Speaker 1: Hi. My name is Susie sol Aviv.
Speaker 2: From a pretty young age, I taught myself not to
Speaker 2: pay a lot of attention to my body. When I
Speaker 2: was younger, I didn't really have any issues, but after puberty,
Speaker 2: I started to have pretty bad cramps. I had to
Speaker 2: go to the bathroom fairly often, and I also found
Speaker 2: out that I was anemic, and I would occasionally, if
Speaker 2: I was exercising too hard.
Speaker 1: Start to black out.
Speaker 2: Nobody really had a good explanation for this, and nobody
Speaker 2: really directed me to a doctor or anything. So I
Speaker 2: just ignored it and moved forward. Lots of other people
Speaker 2: in my high school had period cramps, Plenty of people
Speaker 2: were going on birth control to try to control the cramps,
Speaker 2: and you know, it was easy enough for me to
Speaker 2: get past it was a little bit of ibuprofen. I
Speaker 2: was also raised very religious, and I'm still quite religious,
Speaker 2: and unfortunately, some American puriody culture crept into my upbringing,
Speaker 2: and so I didn't spend a lot of time thinking about,
Speaker 2: for lack of a better word, my reproductive parts.
Speaker 1: Spent a lot of.
Speaker 2: Time ignoring them, spent a lot of time pretending nothing
Speaker 2: was really going on, and generally being embarrassed about it,
Speaker 2: so I got good at disassociating from those parts of
Speaker 2: my body. After I got married, I ended up having
Speaker 2: extremely painful sex, and I assumed that it was related
Speaker 2: to purity culture, and I assumed it was psychological. I
Speaker 2: talked to my PCP about it. I think I got
Speaker 2: a referral to pelvic floor therapy at one point, but
Speaker 2: nobody was really concerned, and again I just decided that
Speaker 2: it wasn't a very big deal. It was just something
Speaker 2: that was in my head and I was able to
Speaker 2: move past it. In our first year of marriage, I
Speaker 2: got pregnant unexpectedly and had no problems with the pregnancy
Speaker 2: except that it was I was very nauseous through the
Speaker 2: entire thing. I was in a lot of pain, and
Speaker 2: then when I had to have cervical checks, I was
Speaker 2: in tremendous amount of pain. Again, I told them that
Speaker 2: I thought this was due to growing up with a
Speaker 2: certain amount of purity culture and that it was psychological,
Speaker 2: and nobody questioned it. So after I had my daughter,
Speaker 2: eventually my period returned and I started having worse and
Speaker 2: worse cramps. But everybody tells you that after you have
Speaker 2: a baby, your periods get worse. That's just what people
Speaker 2: tell you, and so once again I chose to disassociate
Speaker 2: from it and ignore it. Some of the painful sex
Speaker 2: symptoms subsided, others remained. Mostly I was just proceeding with
Speaker 2: business as usual. Last year, I started having cramps so
Speaker 2: bad that I would have bladder spasms, which means that
Speaker 2: I would literally be my pants with no control. It
Speaker 2: only happened a few times, thank goodness, but I also
Speaker 2: ended up starting to have to lie down when I
Speaker 2: had my cramps, and I was surprised that it wasn't great,
Speaker 2: but I could generally manage it with like three to
Speaker 2: four ibuprofen and heat pack. But by the fall, things
Speaker 2: had escalated and the ibuprofen wasn't cutting it, and the
Speaker 2: heat pack wasn't cutting it, but the killer was. When
Speaker 2: I noticed that there was blood in my stool, I
Speaker 2: didn't really want to do anything about it, but by January,
Speaker 2: my sister told me that I had to do something
Speaker 2: about it, so I went into urgent care. They took
Speaker 2: some samples and told me that I needed a colonoscopy
Speaker 2: and that I should not have any ibuprofen until after
Speaker 2: I had the colonoscopy. Then on my thirty fifth birthday,
Speaker 2: I spent the entire day in agony and the worst
Speaker 2: pain I've ever had because I was experiencing my cramps
Speaker 2: without any sort of pain blocker. I went in for
Speaker 2: a colonoscopy at the beginning of March, and I didn't
Speaker 2: expect them to find much of anything, because again I
Speaker 2: didn't really believe that I had any problems, and I
Speaker 2: thought to myself, the only problem that I could really
Speaker 2: have is cancer, because cancer runs rampant in my family.
Speaker 1: Both my father and my.
Speaker 2: Brother died of fairly rare cancers, my father of uvial
Speaker 2: melanoma and my brother of colanngiocarsonoma. So I was a
Speaker 2: little anxious about the kolonoscopy, but not overly so. When
Speaker 2: I woke up from the colonoscopy, the doctor went to
Speaker 2: get my husband and took me to his office and
Speaker 2: sat me down and told me that he had found
Speaker 2: something and it was very likely to be cancer. So
Speaker 2: this was incredibly traumatic for me because I was immediately
Speaker 2: convinced I was going to die. I also delivered the
Speaker 2: news to my family and told basically everyone I know,
Speaker 2: because I decided that if I did indeed have cancer.
Speaker 2: I wanted everybody to start praying as quickly as possible,
Speaker 2: and I maintained that it worked, because a week later,
Speaker 2: the same doctor called me back and told me that
Speaker 2: the cell simples, to his great shock, had come back
Speaker 2: not as cancer but as endometrisis. I literally fell to.
Speaker 1: My knees on the ground.
Speaker 2: I changed doctors, so I went in for a second opinion.
Speaker 2: I had another, not another klonoscopy, but a flexible sigmoidoscopy,
Speaker 2: and the doctor told me he thought that I had
Speaker 2: endometriosis and maybe cancer, and I was referred to the
Speaker 2: gynecological oncology department. I went in and met with one
Speaker 2: of the directors of the GUYNANC department, who told me
Speaker 2: that she thought, yes, there's a possibility of cancer, but
Speaker 2: mostly it was horrible endometriosis. So she showed me the
Speaker 2: images that they had taken of my body in the
Speaker 2: MRI and everything, and you could see that there was
Speaker 2: something growing out of my left ovary into my colon,
Speaker 2: and we knew that it was probably in other places.
Speaker 2: But there is no way to confirm endometriosis except by surgery,
Speaker 2: so they could not confirm, and they thought there was
Speaker 2: a possibility that there was still cancer. So the other
Speaker 2: thing that the guynok told me was that she thought
Speaker 2: I was going to have to have a complete hysterectomy
Speaker 2: and eupherectomy. I had been trying for a second child
Speaker 2: at this point for almost a year and this was devastating.
Speaker 2: But because there was a chance of cancer, I was like,
Speaker 2: just take it all.
Speaker 1: I don't want it. Get rid of it.
Speaker 2: So I had a period farewell party with my friends
Speaker 2: over Zoom. We drank cranberry juice.
Speaker 1: We toasted.
Speaker 2: I wrote a letter to Aunt Flow, sending her out
Speaker 2: into the worlds, and my surgery was scheduled for May fourth.
Speaker 2: My last period was one of the worst pains I've
Speaker 2: ever had in my life. The ibuprofen didn't ease it,
Speaker 2: the heat didn't ease it. I was just lying in
Speaker 2: bed for two days and was more or less silent screaming.
Speaker 1: It was horrific.
Speaker 2: I had surgery. They confirmed stage four endometriosis. I discussed
Speaker 2: with my surgeon that I wanted to try to keep
Speaker 2: my right ovary if possible, because I didn't want to
Speaker 2: go into surgical menopause.
Speaker 1: At thirty five.
Speaker 2: There are a lot of issues associated with going into
Speaker 2: menopause early, and I wanted to avoid them if I
Speaker 2: could also have I struggle with my mental health. I
Speaker 2: have depression anxiety, and I knew that the severe hormonal
Speaker 2: shift would be very difficult. Although there was less than
Speaker 2: a five percent chance that they could save my ovary,
Speaker 2: the surgeon was able to do it. There is still
Speaker 2: an insignificant amount of endometriosis on my right ovary, It's
Speaker 2: less than one centimeter, but they were able to remove
Speaker 2: fourteen point five centimeters of.
Speaker 3: Colon, which is about the size of sharp.
Speaker 2: B, a six centimeter rectovaginal septum tumor which is about
Speaker 2: the size of an egg, and a seven centimeter left
Speaker 2: ovarian tumor, which is about the size of peach.
Speaker 1: And the left ovary.
Speaker 2: I woke up to the very happy news that I
Speaker 2: still had an ovary, which I did not expect, and
Speaker 2: about a week later I got the even happier news
Speaker 2: that there wasn't cancer, it was just ha nometriosis. So
Speaker 2: after the surgery, it took me about three months to
Speaker 2: feel normal again. The biggest shift since the surgery is
Speaker 2: that I've had to relearn my body. I have to
Speaker 2: relearn what feels good and bad, what's painful and what's not,
Speaker 2: because I just disassociated from it so much that I
Speaker 2: had no idea that I was in pain. The emotionally
Speaker 2: challenging part of this, aside from thinking that I was
Speaker 2: going to die of cancer for a fairly significant amount
Speaker 2: of time, was that there's almost no chance of me
Speaker 2: ever having another biological child, and so I've had to
Speaker 2: give up on that particular dream because the hope was
Speaker 2: just too much. But we got a puppy, and so
Speaker 2: that's my replacement baby. I have also learned to be
Speaker 2: a lot kinder to myself and to trust my body more.
Speaker 2: I accept now that I am living with a chronic illness.
Speaker 2: I try to take naps a lot, I try to
Speaker 2: listen to what feels good and what feels bad. But
Speaker 2: when I stopped to really think about it, the thing
Speaker 2: that really makes me angry is that I had no
Speaker 2: idea I had endometriosis before any of this started. It
Speaker 2: is absurd that no one thought of endometriosis, that I
Speaker 2: was never presented with any education about endometriosis, that no
Speaker 2: one in my friend's circle ever talked about endometriosis, even
Speaker 2: though I found out more and more people have it,
Speaker 2: and I just feel like I know so little. In
Speaker 2: a post I wrote on Reddit, i wrote, I've been
Speaker 2: a feminist for my entire life without understanding that I've
Speaker 2: been trapped in a patriarchal pain and trap. So thank
Speaker 2: you for listening to my story.
Speaker 3: Thank you so much Susie for taking the time and
Speaker 3: being willing to share your story. It was, oh my gosh,
Speaker 3: I mean yeah.
Speaker 1: I can't wow. Thank you.
Speaker 3: Yeah.
Speaker 1: Hi, I'm erin Welsh and I'm Aaron Allman Updyke.
Speaker 3: And this is this podcast We'll kill you.
Speaker 1: It's uh, it's going to be a big episode, Darin.
Speaker 3: This is certainly my longest notes like by I think
Speaker 3: like kind of a bit so just yeah, I really
Speaker 3: kind of it got away from me. But I'm excited
Speaker 3: about it.
Speaker 1: I am too. I have like a lot of feelings
Speaker 1: about it. So it's going to be a good one.
Speaker 3: Yeah, And what exactly is going to be a good one?
Speaker 1: Oh? Yeah, that's right. Today we're covering endometriosis.
Speaker 3: That's right, what even is endometriosis? At the end of
Speaker 3: this episode, will we have a satisfactory answer to that question?
Speaker 1: I think we'll have like, at least most of a
Speaker 1: satisfactory answer will have a clinical definition.
Speaker 3: That's true, that's true. Where does that leave us? I
Speaker 3: guess we'll find out before we get into the nitty
Speaker 3: gritty of all of that, though, Should we do quarantini?
Speaker 1: We really should?
Speaker 3: What are we drinking this week?
Speaker 1: We're drinking the chocolate cyst? Of course? Oh boy, honestly,
Speaker 1: that's I think that's a grosser name than our diabetes
Speaker 1: one sweet pea. Yeah, I think this is grosser.
Speaker 3: Is it grosser than our MRSA one?
Speaker 1: Mm? No, maah, maybe I don't know. You tell us listeners,
Speaker 1: You tell us listeners.
Speaker 3: What's the grossest one? Yet? So why are we calling
Speaker 3: it the chocolate cyst?
Speaker 4: Though?
Speaker 3: Yeah?
Speaker 1: Okay, so a chocolate cyst is like one of the
Speaker 1: descriptors for an endometrioma, which is when you get endometriosis
Speaker 1: on your ovary. We're gonna get into all of it,
Speaker 1: but basically, sometimes you get these things look like a
Speaker 1: little chocolate truffle liquid.
Speaker 3: Eir Okay, Well, definitely garnish this with a chocolate truffle
Speaker 3: if you can.
Speaker 1: So what's in the chocolate system.
Speaker 3: Chocolate liquour, banana, liqueur, coffee, liquour and cream and then
Speaker 3: of course garnish, like I said, with a chocolate truffle.
Speaker 3: And also the placy Burita is just probably going to
Speaker 3: be the most decadent, delicious chocolate milkshake you've ever had.
Speaker 3: Chocolate banana milkshake.
Speaker 1: Yeah, and you.
Speaker 3: Can find our recipe for our quarantini as well as
Speaker 3: our non alcoholic Placyburta on our website. This podcast will
Speaker 3: kill You dot com and we'll also post it to
Speaker 3: all of our social media channels.
Speaker 1: On our website, This podcast will kill You dot com.
Speaker 1: You will find everything that you could want to find.
Speaker 1: We have merch we have links to Bloodmobile, who provides
Speaker 1: the music for this podcast. We have transcripts of all
Speaker 1: of our episodes now, which is thrilling. We've got a
Speaker 1: bookshop dot org affiliate account. We've got a good Reads list,
Speaker 1: we have a link to our Patreon. We have It's
Speaker 1: all there, It's all there, It's all there, and more.
Speaker 1: With that, Aaron, should we just get into the endometrium
Speaker 1: of this episode?
Speaker 3: Erin, yes, yes, please please. Let's take a quick break first.
Speaker 1: I can kind of sum up this whole episode with
Speaker 1: one of the more recent papers that I found. It's
Speaker 1: the title of a paper from twenty twenty one and
Speaker 1: the title is simply, the epidemiology of endometriosis is poorly
Speaker 1: known as the pathophysiology and diagnosis are unclear.
Speaker 3: And wow, that's the title.
Speaker 1: I know that's the title.
Speaker 3: Man.
Speaker 1: Yeah, it's uh yeah, We're off to a really good start.
Speaker 3: Strong yep, spoilers, I feel like, yes, we're in that title.
Speaker 1: Okay, So endometriosis. I know there's probably a good subset
Speaker 1: of our listenership who has never heard of this. And
Speaker 1: I am going to get to the official definition really soon,
Speaker 1: I promise, but some little lead in. Okay. Endometriosis is
Speaker 1: almost always described as a disease of women of child
Speaker 1: bearing age. That is how it is described. It's a
Speaker 1: problem straight off the bat because this description ignores number one,
Speaker 1: anyone who is trans or non binary that has a
Speaker 1: uterus or has endometriosis. Number two. It ignores the fact
Speaker 1: that endometriosis, pain, and endometriosis itself can persist or even
Speaker 1: sometimes arise after menopause aka after quote child bearing. Number three.
Speaker 1: It also ignores the fact that cases of endometriosis, though
Speaker 1: very rare, have occurred in people assigned male at birth,
Speaker 1: which means that a uterus isn't necessarily a prerequisite for
Speaker 1: the disease. And finally, and I think most importantly, I
Speaker 1: don't know they're all important, but by designing this disease
Speaker 1: to this particular group, quote, women of child bearing age
Speaker 1: and Aaron, I know you're going to talk a lot
Speaker 1: more about this.
Speaker 3: Oh yeah, yeah, so I thought, is it's also been
Speaker 3: found in infants.
Speaker 1: Oh that's a good point. Yeah, it can definitely be
Speaker 1: in before child bearing age as well.
Speaker 3: Everyone can get very trios.
Speaker 1: But by designating it as the disease of women of
Speaker 1: childbearing age, it makes it really really easy in our
Speaker 1: society to dismiss it as a condition for oh, young
Speaker 1: women just have poor pain tolerance, or oh this is
Speaker 1: a women's problem, or even worse, as a normal part
Speaker 1: of young womanhood. Spoiler alert, it is none of those things.
Speaker 3: I'm going to be talking so much about this aspect
Speaker 3: of it.
Speaker 1: It's I can't wait. I'm gonna I'm gonna try and
Speaker 1: just hit us all with the little that we do
Speaker 1: know about the biology. So let's actually define the topic
Speaker 1: of today's episode, shall we? Mm hmm? Okay, So the
Speaker 1: technical definition of endometriosis is simply the finding of endometrial
Speaker 1: glands and stroma, which just means endometrial like tissue outside
Speaker 1: of the uterus. So what does that mean. Yeah, to
Speaker 1: talk about that, I want to first talk about my
Speaker 1: personal favorite organ, the uterus. That's my favorite one. Do
Speaker 1: you have a favorite organ?
Speaker 3: I've never thought about it.
Speaker 1: It's a uterus.
Speaker 3: No, I don't. I don't think I would need I
Speaker 3: would need more time.
Speaker 1: Okay, that's fine. Okay, So we talked I think a
Speaker 1: fair bit about the uterus in our birth control episode
Speaker 1: because we talked about the whole menstrual cycle. So I'm
Speaker 1: just gonna briefly recap. The uterus is an organ that's
Speaker 1: made up of a muscular wall, the myometrium, and an
Speaker 1: inner layer, the end endometrium, that's composed of glandular cells.
Speaker 1: So there are these cells that basically form into little
Speaker 1: glands as well as stroma or like support cells is
Speaker 1: how you can think of them. That surround these glandular
Speaker 1: cells and this endometrium, This inner lining of the uterus
Speaker 1: is constantly in flux. This lining is what responds to
Speaker 1: and changes with the influence of cyclic variation in our
Speaker 1: hormone levels, most specifically estrogen and progesterone. This is the
Speaker 1: menstrual cycle that we went over in our birth control episode,
Speaker 1: which was now a couple of years ago. To recap it,
Speaker 1: under the influence of an increase in estrogen, oocytes in
Speaker 1: the ovaries begin to mature, and the uterus lining the
Speaker 1: endometrium proliferates. It grows in number, these stromo cells and
Speaker 1: these glandular cells, and this is known as the follicular
Speaker 1: phase or the proliferative phase, where this lining is growing
Speaker 1: and the endometril lining is becoming thicker in preparation for
Speaker 1: the potential implantation of a blastocyst. Then that peak of
Speaker 1: estrogen prompts a surge of another hormone that causes the
Speaker 1: release of an egg aka ovulation. And then as that
Speaker 1: surge of estrogen declines, progesterone, another hormone, begins to increase
Speaker 1: and the uterus the endometrium enters what's known as the
Speaker 1: secretary phase, where these glands thicken and the arteries within
Speaker 1: their widen and proliferate in number, and the endometrium undergoes
Speaker 1: this process further preparing it for receiving a blasticist and
Speaker 1: then without anything that implants, fourteen days go by and
Speaker 1: progesterone levels sharply decline, and this withdrawal leads to the
Speaker 1: separation of all these cells from their basal layer and
Speaker 1: they slough off, aka menstruation. All of that endometrial tissue
Speaker 1: then exits through the cervix, which is the opening of
Speaker 1: the uterus through the vagina, and that is menstruation, right, yep, right, okay.
Speaker 1: So if that all is the menstrual cycle, and that's
Speaker 1: what's happening inside of a uterus during that menstrual cycle,
Speaker 1: then what is endometriosis If it's the finding of these
Speaker 1: same type of cells that are found inside of a uterus,
Speaker 1: these endometrial, glandular and stromal cells, but now they are
Speaker 1: implanted in tissue outside of the uterus. So instead of
Speaker 1: being inside the lining of this muscular organ, it's outside
Speaker 1: on the wall of the organ, or on the wall
Speaker 1: of your belly, which is called the peritoneum, the inside
Speaker 1: wall of your abdomen. It could even be on your
Speaker 1: bladder or in your Philippian tubes, or on your ovary,
Speaker 1: or on your rectum. It could be anywhere literally in
Speaker 1: your body. So then the question is how does this
Speaker 1: become a disease or a problem, Like, why is it
Speaker 1: a problem to have this tissue outside of the uterus. Well,
Speaker 1: this tissue is still active. It's hormonally sensitive endometrial cells
Speaker 1: that are undergoing the same proliferative and secretary and then
Speaker 1: degeneration that happens within the uterus and would end in
Speaker 1: mensies leaving the body through the vagina, but it's happening
Speaker 1: in an abnormal location and therefore leading to not only
Speaker 1: abnormal responses in our body and massive amounts of inflammation,
Speaker 1: but it's also then not able to leave the body,
Speaker 1: so this inflammation still contained within the body. That leads
Speaker 1: to tissue damage, which can then lead to scarring and fibrosis,
Speaker 1: which leads to the symptoms of endometriosis, which are chiefly pain,
Speaker 1: which doesn't begin to describe adequately like the true symptoms,
Speaker 1: and also infertility or difficulty conceiving or sustaining a pregnancy.
Speaker 1: So that was a lot, like all in a very
Speaker 1: short amount of time. And that's all we know about endometris'.
Speaker 1: Is just kidding, We know like a tiny bit more
Speaker 1: than that. Yeah, So that explanation left a lot of
Speaker 1: open ended questions, and I think the first one that
Speaker 1: I would like to be able to answer is how
Speaker 1: how does this endometrial tissue end up in a place
Speaker 1: where endometrium shouldn't be tissue types in our body, like
Speaker 1: different cell types are actually pretty tightly regulated. So like,
Speaker 1: the tissue that makes up our lining of our abdomen
Speaker 1: is different than the tissue that makes up the lining
Speaker 1: of your uterus, which is different than the tissue that
Speaker 1: makes up your heart or your blood vessels, et cetera.
Speaker 3: Right, Right, And so then because it's so tightly regulated,
Speaker 3: shouldn't your body recognize that, like, hey, this isn't necessarily
Speaker 3: in the right spot it.
Speaker 1: Yeah, And in the case of adometrius, that's part of
Speaker 1: the problem is that your body does recognize it as
Speaker 1: something that's not in the right spot and therefore causes
Speaker 1: a lot of inflammation within it, right, Yeah, And so
Speaker 1: then that leads to part of the problem, or at
Speaker 1: least we think that maybe that's how it's happening. And
Speaker 1: with a lot to do with endometriosis, it's hard to
Speaker 1: know who's the instigator, like which is the cause and
Speaker 1: which is the effect? Right right, But yes, that can
Speaker 1: be part of the problem because our body does recognize
Speaker 1: when a tissue is not in the right place a
Speaker 1: lot of times. But again, this doesn't happen very often
Speaker 1: to have a tissue type in a location in the
Speaker 1: body where it doesn't belong, because in general, as we
Speaker 1: develop from a single cell all the way into our
Speaker 1: multicellular human cells, our cells undergo this process of differentiation
Speaker 1: into all of our specific tissue types in a very
Speaker 1: characteristic pattern during the process of embryogenesis and development. So
Speaker 1: all of our cells have very explicit sets of instructions
Speaker 1: that they follow and explicit influences that they're under in
Speaker 1: order to develop into these different tissue types in certain
Speaker 1: areas and not in others, which is why we don't
Speaker 1: see heart tissue in our bones or brain tissue in
Speaker 1: our guts for the most part. So why on earth
Speaker 1: do we sometimes get endometrial tissue outside of the inside
Speaker 1: of the uterus? And the short answer is, we don't know,
Speaker 1: we don't know, we do not know. Let me go
Speaker 1: through the quote prevailing theories and then maybe erin you
Speaker 1: and I can have some opinions. So the kind of
Speaker 1: what's obnoxiously still called the prevailing theory on how this happens,
Speaker 1: on how endometral glands end up implanting and then replicating
Speaker 1: and proliferating outside our uterus is something called retrograde menstruation
Speaker 1: or what do you call it erin.
Speaker 3: As I've been calling it, menstrual backwash, stral backwash. Could not,
Speaker 3: for the life of me remember retrograde menstruation.
Speaker 1: It's a good visual menstrual backwash. Yeah, essentially, So if
Speaker 1: you've not recently looked at a picture of a uterus,
Speaker 1: let me paint you one. So, the uterus is connected
Speaker 1: to Filippian tubes at the top. They look kind of
Speaker 1: like ears that come off or maybe little arms, and
Speaker 1: these Filippian tubes are open at the end. They have
Speaker 1: these little thimbrae little fingers at the end, and just
Speaker 1: outside of these Filippian tubes is where our ovaries sit.
Speaker 1: So during menstruation, all of the endometril lining and tissue
Speaker 1: comes out through the cervix, which is the base of
Speaker 1: the uterus and also the top of the vaginal canal
Speaker 1: that is the normal flow of menstrual products. But the
Speaker 1: top of the uterus, those Filippian tubes are open at
Speaker 1: the ends. So in fact, there is in many people
Speaker 1: who menstright menstrual product aka endometrial tissue that goes backwards
Speaker 1: and it goes out through those Filippian tubes and enters
Speaker 1: our peritoneal cavity. That's it backwash, backwash, And it was
Speaker 1: thought that this certainly must be the way that endometriosis happens.
Speaker 1: These endometrial tissues are entering our peritoneal cavity. Boom, there
Speaker 1: you go.
Speaker 3: I think there's a really interesting parallel between this like
Speaker 3: wandering endometrial tissue concept and the wandering uterus, the wandering
Speaker 3: ysteria concept.
Speaker 1: Yeah, it's the same, It totally is.
Speaker 3: It's very interesting to me.
Speaker 1: And you know, there is some evidence in support of this,
Speaker 1: because a sizeable portion of endometrial implants occur in areas
Speaker 1: where this menstrual backwash, this retrograde menstruation would end up.
Speaker 1: And in a lot of people where they have looked
Speaker 1: at does this person with endometriosis have retrograde menstruation, they
Speaker 1: have found yes they do, and so there's a correlation there.
Speaker 1: But as it turns out, this is very common and
Speaker 1: happens in at least, if not more than about forty
Speaker 1: percent of people with the uterus who men straight pretty
Speaker 1: much every time they menstraight to varying degrees. So it
Speaker 1: doesn't explain why some people then go on to develop
Speaker 1: endometriosis and others don't. It also doesn't explain how endometriosis
Speaker 1: can happen in people without a uterus to begin with,
Speaker 1: which again is incredibly rare but has happened. And it
Speaker 1: doesn't explain how endometrio cells can end up outside of
Speaker 1: the abdominal cavity entirely, which it can. You can get
Speaker 1: endometriosis in the diaphragm, in the thorax, in the lungs
Speaker 1: uh huh. So this menstrual backwash theory doesn't quite some work,
Speaker 1: need some work, or it just.
Speaker 3: Needs to be discarded for a new one or integrated
Speaker 3: with another passis.
Speaker 1: Yeah, and we'll get there actually, because there's an interesting
Speaker 1: integrative one. So then there is a theory of stem cells,
Speaker 1: of which there are kind of two different schools of thought.
Speaker 1: So stem cells, I think that I might have touched
Speaker 1: on this in the HPV episode. I'm not positive we've
Speaker 1: talked about them before, but anyways, I don't know a
Speaker 1: stem cell is a cell that has the ability to
Speaker 1: differentiate into other cell types. So, like I was saying,
Speaker 1: how when we develop from a single cell into a
Speaker 1: multicellular human, our cells are differentiating. They're becoming like grown
Speaker 1: up quote unquote grown up cells that have a specific
Speaker 1: job and function well. Stem cells are kind of like
Speaker 1: baby cells that have the ability to grow up and
Speaker 1: be any other type of cell or many other types
Speaker 1: of cells. So there's a theory that perhaps bone marrow
Speaker 1: stem cells, which have the ability to differentiate into a
Speaker 1: number of cell types, might somehow find their way into
Speaker 1: the peritoneum or the abdominal cavity, and then there they
Speaker 1: would embed and under certain hormonal influences would differentiate into
Speaker 1: endometrial cells for some reason.
Speaker 3: Huh.
Speaker 1: Yeah, that's one theory. It's not a great one.
Speaker 3: Yeah, I'm like, how does that explain timing of things or.
Speaker 1: Honestly or in it doesn't. Okay, it's not my favorite
Speaker 1: of the theories. So another one that's I think at
Speaker 1: least a little bit more easy to understand is a
Speaker 1: theory that it's endometrial stem cells. Okay, this is coming
Speaker 1: a little bit closer. Oh, and this theory can actually
Speaker 1: kind of tie into the menstrual backwash theory, but adds
Speaker 1: on to it a little bit. So in this case,
Speaker 1: it's not the menstrual backwash per se.
Speaker 3: I love that we're calling it menstrual backwash. Now we've just.
Speaker 1: We're all in. Okay, So it's not the retrograde menstruation
Speaker 1: of just any old endometrial cells, but of specifically endometrial
Speaker 1: stem cells, like the basal cell layers that have the
Speaker 1: ability to differentiate into the different endometrial cell types. If
Speaker 1: those maybe are either backwashed or find their way into
Speaker 1: our bloodstream or our lymphatics, then perhaps those can embed
Speaker 1: and they already have the ability they're programmed to differentiate
Speaker 1: into endometrial cells. So it's logical then that they would
Speaker 1: could be responsive to the same hormonal influences that they
Speaker 1: would if they were still in the inside of the uterus.
Speaker 1: Does that make sense?
Speaker 3: Yeah, that's interesting. And so are there any studies, animal
Speaker 3: studies or something showing support for this or even just
Speaker 3: like tissue culture studies showing support for this.
Speaker 1: There are certainly studies that show that these stem cell
Speaker 1: types exist and can embed and then become you know,
Speaker 1: endometral like tissue.
Speaker 3: Okay, And how then would those stem cells so these
Speaker 3: are like these would be like the deepest basis layer.
Speaker 1: Yes, that's my understanding.
Speaker 3: Okay, so then how do they escape?
Speaker 1: Yea the uterus. That's the question that we don't have
Speaker 1: an answer to. Interesting, there's another theory, and this is
Speaker 1: the sillomic metaplasia theory, which is your celum is the
Speaker 1: inside of your abdomen. So in this theory, regular old
Speaker 1: abdominal cells wherever in your abdomen just undergo metaplasia. Metaplasia
Speaker 1: means they develop mutations and then they change and so
Speaker 1: instead of being a differentiated let's say, abdominal wall cell,
Speaker 1: they dedifferentiate and then redifferentiate into endometrial cells.
Speaker 3: Huh huh.
Speaker 1: So in this theory, instead of like a baby undifferentiated
Speaker 1: stem cell that has the potential to become any cell type,
Speaker 1: you're taking a fully formed adult cell and changing it
Speaker 1: into an endometrial cell.
Speaker 3: Yeah. Yeah, that seems Okay, that seems a little complicated.
Speaker 3: So currently today in we're recording this in twenty twenty one,
Speaker 3: I know that like the prevailing hypothesis is still this
Speaker 3: menstrul backwash thing, But is that, like, what is the
Speaker 3: timeline for these other hypotheses and is there are there
Speaker 3: any of them that are seeking to dethrone so that
Speaker 3: one the thing is.
Speaker 1: Not really okay because the thing is. And here's the
Speaker 1: problem is that none of these theories in and of
Speaker 1: themselves fully or adequately address the question of how exactly
Speaker 1: endometriosis occurs, right, And they also don't answer the question
Speaker 1: of why do some people get endometriosis and other people don't?
Speaker 1: What are the risk factors? And so I think where
Speaker 1: there is more research being done is trying to understand
Speaker 1: the second part of that question, why do some people
Speaker 1: get endometriosis and others don't? Maybe it is one of
Speaker 1: these theories that we already have, Maybe it really is
Speaker 1: menstrual backwash, But it still doesn't answer the question of
Speaker 1: why forty percent of people have menstrual backwash and not
Speaker 1: forty percent of people have endometriosis? Right, right, And part
Speaker 1: of the answer to that question at least seems to
Speaker 1: be genetic. So in a number of genome wide association studies,
Speaker 1: which is when you look at someone's entire genome and
Speaker 1: you try and figure out what's going on, there have
Speaker 1: been I think at least like ten or fifteen different
Speaker 1: gene low size, so different locations that have been shown
Speaker 1: to be associated with endometriosis. So we know that there's
Speaker 1: a strong genetic component, but knowing that there's at least
Speaker 1: ten or fifteen different genes is also maybe not all
Speaker 1: that helpful because it's hard to know what that means. Right.
Speaker 1: It does seem like all of these gene regions are
Speaker 1: in some way related to hormonal regulation in some respect,
Speaker 1: so a lot of this is a hormonally driven disease
Speaker 1: and really an estrogen dependent disease in a lot of ways.
Speaker 1: But really one of the prevailing thoughts is that it
Speaker 1: is this kind of genetic and epigenetic factors combined with
Speaker 1: these unknown environmental insults that leads to endometriosis, and endometriosis
Speaker 1: is associated with a number of other autoimmune disorders, and
Speaker 1: that's kind of the thinking with autoimmune disorders as well. Right,
Speaker 1: It's these genetic predispositions and some kind of environmental influences
Speaker 1: that combine together to then lead to this disease.
Speaker 5: It's not satisfying, but it does make sense in that
Speaker 5: if there's a high level of inflammatory response to this
Speaker 5: self tissue, even like in places it shouldn't be compared
Speaker 5: to people who may not have as high as a strong,
Speaker 5: you know, inflammatory response, and so might not have a
Speaker 5: strong symptoms, or might not have the development of endometrio lesions.
Speaker 3: Or whatever exactly. Then that sort of that kind of
Speaker 3: goes along with it.
Speaker 1: Yeah, especially because while this is if you look at
Speaker 1: endometriosis tissue histologically, like under a microscope, it looks just
Speaker 1: like endometrial tissue. It's histologically it is endometrial tissue, and
Speaker 1: in some ways it does behave in the same way
Speaker 1: as endometrial tissue inside your uterus, right, it proliferates with estrogen,
Speaker 1: it degrades, et cetera. But what's different is that outside
Speaker 1: of the uterus, this endometrial tissue is associated with hugely
Speaker 1: increased amounts of inflammation. And this we do know. So
Speaker 1: we know that local inflammation and immune dysregulation is a
Speaker 1: really big part of the pathogenicity of endometriosis, and this
Speaker 1: inflammation itself is what then leads to the fibrosis, which
Speaker 1: leads to these adhesions, which can lead to such signific
Speaker 1: pain and symptoms. So one way to think of it
Speaker 1: is that it's all related to the bleeding because endometral
Speaker 1: proliferation and then degeneration leads to so much bleeding. The
Speaker 1: bleeding itself, like blood itself, is a very very inflammatory.
Speaker 1: So the fact that it's trapped somewhere inside your body
Speaker 1: rather than traveling through the vaginal canal leads to a
Speaker 1: lot of inflammation, which leads to immune cell infiltration, which
Speaker 1: et cetera, et cetera, all the way down the line.
Speaker 1: But it's also not clear that that's the order in
Speaker 1: which things go. It could be that do you have
Speaker 1: underlying inflammatory changes, differences in the way that your inflammatory
Speaker 1: markers react that then leads to the increased inflammation. Does
Speaker 1: that make sense?
Speaker 3: Yeah, so it's like a chicken in the egg, but
Speaker 3: it's like the chocolate system the inflammation.
Speaker 1: That's exactly right, Aaron. Yeah, so that is what we
Speaker 1: know about the kind of pathogenicity of endometriosis.
Speaker 3: I'm still confused, like it's so yeah, same okay. Questions okay,
Speaker 3: or rather question what do these lesions look like? How
Speaker 3: big do they get, what are the variations in them?
Speaker 3: How do you know when you have one? Et cetera,
Speaker 3: et cetera.
Speaker 1: Yeah. So, typically endometriosis is classified into kind of three
Speaker 1: main subtypes. So there's superficial peritoneal legions, which means these
Speaker 1: little endometrial implants that are primarily within the abdominal cavity,
Speaker 1: either on like the cerrosa, which is the outside lining
Speaker 1: of other organs, or on the walls of your abdominal cavity,
Speaker 1: maybe tucked behind your uterus or up on the front
Speaker 1: anywhere really, but they don't extend deeply into the tissue.
Speaker 1: Use these superficial lesions, and they're generally small. I don't
Speaker 1: have an exact size for you, but they don't extend
Speaker 1: very deeply. That's the first type. Then there are ovarian endometriomas,
Speaker 1: which is where we got the name for our drink.
Speaker 1: This basically just means that the endometriosis has implanted on
Speaker 1: or within the ovary. It's actually thought that it might
Speaker 1: be like where the eggs pop out. If endometrill implants
Speaker 1: find their way in there, they then become enclosed and
Speaker 1: then they form. They can form these really rather large cysts,
Speaker 1: and because they are enclosed within kind of ovarian tissue
Speaker 1: and scar tissue around them, they undergo the same cycles
Speaker 1: of proliferation and degeneration, and within time that blood is
Speaker 1: like contained inside this cyst, and over time that be
Speaker 1: comes a very dark like chocolate color, which is how
Speaker 1: they got the name chocolate cysts.
Speaker 3: It also sounds horribly painful.
Speaker 1: Yes, and they can get very quite large. And then
Speaker 1: the third subtype is deeply infiltrating endometriosis, literally acronymed as dye.
Speaker 1: Mm hmmmm, Like who came up with that?
Speaker 3: Mm hmm, Yeah, it's not great, yep.
Speaker 1: And this deeply infiltrating form, by definition, invades into deeper structures,
Speaker 1: which means instead of just being on the surface of
Speaker 1: say your abdominal wall or on the surface of your bladder,
Speaker 1: it's invading deeper into the muscles of your bladder, into
Speaker 1: the walls of your rectum through your urethra for for
Speaker 1: your urytor for example. God, yeah, it can be horrific,
Speaker 1: and so especially deeply infiltrating endometriosis can cause not only
Speaker 1: incredible pain, but also can then cause damage to and
Speaker 1: blockage of really important structures like your colon or your
Speaker 1: bladder or your urtors.
Speaker 3: So what is the association with these different stages and
Speaker 3: pain intensity or is there any association or with infertility
Speaker 3: or subfertility yeah.
Speaker 1: It's a really good question. There's not a solid answer
Speaker 1: to that. In general, deeply infiltrating lesions are kind of
Speaker 1: the worst as well as endometriomas, especially the ovarian endometriomas
Speaker 1: are also associated with infertility. But the problem is that
Speaker 1: just by looking at somebody's endometriosis, like during a surgery,
Speaker 1: for example, you can't tell how bad their symptoms are
Speaker 1: going to be. So but it looks like doesn't correspond
Speaker 1: very well with actual symptom severity, which can be problematic,
Speaker 1: very problematic. But of course the deeply infiltrating endometriosis has
Speaker 1: the most potential to cause problems in other organs, for example.
Speaker 1: But in terms of pain, which is kind of the
Speaker 1: biggest symptom of endometriosis, any of the types can cause pain,
Speaker 1: or any of the types might not be associated with pain,
Speaker 1: So in that respect, it's difficult. In terms of pain, Aaron, Yeah,
Speaker 1: So pain is classically like the hallmark symptom I guess
Speaker 1: of endometriosis, and most classically it's dysmenorrhea, which is painful periods,
Speaker 1: which sounds like h that doesn't everyone have painful periods?
Speaker 1: This is not so period pain typical period. Pain should
Speaker 1: not be so bad that you are missing school, that
Speaker 1: you are missing work, that you are laid out in
Speaker 1: your bed for an entire week because you can't function
Speaker 1: as a human being. And that's the kind of pain
Speaker 1: that is often associated with endometriosis. You're not able to
Speaker 1: function because of how much pain is associated with it.
Speaker 1: But it's not just with menstruation, especially as these endometrial
Speaker 1: implants sort of just persist over time. It can also
Speaker 1: be dysperunea, which is pain with penetrative sex, which can
Speaker 1: be hugely impactful on somebody's life, pain with defecation, dyskesia,
Speaker 1: painful urination, just pain, pain with everything, pain all the time, chronically. So,
Speaker 1: but here's the thing about pain. I'm probably not going
Speaker 1: to do this justice, but i want to just briefly
Speaker 1: talk about the like neurobiology of pain. If we have time,
Speaker 1: let's do it long episodes.
Speaker 3: This is gonna be a long episode, but you know,
Speaker 3: take a break if you need to come back to it.
Speaker 1: Have a chocolate sista.
Speaker 3: Yeah.
Speaker 1: So, pain at its core, like the definition of pain,
Speaker 1: I guess is when specific receptors no susceptors are activated
Speaker 1: and send signals to our brain, which are then interpreted
Speaker 1: by the brain, processed in certain areas of the brain,
Speaker 1: and then transmitted and we then experience pain. Like that's
Speaker 1: a really general description of it. But there's a few
Speaker 1: things about endometriosis pain, and about chronic pain in general
Speaker 1: that I think are really important to kind of understand. First,
Speaker 1: FIR studies have found that endometriotic implants, this endometriosis in
Speaker 1: your abdomen, often has higher densities of nerve fibers, so
Speaker 1: they're more densely enervated than the surrounding tissue. They're also
Speaker 1: more highly sensitized, so they actually respond at a lower
Speaker 1: threshold of stimuli, which leads to both of those things
Speaker 1: combined lead to an increase in pain signal transmission to
Speaker 1: the brain.
Speaker 3: Yeah, it's just like efficiency in signals traveling. They're like, oh,
Speaker 3: I've gone down this route before, Oh I know how
Speaker 3: to get there, Oh exactly way.
Speaker 1: Really, but also there are literally brain architecture changes that
Speaker 1: happen with chronic pain, right, And this is something that
Speaker 1: we do not fully understand, and people are finally just
Speaker 1: now doing a lot of research.
Speaker 3: On finally just now acknowledging that it might be real right.
Speaker 1: That it's not just psychosomatic, which is what it was
Speaker 1: thought to be for the longest time. But there are
Speaker 1: now a lot of really good studies on this, that
Speaker 1: the brain changes in relation to experiencing chronic pain. And
Speaker 1: while there aren't as many studies on this in relation
Speaker 1: to endometriosis related pain specifically or to pelvic pain specifically,
Speaker 1: there are a few, and the ones that do exist
Speaker 1: that have looked at people, for example, with dysminaria or
Speaker 1: very painful periods. People who have chronic pelvic pain have
Speaker 1: a lower peripheral input at which they experience pain and
Speaker 1: a higher activity higher activation of their central nervous system
Speaker 1: in response to that pain. They are literally primed by
Speaker 1: experiencing chronic pain to then experience more pain.
Speaker 3: Uh huh, And yeah.
Speaker 1: I want to be clear that this is not the
Speaker 1: same thing as saying like, well, you have a low
Speaker 1: pain tolerance, right right, But that's not what this means.
Speaker 1: This means that in response to pain, your body reacts
Speaker 1: and changes and experiences a greater amount of pain from
Speaker 1: the same stimuli as someone else because of these changes
Speaker 1: to your brain.
Speaker 3: It makes complete sense, and it's so frustrating that it's
Speaker 3: frustrating not widely known about, right, understood or taught or researched, right, yep.
Speaker 1: And it's also not saying, like I said, that this
Speaker 1: pain is psychological in origin, because it's not. However, it's
Speaker 1: also really important to point out just how comorbid chronic
Speaker 1: pain conditions like endometriosis and mood disorders like depression and
Speaker 1: anxiety are because this comorbidity. Having these two things together
Speaker 1: leads to further exacerbation of the experience of pain because
Speaker 1: of disruptions that depression or anxiety have on your brain function.
Speaker 3: Right, And I know that, like there has been a
Speaker 3: lot of oh, well, you know your depression or anxiety
Speaker 3: is probably causing your your chronic pain, instead of maybe
Speaker 3: considering that it might be that persistent, never ending, excruciating,
Speaker 3: inescapable pain might lead to I don't know, say a
Speaker 3: bit of depression or anxiety, Like couldn't that be the case? Yeah?
Speaker 1: Yeah, and then both of those things change your brain
Speaker 1: architecture to make them both worse, like a self fulfilling prophecy.
Speaker 3: Uh huh.
Speaker 1: Yeah, it's not great. Yeah, it's really not great. The
Speaker 1: other biggest sequelee of endometriosis is infertility or difficulty conceiving.
Speaker 1: And again here we don't know why. Huh really, yeah,
Speaker 1: we don't know if it's because of scar tissue that
Speaker 1: can form, especially if it's from endometriomas on the ovary
Speaker 1: like scarring the ovary or disrupting the number of ovarian
Speaker 1: follicles that you have left, or if it can cause
Speaker 1: scarring in the Filippian tubes, or there's some thought that
Speaker 1: it's just from how much inflammation exists in the pelvis
Speaker 1: because of endometriosis, because again it's an open cavity between
Speaker 1: your ovary and your Filippian tubes, so small space, but
Speaker 1: it's all bathed in the same fluid. And so if
Speaker 1: that fluid is full of inflammation, then how is that
Speaker 1: egg supposed to make it safely into the uterus? Right,
Speaker 1: So we don't really know the mechanisms, but endometriosis is
Speaker 1: strongly associated with difficulty either getting pregnant or carrying a
Speaker 1: pregnancy to term, but especially in getting pregnant. And let's
Speaker 1: talk about something that can have a huge impact on
Speaker 1: your mental and emotional well being, especially in a society
Speaker 1: that often ties a uterus holder's worth to their ability
Speaker 1: to conceive. Like, that's not small potatoes. That's a big deal, right, yep,
Speaker 1: yeah it is. What else do you want to know
Speaker 1: about endometriosiserin because that was a lot.
Speaker 3: I mean I would ask about treatment.
Speaker 1: But mm hm you want you want me to answer that,
Speaker 1: I'll will answer it. Yeah, Okay, treatment is a mixed bag.
Speaker 3: Yeah.
Speaker 1: So, some people with endometriosis respond very well to hormonal
Speaker 1: birth control, either combined contraceptives or something like an implant
Speaker 1: or an IUD, and that can be hugely beneficial. It
Speaker 1: can lighten periods, it can make them stop altogether, it
Speaker 1: can substantially reduce pelvic pain. But for anywhere from a
Speaker 1: quarter to a third of people that doesn't work at all,
Speaker 1: or they can't even try it because of other comorbidities
Speaker 1: or risk factors they might have, or maybe they want
Speaker 1: to become pregnant.
Speaker 3: Or maybe hormonal birth control pills have just never really
Speaker 3: have messed with other parts of their right, there's day
Speaker 3: to day life.
Speaker 1: There's a lot of risk factors associated with birth control
Speaker 1: as well. So for some then the next kind of
Speaker 1: step can be what are called GnRH ganadotropin releasing hormone agonists,
Speaker 1: which essentially put you into early menopause. That's what they do.
Speaker 1: They block all of the hormones associated with the menstrual cycle,
Speaker 1: like much more completely than combined contraceptives alone. But again
Speaker 1: they have their very long list of side effects hot flashes,
Speaker 1: skin changes, acne, mood changes. These can also affect your
Speaker 1: bone mineralization and bone density, so they put you at
Speaker 1: risk for like osteoporosis. And even these don't always work,
Speaker 1: So then there's surgery, and surgery sometimes is still cited
Speaker 1: as the kind of gold standard or the only quote
Speaker 1: real way whatever to diagnose endometriosis. Yeah, the trend is
Speaker 1: moving away from that, thankfully, Okay, Okay.
Speaker 3: And how much does that vary country by country.
Speaker 1: It's a good question that I don't know the answer to. Okay, Yeah,
Speaker 1: But in general, the consensus in the medical literature is
Speaker 1: moving away from surgery as a necessary diagnostic step because
Speaker 1: it used to be that you had to have histological
Speaker 1: proof of endometrial tissue outside of the uterus to call
Speaker 1: it endometriosis, and the only way you could get that
Speaker 1: was from surgery. But now we have other methods of
Speaker 1: being able to identify it, not only just with like
Speaker 1: clinical history, but also with imaging modalities like MRI and ultrasound,
Speaker 1: which can help to identify some kinds of endometriosis. But
Speaker 1: surgery is often also seen as a treatment option. So
Speaker 1: ablation or excision of the endometriolesians can help improve pain
Speaker 1: for a lot of people, but it can also in
Speaker 1: some cases create more inflammation and more adhesions, which can
Speaker 1: then exacerbate symptoms or possibly even lead to more endometriosis lesions.
Speaker 1: If we think that it's inflammation that's the driver rather
Speaker 1: than vice versa.
Speaker 3: That makes sense.
Speaker 1: Yeah, right. And hysterectomy or removal of the uterus with
Speaker 1: or without removal of the ovaries along with it used
Speaker 1: to be seen as curative, used to be done all
Speaker 1: the time. Oh still is done a lot. It is
Speaker 1: not curative, but it is still done sometimes for people. So, yeah,
Speaker 1: that's the treatment for endometriosis. It's not great. We don't
Speaker 1: have a lot and especially when it comes to the pain,
Speaker 1: Medicine today in twenty twenty one is bad at treating pain,
Speaker 1: especially chronic pain. We don't have a lot of good
Speaker 1: options for it, so that part of endometriosis is very difficult.
Speaker 1: If these other therapies aren't effective. So it's a bummer Erin.
Speaker 3: I mean, it's it's infuriating what it is.
Speaker 1: Yeah, and that was the longest biology section I've ever done.
Speaker 3: How there's a lot to unback despite the fact that
Speaker 3: we are still left with so many questions.
Speaker 1: Right, we don't know anything, and yet I talked for
Speaker 1: an hour, so Erin, tell me all about it. How
Speaker 1: did we get here? And why? Why?
Speaker 3: Why? Yeah? I will start on the longest history section
Speaker 3: right after this break. Before reading about endometriosis, I figured
Speaker 3: that it would be one of those episodes that followed
Speaker 3: like a relatively straightforward formula, like what evolutionary significance does
Speaker 3: it have? When was it first written about or first
Speaker 3: identified as a medical condition? Who discovered it? How has
Speaker 3: our knowledge about the pathophysiology changed over the last hundred years,
Speaker 3: and how have we gotten better at treating it?
Speaker 1: Yeah?
Speaker 3: And it's true I did come across a lot of
Speaker 3: information while researching that would answer those questions and fit
Speaker 3: into that formula, But as I read more, I felt
Speaker 3: like that wasn't what I wanted to talk about. What
Speaker 3: I found more compelling, and in my opinion, more important,
Speaker 3: was how the entire story of endometriosis kind of perfectly
Speaker 3: encapsulates many aspects of misogyny and gender inequality in medicine,
Speaker 3: and the implicit and explicit biases that often keep women
Speaker 3: from getting the healthcare they need and deserve. So that's
Speaker 3: what I'm going to talk a lot about today. Good,
Speaker 3: and before I dive in, I want to briefly discuss
Speaker 3: the language I'll be using. The story of endometriosis involves
Speaker 3: aspects of both sex aka common biological differences between males
Speaker 3: and females, as well as gender aka the socially constructed
Speaker 3: roles that vary between gender as that people identify with.
Speaker 3: And as you mentioned, Aaron, endometriosis can affect people who
Speaker 3: don't identify as women. It can affect people assign female, male,
Speaker 3: or intersex at birth, and its label as a female
Speaker 3: only or women's disease can be very damaging and can
Speaker 3: delay diagnosis even further for those that don't fit the
Speaker 3: description of a typical ENDO patient, whatever that means. But
Speaker 3: much of what I'll be talking about today is a
Speaker 3: gendered issue. It has to do with the way that
Speaker 3: women are perceived in medicine and how that impacts their treatment.
Speaker 3: The fact that endometriosis primarily occurs in people assigned female
Speaker 3: at birth has given rise to many of the social
Speaker 3: issues and medical disparities surrounding endometriosis. Many of these issues,
Speaker 3: such as how people experiencing pain are perceived by medical providers,
Speaker 3: are discussed in the literature and in scientific studies using
Speaker 3: the terms men and women without saying whether they mean
Speaker 3: sex or gender, but generally we're speaking referred to cisgender people.
Speaker 3: This is definitely a huge limitation of these studies and
Speaker 3: of this discussion as well, especially since there are many
Speaker 3: ways that trans or gender non binary people are treated
Speaker 3: differently than CIS people in medicine, often in ways that
Speaker 3: negatively impact their health. And I'm going to try my
Speaker 3: best to be inclusive and not to ignore the experiences
Speaker 3: of those people or exclude them from this history. But
Speaker 3: studies examining those aspects are scarcer, Yeah.
Speaker 1: Like horrifically scarcer, as in almost non existent.
Speaker 3: Basically yeah, almost non existent. Okay, So let's dive in.
Speaker 3: Like I said, I want to talk broadly about medical
Speaker 3: bias against women and what that means for endometriosis. But
Speaker 3: in order to do that, I should first tell you
Speaker 3: a bit about the history of endometriosis.
Speaker 1: Yeah, tell me a little, right first.
Speaker 3: Why does endometriosis exist? I mean, I have no idea, No,
Speaker 3: let's be clear, but you know I have some food
Speaker 3: for thought. Maybe so. As you said erin, endometriosis is
Speaker 3: often associated with infertility or subfertility. And while we don't
Speaker 3: have a complete grasp on what causes endometriosis, like you
Speaker 3: said Aaron, heredity does seem to play a part, and
Speaker 3: many diseases are caused by a mixture of genetic predisposition
Speaker 3: and environmental factors. And it seems like in the case
Speaker 3: of endometriosis, I've read that it's about fifty percent genes
Speaker 3: and fifty percent environmental factors.
Speaker 1: Yeah, that's what I read as well.
Speaker 3: Yeah, so it seems like it should be selected against
Speaker 3: at least a little bit, just by virtue of the
Speaker 3: fact that people with endometriosis tend to be less likely
Speaker 3: to pass on those alleles or the predisposition for ENDO.
Speaker 3: But that's not what the numbers seem to show. And
Speaker 3: as I'm sure you'll talk more about, endometriosis is incredibly common.
Speaker 3: Like I've seen estimates from ten to fifteen percent, and
Speaker 3: those frankly seem like they could be conservative estimates or underestimates,
Speaker 3: because I'm sure many people with endometriosis never get a
Speaker 3: diagnosis for any number of reasons, such as whether they
Speaker 3: can afford to see a doctor, to take time off
Speaker 3: work and find reliable transport to a doctor, or even
Speaker 3: if they can see a doctor, maybe they're just dismissed
Speaker 3: or called dramatic, or maybe they just don't know that
Speaker 3: debilitating periods aren't normal because periods are a taboo discussion topic.
Speaker 1: I feel like that's such an important one because it's
Speaker 1: still so common today that people have no idea that
Speaker 1: they don't have to exist or they shouldn't have to
Speaker 1: exist in that much pain, like that shouldn't be normal.
Speaker 3: I mean even periods themselves. Do we need to have periods?
Speaker 1: Like?
Speaker 3: No, no, oh we don't. It's very interesting anyway. So yeah,
Speaker 3: and then of course, on top of all of those factors,
Speaker 3: there are these racial and economic disparities in obtaining a
Speaker 3: diagnosis that are very frustrating. Doesn't really begin to cover it,
Speaker 3: but yeah, but whether it's ten to fifteen percent or
Speaker 3: likely much higher, endometriosis is extremely prevalent, and again more
Speaker 3: than it seems like it should be maybe for something
Speaker 3: that can affect fertility. But remember that it's not just
Speaker 3: your genes determining whether or not you get endometriosis. It's
Speaker 3: also environmental factors. And it turns out that endometriosis might
Speaker 3: not deserve the reputation it has for causing infertility. So
Speaker 3: it seems like in a lot of the literature and
Speaker 3: estimate around thirty percent is often reported, but more recent
Speaker 3: studies put it actually lower at about ten to thirteen percent.
Speaker 1: Of people with endometriosi that will have infertility, got it right?
Speaker 1: I think most of the most of this numbers that
Speaker 1: I saw cited was like, of people with infertility, how
Speaker 1: many of them have endometriosis, which is a very interesting
Speaker 1: way to look at the statistics.
Speaker 3: It is, yeah, but yeah, So it seems like this
Speaker 3: reputation that endometriosis has for basically being a one to
Speaker 3: one infertility is not necessarily yeah the case. And I
Speaker 3: also read a couple of papers that proposed an evolutionary
Speaker 3: explanation for endometriosis. So I will admit I feel a
Speaker 3: little bit out of my depth here, but I'm going
Speaker 3: to just attempt to do my best, essentially. In these papers,
Speaker 3: which were from twenty twenty one, the authors suggested that
Speaker 3: endometriosis and polycystic ovarian syndrome are opposites. Did you know
Speaker 3: this paper?
Speaker 1: I saw that paper and I was like, ooh, what's
Speaker 1: this baby? Interesting? Or and interesting?
Speaker 3: Mm hmmmm hmmm. And so endo and PCO or at
Speaker 3: these like two extremes of a spectrum. This is what
Speaker 3: the author suggested that is determined by levels of prenatal
Speaker 3: testosterone exposure, with high prenatal levels equaling PCOS and low
Speaker 3: prenatal levels equaling endometriosis. So during development, if a fetus
Speaker 3: is exposed to levels of testosterone that are outside the
Speaker 3: quote normal range, certain traits associated with fertility or fecundity
Speaker 3: are brought to their extremes. And the way that I
Speaker 3: started thinking about this was like too much of a
Speaker 3: good thing. So individually, these traits might be helpful for fertility,
Speaker 3: but when you have too many of those traits or
Speaker 3: they are expressed too highly, it can be hurtful. So
Speaker 3: something like uterine contractions, it's great for when you have
Speaker 3: fetus with a big head in there, but horrible for
Speaker 3: when you have menstrual cramps that lay you flat, or
Speaker 3: like inflammation right, high level like inflammation is good, it
Speaker 3: helped what keeps us healthy. To high levels of inflammation
Speaker 3: can be really, really bad. So taking all that together,
Speaker 3: I feel like we can start to see why endometriosis
Speaker 3: exists and why we see it in fairly prevalent numbers today.
Speaker 3: So my next question is do we have more endo
Speaker 3: today than we've had in the past. How long has
Speaker 3: endometriosis been around. Endometriosis often gets called a modern disease
Speaker 3: or a modern epidemic. Did you come across papers describing
Speaker 3: it that way?
Speaker 1: No, but I'm not surprised.
Speaker 3: Okay, I don't like this for a number of reasons. First,
Speaker 3: I don't love the term modern epidemic to describe endometriosis
Speaker 3: because I'm not convinced that we have enough data about
Speaker 3: historical rates to say whether there's an actual increase or
Speaker 3: if it's just that we're more aware of it so
Speaker 3: it's diagnosed more often. Second, is that calling it a
Speaker 3: modern disease implies that it has emerged only recently, which
Speaker 3: is untrue. Humans have probably been experiencing endometriosis for millennia,
Speaker 3: as I'll get into and some people who defend the
Speaker 3: use of the term modern to describe endometriosis say that
Speaker 3: it's because it was only defined as a clinical entity
Speaker 3: within the past one hundred to one hundred and fifty years,
Speaker 3: and that definitive diagnosis by examining tissue under a microscope
Speaker 3: was only possible in the last one hundred years. So
Speaker 3: despite the existence of ancient medical texts describing abnormal bleeding
Speaker 3: associated with pelvic pain and infertility, those descriptions apparently aren't
Speaker 3: specific enough to be called endometriosis, which I'll grant is fair.
Speaker 3: Retrospective diagnosis is always a problem.
Speaker 1: Yeah, and there's a lot of things that can cause
Speaker 1: pelvic plane and abnormal bleeding.
Speaker 3: Absolutely, but I still think it's misleading to call endometriosis modern.
Speaker 3: I agree because I feel like by that definition, there
Speaker 3: are a whole lot of diseases that have likely been
Speaker 3: with heus for millennia, but quote discovered only recently. Does
Speaker 3: a disease exist only when it's been given a name
Speaker 3: and a clinical description, No, of course not. All that said,
Speaker 3: it is possible that endometriosis is on the rise, and
Speaker 3: we should look to see if it is and if
Speaker 3: it is the case, we should obviously try to find
Speaker 3: out why. But endometriosis is an ancient disease. There are
Speaker 3: descriptions of painful menstruation which could be endo, dating back
Speaker 3: to eighteen fifty five BCE from ancient Egypt, and then
Speaker 3: again in ancient Greece in the Hippocratic text from the
Speaker 3: fifth and fourth centuries BCE, describing menstrual dysfunction as a
Speaker 3: cause of disease, with pain and infertility resulting if left untreated,
Speaker 3: and pregnancy as a possible cure, which, despite not being
Speaker 3: true not being a cure, is often still reckon mended today.
Speaker 3: In fact, I read in one book, uh for this episode,
Speaker 3: that somebody commented on a Facebook page for a group
Speaker 3: called endoactive about this quote. My doctor told me having
Speaker 3: a baby would help my pain. I'm only eleven. What
Speaker 3: uh huh yeah, oh no, mm hmm oh no erin yeah,
Speaker 3: I've been mad for the fast time I've been researching this.
Speaker 1: I'm not going to get over that one, I know,
Speaker 1: I know.
Speaker 3: Yeah.
Speaker 1: So.
Speaker 3: In these Hippocratic texts are also the descriptions of the
Speaker 3: group's most susceptible to these gynecological disorders, women who remained childless,
Speaker 3: young widows, and virgins who had already menstruated but remained unmarried,
Speaker 3: some of which sounds disturbingly familiar to the nickname that
Speaker 3: was given to endometriosis in the nineteen sixties to the
Speaker 3: nineteen eighties or so, the quote career woman's disease.
Speaker 1: Oh my god, I saw that in one paper and
Speaker 1: I barfed in my mouth. I do.
Speaker 3: Basically, it's like, well, you put off your child bearing
Speaker 3: duties and rejected your social and gender role, so this
Speaker 3: is what you get.
Speaker 1: It's the natural consequence.
Speaker 3: Uh huh. Obviously, the Hippocratic texts didn't refer to these
Speaker 3: symptoms as endometriosis or as even like one specific disease,
Speaker 3: but rather they were part of what was called hysteria,
Speaker 3: after the Greek word for the uterus. And I'll talk
Speaker 3: more about the history of hysteria and it's wandering definitions
Speaker 3: in a bit, but first I want to wrap up
Speaker 3: the history of endometriosis. Even though they are tied together,
Speaker 3: so many people who were diagnosed with hysteria probably had endo. Anyway,
Speaker 3: from those ancient texts describe be pain during menstruation and
Speaker 3: abnormal periods, there doesn't really seem to be a ton
Speaker 3: of other mentions of what could be endometriosis, not because
Speaker 3: people weren't experiencing it, but likely because there was and
Speaker 3: still is a huge taboo surrounding menstruation from Leviticus in
Speaker 3: the Old Testament quote if a woman has a discharge,
Speaker 3: and the discharge from her body is blood, she shall
Speaker 3: be set apart seven days, and whoever touches her shall
Speaker 3: be unclean until evening. Fast forward to the first time
Speaker 3: that the word period was said on television like you know,
Speaker 3: like menstrual period nineteen eighty five, no way, by Courtney
Speaker 3: Cox in a tampon commercial.
Speaker 1: Wow, uh huh, so I'm sorry. Before that they had
Speaker 1: tampon commercials without saying the word period.
Speaker 3: Or did they have tampon commercials?
Speaker 1: Maybe they didn't have tampons.
Speaker 3: The history of the tampon would be a fascinating one
Speaker 3: to research.
Speaker 1: There is we haven't even done, just like regular menstruation,
Speaker 1: I know, I know, know anyways.
Speaker 3: Anyways, but we have been conditioned to think of periods,
Speaker 3: these absolutely normal things, as gross and shameful when they
Speaker 3: are neither, and that stigma surrounding periods can lead to
Speaker 3: this damaging silence where because we are shamed from talking
Speaker 3: about periods because it's not polite conversation. We don't know
Speaker 3: whether our own periods are normal because we don't hear
Speaker 3: the experiences of others. Right, The persistent labeling of menstrual
Speaker 3: periods as a distasteful and shameful subject has profound implications
Speaker 3: for public health, and it creates enormous inequities for people
Speaker 3: who menstruate. In most states, tampons, for example, are subject
Speaker 3: to sales tax, and also in most states, prisons charge
Speaker 3: inmates for menstrual products. I know, there's just so much,
Speaker 3: so much, there's so much. But circling back to the
Speaker 3: history part of this, maybe the reason that endometriosis doesn't
Speaker 3: show up very much until basically the eighteen hundreds is
Speaker 3: because the people writing medical texts were primarily men, most
Speaker 3: of whom would have considered it deeply improper and probably
Speaker 3: gross to ask a woman about her periods. It's absolutely
Speaker 3: possible and likely that women discuss periods amongst themselves, and
Speaker 3: there was probably a great deal of knowledge held by
Speaker 3: women healers, which was mostly lost as medical licensing laws
Speaker 3: came into effect, which both prohibited them from practicing reasonable
Speaker 3: licenses are good and even applying to medical school. If
Speaker 3: you weren't a white wealthy man, you weren't getting in.
Speaker 3: But with the increasing popularity of autopsies in the nineteenth century,
Speaker 3: people begin linking more and more signs and symptoms of
Speaker 3: disease with pathological changes in the body. Karl Vaughan Rokotansky,
Speaker 3: whose name you may remember from our pupil Fever episode.
Speaker 1: There it is.
Speaker 3: He was friends with and worked at the same hospital
Speaker 3: as Semmelweis, and he was like the King of autopsies.
Speaker 3: He performed an incredible number of autopsies. Rokatansky is usually
Speaker 3: credited with being the first person to describe endometrio lesions.
Speaker 3: In the eighteen sixties, he published a paper where he
Speaker 3: wrote that quote some fibrous tumors of the uterus contain
Speaker 3: gland like structures that resemble endometrio glands end quote YEA.
Speaker 3: And there was a series of autopsy studies done by
Speaker 3: other physicians from England, Germany, Holland and Scotland also in
Speaker 3: the eighteen hundreds that went further than Rokatansky to characterize
Speaker 3: the disease, but it wasn't until nineteen twenty one that
Speaker 3: It was given the name endemtri triosis by John Sampson,
Speaker 3: who is an American gynecologist who also did the first
Speaker 3: systematic study of the disease and proposed a hypothesis that
Speaker 3: is still the most popular today, the menstrual backwash hypothesis.
Speaker 3: The papers published by Samson marked a turning point in
Speaker 3: the history of endometriosis. They turned it from a medical
Speaker 3: curiosity into a clinical entity, and now that it had
Speaker 3: a name, it meant that information could be compiled and
Speaker 3: shared under that name. Receiving a diagnosis itself didn't do
Speaker 3: much good, similar to today, in many cases and often
Speaker 3: did harm because, like you said, Aaron, usually a complete
Speaker 3: removal of the uterus was suggested as the only effective treatment.
Speaker 3: A couple of decades after Samson's papers, endometriosis of the lungs,
Speaker 3: large bowel, colon, rectum, bladder, lymph node, cervix, round ligaments,
Speaker 3: and so on had been reported, and physicians began to
Speaker 3: realize that it was a lot more prevalent than Samson
Speaker 3: had thought, who described it as a rare disease. Laparoscopic
Speaker 3: surgery began to be more regularly used for the removal
Speaker 3: of lesions starting in around the late nineteen seventies early
Speaker 3: nineteen eighties. But frankly, is as you went over, not
Speaker 3: a whole lot of progress seems to have been made since. Like, yes,
Speaker 3: we know more about endometriosis now than we did one
Speaker 3: hundred years ago, but we're still limited in treatment and
Speaker 3: hugely lacking in awareness among both medical professionals as well
Speaker 3: as the general public, which has led in part to
Speaker 3: the ridiculous delay in endometriosis diagnosis. I mean, I've seen
Speaker 3: estimates of six to twelve years.
Speaker 1: Yeah, I've seen even higher sometimes like ten to fifteen
Speaker 1: years lag between symptoms and diagnosis.
Speaker 3: Right, And this delay is of course not equal across
Speaker 3: racial and economic groups, with people of color and those
Speaker 3: in lower economic classes experiencing a much longer delay. So
Speaker 3: what I wanted to take time to explore in more
Speaker 3: depth was why this damaging diagnostic delay exists. Why is
Speaker 3: it six to twelve years or ten to fifteen years.
Speaker 3: Why do we still not seem to know very much
Speaker 3: about endometriosis, what causes it, how to treat it, why
Speaker 3: do some people get it and others don't? And exploring
Speaker 3: those questions kind of led me into reading more generally
Speaker 3: about the pervasive mistreatment and under treatment of women by
Speaker 3: the medical system. Right off the bat, I want to
Speaker 3: mention the books that I read for this because I'll
Speaker 3: probably be quoting from them a lot, one in particular,
Speaker 3: and they are phenomenal and I learned so much and
Speaker 3: got so angry along the way. Doing Harm by Maya
Speaker 3: duson Berry and Pain and Prejudice by Gabrielle Jackson are
Speaker 3: both nonfiction books about the systemic issues in medicine and
Speaker 3: how women are treated. Ask Me About My Uterus by
Speaker 3: Abbie Norman and Giving Up the Ghost by Hillary Mantel
Speaker 3: are memoirs about endometriosis. Hillary Mantel's book includes a section
Speaker 3: on her experience with enemetriosis. It's not entirely about ENDO.
Speaker 3: I loved them all and you should read them all, Okay.
Speaker 3: So the way that I wanted to structure this discussion
Speaker 3: is taken directly from Maya Dusenberry's Doing Harm. In this
Speaker 3: incredible book, she lays out what she calls the knowledge
Speaker 3: gap and the trust gap. The knowledge gap is basically
Speaker 3: that there isn't as much scientific and medical knowledge about
Speaker 3: women's bodies and health issues than there is about men's
Speaker 3: and this goes all the way from the very basic
Speaker 3: biomedical research only including male animals and studies all the
Speaker 3: way to women being underrepresented in clinical trials and diseases
Speaker 3: specific to women receiving less funding. The trust gap is
Speaker 3: simply that quote women's accounts of their symptoms are too
Speaker 3: often not believed. The trust gap and the knowledge gap
Speaker 3: don't operate independently. They reinforce each other to perpetuate the
Speaker 3: mistreatment and under treatment of women by the medical system.
Speaker 3: Quote from Dusomberry. Women's symptoms are not taken seriously because
Speaker 3: medicine doesn't know as much about their bodies and health problems.
Speaker 3: And medicine doesn't know as much about their bodies and
Speaker 3: health problems because it doesn't take their symptoms seriously. End quote.
Speaker 3: Dousomberry points out that these issues aren't about a few
Speaker 3: bad apples in the medical system mistreating women, but rather
Speaker 3: the unconscious bias that is structurally embedded in medicine. So
Speaker 3: let's explore these two facets in a bit more depth,
Speaker 3: starting with the knowledge gap. As with any structurally embedded issue,
Speaker 3: we discuss the podcast. The knowledge gap has deep roots,
Speaker 3: stemming from the hundreds of years during which women were
Speaker 3: seen as biologically inferior to men and whose bodies were
Speaker 3: either not worthy of study or improper to examine. And
Speaker 3: if they were studied, for instance, by the so called
Speaker 3: father of gynecology, Mary and Simms, who built the profession
Speaker 3: on the backs of enslaved women, they were essentially tortured,
Speaker 3: given no anesthesia or pain relief, seen to be subhuman.
Speaker 3: The ideal baseline that defined what was medically quote normal
Speaker 3: or human was a white adult male, and let's be honest,
Speaker 3: a wealthy one. This is pretty clear when we look
Speaker 3: at how menstrual periods were described in medical texts throughout
Speaker 3: the eighteen hundreds as times of ill health. Anytime a
Speaker 3: woman was either pregnant, menstruating, or in menopause, she was
Speaker 3: considered unwell and her thoughts scattered and disturbed, which was
Speaker 3: used in arguments against women being allowed to attend universities
Speaker 3: and higher education. Anyway was thought to atrophy the uterus.
Speaker 1: Atrophy the uterus, you can't have that, absolutely not that
Speaker 1: brain thinking.
Speaker 3: And this perception of periods, of course, didn't just disappear
Speaker 3: suddenly in nineteen hundred. There's even a textbook from the
Speaker 3: nineteen seventies that describes dysmenorrhea as a symptom of a
Speaker 3: personality disorder.
Speaker 1: I don't have any words. I'm just going to keep
Speaker 1: fish mouthing over here.
Speaker 3: So that just made me think that there are probably
Speaker 3: some physicians still practicing today that may have been trained
Speaker 3: on that information.
Speaker 4: Oh definitely, yeah, up until at least the nineteen nineties,
Speaker 4: although you could argue, probably successfully that it's still the
Speaker 4: case today.
Speaker 3: It was that science knew nothing about women's bodies and health.
Speaker 3: It was just that they knew a lot less than
Speaker 3: they did about men's And let's look at why this is.
Speaker 3: As I mentioned earlier, the medical licensing laws enacted in
Speaker 3: the eighteen hundreds in effect excluded women and people of
Speaker 3: color from practicing medicine and contributing to the field. Those
Speaker 3: that remained were white, wealthy men, and so a white
Speaker 3: male as the baseline for comparison, and the health ideal
Speaker 3: became entrenched in medical training and medical knowledge well into
Speaker 3: the twentieth century. The nineteen sixties and nineteen seventies saw
Speaker 3: a great deal of change in terms of medical ethics,
Speaker 3: as things like Tuskegee and tholidamide revealed the enormous failings
Speaker 3: of informed consent and protections for vulnerable individuals. Many of
Speaker 3: these developments in drug safety studies were overwhelmingly positive in
Speaker 3: terms of preventing people from being coerced into unsafe studies
Speaker 3: and being harmed, But one unintended consequence was when protection
Speaker 3: turned paternalistic, essentially preventing women from being included in drug
Speaker 3: trials simply because they were women, or, more specifically, in
Speaker 3: the nineteen seventy seven FDA policy excluding women of quote
Speaker 3: child bearing potential from early phase drug studies. This meant
Speaker 3: anyone who potentially could get pregnant.
Speaker 1: Right, anyone with a uterus that was presumed to be working, right, yeah, yeah,
Speaker 1: any does it? Any of them?
Speaker 3: Any any of them, doesn't matter, doesn't matter. This is
Speaker 3: a complicated subject, of course, because ensuring that no coercion
Speaker 3: occurs with informed consent is still tricky and there are
Speaker 3: potential risks associated with participating in clinical trials. But also
Speaker 3: without the inclusion of women of quote child bearing potential
Speaker 3: in these studies, how would we know if that drug
Speaker 3: is safe or effective for them? This is especially problematic
Speaker 3: and tricky in terms of pregnant people, where it's kind
Speaker 3: of like a rock and a hard placed situation, basically
Speaker 3: forcing a choice between including pregnant people in clinical trials
Speaker 3: which could put the fetus and the person at risk,
Speaker 3: or in effect testing it out on them later in
Speaker 3: an uncontrolled fashion, hoping that the studies showing it safe
Speaker 3: in people who are not pregnant will mean that it's
Speaker 3: safe for pregnant people. It's complicated, and I'm not going
Speaker 3: to go into it here because I just don't have
Speaker 3: the background knowledge to do so. But one thing that
Speaker 3: does seem to be clear is that there is underrepresentation
Speaker 3: of women and pregnant people in clinical trials.
Speaker 1: That's why all drugs during pregnancy just have these like
Speaker 1: wacky like well, we don't know if it's safe, but
Speaker 1: we don't know if it's harmful, so it's probably fine.
Speaker 1: Like the scales that you use to define whether or
Speaker 1: not something is safe and pregnancy or not the same
Speaker 1: as when you're not pregnant.
Speaker 3: Uh huh. It's far from a perfect system, and it
Speaker 3: means a lot of work. Yeah, but the lack of
Speaker 3: inclusion of women in medical studies can't all be chalked
Speaker 3: up to this protective policy. Women were also explicitly excluded
Speaker 3: simply because they were women. Explanations ranged from, well, men
Speaker 3: and women are so similar that results from an all
Speaker 3: men's study can be extrapolated to women. To women's menstrual
Speaker 3: cycles and hormonal shifts could confuse the study results.
Speaker 1: You can't have it both ways, exactly A.
Speaker 3: If results from men only studies could be extrapolated to women,
Speaker 3: then why weren't there any all women studies that were
Speaker 3: extrapolated to men. B If there were no meaningful differences
Speaker 3: between men and women, why not include them both in
Speaker 3: the clinical trial? See if menstruation could significantly affect the
Speaker 3: results of a drug trial, why on earth is it
Speaker 3: not a reason then to include women rather than to
Speaker 3: exclude them? And the answer to all of these here's
Speaker 3: another quote, And I just I should say that unless
Speaker 3: I say differently, these quotes are from doing harm by
Speaker 3: Maya Dusonberry quote. In short, studying only one sex was
Speaker 3: cheaper and easier, and men were the chosen ones because
Speaker 3: women's bodies were thought to be too complicated.
Speaker 1: Yeah.
Speaker 3: Yeah, And there's also the matter that the medical community,
Speaker 3: which since its infancy had been comprised primarily of men,
Speaker 3: either consciously or subconsciously, felt that to know the health
Speaker 3: effects on men was enough, right, Like, well, we know
Speaker 3: it on men, so that's good, right, Like.
Speaker 1: Yep, that's all we need.
Speaker 3: And maybe it wasn't this malicious thing. Maybe it just
Speaker 3: wasn't even thought about. Women didn't even enter into the consideration,
Speaker 3: which feels malicious, even though I'm saying it as it
Speaker 3: wasn't malicious. I don't know. But it wasn't until the
Speaker 3: late nineteen eighties that enough women were involved in the
Speaker 3: medical community to bring these enormous gender disparities in medical
Speaker 3: research to light. At this time, a group of scientists
Speaker 3: who were women formed what is now known as the
Speaker 3: Society for the Advancement of Women's Health Research, and they
Speaker 3: demanded an audit by the Government Accounting Office the GOAO
Speaker 3: of the NIH's research efforts to see how well they
Speaker 3: had stuck to the nineteen eighty five Policy for the
Speaker 3: Inclusion of Women in research. This GOAO report, which was
Speaker 3: published in nineteen ninety, was staggering. They had done next
Speaker 3: to nothing in most of the studies that the NIH funded.
Speaker 3: They couldn't say what other women were included, or if
Speaker 3: they were how many. So far, I've talked about this
Speaker 3: more generally right, more and more descriptive, abstract women are
Speaker 3: excluded from studies. So let's get into some more solid
Speaker 3: examples that illustrate the knowledge gap. For example, there's a
Speaker 3: famous study called the Baltimore Longitudinal Study of Aging that
Speaker 3: was started in nineteen fifty eight and aimed to study quote,
Speaker 3: normal human aging. This was the one that found that
Speaker 3: a baby aspirin a day could be protective against heart disease.
Speaker 3: You know that, Like, now that's conventional wisdom or whatever. Yeah,
Speaker 3: that study didn't include women, included thousands of men. It
Speaker 3: didn't include women for twenty years. Another large scale study
Speaker 3: started in nineteen eighty two, whose aim was to study
Speaker 3: the effects of dietary change and exercise on heart disease,
Speaker 3: included thirteen thousand men and zero men, despite the fact
Speaker 3: that heart disease is and was then one of the
Speaker 3: leading causes of death in women. And then there's this
Speaker 3: I think it takes the cake quota directly again from
Speaker 3: doing harm by Maya Dusonberry. There's a quote and then
Speaker 3: a quote within a quote. So the inception of quotes
Speaker 3: quote and nih supported pilot study from Rockefeller University that
Speaker 3: looked at how obesity affected breast and uterine cancer didn't
Speaker 3: enroll a single woman.
Speaker 1: I'm sorry, breast and uterine cancer.
Speaker 3: It is true that people assigned mail at birth do
Speaker 3: develop breast cancer.
Speaker 1: Uh huh and uterine cancer, Aaron, I don't think so. Yeah, No,
Speaker 1: you need a uterus for that.
Speaker 3: Yeah, continuing the quote as representative Snow noted dryly at
Speaker 3: the congressional hearings.
Speaker 1: Quote.
Speaker 3: Somehow, I find it hard to believe that the male
Speaker 3: dominated medical community would tolerate a study of prostate cancer
Speaker 3: that used only women as research subjects.
Speaker 1: And quotes.
Speaker 3: I can't. That one just echoed in my head for days.
Speaker 3: Nearly anywhere they looked, there was a striking lack of
Speaker 3: inclusion of women and enormous consequences because of that. Biological
Speaker 3: differences between people assigned male at birth and people assigned
Speaker 3: female at birth have historically been used to claim inferiority
Speaker 3: or superiority while failing to examine the potential health impact
Speaker 3: of that difference, such as in the way drugs are metabolized,
Speaker 3: which is impacted by fat distribution and hormones, among other factors.
Speaker 3: So when women aren't included in drug trials, should we
Speaker 3: be surprised by the finding that women are quote fifty
Speaker 3: to seventy five percent more likely than men to have
Speaker 3: an adverse drug reaction. Like, that's not a surprising finding,
Speaker 3: it's horrible.
Speaker 1: Well, and I also just wonder how many of those
Speaker 1: adverse drug reactions are often just passed off as being oh, well,
Speaker 1: like not real you know, uh huh, discounted.
Speaker 3: I'm sure many. Yeah, the dosing of too many drugs
Speaker 3: has been determined by how it affects men's bodies and
Speaker 3: also overall, like people within a certain BMI range. Or
Speaker 3: take chronic pain for example, which women are known to
Speaker 3: be disproportionately affected by, and studies indicate that women experience
Speaker 3: pain differently than men. And again, these studies didn't make
Speaker 3: the distinction between whether they were talking about sex or
Speaker 3: gender or whatever these pain differences. There was a study
Speaker 3: from two thousand and five that found that almost eighty
Speaker 3: percent of animal pain studies used male animals only. And
Speaker 3: while the lack of sex analysis in animal studies of
Speaker 3: all kinds is hugely problematic, it really only captures one
Speaker 3: aspect of the knowledge gap. These studies don't take into
Speaker 3: account the gender bias and social factors that influence health
Speaker 3: and are hugely important to examine. The nineteen ninety GAO
Speaker 3: Report did change some things for the better, but were
Speaker 3: still not even close to equitable, and many studies simply
Speaker 3: failed to report any sex or gender analysis of results.
Speaker 3: There have been suggestions to require the inclusion of such
Speaker 3: analysis for publication in peer reviewed journals, but that has
Speaker 3: been met with some resistance for vague scientific reasons, whatever
Speaker 3: that means. But still, even though things are getting better,
Speaker 3: there is a huge lag time in between and when
Speaker 3: those studies are conducted to when the results are analyzed
Speaker 3: and published, to when it becomes presented to the interested field,
Speaker 3: to then the wider community, to then when it becomes
Speaker 3: included in textbooks, to then when it trickles out to
Speaker 3: the rest of the public. Let's illustrate picture someone having
Speaker 3: a heart attack. Okay, what do they look like? What
Speaker 3: are they doing? What are those signs and symptoms they
Speaker 3: seem to be feeling.
Speaker 1: This is a really good example.
Speaker 3: Arin I love this example. Is it an older man,
Speaker 3: probably an older white man, clutching at his left arm
Speaker 3: and his chest.
Speaker 1: Salt and pepper hair, saltan pepper hair.
Speaker 3: Maybe he's got like a short sleeve button up, shirt on.
Speaker 1: Definitely.
Speaker 3: Uh huh, it's like sweating a lot, sweaty.
Speaker 1: Super sweaty. He describes a pressure in the center of
Speaker 1: his chest, which radiates to his left arm and maybe
Speaker 1: up into his jaw. He clutches at his chest and
Speaker 1: then gasping for breath. Yeah.
Speaker 3: How many of you pictured a woman with maybe some
Speaker 3: uncomfortable back pain or flu like symptoms?
Speaker 1: Did anyone anybody?
Speaker 3: Maybe? I thought there are some out there for sure,
Speaker 3: because much of the early research on heart attacks was
Speaker 3: focused on men. That's the search image we have, and
Speaker 3: it can be deadly, like when a study from two
Speaker 3: thousand found that quote young women and I think by
Speaker 3: this was meant like under the age of fifty are
Speaker 3: seven times more likely to be sent home from the
Speaker 3: hospital in the middle of having a heart attack. Seven
Speaker 3: times those have fatal consequences.
Speaker 1: There. Oh god, Aaron, there's so many good examples of this. Uh.
Speaker 1: Do you know about the testicular torsion? One m testicular torsion.
Speaker 1: It's when your testicle twists on itself and it can
Speaker 1: cut off the blood flow. It's an absolute emergency, causes
Speaker 1: excruciating pain. Okay, in the testicles, and they say time
Speaker 1: is tissue. You have six hours to like diagnose and
Speaker 1: treat testicular torsion, and people are really good at it.
Speaker 1: There's a lot of studies in hospitals, like the time
Speaker 1: from into the emergency room to treatment and like into
Speaker 1: the or it's super short ovaryan torsion.
Speaker 3: I knew you were gonna say that.
Speaker 1: Same exact thing. Okay, you're ovary twists around itself. The
Speaker 1: time from diagnosis to OAR is like I think, at
Speaker 1: least twice as long, if not missed entirely, Like it
Speaker 1: is staggering.
Speaker 3: Oh yeah, yeah, there are I mean, honestly, just grab
Speaker 3: bags full of examples about the diagnostic delay for any thing,
Speaker 3: the treatment delay, what kind of treatment that's received. I mean,
Speaker 3: in general, men are seen as sick while women are
Speaker 3: seen as stressed. And this, all of these examples that
Speaker 3: you and I just sort of went through, these are
Speaker 3: tied to both the knowledge gap and the trust gap.
Speaker 3: Medical doctors only know what heart attacks look like in men,
Speaker 3: and they are disinclined to believe that women's symptoms are real.
Speaker 3: So now let's get into the trust gap. If you
Speaker 3: thought the knowledge gap had deep roots, wait until you
Speaker 3: hear about the trust gap. In order to explain these roots,
Speaker 3: I'm going to take us through a brief history of hysteria,
Speaker 3: which was first described in ancient Egypt and got its
Speaker 3: name from ancient Greece. Like I said, from the Greek
Speaker 3: word for uterus histra, what is hysteria. It's basically the
Speaker 3: idea that a woman's health and mental status is tied
Speaker 3: directly to her utter and that all disease in a
Speaker 3: woman came from the uterus wandering around the body like
Speaker 3: literally wandering, but just like these restless uteri. The definition
Speaker 3: of hysteria has also wandered substantially throughout history. In ancient Greece,
Speaker 3: in Hippocratic texts from around the fifth century BCE, it
Speaker 3: seemed to be thought of as an organic biological process,
Speaker 3: one which was likely to happen if marriage was put
Speaker 3: off for too long or if a woman didn't get
Speaker 3: pregnant early enough after puberty. In Europe and the centuries after,
Speaker 3: throughout the medieval period, the meaning changed and became more
Speaker 3: spiritually based, and it was thought that the uterus could
Speaker 3: be inhabited by a demon or evil spirits, or possessed
Speaker 3: via witchcraft. And the uterus became the scapegoat for any
Speaker 3: disease or complaint that a woman had. In hysteria, the
Speaker 3: catch all diagnosis.
Speaker 1: It's so maligned, Aaron, it is.
Speaker 3: It is. Yeah, it hasn't gotten that much better, but
Speaker 3: it's kind somewhat yeah. And this quality of hysteria as
Speaker 3: a disease of exclusion, it was useful to physicians, especially
Speaker 3: as the field of medicine itself evolved. I've talked before
Speaker 3: on this podcast about how medicine changed substantially when measuring
Speaker 3: tools began to be introduced and measurements began to be
Speaker 3: compiled for certain diseases like blood pressure. You know, what's
Speaker 3: a normal range, what's not? Heart rate, red blood cell count,
Speaker 3: body temperature, etc. All these things. I think in our
Speaker 3: sickle cell episode, I talked about how these tools, in
Speaker 3: addition to medical specialization, led to medicine shifting to be
Speaker 3: less about the person and more about the body or
Speaker 3: a part of the body. It also led to this
Speaker 3: important distinction between signs and symptoms. Signs being something that
Speaker 3: someone who is not the patient can measure or see
Speaker 3: or feel. Symptoms are the things that only the patient
Speaker 3: can feel and describe. Signs are objective, symptoms subjective. As
Speaker 3: the ability to detect disease signs became more refined, diagnosis
Speaker 3: increasingly relied on signs rather than symptoms, and a physician
Speaker 3: could listen less or not at all to their patient
Speaker 3: and still end up successfully treating them, offering a not
Speaker 3: so great precedent. But it also meant that if there
Speaker 3: were no signs or the signs didn't tell them anything,
Speaker 3: they could and often did, disregard the symptoms as hysterical.
Speaker 3: In of the eighteen hundreds, Jean Martin Charcot tried to
Speaker 3: reclassify hysteria as a neurological disorder rather than a personality flaw,
Speaker 3: believing that believing that the ovaries, rather than the uterus,
Speaker 3: diverted energy from the brain during menstruation, pregnancy, lactation, menopause, ovulation,
Speaker 3: et cetera, and that the brain, drained of all this energy,
Speaker 3: could barely function and left women weak.
Speaker 1: Poor things just all the time.
Speaker 3: Plaques and lesions that Charco found around the ovaries and
Speaker 3: uterus during autopsies confirmed his hypothesis to him and led
Speaker 3: to an increase in gynecological surgeries, such as the removal
Speaker 3: of the ovaries, the uterus or the clitoris surgeries which
Speaker 3: were permanently damaging, if not fatal, which around fifty to
Speaker 3: seventy percent were in like the mid eighteen hundreds. I'm
Speaker 3: not going to get into Charco's ovary presser, but suffice
Speaker 3: it to say that he carried out extensive medicalized torture
Speaker 3: on women and asylums to try to confirm his ideas
Speaker 3: about hysteria from a wandering uterus to demonic possession to
Speaker 3: a neurological disease. Hysteria had one more major transformation to undergo,
Speaker 3: and it was this final one that left such an
Speaker 3: enduring mark on how women are perceived in medicine today.
Speaker 1: Enter Freud, one of the worst, one of the worst.
Speaker 3: I'm going to try not to talk about him too much,
Speaker 3: simply because, like any more your time, Well, I think
Speaker 3: he's important to talk about because of the damage that
Speaker 3: he's done, but I also want to get past him
Speaker 3: because there's just there's not enough time in the world
Speaker 3: to do all of this. So Freud initially jumped on
Speaker 3: the charcot of hysteria as a neurological disorder, but then
Speaker 3: changed his mind, turning it into a disease that was
Speaker 3: entirely psychological, often attributed to the underdevelopment of libido or sexuality,
Speaker 3: or the rejection of feminine values or feminine traits, cured
Speaker 3: through talk therapy. What this did was turn real things
Speaker 3: that women were experiencing, pain, fatigue, heavy or irregular periods, infertility,
Speaker 3: even into something that she was doing with her mind.
Speaker 3: It's all in your head. This probably sounds familiar to
Speaker 3: many people listening today who have maybe been told something
Speaker 3: similar by a doctor they thought they could trust. To listen,
Speaker 3: because despite how this story is sometimes told, hysteria didn't
Speaker 3: disappear after Freud. It may have fallen out of fashion
Speaker 3: and lost credibility as a medical diet dignosis a bit.
Speaker 3: But number one, it wasn't actually removed from the DSM,
Speaker 3: the Diagnostic and Statistical Manual of Mental Disorders until nineteen
Speaker 3: eighty and number two, it never really went away, but
Speaker 3: was rather repackaged. Out of this umbrella term hysteria came endometriosis, MS,
Speaker 3: chronic pelvic pain, many autoimmune diseases, samatitization, psychogenic illness, medically
Speaker 3: unexplained symptoms, so many things. Freud's transformation of hysteria into
Speaker 3: a psychological disorder turned women into unreliable sources on their
Speaker 3: own body. Essentially, a woman is thought to be lying
Speaker 3: about her symptoms unless there is observable proof to the contrary,
Speaker 3: or her symptoms are real but psychogenic unless you can
Speaker 3: prove otherwise. A gynecology textbook from nineteen seventy one said
Speaker 3: that quote many women wittingly or unwittingly exaggerate the severity
Speaker 3: of their complaints to gratify neurotic desires end quote, and
Speaker 3: in the same textbook that morning sickness quote may indicate resentment, ambivalence,
Speaker 3: and inadequacy in women ill prepared for motherhood. Ooh as
Speaker 3: if you needed more things to get angry about.
Speaker 1: Right, and I can't rage in front of the microphone.
Speaker 3: It's it all explains so much about today and how
Speaker 3: women are treated. Women began being seen as mentally ill
Speaker 3: rather than physically sick, and throughout the twentieth century the
Speaker 3: rate of psychogenic illness diagnoses increased enormously. If you were
Speaker 3: experiencing pain and complained too little, you weren't taken seriously
Speaker 3: because you weren't experiencing enough pain. But if you complain
Speaker 3: too much, you were labeled as an exaggerator, as dramatic
Speaker 3: as crazy. One proponent of psychogenic diagnoses says that quote
Speaker 3: the vehemence with which many patients insist their illness is
Speaker 3: medical rather than psychiatric, has become one of the hallmarks
Speaker 3: of the conditions. So like, the more you say no,
Speaker 3: this is a real pain, the more likely you are
Speaker 3: to be diagnosed with the psychogenic illness.
Speaker 1: Yeah, yeah, what.
Speaker 3: There are scientific studies backing up these implicit gender biases
Speaker 3: in medicine, and it's not just male doctors that are
Speaker 3: mistreating women. Women on average are more likely to report
Speaker 3: pain and less likely to receive pain treatment. And this
Speaker 3: is not just a gendered issue, of course, but a
Speaker 3: racial one as well, with people of color incredibly undertreated
Speaker 3: for pain. One study showed that after undergoing a coronary
Speaker 3: artery bypass graft.
Speaker 1: Oh my gosh, I hate this study.
Speaker 3: Uh huh, men were more likely to receive painkillers, while
Speaker 3: women were more likely to receive sedatives. A study from
Speaker 3: two thousand and six by Kiara Monte at All found
Speaker 3: that when med students and residents were presented with the
Speaker 3: description of a patient experiencing symptoms, they initially diagnosed these
Speaker 3: patients similarly regardless if the patient was described as male
Speaker 3: or female, but if a stressful life event was added
Speaker 3: to the description quote. Only fifteen percent of medical students
Speaker 3: or residents diagnosed heart disease in the woman, compared to
Speaker 3: fifty six percent for the man, and only thirty percent
Speaker 3: referred the woman to a cardiologist compared to sixty two
Speaker 3: percent for the man that quotes from pain and prejudice.
Speaker 3: The explanation given for the woman's symptoms turned from biological
Speaker 3: to psychological, and there was no difference in the results
Speaker 3: based on the gender of the doctors. It seems that
Speaker 3: too often when physicians meet with the patient, they see
Speaker 3: the diagnosis in the identity of the patient based on
Speaker 3: implicit biases built into the medical training system. If you're
Speaker 3: a woman, it's in your head or your uterus. If
Speaker 3: you're a black person, you're drug seeking. If you're trans
Speaker 3: and you're on hormone therapy, it's because of the hormones.
Speaker 3: If you're fat, it's because you need to lose weight.
Speaker 3: If you've ever been diagnosed with anxiety or depression, clearly
Speaker 3: that's what's causing your pelvic pain or your chronic fatigue.
Speaker 3: It's rarely that endometriosis could be a source of anxiety
Speaker 3: or depression, right instead of depression causing your pelvic pain.
Speaker 3: This anecdote paraphrased from doing harm. There was an eleven
Speaker 3: year old girl who had severe abdominal pain and nausea.
Speaker 3: She went to the er. The doctor told her it
Speaker 3: was menstrual cramps, despite the fact that she had not
Speaker 3: yet gotten her period. Ever, the pain didn't go away,
Speaker 3: so the next day, in agony, she had to be
Speaker 3: rushed back to the er, and at this point her mom,
Speaker 3: who was a physician, demanded an ultrasound, and they found
Speaker 3: the largest unruptured appendix that the surgeon had ever removed.
Speaker 3: Would that have happened if it had been eleven year
Speaker 3: old boy instead of an eleven year old girl?
Speaker 1: No, probably not.
Speaker 3: Did the doctor even ask have you ever had your
Speaker 3: period before? Does this feel like period crabs?
Speaker 1: Like?
Speaker 3: Are period cramps so bad that you should go to
Speaker 3: the er?
Speaker 1: No? They shouldn't be.
Speaker 3: Right, Like, if they are that bad and you're in
Speaker 3: the er, if you're there for a good reason, you're
Speaker 3: not just they're not just Oh well, you know, deal
Speaker 3: with it. Take some mbuprofen and go home. And that's
Speaker 3: with an observable, detectable condition right like you could look
Speaker 3: to find the unruptured appendix. Women who seek medical care
Speaker 3: for a condition that's not objectively observable or measurable or
Speaker 3: easily measurable. And as you went into Aaron Boy, we
Speaker 3: are inadequate at describing and measuring pain. I mean absolutely inadequate.
Speaker 3: These women, these mystery women, are often a source of
Speaker 3: frustration for physicians, and they're dismissively called malingerers, never wells
Speaker 3: et cetera. Concern turns to resentment as nothing seems to
Speaker 3: work and the answer to the problem seems forever out
Speaker 3: of reach. I can't see anything wrong with you, so
Speaker 3: there must not be anything wrong with you. A physician
Speaker 3: sense of self worth shouldn't be tied up in having
Speaker 3: an answer or the right answer. There's an incredible power
Speaker 3: in empathy in saying I don't know, but let's find out.
Speaker 3: So where does that all leave us with endometriosis. We
Speaker 3: have come a long way since the early days of
Speaker 3: hysteria and endometriosis, and the people who have made the
Speaker 3: biggest strides in raising awareness of endometriosis are patient advocacy groups,
Speaker 3: people who have had to become experts in a disease
Speaker 3: that their own physicians often failed to communicate with them about.
Speaker 3: But we haven't come nearly far enough. Stereotypes about endometriosis
Speaker 3: have persisted long after being disproven, such as endometriosis is
Speaker 3: rare in women of color or only happens to women
Speaker 3: who put off marriage and childbearing. These stereotypes, combined with
Speaker 3: the outrageous lack of knowledge about how endometriosis actually works,
Speaker 3: and the tendency for physicians to dismiss or downplay the
Speaker 3: pain experienced by women, these all contribute to the long,
Speaker 3: often excruciating years people have to wait for a diagnosis,
Speaker 3: and still endometriosis is too often made to be about
Speaker 3: a woman's social or gender role. Endometriosis can absolutely impact
Speaker 3: a person's fertility, and for someone who wants or thinks
Speaker 3: they might want to have children, that's hugely important. But
Speaker 3: often fertility is preserved as a default without asking the
Speaker 3: patient whether or not subfertility or infertility would be acceptable
Speaker 3: if it meant reducing the pain. Yea and A two
Speaker 3: thousand and three study found that women who sought out
Speaker 3: doctors because of infertility received a diagnosis of endometriosis in
Speaker 3: half the time that women complaining of menstrual pain did.
Speaker 1: It's not surprising and infuriating, exactly like infertility matters. But
Speaker 1: it shouldn't have to cause infertility to matter.
Speaker 3: Yes, that's exactly frustrating.
Speaker 1: Yeah.
Speaker 3: Yeah, And I think a large part of this is
Speaker 3: due to the fact that menstrual pain is so normalized,
Speaker 3: it's so accepted, and it's reinforced intergenerationally.
Speaker 1: Yep, totally.
Speaker 3: It's not viewed as interesting or worthy of research, despite
Speaker 3: being described for over one hundred years and affecting approximately
Speaker 3: the same number of women as diabetes. En demitriosis gets
Speaker 3: about five percent of the research funds that diabetes gets.
Speaker 1: I almost use diabetes as my expoint. What did you use,
Speaker 1: I'm going with breast cancer. Oh, okay, it's not too far.
Speaker 3: I'm curious. Yeah, but periods aren't fit for polite conversation.
Speaker 3: There's simply the price of being a woman, right, No,
Speaker 3: not true. Periods shouldn't be painful. People don't even need
Speaker 3: to have periods, and if there is pain, it should
Speaker 3: be believed and understood. Let's talk more about periods. Let's
Speaker 3: talk about consistency. Let's talk about the number of times
Speaker 3: you have to empty your diva cup or change your
Speaker 3: pad or change your tampon. What brands do like the best?
Speaker 3: Are there any things that you do that you help
Speaker 3: your period and make you feel better? Like all these
Speaker 3: things so important?
Speaker 1: Ah? Okay ye say it, Aaron.
Speaker 3: I want to end, finally, after this very long history,
Speaker 3: with a quote from of course again Maya Dusonberry from
Speaker 3: her book Doing Harm. Quote. There is always a gap
Speaker 3: between when a symptom begins and when it is medically explained.
Speaker 3: It is unreasonable to expect that doctors, who are fallible
Speaker 3: human beings doing a difficult job can close this gap instantaneously,
Speaker 3: And given that medical knowledge is and probably always will
Speaker 3: be incomplete, they may at times not be able to
Speaker 3: close it at all. But it shouldn't be unreasonable to
Speaker 3: expect that during this period of uncertainty, the benefit of
Speaker 3: the doubt be given to the patient. The default assumption
Speaker 3: be that their symptoms are real, their description of what
Speaker 3: they are feeling in their own bodies be believed, and
Speaker 3: if it is medically unexplained, the burden be on medicine
Speaker 3: to explain it. Such basic trust has been denied to
Speaker 3: women for far too long end quote. So erin, I
Speaker 3: have a feeling I might just get angrier. But can
Speaker 3: you tell me where we stand with endometrios's today?
Speaker 1: I can try Aaron, Okay, maybe we should take a
Speaker 1: break first, well last break break. Almost every single paper
Speaker 1: that I read, and I read a lot of papers,
Speaker 1: universally cited the statistic that ten percent of women of
Speaker 1: child bearing age have endometriosis. And that's it. That's that's it.
Speaker 1: That's the number that I have.
Speaker 3: Ar Okay, it's and these numbers, like where are these
Speaker 3: papers from? And so would those diagnoses have been based
Speaker 3: on surgical.
Speaker 1: Or yeah. I basically only looked at papers from twenty
Speaker 1: ten and sooner, so like within the last ten years, okay,
Speaker 1: and universally that is what they all said. I have
Speaker 1: found no papers that tried to dig deeper and really
Speaker 1: get a sense of like are these numbers changing? Are
Speaker 1: we seeing it more? Et cetera like, And what's really
Speaker 1: frustrating is that none of the papers dug down into
Speaker 1: like what what does that actually mean? Because people who
Speaker 1: are not child bearing age can have endometriosis. Lots of
Speaker 1: people with the uterus that aren't women of child bearing
Speaker 1: age can have endometriosis. And so does that ten percent
Speaker 1: actually mean like ten percent of people with a uterus
Speaker 1: have endometriosis? Or is that number higher because people with
Speaker 1: the uterus maybe had entometriosis when they were younger, and
Speaker 1: now they're older, the symptoms have gone away, but those
Speaker 1: people still count, right, So I don't have an answer
Speaker 1: for you.
Speaker 3: Right, Or what about people who have endometriolesians and might
Speaker 3: not have symptoms that have led them to go seek
Speaker 3: a diagnosis?
Speaker 1: Right? And that's what's so infuriating is that this ten
Speaker 1: percent number assumes that it includes those people. Yeah, and
Speaker 1: so it says that like thirty to fifty percent of
Speaker 1: those ten percent will then have pain from this endometrisis, which, like,
Speaker 1: give me strength.
Speaker 3: I doubt no.
Speaker 1: But statistics also cite that upwards of sixty percent of women,
Speaker 1: by which I assume what they mean is sixty percent
Speaker 1: of people with a uterus that suffer from chronic pelvic
Speaker 1: pain have endometriosis as the likely cause of this pain.
Speaker 1: And those statistics, both of them, no matter how they are,
Speaker 1: are incredibly high, I mean, staggering ten percent. Even if
Speaker 1: we assume that ten percent of people with the uterus
Speaker 1: is the real number ten percent of people with uterus. Okay,
Speaker 1: let's compare that, Aaron, you mentioned diabetes. Almost used that.
Speaker 1: But let's talk about breast cancer, shall we. Thirteen percent
Speaker 1: of women in the US will develop breast cancer. Thirteen percent.
Speaker 1: That's really close to ten percent. We have a whole
Speaker 1: month dedicated to breast cancer, don't we.
Speaker 3: We have one for endometriosis too.
Speaker 1: Oh really, but no one's heard of it.
Speaker 3: Yeah, that's fair.
Speaker 1: But everybody knows about breast cancer. Everybody knows how important
Speaker 1: breast cancer is. Everybody knows somebody who has survived breast cancer,
Speaker 1: or everyone has lost someone from breast cancer, right, and
Speaker 1: so many people have no idea what endometriosis is, let
Speaker 1: alone care enough to I don't know, like encourage funding
Speaker 1: of research for it. Uh huh. And I think I
Speaker 1: think this is now my soapbox. This is for a
Speaker 1: lot of reasons that Aaron, you really kind of focused
Speaker 1: on so many of them, and if we really drill
Speaker 1: down to it, like it comes back to the patriarchy,
Speaker 1: as it always does, but at its core, it also
Speaker 1: is because I think endometriosis is classified in all of
Speaker 1: the literature as a quote benign condition. What So, endometriosis
Speaker 1: is classified as a quote benign condition.
Speaker 3: And so by this means it doesn't kill you.
Speaker 1: So what this is in contrast to is a malignant
Speaker 1: condition such as cancer, And what that means is yes,
Speaker 1: in general, a benign condition is not going to kill
Speaker 1: you if left untreated, at least not directly. Cancers which
Speaker 1: are malignant, invade and metastasized. That is, they spread in
Speaker 1: a way that, if left untreated, is often fatal. Now
Speaker 1: I can see your face. Erin. Endometriosis is really really
Speaker 1: interesting because it in fact does metastasize. It can metastasize
Speaker 1: in a way right. It can be found well outside
Speaker 1: the peritoneal cavity, and by definition it is tissue found
Speaker 1: outside where it's supposed to be. And in the case
Speaker 1: of deeply infiltrating endometriosis, it does invade deeper tissues in
Speaker 1: the same way that cancer can. But endometriosis causes pain,
Speaker 1: causes suffering, causes infertility, and that, my friends, is seen
Speaker 1: as benign. It can in made your bowels and cause obstruction,
Speaker 1: but it usually doesn't. That's uncommon. It can invade your
Speaker 1: bladder or your urroters and cause obstruction. It can cause
Speaker 1: destruction of your urrotors, but it doesn't often. And because
Speaker 1: it's a histologically recognizable tissue type, and because it generally
Speaker 1: quote unquote doesn't invade to the extent that a cancer would,
Speaker 1: and because it generally subsides after menopause, after the withdrawal
Speaker 1: of those hormones, it is quote benign. Okay, it's clearly
Speaker 1: nothing of the.
Speaker 3: Sort, obviously, So in non medical language, benign is like
Speaker 3: not harmful, not bad. So is there a different interpretation
Speaker 3: in metal? I'm just trying to give that a little
Speaker 3: bit of the benefit of the doubt, because this is
Speaker 3: so staggeringly appalling.
Speaker 1: It is it does mean in the medical sense that
Speaker 1: it is not a malignant condition.
Speaker 3: But I mean, does the use of the word benign
Speaker 3: in medicine then influence people who are practicing medicine to
Speaker 3: view a condition as benign as in the popular interpretation
Speaker 3: of the term.
Speaker 1: In my opinion, how can it not. Yeah, when we're
Speaker 1: talking about pain, and we've talked so much about how
Speaker 1: difficult pain is to understand, to explain to, and to
Speaker 1: sympathize with and to empathize with. If your pain perception
Speaker 1: is different than someone else's pain perception or pain sensitization. Right.
Speaker 1: I also do want to point out that the risk
Speaker 1: of eventual ovarian cancer diagnosis, so cancer the malignant condition,
Speaker 1: in people with long standing endometriosis, is two to threefold
Speaker 1: higher than in people without endometriosis. So even though endometriosis
Speaker 1: itself is not a cancerous condition, it's not without its risks. Yeah, right,
Speaker 1: I mean, so far as that goes ah, isn't that
Speaker 1: just fascinating?
Speaker 3: Though?
Speaker 1: So I found that to be a very sort of problematic.
Speaker 1: What I think is likely a big contributor to why
Speaker 1: endometriosis kind of has maybe the rap that it has, right,
Speaker 1: just this classification of it with and it's medically I
Speaker 1: actually found one paper that was kind of like, is
Speaker 1: it correct to call it a benign or is it
Speaker 1: not in terms of the medical definition of the term benign? Okay,
Speaker 1: because it does behave in ways that benign tissue doesn't,
Speaker 1: and yet it doesn't behave the way that a cancer does,
Speaker 1: and it doesn't fit the definition of a cancer. There
Speaker 1: have been a number of new mutations identified in endometrial
Speaker 1: tissue that are associated with cancer, but never enough of them,
Speaker 1: like only one mutation instead of three mutations that would
Speaker 1: then cause it to be a cancer. So it is
Speaker 1: not a cancer, and it does not metastasize the way
Speaker 1: that a cancer does. But it's not normal tissue either.
Speaker 1: So it's an interesting disease in that respect, and we
Speaker 1: have a long way to go to understanding it. I
Speaker 1: was thinking this and feeling this, and then I went
Speaker 1: for a walk today and I was listening to an
Speaker 1: episode of Vox's podcast Unexplainable, and they have an episode
Speaker 1: on endometriosis. It's really great. It has stories from like
Speaker 1: fourteen people who have been living with endometriosis. I recommend
Speaker 1: the listen. But they also had an interview with someone
Speaker 1: who researches endometri it's doctor Lisa Griffiths. She is at
Speaker 1: MIT and runs the Center for Gynopathology Research. Her research
Speaker 1: is super fascinating. Its focuses on tissue engineering, like growing
Speaker 1: endometrial tissue on like chips, and they're trying to develop
Speaker 1: better diagnostic markers that can be used to not only diagnose,
Speaker 1: but then also classify endometriosis into different subtypes, which could
Speaker 1: then theoretically lead to more personalized or targeted treatment options,
Speaker 1: which is amazing. But she also brought up this exact
Speaker 1: same thing that like, the language that we use surrounding
Speaker 1: endometriosis is so important, and she was saying that, like
Speaker 1: her collaborators kept calling it a benign condition, benign condition,
Speaker 1: and she was like, I live with this, she has endometriosis.
Speaker 1: She's like, there's nothing benign about it. Yeah, right, But
Speaker 1: it's that difference between quote medical language and colloquial language, right.
Speaker 1: But it matters, right, and it influences we are all humans,
Speaker 1: even in the medical community. It influences the way that
Speaker 1: we perceive it and then the way that we treat
Speaker 1: people who are living with it. There are a lot
Speaker 1: of people doing research on endometriosis from so many different
Speaker 1: angles because there's so much that we don't know. So
Speaker 1: I already mentioned some fascinating research by the Center for
Speaker 1: Gynopathology Research. There's also other groups like Citizen Endo, which
Speaker 1: is led by doctor Noemi Elhadad at Columbia University and
Speaker 1: their team. Super fascinating are using like citizen science y
Speaker 1: based tools to try and better characterize the symptoms of
Speaker 1: endometriosis to try and bridge the gaps between what clinicians
Speaker 1: know or think they know or think about endometriosis and
Speaker 1: how people who are living with it actually experience endometriosis,
Speaker 1: which I love so much.
Speaker 3: I know, I love I love that so much.
Speaker 1: It's so cool, I think, honestly, in so many ways,
Speaker 1: we're still at the phase. I think we've talked about
Speaker 1: this in a number of different episodes, arin but we're
Speaker 1: at the phase in endometriosis right now where we still
Speaker 1: are trying to just like Garner awareness about this condition. Yeah,
Speaker 1: you know, so I have a feeling after this episode
Speaker 1: maybe a lot of our listeners are going to be
Speaker 1: going to their doctor's offices, like, so, can I ask
Speaker 1: you about endometriosis?
Speaker 3: So I shouldn't be laying in bed all day and
Speaker 3: not able to go to work because of my period?
Speaker 1: Yeah, I mean I didn't even get into like the
Speaker 1: statistics on the number of missed school days, the number
Speaker 1: of missed work days, like the economic and financial is
Speaker 1: in the billions of dollars every year. Yeah, so that
Speaker 1: is endometriosis there, it is.
Speaker 3: Sources.
Speaker 1: Sources.
Speaker 3: I mentioned. I have some papers, but I mentioned the
Speaker 3: four books that I read all great, love them, And
Speaker 3: if you do want to know more about like the
Speaker 3: medical history of endometriosis, who found it, who made this
Speaker 3: development and that development sort of the argument over who
Speaker 3: was the first one to describe it. There is a
Speaker 3: very extensive I'm talking like fifth over fifty pages paper
Speaker 3: by Neshat at All from twenty twelve that goes into
Speaker 3: all of that found that very interesting and in terms
Speaker 3: of the evolutionary biology. Those papers that I mentioned are
Speaker 3: both by Dinsdale at All from twenty twenty one.
Speaker 1: I had a number of papers I already said the
Speaker 1: title of one the epidemiology of Endometriosis is poorly understood,
Speaker 1: No is poorly known as the pathophysiology and diagnosis are unclear.
Speaker 1: That was from Best Practice and Research Clinical of Stetrics
Speaker 1: and Gynecology from twenty twenty one. There was a number
Speaker 1: of other really interesting papers that dig deeper into what
Speaker 1: we know about the mechanisms of endometriosis. I think my
Speaker 1: favorite one was from Nature Reviews Enderchronology in twenty nineteen,
Speaker 1: as well as another one in the Annual Review of
Speaker 1: Pathology Mechanisms of Disease from twenty twenty. We'll post all
Speaker 1: of these sources from this episode and every one of
Speaker 1: our now eighty eight episodes.
Speaker 3: Eighty eight normal season episode.
Speaker 1: Right not including COVID on our website, this podcast will
Speaker 1: kill you dot com.
Speaker 3: We will ye. Thank you again so much, Susie for
Speaker 3: sharing your story with us. I love chatting with you,
Speaker 3: and yeah, we just really appreciate it.
Speaker 1: Yeah, thank you. Thank you also to Blowdmobile for providing
Speaker 1: the music for this episode and all of our one
Speaker 1: hundred plus episodes.
Speaker 3: Thank you to exactly Right Media. We are so proud
Speaker 3: to be a part of this stut work.
Speaker 1: And thank you to you listeners. We make this podcast
Speaker 1: for you, and thanks for sticking through this really long episode.
Speaker 1: I hope you learned something new.
Speaker 3: I hope so too. And a special thank you also
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Speaker 3: Well, until next time, wash your hands
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