, which is about the size of sharp b
Speaker 3: a six centimeter rectovaginal septum tumor, which which is about
Speaker 3: the size of an egg, and a seven centimeter left
Speaker 3: ovarian tumor, which is about the size of peach. And
Speaker 3: the left ovary. I woke up to the very happy
Speaker 3: news that I still had an ovary, which I did
Speaker 3: not expect, and about a week later I got the
Speaker 3: even happier news that there wasn't cancer, it was just endometriosis.
Speaker 3: So after the surgery, it took me about three months
Speaker 3: to feel normal again. The biggest shift since the surgery
Speaker 3: is that I've had to relearn my body. I have
Speaker 3: to relearn what feels good and bad, what's painful and
Speaker 3: what's not, because I just disassociated from it so much
Speaker 3: that I had no idea that I was in pain.
Speaker 3: The emotionally challenging part of this, aside from thinking that
Speaker 3: I was going to die of cancer for a fairly
Speaker 3: significant amount of time, was that there's almost no chance
Speaker 3: of me ever having another biological child, and so I've
Speaker 3: had to give up on that particular dream because the
Speaker 3: hope was just too much. But we got a puppy,
Speaker 3: and so that's my replacement baby. I have also learned
Speaker 3: to be a lot kinder to myself and to trust
Speaker 3: my body more. I accept now that I am living
Speaker 3: with a chronic illness. I try to take naps a lot,
Speaker 3: I try to listen to what feels good and what
Speaker 3: feels bad. But when I stopped to really think about it,
Speaker 3: the thing that really makes me angry is that I
Speaker 3: had no idea I had endometriosis before any of this started.
Speaker 3: It is absurd that no one thought of endometriosis, That
Speaker 3: I was never presented with any education about endometriosis, that
Speaker 3: no one in my friend's circle ever talked about endometriosis,
Speaker 3: even though I found out more and more people have it,
Speaker 3: and I just feel like I know so little. In
Speaker 3: a post I wrote on Reddit, I wrote, I've been
Speaker 3: a feminist for my entire life without understanding that I've
Speaker 3: been trapped in a patriarchal pain trap. So thank you
Speaker 3: for listening to my story.
Speaker 1: Thank you so much Susie for taking the time and
Speaker 1: being willing to share your story. It was Oh my gosh,
Speaker 1: I mean.
Speaker 2: Yeah, I can't wow, thank you.
Speaker 1: Yeah.
Speaker 2: Hi, I'm Erin Welsh and I'm Erin allman updyke.
Speaker 1: And this is this podcast will kill you.
Speaker 2: It's uh, it's gonna be a big episode. Erin.
Speaker 1: This is certainly my longest notes like by I think
Speaker 1: like kind of a bit so just yeah, I really
Speaker 1: kind of it got away from me. But I'm excited
Speaker 1: about it.
Speaker 2: I am too. I have like a lot of feelings
Speaker 2: about it. So it's going to be a good one.
Speaker 1: Yeah, And what exactly is going to be a good one?
Speaker 3: Oh?
Speaker 2: Yeah, that's right. Today we're covering endometriosis.
Speaker 1: That's right. What even is endometriosis? At the end of
Speaker 1: this episode, will we have a satisfactory answer to that question?
Speaker 2: I think we'll have, like at least most of a
Speaker 2: satisfactory answer, will have a clinical definition.
Speaker 1: That's true, that's true. Where does that leave us? I
Speaker 1: guess we'll find out before we get into the nitty
Speaker 1: gritty of all of that. Though. Should we do quarantining?
Speaker 2: We really should?
Speaker 1: What are we drinking this week?
Speaker 2: We're drinking the chocolate cyst of course. Oh boy, honestly,
Speaker 2: that's I think that's a grosser name than our diabetes
Speaker 2: one sweet Pea. Yeah, I think this is grosser.
Speaker 1: Is it grosser than our MRSA one?
Speaker 2: Mm? No, mah, maybe, I don't know. You tell us listeners,
Speaker 2: You tell us listeners.
Speaker 1: Yeah, what's the grossest one yet? So why are we
Speaker 1: calling it the chocolate cist though? Yeah?
Speaker 2: Okay, so a chocolate cyst is like one of the
Speaker 2: descriptors for an endometrioma, which is when you get endometriosis
Speaker 2: on your ovary. We're gonna get into all of it,
Speaker 2: but basically, sometimes you get these things that look like
Speaker 2: a little chocolate truffle.
Speaker 1: Liquid or Okay, well, definitely garnish this with a chocolate
Speaker 1: truffle if you can.
Speaker 2: So what's in the chocolate cyst?
Speaker 1: Chocolate liqueur, banana liqueur, coffee liqueur, and cream and then
Speaker 1: of course s garnish like I said, with a chocolate truffle.
Speaker 1: And also the placy Burita is just probably going to
Speaker 1: be the most decadent, delicious chocolate milkshake you've ever had,
Speaker 1: chocolate banana milkshake. Yeah. And you can find our recipe
Speaker 1: for our quarantini as well as our non alcoholic Placyburta
Speaker 1: on our website. This podcast willkill You dot Com and
Speaker 1: we'll also post it to all of our social media channels.
Speaker 2: On our website, this podcast will kill You dot com.
Speaker 2: You will find everything that you could want to find.
Speaker 2: We have merch we have links to Bloodmobile, who provides
Speaker 2: the music for this podcast. We have transcripts of all
Speaker 2: of our episodes now, which is thrilling. We've got a
Speaker 2: bookshop dot org affiliate account. We've got a good Reads list,
Speaker 2: we have a link to our patreon. We have it's
Speaker 2: all there.
Speaker 1: It's all there, it's all there, and more.
Speaker 2: With that, Aaron, should we just get into the endomeet
Speaker 2: trium of this episode?
Speaker 1: Erin, yes, yes, please please. Let's take a quick break first.
Speaker 2: I can kind of sum up this whole episode with
Speaker 2: one of the more recent papers that I found. It's
Speaker 2: the title of a paper from twenty twenty one, and
Speaker 2: the title is simply, the epidemiology of endometriosis is poorly
Speaker 2: known as the pathophysiology and diagnosis are unclear.
Speaker 1: And how that's the title.
Speaker 2: I know that's the title. Man, Yeah, it's uh yeah,
Speaker 2: We're off to a really good start.
Speaker 1: Strong yep spoilers. I feel like, yes, we're in that title.
Speaker 2: Okay, So endometriosis. I know there's probably a good subset
Speaker 2: of our listenership who has never heard of this. And
Speaker 2: I am going to get to the official definition really soon,
Speaker 2: I promise, but some little lead in. Okay, Endometriosis is
Speaker 2: almost always described as a disease of women of child
Speaker 2: bearing age. That is how it is described. It's a
Speaker 2: problem straight off the bat because this description ignores number one,
Speaker 2: anyone who is trans or non binary that has a
Speaker 2: uterus or has endometriosis. Number two, it ignores the fact
Speaker 2: that endometriosis pain and endometriosis itself can persist or even
Speaker 2: sometimes arise after menopause aka after quote child bearing. Number three,
Speaker 2: It also ignores the fact that cases of endometriosis, though
Speaker 2: very rare, have occurred in people assigned male at birth,
Speaker 2: which means that a uterus isn't necessarily a prerequisite for
Speaker 2: the disease. And finally, and I think most importantly, I
Speaker 2: don't know they're all important, but by designating this disease
Speaker 2: to this particular group quote women of child bearing age
Speaker 2: and Aaron, I know you're going to talk a lot
Speaker 2: more about this.
Speaker 1: Oh yeah, yeah, so I thought, is it's also been
Speaker 1: found in infants.
Speaker 2: Oh that's a good point. Yeah, yeah, it can definitely
Speaker 2: be in before child bearing age as well.
Speaker 1: Everyone can get very trios.
Speaker 2: But by designating it as the disease of women of
Speaker 2: childbearing age, it makes it really really easy in our
Speaker 2: society to dismiss it as a condition for oh, young
Speaker 2: women just have poor pain tolerance, or oh this is
Speaker 2: a women's problem, or even worse, as a normal part
Speaker 2: of young womanhood. Spoiler alert, it is none of those things.
Speaker 1: I'm going to be talking so much about this aspect
Speaker 1: of it.
Speaker 2: I can't wait. I'm gonna I'm going to try and
Speaker 2: just hit us all with the little that we do
Speaker 2: know about the biology. So let's actually define the topic
Speaker 2: of today's episode, shall we?
Speaker 1: Mm hmm?
Speaker 2: Okay, So the technical definition of endometriosis is simply the
Speaker 2: finding of endometrial glands and stroma, which just means endometrial
Speaker 2: like tissue outside of the uterus. So what does that mean? Yeah,
Speaker 2: to talk about that, I want to first talk about
Speaker 2: my personal favorite organ, the uterus. That's my favorite one.
Speaker 2: Do you have a favorite organ?
Speaker 1: I've never thought about it.
Speaker 2: It's a uterus.
Speaker 1: No, I don't. I don't think I would need I
Speaker 1: would need more time.
Speaker 2: Okay, that's fine. Okay. So we talked I think a
Speaker 2: fair bit about the uterus in our birth control episode
Speaker 2: because we talked about the whole menstrual cycle. So I'm
Speaker 2: just gonna briefly recap. The uterus is an organ that's
Speaker 2: made up of a muscular wall, the myometrium, and an
Speaker 2: inner layer, the endometrium, that's composed of glandular cells. So
Speaker 2: there are these cells that basically form into little glands
Speaker 2: as well as stroma or like support cells is how
Speaker 2: you can think of them. That surround these glandular cells
Speaker 2: and this endometrium. This inner lining of the uterus is
Speaker 2: constantly in flux. This lining is what responds to and
Speaker 2: changes with the influence of cyclic variation in our hormone levels,
Speaker 2: most specifically estrogen and progesterone. This is the menstrual cycle
Speaker 2: that we went over in our birth control episode, which
Speaker 2: was now a couple of years ago. To recap it,
Speaker 2: Under the influence of an increase in estrogen, oocytes in
Speaker 2: the ovaries begin to mature, and the uterus lining the
Speaker 2: endometrium proliferates, it grows in number. These stromo cells and
Speaker 2: these glandular cells, and this is known as the follicular
Speaker 2: phase or the proliferative phase, where this lining is growing
Speaker 2: and the endometril lining is becoming thicker in preparation for
Speaker 2: the potential implantation of a blastocyst. Then that peak of
Speaker 2: estrogen prompts a surge of another hormone that causes the
Speaker 2: release of an egg aka ovulation. And then as that
Speaker 2: surge of estrogen declines, progesterone, another hormone, begins to increase,
Speaker 2: and the uterus, the endometrium enters what's known as the
Speaker 2: secretary phase, where these glands thicken and the arteries within
Speaker 2: their widen and proliferate in number, and the endometrium undergoes
Speaker 2: this process, further preparing it for receiving a blasticist. And
Speaker 2: then without anything that implants, fourteen days go by and
Speaker 2: progesterone levels sharply decline, and this withdrawal leads to the
Speaker 2: separation of all these cells from their basal layer and
Speaker 2: they slough off aka menstruation. All of that endometrial tissue
Speaker 2: then exits through the cervix, which is the opening of
Speaker 2: the uterus through the vagina, and that is menstruation, right, yep, right, Okay,
Speaker 2: So if that all is the menstrual cycle, and that's
Speaker 2: what's happening inside of a uterus during that menstrual cycle,
Speaker 2: then what is endometriosis If it's the finding of these
Speaker 2: same type of cells that are found inside of a uterus,
Speaker 2: these endometrial, glandular and stromal cells, but now they are
Speaker 2: implanted in tissue outside of the uterus. So instead of
Speaker 2: being inside the lining of this muscular organ, it's outside
Speaker 2: on the wall of the organ, or on the wall
Speaker 2: of your belly, which is called the peritoneum, the inside
Speaker 2: wall of your abdomen. It could even be on your
Speaker 2: bladder or in your Philippian tubes, or on your ovary,
Speaker 2: or on your rectum. It could be anywhere literally in
Speaker 2: your body.
Speaker 1: Yeah.
Speaker 2: So then the question is how does this become a
Speaker 2: disease or a problem, Like why is it a problem
Speaker 2: to have this tissue outside of the uterus. Well, this
Speaker 2: tissue is still active. It's hormonally sensitive endometrial cells that
Speaker 2: are undergoing the same proliferative and secretory and then degeneration
Speaker 2: that happens within the uterus and would end in mensies
Speaker 2: leaving the body through the vagina, but it's happening in
Speaker 2: an abnormal location and therefore leading to not only abnormal
Speaker 2: responses in our body and massive amounts of inflammation, but
Speaker 2: it's also then not able to leave the body, so
Speaker 2: this inflammation stays contained within the body. That leads to
Speaker 2: tissue damage, which can then lead to scarring and fibrosis,
Speaker 2: which leads to the symptoms of endometriosis, which are chiefly pain,
Speaker 2: which doesn't begin to describe adequately like the true symptoms,
Speaker 2: and also infertility or difficulty conceiving or sustaining a pregnancy.
Speaker 2: So that was a lot, like all in a very
Speaker 2: short amount of time. And that's all we know about
Speaker 2: enemy dresses. Just kidding, We know like a tiny bit
Speaker 2: more than that. Yeah, So that explanation left a lot
Speaker 2: of open ended questions, and I think the first one
Speaker 2: that I would like to be able to answer is
Speaker 2: how how does this endometrial tissue end up in a
Speaker 2: place where endometrium shouldn't be. Tissue types in our body,
Speaker 2: like different cell types are actually pretty tightly regulated, So
Speaker 2: like the tissue that makes up our lining of our
Speaker 2: abdomen is different than the tissue that makes up the
Speaker 2: lining of your uterus, which is different than the tissue
Speaker 2: that makes up your heart or your blood, ves, souls,
Speaker 2: et cetera.
Speaker 1: Right, Right, And so then because it's so tightly regulated,
Speaker 1: shouldn't your body recognize that, like, hey, this isn't necessarily
Speaker 1: in the right spot it.
Speaker 2: Yeah, And in the case of anenometrius, that's part of
Speaker 2: the problem is that your body does recognize it as
Speaker 2: something that's not in the right spot and therefore causes
Speaker 2: a lot of inflammation within it, right, Yeah, And so
Speaker 2: then that leads to part of the problem, or at
Speaker 2: least we think that maybe that's how it's happening. And
Speaker 2: with a lot to do with endometriosis, it's hard to
Speaker 2: know who's the instigator, like which is the cause and
Speaker 2: which is the effect? Right, right, But yes, that can
Speaker 2: be part of the problem because our body does recognize
Speaker 2: when a tissue is not in the right place a
Speaker 2: lot of times. But again, this doesn't happen very often
Speaker 2: to have a tissue type in a location in the
Speaker 2: body where it doesn't belong. Because in general, as we
Speaker 2: develop from a single cell all the way into our
Speaker 2: multicellular human cells, our cells undergo this process of differentiation
Speaker 2: into all of our specific tissue types in a very
Speaker 2: characteristic pattern during the process of embryogenesis and development. So
Speaker 2: all of our cells have very explicit sets of instructions
Speaker 2: that they follow and explicit influences that they're under in
Speaker 2: order to develop into these different tissue types in certain
Speaker 2: areas and not in others, Which is why we don't
Speaker 2: see heart tissue in our bones or brain tissue in
Speaker 2: our guts for the most part. So why on earth
Speaker 2: do we sometimes get endometrial tissue outside of the inside
Speaker 2: of the uterus? And the short answer is, we don't know,
Speaker 2: we don't know, we do not know. Let me go
Speaker 2: through the quote prevailing theories and then maybe Erin you
Speaker 2: and I can have some opinions. So the kind of
Speaker 2: what's obnoxiously still called the prevailing theory on how this happens,
Speaker 2: on how endometral glands end up implanting and then replicating
Speaker 2: and proliferating outside our uterus is something called retrograde menstruation
Speaker 2: or what.
Speaker 1: Do you call it, Erin as I've been calling it
Speaker 1: menstrual backwashril backwash. Could not for the life of me
Speaker 1: remember retrograde menstruation.
Speaker 2: It's a good visual menstrual backwash.
Speaker 1: Yeah, essentially.
Speaker 2: So if you've not recently looked at a picture of
Speaker 2: a uterus, let me paint you one. So the uterus
Speaker 2: is connected to Philippian tubes at the top. They look
Speaker 2: kind of like ears that come off, or maybe little arms,
Speaker 2: and these Filippian tubes are open at the end. They
Speaker 2: have these little thimbrae little fingers at the end, and
Speaker 2: just outside of these Philippian tubes is where our ovaries sit.
Speaker 2: So during menstruation, all of the endometril lining and tissue
Speaker 2: comes out through the cervix, which is the base of
Speaker 2: the uterus, and also the top of the vaginal canal,
Speaker 2: that is the normal flow of menstrual products. But the
Speaker 2: top of the uterus, those Filippian tubes are open at
Speaker 2: the ends. So in fact, there is in many people
Speaker 2: who menstrate, menstrual product aka endometrial tissue that goes backwards
Speaker 2: and it goes out through those Philippian tubes and enters
Speaker 2: our peritoneal cavity. That's it backwash, backwash. And it was
Speaker 2: thought that this certainly must be the way that endometriosis happens.
Speaker 2: These endometrial tissues are entering our peritoneal cavity. Boom, there
Speaker 2: you go.
Speaker 1: I think there's a really interesting parallel between this, like
Speaker 1: wandering endometrial tissue concept and the wandering uterus, the wandering
Speaker 1: usteria concept.
Speaker 2: It's yeah, it's the same. It totally is.
Speaker 1: It's very interesting to me.
Speaker 2: And you know, there is some evidence in support of this,
Speaker 2: because a sizeable portion of endometrial implants occur in areas
Speaker 2: where this menstrual backwash, this retrograde menstruation would end up.
Speaker 2: And in a lot of people where they have looked
Speaker 2: at does this person with endometriosis have retrograde menstruation, they
Speaker 2: have found yes they do, and so there's a correlation there.
Speaker 2: But as it turns out, this is very common and
Speaker 2: happens in at least, if not more than, about forty
Speaker 2: percent of people with the uterus who men straight pretty
Speaker 2: much every time they menstraight to varying degrees. Right, So
Speaker 2: it doesn't explain why some people then go on to
Speaker 2: develop endometriosis and others don't. It also doesn't explain how
Speaker 2: endometriosis can happen in people without a uterus to begin with,
Speaker 2: which again is incredibly rare, but has happened and it
Speaker 2: doesn't explain how endometrial cells can end up outside of
Speaker 2: the abdominal cavity entirely, which it can, right, You can
Speaker 2: get endometriosis in the diaphragm, in the thorax.
Speaker 1: In the lungs. Uh huh.
Speaker 2: So this menstrual backwash theory doesn't quite some work. It
Speaker 2: need some work, or it.
Speaker 1: Just needs to be discarded for a new one or
Speaker 1: integrated with another passis.
Speaker 2: Yeah, and we'll we'll get there actually, because there's an
Speaker 2: interesting integrative one. So then there is a theory of
Speaker 2: stem cells, of which there are kind of two different
Speaker 2: schools of thought. So stem cells, I think that I
Speaker 2: might have touched on this in the HPV episode. I'm
Speaker 2: not positive we've talked about them before, but anyways, I
Speaker 2: don't know. A stem cell is a cell that has
Speaker 2: the ability to differentiate into other cell types. So, like
Speaker 2: I was saying, how when we develop from a single
Speaker 2: cell into a multicellular human, our cells are differentiating. They're
Speaker 2: becoming like grown up quote unquote, grown up cells that
Speaker 2: have a specific job and function well. Stem cells are
Speaker 2: kind of like baby cells that have the ability to
Speaker 2: grow up and become any other type of cell or
Speaker 2: many other types of cells. So there's a theory that
Speaker 2: perhaps bone marrow stem cells, which have the ability to
Speaker 2: differentiate into a number of cell types, might somehow find
Speaker 2: their way into the peritoneum or the abdominal cavity, and
Speaker 2: then there they would embed and under certain hormonal influences,
Speaker 2: would differentiate into endometrial cells for some reason.
Speaker 1: Huh.
Speaker 2: Yeah, that's one theory. It's not a great one.
Speaker 1: Yeah, I'm like, how does that explain timing of things?
Speaker 2: Or honestly or in it doesn't. Okay, it's not my
Speaker 2: favorite of the theories. So another one that's I think
Speaker 2: at least a little bit more easy to understand is
Speaker 2: a theory that it's endometrial stem cells. Okay, this is
Speaker 2: coming a little bit closer. So, and this theory can
Speaker 2: actually kind of tie into the menstrual backwash theory but
Speaker 2: adds on to it a little bit. So in this case,
Speaker 2: it's not the menstrual backwash per se.
Speaker 1: I love that we're calling it menstrual backwash. Now we've just.
Speaker 2: We're all in. Okay, So it's not the retrograde menstruation
Speaker 2: of just any old endometrial cells, but of specifically endometrial
Speaker 2: stem cells like the basal cell layers that have the
Speaker 2: ability to differentiate into the different endometrial cell types. If
Speaker 2: those maybe are either backwashed or find their way into
Speaker 2: our bloodstream or our lymphatics, then perhaps those can embed
Speaker 2: and they already have the ability they're programmed to differentiate
Speaker 2: into endometrial cells. So it's logical then that they would
Speaker 2: be responsive to the same hormonal influences that they would
Speaker 2: if they were still in the inside of the uterus.
Speaker 2: Does that make sense?
Speaker 1: Yeah, that's interesting. And so are there any studies, animal
Speaker 1: studies or something things showing support for this or even
Speaker 1: just like tissue culture studies showing support for this.
Speaker 2: There are certainly studies that show that these stem cell
Speaker 2: types exist and can embed and then become you know,
Speaker 2: endometra like tissue.
Speaker 1: Okay, And how then would those stem cells so these
Speaker 1: are like these would be like the deepest basis layer.
Speaker 2: Yes, that's my understanding.
Speaker 1: Okay, So then how do they escape? Yea, the uterus.
Speaker 2: That's the question that we don't have an answer to.
Speaker 1: Interesting.
Speaker 2: There's another theory, and this is the sillomic metaplasia theory,
Speaker 2: which is your celum is the inside of your abdomen,
Speaker 2: so in this theory, regular old abdominal cells wherever in
Speaker 2: your abdomen just undergo metaplasia. Metaplasia means they develop mutations
Speaker 2: and then they change. And so instead of being a
Speaker 2: differentiated let's say, abdominal wall cell, they dedifferentiate and then
Speaker 2: redifferentiate into endometrial cells.
Speaker 1: Huh huh.
Speaker 2: So in this theory, instead of like a baby undifferentiated
Speaker 2: stem cell that has the potential to become any cell type,
Speaker 2: you're taking a fully formed adult cell and changing it
Speaker 2: into an endometrial cell.
Speaker 1: Yeah, yeah, that seems okay, that seems a little complicated.
Speaker 1: So currently today in we're recording this in twenty twenty one,
Speaker 1: I know that like the prevailing hypothesis is still this
Speaker 1: Spenstreul backwash thing. But is that, like, what is the
Speaker 1: timeline for these other hypotheses, and is there are there
Speaker 1: any of them that are seeking to dethrone so that one.
Speaker 2: The thing is not really okay, because the thing is
Speaker 2: And here's the problem is that none of these theories
Speaker 2: in and of themselves fully or adequately address the question
Speaker 2: of how exactly endometriosis occurs, right, And they also don't
Speaker 2: answer the question of why do some people get endometriosis
Speaker 2: and other people don't. What are the risk factors? And
Speaker 2: so I think where there is more research being done
Speaker 2: is trying to understand the second part of that question,
Speaker 2: why do some people get endometriosis and others don't. Maybe
Speaker 2: it is one of these theories that we already have,
Speaker 2: Maybe it really is menstrual backwash, but it still doesn't
Speaker 2: answer the question of why forty percent of people have
Speaker 2: menstrual backwash and not forty percent of people have endometriosis? Right, right,
Speaker 2: And part of the answer to that question at least
Speaker 2: seems to be genetic. So in a number of genome
Speaker 2: wide associations studies, which is when you look at someone's
Speaker 2: entire genome and you try and figure out what's going on,
Speaker 2: there have been I think at least like ten or
Speaker 2: fifteen different gene low size so different locations that have
Speaker 2: been shown to be associated with endometriosis. So we know
Speaker 2: that there's a strong genetic component, but knowing that there's
Speaker 2: at least ten or fifteen different genes is also maybe
Speaker 2: not all that helpful because it's hard to know what
Speaker 2: that means. Right. It does seem like all of these
Speaker 2: gene regions are in some way related to hormonal regulation
Speaker 2: in some respect, so a lot of this is a
Speaker 2: hormonally driven disease and really an estrogen dependent disease in
Speaker 2: a lot of ways. But really one of the prevailing
Speaker 2: thoughts is that it is this kind of genetic and
Speaker 2: epigenetic factors combined with these unknown environmental insults that leads
Speaker 2: to endometriosis, and endometriosis is associated with a number of
Speaker 2: other autoimmune disorders, and that's kind of the thinking with
Speaker 2: autoimmune disorders as well. Right, It's these genetic predispositions and
Speaker 2: some kind of environmental influences that combine together to then
Speaker 2: lead to this disease.
Speaker 4: It's not satisfying, but it does make sense in that
Speaker 4: if there's a high level of inflammatory response to this
Speaker 4: self tissue, even like in places it shouldn't be compared.
Speaker 1: To people who may not have as high as a
Speaker 1: strong you know, inflammatory response and so might not have
Speaker 1: a strong symptoms or might not have the development of
Speaker 1: endometrio lesions or whatever exactly, then that sort of that
Speaker 1: kind of goes along with it.
Speaker 2: Yeah, especially because while this is if you look at
Speaker 2: endometriosis tissue histologically like under a microscope. It looks just
Speaker 2: like endometrial tissue. It's histologically it is endometrial tissue, and
Speaker 2: in some ways it does behave in the same way
Speaker 2: as endometrial tissue inside your uterus, right, it proliferates with estrogen,
Speaker 2: it degrades, et cetera. But what's different is that outside
Speaker 2: of the uterus, this endometrial tissue is associated with hugely
Speaker 2: increased amounts of inflammation, and this we do know. So
Speaker 2: we know that local inflammation and immune dysregulation is a
Speaker 2: really big part of the pathogenicity of endometriosis, and this
Speaker 2: inflammation itself is what then leads to the fibrosis, which
Speaker 2: leads to these adhesions, which can lead to such significant
Speaker 2: pain and symptoms. So one way to think of it
Speaker 2: is that it's all related to the bleeding, because endometril
Speaker 2: proliferation and then degeneration leads to so much bleeding. The
Speaker 2: leading itself, like blood itself, is a very very inflammatory,
Speaker 2: So the fact that it's trapped somewhere inside your body
Speaker 2: rather than traveling through the vaginal canal, leads to a
Speaker 2: lot of inflammation, which leads to immune cell infiltration, which
Speaker 2: et cetera. Et cetera, all the way down the line.
Speaker 2: But it's also not clear that that's the order in
Speaker 2: which things go. It could be that do you have
Speaker 2: underlying inflammatory changes, differences in the way that your inflammatory
Speaker 2: markers react that then leads to the increased inflammation. Does
Speaker 2: that make sense?
Speaker 1: Yeah, so it's like a chicken in the egg, but
Speaker 1: it's like the chocolate system and the inflammation.
Speaker 2: That's exactly right, Aaron. Yeah, so that is what we
Speaker 2: know about the kind of pathogenicity of vendometriosis.
Speaker 1: I'm still confused, like it's so so yeah, same okay,
Speaker 1: question okay, or rather question what do these lesions look like?
Speaker 1: How big do they get, what are the variations in
Speaker 1: How do you know when you have one, et cetera,
Speaker 1: et cetera.
Speaker 2: Yeah. So, typically endometriosis is classified into kind of three
Speaker 2: main subtypes. So there's superficial peritoneal legions, which means these
Speaker 2: little endometrial implants that are primarily within the abdominal cavity,
Speaker 2: either on like the sirosa, which is the outside lining
Speaker 2: of other organs, or on the walls of your abdominal cavity,
Speaker 2: maybe tucked behind your uterus or up on the front
Speaker 2: anywhere really, but they don't extend deeply into the tissues,
Speaker 2: these superficial lesions, and they're generally small. I don't have
Speaker 2: an exact size for you, but they don't extend very deeply.
Speaker 2: That's the first type. Then there are ovarian endometriomas, which
Speaker 2: is where we got the name for our drink. This
Speaker 2: basically just means that the endometriosis has implanted on or
Speaker 2: within the ovary. It's actually thought that it might be
Speaker 2: like where the eggs pop out. If endometrial implants find
Speaker 2: their way in there, they then become enclosed and then
Speaker 2: they form. They can form these really rather large cysts,
Speaker 2: and because they are enclosed within kind of ovarian tissue
Speaker 2: and scar tissue around them, they undergo the same cycles
Speaker 2: of proliferation and degeneration, and within time that blood is
Speaker 2: like contained inside this cyst, and over time that becomes
Speaker 2: a very dark like chocolate color, which is how they
Speaker 2: got the name chocolate cysts.
Speaker 1: It also sounds horribly painful.
Speaker 2: Yes, and they can get very quite large. And then
Speaker 2: the word subtype is deeply infiltrating endometriosis literally acronymed as dye.
Speaker 2: Mm hmmm, Like who came up with that.
Speaker 1: Mm hmm, Yeah, it's not great, yep.
Speaker 2: And this deeply infiltrating form, by definition, invades into deeper structures,
Speaker 2: which means instead of just being on the surface of
Speaker 2: say your abdominal wall or on the surface of your bladder,
Speaker 2: it's invading deeper into the muscles of your bladder, into
Speaker 2: the walls of your rectum, through your urethra or your
Speaker 2: urytor for example. God, yeah, it can be horrific, and
Speaker 2: so especially deeply infiltrating endometriosis can cause not only incredible pain,
Speaker 2: but also can then cause damage to and blockage of
Speaker 2: really important structures like your colon or your bladder or
Speaker 2: your urytor.
Speaker 1: So what is the association with these different stages and
Speaker 1: pain intensity or is there any association or with infertility
Speaker 1: or subfertility.
Speaker 2: Yeah, it's a really good question. There's not a solid
Speaker 2: answer to that. In general, deeply infiltrating lesions are kind
Speaker 2: of the worst as well as endometriomas, especially the ovarian
Speaker 2: endometriomas are also associated with infertility. But the problem is
Speaker 2: that just by looking at somebody's endometriosis, like during a surgery,
Speaker 2: for example, you can't tell how bad their symptoms are
Speaker 2: going to be so what it looks like doesn't correspond
Speaker 2: very well with actual symptoms severity, which can be problematic,
Speaker 2: very problematic. But of course the deeply infiltrating endometriosis has
Speaker 2: the most potent to cause problems in other organs, for example.
Speaker 2: But in terms of pain, which is kind of the
Speaker 2: biggest symptom of endometriosis, any of the types can cause pain,
Speaker 2: or any of the types might not be associated with pain,
Speaker 2: So in that respect, it's difficult. In terms of pain, Uh, Aaron, Yeah,
Speaker 2: So pain is classically like the hallmark symptom I guess
Speaker 2: of endometriosis, and most classically it's dysmenorrhea, which is painful periods,
Speaker 2: which sounds like, uh, that doesn't everyone have painful periods?
Speaker 1: This is not.
Speaker 2: So period pain. Typical period pain should not be so
Speaker 2: bad that you are missing school, that you are miss work,
Speaker 2: that you are laid out in your bed for an
Speaker 2: entire week because you can't function as a human being.
Speaker 2: And that's the kind of pain that is often associated
Speaker 2: with endometriosis. You're not able to function because of how
Speaker 2: much pain is associated with it. But it's not just
Speaker 2: with menstruation. Especially as these endometrial implants sort of just
Speaker 2: persist over time. It can also be dysperunea, which is
Speaker 2: pain with penetrative sex, which can be hugely impactful on
Speaker 2: somebody's life, pain with defecation, dyskesia, painful urination, just pain,
Speaker 2: pain with everything, pain all the time, chronically. So but
Speaker 2: here's the thing about pain. I'm probably not going to
Speaker 2: do this justice, but I want to just briefly talk
Speaker 2: about the neurobiology of pain. If we have time.
Speaker 1: This is gonna be a long episode, but you know,
Speaker 1: take a break if you need to come back to it.
Speaker 2: Have a chocolate sistah.
Speaker 1: Yeah.
Speaker 2: So, pain at its core, Like the definition of pain,
Speaker 2: I guess is when specific receptors, no susceptors are activated
Speaker 2: and send signals to our brain, which are then interpreted
Speaker 2: by the brain, processed in certain areas of the brain,
Speaker 2: and then transmitted and we then experience pain. Like that's
Speaker 2: a really general description of it. But there's a few
Speaker 2: things about endometriosis pain and about chronic pain in general
Speaker 2: that I think are really important to kind of understand. First,
Speaker 2: studies have found that endometriotic implants, this endometriosis in your
Speaker 2: abdomen often has higher densities of nerve fibers, so they're
Speaker 2: more densely enervated than the surrounding tissue. They're also more
Speaker 2: highly sensitized, so they actually respond at a lower threshold
Speaker 2: of stimuli, which leads to both of those things combined
Speaker 2: lead to an increase in pain signal transmission to the brain.
Speaker 1: Yeah, it's just like efficiency in signals traveling. They're wait, oh,
Speaker 1: I've gone down this route before. Oh I know how
Speaker 1: to get there. Oh, exactly way.
Speaker 2: Really, but also there are literally brain architecture changes that
Speaker 2: happen with chronic pain, right, And this is something that
Speaker 2: we do not fully understand, and people are finally just
Speaker 2: now doing a lot of research.
Speaker 1: On finally just now acknowledging that it might be.
Speaker 2: Real, right, that it's not just psychosomatic, which is what
Speaker 2: it was thought to be for the longest time. But
Speaker 2: there are now a lot of really good studies on
Speaker 2: this that the brain changes in relation to experience chronic pain.
Speaker 2: And while there aren't as many studies on this in
Speaker 2: relation to endometriosis related pain specifically or to pelvic pain specifically,
Speaker 2: there are a few, and the ones that do exist
Speaker 2: that have looked at people, for example, with dysmineria or
Speaker 2: very painful periods. People who have chronic pelvic pain have
Speaker 2: a lower peripheral input at which they experience pain and
Speaker 2: a higher activity, higher activation of their central nervous system
Speaker 2: in response to that pain. They are literally primed by
Speaker 2: experiencing chronic pain to then experience more pain. Uh huh,
Speaker 2: And yeah, I want to be clear that this is
Speaker 2: not the same thing as saying like, well, you have
Speaker 2: a low pain tolerance, right right, But that's not what
Speaker 2: this means. This means that in response to pain, your
Speaker 2: body reacts and changes and experiences a greater amount of
Speaker 2: pain pain from the same stimuli as someone else because
Speaker 2: of these changes to your brain.
Speaker 1: It makes complete sense, and it's so frustrating that it's
Speaker 1: frustrating not widely known about or understood or taught or researched.
Speaker 2: Right yep. And it's also not saying, like I said,
Speaker 2: that this pain is psychological in origin, because it's not. However,
Speaker 2: it's also really important to point out just how comorbid
Speaker 2: chronic pain conditions like endometriosis and mood disorders like depression
Speaker 2: and anxiety are because this comorbidity having these two things
Speaker 2: together leads to further exacerbation of the experience of pain
Speaker 2: because of disruptions that depression or anxiety have on your
Speaker 2: brain function.
Speaker 1: Right, and I know that, like there has been a
Speaker 1: lot of oh, well, you know your depression or anxiety
Speaker 1: is probably causing you your chronic pain, instead of maybe
Speaker 1: considering that it might be that persistent, never ending, excruciating,
Speaker 1: inescapable pain might lead to I don't know, say a
Speaker 1: bit of depression or anxiety, Like, couldn't that be the case? Yeah?
Speaker 2: Yeah, and then both of those things change your brain
Speaker 2: architecture to make them both worse, like a self fulfilling prophecy.
Speaker 1: Uh huh.
Speaker 2: Yeah, it's not great. Yeah, it's really not great. The
Speaker 2: other biggest sequelle of endometriosis is infertility or difficulty conceiving.
Speaker 2: And again here we don't know why. Huh really yeah,
Speaker 2: we don't know if it's because of scar tissue that
Speaker 2: can form, especially if it's from endometrioma's on the ovary,
Speaker 2: like scarring the ovary or disrupting the number of ovarian
Speaker 2: follicles that you have left, or if it can cause
Speaker 2: scarring in the Filippian tubes, or there's some thought that
Speaker 2: it's just from how much inflammation exists in the pelvis
Speaker 2: because of endometriosis, because again, it's an open cavity between
Speaker 2: your ovary and your Philippian tubes, so small space, but
Speaker 2: it's all bathed in the same fluid. And so if
Speaker 2: that fluid is full of inflammation, then how is that
Speaker 2: egg supposed to make it safely into the uterus? Right,
Speaker 2: So we don't really know the mechanisms, but endometriosis is
Speaker 2: strongly associated with difficulty either getting pregnant or carrying a
Speaker 2: pregnancy to term, but especially in getting pregnant. And let's
Speaker 2: talk about something that can have a huge impact on
Speaker 2: your mental and emotional well being, especially in a society
Speaker 2: that often ties a uterus holder's worth to their ability
Speaker 2: to conceive. Like, that's not small potatoes. That's a big deal, right, yep,
Speaker 2: Yeah it is. What else do you want to know
Speaker 2: about endometriosisarian, because that was a lot.
Speaker 1: I mean, I would ask about treatment, but.
Speaker 2: M want you want me to answer that, I'll will
Speaker 2: answer it. Yeah, Okay, treatment is a mixed bag. Yeah,
Speaker 2: So some people with endometriosis respond very well to hormonal
Speaker 2: birth control, either combined contraceptives or something like an implant
Speaker 2: or an iud, and that can be hugely beneficial. It
Speaker 2: can lighten periods, it can make them stop altogether, it
Speaker 2: can substantially reduce pelvic pain. But for anywhere from a
Speaker 2: quarter to a third of people, that doesn't work at all,
Speaker 2: or they can't even try it because of other comorbidities
Speaker 2: or risk factors they might have, or maybe they want
Speaker 2: to become pregnant.
Speaker 1: Or maybe hormonal birth control pills have just never really
Speaker 1: have messed with other parts of their right. There is
Speaker 1: day to day life.
Speaker 2: There's a lot of risk factors associated with birth control
Speaker 2: as well. So for some then the next kind of
Speaker 2: step can be what are called GnRH ganadotropin releasing hormone agonists,
Speaker 2: which essentially put you into early menopause. That's what they do.
Speaker 2: They block all of the hormones associated with the menstrual cycle,
Speaker 2: like much more completely than combined contraceptives alone. But again
Speaker 2: they have their very long list of side effects hot flashes,
Speaker 2: skin changes, acne, mood changes. These can also affect your
Speaker 2: bone mineralization and bone density, so they put you at
Speaker 2: risk for like osteoporosis. And even these don't always work,
Speaker 2: so then they're surgery, and surgery sometimes is still cited
Speaker 2: as the kind of gold standard or the only quote
Speaker 2: real way whatever to diagnose and on triosis, yeah, the
Speaker 2: trend is moving away from that, thankfully, Okay, okay.
Speaker 1: And how much does that vary country by country.
Speaker 2: It's a good question that I don't know the answer.
Speaker 1: To, Okay.
Speaker 2: Yeah, But in general, the consensus in the medical literature
Speaker 2: is moving away from surgery as a necessary diagnostic step,
Speaker 2: because it used to be that you had to have
Speaker 2: histological proof of endometrial tissue outside of the uterus to
Speaker 2: call it endometriosis, and the only way you could get
Speaker 2: that was from surgery. But now we have other methods
Speaker 2: of being able to identify it, not only just with
Speaker 2: like clinical history, but also with imaging modalities like MRI
Speaker 2: and ultrasound, which can help to identify some kinds of endometriosis.
Speaker 2: But surgery is often also seen as a treatment option,
Speaker 2: So ablation or excision of the endometrio lesians and help
Speaker 2: improve pain for a lot of people, but it can
Speaker 2: also in some cases create more inflammation and more adhesions,
Speaker 2: which can then exacerbate symptoms or possibly even lead to
Speaker 2: more endometriosis lesions. If we think that it's inflammation that's
Speaker 2: the driver rather than vice versa.
Speaker 1: That makes sense.
Speaker 2: Yeah, right. And hysterectomy or removal of the uterus with
Speaker 2: or without removal of the ovaries along with it used
Speaker 2: to be seen as curative, used to be done all
Speaker 2: the time. Oh, still is done a lot. It is
Speaker 2: not curative, but it is still done sometimes for people. So, yeah,
Speaker 2: that's the treatment for endometriosis. It's not great. We don't
Speaker 2: have a lot and especially when it comes to the pain.
Speaker 2: Medicine today in twenty twenty one is bad at treating pain,
Speaker 2: especially chronic pain. We don't have a lot of good
Speaker 2: options for it. So that part of endometriosis is very
Speaker 2: difficult if these other therapies aren't effective. So it's a bummer, Aaron.
Speaker 1: I mean, it's infuriating, it is.
Speaker 2: Yeah, And that was the longest biology section I've ever done.
Speaker 1: How there's a lot to unback despite the fact that
Speaker 1: we are still left with so many questions.
Speaker 2: Right, we don't know anything, and yet I talked for
Speaker 2: an hour, so erin, tell me all about it. How
Speaker 2: did we get here? And why? Why?
Speaker 1: Why? Yeah? I will start on the longest history section
Speaker 1: right after this break. Before reading about endometriosis, I figured
Speaker 1: that it would be one of those episodes that followed
Speaker 1: like a relatively straightforward formula, like what evolutionary significance does
Speaker 1: it have? When was it first written about or first
Speaker 1: identified as a medical condition? Who discovered it? How has
Speaker 1: our knowledge about the pathophysiology changed over the last hundred years,
Speaker 1: and how have we gotten better at treating it? Yeah,
Speaker 1: and it's true, I did come across a lot of
Speaker 1: information while researching that would answer those questions and fit
Speaker 1: into that formula, But as I read more, I felt
Speaker 1: like that wasn't what I wanted to talk about. What
Speaker 1: I found more compelling and in my opinion, more important,
Speaker 1: was how the entire story of endometriosis kind of perfectly
Speaker 1: encapsulates many aspects of misogyny and gender inequality in medicine,
Speaker 1: and the implicit and explicit biases that often keep women
Speaker 1: from getting the healthcare they need and deserve. So that's
Speaker 1: what I'm going to talk a lot about today. Good,
Speaker 1: and before I dive in, I want to briefly discuss
Speaker 1: the language I'll be using. The story of endometriosis involves
Speaker 1: aspects of both sex aka common biological differences between males
Speaker 1: and females, as well as gender aka the socially constructed
Speaker 1: roles that vary between gender and that people identify with.
Speaker 1: And as you mentioned, Aaron, endometriosis can affect people who
Speaker 1: don't identify as women. It can affect people assigned female, male,
Speaker 1: or intersex at birth, and its label as a female
Speaker 1: only or women's disease can be very damaging and can
Speaker 1: delay diagnosis even further for those that don't fit the
Speaker 1: description of a typical ENDO patient, whatever that means. But
Speaker 1: much of what I'll be talking about today is a
Speaker 1: gendered issue. It has to do with the way that
Speaker 1: women are perceived in medicine and how that impacts their treatment.
Speaker 1: The fact that endometriosis primarily occurs in people assigned female
Speaker 1: at birth has given rise to many of the social
Speaker 1: issues and medical disparities surrounding endometriosis. Many of these issues,
Speaker 1: such as how people experiencing pain are perceived by medical providers,
Speaker 1: are discussed in the literature and in scientific studies using
Speaker 1: the terms men and women without saying whether they mean
Speaker 1: sex or gender, but generally we're speaking referred to cisgender people.
Speaker 1: This is definitely a huge limitation of these studies and
Speaker 1: of this discussion as well, especially since there are many
Speaker 1: ways that trans or gender non binary people are treated
Speaker 1: differently than SIS people in medicine, often in ways that
Speaker 1: negatively impact their health. And I'm going to try my
Speaker 1: best to be inclusive and not to ignore the experiences
Speaker 1: of those people or exclude them from this history. But
Speaker 1: studies examining those aspects are scarcer, Yeah.
Speaker 2: Like horrifically scarcer, as in almost non existent.
Speaker 1: Basically, yeah, almost non existent. Okay, So let's dive in.
Speaker 1: Like I said, I want to talk broadly about medical
Speaker 1: bias against women and what that means for endometriosis. But
Speaker 1: in order to do that, I should first tell you
Speaker 1: a bit about the history of endometriosis.
Speaker 2: Yeah, tell me a little right.
Speaker 1: Evolution first, Why does endometriosis exist? I mean, I have
Speaker 1: no idea, let's be clear, but you know I have
Speaker 1: some food for thought. Maybe so. As you said, Aaron,
Speaker 1: endometriosis is often associated with infertility or subfertility. And while
Speaker 1: we don't have a complete grasp on what causes endometriosis,
Speaker 1: like you said, Aaron, heredity does seem to play a part,
Speaker 1: and many diseases are caused by a mixture of genetic
Speaker 1: predisposition and environmental factors, and it seems like in the
Speaker 1: case of endometriosis, I've read that it's about fifty percent
Speaker 1: genes and fifty percent environmental factors.
Speaker 2: Yeah, that's what I read as well.
Speaker 1: Yeah, so it seems like it should be selected against
Speaker 1: at least a little bit just by virtue of the
Speaker 1: fact that people with endometriosis tend to be less likely
Speaker 1: to pass on those alleles or the predisposition for ENDO.
Speaker 1: But that's not what the numbers seem to show. And
Speaker 1: as I'm sure you'll talk more about, endometriosis is incredibly common,
Speaker 1: Like I've seen estimates from ten to fifteen percent, and
Speaker 1: those frankly seem like they could be conservative estimates or underestimates,
Speaker 1: because I'm sure many people with endometriosis never get a
Speaker 1: diagnosis for any number of reasons, such as whether they
Speaker 1: can afford to see a doctor, to take time off
Speaker 1: work and find reliable transport to a doctor, or even
Speaker 1: if they can see a doctor, maybe they're just dismissed
Speaker 1: or called dramatic, or maybe they just don't know that
Speaker 1: debilitating periods aren't normal because periods are a taboo discussion topic.
Speaker 2: I feel like that's such an important one because it's
Speaker 2: still so common today that people have no idea that
Speaker 2: they don't have to exist or they shouldn't have to
Speaker 2: exist in that much pain, Like that shouldn't be normal.
Speaker 1: I mean even periods themselves. Do we need to have periods? Like, no, no,
Speaker 1: we don't. It's very interesting anyway. So yeah, and then
Speaker 1: of course, on top of all of those factors, there
Speaker 1: are these racial and economic disparities in obtaining a diagnosis
Speaker 1: that are very frustrating. Doesn't really begin to cover it.
Speaker 1: But yeah, but whether it's ten to fifteen percent or
Speaker 1: likely much higher, endometriosis is extremely prevalent, and again more
Speaker 1: than it seems like it should be, maybe for something
Speaker 1: that can affect fertility. But remember that it's not just
Speaker 1: your genes determining whether or not you get endometriosis. It's
Speaker 1: also environmental factors. And it turns out that endometriosis might
Speaker 1: not deserve the reputation it has for causing infertility. So
Speaker 1: it seems like in a lot of the literature and
Speaker 1: estimate around thirty percent is often reported, but more recent
Speaker 1: studies put it actually lower at about ten to thirteen percent.
Speaker 2: Of people with endometriosis that will have infertility, got it right.
Speaker 2: I think most of the most of this numbers that
Speaker 2: I saw cited was like, of people with infertility, how
Speaker 2: many of them have endometriosis, which is a very interesting
Speaker 2: way to look at the statistics.
Speaker 1: It is, yeah, but yeah, so it seems like this
Speaker 1: reputation that endometriosis has for basically being a one to
Speaker 1: one infertility is not necessarily yeah the case. And I
Speaker 1: also read a couple of papers that proposed an evolutionary
Speaker 1: explanation for endometriosis. So I will admit I feel a
Speaker 1: little bit out of my depth here, but I'm going
Speaker 1: to just attempt to do my best. Essentially, in these papers,
Speaker 1: which were from twenty twenty one, the authors suggested that
Speaker 1: endometriosis and polycystic ovarian syndrome are opposites. Did you know
Speaker 1: this paper?
Speaker 2: I saw that paper and I was like, ooh, what's
Speaker 2: this baby? Interesting? Or and interesting?
Speaker 1: Mm hmmm mm hmmm. And so endo and PCOS are
Speaker 1: at these like two extremes of a spectrum. This is
Speaker 1: what the author suggested that is determined by levels of
Speaker 1: prenatal testosterone exposure, with high prenatal levels equaling pcos and
Speaker 1: low prenatal levels equaling endometriosis. So during development, if a
Speaker 1: fetus is exposed to levels of testosterone that are outside
Speaker 1: the quote normal range, certain traits associated with fertility or
Speaker 1: fecundity are brought to their extremes. And the way that
Speaker 1: I started thinking about this was like too much of
Speaker 1: a good thing. So individually, these traits might be helpful
Speaker 1: for fertility, but when you have too many of those
Speaker 1: traits or they are expressed too highly, it can be hurtful.
Speaker 1: So something like uterine contractions, it's great for when you
Speaker 1: have fetus with a big head in there, but horrible
Speaker 1: for when you have menstrual cramps that lay you flat.
Speaker 1: Or like inflammation. Right, high levels like inflammation is good,
Speaker 1: it helped what keeps us healthy. To high levels of
Speaker 1: inflammation can be really, really bad. So taking all that together,
Speaker 1: I feel like we can start to see why endometriosis
Speaker 1: exists and why we see it in fairly prevalent numbers today.
Speaker 1: So my next question is do we have more endo
Speaker 1: today than we've had in the past. How long has
Speaker 1: endometriosis been around. Endometriosis often gets called a modern disease
Speaker 1: or a modern epidemic. Did you come across papers describing
Speaker 1: it that way?
Speaker 2: No, but I'm not surprised, Okay.
Speaker 1: I don't like this for a number of reasons. First,
Speaker 1: I don't love the term modern epidemic to describe endometriosis
Speaker 1: because I'm not convinced that we have enough data about
Speaker 1: historical rates to say whether there's an actual increase or
Speaker 1: if it's just that we're more aware of it so
Speaker 1: it's diagnosed more often. Second, is that calling it a
Speaker 1: modern disease implies that it has emerged only recently, which
Speaker 1: is untrue. Humans have probably been experiencing endometriosis for millennia,
Speaker 1: as I'll get into and some people who defend the
Speaker 1: use of the term modern to describe endometriosis say that
Speaker 1: it's because it was only defeat find as a clinical
Speaker 1: entity within the past one hundred to one hundred and
Speaker 1: fifty years, and that definitive diagnosis by examining tissue under
Speaker 1: a microscope was only possible in the last one hundred years.
Speaker 1: So despite the existence of ancient medical texts describing abnormal
Speaker 1: bleeding associated with pelvic pain, and infertility. Those descriptions apparently
Speaker 1: aren't specific enough to be called endometriosis, which I'll grant
Speaker 1: is fair. Retrospective diagnosis is always a.
Speaker 2: Problem, Yeah, and there's a lot of things that can
Speaker 2: cause pelvic plane and abnormal bleeding.
Speaker 1: Absolutely, but I still think it's misleading to call endometriosis modern.
Speaker 2: I agree because I feel like.
Speaker 1: By that definition, there are a whole lot of diseases
Speaker 1: that have likely been with humans for millennia, but quote
Speaker 1: discovered only recently. Does a disease exist only when it's
Speaker 1: been given a name and a clinical description, No, of course.
Speaker 1: Not that said, it is possible that endometriosis is on
Speaker 1: the rise, and we should look to see if it is,
Speaker 1: and if it is the case, we should obviously try
Speaker 1: to find out why. But endometriosis is an ancient disease.
Speaker 1: There are descriptions of painful menstruation which could be endo,
Speaker 1: dating back to eighteen fifty five BCE from ancient Egypt
Speaker 1: and then again in ancient Greece in the Hippocratic text
Speaker 1: from the fifth and fourth centuries BCE, describing menstrual dysfunction
Speaker 1: as a cause of disease with pain and infertility. Resulting
Speaker 1: if left untreated, and pregnancy as a possible cure, which,
Speaker 1: despite not being true not being a cure, is often
Speaker 1: still recommended today. In fact, I read in one book
Speaker 1: for this episode that somebody commented on a Facebook page
Speaker 1: for a group called Endoactive about this quote. My doctor
Speaker 1: told me having a baby would help my pain. I'm
Speaker 1: only eleven. What uh huh yeah?
Speaker 2: Oh no, mm hm oh.
Speaker 1: No erin, yeah, I've been mad for oh time. I've
Speaker 1: been researching this.
Speaker 2: I'm not going to get over that one.
Speaker 1: I know, I know. Yeah. So In these hippocratic texts
Speaker 1: are also the descriptions of the group's most susceptible to
Speaker 1: these gynecological disorders, women who remained childless, young widows, and
Speaker 1: virgins who had already menstruated but remained unmarried, some of
Speaker 1: which sounds disturbingly familiar to the nickname that was given
Speaker 1: to endometriosis in the nineteen sixties to the nineteen eighties
Speaker 1: or so. The quote career woman's disease.
Speaker 2: Oh my god. I saw that in one paper and
Speaker 2: I barfed in my mouth. I don't.
Speaker 1: Basically, it's like, well, you put off your child bearing
Speaker 1: duties and rejected your social and gender role. So this
Speaker 1: is what you get.
Speaker 2: It's the natural consequence.
Speaker 1: Uh huh. Obviously, the Hippocratic texts didn't refer to these
Speaker 1: symptoms as endometriosis or as even like one specific disease,
Speaker 1: but rather they were part of what was called hysteria,
Speaker 1: after the Greek word for the uterus. And I'll talk
Speaker 1: more about the history of hysteria and its wandering definitions
Speaker 1: in a bit, but first I want to wrap up
Speaker 1: the history of endometriosis. Even though they are tied together,
Speaker 1: so many people who were diagnosed with hysteria probably had endo. Anyway,
Speaker 1: from those ancient texts describing pain during menstruation and abnormal periods,
Speaker 1: there doesn't really seem to be a ton of other
Speaker 1: mentions of what could be endometriosis, not because people weren't
Speaker 1: experiencing it, but likely because there was and is a
Speaker 1: huge taboo surrounding menstruation. From Leviticus in the Old Testament quote,
Speaker 1: if a woman has a discharge, and the discharge from
Speaker 1: her body is blood, she shall be set apart seven days,
Speaker 1: and whoever touches her shall be unclean until evening. Fast
Speaker 1: forward to the first time that the word period was
Speaker 1: said on television, like you know, like menstrual period nineteen
Speaker 1: eighty five no Way by Courtney Cox in a tampon commercial.
Speaker 2: Wow, uh huh, so I'm sorry before that they had
Speaker 2: tampon commercials without saying the word period.
Speaker 1: Or did they have tampon commercials?
Speaker 2: Maybe they didn't have tampons.
Speaker 1: The history of the tampon would be a fascinating one
Speaker 1: to research.
Speaker 2: There is so we haven't even done just like regular menstruation.
Speaker 2: I know, I know, you know anyways.
Speaker 1: Anyways, but we have been conditioned to think of periods,
Speaker 1: these absolutely normal things, as gross and shameful when they
Speaker 1: are neither, and that stigma surrounding periods can lead to
Speaker 1: this damaging silence where because we are shamed from talking
Speaker 1: about periods because it's not polite conversation, we don't know
Speaker 1: whether our own periods are normal because we don't hear
Speaker 1: the experiences of others.
Speaker 2: Right.
Speaker 1: The persistent labeling of menstrual periods as a distasteful and
Speaker 1: shameful subject has profound implications for public health, and it
Speaker 1: creates enormous inequities for people who menstruate. In most states, tampons,
Speaker 1: for example, are subject to sales tax and Also, in
Speaker 1: most states prisons charge inmates for menstrual products. I know,
Speaker 1: there's just so much, so much, There's so much. But
Speaker 1: circling back to the history part of this, maybe the
Speaker 1: reason that endometriosis doesn't show up very much until basically
Speaker 1: the eighteen hundreds is because the people writing medical texts
Speaker 1: were primarily men, most of whom would have considered it
Speaker 1: deeply improper and probably gross to ask a woman about
Speaker 1: her periods. It's absolutely possible and likely that women discuss
Speaker 1: periods amongst themselves, and there was probably a great deal
Speaker 1: of knowledge held by women healers, which was mostly lost
Speaker 1: as medical licensing laws came into effect, which both prohibited
Speaker 1: them from practicing reasonable licenses are good and even applying
Speaker 1: to medical school. If you weren't a white, wealthy man,
Speaker 1: you weren't getting in. But with the increasing popularity of
Speaker 1: autopsies in the nineteenth century, people begin linking more and
Speaker 1: more signs and symptoms of disease with pathological changes in
Speaker 1: the body. Karl Vaughan Rokotansky, whose name you may remember
Speaker 1: from our pupil Fever episode, he was friends with and
Speaker 1: worked at the same hospital as Semmelweis and he was
Speaker 1: like the King of autopsies. He performed an incredible number
Speaker 1: of autopsies. Rokitansky is usually credited with being the first
Speaker 1: person to describe endometrio lesions. In the eighteen sixties, he
Speaker 1: published a paper where he wrote that quote some fibrous
Speaker 1: tumors of the uterus contained glandi like structures that resemble
Speaker 1: endometrio glands end quote YEA. And there was a series
Speaker 1: of autopsy studies done by other physicians from England, Germany,
Speaker 1: Holland and Scotland also in the eighteen hundreds that went
Speaker 1: further than Rokitansky to characterize the disease. But it wasn't
Speaker 1: until nineteen twenty one that it was given the name
Speaker 1: endometriosis by John Sampson, who is an American gynecologist who
Speaker 1: also did the first systematic study of the disease and
Speaker 1: proposed a hypothesis that is still the most popular today,
Speaker 1: the mensru Back hypothesis. The papers published by Samson marked
Speaker 1: a turning point in the history of endometriosis. They turned
Speaker 1: it from a medical curiosity into a clinical entity, and
Speaker 1: now that it had a name, it meant that information
Speaker 1: could be compiled and shared under that name. Receiving a
Speaker 1: diagnosis itself didn't do much good similar to today, in
Speaker 1: many cases and often did harm because, like you said, Aaron,
Speaker 1: usually a complete removal of the uterus was suggested as
Speaker 1: the only effective treatment. A couple of decades after Samson's papers,
Speaker 1: endometriosis of the lungs, large bowel, colon, rectum, bladder, lymph node, cervix,
Speaker 1: round ligaments, and so on had been reported, and physicians
Speaker 1: began to realize that it was a lot more prevalent
Speaker 1: than Samson had thought, who described it as a rare disease.
Speaker 1: Laparoscopic surgery began to be more regularly used for the
Speaker 1: removal of lesions starting in around the late nineteen seventies
Speaker 1: early nineteen eighties, But frankly, is as you went over,
Speaker 1: not a whole lot of progress seems to have been
Speaker 1: made since. Like, yes, we know more about endometriosis now
Speaker 1: than we did one hundred years ago, but we're still
Speaker 1: limited in treatment and hugely lacking in awareness among both
Speaker 1: medical professionals as well as the general public, which has
Speaker 1: led in part to the ridiculous delay in endometriosis diagnosis.
Speaker 1: I mean, I've seen estimates of six to twelve years.
Speaker 2: Yeah, I've seen even higher sometimes like ten to fifteen
Speaker 2: years lag between symptoms and diagnosis, right.
Speaker 1: And this delay is of course not equal across racial
Speaker 1: and economic groups, with people of color and those in
Speaker 1: lower economic classes experiencing a much longer delay. So what
Speaker 1: I wanted to take time to explore in more depth
Speaker 1: was why this damaging diagnostic delay exists. Why is it
Speaker 1: six to twelve years or ten to fifteen years. Why
Speaker 1: do we still not seem to know very much about endometriosis,
Speaker 1: what causes it, how to treat it, why do some
Speaker 1: people get it and others don't? And exploring those questions
Speaker 1: kind of led me into reading more generally about the
Speaker 1: pervasive mistreatment and under treatment of women by the medical system.
Speaker 1: Right off the bat, I want to mention the books
Speaker 1: that I read for this because I'll probably be quoting
Speaker 1: from them a lot, one in particular, and they are
Speaker 1: phenomenal and I learned so much and got so angry
Speaker 1: along the way. Doing Harm by Maya duson Berry and
Speaker 1: Pain and Prejudice by Gabrielle Jackson are both nonfiction books
Speaker 1: about the systemic issues in medicine and how women are treated.
Speaker 1: Ask me About My Uterus by Abbie Norman and Giving
Speaker 1: Up the Ghost by Hillary Mantel are memoirs about endometriosis.
Speaker 1: Hillary Mantel's book includes a section on her experience with enemytriosis.
Speaker 1: It's not entirely about endo. I loved them all and
Speaker 1: you should read them all, Okay. So the way that
Speaker 1: I wanted to structure this discussion is taken directly from
Speaker 1: Maya Dusenberry's Doing Harm. In this incredible book, she lays
Speaker 1: out what she calls the knowledge gap and the trust gap.
Speaker 1: The knowledge gap is basically that there isn't as much
Speaker 1: scientific and medical knowledge about women's bodies and health issues
Speaker 1: than there is about men's. And this goes all the
Speaker 1: way from the very basic biomedical research only including male
Speaker 1: animals and studies all the way to women being underrepresented
Speaker 1: in clinical trials and diseases specific to women receiving less funding.
Speaker 1: The trust gap is simply that quote women's accounts of
Speaker 1: their symptoms are too often not believed. The trust gap
Speaker 1: and the knowledge gap don't operate independently. They rea enforce
Speaker 1: each other to perpetuate the mistreatment and under treatment of
Speaker 1: women by the medical system. Quote from Dusomberry, women's symptoms
Speaker 1: are not taken seriously because medicine doesn't know as much
Speaker 1: about their bodies and health problems. And medicine doesn't know
Speaker 1: as much about their bodies and health problems because it
Speaker 1: doesn't take their symptoms seriously end quote. Dusomberry points out
Speaker 1: that these issues aren't about a few bad apples in
Speaker 1: the medical system mistreating women, but rather the unconscious bias
Speaker 1: that is structurally embedded in medicine. So let's explore these
Speaker 1: two facets in a bit more depth, starting with the
Speaker 1: knowledge gap. As with any structurally embedded issue we discuss
Speaker 1: on the podcast, the knowledge gap has deep roots, stemming
Speaker 1: from the hundreds of years during which women were seen
Speaker 1: as biologically inferior to men and whose bodies were either
Speaker 1: not worthy of study or improper to examine. They were studied,
Speaker 1: for instance, by the so called father of gynecology, Mary
Speaker 1: and Simms, who built the profession on the backs of
Speaker 1: enslaved women. They were essentially tortured, given no anesthesia or
Speaker 1: pain relief, seen to be subhuman. The ideal baseline that
Speaker 1: defined what was medically quote normal or human was a
Speaker 1: white adult male, and let's be honest, a wealthy one.
Speaker 1: This is pretty clear when we look at how menstrual
Speaker 1: periods were described in medical texts throughout the eighteen hundreds
Speaker 1: as times of ill health. Anytime a woman was either pregnant, menstruating,
Speaker 1: or in menopause, she was considered unwell and her thoughts
Speaker 1: scattered and disturbed, which was used in arguments against women
Speaker 1: being allowed to attend universities and higher education. Anyway, was
Speaker 1: thought to atrophy the uterus.
Speaker 2: Atrophy the uterus. I can't have that absolutely though. Brain thinking.
Speaker 1: And this perception of periods, of course, didn't just disappear
Speaker 1: suddenly in nineteen hundred. There's even a textbook from the
Speaker 1: nineteen seventies that describes dysmenorrhea as a symptom of a
Speaker 1: personality disorder.
Speaker 2: I don't have any words. I'm just going to keep
Speaker 2: fish mouthing over.
Speaker 1: So that just made me think that there are probably
Speaker 1: some physicians still practicing today that may have been trained
Speaker 1: on that information.
Speaker 2: Oh definitely, yeah.
Speaker 1: Up until at least the nineteen nineties. Although you could argue,
Speaker 1: probably successfully that it's still the case today. It wasn't
Speaker 1: that science knew nothing about women's bodies and health. It
Speaker 1: was just that they knew a lot less than they
Speaker 1: did about men's and let's look at why this is.
Speaker 1: As I mentioned earlier, the medical licensing laws enacted in
Speaker 1: the eighteen hundreds in effect excluded women and people of
Speaker 1: color from practicing medicine and contributing to the field. Those
Speaker 1: that remained were white, wealthy men, and so a white
Speaker 1: male as the baseline for comparison, and the health ideal
Speaker 1: became entrenched in medical training and medical knowledge well into
Speaker 1: the twentieth century. The nineteen sixties and nineteen seventies saw
Speaker 1: a great deal of change in terms of medical ethics,
Speaker 1: as things like Tuskegee and tholidamide revealed the enormous failings
Speaker 1: of informed consent and protections for vulnerable individuals. Many of
Speaker 1: these developments in drug safety studies were overwhelmingly positive in
Speaker 1: terms of preventing people from being coerced into unsafe studies
Speaker 1: and being harmed, But one unintended consequence was when protection
Speaker 1: turned paternalistic, essentially preventing women from being included in drug
Speaker 1: trials simply because they were women, or, more specifically, in
Speaker 1: the nineteen seventy seven FDA policy excluding women of quote
Speaker 1: child bearing potential from early phase drug studies. This meant
Speaker 1: anyone who potentially could get pregnant.
Speaker 2: Right, anyone with a uterus that was presumed to be working, right, Yeah, yeah,
Speaker 2: any does any of.
Speaker 1: Them, any of them, doesn't matter, doesn't matter. This is
Speaker 1: a complicated subject, of course, because ensuring that no coercion
Speaker 1: occurs with informed consent is still tricky, and there are
Speaker 1: potential risks associated with participating in clinical trials. But also
Speaker 1: without the inclusion of women of quote child bearing potential
Speaker 1: in these studies, how would we know if that drug
Speaker 1: is safe or effective for them. This is especially problematic
Speaker 1: and tricky in terms of pregnant people, where it's kind
Speaker 1: of like a rock and a hard placed situation, basically
Speaker 1: forcing a choice between including pregnant people in clinical trials
Speaker 1: which could put the fetus and the person at risk,
Speaker 1: or in effect testing it out on them later in
Speaker 1: an uncontrolled fashion, hoping that the studies showing it safe
Speaker 1: in people who are not pregnant will mean that it's
Speaker 1: safe for pregnant people. It's complicated, and I'm not going
Speaker 1: to go into it here because I just don't have
Speaker 1: the background knowledge to do so. But one thing that
Speaker 1: does seem to be clear is that there is underrepresentation
Speaker 1: of women and pregnant people in clinical trials.
Speaker 2: That's why all drugs during pregnancy just have these like
Speaker 2: wacky like, well, we don't know if it's safe, but
Speaker 2: we don't know if it's harmful, so it's probably fine.
Speaker 2: Like the scales that you use to define whether or
Speaker 2: not something is safe in pregnancy or not the same
Speaker 2: as when you're not pregnant.
Speaker 1: Uh huh. It's it's far from a perfect system and
Speaker 1: it means a lot of work.
Speaker 2: Yeah, but the lack of.
Speaker 1: Inclusion of women in medical studies can't all be chalked
Speaker 1: up to this protective policy. Women were also explicitly excluded
Speaker 1: simply because they were women. Explanations ranged from, well, men
Speaker 1: and women are so similar that results from an all
Speaker 1: men's study can be extrapolated to women. To women's menstrual
Speaker 1: cycles and hormonal shifts could confuse the study results. You
Speaker 1: can't have it both ways exactly. A. If results from
Speaker 1: men only studies could be extrapolated to women, then why
Speaker 1: weren't there any all women studies that were extrapolated to men. B.
Speaker 1: If there were no meaningful differences between men and women,
Speaker 1: why not include them both in the clinical trial. See
Speaker 1: if menstruation could significantly affect the results of a drug trial,
Speaker 1: why on earth is it not a reason then to
Speaker 1: include women rather than to execs gluede them. And the
Speaker 1: answer to all of these here's another quote, And I
Speaker 1: just I should say that unless I say differently. These
Speaker 1: quotes are from doing harm by Maya Dusonberry quote. In short,
Speaker 1: studying only one sex was cheaper and easier, and men
Speaker 1: were the chosen ones because women's bodies were thought to
Speaker 1: be too complicated.
Speaker 2: Yeah.
Speaker 1: Yeah, And there's also the matter that the medical community,
Speaker 1: which since its infancy had been comprised primarily of men,
Speaker 1: either consciously or subconsciously, felt that to know the health
Speaker 1: effects on men was enough, right, Like, well, we know
Speaker 1: it on men, so that's that's good, right, Like.
Speaker 2: Yep, that's all we need.
Speaker 1: And maybe it wasn't this malicious thing. Maybe it just
Speaker 1: wasn't even thought about women. Didn't women didn't even enter
Speaker 1: into the consideration, which feels malicious, even though I'm saying
Speaker 1: it as it wasn't malicious. I don't know. But it
Speaker 1: wasn't until the late nineteen eighties that enough women were
Speaker 1: involved in the medical community to bring these enormous gender
Speaker 1: disparities in medical research to light. At this time, a
Speaker 1: group of scientists who were women formed what is now
Speaker 1: known as the Society for the Advancement of Women's Health Research,
Speaker 1: and they demanded an audit by the Government Accounting Office
Speaker 1: the GOAO of the NIH's research efforts to see how
Speaker 1: well they had stuck to the nineteen eighty five Policy
Speaker 1: for the Inclusion of Women in Research. This GOAO report,
Speaker 1: which was published in nineteen ninety, was staggering. They had
Speaker 1: done next to nothing. In most of the studies that
Speaker 1: the NIH funded. They couldn't say whether women were included,
Speaker 1: or if they were how many. So far, I've talked
Speaker 1: about this more generally, right, more and more descriptive, abstract
Speaker 1: women are excluded from studies. Let's get into some more
Speaker 1: solid examples that illustrate the knowledge gap. For example, there's
Speaker 1: a famous study called the Baltimore Longitudinal Study of Aging
Speaker 1: that was started in nineteen fifty eight and aimed to
Speaker 1: study quote, normal human aging. This was the one that
Speaker 1: found that a baby aspirin a day could be protective
Speaker 1: against heart disease. You know that, Like now, that's conventional
Speaker 1: wisdom or whatever. Yeah, that study didn't include women, included
Speaker 1: thousands of men. It didn't include women for twenty years.
Speaker 1: Another large scale study started in nineteen eighty two, whose
Speaker 1: aim was to study the effects of dietary change and
Speaker 1: exercise on heart disease, included thirteen thousand men and zero women,
Speaker 1: despite the fact that heart disease is and was then
Speaker 1: one of the leading causes of death in women. And
Speaker 1: then there's this, I think it takes the cake quota
Speaker 1: directly again from doing harm by Maya Dusonberry. There's a
Speaker 1: quote and then a quote within a quote. So the
Speaker 1: inception of quotes quote, and NIH supported pilot study from
Speaker 1: Rockefeller University that looked at how obesity affected breast and
Speaker 1: uterine cancer didn't enroll a single woman.
Speaker 2: I'm sorry, breast and uterine cancer.
Speaker 1: It is true that people assigned male at birth do
Speaker 1: develop breast cancer.
Speaker 2: Uh huh, and uterine cancer, Aaron, I.
Speaker 1: Don't think so.
Speaker 2: Yeah, No, you need a uterus for that.
Speaker 1: Yeah, continuing the quote, as Representative Snow noted dryly at
Speaker 1: the congressional hearings. Quote, somehow, I find it hard to
Speaker 1: believe that the male dominated medical community would tolerate a
Speaker 1: study of prostate cancer that used only women as research
Speaker 1: subjects and quotes. I can't That one just echoed in
Speaker 1: my head for days. Eh. Nearly anywhere they looked there
Speaker 1: was a striking lack of inclusion of women and enormous
Speaker 1: consequences because of that. Biological differences between people assigned male
Speaker 1: at birth and people assigned female at birth have historically
Speaker 1: been used to claim inferiority or superiority while failing to
Speaker 1: examine the potential health impact of that difference, such as
Speaker 1: in the way drugs are metabolized, which is impacted by
Speaker 1: fat distribution and hormones, among other factors. So when women
Speaker 1: aren't included in drug trials, should we be surprised by
Speaker 1: the finding that women are quote fifty to seventy five
Speaker 1: percent more likely than men to have an adverse drug reaction? Like,
Speaker 1: that's not a surprising finding, it's horrible.
Speaker 2: Well, and I also just wonder how many of those
Speaker 2: adverse drug reactions are often just passed off as being oh, well,
Speaker 2: like not real, you know, uh huh, discounted.
Speaker 1: I'm sure many are. Yeah, the dosing of too many
Speaker 1: drugs has been determined by how it affects men's bodies
Speaker 1: and also overall like people within a certain BMI range.
Speaker 1: Or take chronic pain for example, which women are known
Speaker 1: to be disproportionately affected by, and studies indicate that women
Speaker 1: experience pain differently than men. And again, these studies didn't
Speaker 1: make the distinction between whether they were talking about sex
Speaker 1: or gender or whatever. Despite these pain differences, there was
Speaker 1: a study from two thousand and five that found that
Speaker 1: almost eighty percent of animal pain studies used male animals only.
Speaker 1: And while the lack of sex analysis in animal studies
Speaker 1: of all kinds is hugely problematic, it really only captures
Speaker 1: one aspect of the knowledge gap. These studies don't take
Speaker 1: into account the gender bias and social factors that influence
Speaker 1: health and are hugely important to examine. The nineteen ninety
Speaker 1: GAO report did change some things for the better, but
Speaker 1: we're still not even close to equitable, and many studies
Speaker 1: simply fail to report any sex or gender analysis of results.
Speaker 1: There have been suggestions to require the inclusion of such
Speaker 1: analysis for publication in peer reviewed journals, but that has
Speaker 1: been met with some resistance for vague scientific reasons, whatever
Speaker 1: that means. But still, even though things are getting better,
Speaker 1: there is a huge lag time in between when those
Speaker 1: studies are conducted, to when the results are analyzed and published,
Speaker 1: to when it becomes presented to the interested field, to
Speaker 1: then the wider community, to then when it becomes included
Speaker 1: in textbooks, then when it trickles out to the rest
Speaker 1: of the public. Let's illustrate. Picture someone having a heart attack. Okay,
Speaker 1: what do they look like, what are they doing? What
Speaker 1: are the signs and symptoms they seem to be feeling.
Speaker 2: This is a really good example.
Speaker 1: Arin I love this example. Is it an older man,
Speaker 1: probably an older white man, clutching at his left arm
Speaker 1: and his chest.
Speaker 2: Salt and pepper hair, salt and pepper hair.
Speaker 1: Maybe he's got like a short sleeve button up shirt on.
Speaker 2: Definitely, uh huh.
Speaker 1: It was like sweating a lot.
Speaker 2: Sweaty, super sweaty. He describes a pressure in the center
Speaker 2: of his chest which radiates to his left arm and
Speaker 2: maybe up into his jaw. He clutches at his chest
Speaker 2: and then gasping for breath.
Speaker 1: Yeah, how many of you pictured a woman with maybe
Speaker 1: some uncomfortable back pain or flu like symptoms?
Speaker 2: Did anyone anybody?
Speaker 1: Maybe? I thought there are some out there for sure,
Speaker 1: because much of the early research on heart attacks was
Speaker 1: focused on men. That's the search image we have, and
Speaker 1: it can be deadly. Like when a study from two
Speaker 1: thousand found that quote young women and I think by
Speaker 1: this was meant like under the age of fifty are
Speaker 1: seven times more likely to be sent home from the
Speaker 1: hospital in the middle of having a heart attack. Seven
Speaker 1: times those have fatal consequences.
Speaker 2: There, Oh god, Aaron, there's so many good examples of this.
Speaker 2: Do you know about the testicular torsion. One testicular torsion
Speaker 2: It's when your testicle twists on itself and it can
Speaker 2: cut off the blood flow. It's an absolute emergency. Causes
Speaker 2: excruciating pain, okay in the testicles. And they say time
Speaker 2: is tissue. You have six hours to like diagnose and
Speaker 2: treat testicular torsion, and people are really good at it.
Speaker 2: There's a lot of studies in hospitals, like the time
Speaker 2: from into the emergency room to treatment and like into
Speaker 2: the or it's super short. Ovarian torsion.
Speaker 1: I knew you were gonna say that.
Speaker 2: Same exact thing. Okay, You're ovary twists around itself. The
Speaker 2: time from diagnosis to OAR is like I think at
Speaker 2: least twice as long, if not missed entirely, like it
Speaker 2: is staggering.
Speaker 1: Oh yeah, yeah, there are, I mean, honestly, just grab
Speaker 1: bags full of examples about the diagnostic delay for anything,
Speaker 1: the treatment delay, what kind of treatment that's received. I mean,
Speaker 1: in general, men are seen as sick while women are
Speaker 1: seen as stressed. And this, all of these examples that
Speaker 1: you and I just sort of went through, these are
Speaker 1: tied to both the knowledge gap and the trust gap.
Speaker 1: Medical doctors only know what heart attacks look like in men,
Speaker 1: and they are disinclined to believe that women's symptoms are real.
Speaker 1: So now let's get into the trust gap. If you
Speaker 1: thought the knowledge gap had deep roots, wait until you
Speaker 1: hear about the trust gap. In order to explain these roots,
Speaker 1: I'm going to take us through a brief history of hysteria,
Speaker 1: which was first described in ancient Egypt and got its
Speaker 1: name from ancient Greece. Like I said, from the Greek
Speaker 1: word for uterus histra. What is hysteria. It's basically the
Speaker 1: idea that a woman's health and mental status is tied
Speaker 1: directly to her uterus, and that all disease in a
Speaker 1: woman came from the uterus wandering around the body like
Speaker 1: literally wandering, but just like these restless uteri. The definition
Speaker 1: of hysteria has also wandered substantially throughout history. In ancient Greece,
Speaker 1: in hippocratic texts from around the fifth century BCE, it
Speaker 1: seemed to be thought of as an organic biological process,
Speaker 1: one which was likely to happen if marriage was put
Speaker 1: off for too long or if a woman didn't get
Speaker 1: pregnant early enough after puberty. In Europe and the centuries after,
Speaker 1: throughout the medieval period, the meaning changed and became more
Speaker 1: spiritually based, and it was thought that the uterus could
Speaker 1: be inhabited by a demon or evil spirits, or possessed
Speaker 1: via witchcraft, and the uterus became the scapegoat for any
Speaker 1: disease or complaint that a woman had. In hysteria, the
Speaker 1: catch all diagnosis.
Speaker 2: The poor uterus.
Speaker 1: It's so maligned erin it is it is, yeah, it
Speaker 1: hasn't gotten that much better, but it's find somewhat yeah.
Speaker 1: And this quality of hysteria as a disease of exclusion
Speaker 1: it was useful to physicians, especially as the field of
Speaker 1: medicine itself evolved. I've talked before on this podcast about
Speaker 1: how medicine changed substantially when measuring tools began to be
Speaker 1: introduced and measurements began to be compiled for certain diseases
Speaker 1: like blood pressure. You know, what's a normal range, what's not?
Speaker 1: Heart rate, red blood cell count, body temperature, etc. All
Speaker 1: these things. I think in our sickle cell episode, I
Speaker 1: talked about how these tools, in addition to medical specialization,
Speaker 1: led to medicine shifting to be less about the person
Speaker 1: and more about the body or a part.
Speaker 2: Of the body.
Speaker 1: It also led to this important distinction between signs and symptoms.
Speaker 1: Signs being something that someone who is not the patient
Speaker 1: can measure or see or feel. Symptoms are the things
Speaker 1: that only the patient can feel and describe are objective.
Speaker 1: Symptoms subjective. As the ability to detect disease signs became
Speaker 1: more refined, diagnosis increasingly relied on signs rather than symptoms,
Speaker 1: and a physician could listen less or not at all
Speaker 1: to their patient and still end up successfully treating them,
Speaker 1: offering a not so great precedent. But it also meant
Speaker 1: that if there were no signs or the signs didn't
Speaker 1: tell them anything, they could and often did, disregard the
Speaker 1: symptoms as hysterical In of the eighteen hundreds, Jean Martin
Speaker 1: Charcot tried to reclassify hysteria as a neurological disorder rather
Speaker 1: than a personality flaw, believing that believing that the ovaries
Speaker 1: rather than the uterus, diverted energy from the brain during menstruation, pregnancy, lactation, menopause, ovulation, etc.
Speaker 1: And that the brain drained of all this energy could
Speaker 1: barely function and left women weak.
Speaker 2: Poor things just all the time.
Speaker 1: Plaques and lesions that Charco found around the ovaries and
Speaker 1: uterus during autopsies confirmed his hypothesis to him and led
Speaker 1: to an increase in gynecological surgeries such as the removal
Speaker 1: of the ovaries, the uterus or the clitorists surgeries which
Speaker 1: were permanently damaging, if not fatal, which around fifty to
Speaker 1: seventy percent were in like the mid eighteen hundreds. I'm
Speaker 1: not going to get into Charco's ovary presser, but suffice
Speaker 1: it to say that he carried out extensive medicalized torture
Speaker 1: on women and asylums to try to confirm his ideas
Speaker 1: about hysteria. Yea yea. From a wandering uterus to demonic
Speaker 1: possession to a neurological disease. Hysteria had one more major
Speaker 1: transformation to undergo, and it was this final one that
Speaker 1: left such an enduring mark on how women are perceived
Speaker 1: in medicine today. Enter Freud, one of the worst, one
Speaker 1: of the worst. I'm going to try not to talk
Speaker 1: about him too much.
Speaker 2: Simply because, like any more airtime.
Speaker 1: Well, I think he's important to talk about because of
Speaker 1: the damage that he's done, but I also want to
Speaker 1: get past him because there's just there's not enough time
Speaker 1: in the world to do all of this. So Freud
Speaker 1: initially jumped on the Charcot train of hysteria as a
Speaker 1: neurological disorder, but then changed his mind, turning it into
Speaker 1: a disease that was entirely psychological, often attributed to the
Speaker 1: underdevelopment of libido or sexuality, or the rejection of feminine
Speaker 1: values or feminine traits. Cured through talk therapy. What this
Speaker 1: did was turn real things that women were experiencing pain, fatigue,
Speaker 1: heavy or irregular periods, infertility, even into something that she
Speaker 1: was doing with her mind. It's all in your head.
Speaker 1: This probably sounds familiar to many people listening today who
Speaker 1: have maybe been told something similar by a doctor they
Speaker 1: thought they could trust to listen. Because despite how this
Speaker 1: story is sometimes told, hysteria didn't disappear after Freud. It
Speaker 1: may have fallen out of fashion and lost credibility as
Speaker 1: a medical diagnosis a bit. But number one, it wasn't
Speaker 1: actually removed from the DSM, the Diagnostic and Statistical Manual
Speaker 1: of Mental Disorders until nineteen eighty and number two, it
Speaker 1: never really went away, but was rather repackaged. Out of
Speaker 1: this umbrella term hysteria came endometriosis MS, chronic pelvic pain,
Speaker 1: many autoimmune diseases, samatitization, psychogenic illness, medically unexplained symptoms, so
Speaker 1: many things. Freud's transformation of hysteria into a psychological disorder
Speaker 1: turned women into unreliable sources on their own body. Essentially,
Speaker 1: a woman is thought to be lying about her symptoms
Speaker 1: unless there is observable proof to the contrary, or her
Speaker 1: symptoms are real but psychogenic unless you can prove otherwise.
Speaker 1: A gynecology textbook from nineteen seventy one said that quote
Speaker 1: many women wittingly or unwittingly exaggerate the severity of their
Speaker 1: complaints to gratify neurotic desires end quote, and in the
Speaker 1: same textbook that morning sickness quote may indicate resentment, ambivalence,
Speaker 1: and inadequacy in women ill prepared for motherhood. Oh as
Speaker 1: if you needed more things to get angry about.
Speaker 2: Right, and I can't rage in front of the microphone.
Speaker 1: It's it all explains so much about today and how
Speaker 1: women are treated. Women began being seen as mentally ill
Speaker 1: rather than physically sick, and throughout the twentieth century the
Speaker 1: rate of psychogenic illness diagnoses increased enormously. If you were
Speaker 1: experiencing pain and complained too little, you weren't taken seriously
Speaker 1: because you weren't experiencing enough pain. But if you complained
Speaker 1: too much, you were labeled as an exaggerator, as dramatic,
Speaker 1: as crazy. One proponent of psychogenic diagnoses says that quote
Speaker 1: the vehemence with which many patients insist their illness is
Speaker 1: medical rather than psychiatric, has become one of the hallmarks
Speaker 1: of the conditions. So like, the more you say no,
Speaker 1: this is a real pain, the more likely you are
Speaker 1: to be diagnosed with the psychogenic illness.
Speaker 2: Yeah, yeah, what.
Speaker 1: There are scientific studies backing up these implicit gender biases
Speaker 1: in medicine, and it's not just male doctors that are
Speaker 1: mistreating women. Women, on average are more likely to report
Speaker 1: pain and less likely to receive pain treatment. This is
Speaker 1: not just a gendered issue, of course, but a racial
Speaker 1: one as well, with people of color incredibly undertreated for pain.
Speaker 1: One study showed that after undergoing a coronary artery bypass graft.
Speaker 2: Oh my gosh, I hate this study.
Speaker 1: Uh huh, men were more likely to receive painkillers, while
Speaker 1: women were more likely to receive sedatives. A study from
Speaker 1: two thousand and six by Kiera Monte at All found
Speaker 1: that when med students and residents were presented with the
Speaker 1: description of a patient experiencing symptoms, they initially diagnosed these
Speaker 1: patients similarly, regardless if the patient was described as male
Speaker 1: or female, but if a stressful life event was added
Speaker 1: to the description quote, only fifteen percent of medical students
Speaker 1: or residents diagnosed heart disease in the woman, compared to
Speaker 1: fifty six percent for the man, and only thirty percent
Speaker 1: referred the woman to a cardiologist compared to sixty two
Speaker 1: percent for the man. That quotes from pain and prejudice,
Speaker 1: the explanation given for the woman's symptoms turned from biological
Speaker 1: to psychological, and there was no difference in the results
Speaker 1: based on the gender of the doctors. It seems that
Speaker 1: too often, when physicians meet with the patient, they see
Speaker 1: the diagnosis in the identity of the patient, based on
Speaker 1: implicit biases built into the medical training system. If you're
Speaker 1: a woman, it's in your head or your uterus. If
Speaker 1: you're a black person, you're drug seeking. If you're trans
Speaker 1: and you're on hormone therapy, it's because of the hormones.
Speaker 1: If you're fat, it's because you need to lose weight.
Speaker 1: If you've ever been diagnosed with anxiety or depression, clearly
Speaker 1: that's what's causing your pelvic pain or your chronic fatigue.
Speaker 1: It's rarely that endometriosis could be a source of anxiety
Speaker 1: or depression right Instead, it's depression causing your pelvic pain.
Speaker 1: Take this anecdote paraphrased from doing harm. There was an
Speaker 1: eleven year old girl who had severe abdominal pain and nausea.
Speaker 1: She went to the er. The doctor told her it
Speaker 1: was menstrual cramps, despite the fact that she had not
Speaker 1: yet gotten her period. Ever, the pain didn't go away,
Speaker 1: so the next day, in agony, she had to be
Speaker 1: rushed back to the er. And at this point her mom,
Speaker 1: who was a physician, demanded an ultrasound, and they found
Speaker 1: the largest unruptured appendix that the surgeon had ever removed.
Speaker 1: Would that have happened if it had been eleven year
Speaker 1: old boy instead of an eleven year old girl?
Speaker 2: No, probably not.
Speaker 1: Did the doctor even ask have you ever had your
Speaker 1: period before? Does this feel like period crabs?
Speaker 3: Like?
Speaker 1: Are period crabs so bad that you should go to
Speaker 1: the er?
Speaker 2: No? They shouldn't be, right, Like, if.
Speaker 1: They are that bad and you're in the er, you're
Speaker 1: there for a good reason. Yeah, you're not just they're
Speaker 1: not just oh well, you know, deal with it, Take
Speaker 1: some ibuprofen and go home. And that's with an observable,
Speaker 1: detectable condition, right like you could look to find the
Speaker 1: unruptured appendix. Women who seek medical care for a condition
Speaker 1: that's not objectively observable or measurable or easily measurable. And
Speaker 1: as you went into Aaron boy, we are inadequate at
Speaker 1: describing and measuring pain. I mean absolutely inadequate. These these
Speaker 1: mystery women are often a source of frustration for physicians,
Speaker 1: and they're dismissively called malingerers. Never wells et cetera. Concern
Speaker 1: turns to resentment as nothing seems to work and the
Speaker 1: answer to the problem seems forever out of reach. I
Speaker 1: can't see anything wrong with you, so there must not
Speaker 1: be anything wrong with you. A physician's sense of self
Speaker 1: worth shouldn't be tied up in having an answer or
Speaker 1: the right answer. There's an incredible power in empathy in
Speaker 1: saying I don't know, but let's find out. So where
Speaker 1: does that all leave us with endometriosis. We have come
Speaker 1: a long way since the early days of hysteria and endometriosis,
Speaker 1: and the people who have made the biggest strides in
Speaker 1: raising awareness of endometriosis are patient advocacy groups, people who
Speaker 1: have had to become experts in a disease that their
Speaker 1: own physicians often failed to communicate with them about. But
Speaker 1: we haven't come nearly far enough. Stereotypes about endometriosis have
Speaker 1: persisted long after being disproven, such as endometriosis is rare
Speaker 1: in women of color, or only happens to women who
Speaker 1: put off marriage and childbearing. These stereotypes, combined with the
Speaker 1: outrageous lack of knowledge about how endometriosis actually works and
Speaker 1: the tendency for physicians to dismiss or downplay the pain
Speaker 1: experienced by women. These all contribute to the long, often
Speaker 1: excruciating years people have to wait for a diagnosis, and
Speaker 1: still endometriosis is too often made to be about a
Speaker 1: woman's social or gender role. Endometriosis can absolutely impact a
Speaker 1: person's fertility, and for someone who wants or thinks they
Speaker 1: might want to have children, that's hugely important. But often
Speaker 1: fertility is preserved as a default without asking the patient
Speaker 1: whether or not subfertility or infertility would be acceptable if
Speaker 1: it meant reducing the pain.
Speaker 2: Yeah.
Speaker 1: And a two thousand and three study found that women
Speaker 1: who sought out doctors because of infertility received a diagnosis
Speaker 1: of endometriosis in half the time that women complaining of
Speaker 1: menstrual pain did.
Speaker 2: It's not surprising and infuriating, exactly like infertility matters, but
Speaker 2: it shouldn't have to cause infertility to matter. Yes, that's
Speaker 2: so frustrating.
Speaker 1: Yeah, yeah, And I think a large part of this
Speaker 1: is due to the fact that men instral pain is
Speaker 1: so normalized, it's so accepted, and it's reinforced intergenerationally. Yep, totally,
Speaker 1: It's not viewed as interesting or worthy of research. Despite
Speaker 1: being described for over one hundred years and affecting approximately
Speaker 1: the same number of women as diabetes, end, demitriosis gets
Speaker 1: about five percent of the research funds that diabetes gets.
Speaker 2: I almost use diabetes as my expoint. What did you use,
Speaker 2: I'm going with breast cancer. Oh okay, it's not too far.
Speaker 2: I'm curious.
Speaker 1: Yeah, but periods aren't fit for polite conversation. There's simply
Speaker 1: the price of being a woman, right, No, not true.
Speaker 1: Periods shouldn't be painful. People don't even need to have periods,
Speaker 1: and if there is pain, it should be believed and understood.
Speaker 1: Let's talk more about periods. Let's talk about consistency. Let's
Speaker 1: talk about the number of times you have to empty
Speaker 1: your diva cup or change your pad, or change your
Speaker 1: tamp on brands do like the best? Are there any
Speaker 1: things that you do that you help your period and
Speaker 1: make you feel better? Like all these things so important?
Speaker 2: Ah? Okay, ye say it erin.
Speaker 1: I want to end, finally, after this very long history,
Speaker 1: with a quote from of course again Maya Dusonberry from
Speaker 1: her book Doing Harm. Quote. There is always a gap
Speaker 1: between when a symptom begins and when it is medically explained.
Speaker 1: It is unreasonable to expect that doctors who are fallible
Speaker 1: human beings doing a difficult job can close this gap instantaneously,
Speaker 1: and given that medical knowledge is and probably always will
Speaker 1: be incomplete, they may at times not be able to
Speaker 1: close it at all. But it shouldn't be unreasonable to
Speaker 1: expect that during this period of uncertainty, the benefit of
Speaker 1: the doubt be given to the patient. The default assumption
Speaker 1: be that their symptoms are real, their description of what
Speaker 1: they are feeling in their own bodies be believed, and
Speaker 1: if it is medically unexplained, the burden be on medicine
Speaker 1: to explain it. Such basic trust has been denied to
Speaker 1: women for far too long. End quote. So erin, I
Speaker 1: have a feeling I might just get angrier. But can
Speaker 1: you tell me where we stand with endometrios's today?
Speaker 2: I can try Aaron, Okay, maybe we should take a
Speaker 2: break first, well, last break break. Almost every single paper
Speaker 2: that I read, and I read a lot of papers
Speaker 2: universally cited the statistic that ten percent of women of
Speaker 2: child bearing age have endometriosis. And that's it. That's that's it.
Speaker 2: That's the number that I have.
Speaker 1: Ar Okay, it's and these numbers, like where are these
Speaker 1: papers from? And so would those diagnoses have been based
Speaker 1: on surgical.
Speaker 2: Or yeah, I basically only looked at papers from twenty
Speaker 2: ten and sooner, so like within the last ten years, okay,
Speaker 2: and universally that is what they all said. I have
Speaker 2: found no papers that tried to dig deeper and really
Speaker 2: get it sense of like are these numbers changing, are
Speaker 2: we seeing it more? Et cetera like? And was really
Speaker 2: frustrating is that none of the papers dug down into
Speaker 2: like what what does that actually mean? Because people who
Speaker 2: are not child bearing age can have endometriosis. Lots of
Speaker 2: people with the uterus that aren't women of child bearing
Speaker 2: age can have endometriosis, And so does that ten percent
Speaker 2: actually mean like ten percent of people with a uterus
Speaker 2: have endometriosis? Or is that number higher because people with
Speaker 2: the uterus maybe had entometriosis when they were younger and
Speaker 2: now they're older, the symptoms have gone away, but those
Speaker 2: people still count, right, So I don't have an answer
Speaker 2: for you.
Speaker 1: Right, Or what about people who have endometriolesians and might
Speaker 1: not have symptoms that have led them to go seek
Speaker 1: a diagnosis?
Speaker 3: Right?
Speaker 2: And that's what's so infuriating is that this ten percent
Speaker 2: number assumes that it includes those people. Yeah, and so
Speaker 2: it says that like thirty to fifty percent of those
Speaker 2: ten percent will then have pain from this enometrosis, which, like, uh,
Speaker 2: give me strength, I doubt no. But statistics also cite
Speaker 2: that upwards of sixty percent of women, by which I
Speaker 2: assume what they mean is sixty percent of people with
Speaker 2: a uterus that suffer from chronic pelvic pain have endometriosis
Speaker 2: as the likely cause of this pain. And those statistics,
Speaker 2: both of them, no matter how flawed they are, are
Speaker 2: incredibly high.
Speaker 1: I mean, staggering.
Speaker 2: Ten percent, even if we assume that ten percent of
Speaker 2: people with the uterus is the real number, ten percent
Speaker 2: of people with uterus. Okay, let's compare that, Aaron, you
Speaker 2: mentioned diabetes. Almost used that. But let's talk about breast cancer,
Speaker 2: shall we. Thirteen percent of women in the US will
Speaker 2: develop breast cancer. Thirteen percent. That's really close to ten percent.
Speaker 2: We have a whole month dedicated to breast cancer, don't we.
Speaker 1: We have one for endometriosis too.
Speaker 2: Oh really, but no one's heard of it.
Speaker 1: Yeah that's fair.
Speaker 2: But everybody knows about breast cancer. Everybody knows how important
Speaker 2: breast cancer is. Everybody knows somebody who has survived breast cancer,
Speaker 2: or everyone has lost someone from breast cancer, right, and
Speaker 2: so many people have no idea what endometriosis is, let
Speaker 2: alone care enough to, I don't know, like encourage funding
Speaker 2: of research for it. Uh huh. And I think I
Speaker 2: think this is now my soapbox. This is for a
Speaker 2: lot of reasons that Aaron, you really kind of focused
Speaker 2: on so many of them, and if we really drill
Speaker 2: down to it, like it comes back to the patriarchy,
Speaker 2: as it always does. But at its core it also
Speaker 2: is because I think endometriosis is classified in all of
Speaker 2: the literature as a quote benign condition. What so, endometriosis
Speaker 2: is classified as a quote benign condition.
Speaker 1: And so by this means it doesn't kill you.
Speaker 2: So what this is in contrast to is a malignant
Speaker 2: condition such as cancer, And what that means is, yes,
Speaker 2: in general, a benign condition is not going to kill
Speaker 2: you if left untreated, at least not directly. Cancers which
Speaker 2: are malignant invade and metastasized, that is, they spread in
Speaker 2: a way that, if left untreated, is often fatal. Now
Speaker 2: I can see your face aerin endometriosis is really really
Speaker 2: interesting because it in fact does metastasize. It can metastasize
Speaker 2: in a way right. It can be found well outside
Speaker 2: the peritoneal cavity, and by definition, it is tissue found
Speaker 2: outside where it's supposed to be. And in the case
Speaker 2: of deeply infiltrating endometriosis, it does invade deeper tissues in
Speaker 2: the same way that cancer can. But endometriosis causes pain,
Speaker 2: causes suffering, causes infertility, and that, my friends, is seen
Speaker 2: as benign. It can invade your bowels and cause obstruction,
Speaker 2: but it usually doesn't. That's uncommon. It can invade your
Speaker 2: bladder or your urrots and cause obstruction. It can cause
Speaker 2: destruction of your urrotors, but it doesn't often. And because
Speaker 2: because it's a histologically recognizable tissue type, and because it
Speaker 2: generally quote unquote doesn't invade to the extent that a
Speaker 2: cancer would, and because it generally subsides after menopause, after
Speaker 2: the withdrawal of those hormones, it is quote benign. Okay,
Speaker 2: it's clearly nothing of the sort.
Speaker 1: Obviously, So in non medical language, benign is like not harmful,
Speaker 1: not bad. So is there a different interpretation in metal.
Speaker 1: I'm just trying to give that a little bit of
Speaker 1: the benefit of the doubt, because this is so staggeringly appalling.
Speaker 2: It is it does mean in the medical sense, in
Speaker 2: that it is not a malignant condition.
Speaker 1: But I mean, does the use of the word benign
Speaker 1: in medicine then influence people who are practicing medicine to
Speaker 1: view a condition as benign as in the popular interpretation
Speaker 1: of the term.
Speaker 2: In my opinion, how can it not. Yeah, when we're
Speaker 2: talking about pain, and we've talked so much about how
Speaker 2: difficult pain is to understand, to explain to, and to
Speaker 2: sympathize with, and to empathize with if your pain perception
Speaker 2: is different than someone else's pain perception or pain sensitization, right.
Speaker 2: I also do want to point out that the risk
Speaker 2: of eventual ovarian cancer diagnosis, so cancer the malignant condition,
Speaker 2: in people with long standing endometriosis, is two to threefold
Speaker 2: higher than in people without endometriosis. So even though endometriosis
Speaker 2: itself is not a cancerous condition, it's not without its risks. Yeah, right,
Speaker 2: I mean, so far as that goes Ah, isn't that
Speaker 2: just fascinating?
Speaker 1: Though?
Speaker 2: So I found that to be a very sort of
Speaker 2: problematic what I think is likely a big contributor to
Speaker 2: why endometriosis kind of has maybe the rap that it
Speaker 2: has right, just this classification of it with and it's
Speaker 2: medically I actually found one paper that was kind of like,
Speaker 2: is it correct to call it a benign or is
Speaker 2: it not in terms of the medical definition of the
Speaker 2: term benign? Okay, because it does behave in ways that
Speaker 2: benign tissue doesn't, and yet it doesn't behave the way
Speaker 2: that a cancer does, and it doesn't fit the definition
Speaker 2: of a cancer. There have been a number of new
Speaker 2: mutations identified in endometrial tissue that are associated with cancer,
Speaker 2: but never enough of them, like only one mutation instead
Speaker 2: of three mutations that would then cause it to be
Speaker 2: a cancer. So it is not a cancer and it
Speaker 2: does not metastasize the way that a cancer does. But
Speaker 2: it's not normal tissue either. So it's an interesting disease
Speaker 2: in that respect, and we have a long way to
Speaker 2: go to understanding it. I was thinking this and feeling this,
Speaker 2: and then I went for a walk today and I
Speaker 2: was listening to an episode of Vox's podcast Unexplainable, and
Speaker 2: they have an episode on endometriosis. It's really great. It
Speaker 2: has stories from like fourteen people who have been living
Speaker 2: with endometriosis. I recommend the listen. But they also had
Speaker 2: an interview with someone who researches endometriosis. It's doctor Lisa Griffiths.
Speaker 2: She is at MIT and runs the Center for Gynopathology Research.
Speaker 2: Her research is super fascinating. Its focuses on tissue engineering,
Speaker 2: like growing endometrial ti issue on like chips, and they're
Speaker 2: trying to develop better diagnostic markers that can be used
Speaker 2: to not only diagnose, but then also classify endometriosis into
Speaker 2: different subtypes, which could then theoretically lead to more personalized
Speaker 2: or targeted treatment options, which is amazing. But she also
Speaker 2: brought up this exact same thing that like the language
Speaker 2: that we use surrounding endometriosis is so important, and she
Speaker 2: was saying that, like her collaborators kept calling it a
Speaker 2: benign condition, benign condition, and she was like, I live
Speaker 2: with this, she has endometriosis. She's like, there's nothing benign
Speaker 2: about it. Yeah, right, But it's that difference between quote
Speaker 2: medical language and colloquial language, right, But it matters, right,
Speaker 2: and it influences we are all humans, even in the
Speaker 2: medical community. It influences the way that we perceive it
Speaker 2: and then the way that we treat people who are
Speaker 2: living with it. There are a lot of people doing
Speaker 2: research on endometriosis from so many different angles because there's
Speaker 2: so much that we don't know. So I already mentioned
Speaker 2: some fascinating research by the Center for Gaynopathology Research. There's
Speaker 2: also other groups like Citizen Endo, which is led by
Speaker 2: doctor Noemi Elhadad at Columbia University and their team. Super
Speaker 2: fascinating are using like citizen science y based tools to
Speaker 2: try and better characterize the symptoms of endometriosis, to try
Speaker 2: and bridge the gaps between what clinicians know or think
Speaker 2: they know or think about endometriosis and how people who
Speaker 2: are living with it actually experience endometriosis, which I love
Speaker 2: so much.
Speaker 1: I know, I love I love that project so much.
Speaker 2: It's so cool, I think, honestly, in so many ways,
Speaker 2: we're still at the phase. I think we've talked about
Speaker 2: this in a number of different episodes arin but we're
Speaker 2: at the phase in endometriosis right now where we still
Speaker 2: are trying to just like garner awareness about this condition. Yeah,
Speaker 2: you know, so I have a feeling after this episode
Speaker 2: maybe a lot of our listeners are going to be
Speaker 2: going to their doctor's offices, Like, so, can I ask
Speaker 2: you about endometriosis?
Speaker 1: So I shouldn't be laying in bed all day and
Speaker 1: not able to go to work because of my period.
Speaker 2: Yeah, I mean I didn't even get into like the
Speaker 2: statistics on the number of missed school days, the number
Speaker 2: of missed work days, like the economic EXPINI is in
Speaker 2: the billions of dollars every year. Yeah, so that is
Speaker 2: endometriosis there, It is sources, sources.
Speaker 1: I mentioned. I have some papers, but uh I mentioned
Speaker 1: the four books that I read all great, love them,
Speaker 1: And if you do want to know more about like
Speaker 1: the medical history of endometriosis, who found it? Who made
Speaker 1: this development? And that development sort of the argument over
Speaker 1: who was the first one to describe it? There is
Speaker 1: a very extensive I'm talking like fifth over fifty pages
Speaker 1: paper by neshat at All from twenty twelve that goes
Speaker 1: into all of that. Found that very interesting and in
Speaker 1: terms of the evolutionary biology, those papers that I mentioned
Speaker 1: are both by Dinsdale at All from twenty twenty one.
Speaker 2: I had a number of papers I already said the
Speaker 2: title of one, the epidemiology of endometriosis is poorly understood
Speaker 2: now is poorly known as the pathophysiology and diagnosis are unclear.
Speaker 2: That was from Best Practice and Research Clinical of Stetrics
Speaker 2: and Gynecology from twenty twenty one. There was a number
Speaker 2: of other really interesting papers that dig deeper into what
Speaker 2: we know about the mechanisms of endometriosis. I think my
Speaker 2: favorite one was from Nature Reviews Endochronology in twenty nineteen,
Speaker 2: as well as another one in the Annual Review of
Speaker 2: Pathology mechan of Disease from twenty twenty. We'll post all
Speaker 2: of these sources from this episode and every one of
Speaker 2: our now eighty eight.
Speaker 1: Episodes eighty eight normal season episode right.
Speaker 2: Not including COVID on our website This podcast will kill
Speaker 2: You dot Com.
Speaker 1: We will thank you again so much, Susie for sharing
Speaker 1: your story with us. I love chatting with you, and yeah,
Speaker 1: we just really appreciate it.
Speaker 2: Yeah, thank you. Thank you also to Blowdmobile for providing
Speaker 2: the music for this episode and all of our one
Speaker 2: hundred plus episodes.
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Speaker 2: And thank you to you listeners. We make this podcast
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Speaker 2: I hope you learned something new.
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