Pod Insights This Podcast Will Kill You From the Vault - Endometriosis: Menstrual Backwash (Ep 88) About this episode This episode originally aired on January 11th, 2022.
Chances are you know someone with endometriosis, or perhaps you’re affected yourself. But despite its incredibly high prevalence, endo remains almost criminally understudied, undertreated, and underacknowledged. In this episode, we aim to shed light on many aspects of endometriosis, first by examining the “what” and “how” of this disease: what’s actually going on inside your body with endometriosis and how does it cause the symptoms that it does? Then we turn our sights to the why, exploring not only the possible evolutionary origins of this disease but also the deep historical roots contributing to the struggle many people still face today in obtaining a diagnosis. We discuss how although hysteria is no longer a valid medical diagnosis, it has left its mark on medicine in the form of implicit bias that leaves many people feeling unlistened to and unbelieved. We then wrap up the episode with a look at endometriosis by the numbers and some current research that leaves us feeling slightly more hopeful about the growing awareness of this disease and the need for effective treatments.
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Transcript 19,322 words · 11 speakers
0:01 Speaker 00 This is exactly right.
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2:05 Speaker 04 Hi there. Erin and Erin here. We recorded this episode on endometriosis back in January of 2022, and it was really the first time that we had covered a topic like this.
2:17 Speaker 01 Yeah, this episode has stayed with us, and it's usually our first answer when someone asks us what our favorite episode is.
2:24 Speaker 04 It is. We are especially grateful to Suzy, who provided the firsthand account, which resonated with us and with so many of you.
2:33 Speaker 01 Earlier this year, Suzy's husband reached out to us to let us know that Suzy had passed away in September of 2024 due to complications from cancer.
2:42 Speaker 04 We are heartbroken for her family and her loved ones, and we remain eternally grateful for her vulnerability and willingness to share her story.
2:54 Speaker 05 Hi, my name is Suzy Solaviv. From a pretty young age, I taught myself not to pay a lot of attention to my body. When I was younger, I didn't really have any issues, but after puberty, I started to have pretty bad cramps. I had to go to the bathroom fairly often, and I also found out that I was anemic, and I would occasionally, if I was exercising too hard, start to blackout. Nobody really had a good explanation for this, and nobody really directed me to a doctor or anything, so I just ignored it and moved forward. Lots of other people in my high school had period cramps. Plenty of people were going on birth
3:37 Speaker 05 control to try to control the cramps, and, you know, it was easy enough for me to get past it with a little bit of ibuprofen. I was also raised very religious, and I'm still quite religious, and unfortunately, some American purity culture crept into my upbringing. And so I didn't spend a lot of time thinking about, for lack of a better word, my reproductive parts. Spent a lot of time ignoring them, spent a lot of time pretending nothing was really going on, and generally being embarrassed about it. So I got good at disassociating from those parts of my body.
4:14 Speaker 05 Got married, I ended up having extremely painful sex. And I assumed that it was related to purity culture and I assumed it was psychological. I talked to my PCP about it. I think I got a referral to pelvic floor therapy at one point. But nobody was really concerned. And again, I just decided that it wasn't a very big deal. It was just something that was in my head and I was able to move past it. In our first year of marriage, I got pregnant unexpectedly. And had no problems with the pregnancy, except that it was. I was very nauseous through the entire thing. I was in a lot of pain.
4:55 Speaker 05 And then when I had to have cervical checks, I was caught, I was in tremendous amount of pain. Again, I told them that I thought this was due to growing up with a certain amount of purity culture. And then it was psychological. And nobody questioned it. So after I had my daughter, eventually my period returned and I started having worse and worse cramps. But everybody tells you that after you have a baby, your periods get worse. That's just what people tell you. And so once again, I chose to disassociate from it and ignore it. Some of the painful sex symptoms subsided, others remained. Mostly I was just proceeding with business as usual.
5:36 Speaker 05 Last year, I started having cramps so bad that I would have bladder spasms, which means that I would literally pee my pants with no control. It only happened a few times, thank goodness. But I also ended up starting to have to lie down when I had my cramps. And I was surprised that it wasn't great, but I could generally manage it with like three to four ibuprofen and heat pack. But by the fall, things had escalated and the ibuprofen wasn't cutting it and the heat pack wasn't cutting it. But the killer was when I noticed that there was blood in my stool. I didn't really want to do anything about it, but by January, my sister told me that I had to do something about it. So I went into urgent care.
6:22 Speaker 05 They took some samples and told me that I needed a colonoscopy and that I should not have any ibuprofen until after I had the colonoscopy. Then, on my 35th birthday, I spent the entire day in agony and the worst pain I've ever had because I was experiencing my cramps without any sort of pain blocker. I went in for a colonoscopy at the beginning of March and I didn't expect them to find much of anything because again, I didn't really believe that I had any problems. And I thought to myself, the only problem that I could really have is cancer because cancer runs rampant in my family. Both my father and my brother died of fairly rare cancers, my father of uveal melanoma
7:06 Speaker 05 and my brother of cholangiocarcinoma. So I was a little anxious about the colonoscopy, but not overly so. When I woke up from the colonoscopy, the doctor went to get my husband and took me to his office and sat me down and told me that he had found something and it was very likely to be cancer. So this was incredibly traumatic for me because I was immediately convinced I was going to die. I also delivered the news to my family and told basically everyone I know because I decided that if I did indeed have cancer, I wanted everybody to start praying as quickly as possible. And I maintained that it worked because a week later, the same doctor called me back and told me that the cell samples, to his great shock, had come back not as cancer
7:50 Speaker 05 but as endometriosis. I literally fell to my knees on the ground. I changed doctors. So I went in for a second opinion. I had another, not another colonoscopy, but a flexible sigmoidoscopy. And the doctor told me he thought that I had endometriosis and maybe cancer. And I was referred to the gynecological oncology department. I went in and met with one of the directors of the gynonc department who told me that she thought, yes, there's a possibility of cancer, but mostly it was horrible endometriosis. So she showed me the images that they had taken of my body and the MRI and everything.
8:34 Speaker 05 And you could see that there was something growing out of my left ovary into my colon. And we knew that it was probably in other places, but there is no way to confirm endometriosis except by surgery. So they could not confirm and they thought there was a possibility that there was still cancer. So the other thing that the gynonk told me was that she thought I was gonna have to have a complete hysterectomy and oophorectomy. I had been trying for a second child at this point for almost a year, and this was devastating. But because there was a chance of cancer, I was like, just take it all. I don't want it. Get rid of it. So I had
9:17 Speaker 05 a period farewell party with my friends over Zoom. We drank cranberry juice. We toasted. I wrote a letter to Aunt Flo, sending her out into the worlds. And my surgery was scheduled for May 4. My last period was one of the worst pains I've ever had in my life. The ibuprofen didn't ease it. The heat didn't ease it. I was just lying in bed for two days and was more or less silent screaming. It was horrific. I had surgery. They confirmed stage four endometriosis. I had discussed with my surgeon that I wanted to try to keep my right ovary if possible, because I didn't want to go into surgical menopause at 35. There are a lot of
9:58 Speaker 05 issues associated with going into menopause early, and I wanted to avoid them if I could. Also, I have, I struggle with my mental health. I have depression, anxiety, and I knew that the severe hormonal shift would be very difficult. Although there was less than a 5% chance that they could save my ovary, the surgeon was able to do it. There is still an insignificant amount of endometriosis on my right ovary. It's less than one centimeter. But they were able to remove 14.5 centimeters of colon, which is about the size of a Sharpie,
10:38 Speaker 05 a six-centimeter rectovaginal septum tumor, which, which is about the size of an egg, and a seven-centimeter left ovarian tumor, which is about the size of peach, and the left ovary. I woke up to the very happy news that I still had an ovary, which I did not expect. And about a week later, I got the even happier news that there wasn't cancer. It was just endometriosis. So after the surgery, it took me about three months to feel normal again. The biggest shift since the surgery is that I've had to relearn my body. I have to relearn what feels good and bad, what's painful and what's not.
11:20 Speaker 05 Because I just disassociated from it so much that I had no idea that I was in pain. The emotionally challenging part of this, aside from thinking that I was going to die of cancer for a fairly significant amount of time, was that there's almost no chance of me ever having another biological child. And so I've had to give up on that particular dream because the hope was just too much. But we got a puppy and so that's my replacement baby. I have also learned to be a lot kinder to myself and to trust my body more. I, I accept now that I am living with a chronic illness. I try to take naps a lot.
12:02 Speaker 05 I try to listen to what feels good and what feels bad. But when I stopped to really think about it, the thing that really makes me angry is that I had no idea I had endometriosis before any of this started. It is absurd that no one thought of endometriosis, that I was never presented with any education about endometriosis, that no one in my friend's circle ever talked about endometriosis, even though I found out more and more people have it. And I just feel like I know so little. In a post I wrote on Reddit, I wrote, "I've been a feminist for my entire life without understanding that I've been trapped in a patriarchal pain trap." So, thank you for listening to my story.
13:33 Speaker 04 Thank you so much, Suzy, for taking the time and being willing to share your story. It was, oh, my gosh. I mean,
13:42 Speaker 01 Yeah, I can't. Wow. Thank you.
13:45 Speaker 04 Yeah. Hi, I'm Erin Welsh.
13:48 Speaker 01 And I'm Erin Allman Updike.
13:50 Speaker 04 And this is This Podcast Will Kill You.
13:53 Speaker 01 It's, uh, it's gonna be a big episode, Erin.
13:57 Speaker 04 This is certainly my longest notes.
14:04 Speaker 04 Like by, I think, kind of a bit. So just, yeah, I really kind of, it got away from me. But I'm excited about it.
14:15 Speaker 01 I am too. I have like a lot of feelings about it. So it's gonna be a good one.
14:23 Speaker 04 Yeah. And what exactly is gonna be a good one?
14:26 Speaker 01 Oh, yeah, that's right. Today, we're covering endometriosis.
14:30 Speaker 04 That's right. What even is endometriosis?
14:37 Speaker 04 At the end of this episode, will we have a satisfactory answer to that question?
14:42 Speaker 01 I think we'll have like at least most of a satisfactory answer. We'll have a clinical definition.
14:48 Speaker 04 That's true. That's true. Where does that leave us? Guess we'll find out. Before we get into the nitty gritty of all of that, though, should we do Quarantini?
15:01 Speaker 01 We really should.
15:04 Speaker 04 What are we drinking this week?
15:05 Speaker 01 We're drinking the Chocolate Sist, of course.
15:09 Speaker 04 Oh, boy.
15:11 Speaker 01 Honestly, I think that's a grosser name than our diabetes one.
15:15 Speaker 04 Sweet pea. Yeah.
15:16 Speaker 01 I think this is grosser.
15:18 Speaker 04 Is it grosser than our MRSA one?
15:21 Speaker 01 Hmm. No. Maybe. I don't know.
15:26 Speaker 04 You tell us, listeners.
15:27 Speaker 01 You tell us, listeners.
15:29 Speaker 04 Yeah, what's the grossest one yet? So why are we calling it the Chocolate Sist, though?
15:34 Speaker 01 Yeah, okay, so.
15:37 Speaker 01 A chocolate cyst is like one of the descriptors for an endometrioma, which is when you get endometriosis on your ovary. We're going to get into all of it, but basically sometimes you get these things that look like a little chocolate truffle. Liquidier.
15:56 Speaker 04 Okay, well, definitely garnish this with a chocolate truffle, if you can.
16:03 Speaker 01 So what's in the chocolate cyst?
16:05 Speaker 04 Chocolate liqueur, banana liqueur, coffee liqueur, and cream. And then, of course, garnish, like I said, with a chocolate truffle. And also the placebo Rita is just probably going to be the most decadent, delicious chocolate milkshake you've ever had. Chocolate banana milkshake. Yeah.
16:27 Speaker 04 And you can find our recipe for our Quarantini, as well as our non-alcoholic placebo Rita on our website, thispodcastwillkillyou.com. And we'll also post it to all of our social media channels.
16:40 Speaker 01 On our website, thispodcastwillkillyou.com, you will find everything that you could want to find. We have merch, we have links to Blood Mobile, who provides the music for this podcast. We have transcripts of all of our episodes now, which is thrilling. We've got a bookshop.org affiliate account. We've got a Goodreads list. We have a link to our Patreon. We have, it's all there. It's all there.
17:03 Speaker 04 It's all there and more.
17:05 Speaker 01 With that, Erin, should we just get into the endometrium?
17:12 Speaker 01 Of this episode, Erin?
17:17 Speaker 04 Yes, yes, please, please. Let's take a quick break first.
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19:53 Speaker 01 I can kind of sum up this whole episode with one of the more recent papers that I found. It's the title of a paper from 2021. And the title is simply, "The Epidemiology of Endometriosis is Poorly Known, as the Pathophysiology and Diagnosis Are Unclear." Wow, that's the title. I know, that's the title. Man. Yeah, it's, uh, yeah, we're off to a really good start. Strong. Yep, spoilers, I feel like. Yeah. We're in that title. Okay, so, endometriosis, I know there's probably a good subset of our listenership
20:37 Speaker 01 who has never heard of this, and I am going to get to the official definition really soon, I promise. But some little lead in, okay? Mm-hmm. "Endometriosis is almost always described as a disease of women of childbearing age." That is how it is described. Eh. It's a problem straight off the bat. Mm-hmm. Because this description ignores, number one, anyone who is trans or non-binary that has a uterus or has endometriosis. Number two, it ignores the fact that endometriosis,
21:16 Speaker 01 pain, and endometriosis itself can persist or even sometimes arise after menopause, AKA after, quote, "childbearing." Number three, it also ignores the fact that cases of endometriosis, though very rare, have occurred in people assigned male at birth, which means that a uterus isn't necessarily a prerequisite for the disease.
21:44 Speaker 01 And finally, and I think most importantly, I don't know, they're all important. But by designating this disease to this particular group, quote, women of childbearing age, and Erin, I know you're going to talk a lot more about this.
21:58 Speaker 04 Oh, yeah. Also, I thought is it's also been found in infants.
22:02 Speaker 01 Oh, that's a good point. Yeah. It can definitely be in before childbearing age as well.
22:09 Speaker 04 Everyone can get endometriosis.
22:12 Speaker 01 But by by designating it as a disease of women of childbearing age, it makes it really, really easy in our society to dismiss it as a condition for, oh, young women just have poor pain tolerance, or, oh, this is a women's problem, or even worse, as a normal part of young womanhood. Spoiler alert, it is none of those things.
22:40 Speaker 04 I'm going to be talking so much about this aspect of it.
22:44 Speaker 01 I can't wait.
22:47 Speaker 01 I'm gonna, I'm gonna try and just hit us all with the little that we do know about the biology. So let's actually define the topic of today's episode, shall we?
22:57 Speaker 04 Mm hmm.
22:58 Speaker 01 Okay. So the technical definition of endometriosis is simply the finding of endometrial glands and stroma, which just means endometrial-like tissue outside of the uterus. So what does that mean?
23:15 Speaker 04 Yeah.
23:16 Speaker 01 To talk about that, I want to first talk about my personal favorite organ, the uterus. That's my favorite one. Do you have a favorite organ?
23:25 Speaker 04 I've never thought about it.
23:27 Speaker 01 I do. It's a uterus.
23:29 Speaker 04 No, I don't, I don't think I would need, I would need more time.
23:32 Speaker 01 Okay, that's fine. Okay, so we talked, I think, a fair bit about the uterus in our birth control episode because we talked about the whole menstrual cycle. So I'm just going to briefly recap. The uterus is an organ that's made up of a muscular wall, the myometrium, and an inner layer, the endometrium, that's composed of glandular cells. So there are these cells that basically form into little glands, as well as stroma, or like support cells is how you can think of them, that surround these glandular cells. And this endometrium, this inner lining of the uterus is constantly in flux.
24:12 Speaker 01 This lining is what responds to and changes with the influence of cyclic variation in our hormone levels, most specifically estrogen and progesterone. This is the menstrual cycle that we went over in our birth control episode, which was now a couple of years ago. To recap it, under the influence of an increase in estrogen, oocites in the ovaries begin to mature and the uterus lining, the endometrium proliferates. It grows in number, these stromal cells and these glandular cells. And this is known as the follicular phase or the proliferative phase, where this lining is growing.
24:57 Speaker 01 And the endometrial lining is becoming thicker in preparation for the potential implantation of a blastocyst. Then that peak of estrogen prompts a surge of another hormone that causes the release of an egg, AKA ovulation. And then as that surge of estrogen declines, progesterone, another hormone, begins to increase and the uterus, the endometrium, enters what's known as the secretory phase, where these glands thicken and the arteries within there widen and proliferate in number. And the endometrium undergoes this process, further preparing it for receiving a blastocyst.
25:39 Speaker 01 And then without anything that implants, 14 days go by and progesterone levels sharply decline. And this withdrawal leads to the separation of all these cells from their basal layer and they slough off, AKA menstruation. All of that endometrial tissue then exits through the cervix, which is the opening of the uterus, through the vagina, and that is menstruation. Right? Yep. Right. Okay, so if that all is the menstrual cycle, and that's what's happening inside of a uterus during that menstrual cycle, then what is endometriosis?
26:19 Speaker 01 If it's the finding of these same type of cells that are found inside of a uterus, these endometrial, glandular, and stromal cells.
26:29 Speaker 01 But now they are implanted in tissue outside of the uterus. So instead of being inside the lining of this muscular organ, it's outside on the wall of the organ or on the wall of your belly, which is called the peritoneum, the inside wall of your abdomen. It could even be on your bladder or in your fallopian tubes or on your ovary or on your rectum. It could be anywhere, literally, in your body.
27:02 Speaker 04 Yeah.
27:03 Speaker 01 So then the question is, how does this become a disease or a problem? Like, why is it a problem to have this tissue outside of the uterus? Well, this tissue is still active. It's hormonally sensitive endometrial cells that are undergoing the same proliferative and secretory and then degeneration that happens within the uterus and would end in menses, leaving the body through the vagina. But it's happening in an abnormal location and therefore leading to not only abnormal responses in our body and massive amounts of inflammation,
27:46 Speaker 01 but it's also then not able to leave the body. So this inflammation stays contained within the body. That leads to tissue damage, which can then lead to scarring and fibrosis, which leads to the symptoms of endometriosis, which are chiefly pain, which doesn't begin to describe adequately, like the true symptoms, and also infertility or difficulty conceiving or sustaining a pregnancy. So that was a lot, like all in a very short amount of time. And that's all we know about endometriosis. Just kidding.
28:27 Speaker 01 We know like a tiny bit more than that.
28:28 Speaker 04 Yeah.
28:30 Speaker 01 So that explanation left a lot of open-ended questions. And I think the first one that I would like to be able to answer is how?
28:41 Speaker 01 How does this endometrial tissue end up in a place where endometrium shouldn't be?
28:48 Speaker 01 Tissue types in our body, like different cell types, are actually pretty tightly regulated. So like the tissue that makes up our lining of our abdomen is different than the tissue that makes up the lining of your uterus, which is different than the tissue that makes up your heart or your blood vessels, et cetera, right?
29:06 Speaker 04 Right. And so then, because it's so tightly regulated, shouldn't your body recognize that like, hey, this isn't necessarily in the right spot?
29:17 Speaker 01 It, yeah. And in the case of endometriosis, that's part of the problem, is that your body does recognize it as something that's not in the right spot and therefore causes a lot of inflammation within it, right?
29:30 Speaker 04 Yeah.
29:31 Speaker 01 And so then that leads to part of the problem, or at least we think that maybe that's how it's happening. And with a lot to do with endometriosis, it's hard to know who's the instigator, like which is the cause and which is the effect.
29:45 Speaker 04 Right.
29:46 Speaker 01 Right? But yes, that that can be part of the problem because our body does recognize when a tissue is not in the right place a lot of times. But again, this doesn't happen very often to have a tissue type in a location in the body where it doesn't belong, because in general, as we develop from a single cell all the way into our multicellular human cells, our cells undergo this process of differentiation into all of our specific tissue types in a very characteristic pattern during the process of embryogenesis and development. So all of our cells have very explicit sets of instructions that they follow and explicit
30:29 Speaker 01 influences that they're under in order to develop into these different tissue types in certain areas and not in others, which is why we don't see heart tissue in our bones or brain tissue in our guts, for the most part. So why on earth do we sometimes get endometrial tissue outside of the inside of the uterus?
30:54 Speaker 01 And the short answer is, we don't know.
30:57 Speaker 04 We don't know.
30:59 Speaker 01 We do not know.
31:02 Speaker 01 Let me go through the, quote, prevailing theories, and then maybe Erin, you and I can have some opinions. So the kind of, what's obnoxiously still called the prevailing theory
31:18 Speaker 01 on how this happens, on how endometrial glands end up implanting and then replicating and proliferating outside our uterus, is something called retrograde menstruation, or what do you call it, Erin?
31:30 Speaker 04 As I've been calling it menstrual backwash.
31:33 Speaker 01 Menstrual backwash.
31:35 Speaker 04 Could not, could not for the life of me remember retrograde menstruation.
31:40 Speaker 01 It's a good
31:43 Speaker 01 visual menstrual backwash.
31:45 Speaker 04 Yeah.
31:46 Speaker 01 Essentially, so if you've not recently looked at a picture of a uterus, let me paint you one. So the uterus is connected to fallopian tubes at the top. They look kind of like ears that come off, or maybe little arms. And these fallopian tubes are open at the end. They have these little fimbry, little fingers at the end. And just outside of these fallopian tubes is where our ovaries sit. So during menstruation, all of the endometrial lining and tissue comes out through the cervix, which is the base of the uterus and also the
32:24 Speaker 01 top of the vaginal canal. That is the normal flow of menstrual products. But the top of the uterus, those fallopian tubes are open at the ends. So in fact, there is, in many people who menstruate, menstrual product, AKA endometrial tissue, that goes backwards, and it goes out through those fallopian tubes and enters our peritoneal cavity. That's it.
32:53 Speaker 04 Backwash.
32:53 Speaker 01 Backwash.
32:56 Speaker 01 And it was thought that this certainly must be the way that endometriosis happens. These endometrial tissues are entering our peritoneal cavity. Boom, there you go.
33:09 Speaker 04 I, I think there's a really interesting parallel between this like wandering endometrial tissue concept and the wandering uterus hysteria concept.
33:22 Speaker 01 It's, yeah. It's the same. It totally is.
33:25 Speaker 04 It's very interesting to me.
33:27 Speaker 01 And, you know, there is some evidence in support of this because a sizable portion of endometrial implants occur in areas where this menstrual backwash, this retrograde menstruation, would end up. And in a lot of people where they have looked at, does this person with endometriosis have retrograde menstruation, they have found, yes, they do. And so there's a correlation there. But as it turns out, this is very common and happens in at least, if not more than about 40% of people with the uterus who menstruate, pretty much every time they menstruate to varying degrees.
34:11 Speaker 04 Right.
34:11 Speaker 01 So it doesn't explain why some people then go on to develop endometriosis and others don't. It also doesn't explain how endometriosis can happen in people without a uterus to begin with, which again is incredibly rare, but has happened. And it doesn't explain how endometrial cells can end up outside of the abdominal cavity entirely, which it can.
34:40 Speaker 04 Right.
34:40 Speaker 01 You can get endometriosis in the diaphragm, in the thorax, in the lungs.
34:45 Speaker 04 Uh huh.
34:46 Speaker 01 So this menstrual backwash theory doesn't quite.
34:49 Speaker 04 Some work.
34:50 Speaker 01 Needs some, needs some work.
34:53 Speaker 04 Or it just needs to be discarded for a new one or integrated with another hypothesis.
34:58 Speaker 01 Yeah, and we'll, we'll get there actually because there's an interesting integrative one. So then there is a theory of stem cells of which there are kind of two different schools of thought. So stem cells, I think that I might have touched on this in the HPV episode. I'm not positive. We've talked about them before, but anyways.
35:17 Speaker 04 I don't know.
35:18 Speaker 01 A stem cell is a cell that has the ability to differentiate into other cell types. So like I was saying how when we develop from a single cell into multicellular human, our cells are differentiating, they're becoming like grown up, quote unquote, grown up cells that have a specific job and function. Well, stem cells are kind of like baby cells that have the ability to grow up and become any other type of cell or many other types of cells. So there's a theory that perhaps bone marrow stem cells, which have the ability to differentiate into
36:01 Speaker 01 a number of cell types, might somehow find their way into the peritoneum or the abdominal cavity. And then there they would embed and under certain hormonal influences would differentiate into endometrial cells for some reason.
36:19 Speaker 04 Huh.
36:20 Speaker 01 Yeah, that's one theory.
36:23 Speaker 01 It's not a great one.
36:25 Speaker 04 Yeah, I'm like, how, how does that explain timing of things or?
36:32 Speaker 01 Honestly, Erin, it doesn't.
36:33 Speaker 04 Okay.
36:34 Speaker 01 It's not my favorite of the theories.
36:37 Speaker 01 So another one that's I think at least a little bit more easy to understand is a theory that it's endometrial stem cells. Okay.
36:48 Speaker 04 Right.
36:49 Speaker 01 This is coming a little bit closer. So, and this theory can actually kind of tie into the menstrual backwash theory, but adds on to it a little bit. So in this case, it's not the menstrual backwash per se.
37:05 Speaker 04 I love that we're calling it menstrual backwash now. We've just.
37:08 Speaker 01 We're all in.
37:11 Speaker 01 Okay, so it's not the retrograde menstruation of just any old endometrial cells, but of specifically endometrial stem cells, like the basal cell layers that have the ability to differentiate into the different endometrial cell types. If those maybe are either backwashed or find their way into our bloodstream or our lymphatics, then perhaps those can embed and they already have the ability, they're programmed to differentiate into endometrial cells. So it's logical then that they would be responsive to the same hormonal
37:53 Speaker 01 influences that they would if they were still in the inside of the uterus. Does that make sense?
37:59 Speaker 04 Yeah, that's interesting. And so are there any studies, animal studies or something showing support for this? Or even just like tissue culture studies showing support for this?
38:10 Speaker 01 There are certainly studies that show that these stem cell types exist and can embed and then become, you know, endometrial like tissue.
38:22 Speaker 04 Okay. And how then would those stem cells, so these are like, these would be like the deepest basis layer?
38:31 Speaker 01 Yes, that's my understanding.
38:33 Speaker 04 Okay, so then how do they escape the uterus?
38:36 Speaker 01 Yeah, that's the question that we don't have an answer to.
38:39 Speaker 04 Interesting.
38:40 Speaker 01 Hmm. There is another theory, and this is the selomic metaplasia theory, which is your sebum is the inside of your abdomen. So in this theory, regular old abdominal cells, wherever in your abdomen, just undergo metaplasia. Metaplasia means they develop mutations and then they change. And so instead of being a differentiated, let's say, abdominal wall cell, they de-differentiate and then re-differentiate into endometrial cells.
39:20 Speaker 01 So in this theory, instead of like a baby undifferentiated stem cell that has the potential to become any cell type, you're taking a fully formed adult cell and changing it into an endometrial cell.
39:37 Speaker 04 Yeah. That seems, okay, that seems a little complicated. So currently today, and we're recording this in 2021. I know that like the prevailing hypothesis is still the menstrual backwash thing, but is that, like, what is the timeline for these other hypotheses? And is there, are there any of them that are seeking to dethrone?
40:00 Speaker 01 So
40:01 Speaker 04 That one?
40:02 Speaker 01 The thing is, not really.
40:05 Speaker 04 Okay.
40:06 Speaker 01 Because the thing is, and here's the problem, is that none of these theories in and of themselves, fully or adequately address the question of how exactly endometriosis occurs, right? And they also don't answer the question of why do some people get endometriosis and other people don't? What are the risk factors? And so I think where there is more research being done is trying to understand the second part of that question. Why do some people get endometriosis and others don't? Maybe it is one of these theories that we already have. Maybe it really is menstrual backwash, but it still doesn't answer the question of why
40:47 Speaker 01 40% of people have menstrual backwash and not 40% of people have endometriosis, right?
40:53 Speaker 04 Right.
40:55 Speaker 01 And part of the answer to that question, at least, seems to be genetic. So in a number of genome-wide association studies, which is when you look at someone's entire genome and you try and figure out what's going on, there've been, I think, at least like 10 or 15 different gene loci, so different locations, that have been shown to be associated with endometriosis. So we know that there's a strong genetic component, but knowing that there's like at least 10 or 15 different genes is also maybe not all that helpful because it's hard to know what that means, right?
41:35 Speaker 01 It does seem like all of these gene regions are in some way related to hormonal regulation in some respect. So a lot of this is a hormonally driven disease and really an estrogen dependent disease in a lot of ways. But really, one of the prevailing thoughts is that it is this kind of genetic and epigenetic factors combined with these unknown environmental insults that leads to endometriosis. And endometriosis is associated with a number of other autoimmune disorders.
42:12 Speaker 04 Mm hmm.
42:13 Speaker 01 And that's kind of the thinking with autoimmune disorders as well, right? It's these genetic predispositions and some kind of environmental influences that combine together to then lead to this disease. It's not satisfying.
42:29 Speaker 04 But it does make sense in that if there's a high level of inflammatory response to this self-tissue, even like in places it shouldn't be, compared to people who may not have as high of a strong, you know, inflammatory response and so might not have a strong symptoms or might not have the development of endometrial lesions or whatever.
42:51 Speaker 01 Exactly.
42:52 Speaker 04 Then that sort of, that kind of goes along with it.
42:54 Speaker 01 Yeah. Especially because while this is, if you look at endometriosis tissue histologically, like under a microscope, it looks just like endometrial tissue. It's histologically, it is endometrial tissue. And in some ways, it does behave in the same way as endometrial tissue inside your uterus, right? It proliferates with estrogen, it degrades, et cetera. But what's different is that outside of the uterus, this endometrial tissue is associated with hugely increased amounts of inflammation. And this we do know.
43:34 Speaker 01 So we know that local inflammation and immune dysregulation is a really big part of the pathogenicity of endometriosis. And this inflammation itself is what then leads to the fibrosis, which leads to these adhesions, which can lead to such significant pain and symptoms.
43:53 Speaker 01 So one way to think of it is that it's all related to the bleeding. Because endometrial proliferation and then degeneration leads to so much bleeding, the bleeding itself, like blood itself, is a very, very inflammatory. So the fact that it's trapped somewhere inside your body rather than traveling through the vaginal canal leads to a lot of inflammation, which leads to immune cell infiltration, which et cetera, et cetera, all the way down the line. But it's also not clear that that's the order in which things go. It could be that, do you have underlying inflammatory changes, differences in the
44:33 Speaker 01 way that your inflammatory markers react that then leads to the increased inflammation? Does that make sense?
44:41 Speaker 04 Yeah, so it's like a chicken and the egg, but it's like the chocolate cyst and the inflammation.
44:46 Speaker 01 That's exactly right, Erin.
44:52 Speaker 01 Yeah, so that is what we know about the kind of pathogenicity of endometriosis.
44:59 Speaker 04 I'm still confused, like it's so, yeah.
45:02 Speaker 01 Same.
45:03 Speaker 04 Okay, questions?
45:04 Speaker 01 Okay.
45:05 Speaker 04 Or rather, question. What do these lesions look like? How big do they get? What are the variations in them? How do you know when you have one, et cetera, et cetera?
45:16 Speaker 01 Yeah, so typically, endometriosis is classified into kind of three main subtypes. So there's superficial peritoneal lesions, which means these little endometrial implants that are primarily within the abdominal cavity, either on like the serosa, which is the outside lining of other organs, or on the walls of your abdominal cavity, maybe tucked behind your uterus or up on the front, anywhere really. But they don't extend deeply into the tissues, these superficial lesions. And they're generally small. I don't have an exact size for you, but they don't extend very deeply. That's the first type.
46:01 Speaker 01 Then there are ovarian endometriomas, which is where we got the name for our drink.
46:09 Speaker 01 This basically just means that the endometriosis has implanted on or within the ovary. It's actually thought that it might be like where the eggs pop out. If endometrial implants find their way in there, they then become enclosed. And then they form, they can form these really rather large cysts. And because they are enclosed within kind of ovarian tissue and scar tissue around them, they undergo the same cycles of proliferation and degeneration. And within time, that blood is like contained inside this cyst. And over time, that becomes a very dark, like chocolate color,
46:53 Speaker 01 which is how they got the name chocolate cysts.
46:56 Speaker 04 It's also sounds horribly painful.
46:59 Speaker 01 Mm hmm. Yes. And they can get very, quite large. And then the third subtype is deeply infiltrating endometriosis, literally acronymed as DIE.
47:11 Speaker 04 Mm hmm, mm hmm.
47:13 Speaker 01 Like who came up with that?
47:15 Speaker 04 Mm hmm. Yeah, it's not great.
47:17 Speaker 01 Yep. And this deeply infiltrating form by definition invades into deeper structures, which means instead of just being on the surface of say, your abdominal wall or on the surface of your bladder, it's invading deeper into the muscles of your bladder, into the walls of your rectum, through your urethra for your ureter, for example. Yeah, it can be horrific. And so especially deeply infiltrating endometriosis can cause not only incredible pain, but also can then cause damage to and blockage of really important structures like your colon or your bladder or your ureters.
48:06 Speaker 04 So what is the association with these different stages and pain intensity? Or is there any association or with infertility or subfertility?
48:16 Speaker 01 Yeah, it's a really good question. There's not a solid answer to that. In general, deeply infiltrating lesions are kind of the worst, as well as endometriomas, especially the ovarian endometriomas are also associated with infertility. But the problem is that just by looking at somebody's endometriosis, like during a surgery, for example, you can't tell how bad their symptoms are going to be. So what it looks like doesn't correspond very well with actual symptom severity.
48:55 Speaker 04 Which can be problematic.
48:57 Speaker 01 Very problematic. But of course, the deeply infiltrating endometriosis has the most potential to cause problems in other organs, for example. But in terms of pain, which is kind of the biggest symptom of endometriosis, any of the types can cause pain, or any of the types might not be associated with pain. So in that respect, it's difficult. In terms of pain, Aaron.
49:34 Speaker 04 Yeah.
49:34 Speaker 01 So pain is classically like the hallmark symptom, I guess, of endometriosis. And most classically, it's dysmenorrhea, which is painful periods, which sounds like, oh, doesn't everyone have painful periods? This is not... So period pain, typical period pain, should not be so bad that you are missing school, that you are missing work, that you are laid out in your bed for an entire week because you can't function as a human being. And that's the kind of pain that is often associated with endometriosis.
50:16 Speaker 01 You're not able to function because of how much pain is associated with it. But it's not just with menstruation, especially as these endometrial implants sort of just persist over time.
50:32 Speaker 01 It can also be dyspareunia, which is pain with penetrative sex, which can be hugely impactful on somebody's life. Pain with defecation, dyskesia, painful urination, just pain, pain with everything, pain all the time, chronically. So, but here's the thing about pain. I'm probably not going to do this justice, but I want to just briefly talk about the like neurobiology of pain, if we have time.
51:03 Speaker 04 Let's do it.
51:04 Speaker 01 Long episode?
51:05 Speaker 04 This is gonna be a long episode, but you know, take a break if you need to, come back to it, whatever.
51:10 Speaker 01 Have a chocolate cyst, etc.
51:11 Speaker 04 Yeah, yeah.
51:13 Speaker 01 So, pain at its core, like the definition of pain, I guess, is when specific receptors, nociceptors, are activated and send signals to our brain, which are then interpreted by the brain, processed in certain areas of the brain, and then transmitted, and we then experience pain. Like, that's a really general description of it. But there's a few things about endometriosis pain and about chronic pain in general that I think are really important to kind of understand. First, studies have found that endometriotic implants, this endometriosis in your abdomen,
51:56 Speaker 01 often has higher densities of nerve fibers. So they're more densely innervated than the surrounding tissue. They're also more highly sensitized. So they actually respond at a lower threshold of stimuli, which leads to, both of those things combined, lead to an increase in pain signal transmission to the brain.
52:21 Speaker 04 Yep. It's just like efficiency in signals traveling. They're like, oh, I've gone down this route before. Oh, I know how to get there. Oh, boom. It's this way.
52:29 Speaker 01 Boom, boom, boom. But also, there are literally brain architecture changes that happen with chronic pain.
52:41 Speaker 04 Right.
52:41 Speaker 01 And this is something that we do not fully understand and people are finally just now doing a lot of research on.
52:48 Speaker 04 Finally, just now acknowledging that it might be real.
52:51 Speaker 01 Right, that it's not just psychosomatic, which is what it was thought to be for the longest time. But there are now a lot of really good studies on this, that the brain changes in relation to experiencing chronic pain. And while there aren't as many studies on this in relation to endometriosis-related pain specifically, or to pelvic pain specifically, there are a few, and the ones that do exist, that have looked at people, for example, with dysmenorrhea or very painful periods. People who have chronic pelvic pain have a lower peripheral input at which they experience pain, and a higher activity, higher activation
53:35 Speaker 01 of their central nervous system in response to that pain. They are literally primed by experiencing chronic pain to then experience more pain.
53:45 Speaker 04 Uh huh.
53:46 Speaker 01 And I want to be clear that this is not the same thing as saying like, well, you have a low pain tolerance.
53:53 Speaker 04 Right, right.
53:54 Speaker 01 That's not what this means. This means that in response to pain, your body reacts and changes and experiences a greater amount of pain from the same stimuli as someone else because of these changes to your brain.
54:10 Speaker 04 It makes complete sense, and it's so frustrating that it's like
54:13 Speaker 01 So frustrating.
54:13 Speaker 04 not widely known about, or understood, or taught, or researched.
54:20 Speaker 01 Right. Yep. And it's also not saying, like I said, that this pain is psychological in origin, because it's not. However, it's also really important to point out just how comorbid chronic pain conditions like endometriosis and mood disorders like depression and anxiety are. Because this comorbidity, having these two things together, leads to further exacerbation of the experience of pain because of disruptions that depression or anxiety have on your brain function.
54:57 Speaker 04 Right. And I know that like, there has been a lot of, oh, well, you know, your depression or anxiety is probably causing your, your chronic pain. Instead of, instead of maybe considering that it might be that persistent, never-ending, excruciating, inescapable pain might lead to, I don't know, say, a bit of depression or anxiety? Like, couldn't that be the case?
55:25 Speaker 01 Yeah, yeah. And then both of those things change your brain architecture to make them both worse, like a self-fulfilling prophecy.
55:32 Speaker 04 Uh huh.
55:33 Speaker 01 Yeah, it's not great.
55:35 Speaker 04 Yeah.
55:35 Speaker 01 It's really not great. The other biggest sequelae of endometriosis is infertility or difficulty conceiving. And again, here, we don't know why.
55:48 Speaker 04 Huh, really?
55:49 Speaker 01 Yeah, we don't know if it's because of scar tissue that can form, especially if it's from endometriomas on the ovary, like scarring the ovary or disrupting the number of ovarian follicles that you have left, or if it can cause scarring in the fallopian tubes. Or there's some thought that it's just from how much inflammation exists in the pelvis because of endometriosis? Because again, it's an open cavity between your ovary and your fallopian tube. So, small space, but it's all bathed in the same fluid. And so if that fluid is full of inflammation, then how is that egg supposed to make it safely into the uterus?
56:32 Speaker 04 Right.
56:33 Speaker 01 Right?
56:33 Speaker 04 Huh.
56:33 Speaker 01 So, we don't really know the mechanisms. But endometriosis is strongly associated with difficulty, either getting pregnant or carrying a pregnancy to term, but especially in getting pregnant. And let's talk about something that can have a huge impact on your mental and emotional well-being, especially in a society that often ties a uterus holder's worth to their ability to conceive. Like, that's not small potatoes, that's a big deal.
57:01 Speaker 04 Right, right, yep.
57:02 Speaker 01 Yeah.
57:03 Speaker 04 It is.
57:04 Speaker 01 What else do you want to know about endometriosis, Erin? Because that was a lot.
57:08 Speaker 04 I mean, I would ask about treatment, but...
57:14 Speaker 01 You want me to answer that? I'll answer it.
57:16 Speaker 04 Yeah, okay.
57:18 Speaker 01 Treatment is a mixed bag.
57:21 Speaker 04 Yeah.
57:22 Speaker 01 So, some people with endometriosis respond very well to hormonal birth control, either combined contraceptives or something like an implant or an IUD. And that can be hugely beneficial. It can lighten periods, it can make them stop altogether, it can substantially reduce pelvic pain. But for anywhere from a quarter to a third of people, that doesn't work at all. Or they can't even try it because of other comorbidities or risk factors they might have. Or maybe they want to become pregnant.
57:58 Speaker 04 Or maybe hormonal birth control pills have just never really have messed with other parts of their...
58:03 Speaker 01 Right.
58:04 Speaker 04 Like, day-to-day life.
58:05 Speaker 01 There's a lot of risk factors associated with birth control as well. So, for some, then, the next kind of step can be what are called GnRH, gonadotropin-releasing hormone agonists, which essentially put you into early menopause. That's what they do. They block all of the hormones associated with the menstrual cycle, like, much more completely than combined contraceptives alone. But again, they have their very long list of side effects, like, hot flashes, skin changes, acne, mood changes. These can also affect your bone mineralization and bone density. So, they put you at risk for osteoporosis.
58:50 Speaker 01 And even these don't always work.
58:53 Speaker 01 So, then there's surgery. And surgery sometimes is still cited as the kind of gold standard or the only, quote, "real way," whatever, to diagnose endometriosis.
59:06 Speaker 04 Yeah.
59:07 Speaker 01 The trend is moving away from that, thankfully.
59:09 Speaker 04 Okay.
59:10 Speaker 01 Okay.
59:10 Speaker 04 And how much does that vary country by country?
59:13 Speaker 01 It's a good question that I don't know the answer to.
59:15 Speaker 04 Okay.
59:16 Speaker 01 Yeah. But in general, the consensus in the medical literature is moving away from surgery as a necessary diagnostic step. Because it used to be that you had to have histological proof of endometrial tissue outside of the uterus to call it endometriosis. And the only way you could get that was from surgery.
59:39 Speaker 01 But now we have other methods of being able to identify it, not only just with like clinical history, but also with imaging modalities like MRI and ultrasound, which can help to identify some kinds of endometriosis. But surgery is often also seen as a treatment option. So ablation or excision of the endometrial lesions can help improve pain for a lot of people. But it can also, in some cases, create more inflammation and more adhesions, which can then exacerbate symptoms, or possibly even lead to more endometriosis lesions.
1:00:20 Speaker 01 If we think that it's inflammation that's the driver, rather than vice versa.
1:00:25 Speaker 04 That makes sense, yeah.
1:00:26 Speaker 01 Right? And hysterectomy, or removal of the uterus, with or without removal of the ovaries along with it, used to be seen as curative, used to be done all the time.
1:00:40 Speaker 04 Oh, yeah.
1:00:40 Speaker 01 Still is done a lot. It is not curative, but it is still done sometimes for people. So, yeah. That's the treatment for endometriosis. It's not great. We don't have a lot, and especially when it comes to the pain. Medicine today in 2021 is bad at treating pain, especially chronic pain. We don't have a lot of good options for it. So that part of endometriosis is very difficult. If these other therapies aren't effective. So, it's a bummer, Erin.
1:01:19 Speaker 04 I mean, it's infuriating is what it is.
1:01:25 Speaker 01 Yeah. And that was the longest biology section I've ever done. How?
1:01:31 Speaker 04 There's a lot to unpack, despite the fact that we are still left with so many questions.
1:01:35 Speaker 01 Right. We don't know anything, and yet I talked for an hour. So Erin,
1:01:41 Speaker 01 tell me all about it. How did we get here and why? Why?
1:01:45 Speaker 04 Why? Yeah, I will start on the longest history section right after this break.
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1:04:03 Speaker 04 Before reading about endometriosis, I figured that it would be one of those episodes that followed like a relatively straightforward formula. Like, what evolutionary significance does it have? When was it first written about or first identified as a medical condition? Who discovered it? How has our knowledge about the pathophysiology changed over the last 100 years? And how have we gotten better at treating it?
1:04:29 Speaker 04 Yeah. And it's true, I did come across a lot of information while researching that would answer those questions and fit into that formula. But as I read more, I felt like that wasn't what I wanted to talk about. What I found more compelling, and in my opinion, more important, was how the entire story of endometriosis kind of perfectly encapsulates many aspects of misogyny and gender inequality in medicine, and the implicit and explicit biases that often keep women from getting the health care they need and deserve.
1:05:07 Speaker 04 So that's what I'm going to talk a lot about today.
1:05:11 Speaker 01 Good.
1:05:11 Speaker 04 And before I dive in, I want to briefly discuss the language I'll be using. The story of endometriosis involves aspects of both sex, aka common biological differences between males and females, as well as gender, aka the socially constructed roles that vary between gender and that people identify with. And as you mentioned, Erin, endometriosis can affect people who don't identify as women. It can affect people assigned female, male, or intersex at birth. And its label as a female-only or women's disease can be very damaging and can delay diagnosis even further for those that don't fit the description of a typical endo patient, whatever that means.
1:05:55 Speaker 04 But much of what I'll be talking about today is a gendered issue. It has to do with the way that women are perceived in medicine and how that impacts their treatment. The fact that endometriosis primarily occurs in people assigned female at birth has given rise to many of the social issues and medical disparities surrounding endometriosis. Many of these issues, such as how people experiencing pain are perceived by medical providers, are discussed in the literature and in scientific studies using the terms "men" and "women," without saying whether they mean sex or gender, but generally, we're speaking, referred to cisgender people. This is definitely a huge limitation of these studies and of this discussion as well,
1:06:40 Speaker 04 especially since there are many ways that trans or gender non-binary people are treated differently than cis people in medicine, often in ways that negatively impact their health. And I'm going to try my best to be inclusive and not to ignore the experiences of those people or exclude them from this history, but studies examining those aspects are scarcer.
1:07:02 Speaker 01 Yeah, like horrifically scarcer, as in almost nonexistent.
1:07:07 Speaker 04 Basically, yeah, almost nonexistent. Okay, so, let's dive in. Like I said, I want to talk broadly about medical bias against women and what that means for endometriosis, but in order to do that, I should first tell you a bit about the history of endometriosis.
1:07:27 Speaker 01 Yeah, tell me a little.
1:07:28 Speaker 04 All right, evolution first. Why does endometriosis exist?
1:07:33 Speaker 01 Oh, Erin.
1:07:35 Speaker 04 I mean, I have no idea.
1:07:36 Speaker 01 No one does.
1:07:37 Speaker 04 Let's be clear, but, you know, I have some food for thought, maybe. So as you said, Erin, endometriosis is often associated with infertility or subfertility, and while we don't have a complete grasp on what causes endometriosis, like you said, Erin, heredity does seem to play a part. And many diseases are caused by a mixture of genetic predisposition and environmental factors, and it seems like in the case of endometriosis, I've read that it's about 50% genes and 50% environmental factors.
1:08:09 Speaker 01 Yeah, that's what I read as well.
1:08:11 Speaker 04 Yeah.
1:08:13 Speaker 04 So it seems like it should be selected against at least a little bit just by virtue of the fact that people with endometriosis tend to be less likely to pass on those alleles or the predisposition for endo, but that's not what the numbers seem to show. And as I'm sure you'll talk more about, endometriosis is incredibly common. I've seen estimates from 10 to 15% and those frankly seem like they could be conservative estimates or underestimates because I'm sure many people with endometriosis never get a diagnosis for any number of reasons, such as whether they can afford to see a doctor, to take time off work and find reliable transport to a doctor.
1:08:58 Speaker 04 Or even if they can see a doctor, maybe they're just dismissed or called dramatic. Or maybe they just don't know that debilitating periods aren't normal because periods are a taboo discussion topic.
1:09:09 Speaker 01 I feel like that's such an important one because it's still so common today that people have no idea that they don't have to exist or they shouldn't have to exist in that much pain, like that shouldn't be normal.
1:09:23 Speaker 04 I mean, even periods themselves, do we need to have periods?
1:09:28 Speaker 01 No.
1:09:29 Speaker 04 No, we don't. It's very interesting. Anyway, so, yeah. And then, of course, on top of all of those factors, there are these racial and economic disparities in obtaining a diagnosis that are very frustrating, doesn't really begin to cover it, but yeah. But whether it's 10 to 15% or likely much higher, endometriosis is extremely prevalent. And again, more than it seems like it should be maybe for something that can affect fertility. But remember that it's not just your genes determining whether or not you get endometriosis, it's also environmental factors. And it turns out that endometriosis might not deserve the reputation it has for causing
1:10:14 Speaker 04 infertility. So it seems like in a lot of the literature, an estimate around 30% is often reported, but more recent studies put it actually lower at about 10 to 13%.
1:10:27 Speaker 01 Like of people with endometriosis that will have infertility?
1:10:30 Speaker 04 Mm hmm.
1:10:31 Speaker 01 Got it.
1:10:31 Speaker 04 Right.
1:10:31 Speaker 01 I think most of the, most of the numbers that I saw cited was like of people with infertility, how many of them have endometriosis? Which is a very interesting way to look at the statistics.
1:10:42 Speaker 04 It is, yeah. But yeah, so it seems like this reputation that endometriosis has for basically being a one-to-one infertility is not necessarily
1:10:54 Speaker 01 Yeah.
1:10:54 Speaker 04 the case. And I also read a couple of papers that proposed an evolutionary explanation for endometriosis. So I will admit, I feel a little bit out of my depth here, but I'm going to just attempt to do my best. Essentially, in these papers, which were from 2021, the authors suggested that endometriosis and polycystic ovarian syndrome are opposites. Did you read this paper?
1:11:19 Speaker 01 I saw that paper and I was like, oh, what's this? Beep, beep, beep. Interesting, Erin, interesting.
1:11:25 Speaker 04 Mm hmm, mm hmm. And so Endo and PCOS are at these like two extremes of a spectrum. This is what the author suggested, that is determined by levels of prenatal testosterone exposure, with high prenatal levels equalling PCOS and low prenatal levels equalling endometriosis. So during development, if a fetus is exposed to levels of testosterone that are outside the quote "normal range," certain traits associated with fertility or fecundity are brought to their extremes. And the way that I started thinking about this was like too much of a good thing.
1:12:05 Speaker 04 So individually, these traits might be helpful for fertility, but when you have too many of those traits, or they are expressed too highly, it can be hurtful. So something like uterine contractions. It's great for when you have a fetus with a big head in there, but horrible for when you have menstrual cramps that lay you flat. Or like inflammation, right? High levels, like inflammation is good. It's what keeps us healthy.
1:12:32 Speaker 01 Right.
1:12:33 Speaker 04 Too high levels of inflammation can be really, really bad.
1:12:36 Speaker 01 Yeah.
1:12:37 Speaker 04 So taking all that together, I feel like we can start to see why endometriosis exists and why we see it in fairly prevalent numbers today. So my next question is, do we have more endo today than we've had in the past? How long has endometriosis been around? Endometriosis often gets called a modern disease or a modern epidemic. Did you come across papers describing it that way?
1:13:02 Speaker 01 No, but I'm not surprised.
1:13:03 Speaker 04 Okay. I don't like this.
1:13:06 Speaker 01 Yeah.
1:13:06 Speaker 04 For a number of reasons. First, I don't love the term "modern epidemic" to describe endometriosis because I'm not convinced that we have enough data about historical rates to say whether there's an actual increase, or if it's just that we're more aware of it, so it's diagnosed more often.
1:13:22 Speaker 01 Mm-hmm.
1:13:23 Speaker 04 Second is that calling it a "modern disease" implies that it has emerged only recently, which is untrue. Humans have probably been experiencing endometriosis for millennia, as I'll get into. And some people who defend the use of the term "modern" to describe endometriosis say that it's because it was only defined as a clinical entity within the past 100 to 150 years, and that definitive diagnosis by examining tissue under a microscope was only possible in the last 100 years. So, despite the existence of ancient medical texts describing abnormal bleeding associated with pelvic pain and infertility, those descriptions apparently aren't specific enough to be
1:14:06 Speaker 04 called endometriosis, which I'll grant is fair. Retrospective diagnosis is always a problem.
1:14:13 Speaker 01 Yeah, and there's a lot of things that can cause pelvic pain and abnormal bleeding.
1:14:18 Speaker 04 Absolutely. But I still think it's misleading to call endometriosis "modern."
1:14:23 Speaker 01 I agree.
1:14:24 Speaker 04 Because I feel like by that definition, there are a whole lot of diseases that have likely been with humans for millennia, but quote "discovered" only recently. Does a disease exist only when it's been given a name and a clinical description?
1:14:38 Speaker 01 No.
1:14:39 Speaker 04 No. Of course not.
1:14:41 Speaker 01 No.
1:14:42 Speaker 04 All that said, it is possible that endometriosis is on the rise and we should look to see if it is. And if it is the case, we should obviously try to find out why. But endometriosis is an ancient disease. There are descriptions of painful menstruation, which could be endo, dating back to 1855 BCE from ancient Egypt. And then again, in ancient Greece, in the Hippocratic texts from the 5th and 4th centuries BCE, describing menstrual dysfunction as a cause of disease, with pain and infertility resulting if left untreated, and pregnancy as a possible cure, which, despite not being true, not being a cure,
1:15:27 Speaker 04 is often still recommended today. In fact, I read in one book for this episode that somebody commented on a Facebook page for a group called Endoactive about this. Quote, "My doctor told me having a baby would help my pain. I'm only 11."
1:15:49 Speaker 01 What?
1:15:50 Speaker 04 Uh huh.
1:15:53 Speaker 04 Yeah.
1:15:53 Speaker 01 Oh, no.
1:15:55 Speaker 04 Mm-hmm.
1:15:56 Speaker 01 Oh, no, Erin.
1:15:59 Speaker 04 Yeah, I've been mad for
1:16:02 Speaker 01 Oh, I'm not gonna-
1:16:03 Speaker 04 the time I've been researching this.
1:16:04 Speaker 01 I'm not gonna get over that one.
1:16:06 Speaker 04 I know. I know. Yeah.
1:16:10 Speaker 04 So, in these Hippocratic texts are also the descriptions of the groups most susceptible to these gynecological disorders: women who remained childless, young widows, and virgins who had already menstruated but remained unmarried. Some of which sounds disturbingly familiar to the nickname that was given to endometriosis in the 1960s to the 1980s or so: the, quote, "career woman's disease."
1:16:38 Speaker 01 Oh, my God. I saw that in one paper and I barfed in my mouth.
1:16:43 Speaker 04 I know. Basically, it's like, well, you put off your childbearing duties and rejected your social and gender roles, so this is what you get.
1:16:52 Speaker 01 It's the natural consequence.
1:16:54 Speaker 04 Uh huh. Obviously, the Hippocratic texts didn't refer to these symptoms as endometriosis, or as even like one specific disease, but rather, they were part of what was called hysteria, after the Greek word for the uterus. And I'll talk more about the history of hysteria and its wandering definitions in a bit. But first, I want to wrap up the history of endometriosis, even though they are tied together. So many people who were diagnosed with hysteria probably had endo. Anyway, from those ancient texts describing pain during menstruation and abnormal periods, there doesn't really seem to be a ton of other mentions of what could be endometriosis.
1:17:37 Speaker 04 Not because people weren't experiencing it, but likely because there was, and still is, a huge taboo surrounding menstruation. From Leviticus in the Old Testament, quote, "If a woman has a discharge, and the discharge from her body is blood, she shall be set apart seven days, and whoever touches her shall be unclean until evening." Fast forward to the first time that the word "period" was said on television, like, you know, like menstrual period? 1985.
1:18:13 Speaker 01 No way.
1:18:15 Speaker 04 By Courteney Cox in a tampon commercial.
1:18:17 Speaker 01 Wow.
1:18:19 Speaker 04 Uh huh.
1:18:19 Speaker 01 So I'm sorry, before that, they had tampon commercials without saying the word "period"?
1:18:23 Speaker 04 Or did they have tampon commercials?
1:18:25 Speaker 01 Maybe they didn't have tampons.
1:18:29 Speaker 04 The history of the tampon would be a fascinating one to research.
1:18:32 Speaker 01 There is so, we haven't even done just like regular menstruation.
1:18:35 Speaker 04 I know, I know.
1:18:37 Speaker 01 You know? Anyways.
1:18:39 Speaker 04 Anyways. But we have been conditioned to think of periods, these absolutely normal things, as gross and shameful, when they are neither. And that stigma surrounding periods can lead to this damaging silence, where because we are shamed from talking about periods, because it's not polite conversation, we don't know whether our own periods are normal. Because we don't hear the experiences of others.
1:19:08 Speaker 01 Right.
1:19:09 Speaker 04 The persistent labeling of menstrual periods as a distasteful and shameful subject has profound implications for public health, and it creates enormous inequities for people who menstruate. In most states, tampons, for example, are subject to sales tax. And also in most states, prisons charge inmates for menstrual products.
1:19:30 Speaker 01 Ugh.
1:19:31 Speaker 04 I know. There's just so much. There's so much.
1:19:35 Speaker 01 There's so much.
1:19:36 Speaker 04 But circling back to the history part of this, maybe the reason that endometriosis doesn't show up very much until basically the 1800s is because the people writing medical texts were primarily men, most of whom would have considered it deeply improper, and probably gross, to ask a woman about her periods. It's absolutely possible, and likely, that women discuss periods amongst themselves. And there was probably a great deal of knowledge held by women healers, which was mostly lost as medical licensing laws came into effect, which both prohibited them from practicing—reasonable, licenses are good—and even applying
1:20:19 Speaker 04 to medical school. If you weren't a white, wealthy man, you weren't getting in. But with the increasing popularity of autopsies in the 19th century, people begin linking more and more signs and symptoms of disease with pathological changes in the body. Carl von Rokitansky, whose name you may remember from our pupral fever episode—
1:20:42 Speaker 01 There it is.
1:20:43 Speaker 04 —he was friends with and worked at the same hospital as Semmelweis, and he was like the king of autopsies. He performed an incredible number of autopsies. Rokitansky is usually credited with being the first person to describe endometrial lesions. In the 1860s, he published a paper where he wrote that, quote, "Some fibrous tumors of the uterus contain gland-like structures that resemble endometrial glands," end quote.
1:21:11 Speaker 01 End quote.
1:21:13 Speaker 04 And there was a series of autopsy studies done by other physicians from England, Germany, Holland, and Scotland, also in the 1800s, that went further than Rokitansky to characterize the disease. But it wasn't until 1921 that it was given the name endometriosis by John Sampson, who is an American gynecologist who also did the first systematic study of the disease and proposed a hypothesis that is still the most popular today, the menstrual backwash hypothesis. The papers published by Sampson marked a turning point in the history of endometriosis. They turned it from a medical curiosity into a clinical entity.
1:21:56 Speaker 04 And now that it had a name, it meant that information could be compiled and shared under that name. Receiving a diagnosis itself didn't do much good, similar to today in many cases, and often did harm, because, like you said, Erin, usually a complete removal of the uterus was suggested as the only effective treatment. A couple of decades after Sampson's papers, endometriosis of the lungs, large bowel, colon, rectum, bladder, lymph node, cervix, round ligaments, and so on, had been reported, and physicians began to realize that it was a lot more prevalent than Sampson had thought, who described it as a rare disease.
1:22:38 Speaker 04 Laparoscopic surgery began to be more regularly used for the removal of lesions, starting in around the late 1970s, early 1980s. But frankly, as you went over, not a whole lot of progress seems to have been made since. Like, yes, we know more about endometriosis now than we did 100 years ago, but we're still limited in treatment and hugely lacking in awareness among both medical professionals as well as the general public, which has led in part to the ridiculous delay in endometriosis diagnosis. I mean, I've seen estimates of six to 12 years.
1:23:17 Speaker 01 Yeah, I've seen even higher sometimes, like 10 to 15 years lag between symptoms and diagnosis.
1:23:25 Speaker 04 Right, and this delay is of course not equal across racial and economic groups, with people of color and those in lower economic classes experiencing a much longer delay.
1:23:36 Speaker 04 So what I wanted to take time to explore in more depth was why this damaging diagnostic delay exists. Why is it six to 12 years or 10 to 15 years? Why do we still not seem to know very much about endometriosis? What causes it? How to treat it? Why do some people get it and others don't? And exploring those questions kind of led me into reading more generally about the pervasive mistreatment and undertreatment of women by the medical system. Right off the bat, I want to mention the books that I read for this because I'll probably be quoting from them a lot, one in particular, and they are phenomenal.
1:24:17 Speaker 04 And I learned so much and got so angry along the way. Doing Harm by Maya Dusenberry and Pain and Prejudice by Gabrielle Jackson are both nonfiction books about the systemic issues in medicine and how women are treated. Ask Me About My Uterus by Abby Norman and Giving Up the Ghost by Hilary Mantel are memoirs about endometriosis. Hilary Mantel's book includes a section on her experience with endometriosis. It's not entirely about endo. I loved them all and you should read them all. Okay. So the way that I wanted to structure this discussion is taken directly from Maya Dusenberry's Doing Harm. In this incredible book, she lays out what she calls the
1:25:02 Speaker 04 knowledge gap and the trust gap. The knowledge gap is basically that there isn't as much scientific and medical knowledge about women's bodies and health issues than there is about men's. And this goes all the way from the very basic biomedical research, only including male animals and studies, all the way to women being underrepresented in clinical trials and diseases specific to women receiving less funding. The trust gap is simply that, quote, "women's accounts of their symptoms are too often not believed."
1:25:38 Speaker 01 Yeah.
1:25:39 Speaker 04 The trust gap and the knowledge gap don't operate independently. They reinforce each other to perpetuate the mistreatment and undertreatment of women by the medical system. Quote from Dussenberg, "Women's symptoms are not taken seriously because medicine doesn't know as much about their bodies and health problems, and medicine doesn't know as much about their bodies and health problems because it doesn't take their symptoms seriously." End quote. Dussenberg points out that these issues aren't about a few bad apples in the medical system mistreating women, but rather the unconscious bias that is structurally embedded in medicine.
1:26:20 Speaker 04 So let's explore these two facets in a bit more depth, starting with the knowledge gap. As with any structurally embedded issue we discuss on the podcast, the knowledge gap has deep roots, stemming from the hundreds of years during which women were seen as biologically inferior to men and whose bodies were either not worthy of study or improper to examine. And if they were studied, for instance, by the so-called father of gynecology Marian Sims, who built the profession on the backs of enslaved women, they were essentially tortured, given no anesthesia or pain relief, seen to be subhuman. The ideal baseline that defined what was medically, quote, "normal" or "human" was
1:27:04 Speaker 04 a white adult male, and let's be honest, a wealthy one. This is pretty clear when we look at how menstrual periods were described in medical texts throughout the 1800s as times of ill health. Anytime a woman was either pregnant, menstruating, or in menopause, she was considered unwell and her thoughts scattered and disturbed, which was used in arguments against women being allowed to attend universities, and higher education anyway was thought to atrophy the uterus.
1:27:37 Speaker 01 Atrophy the uterus. Can't have that.
1:27:40 Speaker 04 Absolutely not.
1:27:41 Speaker 01 With all that brain thinking.
1:27:45 Speaker 04 And this perception of periods, of course, didn't just disappear suddenly in 1900. There's even a textbook from the 1970s that describes dysmenorrhea as a symptom of a personality disorder.
1:28:01 Speaker 01 I have no, I don't have any words.
1:28:03 Speaker 04 I know.
1:28:03 Speaker 01 So I'm just gonna keep fish mouthing over here.
1:28:08 Speaker 04 So that just made me think that there are probably some physicians still practicing today that may have been trained on that information.
1:28:17 Speaker 01 Oh, definitely.
1:28:18 Speaker 04 Yeah. Up until at least the 1990s, although you could argue probably successfully that it's still the case today, it wasn't that science knew nothing about women's bodies and health, it was just that they knew a lot less than they did about men's. And let's look at why this is. As I mentioned earlier, the medical licensing laws enacted in the 1800s in effect excluded women and people of color from practicing medicine and contributing to the field. Those that remained were white wealthy men, and so a white male, as the baseline for comparison and the health ideal, became entrenched in medical training and medical knowledge well into the 20th century.
1:29:00 Speaker 04 The 1960s and 1970s saw a great deal of change in terms of medical ethics as things like Tuskegee and thalidomide revealed the enormous failings of informed consent and protections for vulnerable individuals. Many of these developments in drug safety studies were overwhelmingly positive in terms of preventing people from being coerced into unsafe studies and being harmed, but one unintended consequence was when protection turned paternalistic, essentially preventing women from being included in drug trials simply because they were women, or more specifically in the 1977 FDA policy excluding women of, quote, "childbearing potential"
1:29:45 Speaker 01 Mm-hmm.
1:29:46 Speaker 04 from early-phase drug studies. This meant anyone who potentially could get pregnant.
1:29:54 Speaker 01 Right. Anyone with a uterus that was presumed to be working.
1:30:00 Speaker 04 Right.
1:30:01 Speaker 01 Yeah.
1:30:02 Speaker 04 Yeah.
1:30:03 Speaker 01 Any of them.
1:30:04 Speaker 04 Any, any of them. Doesn't matter. Doesn't matter.
1:30:08 Speaker 04 This is a complicated subject, of course, because ensuring that no coercion occurs with informed consent is still tricky, and there are potential risks associated with participating in clinical trials. But also, without the inclusion of women of "childbearing potential" in these studies, how would we know if that drug is safe or effective for them? This is especially problematic and tricky in terms of pregnant people, where it's kind of like a rock and a hard place situation, basically forcing a choice between including pregnant people in clinical trials, which could put the fetus and the person at risk, or, in effect, testing it out on them later in an uncontrolled fashion,
1:30:51 Speaker 04 hoping that the studies showing it safe in people who are not pregnant will mean that it's safe for pregnant people. It's complicated, and I'm not going to go into it here because I just don't have the background knowledge to do so. But one thing that does seem to be clear is that there is under-representation of women and pregnant people in clinical trials.
1:31:16 Speaker 01 That's why all drugs during pregnancy just have these wacky, like, "Well, we don't know if it's safe, but we don't know if it's harmful, so it's probably fine." Like, the scales that you use to define whether or not something is safe in pregnancy are not the same as when you're not pregnant.
1:31:34 Speaker 04 Uh huh. It's far from a perfect system, and it needs a lot of work.
1:31:39 Speaker 01 Yeah.
1:31:40 Speaker 04 But the lack of inclusion of women in medical studies can't all be chalked up to this protective policy. Women were also explicitly excluded simply because they were women. Explanations ranged from, "Well, men and women are so similar that results from an all-men study can be extrapolated to women", to "Women's menstrual cycles and hormonal shifts could confuse the study results."
1:32:09 Speaker 01 You can't have it both ways.
1:32:10 Speaker 04 Yeah, exactly. A, if results from men-only studies could be extrapolated to women, then why weren't there any all-women studies that were extrapolated to men? B, if there were no meaningful differences between men and women, why not include them both in the clinical trial? C, if menstruation could significantly affect the results of a drug trial, why on earth is it not a reason then to include women rather than to exclude them?
1:32:45 Speaker 04 And the answer to all of these? Here's another quote, and I just, I should say that unless I say differently, these quotes are from Doing Harm by Maya Dusenberry. Quote, "In short, studying only one sex was cheaper and easier, and men were the chosen ones because women's bodies were thought to be too complicated."
1:33:05 Speaker 01 Yeah.
1:33:06 Speaker 04 Yeah.
1:33:08 Speaker 04 And there's also the matter that the medical community, which since its infancy had been comprised primarily of men, either consciously or subconsciously, felt that to know the health effects on men was enough. Right? Like, well, we know it on men, so that's, that's good, right? Like-
1:33:27 Speaker 01 Yep, that's all we need.
1:33:28 Speaker 04 And maybe it wasn't this malicious thing. Maybe it just wasn't even thought about. Women didn't, women didn't even enter into the consideration, which is, feels malicious, even though I'm saying it as, it wasn't malicious? I don't know.
1:33:42 Speaker 04 But it wasn't until the late 1980s that enough women were involved in the medical community to bring these enormous gender disparities in medical research to light. At this time, a group of scientists who were women formed what is now known as the Society for the Advancement of Women's Health Research, and they demanded an audit by the Government Accounting Office, the GAO, of the NIH's research efforts to see how well they had stuck to the 1985 policy for the inclusion of women in research.
1:34:14 Speaker 01 Ooh.
1:34:15 Speaker 04 Mm-hmm. This GAO report, which was published in 1990, was staggering. They had done next to nothing.
1:34:25 Speaker 01 Wow.
1:34:25 Speaker 04 In most of the studies that the NIH funded, they couldn't say whether women were included, or if they were, how many.
1:34:34 Speaker 04 So far, I've talked about this more generally, right? More in more descriptive, abstract, women are excluded from studies. So let's get into some more solid examples that illustrate the knowledge gap. For example, there's a famous study called the Baltimore Longitudinal Study of Aging that was started in 1958 and aimed to study, quote, "normal human aging." This was the one that found that a baby aspirin a day could be protective against heart disease, you know, that like now that's conventional wisdom or whatever. Yeah, that study didn't include women, included thousands of men. It didn't include women for 20 years.
1:35:16 Speaker 04 Another large-scale study started in 1982, whose aim was to study the effects of dietary change and exercise on heart disease, included 13,000 men and zero women, despite the fact that heart disease is and was then one of the leading causes of death in women. And then there's this, I think it takes the cake, quoted directly, again, from Doing Harm by Maya Dussenberry. There's a quote and then a quote within a quote, so. The inception of quotes. Quote, "An NIH-supported pilot study from Rockefeller University that looked at how
1:36:00 Speaker 04 obesity affected breast and uterine cancer didn't enroll a single woman."
1:36:07 Speaker 01 I'm sorry, breast and uterine cancer?
1:36:11 Speaker 04 Mm-hmm. It is true that people assigned male at birth do develop breast cancer.
1:36:17 Speaker 01 Uh-huh. And uterine cancer, Erin?
1:36:20 Speaker 04 I don't think so.
1:36:21 Speaker 01 Yeah.
1:36:22 Speaker 04 No.
1:36:22 Speaker 01 You need a uterus for that.
1:36:24 Speaker 04 Mm-hmm.
1:36:24 Speaker 01 Yeah.
1:36:25 Speaker 04 Continuing the quote, "As Representative Snow noted dryly at the congressional hearings, quote, 'Somehow, I find it hard to believe that the male-dominated medical community would tolerate a study of prostate cancer that used only women as research subjects.'" End of the quotes. I can't, that one just echoed in my head for days.
1:36:57 Speaker 04 Uh huh. Nearly anywhere they looked, there was a striking lack of inclusion of women and enormous consequences because of that. Biological differences between people assigned male at birth and people assigned female at birth have historically been used to claim inferiority or superiority while failing to examine the potential health impact of that difference, such as in the way drugs are metabolized, which is impacted by fat distribution and hormones, among other factors. So when women aren't included in drug trials, should we be surprised by the finding that women are quote 50 to 75% more likely than men to have an adverse drug reaction? Like, that's not a surprising finding.
1:37:43 Speaker 04 It's horrible.
1:37:45 Speaker 01 Well, and I also just wonder how many of those adverse drug reactions are often just passed off as being, oh, well, like, not real, you know?
1:37:55 Speaker 04 Uh huh.
1:37:56 Speaker 01 Discounted.
1:37:57 Speaker 04 I'm sure many.
1:37:57 Speaker 01 Not considered.
1:37:58 Speaker 04 Yeah. The dosing of too many drugs has been determined by how it affects men's bodies and also overall, like, people within a certain BMI range.
1:38:10 Speaker 04 Or take chronic pain, for example, which women are known to be disproportionately affected by. And studies indicate that women experience pain differently than men. And again, these studies didn't make the distinction between whether they were talking about sex or gender or whatever. Despite these pain differences, there was a study from 2005 that found that almost 80% of animal pain studies used male animals only. And while the lack of sex analysis in animal studies of all kinds is hugely problematic, it really only captures one aspect of the knowledge gap. These studies don't take into account the gender bias and social factors that influence
1:38:55 Speaker 04 health and are hugely important to examine. The 1990 GAO report did change some things for the better, but we're still not even close to equitable. And many studies simply failed to report any sex or gender analysis of results. There have been suggestions to require the inclusion of such analysis for publication in peer-reviewed journals, but that has been met with some resistance for vague "scientific reasons," whatever that means. But still, even though things are getting better, there is a huge lag time in between when those studies are conducted, to when the results are analyzed and published, to when it becomes presented to the interested field, to then the wider community,
1:39:40 Speaker 04 to then when it becomes included in textbooks, to then when it trickles out to the rest of the public.
1:39:45 Speaker 01 Right.
1:39:46 Speaker 04 Let's illustrate. Picture someone having a heart attack.
1:39:51 Speaker 01 Okay.
1:39:51 Speaker 04 What do they look like? What are they doing? What are the signs and symptoms they seem to be feeling?
1:39:58 Speaker 01 This is a really good example, Erin.
1:40:00 Speaker 04 I love this example. Is it an older man? Probably an older white man? Clutching at his left arm and his chest?
1:40:10 Speaker 01 Salt and pepper hair.
1:40:11 Speaker 04 Mm-hmm, salt and pepper hair. Maybe he's got like a short-sleeved button-up shirt on.
1:40:17 Speaker 01 Definitely.
1:40:18 Speaker 04 Uh-huh, he's like sweating a lot, you know?
1:40:21 Speaker 01 Sweaty, super sweaty. He describes a pressure in the center of his chest which radiates to his left arm and maybe up into his jaw. He clutches at his chest.
1:40:33 Speaker 04 And then collapses.
1:40:34 Speaker 01 He might be gasping for breath.
1:40:36 Speaker 04 Yeah. How many of you pictured a woman with maybe some uncomfortable back pain or flu-like symptoms?
1:40:44 Speaker 01 Hmm.
1:40:46 Speaker 04 Did anyone?
1:40:47 Speaker 01 Anybody? Anybody?
1:40:48 Speaker 04 Maybe. I bet there are some out there, for sure. Because much of the early research on heart attacks was focused on men. That's the search image we have. And it can be deadly. Like when a study from 2000 found that, quote, "young women," and I think by this was meant like under the age of 50, are seven times more likely to be sent home from the hospital in the middle of having a heart attack. Seven times. Those have fatal consequences.
1:41:20 Speaker 01 There, oh God, Erin, there's so many good examples of this. Do you know about the testicular torsion one?
1:41:29 Speaker 04 Uh-uh.
1:41:30 Speaker 01 Testicular torsion, it's when your testicle twists on itself and it can cut off the blood flow. It's an absolute emergency, causes excruciating pain, okay, in the testicles. And they say time is tissue. You have six hours to like diagnose and treat testicular torsion. And people are really good at it. There's a lot of studies in hospitals, like the time from into the emergency room to treatment and like into the OR, it's super short. Ovarian torsion?
1:42:01 Speaker 04 I knew you were gonna say that.
1:42:04 Speaker 01 Same exact thing, okay? Your ovary twists around itself. The time from diagnosis to OR is like, I think, at least twice as long, if not missed entirely. Like, it is staggering.
1:42:19 Speaker 04 Oh, yeah. Yeah, there are, I mean, honestly, just grab bags full of examples about the diagnostic delay for anything. The treatment delay, what kind of treatment that's received. I mean, in general, men are seen as sick while women are seen as stressed. And this, all of these examples that you and I just sort of went through, these are tied to both the knowledge gap and the trust gap. Medical doctors only know what heart attacks look like in men, and they are disinclined to believe that women's symptoms are real. So now let's get into the trust gap.
1:43:03 Speaker 04 If you thought the knowledge gap had deep roots, wait till you hear about the trust gap.
1:43:10 Speaker 04 In order to explain these roots, I'm going to take us through a brief history of hysteria, which was first described in ancient Egypt and got its name from ancient Greece, like I said, from the Greek word for uterus, hystra. What is hysteria? It's basically the idea that a woman's health and mental status is tied directly to her uterus and that all disease in a woman came from the uterus wandering around the body, like literally wandering. But just like these restless uteri, the definition of hysteria has also wandered substantially throughout history. In ancient Greece, in Hippocratic texts from around the 5th century BCE, it seemed to be thought of
1:43:55 Speaker 04 as an organic biological process, one which was likely to happen if marriage was put off for too long or if a woman didn't get pregnant early enough after puberty. In Europe, in the centuries after, throughout the medieval period, the meaning changed and became more spiritually based. And it was thought that the uterus could be inhabited by a demon or evil spirits or possessed via witchcraft. And the uterus became the scapegoat for any disease or complaint that a woman had in hysteria, the catch-all diagnosis.
1:44:28 Speaker 01 The poor uterus, it's so maligned, Erin.
1:44:31 Speaker 04 It is, it is, yeah. It hasn't gotten that much better, but it's gotten somewhat. Yeah.
1:44:40 Speaker 04 And this quality of hysteria as a disease of exclusion, it was useful to physicians, especially as the field of medicine itself evolved. I've talked before on this podcast about how medicine changed substantially when measuring tools began to be introduced and measurements began to be compiled for certain diseases, like blood pressure, you know, what's a normal range, what's not, heart rate, red blood cell count, body temperature, et cetera, all of these things. I think in our sickle cell episode, I talked about how these tools, in addition to medical specialization, led to medicine shifting to be less about the person and more about the body.
1:45:23 Speaker 01 Yeah.
1:45:24 Speaker 04 Or a part of the body. It also led to this important distinction between signs and symptoms. Signs being something that someone who is not the patient can measure or see or feel. Symptoms are the things that only the patient can feel and describe. Signs are objective, symptoms, subjective. As the ability to detect disease signs became more refined, diagnosis increasingly relied on signs rather than symptoms, and a physician could listen less or not at all to their patient and still end up successfully treating them, offering a not so great precedent.
1:46:06 Speaker 04 But it also meant that if there were no signs, or the signs didn't tell them anything, they could and often did disregard the symptoms as hysterical. In the 1800s, Jean-Martin Charcot tried to reclassify hysteria as a neurological disorder rather than a personality flaw, believing that, believing that the ovaries, rather than the uterus, diverted energy from the brain during menstruation, pregnancy, lactation, menopause, ovulation, et cetera, and that the brain drained of all this energy could barely function and left women weak.
1:46:46 Speaker 01 Ugh, poor things, just all the time.
1:46:50 Speaker 04 Placks and lesions that Charcot found around the ovaries and uterus during autopsies confirmed his hypothesis to him, and led to an increase in gynecological surgeries, such as the removal of the ovaries, the uterus, or the clitoris. Surgeries which were permanently damaging, if not fatal, which around 50 to 70% were in like the mid 1800s.
1:47:21 Speaker 04 I'm not going to get into Charcot's ovary presser, but suffice it to say that he carried out extensive medicalized torture on women in asylums to try to confirm his ideas about hysteria.
1:47:38 Speaker 04 From a wandering uterus to demonic possession to a neurological disease, hysteria had one more major transformation to undergo. And it was this final one that left such an enduring mark on how women are perceived in medicine today. Enter Freud.
1:48:04 Speaker 01 One of the worst.
1:48:06 Speaker 04 One of the worst. I'm going to try not to talk about him too much, simply because like-
1:48:10 Speaker 01 Not give him any more airtime.
1:48:12 Speaker 04 Well, I think he's important to talk about because of the damage that he's done.
1:48:16 Speaker 01 I know, I know.
1:48:17 Speaker 04 But I also want to get past him because there's just, there's not enough time in the world to do all of this. So Freud initially jumped on the Charcot train of hysteria as a neurological disorder, but then changed his mind, turning it into a disease that was entirely psychological, often attributed to the underdevelopment of libido or sexuality, or the rejection of feminine values or feminine traits cured through talk therapy. What this did was turn real things that women were experiencing, pain, fatigue, heavy or irregular periods, infertility even,
1:49:02 Speaker 04 into something that she was doing with her mind. It's all in your head. This probably sounds familiar to many people listening today who have maybe been told something similar by a doctor they thought they could trust to listen. Because despite how this story is sometimes told, hysteria didn't disappear after Freud. It may have fallen out of fashion and lost credibility as a medical diagnosis a bit, but number one, it wasn't actually removed from the DSM, the Diagnostic and Statistical Manual of Mental Disorders, until 1980.
1:49:42 Speaker 04 And number two, it never really went away, but was rather repackaged. Out of this umbrella term hysteria came endometriosis, MS, chronic pelvic pain, many autoimmune diseases, somatization, psychogenic illness, medically unexplained symptoms, so many things. Freud's transformation of hysteria into a psychological disorder turned women into unreliable sources on their own body. Essentially, a woman is thought to be lying about her symptoms unless there is observable proof to the contrary, or her symptoms are real but psychogenic,
1:50:27 Speaker 04 unless you can prove otherwise. A gynecology textbook from 1971 said that, quote, "Many women, wittingly or unwittingly, exaggerate the severity of their complaints to gratify neurotic desires," end quote. And in the same textbook, that morning sickness, quote, "may indicate resentment, ambivalence, and inadequacy in women ill-prepared for motherhood."
1:50:56 Speaker 01 Oh.
1:50:57 Speaker 04 As if you needed more things to get angry about, right?
1:51:03 Speaker 01 Oh, I can't rage in front of the microphone.
1:51:09 Speaker 04 It's, it all explains so much about today and how women are treated. Women began being seen as mentally ill rather than physically sick. And throughout the 20th century, the rate of psychogenic illness diagnoses increased enormously. If you were experiencing pain and complained too little, you weren't taken seriously because you weren't experiencing enough pain. But if you complained too much, you were labeled as an exaggerator, as dramatic, as crazy. One proponent of psychogenic diagnoses says that, quote, "The vehemence
1:51:51 Speaker 04 with which many patients insist their illness is medical rather than psychiatric has become one of the hallmarks of the conditions."
1:52:01 Speaker 04 So like, the more you say, "No, this is a real pain," the more likely you are to be diagnosed with a psychogenic illness?
1:52:09 Speaker 01 Yeah, yeah, yeah.
1:52:10 Speaker 04 What? There are scientific studies backing up these implicit gender biases in medicine. And it's not just male doctors that are mistreating women. Women, on average, are more likely to report pain and less likely to receive pain treatment. And this is not just a gendered issue, of course, but a racial one as well, with people of color incredibly undertreated for pain. One study showed that after undergoing a coronary artery bypass graft...
1:52:40 Speaker 01 Oh, my gosh. I hate this study.
1:52:42 Speaker 04 Uh huh. Men were more likely to receive painkillers, while women were more likely to receive sedatives. A study from 2006 by Chiara Monteatall found that when med students and residents were presented with a description of a patient experiencing symptoms, they initially diagnosed these patients similarly, regardless if the patient was described as male or female. But if a stressful life event was added to the description, quote, "Only 15% of medical students or residents diagnosed heart disease in the woman, compared to 56% for the man,
1:53:25 Speaker 04 and only 30% referred the woman to a cardiologist, compared to 62% for the man." That quote's from "Pain and Prejudice." "The explanation given for the woman's symptoms turned from biological to psychological, and there was no difference in the results based on the gender of the doctors." It seems that too often, when physicians meet with a patient, they see the diagnosis in the identity of the patient based on implicit biases built into the medical training system. If you're a woman, it's in your head or your uterus. If you're a black person, you're drug-seeking. If you're trans and you're on hormone therapy, it's because of the hormones.
1:54:09 Speaker 04 If you're fat, it's because you need to lose weight. If you've ever been diagnosed with anxiety or depression, clearly that's what's causing your pelvic pain or your chronic fatigue. It's rarely that endometriosis could be a source of anxiety or depression. Right? Instead, it's depression causing your pelvic pain.
1:54:29 Speaker 04 Take this anecdote paraphrased from Doing Harm. There was an 11-year-old girl who had severe abdominal pain and nausea. She went to the ER. The doctor told her it was menstrual cramps despite the fact that she had not yet gotten her period, ever. The pain didn't go away, so the next day, in agony, she had to be rushed back to the ER. And at this point, her mom, who was a physician, demanded an ultrasound, and they found the largest unraptured appendix that the surgeon had ever removed. Would that have happened if it had been an 11-year-old boy instead of an 11-year-old girl?
1:55:11 Speaker 01 No, probably not.
1:55:12 Speaker 04 Did the doctor even ask, "Have you ever had your period before? Does this feel like period cramps? Like, are period cramps so bad that you should go to the ER? No."
1:55:25 Speaker 01 They shouldn't be.
1:55:26 Speaker 04 Right. Like, if they are that bad and you're in the ER, you're there for a good reason.
1:55:30 Speaker 01 Yep.
1:55:31 Speaker 04 You're not just, they're not just, "Oh, well, you know, deal with it. Take some ibuprofen and go home." And that's with an observable, detectable condition, right? Like, you could look to find the unraptured appendix. Women who seek medical care for a condition that's not objectively observable, or measurable, or easily measurable, and as you went into, Erin, boy, we are inadequate at describing and measuring pain. I mean, absolutely inadequate. These women, these mystery women, are often a source of frustration for physicians, and they're dismissively called malingers, neverwells, et cetera.
1:56:14 Speaker 04 Concern turns to resentment as nothing seems to work, and the answer to the problem seems forever out of reach. "I can't see anything wrong with you, so there must not be anything wrong with you." A physician's sense of self-worth shouldn't be tied up in having an answer or the right answer. There's an incredible power in empathy in saying, "I don't know, but let's find out." So where does that all leave us with endometriosis? We have come a long way since the early days of hysteria and endometriosis. And the people who have made the biggest strides in raising awareness of endometriosis
1:56:55 Speaker 04 are patient advocacy groups, people who have had to become experts in a disease that their own physicians often fail to communicate with them about. But we haven't come nearly far enough. Stereotypes about endometriosis have persisted long after being disproven, such as "endometriosis is rare in women of color" or "only happens to women who put off marriage and childbearing." These stereotypes, combined with the outrageous lack of knowledge about how endometriosis actually works and the tendency for physicians to dismiss or downplay the pain experienced by women, these all contribute to the long, often excruciating years people have to wait for a diagnosis.
1:57:40 Speaker 04 And still, endometriosis is too often made to be about a woman's social or gender role. Endometriosis can absolutely impact a person's fertility. And for someone who wants or thinks they might want to have children, that's hugely important. But often, fertility is preserved as a default, without asking the patient whether or not subfertility or infertility would be acceptable if it meant reducing the pain.
1:58:09 Speaker 01 Yeah.
1:58:10 Speaker 04 And a 2003 study found that women who sought out doctors because of infertility received a diagnosis of endometriosis in half the time that women complaining of menstrual pain did.
1:58:23 Speaker 01 It's not surprising and infuriating.
1:58:26 Speaker 04 Exactly.
1:58:28 Speaker 01 Like infertility matters, but it shouldn't have to cause infertility to matter.
1:58:33 Speaker 04 Yes, that's exactly right.
1:58:36 Speaker 01 It's so frustrating.
1:58:37 Speaker 04 Yeah, yeah. And I think a large part of this is due to the fact that menstrual pain is so normalized, it's so accepted, and it's reinforced intergenerationally.
1:58:49 Speaker 01 Yep, totally.
1:58:50 Speaker 04 It's not viewed as interesting or worthy of research. Despite being described for over 100 years and affecting approximately the same number of women as diabetes, endometriosis gets about 5% of the research funds that diabetes gets.
1:59:07 Speaker 01 I almost used diabetes as my example here.
1:59:11 Speaker 04 What did you use?
1:59:12 Speaker 01 I'm going with breast cancer.
1:59:14 Speaker 04 Oh, okay.
1:59:14 Speaker 01 It's not too far.
1:59:15 Speaker 04 I'm curious, yeah.
1:59:19 Speaker 04 But periods aren't fit for polite conversation. They're simply the price of being a woman, right? No, not true. Periods shouldn't be painful. People don't even need to have periods. And if there is pain, it should be believed and understood. Let's talk more about periods. Let's talk about consistency. Let's talk about the number of times you have to empty your Diva cup or change your pad or change your tampon. What brands do you like the best? Are there any things that you do that you help your period? Make you feel better? Like all these things. So important. Okay.
1:59:54 Speaker 01 Right, yep. Say it, Erin.
1:59:57 Speaker 04 I want to end finally, after this very long history, with a quote from, of course, again, Maya Dusenberry from her book Doing Harm. Quote, "There is always a gap between when a symptom begins and when it is medically explained. It is unreasonable to expect that doctors, who are fallible human beings doing a difficult job, can close this gap instantaneously. And given that medical knowledge is, and probably always will be, incomplete, they may at times not be able to close it at all. But it shouldn't be unreasonable to expect that during this period of uncertainty,
2:00:40 Speaker 04 the benefit of the doubt be given to the patient. The default assumption be that their symptoms are real. Their description of what they are feeling in their own bodies be believed. And if it is medically unexplained, the burden be on medicine to explain it. Such basic trust has been denied to women for far too long." End quote.
2:01:04 Speaker 04 So Erin, I have a feeling I might just get angrier. But can you tell me where we stand with endometriosis today?
2:01:17 Speaker 01 I can try, Erin.
2:01:19 Speaker 04 Okay.
2:01:19 Speaker 01 Maybe we should take a break first?
2:01:21 Speaker 04 One last break.
2:01:22 Speaker 01 One break.
2:01:49 Speaker 01 Almost every single paper that I read, and I read a lot of papers, universally cited the statistic that 10% of women of childbearing age have endometriosis. That's it. That's, that's it. That's the number that I have, Erin.
2:02:14 Speaker 04 Okay.
2:02:14 Speaker 01 It's...
2:02:15 Speaker 04 And these numbers, like, where are these papers from? And so would those diagnoses have been based on surgical identification of tissue?
2:02:25 Speaker 01 Yeah, I basically only looked at papers from 2010 and sooner. So like within the last 10 years.
2:02:34 Speaker 04 Okay.
2:02:34 Speaker 01 And universally, that is what they all said. I have found no papers that tried to dig deeper and really get a sense of like, are these numbers changing? Are we seeing it more, etc. Like, and what's really frustrating is that none of the papers dug down into like, what, what does that actually mean? Because people who are not childbearing age can have endometriosis. Lots of people with a uterus that aren't women of childbearing age can have endometriosis.
2:03:14 Speaker 01 And so does that 10% actually mean like 10% of people with a uterus have endometriosis? Or is that number higher because people with the uterus maybe had entometriosis when they were younger and now they're older, the symptoms have gone away? But those people still count, right? So I don't have an answer for you.
2:03:36 Speaker 04 Right. Or what about people who have endometrial lesions and might not have symptoms that have led them to go seek a diagnosis?
2:03:44 Speaker 01 Right. And that's what's so infuriating is that this 10% number assumes that it includes those people.
2:03:50 Speaker 04 Oh.
2:03:51 Speaker 01 Yeah. And so it says that like 30 to 50% of those 10% will then have pain from this endometriosis, which like, give me strength.
2:04:02 Speaker 04 I doubt, no.
2:04:05 Speaker 01 But statistics also cite that upwards of 60% of women, by which I assume what they mean is 60% of people with a uterus that suffer from chronic pelvic pain have endometriosis as the likely cause of this pain.
2:04:24 Speaker 04 Hmm.
2:04:26 Speaker 01 And those statistics, both of them, no matter how flawed they are, are incredibly high.
2:04:33 Speaker 04 I mean, staggering.
2:04:34 Speaker 01 10%, even if we assume that 10% of people with the uterus is the real number, 10% of people with the uterus, okay, let's compare that. Erin, you mentioned diabetes. Almost used that, but let's talk about breast cancer, shall we?
2:04:53 Speaker 04 Let's.
2:04:54 Speaker 01 13% of women in the US will develop breast cancer. 13%, that's really close to 10%. We have a whole month dedicated to breast cancer, don't we?
2:05:07 Speaker 04 We have one for endometriosis, too.
2:05:10 Speaker 01 Oh, really? But no one's heard of it.
2:05:11 Speaker 04 Yeah, that's fair.
2:05:15 Speaker 01 But everybody knows about breast cancer. Everybody knows how important breast cancer is. Everybody knows somebody who has survived breast cancer, or everyone has lost someone from breast cancer, right? And so many people have no idea what endometriosis is, let alone care enough to, I don't know, like encourage funding of research for it.
2:05:39 Speaker 04 Uh huh.
2:05:40 Speaker 01 And I think, I think, this is now my soapbox. This is for a lot of reasons that Erin, you really kind of focused on so many of them. And if we really drill down to it, like it comes back to the patriarchy as it always does.
2:05:59 Speaker 01 But at its core, it also is because, I think, endometriosis is classified in all of the literature as a quote benign condition.
2:06:10 Speaker 04 What?
2:06:11 Speaker 01 So endometriosis is classified as a quote benign condition.
2:06:16 Speaker 04 And so by this means it doesn't kill you?
2:06:18 Speaker 01 So what this is in contrast to is a malignant condition, such as cancer. And what that means is yes, in general, a benign condition is not going to kill you if left untreated, at least not directly. Cancers, which are malignant, invade and metastasize, that is, they spread in a way that if left untreated, is often fatal. Now, I can see your face, Erin.
2:06:48 Speaker 04 Hmm.
2:06:49 Speaker 01 Endometriosis is really, really interesting because it, in fact, does metastasize. It can metastasize in a way, right? It can be found well outside the peritoneal cavity. And by definition, it is tissue found outside where it's supposed to be. And in the case of deeply infiltrating endometriosis, it does invade deeper tissues in the same way that cancer can. But endometriosis causes pain, causes suffering, causes infertility, and that, my friends, is seen as benign. It can invade your bowels and cause obstruction, but it usually doesn't. That's uncommon.
2:07:34 Speaker 01 It can invade your bladder or your ureters and cause obstruction. It can cause destruction of your ureters. But it doesn't often, and because it's a histologically recognizable tissue type, and because it generally, quote unquote, doesn't invade to the extent that a cancer would, and because it generally subsides after menopause, after the withdrawal of those hormones, it is, quote, benign.
2:08:03 Speaker 04 Okay.
2:08:05 Speaker 01 It's clearly nothing of the sort.
2:08:07 Speaker 04 Obviously. So in, in non-medical language, benign is like, not harmful.
2:08:16 Speaker 01 Exactly.
2:08:17 Speaker 04 Not bad. So is there a different interpretation in med? I'm just trying to give that a little bit of the benefit of the doubt because this is so staggeringly appalling.
2:08:25 Speaker 01 It, it is. It does mean in the medical sense, in that it is not a malignant condition.
2:08:31 Speaker 04 But I mean, does that, does the use of the word benign in medicine then influence people who are practicing medicine to view a condition as benign as in the popular interpretation of the term?
2:08:45 Speaker 01 In my opinion, how can it not? Yeah. When we're talking about pain and we've talked so much about how difficult pain is to understand, to explain, to and to sympathize with and to empathize with if your pain perception is different than someone else's pain perception or pain sensitization. Right. I also do want to point out that the risk of eventual ovarian cancer diagnosis, so cancer, the malignant condition, in people with longstanding endometriosis is two to threefold higher than in people without endometriosis.
2:09:28 Speaker 01 So even though endometriosis itself is not a cancerous condition, it's not without its risks. Yeah. Right? I mean. Insofar as that goes.
2:09:42 Speaker 01 Isn't that just fascinating, though? So I found that to be a very sort of problematic, what I think is likely a big contributor to why endometriosis kind of has maybe the rap that it has, right? Just this classification of it with and it's medically, I actually found one paper that was kind of like, is it correct to call it a benign or is it not in terms of the medical definition of the term benign? Okay. Because it does behave in ways that benign tissue doesn't, and yet it doesn't behave the way that a cancer does. And it doesn't fit the definition of a cancer.
2:10:27 Speaker 01 There have been a number of new mutations identified in endometrial tissue that are associated with cancer, but never enough of them, like only one mutation instead of three mutations that would then cause it to be a cancer.
2:10:45 Speaker 01 So it is not a cancer and it does not metastasize the way that a cancer does, but it's not normal tissue either. So it's an interesting disease in that respect and we have a long way to go to understanding it.
2:11:04 Speaker 01 I was thinking this and feeling this and then I went for a walk today and I was listening to an episode of Vox's podcast Unexplainable and they have an episode on endometriosis. It's really great. It has stories from like 14 people who have been living with endometriosis. I recommend the listen, but they also had an interview with someone who researches endometriosis. It's Dr. Lisa Griffiths. She is at MIT and runs the Center for Gyno Pathology Research. Her research is super fascinating. It focuses on tissue engineering, like growing endometrial tissue on like chips.
2:11:44 Speaker 01 And they're trying to develop better diagnostic markers that can be used to not only diagnose, but then also classify endometriosis into different subtypes, which could then theoretically lead to more personalized or targeted treatment options, which is amazing. But she also brought up this exact same thing, that like the language that we use surrounding endometriosis is so important. And she was saying that like her collaborators kept calling it a benign condition, benign condition. And she was like, I live with this. She has endometriosis. She's like, there's nothing benign about it.
2:12:22 Speaker 04 Yeah.
2:12:22 Speaker 01 Right? But it's that difference between quote, medical language and colloquial language.
2:12:29 Speaker 04 Right.
2:12:30 Speaker 01 But it matters, right?
2:12:31 Speaker 04 It matters.
2:12:31 Speaker 01 And it influences, we are all humans, even in the medical community. It influences the way that we perceive it and then the way that we treat people who are living with it.
2:12:42 Speaker 01 There are a lot of people doing research on endometriosis from so many different angles because there's so much that we don't know. So I already mentioned some fascinating research by the Center for Gyna Pathology Research. There's also other groups like Citizen Endo, which is led by Dr. Noemi El Hadad at Columbia University, and their team, super fascinating, are using like citizen sciency-based tools to try and better characterize the symptoms of endometriosis, to try and bridge the gaps between what clinicians know or think they know or think about endometriosis, and how people who are living with it actually experience endometriosis, which I love so much.
2:13:27 Speaker 04 I know. I love, I love that project so much. It's so cool.
2:13:30 Speaker 01 I think, honestly, in so many ways, we're still at the phase, and I think we've talked about this in a number of different episodes, Erin, but we're at the phase in endometriosis right now where we still are trying to just like garner awareness about this condition.
2:13:46 Speaker 04 Yeah.
2:13:47 Speaker 01 You know, so I have a feeling after this episode, maybe a lot of our listeners are gonna be going to their doctor's offices like, so, can I ask you about endometriosis?
2:13:59 Speaker 04 So, I shouldn't be laying in bed all day, not able to go to work because of my period?
2:14:05 Speaker 01 Yeah. I mean, I didn't even get into like the statistics on the number of missed school days, the number of missed workdays, like the economic and financial burden is in the billions of dollars every year.
2:14:18 Speaker 04 Yeah.
2:14:19 Speaker 01 So, that is endometriosis.
2:14:24 Speaker 04 There it is. Sources?
2:14:27 Speaker 01 Sources.
2:14:30 Speaker 04 Um, I mentioned, I have some papers, but I mentioned the four books that I read, all great, love them. And if you do want to know more about like the medical history of endometriosis, who found it, who made this development and that development, sort of the argument over who was the first one to describe it, there is a very extensive, I'm talking like fif- over 50 pages, paper by Nez Hatetall from 2012 that goes into all of that. I found that very interesting. And in terms of the evolutionary biology, those papers that I mentioned are both by Dinsdale et al. from 2021.
2:15:06 Speaker 01 I had a number of papers. I already said the title of one, "The epidemiology of endometriosis is poorly understood," no, "is poorly known as the pathophysiology and diagnosis are unclear." That was from Best Practice and Research Clinical Obstetrics and Gynecology from 2021. There was a number of other really interesting papers that dig deeper into what we know about the mechanisms of endometriosis. I think my favorite one was from Nature Reviews Endocrinology in 2019, as well as another one in the Annual Review of Pathology Mechanisms of Disease from 2020. We'll post all of these sources
2:15:47 Speaker 01 from this episode and every one of our now eighty-eight?
2:15:53 Speaker 04 Eighty-eight?
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2:15:54 Speaker 04 Eighty-eight normal season episodes.
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