WEBVTT - From the Vault - Endometriosis: Menstrual Backwash (Ep 88)

0:00:00.400 --> 0:00:03.840
<v Speaker 1>Hi, There, Erin and Aaron here. We recorded this episode

0:00:03.840 --> 0:00:08.240
<v Speaker 1>on endometriosis back in January of twenty twenty two, and

0:00:08.480 --> 0:00:10.639
<v Speaker 1>it was really the first time that we had covered

0:00:10.640 --> 0:00:11.440
<v Speaker 1>a topic like this.

0:00:11.760 --> 0:00:14.760
<v Speaker 2>Yeah, this episode has stayed with us and it's usually

0:00:14.800 --> 0:00:17.320
<v Speaker 2>our first answer when someone asks us what our favorite

0:00:17.360 --> 0:00:19.040
<v Speaker 2>episode is it is.

0:00:19.880 --> 0:00:23.160
<v Speaker 1>We are especially grateful to Susie, who provided the first

0:00:23.200 --> 0:00:26.680
<v Speaker 1>hand account which resonated with us and with so many

0:00:26.720 --> 0:00:26.960
<v Speaker 1>of you.

0:00:27.720 --> 0:00:30.520
<v Speaker 2>Earlier this year, Susie's husband reached out to us to

0:00:30.600 --> 0:00:33.440
<v Speaker 2>let us know that Susie had passed away in September

0:00:33.479 --> 0:00:36.280
<v Speaker 2>of twenty twenty four due to complications from cancer.

0:00:37.120 --> 0:00:40.120
<v Speaker 1>We are heartbroken for her family and her loved ones,

0:00:40.880 --> 0:00:45.160
<v Speaker 1>and we remain eternally grateful for her vulnerability and willingness

0:00:45.200 --> 0:00:48.479
<v Speaker 1>to share her story.

0:00:48.680 --> 0:00:52.479
<v Speaker 3>Hi. My name is Susie sol Aviv. From a pretty

0:00:52.520 --> 0:00:55.520
<v Speaker 3>young age, I taught myself not to pay a lot

0:00:55.560 --> 0:00:59.240
<v Speaker 3>of attention to my body. When I was younger, I

0:00:59.240 --> 0:01:02.640
<v Speaker 3>didn't really have any issues, but after puberty, I started

0:01:02.640 --> 0:01:05.760
<v Speaker 3>to have pretty bad cramps. I had to go to

0:01:05.840 --> 0:01:09.560
<v Speaker 3>the bathroom fairly often, and I also found out that

0:01:09.600 --> 0:01:12.200
<v Speaker 3>I was anemic, and I would occasionally if I was

0:01:12.240 --> 0:01:16.800
<v Speaker 3>exercising too hard, start to black out. Nobody really had

0:01:16.840 --> 0:01:19.760
<v Speaker 3>a good explanation for this, and nobody really directed me

0:01:20.000 --> 0:01:24.399
<v Speaker 3>to a doctor or anything. So I just ignored it

0:01:24.520 --> 0:01:27.600
<v Speaker 3>and moved forward. Lots of other people in my high

0:01:27.600 --> 0:01:31.440
<v Speaker 3>school had period cramps, Plenty of people were going on

0:01:31.480 --> 0:01:34.760
<v Speaker 3>birth control to try to control the cramps, and you know,

0:01:34.840 --> 0:01:36.800
<v Speaker 3>it was easy enough for me to get past it

0:01:36.800 --> 0:01:40.120
<v Speaker 3>was a little bit of ybuprofen. I was also raised

0:01:40.440 --> 0:01:44.920
<v Speaker 3>very religious, and I'm still quite religious, and unfortunately, some

0:01:45.280 --> 0:01:50.480
<v Speaker 3>American purity culture crept into my upbringing, and so I

0:01:50.480 --> 0:01:53.720
<v Speaker 3>didn't spend a lot of time thinking about, for lack

0:01:53.760 --> 0:01:56.760
<v Speaker 3>of a better word, my reproductive parts. Spent a lot

0:01:56.760 --> 0:02:00.560
<v Speaker 3>of time ignoring them, spent a lot of time nothing

0:02:00.640 --> 0:02:03.720
<v Speaker 3>was really going on, and generally being embarrassed about it.

0:02:03.800 --> 0:02:07.040
<v Speaker 3>So I got good at disassociating from those parts of

0:02:07.080 --> 0:02:10.960
<v Speaker 3>my body. After I got married, I ended up having

0:02:11.160 --> 0:02:16.480
<v Speaker 3>extremely painful sex, and I assumed that it was related

0:02:16.480 --> 0:02:19.360
<v Speaker 3>to purity culture, and I assumed it was psychological. I

0:02:19.400 --> 0:02:22.919
<v Speaker 3>talked to my PCP about it. I think I got

0:02:22.919 --> 0:02:26.160
<v Speaker 3>a referral to pelvic floor therapy at one point, but

0:02:26.240 --> 0:02:29.800
<v Speaker 3>nobody was really concerned and again, I just decided that

0:02:29.840 --> 0:02:32.400
<v Speaker 3>it wasn't a very big deal. It was just something

0:02:32.440 --> 0:02:34.200
<v Speaker 3>that was in my head, and I was able to

0:02:34.240 --> 0:02:37.200
<v Speaker 3>move past it. In our first year of marriage, I

0:02:37.240 --> 0:02:42.480
<v Speaker 3>got pregnant unexpectedly and had no problems with the pregnancy

0:02:43.000 --> 0:02:46.760
<v Speaker 3>except that it was I was very nauseous through the

0:02:46.919 --> 0:02:50.320
<v Speaker 3>entire thing. I was in a lot of pain, and

0:02:50.360 --> 0:02:53.200
<v Speaker 3>then when I had to have cervical checks, I was

0:02:53.200 --> 0:02:56.640
<v Speaker 3>a tremendous amount of pain. Again, I told them that

0:02:56.760 --> 0:02:58.400
<v Speaker 3>I thought this was due to growing up with a

0:02:58.400 --> 0:03:01.919
<v Speaker 3>certain amount of purity culture and that it was psychological,

0:03:02.720 --> 0:03:06.639
<v Speaker 3>and nobody questioned it. So after I had my daughter,

0:03:07.160 --> 0:03:10.520
<v Speaker 3>eventually my period returned and I started having worse and

0:03:10.600 --> 0:03:15.120
<v Speaker 3>worse cramps. But everybody tells you that after you have

0:03:15.160 --> 0:03:18.519
<v Speaker 3>a baby, your periods get worse. That's just what people

0:03:18.560 --> 0:03:21.520
<v Speaker 3>tell you, and so once again I chose to disassociate

0:03:21.600 --> 0:03:24.080
<v Speaker 3>from it and ignore it. Some of the painful sex

0:03:24.120 --> 0:03:28.760
<v Speaker 3>symptoms subsided, others remained. Mostly I was just proceeding with

0:03:28.840 --> 0:03:33.960
<v Speaker 3>business as usual. Last year, I started having cramps so

0:03:34.160 --> 0:03:37.080
<v Speaker 3>bad that I would have bladder spasms, which means that

0:03:37.120 --> 0:03:41.680
<v Speaker 3>I would literally be my pants with no control. It

0:03:41.720 --> 0:03:44.920
<v Speaker 3>only happened a few times, thank goodness, but I also

0:03:45.080 --> 0:03:49.120
<v Speaker 3>ended up starting to have to lie down when I

0:03:49.200 --> 0:03:53.480
<v Speaker 3>had my cramps, and I was surprised that it wasn't great,

0:03:53.480 --> 0:03:55.560
<v Speaker 3>but I could generally manage it with like three to

0:03:55.600 --> 0:04:00.800
<v Speaker 3>four ibuprofen and heat pack. But by the fall things

0:04:00.800 --> 0:04:03.760
<v Speaker 3>had escalated and the ibuprofen wasn't cutting it and the

0:04:03.800 --> 0:04:06.720
<v Speaker 3>heat pack wasn't cutting it, but the killer was when

0:04:06.720 --> 0:04:09.400
<v Speaker 3>I noticed that there was blood in my stool. I

0:04:09.440 --> 0:04:12.160
<v Speaker 3>didn't really want to do anything about it, but by January,

0:04:12.200 --> 0:04:14.360
<v Speaker 3>my sister told me that I had to do something

0:04:14.400 --> 0:04:18.240
<v Speaker 3>about it, so I went into urgent care. They took

0:04:18.279 --> 0:04:20.880
<v Speaker 3>some samples and told me that I needed a colonoscopy

0:04:20.920 --> 0:04:23.880
<v Speaker 3>and that I should not have any ibuprofen until after

0:04:23.880 --> 0:04:27.960
<v Speaker 3>I had the colonoscopy. Then, on my thirty fifth birthday,

0:04:28.000 --> 0:04:30.880
<v Speaker 3>I spent the entire day in agony and the worst

0:04:30.960 --> 0:04:33.880
<v Speaker 3>pain I've ever had because I was experiencing my cramps

0:04:34.880 --> 0:04:39.359
<v Speaker 3>without any sort of pain blocker. I went in for

0:04:39.400 --> 0:04:43.279
<v Speaker 3>a colonoscopy at the beginning of March, and I didn't

0:04:43.320 --> 0:04:46.839
<v Speaker 3>expect them to find much of anything, because again I

0:04:46.880 --> 0:04:50.160
<v Speaker 3>didn't really believe that I had any problems and I

0:04:50.200 --> 0:04:52.160
<v Speaker 3>thought to myself, the only problem that I could really

0:04:52.200 --> 0:04:55.919
<v Speaker 3>have is cancer, because cancer runs rampant in my family.

0:04:56.480 --> 0:04:59.520
<v Speaker 3>Both my father and my brother died of fairly rare cancers,

0:04:59.520 --> 0:05:04.560
<v Speaker 3>my father viuvial melanoma and my brother of colangiocarsonoma. So

0:05:04.640 --> 0:05:07.640
<v Speaker 3>I was a little anxious about the colonoscopy, but not overly.

0:05:07.720 --> 0:05:11.200
<v Speaker 3>So when I woke up from the colonoscopy, the doctor

0:05:11.400 --> 0:05:13.240
<v Speaker 3>went to get my husband and took me to his

0:05:13.320 --> 0:05:16.440
<v Speaker 3>office and sat me down and told me that he

0:05:16.480 --> 0:05:18.880
<v Speaker 3>had found something and it was very likely to be cancer.

0:05:19.680 --> 0:05:22.320
<v Speaker 3>So this was incredibly traumatic for me because I was

0:05:22.320 --> 0:05:27.040
<v Speaker 3>immediately convinced I was going to die. I also delivered

0:05:27.080 --> 0:05:31.080
<v Speaker 3>the news to my family and told basically everyone I know,

0:05:31.160 --> 0:05:33.400
<v Speaker 3>because I decided that if I did indeed have cancer,

0:05:33.440 --> 0:05:35.920
<v Speaker 3>I wanted everybody to start praying as quickly as possible,

0:05:36.440 --> 0:05:39.279
<v Speaker 3>and I maintained that it worked because a week later,

0:05:39.839 --> 0:05:42.359
<v Speaker 3>the same doctor called me back and told me that

0:05:42.400 --> 0:05:44.880
<v Speaker 3>the cell samples, to his great shock, had come back

0:05:44.920 --> 0:05:48.919
<v Speaker 3>not as cancer but as endometriosis. I literally fell to

0:05:49.000 --> 0:05:53.839
<v Speaker 3>my knees on the ground. I changed doctors, so I

0:05:53.839 --> 0:05:57.000
<v Speaker 3>went in for a second opinion. I had another not

0:05:57.080 --> 0:06:02.640
<v Speaker 3>another colonoscopy, but a flexible sigmoidoscopy, and the doctor told

0:06:02.680 --> 0:06:06.880
<v Speaker 3>me he thought that I had endometriosis and maybe cancer,

0:06:07.440 --> 0:06:12.280
<v Speaker 3>and I was referred to the gynecological oncology department. I

0:06:12.320 --> 0:06:14.600
<v Speaker 3>went in and met with one of the directors of

0:06:14.640 --> 0:06:19.040
<v Speaker 3>the guyinanc department, who told me that she thought, yes,

0:06:19.040 --> 0:06:23.039
<v Speaker 3>there's a possibility of cancer, but mostly it was horrible endometriosis.

0:06:23.640 --> 0:06:27.120
<v Speaker 3>So she showed me the images that they had taken

0:06:27.160 --> 0:06:29.920
<v Speaker 3>of my body in the MRI and everything, and you

0:06:29.960 --> 0:06:32.880
<v Speaker 3>could see that there was something growing out of my

0:06:33.000 --> 0:06:37.400
<v Speaker 3>left ovary into my colon, and we knew that it

0:06:37.440 --> 0:06:40.440
<v Speaker 3>was probably in other places, but there is no way

0:06:40.480 --> 0:06:46.200
<v Speaker 3>to confirm endometriosis except by surgery, so they could not confirm,

0:06:46.640 --> 0:06:48.640
<v Speaker 3>and they thought there was a possibility that there was

0:06:48.680 --> 0:06:53.039
<v Speaker 3>still cancer. So the other thing that the guynanc told

0:06:53.080 --> 0:06:54.440
<v Speaker 3>me was that she thought I was going to have

0:06:54.480 --> 0:06:58.240
<v Speaker 3>to have a complete hysterectopy and eupherectomy. I had been

0:06:58.279 --> 0:07:01.600
<v Speaker 3>trying for a second child point for almost a year

0:07:02.240 --> 0:07:06.000
<v Speaker 3>and this was devastating, but because there was a chance

0:07:06.000 --> 0:07:08.159
<v Speaker 3>of cancer, I was like, just take it all. I

0:07:08.160 --> 0:07:12.080
<v Speaker 3>don't want it, get rid of it. So I had

0:07:12.120 --> 0:07:14.800
<v Speaker 3>a period farewell party with my friends over Zoom. We

0:07:14.880 --> 0:07:17.400
<v Speaker 3>drank cranberry juice, we toasted. I wrote a letter to

0:07:17.400 --> 0:07:20.640
<v Speaker 3>aunt Flow, sending her out into the worlds, and my

0:07:20.800 --> 0:07:25.160
<v Speaker 3>surgery was scheduled for May fourth. My last period was

0:07:25.200 --> 0:07:28.200
<v Speaker 3>one of the worst pains I've ever had in my life.

0:07:28.320 --> 0:07:31.000
<v Speaker 3>The ibuprofen didn't ease it, the heat didn't ease it.

0:07:31.040 --> 0:07:33.640
<v Speaker 3>I was just lying in bed for two days and

0:07:35.000 --> 0:07:36.560
<v Speaker 3>was more or less silent screaming.

0:07:36.600 --> 0:07:37.760
<v Speaker 2>It was horrific.

0:07:38.640 --> 0:07:44.040
<v Speaker 3>I had surgery. They confirmed stage four endometriosis. I discussed

0:07:44.080 --> 0:07:47.000
<v Speaker 3>with my surgeon that I wanted to try to keep

0:07:47.000 --> 0:07:50.200
<v Speaker 3>my rite ovary if possible, because I didn't want to

0:07:50.200 --> 0:07:52.840
<v Speaker 3>go into surgical menopause at thirty five. There are a

0:07:52.880 --> 0:07:56.800
<v Speaker 3>lot of issues associated with going into menopause early, and

0:07:56.880 --> 0:08:00.040
<v Speaker 3>I wanted to avoid them if I could. Also, I

0:08:00.120 --> 0:08:03.560
<v Speaker 3>have I struggle with my mental health. I have depression anxiety,

0:08:04.240 --> 0:08:08.720
<v Speaker 3>and I knew that the severe hormonal shift would be

0:08:08.840 --> 0:08:12.680
<v Speaker 3>very difficult. Although there was less than a five percent

0:08:12.800 --> 0:08:16.560
<v Speaker 3>chance that they could save my ovary, the surgeon was

0:08:16.640 --> 0:08:20.360
<v Speaker 3>able to do it. There is still an insignificant amount

0:08:20.360 --> 0:08:24.040
<v Speaker 3>of endometriosis on my right ovary. It's less than one centimeter,

0:08:25.280 --> 0:08:28.960
<v Speaker 3>but they were able to remove fourteen point five centimeters

0:08:28.960 --> 0:08:32.040
<v Speaker 3>of colon, which is about the size of sharp b

0:08:32.800 --> 0:08:37.720
<v Speaker 3>a six centimeter rectovaginal septum tumor, which which is about

0:08:37.720 --> 0:08:41.440
<v Speaker 3>the size of an egg, and a seven centimeter left

0:08:41.480 --> 0:08:44.240
<v Speaker 3>ovarian tumor, which is about the size of peach. And

0:08:44.280 --> 0:08:47.240
<v Speaker 3>the left ovary. I woke up to the very happy

0:08:47.280 --> 0:08:49.439
<v Speaker 3>news that I still had an ovary, which I did

0:08:49.480 --> 0:08:53.080
<v Speaker 3>not expect, and about a week later I got the

0:08:53.160 --> 0:08:58.360
<v Speaker 3>even happier news that there wasn't cancer, it was just endometriosis.

0:08:59.000 --> 0:09:01.320
<v Speaker 3>So after the surgery, it took me about three months

0:09:01.320 --> 0:09:07.880
<v Speaker 3>to feel normal again. The biggest shift since the surgery

0:09:07.960 --> 0:09:11.240
<v Speaker 3>is that I've had to relearn my body. I have

0:09:11.360 --> 0:09:13.960
<v Speaker 3>to relearn what feels good and bad, what's painful and

0:09:14.000 --> 0:09:18.000
<v Speaker 3>what's not, because I just disassociated from it so much

0:09:18.640 --> 0:09:21.640
<v Speaker 3>that I had no idea that I was in pain.

0:09:22.960 --> 0:09:26.880
<v Speaker 3>The emotionally challenging part of this, aside from thinking that

0:09:26.960 --> 0:09:29.680
<v Speaker 3>I was going to die of cancer for a fairly

0:09:29.800 --> 0:09:33.839
<v Speaker 3>significant amount of time, was that there's almost no chance

0:09:33.880 --> 0:09:36.960
<v Speaker 3>of me ever having another biological child, and so I've

0:09:37.000 --> 0:09:39.640
<v Speaker 3>had to give up on that particular dream because the

0:09:39.679 --> 0:09:43.600
<v Speaker 3>hope was just too much. But we got a puppy,

0:09:43.920 --> 0:09:49.040
<v Speaker 3>and so that's my replacement baby. I have also learned

0:09:49.080 --> 0:09:52.200
<v Speaker 3>to be a lot kinder to myself and to trust

0:09:52.200 --> 0:09:54.920
<v Speaker 3>my body more. I accept now that I am living

0:09:54.920 --> 0:09:57.400
<v Speaker 3>with a chronic illness. I try to take naps a lot,

0:09:57.520 --> 0:10:01.120
<v Speaker 3>I try to listen to what feels good and what

0:10:01.240 --> 0:10:03.960
<v Speaker 3>feels bad. But when I stopped to really think about it,

0:10:04.000 --> 0:10:07.559
<v Speaker 3>the thing that really makes me angry is that I

0:10:07.640 --> 0:10:10.840
<v Speaker 3>had no idea I had endometriosis before any of this started.

0:10:12.559 --> 0:10:17.000
<v Speaker 3>It is absurd that no one thought of endometriosis, That

0:10:17.240 --> 0:10:21.439
<v Speaker 3>I was never presented with any education about endometriosis, that

0:10:21.840 --> 0:10:25.520
<v Speaker 3>no one in my friend's circle ever talked about endometriosis,

0:10:25.559 --> 0:10:27.600
<v Speaker 3>even though I found out more and more people have it,

0:10:28.120 --> 0:10:31.040
<v Speaker 3>and I just feel like I know so little. In

0:10:31.080 --> 0:10:33.079
<v Speaker 3>a post I wrote on Reddit, I wrote, I've been

0:10:33.160 --> 0:10:35.839
<v Speaker 3>a feminist for my entire life without understanding that I've

0:10:35.840 --> 0:10:41.320
<v Speaker 3>been trapped in a patriarchal pain trap. So thank you

0:10:41.360 --> 0:11:27.319
<v Speaker 3>for listening to my story.

0:11:27.960 --> 0:11:31.280
<v Speaker 1>Thank you so much Susie for taking the time and

0:11:31.360 --> 0:11:35.959
<v Speaker 1>being willing to share your story. It was Oh my gosh,

0:11:36.040 --> 0:11:36.559
<v Speaker 1>I mean.

0:11:36.640 --> 0:11:39.200
<v Speaker 2>Yeah, I can't wow, thank you.

0:11:39.760 --> 0:11:40.920
<v Speaker 1>Yeah.

0:11:41.080 --> 0:11:45.040
<v Speaker 2>Hi, I'm Erin Welsh and I'm Erin allman updyke.

0:11:44.840 --> 0:11:47.000
<v Speaker 1>And this is this podcast will kill you.

0:11:48.000 --> 0:11:51.520
<v Speaker 2>It's uh, it's gonna be a big episode. Erin.

0:11:52.280 --> 0:12:01.240
<v Speaker 1>This is certainly my longest notes like by I think

0:12:01.600 --> 0:12:06.360
<v Speaker 1>like kind of a bit so just yeah, I really

0:12:06.440 --> 0:12:09.000
<v Speaker 1>kind of it got away from me. But I'm excited

0:12:09.040 --> 0:12:09.440
<v Speaker 1>about it.

0:12:10.600 --> 0:12:13.000
<v Speaker 2>I am too. I have like a lot of feelings

0:12:13.080 --> 0:12:17.640
<v Speaker 2>about it. So it's going to be a good one.

0:12:17.960 --> 0:12:21.000
<v Speaker 1>Yeah, And what exactly is going to be a good one?

0:12:21.320 --> 0:12:21.440
<v Speaker 3>Oh?

0:12:21.520 --> 0:12:24.880
<v Speaker 2>Yeah, that's right. Today we're covering endometriosis.

0:12:25.440 --> 0:12:32.840
<v Speaker 1>That's right. What even is endometriosis? At the end of

0:12:32.840 --> 0:12:36.079
<v Speaker 1>this episode, will we have a satisfactory answer to that question?

0:12:36.559 --> 0:12:39.800
<v Speaker 2>I think we'll have, like at least most of a

0:12:39.840 --> 0:12:42.679
<v Speaker 2>satisfactory answer, will have a clinical definition.

0:12:43.440 --> 0:12:48.120
<v Speaker 1>That's true, that's true. Where does that leave us? I

0:12:48.120 --> 0:12:50.920
<v Speaker 1>guess we'll find out before we get into the nitty

0:12:50.920 --> 0:12:55.520
<v Speaker 1>gritty of all of that. Though. Should we do quarantining?

0:12:56.280 --> 0:12:57.640
<v Speaker 2>We really should?

0:12:58.679 --> 0:12:59.959
<v Speaker 1>What are we drinking this week?

0:13:00.360 --> 0:13:06.000
<v Speaker 2>We're drinking the chocolate cyst of course. Oh boy, honestly,

0:13:06.160 --> 0:13:09.080
<v Speaker 2>that's I think that's a grosser name than our diabetes

0:13:09.160 --> 0:13:12.320
<v Speaker 2>one sweet Pea. Yeah, I think this is grosser.

0:13:12.840 --> 0:13:15.840
<v Speaker 1>Is it grosser than our MRSA one?

0:13:15.960 --> 0:13:22.240
<v Speaker 2>Mm? No, mah, maybe, I don't know. You tell us listeners,

0:13:22.360 --> 0:13:23.480
<v Speaker 2>You tell us listeners.

0:13:23.840 --> 0:13:27.480
<v Speaker 1>Yeah, what's the grossest one yet? So why are we

0:13:27.559 --> 0:13:29.680
<v Speaker 1>calling it the chocolate cist though? Yeah?

0:13:29.720 --> 0:13:34.920
<v Speaker 2>Okay, so a chocolate cyst is like one of the

0:13:35.080 --> 0:13:41.400
<v Speaker 2>descriptors for an endometrioma, which is when you get endometriosis

0:13:41.400 --> 0:13:43.960
<v Speaker 2>on your ovary. We're gonna get into all of it,

0:13:44.080 --> 0:13:46.920
<v Speaker 2>but basically, sometimes you get these things that look like

0:13:46.960 --> 0:13:49.319
<v Speaker 2>a little chocolate truffle.

0:13:49.800 --> 0:13:55.120
<v Speaker 1>Liquid or Okay, well, definitely garnish this with a chocolate

0:13:55.200 --> 0:13:56.319
<v Speaker 1>truffle if you can.

0:13:57.840 --> 0:13:59.520
<v Speaker 2>So what's in the chocolate cyst?

0:14:00.240 --> 0:14:07.400
<v Speaker 1>Chocolate liqueur, banana liqueur, coffee liqueur, and cream and then

0:14:07.480 --> 0:14:09.920
<v Speaker 1>of course s garnish like I said, with a chocolate truffle.

0:14:10.280 --> 0:14:13.600
<v Speaker 1>And also the placy Burita is just probably going to

0:14:13.600 --> 0:14:17.720
<v Speaker 1>be the most decadent, delicious chocolate milkshake you've ever had,

0:14:18.000 --> 0:14:24.400
<v Speaker 1>chocolate banana milkshake. Yeah. And you can find our recipe

0:14:24.440 --> 0:14:28.600
<v Speaker 1>for our quarantini as well as our non alcoholic Placyburta

0:14:28.600 --> 0:14:31.680
<v Speaker 1>on our website. This podcast willkill You dot Com and

0:14:31.760 --> 0:14:34.640
<v Speaker 1>we'll also post it to all of our social media channels.

0:14:35.280 --> 0:14:37.680
<v Speaker 2>On our website, this podcast will kill You dot com.

0:14:37.920 --> 0:14:40.680
<v Speaker 2>You will find everything that you could want to find.

0:14:40.680 --> 0:14:44.400
<v Speaker 2>We have merch we have links to Bloodmobile, who provides

0:14:44.440 --> 0:14:48.080
<v Speaker 2>the music for this podcast. We have transcripts of all

0:14:48.160 --> 0:14:52.040
<v Speaker 2>of our episodes now, which is thrilling. We've got a

0:14:52.080 --> 0:14:54.920
<v Speaker 2>bookshop dot org affiliate account. We've got a good Reads list,

0:14:54.920 --> 0:14:57.000
<v Speaker 2>we have a link to our patreon. We have it's

0:14:57.000 --> 0:14:57.680
<v Speaker 2>all there.

0:14:57.640 --> 0:14:59.880
<v Speaker 1>It's all there, it's all there, and more.

0:15:00.400 --> 0:15:04.160
<v Speaker 2>With that, Aaron, should we just get into the endomeet

0:15:04.720 --> 0:15:07.960
<v Speaker 2>trium of this episode?

0:15:08.040 --> 0:15:17.080
<v Speaker 1>Erin, yes, yes, please please. Let's take a quick break first.

0:15:49.560 --> 0:15:54.120
<v Speaker 2>I can kind of sum up this whole episode with

0:15:54.200 --> 0:15:56.920
<v Speaker 2>one of the more recent papers that I found. It's

0:15:56.920 --> 0:16:00.760
<v Speaker 2>the title of a paper from twenty twenty one, and

0:16:00.800 --> 0:16:06.920
<v Speaker 2>the title is simply, the epidemiology of endometriosis is poorly

0:16:07.040 --> 0:16:10.920
<v Speaker 2>known as the pathophysiology and diagnosis are unclear.

0:16:12.240 --> 0:16:14.160
<v Speaker 1>And how that's the title.

0:16:14.680 --> 0:16:19.600
<v Speaker 2>I know that's the title. Man, Yeah, it's uh yeah,

0:16:19.640 --> 0:16:20.960
<v Speaker 2>We're off to a really good start.

0:16:21.040 --> 0:16:25.600
<v Speaker 1>Strong yep spoilers. I feel like, yes, we're in that title.

0:16:26.800 --> 0:16:31.840
<v Speaker 2>Okay, So endometriosis. I know there's probably a good subset

0:16:31.920 --> 0:16:34.560
<v Speaker 2>of our listenership who has never heard of this. And

0:16:34.600 --> 0:16:37.640
<v Speaker 2>I am going to get to the official definition really soon,

0:16:37.680 --> 0:16:44.160
<v Speaker 2>I promise, but some little lead in. Okay, Endometriosis is

0:16:44.320 --> 0:16:49.120
<v Speaker 2>almost always described as a disease of women of child

0:16:49.160 --> 0:16:55.600
<v Speaker 2>bearing age. That is how it is described. It's a

0:16:55.640 --> 0:17:01.520
<v Speaker 2>problem straight off the bat because this description ignores number one,

0:17:02.040 --> 0:17:05.320
<v Speaker 2>anyone who is trans or non binary that has a

0:17:05.440 --> 0:17:10.040
<v Speaker 2>uterus or has endometriosis. Number two, it ignores the fact

0:17:10.119 --> 0:17:16.080
<v Speaker 2>that endometriosis pain and endometriosis itself can persist or even

0:17:16.200 --> 0:17:23.120
<v Speaker 2>sometimes arise after menopause aka after quote child bearing. Number three,

0:17:23.240 --> 0:17:27.240
<v Speaker 2>It also ignores the fact that cases of endometriosis, though

0:17:27.720 --> 0:17:32.680
<v Speaker 2>very rare, have occurred in people assigned male at birth,

0:17:33.119 --> 0:17:38.000
<v Speaker 2>which means that a uterus isn't necessarily a prerequisite for

0:17:38.080 --> 0:17:43.800
<v Speaker 2>the disease. And finally, and I think most importantly, I

0:17:43.800 --> 0:17:47.320
<v Speaker 2>don't know they're all important, but by designating this disease

0:17:47.359 --> 0:17:50.720
<v Speaker 2>to this particular group quote women of child bearing age

0:17:51.240 --> 0:17:52.680
<v Speaker 2>and Aaron, I know you're going to talk a lot

0:17:52.680 --> 0:17:53.159
<v Speaker 2>more about this.

0:17:54.119 --> 0:17:56.720
<v Speaker 1>Oh yeah, yeah, so I thought, is it's also been

0:17:56.760 --> 0:17:58.000
<v Speaker 1>found in infants.

0:17:58.320 --> 0:18:01.720
<v Speaker 2>Oh that's a good point. Yeah, yeah, it can definitely

0:18:01.760 --> 0:18:04.360
<v Speaker 2>be in before child bearing age as well.

0:18:04.960 --> 0:18:07.200
<v Speaker 1>Everyone can get very trios.

0:18:07.840 --> 0:18:12.080
<v Speaker 2>But by designating it as the disease of women of

0:18:12.200 --> 0:18:15.680
<v Speaker 2>childbearing age, it makes it really really easy in our

0:18:15.840 --> 0:18:20.960
<v Speaker 2>society to dismiss it as a condition for oh, young

0:18:21.000 --> 0:18:24.359
<v Speaker 2>women just have poor pain tolerance, or oh this is

0:18:24.440 --> 0:18:30.440
<v Speaker 2>a women's problem, or even worse, as a normal part

0:18:30.960 --> 0:18:35.639
<v Speaker 2>of young womanhood. Spoiler alert, it is none of those things.

0:18:35.960 --> 0:18:39.720
<v Speaker 1>I'm going to be talking so much about this aspect

0:18:39.760 --> 0:18:40.200
<v Speaker 1>of it.

0:18:40.480 --> 0:18:44.320
<v Speaker 2>I can't wait. I'm gonna I'm going to try and

0:18:44.440 --> 0:18:47.239
<v Speaker 2>just hit us all with the little that we do

0:18:47.359 --> 0:18:51.280
<v Speaker 2>know about the biology. So let's actually define the topic

0:18:51.320 --> 0:18:52.560
<v Speaker 2>of today's episode, shall we?

0:18:53.000 --> 0:18:53.400
<v Speaker 1>Mm hmm?

0:18:53.680 --> 0:18:58.800
<v Speaker 2>Okay, So the technical definition of endometriosis is simply the

0:18:58.880 --> 0:19:04.600
<v Speaker 2>finding of endometrial glands and stroma, which just means endometrial

0:19:04.760 --> 0:19:11.600
<v Speaker 2>like tissue outside of the uterus. So what does that mean? Yeah,

0:19:11.640 --> 0:19:14.200
<v Speaker 2>to talk about that, I want to first talk about

0:19:14.240 --> 0:19:19.080
<v Speaker 2>my personal favorite organ, the uterus. That's my favorite one.

0:19:19.600 --> 0:19:20.600
<v Speaker 2>Do you have a favorite organ?

0:19:21.200 --> 0:19:23.400
<v Speaker 1>I've never thought about it.

0:19:23.400 --> 0:19:24.200
<v Speaker 2>It's a uterus.

0:19:24.720 --> 0:19:26.520
<v Speaker 1>No, I don't. I don't think I would need I

0:19:26.520 --> 0:19:27.320
<v Speaker 1>would need more time.

0:19:27.560 --> 0:19:30.879
<v Speaker 2>Okay, that's fine. Okay. So we talked I think a

0:19:30.920 --> 0:19:33.960
<v Speaker 2>fair bit about the uterus in our birth control episode

0:19:33.960 --> 0:19:36.920
<v Speaker 2>because we talked about the whole menstrual cycle. So I'm

0:19:36.960 --> 0:19:41.320
<v Speaker 2>just gonna briefly recap. The uterus is an organ that's

0:19:41.359 --> 0:19:45.000
<v Speaker 2>made up of a muscular wall, the myometrium, and an

0:19:45.040 --> 0:19:49.199
<v Speaker 2>inner layer, the endometrium, that's composed of glandular cells. So

0:19:49.240 --> 0:19:52.080
<v Speaker 2>there are these cells that basically form into little glands

0:19:52.720 --> 0:19:56.640
<v Speaker 2>as well as stroma or like support cells is how

0:19:56.640 --> 0:19:59.879
<v Speaker 2>you can think of them. That surround these glandular cells

0:20:00.880 --> 0:20:04.960
<v Speaker 2>and this endometrium. This inner lining of the uterus is

0:20:05.080 --> 0:20:10.679
<v Speaker 2>constantly in flux. This lining is what responds to and

0:20:10.800 --> 0:20:15.280
<v Speaker 2>changes with the influence of cyclic variation in our hormone levels,

0:20:15.840 --> 0:20:20.800
<v Speaker 2>most specifically estrogen and progesterone. This is the menstrual cycle

0:20:20.800 --> 0:20:23.280
<v Speaker 2>that we went over in our birth control episode, which

0:20:23.359 --> 0:20:26.439
<v Speaker 2>was now a couple of years ago. To recap it,

0:20:26.880 --> 0:20:32.080
<v Speaker 2>Under the influence of an increase in estrogen, oocytes in

0:20:32.119 --> 0:20:35.679
<v Speaker 2>the ovaries begin to mature, and the uterus lining the

0:20:35.800 --> 0:20:42.200
<v Speaker 2>endometrium proliferates, it grows in number. These stromo cells and

0:20:42.359 --> 0:20:46.119
<v Speaker 2>these glandular cells, and this is known as the follicular

0:20:46.200 --> 0:20:51.480
<v Speaker 2>phase or the proliferative phase, where this lining is growing

0:20:53.200 --> 0:20:56.560
<v Speaker 2>and the endometril lining is becoming thicker in preparation for

0:20:56.640 --> 0:21:01.159
<v Speaker 2>the potential implantation of a blastocyst. Then that peak of

0:21:01.320 --> 0:21:05.000
<v Speaker 2>estrogen prompts a surge of another hormone that causes the

0:21:05.040 --> 0:21:08.920
<v Speaker 2>release of an egg aka ovulation. And then as that

0:21:09.160 --> 0:21:13.600
<v Speaker 2>surge of estrogen declines, progesterone, another hormone, begins to increase,

0:21:14.400 --> 0:21:18.320
<v Speaker 2>and the uterus, the endometrium enters what's known as the

0:21:18.359 --> 0:21:23.600
<v Speaker 2>secretary phase, where these glands thicken and the arteries within

0:21:23.720 --> 0:21:29.040
<v Speaker 2>their widen and proliferate in number, and the endometrium undergoes

0:21:29.080 --> 0:21:34.679
<v Speaker 2>this process, further preparing it for receiving a blasticist. And

0:21:34.720 --> 0:21:39.400
<v Speaker 2>then without anything that implants, fourteen days go by and

0:21:39.800 --> 0:21:44.760
<v Speaker 2>progesterone levels sharply decline, and this withdrawal leads to the

0:21:44.800 --> 0:21:47.840
<v Speaker 2>separation of all these cells from their basal layer and

0:21:47.880 --> 0:21:52.720
<v Speaker 2>they slough off aka menstruation. All of that endometrial tissue

0:21:52.720 --> 0:21:56.719
<v Speaker 2>then exits through the cervix, which is the opening of

0:21:56.760 --> 0:22:03.960
<v Speaker 2>the uterus through the vagina, and that is menstruation, right, yep, right, Okay,

0:22:04.000 --> 0:22:06.800
<v Speaker 2>So if that all is the menstrual cycle, and that's

0:22:06.800 --> 0:22:10.679
<v Speaker 2>what's happening inside of a uterus during that menstrual cycle,

0:22:11.560 --> 0:22:16.639
<v Speaker 2>then what is endometriosis If it's the finding of these

0:22:16.760 --> 0:22:20.520
<v Speaker 2>same type of cells that are found inside of a uterus,

0:22:20.560 --> 0:22:26.240
<v Speaker 2>these endometrial, glandular and stromal cells, but now they are

0:22:26.440 --> 0:22:32.439
<v Speaker 2>implanted in tissue outside of the uterus. So instead of

0:22:32.480 --> 0:22:37.440
<v Speaker 2>being inside the lining of this muscular organ, it's outside

0:22:37.440 --> 0:22:40.919
<v Speaker 2>on the wall of the organ, or on the wall

0:22:41.080 --> 0:22:44.040
<v Speaker 2>of your belly, which is called the peritoneum, the inside

0:22:44.080 --> 0:22:47.520
<v Speaker 2>wall of your abdomen. It could even be on your

0:22:47.520 --> 0:22:52.400
<v Speaker 2>bladder or in your Philippian tubes, or on your ovary,

0:22:53.119 --> 0:22:56.719
<v Speaker 2>or on your rectum. It could be anywhere literally in

0:22:56.760 --> 0:22:57.240
<v Speaker 2>your body.

0:22:57.840 --> 0:22:59.080
<v Speaker 1>Yeah.

0:22:59.280 --> 0:23:02.280
<v Speaker 2>So then the question is how does this become a

0:23:02.320 --> 0:23:04.680
<v Speaker 2>disease or a problem, Like why is it a problem

0:23:04.720 --> 0:23:09.680
<v Speaker 2>to have this tissue outside of the uterus. Well, this

0:23:09.920 --> 0:23:15.720
<v Speaker 2>tissue is still active. It's hormonally sensitive endometrial cells that

0:23:15.800 --> 0:23:22.400
<v Speaker 2>are undergoing the same proliferative and secretory and then degeneration

0:23:22.880 --> 0:23:26.760
<v Speaker 2>that happens within the uterus and would end in mensies

0:23:27.280 --> 0:23:30.960
<v Speaker 2>leaving the body through the vagina, but it's happening in

0:23:31.000 --> 0:23:36.520
<v Speaker 2>an abnormal location and therefore leading to not only abnormal

0:23:36.560 --> 0:23:42.080
<v Speaker 2>responses in our body and massive amounts of inflammation, but

0:23:42.160 --> 0:23:44.879
<v Speaker 2>it's also then not able to leave the body, so

0:23:44.920 --> 0:23:49.679
<v Speaker 2>this inflammation stays contained within the body. That leads to

0:23:49.760 --> 0:23:54.000
<v Speaker 2>tissue damage, which can then lead to scarring and fibrosis,

0:23:54.640 --> 0:23:59.760
<v Speaker 2>which leads to the symptoms of endometriosis, which are chiefly pain,

0:24:00.440 --> 0:24:06.440
<v Speaker 2>which doesn't begin to describe adequately like the true symptoms,

0:24:07.720 --> 0:24:12.800
<v Speaker 2>and also infertility or difficulty conceiving or sustaining a pregnancy.

0:24:14.359 --> 0:24:16.720
<v Speaker 2>So that was a lot, like all in a very

0:24:16.720 --> 0:24:18.920
<v Speaker 2>short amount of time. And that's all we know about

0:24:18.960 --> 0:24:23.800
<v Speaker 2>enemy dresses. Just kidding, We know like a tiny bit

0:24:23.840 --> 0:24:28.600
<v Speaker 2>more than that. Yeah, So that explanation left a lot

0:24:28.640 --> 0:24:31.760
<v Speaker 2>of open ended questions, and I think the first one

0:24:31.880 --> 0:24:34.080
<v Speaker 2>that I would like to be able to answer is

0:24:34.840 --> 0:24:39.840
<v Speaker 2>how how does this endometrial tissue end up in a

0:24:39.880 --> 0:24:45.840
<v Speaker 2>place where endometrium shouldn't be. Tissue types in our body,

0:24:46.119 --> 0:24:49.520
<v Speaker 2>like different cell types are actually pretty tightly regulated, So

0:24:49.640 --> 0:24:52.479
<v Speaker 2>like the tissue that makes up our lining of our

0:24:52.560 --> 0:24:55.040
<v Speaker 2>abdomen is different than the tissue that makes up the

0:24:55.080 --> 0:24:57.320
<v Speaker 2>lining of your uterus, which is different than the tissue

0:24:57.600 --> 0:25:00.439
<v Speaker 2>that makes up your heart or your blood, ves, souls,

0:25:00.520 --> 0:25:00.960
<v Speaker 2>et cetera.

0:25:01.240 --> 0:25:05.280
<v Speaker 1>Right, Right, And so then because it's so tightly regulated,

0:25:06.359 --> 0:25:10.160
<v Speaker 1>shouldn't your body recognize that, like, hey, this isn't necessarily

0:25:11.040 --> 0:25:13.440
<v Speaker 1>in the right spot it.

0:25:13.720 --> 0:25:16.480
<v Speaker 2>Yeah, And in the case of anenometrius, that's part of

0:25:16.520 --> 0:25:19.639
<v Speaker 2>the problem is that your body does recognize it as

0:25:19.680 --> 0:25:23.000
<v Speaker 2>something that's not in the right spot and therefore causes

0:25:23.040 --> 0:25:27.240
<v Speaker 2>a lot of inflammation within it, right, Yeah, And so

0:25:27.400 --> 0:25:29.439
<v Speaker 2>then that leads to part of the problem, or at

0:25:29.520 --> 0:25:32.000
<v Speaker 2>least we think that maybe that's how it's happening. And

0:25:32.280 --> 0:25:35.199
<v Speaker 2>with a lot to do with endometriosis, it's hard to

0:25:35.320 --> 0:25:38.840
<v Speaker 2>know who's the instigator, like which is the cause and

0:25:38.880 --> 0:25:44.760
<v Speaker 2>which is the effect? Right, right, But yes, that can

0:25:44.800 --> 0:25:47.280
<v Speaker 2>be part of the problem because our body does recognize

0:25:47.320 --> 0:25:51.080
<v Speaker 2>when a tissue is not in the right place a

0:25:51.080 --> 0:25:53.879
<v Speaker 2>lot of times. But again, this doesn't happen very often

0:25:53.920 --> 0:25:57.280
<v Speaker 2>to have a tissue type in a location in the

0:25:57.280 --> 0:26:00.800
<v Speaker 2>body where it doesn't belong. Because in general, as we

0:26:00.840 --> 0:26:03.600
<v Speaker 2>develop from a single cell all the way into our

0:26:03.680 --> 0:26:09.240
<v Speaker 2>multicellular human cells, our cells undergo this process of differentiation

0:26:09.640 --> 0:26:13.080
<v Speaker 2>into all of our specific tissue types in a very

0:26:13.280 --> 0:26:19.080
<v Speaker 2>characteristic pattern during the process of embryogenesis and development. So

0:26:19.240 --> 0:26:22.680
<v Speaker 2>all of our cells have very explicit sets of instructions

0:26:22.680 --> 0:26:26.760
<v Speaker 2>that they follow and explicit influences that they're under in

0:26:26.920 --> 0:26:30.879
<v Speaker 2>order to develop into these different tissue types in certain

0:26:30.920 --> 0:26:35.119
<v Speaker 2>areas and not in others, Which is why we don't

0:26:35.200 --> 0:26:38.040
<v Speaker 2>see heart tissue in our bones or brain tissue in

0:26:38.080 --> 0:26:42.119
<v Speaker 2>our guts for the most part. So why on earth

0:26:42.240 --> 0:26:47.400
<v Speaker 2>do we sometimes get endometrial tissue outside of the inside

0:26:47.560 --> 0:26:52.879
<v Speaker 2>of the uterus? And the short answer is, we don't know,

0:26:53.440 --> 0:26:57.919
<v Speaker 2>we don't know, we do not know. Let me go

0:26:58.040 --> 0:27:01.639
<v Speaker 2>through the quote prevailing theories and then maybe Erin you

0:27:01.680 --> 0:27:07.359
<v Speaker 2>and I can have some opinions. So the kind of

0:27:08.560 --> 0:27:15.040
<v Speaker 2>what's obnoxiously still called the prevailing theory on how this happens,

0:27:15.119 --> 0:27:18.959
<v Speaker 2>on how endometral glands end up implanting and then replicating

0:27:19.000 --> 0:27:24.120
<v Speaker 2>and proliferating outside our uterus is something called retrograde menstruation

0:27:24.600 --> 0:27:25.000
<v Speaker 2>or what.

0:27:24.920 --> 0:27:27.400
<v Speaker 1>Do you call it, Erin as I've been calling it

0:27:27.840 --> 0:27:32.919
<v Speaker 1>menstrual backwashril backwash. Could not for the life of me

0:27:33.040 --> 0:27:34.840
<v Speaker 1>remember retrograde menstruation.

0:27:35.960 --> 0:27:40.680
<v Speaker 2>It's a good visual menstrual backwash.

0:27:41.080 --> 0:27:42.480
<v Speaker 1>Yeah, essentially.

0:27:43.480 --> 0:27:45.639
<v Speaker 2>So if you've not recently looked at a picture of

0:27:45.640 --> 0:27:50.240
<v Speaker 2>a uterus, let me paint you one. So the uterus

0:27:50.320 --> 0:27:53.680
<v Speaker 2>is connected to Philippian tubes at the top. They look

0:27:53.760 --> 0:27:56.280
<v Speaker 2>kind of like ears that come off, or maybe little arms,

0:27:57.040 --> 0:27:59.800
<v Speaker 2>and these Filippian tubes are open at the end. They

0:27:59.880 --> 0:28:03.640
<v Speaker 2>have these little thimbrae little fingers at the end, and

0:28:04.040 --> 0:28:08.040
<v Speaker 2>just outside of these Philippian tubes is where our ovaries sit.

0:28:09.160 --> 0:28:14.360
<v Speaker 2>So during menstruation, all of the endometril lining and tissue

0:28:14.840 --> 0:28:17.840
<v Speaker 2>comes out through the cervix, which is the base of

0:28:18.040 --> 0:28:22.320
<v Speaker 2>the uterus, and also the top of the vaginal canal,

0:28:23.560 --> 0:28:27.280
<v Speaker 2>that is the normal flow of menstrual products. But the

0:28:27.320 --> 0:28:31.000
<v Speaker 2>top of the uterus, those Filippian tubes are open at

0:28:31.000 --> 0:28:36.639
<v Speaker 2>the ends. So in fact, there is in many people

0:28:36.760 --> 0:28:42.800
<v Speaker 2>who menstrate, menstrual product aka endometrial tissue that goes backwards

0:28:42.920 --> 0:28:45.400
<v Speaker 2>and it goes out through those Philippian tubes and enters

0:28:45.440 --> 0:28:53.000
<v Speaker 2>our peritoneal cavity. That's it backwash, backwash. And it was

0:28:53.160 --> 0:28:59.280
<v Speaker 2>thought that this certainly must be the way that endometriosis happens.

0:28:59.320 --> 0:29:04.440
<v Speaker 2>These endometrial tissues are entering our peritoneal cavity. Boom, there

0:29:04.440 --> 0:29:04.760
<v Speaker 2>you go.

0:29:05.480 --> 0:29:08.720
<v Speaker 1>I think there's a really interesting parallel between this, like

0:29:09.440 --> 0:29:15.840
<v Speaker 1>wandering endometrial tissue concept and the wandering uterus, the wandering

0:29:15.960 --> 0:29:17.400
<v Speaker 1>usteria concept.

0:29:17.640 --> 0:29:20.400
<v Speaker 2>It's yeah, it's the same. It totally is.

0:29:20.960 --> 0:29:22.280
<v Speaker 1>It's very interesting to me.

0:29:23.160 --> 0:29:26.360
<v Speaker 2>And you know, there is some evidence in support of this,

0:29:26.520 --> 0:29:32.920
<v Speaker 2>because a sizeable portion of endometrial implants occur in areas

0:29:33.360 --> 0:29:38.480
<v Speaker 2>where this menstrual backwash, this retrograde menstruation would end up.

0:29:39.360 --> 0:29:42.360
<v Speaker 2>And in a lot of people where they have looked

0:29:42.400 --> 0:29:46.000
<v Speaker 2>at does this person with endometriosis have retrograde menstruation, they

0:29:46.000 --> 0:29:50.600
<v Speaker 2>have found yes they do, and so there's a correlation there.

0:29:52.120 --> 0:29:55.840
<v Speaker 2>But as it turns out, this is very common and

0:29:56.040 --> 0:30:00.000
<v Speaker 2>happens in at least, if not more than, about forty

0:30:00.120 --> 0:30:03.400
<v Speaker 2>percent of people with the uterus who men straight pretty

0:30:03.440 --> 0:30:07.480
<v Speaker 2>much every time they menstraight to varying degrees. Right, So

0:30:07.760 --> 0:30:10.720
<v Speaker 2>it doesn't explain why some people then go on to

0:30:10.800 --> 0:30:15.920
<v Speaker 2>develop endometriosis and others don't. It also doesn't explain how

0:30:16.040 --> 0:30:19.840
<v Speaker 2>endometriosis can happen in people without a uterus to begin with,

0:30:20.320 --> 0:30:25.640
<v Speaker 2>which again is incredibly rare, but has happened and it

0:30:25.720 --> 0:30:30.880
<v Speaker 2>doesn't explain how endometrial cells can end up outside of

0:30:30.920 --> 0:30:36.600
<v Speaker 2>the abdominal cavity entirely, which it can, right, You can

0:30:36.600 --> 0:30:40.560
<v Speaker 2>get endometriosis in the diaphragm, in the thorax.

0:30:40.080 --> 0:30:42.280
<v Speaker 1>In the lungs. Uh huh.

0:30:42.400 --> 0:30:47.080
<v Speaker 2>So this menstrual backwash theory doesn't quite some work. It

0:30:46.480 --> 0:30:48.960
<v Speaker 2>need some work, or it.

0:30:49.040 --> 0:30:51.680
<v Speaker 1>Just needs to be discarded for a new one or

0:30:51.720 --> 0:30:54.440
<v Speaker 1>integrated with another passis.

0:30:54.240 --> 0:30:56.640
<v Speaker 2>Yeah, and we'll we'll get there actually, because there's an

0:30:56.640 --> 0:31:00.360
<v Speaker 2>interesting integrative one. So then there is a theory of

0:31:00.440 --> 0:31:02.960
<v Speaker 2>stem cells, of which there are kind of two different

0:31:03.000 --> 0:31:06.800
<v Speaker 2>schools of thought. So stem cells, I think that I

0:31:06.880 --> 0:31:09.840
<v Speaker 2>might have touched on this in the HPV episode. I'm

0:31:09.880 --> 0:31:13.440
<v Speaker 2>not positive we've talked about them before, but anyways, I

0:31:13.480 --> 0:31:16.840
<v Speaker 2>don't know. A stem cell is a cell that has

0:31:16.960 --> 0:31:23.600
<v Speaker 2>the ability to differentiate into other cell types. So, like

0:31:23.640 --> 0:31:26.520
<v Speaker 2>I was saying, how when we develop from a single

0:31:26.560 --> 0:31:32.560
<v Speaker 2>cell into a multicellular human, our cells are differentiating. They're

0:31:32.560 --> 0:31:37.239
<v Speaker 2>becoming like grown up quote unquote, grown up cells that

0:31:37.360 --> 0:31:41.200
<v Speaker 2>have a specific job and function well. Stem cells are

0:31:41.280 --> 0:31:44.040
<v Speaker 2>kind of like baby cells that have the ability to

0:31:44.200 --> 0:31:48.120
<v Speaker 2>grow up and become any other type of cell or

0:31:48.120 --> 0:31:51.280
<v Speaker 2>many other types of cells. So there's a theory that

0:31:51.400 --> 0:31:55.760
<v Speaker 2>perhaps bone marrow stem cells, which have the ability to

0:31:55.840 --> 0:31:59.560
<v Speaker 2>differentiate into a number of cell types, might somehow find

0:31:59.600 --> 0:32:03.880
<v Speaker 2>their way into the peritoneum or the abdominal cavity, and

0:32:03.920 --> 0:32:09.600
<v Speaker 2>then there they would embed and under certain hormonal influences,

0:32:09.760 --> 0:32:14.000
<v Speaker 2>would differentiate into endometrial cells for some reason.

0:32:14.800 --> 0:32:15.520
<v Speaker 1>Huh.

0:32:15.640 --> 0:32:19.640
<v Speaker 2>Yeah, that's one theory. It's not a great one.

0:32:20.920 --> 0:32:26.120
<v Speaker 1>Yeah, I'm like, how does that explain timing of things?

0:32:26.400 --> 0:32:29.880
<v Speaker 2>Or honestly or in it doesn't. Okay, it's not my

0:32:29.920 --> 0:32:34.040
<v Speaker 2>favorite of the theories. So another one that's I think

0:32:34.080 --> 0:32:39.240
<v Speaker 2>at least a little bit more easy to understand is

0:32:39.840 --> 0:32:44.880
<v Speaker 2>a theory that it's endometrial stem cells. Okay, this is

0:32:44.960 --> 0:32:49.360
<v Speaker 2>coming a little bit closer. So, and this theory can

0:32:49.400 --> 0:32:53.800
<v Speaker 2>actually kind of tie into the menstrual backwash theory but

0:32:54.280 --> 0:32:57.080
<v Speaker 2>adds on to it a little bit. So in this case,

0:32:57.120 --> 0:33:00.320
<v Speaker 2>it's not the menstrual backwash per se.

0:33:00.560 --> 0:33:03.680
<v Speaker 1>I love that we're calling it menstrual backwash. Now we've just.

0:33:04.080 --> 0:33:10.520
<v Speaker 2>We're all in. Okay, So it's not the retrograde menstruation

0:33:10.920 --> 0:33:16.280
<v Speaker 2>of just any old endometrial cells, but of specifically endometrial

0:33:16.320 --> 0:33:20.240
<v Speaker 2>stem cells like the basal cell layers that have the

0:33:20.320 --> 0:33:26.040
<v Speaker 2>ability to differentiate into the different endometrial cell types. If

0:33:26.200 --> 0:33:31.920
<v Speaker 2>those maybe are either backwashed or find their way into

0:33:31.920 --> 0:33:37.360
<v Speaker 2>our bloodstream or our lymphatics, then perhaps those can embed

0:33:38.040 --> 0:33:42.400
<v Speaker 2>and they already have the ability they're programmed to differentiate

0:33:42.520 --> 0:33:46.479
<v Speaker 2>into endometrial cells. So it's logical then that they would

0:33:46.960 --> 0:33:50.920
<v Speaker 2>be responsive to the same hormonal influences that they would

0:33:51.000 --> 0:33:54.120
<v Speaker 2>if they were still in the inside of the uterus.

0:33:54.200 --> 0:33:55.040
<v Speaker 2>Does that make sense?

0:33:55.640 --> 0:33:59.360
<v Speaker 1>Yeah, that's interesting. And so are there any studies, animal

0:33:59.360 --> 0:34:02.720
<v Speaker 1>studies or something things showing support for this or even

0:34:02.840 --> 0:34:05.320
<v Speaker 1>just like tissue culture studies showing support for this.

0:34:06.360 --> 0:34:10.600
<v Speaker 2>There are certainly studies that show that these stem cell

0:34:10.640 --> 0:34:15.799
<v Speaker 2>types exist and can embed and then become you know,

0:34:16.160 --> 0:34:18.280
<v Speaker 2>endometra like tissue.

0:34:18.440 --> 0:34:23.520
<v Speaker 1>Okay, And how then would those stem cells so these

0:34:23.520 --> 0:34:26.320
<v Speaker 1>are like these would be like the deepest basis layer.

0:34:27.040 --> 0:34:28.440
<v Speaker 2>Yes, that's my understanding.

0:34:28.840 --> 0:34:32.120
<v Speaker 1>Okay, So then how do they escape? Yea, the uterus.

0:34:32.200 --> 0:34:34.080
<v Speaker 2>That's the question that we don't have an answer to.

0:34:34.880 --> 0:34:35.440
<v Speaker 1>Interesting.

0:34:37.120 --> 0:34:42.120
<v Speaker 2>There's another theory, and this is the sillomic metaplasia theory,

0:34:42.719 --> 0:34:45.960
<v Speaker 2>which is your celum is the inside of your abdomen,

0:34:46.239 --> 0:34:51.480
<v Speaker 2>so in this theory, regular old abdominal cells wherever in

0:34:51.520 --> 0:34:58.480
<v Speaker 2>your abdomen just undergo metaplasia. Metaplasia means they develop mutations

0:34:58.920 --> 0:35:02.480
<v Speaker 2>and then they change. And so instead of being a

0:35:03.000 --> 0:35:11.040
<v Speaker 2>differentiated let's say, abdominal wall cell, they dedifferentiate and then

0:35:11.520 --> 0:35:14.240
<v Speaker 2>redifferentiate into endometrial cells.

0:35:14.600 --> 0:35:16.800
<v Speaker 1>Huh huh.

0:35:16.840 --> 0:35:20.840
<v Speaker 2>So in this theory, instead of like a baby undifferentiated

0:35:20.880 --> 0:35:24.560
<v Speaker 2>stem cell that has the potential to become any cell type,

0:35:25.040 --> 0:35:30.799
<v Speaker 2>you're taking a fully formed adult cell and changing it

0:35:31.280 --> 0:35:32.560
<v Speaker 2>into an endometrial cell.

0:35:33.200 --> 0:35:37.400
<v Speaker 1>Yeah, yeah, that seems okay, that seems a little complicated.

0:35:38.080 --> 0:35:42.799
<v Speaker 1>So currently today in we're recording this in twenty twenty one,

0:35:43.760 --> 0:35:46.759
<v Speaker 1>I know that like the prevailing hypothesis is still this

0:35:46.800 --> 0:35:50.239
<v Speaker 1>Spenstreul backwash thing. But is that, like, what is the

0:35:50.280 --> 0:35:53.279
<v Speaker 1>timeline for these other hypotheses, and is there are there

0:35:53.320 --> 0:35:57.400
<v Speaker 1>any of them that are seeking to dethrone so that one.

0:35:57.600 --> 0:36:02.480
<v Speaker 2>The thing is not really okay, because the thing is

0:36:02.640 --> 0:36:05.400
<v Speaker 2>And here's the problem is that none of these theories

0:36:05.480 --> 0:36:10.160
<v Speaker 2>in and of themselves fully or adequately address the question

0:36:10.320 --> 0:36:15.759
<v Speaker 2>of how exactly endometriosis occurs, right, And they also don't

0:36:15.800 --> 0:36:19.240
<v Speaker 2>answer the question of why do some people get endometriosis

0:36:19.239 --> 0:36:23.200
<v Speaker 2>and other people don't. What are the risk factors? And

0:36:23.360 --> 0:36:27.280
<v Speaker 2>so I think where there is more research being done

0:36:27.440 --> 0:36:30.480
<v Speaker 2>is trying to understand the second part of that question,

0:36:30.640 --> 0:36:34.080
<v Speaker 2>why do some people get endometriosis and others don't. Maybe

0:36:34.080 --> 0:36:36.279
<v Speaker 2>it is one of these theories that we already have,

0:36:36.400 --> 0:36:40.080
<v Speaker 2>Maybe it really is menstrual backwash, but it still doesn't

0:36:40.120 --> 0:36:43.719
<v Speaker 2>answer the question of why forty percent of people have

0:36:43.800 --> 0:36:49.399
<v Speaker 2>menstrual backwash and not forty percent of people have endometriosis? Right, right,

0:36:51.160 --> 0:36:54.320
<v Speaker 2>And part of the answer to that question at least

0:36:54.440 --> 0:36:58.880
<v Speaker 2>seems to be genetic. So in a number of genome

0:36:58.920 --> 0:37:01.600
<v Speaker 2>wide associations studies, which is when you look at someone's

0:37:01.719 --> 0:37:05.080
<v Speaker 2>entire genome and you try and figure out what's going on,

0:37:05.960 --> 0:37:08.160
<v Speaker 2>there have been I think at least like ten or

0:37:08.200 --> 0:37:13.359
<v Speaker 2>fifteen different gene low size so different locations that have

0:37:13.480 --> 0:37:17.799
<v Speaker 2>been shown to be associated with endometriosis. So we know

0:37:17.880 --> 0:37:21.439
<v Speaker 2>that there's a strong genetic component, but knowing that there's

0:37:21.760 --> 0:37:25.600
<v Speaker 2>at least ten or fifteen different genes is also maybe

0:37:25.600 --> 0:37:28.920
<v Speaker 2>not all that helpful because it's hard to know what

0:37:29.440 --> 0:37:33.239
<v Speaker 2>that means. Right. It does seem like all of these

0:37:33.280 --> 0:37:37.520
<v Speaker 2>gene regions are in some way related to hormonal regulation

0:37:37.840 --> 0:37:42.040
<v Speaker 2>in some respect, so a lot of this is a

0:37:42.280 --> 0:37:46.440
<v Speaker 2>hormonally driven disease and really an estrogen dependent disease in

0:37:46.480 --> 0:37:50.239
<v Speaker 2>a lot of ways. But really one of the prevailing

0:37:50.320 --> 0:37:53.640
<v Speaker 2>thoughts is that it is this kind of genetic and

0:37:53.760 --> 0:38:00.360
<v Speaker 2>epigenetic factors combined with these unknown environmental insults that leads

0:38:00.400 --> 0:38:05.799
<v Speaker 2>to endometriosis, and endometriosis is associated with a number of

0:38:05.840 --> 0:38:10.279
<v Speaker 2>other autoimmune disorders, and that's kind of the thinking with

0:38:10.400 --> 0:38:15.279
<v Speaker 2>autoimmune disorders as well. Right, It's these genetic predispositions and

0:38:16.040 --> 0:38:20.719
<v Speaker 2>some kind of environmental influences that combine together to then

0:38:20.880 --> 0:38:23.240
<v Speaker 2>lead to this disease.

0:38:23.640 --> 0:38:26.799
<v Speaker 4>It's not satisfying, but it does make sense in that

0:38:27.440 --> 0:38:31.920
<v Speaker 4>if there's a high level of inflammatory response to this

0:38:32.080 --> 0:38:37.000
<v Speaker 4>self tissue, even like in places it shouldn't be compared.

0:38:36.600 --> 0:38:38.480
<v Speaker 1>To people who may not have as high as a

0:38:38.520 --> 0:38:41.839
<v Speaker 1>strong you know, inflammatory response and so might not have

0:38:41.840 --> 0:38:45.000
<v Speaker 1>a strong symptoms or might not have the development of

0:38:45.280 --> 0:38:49.040
<v Speaker 1>endometrio lesions or whatever exactly, then that sort of that

0:38:49.120 --> 0:38:50.200
<v Speaker 1>kind of goes along with it.

0:38:50.480 --> 0:38:56.040
<v Speaker 2>Yeah, especially because while this is if you look at

0:38:56.200 --> 0:39:01.359
<v Speaker 2>endometriosis tissue histologically like under a microscope. It looks just

0:39:01.400 --> 0:39:06.359
<v Speaker 2>like endometrial tissue. It's histologically it is endometrial tissue, and

0:39:06.400 --> 0:39:09.160
<v Speaker 2>in some ways it does behave in the same way

0:39:09.320 --> 0:39:14.680
<v Speaker 2>as endometrial tissue inside your uterus, right, it proliferates with estrogen,

0:39:15.200 --> 0:39:22.320
<v Speaker 2>it degrades, et cetera. But what's different is that outside

0:39:22.320 --> 0:39:26.200
<v Speaker 2>of the uterus, this endometrial tissue is associated with hugely

0:39:26.280 --> 0:39:30.279
<v Speaker 2>increased amounts of inflammation, and this we do know. So

0:39:30.360 --> 0:39:34.279
<v Speaker 2>we know that local inflammation and immune dysregulation is a

0:39:34.320 --> 0:39:38.919
<v Speaker 2>really big part of the pathogenicity of endometriosis, and this

0:39:39.040 --> 0:39:43.040
<v Speaker 2>inflammation itself is what then leads to the fibrosis, which

0:39:43.160 --> 0:39:46.640
<v Speaker 2>leads to these adhesions, which can lead to such significant

0:39:46.680 --> 0:39:50.560
<v Speaker 2>pain and symptoms. So one way to think of it

0:39:50.600 --> 0:39:55.360
<v Speaker 2>is that it's all related to the bleeding, because endometril

0:39:55.400 --> 0:39:59.640
<v Speaker 2>proliferation and then degeneration leads to so much bleeding. The

0:40:00.160 --> 0:40:04.120
<v Speaker 2>leading itself, like blood itself, is a very very inflammatory,

0:40:04.200 --> 0:40:06.880
<v Speaker 2>So the fact that it's trapped somewhere inside your body

0:40:07.320 --> 0:40:11.120
<v Speaker 2>rather than traveling through the vaginal canal, leads to a

0:40:11.120 --> 0:40:15.640
<v Speaker 2>lot of inflammation, which leads to immune cell infiltration, which

0:40:15.840 --> 0:40:19.000
<v Speaker 2>et cetera. Et cetera, all the way down the line.

0:40:19.760 --> 0:40:22.360
<v Speaker 2>But it's also not clear that that's the order in

0:40:22.400 --> 0:40:24.640
<v Speaker 2>which things go. It could be that do you have

0:40:24.840 --> 0:40:30.200
<v Speaker 2>underlying inflammatory changes, differences in the way that your inflammatory

0:40:30.239 --> 0:40:35.680
<v Speaker 2>markers react that then leads to the increased inflammation. Does

0:40:35.680 --> 0:40:36.640
<v Speaker 2>that make sense?

0:40:36.880 --> 0:40:38.920
<v Speaker 1>Yeah, so it's like a chicken in the egg, but

0:40:39.000 --> 0:40:42.040
<v Speaker 1>it's like the chocolate system and the inflammation.

0:40:42.320 --> 0:40:50.719
<v Speaker 2>That's exactly right, Aaron. Yeah, so that is what we

0:40:50.960 --> 0:40:54.760
<v Speaker 2>know about the kind of pathogenicity of vendometriosis.

0:40:55.400 --> 0:40:59.480
<v Speaker 1>I'm still confused, like it's so so yeah, same okay,

0:40:59.560 --> 0:41:04.480
<v Speaker 1>question okay, or rather question what do these lesions look like?

0:41:04.600 --> 0:41:07.480
<v Speaker 1>How big do they get, what are the variations in

0:41:09.719 --> 0:41:11.399
<v Speaker 1>How do you know when you have one, et cetera,

0:41:11.440 --> 0:41:11.799
<v Speaker 1>et cetera.

0:41:11.960 --> 0:41:16.120
<v Speaker 2>Yeah. So, typically endometriosis is classified into kind of three

0:41:16.440 --> 0:41:22.359
<v Speaker 2>main subtypes. So there's superficial peritoneal legions, which means these

0:41:22.400 --> 0:41:27.840
<v Speaker 2>little endometrial implants that are primarily within the abdominal cavity,

0:41:28.320 --> 0:41:32.200
<v Speaker 2>either on like the sirosa, which is the outside lining

0:41:32.400 --> 0:41:36.840
<v Speaker 2>of other organs, or on the walls of your abdominal cavity,

0:41:36.840 --> 0:41:40.720
<v Speaker 2>maybe tucked behind your uterus or up on the front

0:41:40.920 --> 0:41:46.600
<v Speaker 2>anywhere really, but they don't extend deeply into the tissues,

0:41:46.800 --> 0:41:51.000
<v Speaker 2>these superficial lesions, and they're generally small. I don't have

0:41:51.040 --> 0:41:54.640
<v Speaker 2>an exact size for you, but they don't extend very deeply.

0:41:55.400 --> 0:42:00.440
<v Speaker 2>That's the first type. Then there are ovarian endometriomas, which

0:42:00.600 --> 0:42:05.520
<v Speaker 2>is where we got the name for our drink. This

0:42:05.680 --> 0:42:10.480
<v Speaker 2>basically just means that the endometriosis has implanted on or

0:42:10.560 --> 0:42:13.839
<v Speaker 2>within the ovary. It's actually thought that it might be

0:42:14.400 --> 0:42:19.399
<v Speaker 2>like where the eggs pop out. If endometrial implants find

0:42:19.440 --> 0:42:22.600
<v Speaker 2>their way in there, they then become enclosed and then

0:42:22.640 --> 0:42:26.440
<v Speaker 2>they form. They can form these really rather large cysts,

0:42:27.320 --> 0:42:31.520
<v Speaker 2>and because they are enclosed within kind of ovarian tissue

0:42:31.560 --> 0:42:36.560
<v Speaker 2>and scar tissue around them, they undergo the same cycles

0:42:37.000 --> 0:42:42.759
<v Speaker 2>of proliferation and degeneration, and within time that blood is

0:42:42.800 --> 0:42:46.759
<v Speaker 2>like contained inside this cyst, and over time that becomes

0:42:46.840 --> 0:42:49.920
<v Speaker 2>a very dark like chocolate color, which is how they

0:42:49.960 --> 0:42:51.600
<v Speaker 2>got the name chocolate cysts.

0:42:51.880 --> 0:42:55.360
<v Speaker 1>It also sounds horribly painful.

0:42:55.400 --> 0:42:59.239
<v Speaker 2>Yes, and they can get very quite large. And then

0:42:59.680 --> 0:43:06.439
<v Speaker 2>the word subtype is deeply infiltrating endometriosis literally acronymed as dye.

0:43:07.040 --> 0:43:10.279
<v Speaker 2>Mm hmmm, Like who came up with that.

0:43:10.680 --> 0:43:13.600
<v Speaker 1>Mm hmm, Yeah, it's not great, yep.

0:43:15.040 --> 0:43:20.440
<v Speaker 2>And this deeply infiltrating form, by definition, invades into deeper structures,

0:43:20.480 --> 0:43:23.920
<v Speaker 2>which means instead of just being on the surface of

0:43:24.160 --> 0:43:27.960
<v Speaker 2>say your abdominal wall or on the surface of your bladder,

0:43:28.600 --> 0:43:32.640
<v Speaker 2>it's invading deeper into the muscles of your bladder, into

0:43:32.680 --> 0:43:37.080
<v Speaker 2>the walls of your rectum, through your urethra or your

0:43:37.200 --> 0:43:41.960
<v Speaker 2>urytor for example. God, yeah, it can be horrific, and

0:43:42.040 --> 0:43:49.200
<v Speaker 2>so especially deeply infiltrating endometriosis can cause not only incredible pain,

0:43:49.760 --> 0:43:52.960
<v Speaker 2>but also can then cause damage to and blockage of

0:43:53.400 --> 0:43:58.920
<v Speaker 2>really important structures like your colon or your bladder or

0:43:58.960 --> 0:43:59.880
<v Speaker 2>your urytor.

0:44:01.760 --> 0:44:05.160
<v Speaker 1>So what is the association with these different stages and

0:44:05.800 --> 0:44:10.360
<v Speaker 1>pain intensity or is there any association or with infertility

0:44:10.560 --> 0:44:11.720
<v Speaker 1>or subfertility.

0:44:12.000 --> 0:44:14.720
<v Speaker 2>Yeah, it's a really good question. There's not a solid

0:44:14.760 --> 0:44:20.520
<v Speaker 2>answer to that. In general, deeply infiltrating lesions are kind

0:44:20.560 --> 0:44:25.920
<v Speaker 2>of the worst as well as endometriomas, especially the ovarian

0:44:26.000 --> 0:44:32.920
<v Speaker 2>endometriomas are also associated with infertility. But the problem is

0:44:33.200 --> 0:44:39.440
<v Speaker 2>that just by looking at somebody's endometriosis, like during a surgery,

0:44:39.520 --> 0:44:44.040
<v Speaker 2>for example, you can't tell how bad their symptoms are

0:44:44.080 --> 0:44:48.640
<v Speaker 2>going to be so what it looks like doesn't correspond

0:44:48.800 --> 0:44:53.080
<v Speaker 2>very well with actual symptoms severity, which can be problematic,

0:44:53.520 --> 0:44:59.359
<v Speaker 2>very problematic. But of course the deeply infiltrating endometriosis has

0:44:59.400 --> 0:45:04.800
<v Speaker 2>the most potent to cause problems in other organs, for example.

0:45:05.320 --> 0:45:08.600
<v Speaker 2>But in terms of pain, which is kind of the

0:45:08.640 --> 0:45:14.160
<v Speaker 2>biggest symptom of endometriosis, any of the types can cause pain,

0:45:14.400 --> 0:45:16.879
<v Speaker 2>or any of the types might not be associated with pain,

0:45:18.520 --> 0:45:29.799
<v Speaker 2>So in that respect, it's difficult. In terms of pain, Uh, Aaron, Yeah,

0:45:30.520 --> 0:45:37.240
<v Speaker 2>So pain is classically like the hallmark symptom I guess

0:45:37.280 --> 0:45:43.080
<v Speaker 2>of endometriosis, and most classically it's dysmenorrhea, which is painful periods,

0:45:44.360 --> 0:45:48.160
<v Speaker 2>which sounds like, uh, that doesn't everyone have painful periods?

0:45:48.239 --> 0:45:48.839
<v Speaker 1>This is not.

0:45:50.440 --> 0:45:55.840
<v Speaker 2>So period pain. Typical period pain should not be so

0:45:56.080 --> 0:46:00.600
<v Speaker 2>bad that you are missing school, that you are miss work,

0:46:01.200 --> 0:46:03.759
<v Speaker 2>that you are laid out in your bed for an

0:46:03.880 --> 0:46:06.600
<v Speaker 2>entire week because you can't function as a human being.

0:46:07.600 --> 0:46:10.360
<v Speaker 2>And that's the kind of pain that is often associated

0:46:10.360 --> 0:46:14.440
<v Speaker 2>with endometriosis. You're not able to function because of how

0:46:14.520 --> 0:46:18.160
<v Speaker 2>much pain is associated with it. But it's not just

0:46:18.239 --> 0:46:25.319
<v Speaker 2>with menstruation. Especially as these endometrial implants sort of just

0:46:25.440 --> 0:46:29.799
<v Speaker 2>persist over time. It can also be dysperunea, which is

0:46:29.880 --> 0:46:33.640
<v Speaker 2>pain with penetrative sex, which can be hugely impactful on

0:46:33.680 --> 0:46:41.920
<v Speaker 2>somebody's life, pain with defecation, dyskesia, painful urination, just pain,

0:46:42.080 --> 0:46:47.040
<v Speaker 2>pain with everything, pain all the time, chronically. So but

0:46:47.120 --> 0:46:51.920
<v Speaker 2>here's the thing about pain. I'm probably not going to

0:46:52.000 --> 0:46:54.279
<v Speaker 2>do this justice, but I want to just briefly talk

0:46:54.280 --> 0:46:57.680
<v Speaker 2>about the neurobiology of pain. If we have time.

0:47:00.560 --> 0:47:02.279
<v Speaker 1>This is gonna be a long episode, but you know,

0:47:02.719 --> 0:47:05.520
<v Speaker 1>take a break if you need to come back to it.

0:47:05.680 --> 0:47:07.759
<v Speaker 2>Have a chocolate sistah.

0:47:08.000 --> 0:47:08.840
<v Speaker 1>Yeah.

0:47:09.200 --> 0:47:13.120
<v Speaker 2>So, pain at its core, Like the definition of pain,

0:47:13.800 --> 0:47:19.879
<v Speaker 2>I guess is when specific receptors, no susceptors are activated

0:47:20.320 --> 0:47:24.319
<v Speaker 2>and send signals to our brain, which are then interpreted

0:47:24.560 --> 0:47:27.480
<v Speaker 2>by the brain, processed in certain areas of the brain,

0:47:28.080 --> 0:47:33.080
<v Speaker 2>and then transmitted and we then experience pain. Like that's

0:47:33.080 --> 0:47:37.880
<v Speaker 2>a really general description of it. But there's a few

0:47:38.000 --> 0:47:42.760
<v Speaker 2>things about endometriosis pain and about chronic pain in general

0:47:42.800 --> 0:47:46.600
<v Speaker 2>that I think are really important to kind of understand. First,

0:47:47.520 --> 0:47:51.279
<v Speaker 2>studies have found that endometriotic implants, this endometriosis in your

0:47:51.320 --> 0:47:56.279
<v Speaker 2>abdomen often has higher densities of nerve fibers, so they're

0:47:56.320 --> 0:48:02.279
<v Speaker 2>more densely enervated than the surrounding tissue. They're also more

0:48:02.480 --> 0:48:07.600
<v Speaker 2>highly sensitized, so they actually respond at a lower threshold

0:48:07.719 --> 0:48:11.680
<v Speaker 2>of stimuli, which leads to both of those things combined

0:48:11.840 --> 0:48:16.640
<v Speaker 2>lead to an increase in pain signal transmission to the brain.

0:48:16.960 --> 0:48:21.759
<v Speaker 1>Yeah, it's just like efficiency in signals traveling. They're wait, oh,

0:48:21.760 --> 0:48:23.600
<v Speaker 1>I've gone down this route before. Oh I know how

0:48:23.640 --> 0:48:25.400
<v Speaker 1>to get there. Oh, exactly way.

0:48:25.640 --> 0:48:33.719
<v Speaker 2>Really, but also there are literally brain architecture changes that

0:48:33.920 --> 0:48:38.399
<v Speaker 2>happen with chronic pain, right, And this is something that

0:48:38.440 --> 0:48:41.920
<v Speaker 2>we do not fully understand, and people are finally just

0:48:42.080 --> 0:48:44.240
<v Speaker 2>now doing a lot of research.

0:48:43.880 --> 0:48:46.920
<v Speaker 1>On finally just now acknowledging that it might be.

0:48:46.960 --> 0:48:50.000
<v Speaker 2>Real, right, that it's not just psychosomatic, which is what

0:48:50.200 --> 0:48:52.880
<v Speaker 2>it was thought to be for the longest time. But

0:48:53.120 --> 0:48:55.040
<v Speaker 2>there are now a lot of really good studies on

0:48:55.080 --> 0:49:02.000
<v Speaker 2>this that the brain changes in relation to experience chronic pain.

0:49:02.640 --> 0:49:05.560
<v Speaker 2>And while there aren't as many studies on this in

0:49:05.600 --> 0:49:10.799
<v Speaker 2>relation to endometriosis related pain specifically or to pelvic pain specifically,

0:49:11.320 --> 0:49:14.239
<v Speaker 2>there are a few, and the ones that do exist

0:49:14.560 --> 0:49:17.520
<v Speaker 2>that have looked at people, for example, with dysmineria or

0:49:17.640 --> 0:49:22.440
<v Speaker 2>very painful periods. People who have chronic pelvic pain have

0:49:22.520 --> 0:49:27.640
<v Speaker 2>a lower peripheral input at which they experience pain and

0:49:27.680 --> 0:49:32.360
<v Speaker 2>a higher activity, higher activation of their central nervous system

0:49:32.440 --> 0:49:36.480
<v Speaker 2>in response to that pain. They are literally primed by

0:49:36.560 --> 0:49:42.200
<v Speaker 2>experiencing chronic pain to then experience more pain. Uh huh,

0:49:42.360 --> 0:49:44.640
<v Speaker 2>And yeah, I want to be clear that this is

0:49:44.760 --> 0:49:46.759
<v Speaker 2>not the same thing as saying like, well, you have

0:49:46.800 --> 0:49:50.520
<v Speaker 2>a low pain tolerance, right right, But that's not what

0:49:50.560 --> 0:49:54.600
<v Speaker 2>this means. This means that in response to pain, your

0:49:54.680 --> 0:49:59.800
<v Speaker 2>body reacts and changes and experiences a greater amount of

0:49:59.800 --> 0:50:03.760
<v Speaker 2>pain pain from the same stimuli as someone else because

0:50:03.800 --> 0:50:05.040
<v Speaker 2>of these changes to your brain.

0:50:05.719 --> 0:50:08.520
<v Speaker 1>It makes complete sense, and it's so frustrating that it's

0:50:08.800 --> 0:50:16.040
<v Speaker 1>frustrating not widely known about or understood or taught or researched.

0:50:15.760 --> 0:50:21.239
<v Speaker 2>Right yep. And it's also not saying, like I said,

0:50:21.239 --> 0:50:25.360
<v Speaker 2>that this pain is psychological in origin, because it's not. However,

0:50:25.640 --> 0:50:29.280
<v Speaker 2>it's also really important to point out just how comorbid

0:50:29.560 --> 0:50:34.920
<v Speaker 2>chronic pain conditions like endometriosis and mood disorders like depression

0:50:34.960 --> 0:50:40.720
<v Speaker 2>and anxiety are because this comorbidity having these two things

0:50:40.760 --> 0:50:46.160
<v Speaker 2>together leads to further exacerbation of the experience of pain

0:50:46.560 --> 0:50:51.759
<v Speaker 2>because of disruptions that depression or anxiety have on your

0:50:51.800 --> 0:50:52.480
<v Speaker 2>brain function.

0:50:53.160 --> 0:50:56.160
<v Speaker 1>Right, and I know that, like there has been a

0:50:56.200 --> 0:51:00.120
<v Speaker 1>lot of oh, well, you know your depression or anxiety

0:51:00.320 --> 0:51:06.000
<v Speaker 1>is probably causing you your chronic pain, instead of maybe

0:51:06.000 --> 0:51:12.200
<v Speaker 1>considering that it might be that persistent, never ending, excruciating,

0:51:12.719 --> 0:51:16.480
<v Speaker 1>inescapable pain might lead to I don't know, say a

0:51:16.480 --> 0:51:21.440
<v Speaker 1>bit of depression or anxiety, Like, couldn't that be the case? Yeah?

0:51:21.640 --> 0:51:23.960
<v Speaker 2>Yeah, and then both of those things change your brain

0:51:24.080 --> 0:51:27.320
<v Speaker 2>architecture to make them both worse, like a self fulfilling prophecy.

0:51:27.800 --> 0:51:28.400
<v Speaker 1>Uh huh.

0:51:28.520 --> 0:51:33.600
<v Speaker 2>Yeah, it's not great. Yeah, it's really not great. The

0:51:33.640 --> 0:51:39.360
<v Speaker 2>other biggest sequelle of endometriosis is infertility or difficulty conceiving.

0:51:40.840 --> 0:51:44.880
<v Speaker 2>And again here we don't know why. Huh really yeah,

0:51:44.920 --> 0:51:47.920
<v Speaker 2>we don't know if it's because of scar tissue that

0:51:47.960 --> 0:51:53.320
<v Speaker 2>can form, especially if it's from endometrioma's on the ovary,

0:51:53.680 --> 0:51:58.160
<v Speaker 2>like scarring the ovary or disrupting the number of ovarian

0:51:58.200 --> 0:52:01.600
<v Speaker 2>follicles that you have left, or if it can cause

0:52:01.640 --> 0:52:05.120
<v Speaker 2>scarring in the Filippian tubes, or there's some thought that

0:52:05.160 --> 0:52:09.520
<v Speaker 2>it's just from how much inflammation exists in the pelvis

0:52:10.040 --> 0:52:15.440
<v Speaker 2>because of endometriosis, because again, it's an open cavity between

0:52:15.600 --> 0:52:18.360
<v Speaker 2>your ovary and your Philippian tubes, so small space, but

0:52:18.440 --> 0:52:21.839
<v Speaker 2>it's all bathed in the same fluid. And so if

0:52:21.840 --> 0:52:25.520
<v Speaker 2>that fluid is full of inflammation, then how is that

0:52:25.600 --> 0:52:28.799
<v Speaker 2>egg supposed to make it safely into the uterus? Right,

0:52:29.440 --> 0:52:34.120
<v Speaker 2>So we don't really know the mechanisms, but endometriosis is

0:52:34.440 --> 0:52:38.040
<v Speaker 2>strongly associated with difficulty either getting pregnant or carrying a

0:52:38.040 --> 0:52:41.719
<v Speaker 2>pregnancy to term, but especially in getting pregnant. And let's

0:52:41.719 --> 0:52:44.520
<v Speaker 2>talk about something that can have a huge impact on

0:52:44.560 --> 0:52:48.480
<v Speaker 2>your mental and emotional well being, especially in a society

0:52:48.520 --> 0:52:53.440
<v Speaker 2>that often ties a uterus holder's worth to their ability

0:52:53.440 --> 0:52:57.959
<v Speaker 2>to conceive. Like, that's not small potatoes. That's a big deal, right, yep,

0:52:58.400 --> 0:53:00.840
<v Speaker 2>Yeah it is. What else do you want to know

0:53:00.840 --> 0:53:03.080
<v Speaker 2>about endometriosisarian, because that was a lot.

0:53:04.040 --> 0:53:08.160
<v Speaker 1>I mean, I would ask about treatment, but.

0:53:08.840 --> 0:53:11.560
<v Speaker 2>M want you want me to answer that, I'll will

0:53:11.600 --> 0:53:17.440
<v Speaker 2>answer it. Yeah, Okay, treatment is a mixed bag. Yeah,

0:53:17.640 --> 0:53:22.880
<v Speaker 2>So some people with endometriosis respond very well to hormonal

0:53:22.920 --> 0:53:28.480
<v Speaker 2>birth control, either combined contraceptives or something like an implant

0:53:28.560 --> 0:53:32.600
<v Speaker 2>or an iud, and that can be hugely beneficial. It

0:53:32.600 --> 0:53:36.040
<v Speaker 2>can lighten periods, it can make them stop altogether, it

0:53:36.080 --> 0:53:41.440
<v Speaker 2>can substantially reduce pelvic pain. But for anywhere from a

0:53:41.560 --> 0:53:44.719
<v Speaker 2>quarter to a third of people, that doesn't work at all,

0:53:45.520 --> 0:53:49.160
<v Speaker 2>or they can't even try it because of other comorbidities

0:53:49.239 --> 0:53:52.200
<v Speaker 2>or risk factors they might have, or maybe they want

0:53:52.200 --> 0:53:54.200
<v Speaker 2>to become pregnant.

0:53:53.880 --> 0:53:56.880
<v Speaker 1>Or maybe hormonal birth control pills have just never really

0:53:57.080 --> 0:54:00.319
<v Speaker 1>have messed with other parts of their right. There is

0:54:00.400 --> 0:54:01.240
<v Speaker 1>day to day life.

0:54:01.280 --> 0:54:04.480
<v Speaker 2>There's a lot of risk factors associated with birth control

0:54:04.600 --> 0:54:09.840
<v Speaker 2>as well. So for some then the next kind of

0:54:09.920 --> 0:54:15.759
<v Speaker 2>step can be what are called GnRH ganadotropin releasing hormone agonists,

0:54:16.600 --> 0:54:21.480
<v Speaker 2>which essentially put you into early menopause. That's what they do.

0:54:21.719 --> 0:54:24.760
<v Speaker 2>They block all of the hormones associated with the menstrual cycle,

0:54:24.840 --> 0:54:30.800
<v Speaker 2>like much more completely than combined contraceptives alone. But again

0:54:31.080 --> 0:54:35.440
<v Speaker 2>they have their very long list of side effects hot flashes,

0:54:35.520 --> 0:54:40.160
<v Speaker 2>skin changes, acne, mood changes. These can also affect your

0:54:40.160 --> 0:54:43.520
<v Speaker 2>bone mineralization and bone density, so they put you at

0:54:43.600 --> 0:54:47.399
<v Speaker 2>risk for like osteoporosis. And even these don't always work,

0:54:48.560 --> 0:54:53.240
<v Speaker 2>so then they're surgery, and surgery sometimes is still cited

0:54:53.320 --> 0:54:56.760
<v Speaker 2>as the kind of gold standard or the only quote

0:54:57.040 --> 0:55:03.160
<v Speaker 2>real way whatever to diagnose and on triosis, yeah, the

0:55:03.200 --> 0:55:06.120
<v Speaker 2>trend is moving away from that, thankfully, Okay, okay.

0:55:06.160 --> 0:55:08.480
<v Speaker 1>And how much does that vary country by country.

0:55:08.600 --> 0:55:10.839
<v Speaker 2>It's a good question that I don't know the answer.

0:55:10.520 --> 0:55:11.640
<v Speaker 1>To, Okay.

0:55:11.760 --> 0:55:16.360
<v Speaker 2>Yeah, But in general, the consensus in the medical literature

0:55:16.480 --> 0:55:21.040
<v Speaker 2>is moving away from surgery as a necessary diagnostic step,

0:55:22.000 --> 0:55:24.200
<v Speaker 2>because it used to be that you had to have

0:55:24.400 --> 0:55:28.799
<v Speaker 2>histological proof of endometrial tissue outside of the uterus to

0:55:28.880 --> 0:55:31.920
<v Speaker 2>call it endometriosis, and the only way you could get

0:55:31.960 --> 0:55:37.160
<v Speaker 2>that was from surgery. But now we have other methods

0:55:37.239 --> 0:55:40.080
<v Speaker 2>of being able to identify it, not only just with

0:55:40.200 --> 0:55:45.200
<v Speaker 2>like clinical history, but also with imaging modalities like MRI

0:55:45.480 --> 0:55:49.840
<v Speaker 2>and ultrasound, which can help to identify some kinds of endometriosis.

0:55:51.000 --> 0:55:54.640
<v Speaker 2>But surgery is often also seen as a treatment option,

0:55:55.760 --> 0:56:00.520
<v Speaker 2>So ablation or excision of the endometrio lesians and help

0:56:00.560 --> 0:56:04.319
<v Speaker 2>improve pain for a lot of people, but it can

0:56:04.400 --> 0:56:09.200
<v Speaker 2>also in some cases create more inflammation and more adhesions,

0:56:09.640 --> 0:56:13.880
<v Speaker 2>which can then exacerbate symptoms or possibly even lead to

0:56:14.000 --> 0:56:18.600
<v Speaker 2>more endometriosis lesions. If we think that it's inflammation that's

0:56:18.640 --> 0:56:20.800
<v Speaker 2>the driver rather than vice versa.

0:56:21.200 --> 0:56:21.839
<v Speaker 1>That makes sense.

0:56:21.920 --> 0:56:27.359
<v Speaker 2>Yeah, right. And hysterectomy or removal of the uterus with

0:56:27.560 --> 0:56:32.200
<v Speaker 2>or without removal of the ovaries along with it used

0:56:32.239 --> 0:56:34.719
<v Speaker 2>to be seen as curative, used to be done all

0:56:34.760 --> 0:56:39.480
<v Speaker 2>the time. Oh, still is done a lot. It is

0:56:39.760 --> 0:56:46.640
<v Speaker 2>not curative, but it is still done sometimes for people. So, yeah,

0:56:47.440 --> 0:56:51.520
<v Speaker 2>that's the treatment for endometriosis. It's not great. We don't

0:56:51.520 --> 0:56:53.800
<v Speaker 2>have a lot and especially when it comes to the pain.

0:56:54.800 --> 0:56:59.200
<v Speaker 2>Medicine today in twenty twenty one is bad at treating pain,

0:56:59.360 --> 0:57:01.919
<v Speaker 2>especially chronic pain. We don't have a lot of good

0:57:01.920 --> 0:57:07.439
<v Speaker 2>options for it. So that part of endometriosis is very

0:57:07.480 --> 0:57:14.320
<v Speaker 2>difficult if these other therapies aren't effective. So it's a bummer, Aaron.

0:57:15.239 --> 0:57:20.680
<v Speaker 1>I mean, it's infuriating, it is.

0:57:20.920 --> 0:57:24.720
<v Speaker 2>Yeah, And that was the longest biology section I've ever done.

0:57:25.280 --> 0:57:29.480
<v Speaker 1>How there's a lot to unback despite the fact that

0:57:29.520 --> 0:57:31.120
<v Speaker 1>we are still left with so many questions.

0:57:31.240 --> 0:57:33.280
<v Speaker 2>Right, we don't know anything, and yet I talked for

0:57:33.320 --> 0:57:37.600
<v Speaker 2>an hour, so erin, tell me all about it. How

0:57:37.600 --> 0:57:40.280
<v Speaker 2>did we get here? And why? Why?

0:57:40.800 --> 0:57:44.320
<v Speaker 1>Why? Yeah? I will start on the longest history section

0:57:44.800 --> 0:58:23.720
<v Speaker 1>right after this break. Before reading about endometriosis, I figured

0:58:23.760 --> 0:58:26.720
<v Speaker 1>that it would be one of those episodes that followed

0:58:26.760 --> 0:58:31.240
<v Speaker 1>like a relatively straightforward formula, like what evolutionary significance does

0:58:31.280 --> 0:58:34.520
<v Speaker 1>it have? When was it first written about or first

0:58:34.560 --> 0:58:38.200
<v Speaker 1>identified as a medical condition? Who discovered it? How has

0:58:38.200 --> 0:58:42.120
<v Speaker 1>our knowledge about the pathophysiology changed over the last hundred years,

0:58:42.640 --> 0:58:46.880
<v Speaker 1>and how have we gotten better at treating it? Yeah,

0:58:47.000 --> 0:58:49.560
<v Speaker 1>and it's true, I did come across a lot of

0:58:49.560 --> 0:58:53.800
<v Speaker 1>information while researching that would answer those questions and fit

0:58:53.920 --> 0:58:57.960
<v Speaker 1>into that formula, But as I read more, I felt

0:58:58.000 --> 0:59:01.000
<v Speaker 1>like that wasn't what I wanted to talk about. What

0:59:01.080 --> 0:59:04.520
<v Speaker 1>I found more compelling and in my opinion, more important,

0:59:04.880 --> 0:59:09.200
<v Speaker 1>was how the entire story of endometriosis kind of perfectly

0:59:09.440 --> 0:59:14.520
<v Speaker 1>encapsulates many aspects of misogyny and gender inequality in medicine,

0:59:14.960 --> 0:59:19.320
<v Speaker 1>and the implicit and explicit biases that often keep women

0:59:19.360 --> 0:59:25.400
<v Speaker 1>from getting the healthcare they need and deserve. So that's

0:59:25.760 --> 0:59:28.280
<v Speaker 1>what I'm going to talk a lot about today. Good,

0:59:28.960 --> 0:59:31.560
<v Speaker 1>and before I dive in, I want to briefly discuss

0:59:31.600 --> 0:59:36.080
<v Speaker 1>the language I'll be using. The story of endometriosis involves

0:59:36.160 --> 0:59:40.480
<v Speaker 1>aspects of both sex aka common biological differences between males

0:59:40.480 --> 0:59:44.640
<v Speaker 1>and females, as well as gender aka the socially constructed

0:59:44.720 --> 0:59:47.720
<v Speaker 1>roles that vary between gender and that people identify with.

0:59:48.880 --> 0:59:52.919
<v Speaker 1>And as you mentioned, Aaron, endometriosis can affect people who

0:59:53.040 --> 0:59:56.760
<v Speaker 1>don't identify as women. It can affect people assigned female, male,

0:59:56.880 --> 1:00:00.000
<v Speaker 1>or intersex at birth, and its label as a female

1:00:00.080 --> 1:00:03.720
<v Speaker 1>only or women's disease can be very damaging and can

1:00:03.760 --> 1:00:07.440
<v Speaker 1>delay diagnosis even further for those that don't fit the

1:00:07.440 --> 1:00:12.320
<v Speaker 1>description of a typical ENDO patient, whatever that means. But

1:00:12.920 --> 1:00:15.400
<v Speaker 1>much of what I'll be talking about today is a

1:00:15.480 --> 1:00:18.400
<v Speaker 1>gendered issue. It has to do with the way that

1:00:18.440 --> 1:00:22.360
<v Speaker 1>women are perceived in medicine and how that impacts their treatment.

1:00:23.160 --> 1:00:27.040
<v Speaker 1>The fact that endometriosis primarily occurs in people assigned female

1:00:27.080 --> 1:00:29.800
<v Speaker 1>at birth has given rise to many of the social

1:00:29.840 --> 1:00:35.120
<v Speaker 1>issues and medical disparities surrounding endometriosis. Many of these issues,

1:00:35.160 --> 1:00:39.440
<v Speaker 1>such as how people experiencing pain are perceived by medical providers,

1:00:39.880 --> 1:00:43.160
<v Speaker 1>are discussed in the literature and in scientific studies using

1:00:43.200 --> 1:00:46.880
<v Speaker 1>the terms men and women without saying whether they mean

1:00:46.960 --> 1:00:51.240
<v Speaker 1>sex or gender, but generally we're speaking referred to cisgender people.

1:00:52.080 --> 1:00:55.520
<v Speaker 1>This is definitely a huge limitation of these studies and

1:00:55.840 --> 1:00:59.040
<v Speaker 1>of this discussion as well, especially since there are many

1:00:59.080 --> 1:01:02.240
<v Speaker 1>ways that trans or gender non binary people are treated

1:01:02.280 --> 1:01:05.720
<v Speaker 1>differently than SIS people in medicine, often in ways that

1:01:05.800 --> 1:01:09.280
<v Speaker 1>negatively impact their health. And I'm going to try my

1:01:09.400 --> 1:01:13.160
<v Speaker 1>best to be inclusive and not to ignore the experiences

1:01:13.200 --> 1:01:16.400
<v Speaker 1>of those people or exclude them from this history. But

1:01:16.520 --> 1:01:20.840
<v Speaker 1>studies examining those aspects are scarcer, Yeah.

1:01:20.720 --> 1:01:24.080
<v Speaker 2>Like horrifically scarcer, as in almost non existent.

1:01:24.680 --> 1:01:30.880
<v Speaker 1>Basically, yeah, almost non existent. Okay, So let's dive in.

1:01:32.600 --> 1:01:35.560
<v Speaker 1>Like I said, I want to talk broadly about medical

1:01:35.600 --> 1:01:39.440
<v Speaker 1>bias against women and what that means for endometriosis. But

1:01:39.480 --> 1:01:41.640
<v Speaker 1>in order to do that, I should first tell you

1:01:41.760 --> 1:01:44.120
<v Speaker 1>a bit about the history of endometriosis.

1:01:44.240 --> 1:01:46.080
<v Speaker 2>Yeah, tell me a little right.

1:01:46.160 --> 1:01:52.960
<v Speaker 1>Evolution first, Why does endometriosis exist? I mean, I have

1:01:53.000 --> 1:01:56.560
<v Speaker 1>no idea, let's be clear, but you know I have

1:01:56.680 --> 1:02:01.080
<v Speaker 1>some food for thought. Maybe so. As you said, Aaron,

1:02:01.240 --> 1:02:06.320
<v Speaker 1>endometriosis is often associated with infertility or subfertility. And while

1:02:06.360 --> 1:02:10.320
<v Speaker 1>we don't have a complete grasp on what causes endometriosis,

1:02:10.880 --> 1:02:13.880
<v Speaker 1>like you said, Aaron, heredity does seem to play a part,

1:02:14.560 --> 1:02:17.240
<v Speaker 1>and many diseases are caused by a mixture of genetic

1:02:17.280 --> 1:02:20.520
<v Speaker 1>predisposition and environmental factors, and it seems like in the

1:02:20.520 --> 1:02:24.280
<v Speaker 1>case of endometriosis, I've read that it's about fifty percent

1:02:24.360 --> 1:02:26.720
<v Speaker 1>genes and fifty percent environmental factors.

1:02:26.880 --> 1:02:28.280
<v Speaker 2>Yeah, that's what I read as well.

1:02:28.720 --> 1:02:33.800
<v Speaker 1>Yeah, so it seems like it should be selected against

1:02:33.880 --> 1:02:36.280
<v Speaker 1>at least a little bit just by virtue of the

1:02:36.360 --> 1:02:40.160
<v Speaker 1>fact that people with endometriosis tend to be less likely

1:02:40.200 --> 1:02:44.040
<v Speaker 1>to pass on those alleles or the predisposition for ENDO.

1:02:44.720 --> 1:02:48.640
<v Speaker 1>But that's not what the numbers seem to show. And

1:02:48.680 --> 1:02:53.960
<v Speaker 1>as I'm sure you'll talk more about, endometriosis is incredibly common,

1:02:54.520 --> 1:02:58.960
<v Speaker 1>Like I've seen estimates from ten to fifteen percent, and

1:02:59.480 --> 1:03:03.680
<v Speaker 1>those frankly seem like they could be conservative estimates or underestimates,

1:03:03.720 --> 1:03:06.840
<v Speaker 1>because I'm sure many people with endometriosis never get a

1:03:06.880 --> 1:03:10.240
<v Speaker 1>diagnosis for any number of reasons, such as whether they

1:03:10.240 --> 1:03:12.400
<v Speaker 1>can afford to see a doctor, to take time off

1:03:12.400 --> 1:03:15.640
<v Speaker 1>work and find reliable transport to a doctor, or even

1:03:15.680 --> 1:03:18.200
<v Speaker 1>if they can see a doctor, maybe they're just dismissed

1:03:18.280 --> 1:03:21.800
<v Speaker 1>or called dramatic, or maybe they just don't know that

1:03:21.960 --> 1:03:26.720
<v Speaker 1>debilitating periods aren't normal because periods are a taboo discussion topic.

1:03:26.960 --> 1:03:29.400
<v Speaker 2>I feel like that's such an important one because it's

1:03:29.440 --> 1:03:33.080
<v Speaker 2>still so common today that people have no idea that

1:03:33.120 --> 1:03:36.640
<v Speaker 2>they don't have to exist or they shouldn't have to

1:03:36.760 --> 1:03:40.120
<v Speaker 2>exist in that much pain, Like that shouldn't be normal.

1:03:40.800 --> 1:03:46.640
<v Speaker 1>I mean even periods themselves. Do we need to have periods? Like, no, no,

1:03:46.760 --> 1:03:52.880
<v Speaker 1>we don't. It's very interesting anyway. So yeah, and then

1:03:52.960 --> 1:03:55.640
<v Speaker 1>of course, on top of all of those factors, there

1:03:55.680 --> 1:03:59.360
<v Speaker 1>are these racial and economic disparities in obtaining a diagnosis

1:03:59.360 --> 1:04:03.720
<v Speaker 1>that are very frustrating. Doesn't really begin to cover it.

1:04:03.800 --> 1:04:08.040
<v Speaker 1>But yeah, but whether it's ten to fifteen percent or

1:04:08.400 --> 1:04:14.720
<v Speaker 1>likely much higher, endometriosis is extremely prevalent, and again more

1:04:14.760 --> 1:04:17.520
<v Speaker 1>than it seems like it should be, maybe for something

1:04:17.520 --> 1:04:21.040
<v Speaker 1>that can affect fertility. But remember that it's not just

1:04:21.080 --> 1:04:24.280
<v Speaker 1>your genes determining whether or not you get endometriosis. It's

1:04:24.320 --> 1:04:28.680
<v Speaker 1>also environmental factors. And it turns out that endometriosis might

1:04:28.720 --> 1:04:33.480
<v Speaker 1>not deserve the reputation it has for causing infertility. So

1:04:33.680 --> 1:04:35.640
<v Speaker 1>it seems like in a lot of the literature and

1:04:35.840 --> 1:04:40.080
<v Speaker 1>estimate around thirty percent is often reported, but more recent

1:04:40.120 --> 1:04:44.200
<v Speaker 1>studies put it actually lower at about ten to thirteen percent.

1:04:44.920 --> 1:04:48.800
<v Speaker 2>Of people with endometriosis that will have infertility, got it right.

1:04:48.840 --> 1:04:51.680
<v Speaker 2>I think most of the most of this numbers that

1:04:51.720 --> 1:04:55.120
<v Speaker 2>I saw cited was like, of people with infertility, how

1:04:55.160 --> 1:04:58.160
<v Speaker 2>many of them have endometriosis, which is a very interesting

1:04:58.200 --> 1:05:00.360
<v Speaker 2>way to look at the statistics.

1:05:00.000 --> 1:05:03.480
<v Speaker 1>It is, yeah, but yeah, so it seems like this

1:05:03.560 --> 1:05:08.680
<v Speaker 1>reputation that endometriosis has for basically being a one to

1:05:08.760 --> 1:05:13.160
<v Speaker 1>one infertility is not necessarily yeah the case. And I

1:05:13.200 --> 1:05:16.720
<v Speaker 1>also read a couple of papers that proposed an evolutionary

1:05:16.800 --> 1:05:21.320
<v Speaker 1>explanation for endometriosis. So I will admit I feel a

1:05:21.360 --> 1:05:23.520
<v Speaker 1>little bit out of my depth here, but I'm going

1:05:23.600 --> 1:05:27.400
<v Speaker 1>to just attempt to do my best. Essentially, in these papers,

1:05:27.440 --> 1:05:31.200
<v Speaker 1>which were from twenty twenty one, the authors suggested that

1:05:31.320 --> 1:05:36.160
<v Speaker 1>endometriosis and polycystic ovarian syndrome are opposites. Did you know

1:05:36.280 --> 1:05:36.640
<v Speaker 1>this paper?

1:05:36.720 --> 1:05:38.560
<v Speaker 2>I saw that paper and I was like, ooh, what's

1:05:38.600 --> 1:05:41.760
<v Speaker 2>this baby? Interesting? Or and interesting?

1:05:42.320 --> 1:05:46.680
<v Speaker 1>Mm hmmm mm hmmm. And so endo and PCOS are

1:05:46.720 --> 1:05:49.680
<v Speaker 1>at these like two extremes of a spectrum. This is

1:05:49.680 --> 1:05:55.240
<v Speaker 1>what the author suggested that is determined by levels of

1:05:55.520 --> 1:06:01.520
<v Speaker 1>prenatal testosterone exposure, with high prenatal levels equaling pcos and

1:06:01.600 --> 1:06:07.000
<v Speaker 1>low prenatal levels equaling endometriosis. So during development, if a

1:06:07.000 --> 1:06:10.080
<v Speaker 1>fetus is exposed to levels of testosterone that are outside

1:06:10.200 --> 1:06:14.040
<v Speaker 1>the quote normal range, certain traits associated with fertility or

1:06:14.080 --> 1:06:18.400
<v Speaker 1>fecundity are brought to their extremes. And the way that

1:06:18.480 --> 1:06:21.120
<v Speaker 1>I started thinking about this was like too much of

1:06:21.160 --> 1:06:25.440
<v Speaker 1>a good thing. So individually, these traits might be helpful

1:06:25.640 --> 1:06:29.360
<v Speaker 1>for fertility, but when you have too many of those

1:06:29.400 --> 1:06:32.680
<v Speaker 1>traits or they are expressed too highly, it can be hurtful.

1:06:33.360 --> 1:06:36.960
<v Speaker 1>So something like uterine contractions, it's great for when you

1:06:37.000 --> 1:06:39.960
<v Speaker 1>have fetus with a big head in there, but horrible

1:06:40.040 --> 1:06:42.240
<v Speaker 1>for when you have menstrual cramps that lay you flat.

1:06:43.320 --> 1:06:48.160
<v Speaker 1>Or like inflammation. Right, high levels like inflammation is good,

1:06:48.240 --> 1:06:51.240
<v Speaker 1>it helped what keeps us healthy. To high levels of

1:06:51.240 --> 1:06:56.160
<v Speaker 1>inflammation can be really, really bad. So taking all that together,

1:06:56.480 --> 1:06:59.600
<v Speaker 1>I feel like we can start to see why endometriosis

1:06:59.640 --> 1:07:02.720
<v Speaker 1>exists and why we see it in fairly prevalent numbers today.

1:07:03.320 --> 1:07:07.000
<v Speaker 1>So my next question is do we have more endo

1:07:07.080 --> 1:07:10.200
<v Speaker 1>today than we've had in the past. How long has

1:07:10.280 --> 1:07:15.880
<v Speaker 1>endometriosis been around. Endometriosis often gets called a modern disease

1:07:16.000 --> 1:07:18.680
<v Speaker 1>or a modern epidemic. Did you come across papers describing

1:07:18.680 --> 1:07:19.080
<v Speaker 1>it that way?

1:07:19.240 --> 1:07:21.200
<v Speaker 2>No, but I'm not surprised, Okay.

1:07:22.160 --> 1:07:27.080
<v Speaker 1>I don't like this for a number of reasons. First,

1:07:27.320 --> 1:07:30.480
<v Speaker 1>I don't love the term modern epidemic to describe endometriosis

1:07:30.600 --> 1:07:33.360
<v Speaker 1>because I'm not convinced that we have enough data about

1:07:33.400 --> 1:07:36.720
<v Speaker 1>historical rates to say whether there's an actual increase or

1:07:36.760 --> 1:07:38.360
<v Speaker 1>if it's just that we're more aware of it so

1:07:38.400 --> 1:07:42.400
<v Speaker 1>it's diagnosed more often. Second, is that calling it a

1:07:42.400 --> 1:07:46.200
<v Speaker 1>modern disease implies that it has emerged only recently, which

1:07:46.240 --> 1:07:51.200
<v Speaker 1>is untrue. Humans have probably been experiencing endometriosis for millennia,

1:07:51.360 --> 1:07:54.400
<v Speaker 1>as I'll get into and some people who defend the

1:07:54.520 --> 1:07:58.240
<v Speaker 1>use of the term modern to describe endometriosis say that

1:07:58.280 --> 1:08:01.200
<v Speaker 1>it's because it was only defeat find as a clinical

1:08:01.360 --> 1:08:03.600
<v Speaker 1>entity within the past one hundred to one hundred and

1:08:03.640 --> 1:08:08.000
<v Speaker 1>fifty years, and that definitive diagnosis by examining tissue under

1:08:08.000 --> 1:08:11.120
<v Speaker 1>a microscope was only possible in the last one hundred years.

1:08:12.320 --> 1:08:17.440
<v Speaker 1>So despite the existence of ancient medical texts describing abnormal

1:08:17.439 --> 1:08:22.160
<v Speaker 1>bleeding associated with pelvic pain, and infertility. Those descriptions apparently

1:08:22.200 --> 1:08:26.400
<v Speaker 1>aren't specific enough to be called endometriosis, which I'll grant

1:08:26.640 --> 1:08:30.160
<v Speaker 1>is fair. Retrospective diagnosis is always a.

1:08:30.080 --> 1:08:32.599
<v Speaker 2>Problem, Yeah, and there's a lot of things that can

1:08:32.680 --> 1:08:34.679
<v Speaker 2>cause pelvic plane and abnormal bleeding.

1:08:35.160 --> 1:08:40.040
<v Speaker 1>Absolutely, but I still think it's misleading to call endometriosis modern.

1:08:40.160 --> 1:08:41.960
<v Speaker 2>I agree because I feel like.

1:08:41.920 --> 1:08:44.800
<v Speaker 1>By that definition, there are a whole lot of diseases

1:08:44.840 --> 1:08:48.439
<v Speaker 1>that have likely been with humans for millennia, but quote

1:08:48.520 --> 1:08:52.800
<v Speaker 1>discovered only recently. Does a disease exist only when it's

1:08:52.840 --> 1:08:56.920
<v Speaker 1>been given a name and a clinical description, No, of course.

1:08:56.960 --> 1:09:04.240
<v Speaker 1>Not that said, it is possible that endometriosis is on

1:09:04.320 --> 1:09:07.280
<v Speaker 1>the rise, and we should look to see if it is,

1:09:07.320 --> 1:09:09.439
<v Speaker 1>and if it is the case, we should obviously try

1:09:09.479 --> 1:09:14.519
<v Speaker 1>to find out why. But endometriosis is an ancient disease.

1:09:15.479 --> 1:09:18.760
<v Speaker 1>There are descriptions of painful menstruation which could be endo,

1:09:19.080 --> 1:09:23.280
<v Speaker 1>dating back to eighteen fifty five BCE from ancient Egypt

1:09:23.880 --> 1:09:27.080
<v Speaker 1>and then again in ancient Greece in the Hippocratic text

1:09:27.080 --> 1:09:31.639
<v Speaker 1>from the fifth and fourth centuries BCE, describing menstrual dysfunction

1:09:32.040 --> 1:09:36.040
<v Speaker 1>as a cause of disease with pain and infertility. Resulting

1:09:36.120 --> 1:09:40.679
<v Speaker 1>if left untreated, and pregnancy as a possible cure, which,

1:09:41.080 --> 1:09:45.519
<v Speaker 1>despite not being true not being a cure, is often

1:09:45.680 --> 1:09:51.400
<v Speaker 1>still recommended today. In fact, I read in one book

1:09:52.120 --> 1:09:56.040
<v Speaker 1>for this episode that somebody commented on a Facebook page

1:09:56.120 --> 1:10:00.839
<v Speaker 1>for a group called Endoactive about this quote. My doctor

1:10:00.880 --> 1:10:04.280
<v Speaker 1>told me having a baby would help my pain. I'm

1:10:04.320 --> 1:10:10.719
<v Speaker 1>only eleven. What uh huh yeah?

1:10:10.960 --> 1:10:15.040
<v Speaker 2>Oh no, mm hm oh.

1:10:14.439 --> 1:10:20.599
<v Speaker 1>No erin, yeah, I've been mad for oh time. I've

1:10:20.600 --> 1:10:21.519
<v Speaker 1>been researching this.

1:10:21.720 --> 1:10:23.080
<v Speaker 2>I'm not going to get over that one.

1:10:23.520 --> 1:10:30.120
<v Speaker 1>I know, I know. Yeah. So In these hippocratic texts

1:10:30.280 --> 1:10:33.880
<v Speaker 1>are also the descriptions of the group's most susceptible to

1:10:34.040 --> 1:10:40.439
<v Speaker 1>these gynecological disorders, women who remained childless, young widows, and

1:10:40.560 --> 1:10:44.960
<v Speaker 1>virgins who had already menstruated but remained unmarried, some of

1:10:45.000 --> 1:10:48.200
<v Speaker 1>which sounds disturbingly familiar to the nickname that was given

1:10:48.200 --> 1:10:51.719
<v Speaker 1>to endometriosis in the nineteen sixties to the nineteen eighties

1:10:51.840 --> 1:10:55.360
<v Speaker 1>or so. The quote career woman's disease.

1:10:55.720 --> 1:10:58.040
<v Speaker 2>Oh my god. I saw that in one paper and

1:10:58.080 --> 1:11:00.599
<v Speaker 2>I barfed in my mouth. I don't.

1:11:01.640 --> 1:11:04.880
<v Speaker 1>Basically, it's like, well, you put off your child bearing

1:11:04.960 --> 1:11:08.320
<v Speaker 1>duties and rejected your social and gender role. So this

1:11:08.360 --> 1:11:09.080
<v Speaker 1>is what you get.

1:11:09.240 --> 1:11:10.960
<v Speaker 2>It's the natural consequence.

1:11:11.400 --> 1:11:15.639
<v Speaker 1>Uh huh. Obviously, the Hippocratic texts didn't refer to these

1:11:15.680 --> 1:11:20.599
<v Speaker 1>symptoms as endometriosis or as even like one specific disease,

1:11:21.320 --> 1:11:24.920
<v Speaker 1>but rather they were part of what was called hysteria,

1:11:25.360 --> 1:11:29.000
<v Speaker 1>after the Greek word for the uterus. And I'll talk

1:11:29.040 --> 1:11:32.280
<v Speaker 1>more about the history of hysteria and its wandering definitions

1:11:32.320 --> 1:11:35.160
<v Speaker 1>in a bit, but first I want to wrap up

1:11:35.240 --> 1:11:38.519
<v Speaker 1>the history of endometriosis. Even though they are tied together,

1:11:39.040 --> 1:11:44.479
<v Speaker 1>so many people who were diagnosed with hysteria probably had endo. Anyway,

1:11:44.680 --> 1:11:49.200
<v Speaker 1>from those ancient texts describing pain during menstruation and abnormal periods,

1:11:49.320 --> 1:11:51.559
<v Speaker 1>there doesn't really seem to be a ton of other

1:11:51.640 --> 1:11:56.360
<v Speaker 1>mentions of what could be endometriosis, not because people weren't

1:11:56.360 --> 1:12:01.320
<v Speaker 1>experiencing it, but likely because there was and is a

1:12:01.640 --> 1:12:08.320
<v Speaker 1>huge taboo surrounding menstruation. From Leviticus in the Old Testament quote,

1:12:08.960 --> 1:12:11.639
<v Speaker 1>if a woman has a discharge, and the discharge from

1:12:11.680 --> 1:12:14.960
<v Speaker 1>her body is blood, she shall be set apart seven days,

1:12:15.080 --> 1:12:20.040
<v Speaker 1>and whoever touches her shall be unclean until evening. Fast

1:12:20.080 --> 1:12:24.760
<v Speaker 1>forward to the first time that the word period was

1:12:24.800 --> 1:12:29.479
<v Speaker 1>said on television, like you know, like menstrual period nineteen

1:12:29.560 --> 1:12:34.440
<v Speaker 1>eighty five no Way by Courtney Cox in a tampon commercial.

1:12:35.120 --> 1:12:38.120
<v Speaker 2>Wow, uh huh, so I'm sorry before that they had

1:12:38.120 --> 1:12:40.640
<v Speaker 2>tampon commercials without saying the word period.

1:12:40.600 --> 1:12:42.080
<v Speaker 1>Or did they have tampon commercials?

1:12:42.120 --> 1:12:43.400
<v Speaker 2>Maybe they didn't have tampons.

1:12:46.160 --> 1:12:48.240
<v Speaker 1>The history of the tampon would be a fascinating one

1:12:48.280 --> 1:12:49.000
<v Speaker 1>to research.

1:12:49.240 --> 1:12:52.560
<v Speaker 2>There is so we haven't even done just like regular menstruation.

1:12:53.040 --> 1:12:56.559
<v Speaker 2>I know, I know, you know anyways.

1:12:56.240 --> 1:12:59.840
<v Speaker 1>Anyways, but we have been conditioned to think of periods,

1:13:00.160 --> 1:13:06.360
<v Speaker 1>these absolutely normal things, as gross and shameful when they

1:13:06.360 --> 1:13:10.400
<v Speaker 1>are neither, and that stigma surrounding periods can lead to

1:13:10.439 --> 1:13:14.559
<v Speaker 1>this damaging silence where because we are shamed from talking

1:13:14.640 --> 1:13:19.320
<v Speaker 1>about periods because it's not polite conversation, we don't know

1:13:19.360 --> 1:13:23.080
<v Speaker 1>whether our own periods are normal because we don't hear

1:13:23.200 --> 1:13:24.920
<v Speaker 1>the experiences of others.

1:13:25.240 --> 1:13:25.360
<v Speaker 2>Right.

1:13:26.880 --> 1:13:30.280
<v Speaker 1>The persistent labeling of menstrual periods as a distasteful and

1:13:30.400 --> 1:13:34.960
<v Speaker 1>shameful subject has profound implications for public health, and it

1:13:35.040 --> 1:13:40.160
<v Speaker 1>creates enormous inequities for people who menstruate. In most states, tampons,

1:13:40.240 --> 1:13:43.800
<v Speaker 1>for example, are subject to sales tax and Also, in

1:13:43.840 --> 1:13:49.920
<v Speaker 1>most states prisons charge inmates for menstrual products. I know,

1:13:50.080 --> 1:13:54.080
<v Speaker 1>there's just so much, so much, There's so much. But

1:13:54.160 --> 1:13:57.120
<v Speaker 1>circling back to the history part of this, maybe the

1:13:57.200 --> 1:14:01.400
<v Speaker 1>reason that endometriosis doesn't show up very much until basically

1:14:01.400 --> 1:14:05.360
<v Speaker 1>the eighteen hundreds is because the people writing medical texts

1:14:05.400 --> 1:14:08.680
<v Speaker 1>were primarily men, most of whom would have considered it

1:14:08.800 --> 1:14:13.240
<v Speaker 1>deeply improper and probably gross to ask a woman about

1:14:13.240 --> 1:14:19.160
<v Speaker 1>her periods. It's absolutely possible and likely that women discuss

1:14:19.240 --> 1:14:23.040
<v Speaker 1>periods amongst themselves, and there was probably a great deal

1:14:23.080 --> 1:14:26.599
<v Speaker 1>of knowledge held by women healers, which was mostly lost

1:14:26.640 --> 1:14:30.680
<v Speaker 1>as medical licensing laws came into effect, which both prohibited

1:14:30.720 --> 1:14:36.080
<v Speaker 1>them from practicing reasonable licenses are good and even applying

1:14:36.280 --> 1:14:39.679
<v Speaker 1>to medical school. If you weren't a white, wealthy man,

1:14:39.840 --> 1:14:44.640
<v Speaker 1>you weren't getting in. But with the increasing popularity of

1:14:44.720 --> 1:14:48.720
<v Speaker 1>autopsies in the nineteenth century, people begin linking more and

1:14:48.880 --> 1:14:52.640
<v Speaker 1>more signs and symptoms of disease with pathological changes in

1:14:52.680 --> 1:14:57.360
<v Speaker 1>the body. Karl Vaughan Rokotansky, whose name you may remember

1:14:57.520 --> 1:15:02.240
<v Speaker 1>from our pupil Fever episode, he was friends with and

1:15:02.280 --> 1:15:04.880
<v Speaker 1>worked at the same hospital as Semmelweis and he was

1:15:05.000 --> 1:15:09.040
<v Speaker 1>like the King of autopsies. He performed an incredible number

1:15:09.040 --> 1:15:13.679
<v Speaker 1>of autopsies. Rokitansky is usually credited with being the first

1:15:13.920 --> 1:15:18.840
<v Speaker 1>person to describe endometrio lesions. In the eighteen sixties, he

1:15:18.880 --> 1:15:22.479
<v Speaker 1>published a paper where he wrote that quote some fibrous

1:15:22.479 --> 1:15:26.240
<v Speaker 1>tumors of the uterus contained glandi like structures that resemble

1:15:26.400 --> 1:15:31.200
<v Speaker 1>endometrio glands end quote YEA. And there was a series

1:15:31.240 --> 1:15:34.919
<v Speaker 1>of autopsy studies done by other physicians from England, Germany,

1:15:35.040 --> 1:15:37.960
<v Speaker 1>Holland and Scotland also in the eighteen hundreds that went

1:15:38.120 --> 1:15:42.960
<v Speaker 1>further than Rokitansky to characterize the disease. But it wasn't

1:15:43.040 --> 1:15:45.800
<v Speaker 1>until nineteen twenty one that it was given the name

1:15:45.920 --> 1:15:50.960
<v Speaker 1>endometriosis by John Sampson, who is an American gynecologist who

1:15:51.040 --> 1:15:54.559
<v Speaker 1>also did the first systematic study of the disease and

1:15:54.720 --> 1:15:58.120
<v Speaker 1>proposed a hypothesis that is still the most popular today,

1:15:58.960 --> 1:16:06.040
<v Speaker 1>the mensru Back hypothesis. The papers published by Samson marked

1:16:06.080 --> 1:16:09.800
<v Speaker 1>a turning point in the history of endometriosis. They turned

1:16:09.800 --> 1:16:13.720
<v Speaker 1>it from a medical curiosity into a clinical entity, and

1:16:13.800 --> 1:16:16.200
<v Speaker 1>now that it had a name, it meant that information

1:16:16.280 --> 1:16:20.360
<v Speaker 1>could be compiled and shared under that name. Receiving a

1:16:20.400 --> 1:16:24.680
<v Speaker 1>diagnosis itself didn't do much good similar to today, in

1:16:24.720 --> 1:16:28.880
<v Speaker 1>many cases and often did harm because, like you said, Aaron,

1:16:29.400 --> 1:16:32.920
<v Speaker 1>usually a complete removal of the uterus was suggested as

1:16:32.920 --> 1:16:38.000
<v Speaker 1>the only effective treatment. A couple of decades after Samson's papers,

1:16:38.600 --> 1:16:43.840
<v Speaker 1>endometriosis of the lungs, large bowel, colon, rectum, bladder, lymph node, cervix,

1:16:44.000 --> 1:16:47.560
<v Speaker 1>round ligaments, and so on had been reported, and physicians

1:16:47.560 --> 1:16:50.200
<v Speaker 1>began to realize that it was a lot more prevalent

1:16:50.240 --> 1:16:53.639
<v Speaker 1>than Samson had thought, who described it as a rare disease.

1:16:55.200 --> 1:16:58.640
<v Speaker 1>Laparoscopic surgery began to be more regularly used for the

1:16:58.680 --> 1:17:02.280
<v Speaker 1>removal of lesions starting in around the late nineteen seventies

1:17:02.360 --> 1:17:07.120
<v Speaker 1>early nineteen eighties, But frankly, is as you went over,

1:17:07.800 --> 1:17:10.320
<v Speaker 1>not a whole lot of progress seems to have been

1:17:10.360 --> 1:17:15.120
<v Speaker 1>made since. Like, yes, we know more about endometriosis now

1:17:15.200 --> 1:17:18.280
<v Speaker 1>than we did one hundred years ago, but we're still

1:17:18.280 --> 1:17:22.679
<v Speaker 1>limited in treatment and hugely lacking in awareness among both

1:17:22.760 --> 1:17:26.760
<v Speaker 1>medical professionals as well as the general public, which has

1:17:26.880 --> 1:17:31.640
<v Speaker 1>led in part to the ridiculous delay in endometriosis diagnosis.

1:17:31.760 --> 1:17:34.479
<v Speaker 1>I mean, I've seen estimates of six to twelve years.

1:17:35.200 --> 1:17:38.719
<v Speaker 2>Yeah, I've seen even higher sometimes like ten to fifteen

1:17:38.840 --> 1:17:42.280
<v Speaker 2>years lag between symptoms and diagnosis, right.

1:17:42.360 --> 1:17:45.920
<v Speaker 1>And this delay is of course not equal across racial

1:17:45.920 --> 1:17:48.360
<v Speaker 1>and economic groups, with people of color and those in

1:17:48.400 --> 1:17:53.240
<v Speaker 1>lower economic classes experiencing a much longer delay. So what

1:17:53.320 --> 1:17:56.320
<v Speaker 1>I wanted to take time to explore in more depth

1:17:56.960 --> 1:18:01.720
<v Speaker 1>was why this damaging diagnostic delay exists. Why is it

1:18:01.920 --> 1:18:06.519
<v Speaker 1>six to twelve years or ten to fifteen years. Why

1:18:06.760 --> 1:18:10.760
<v Speaker 1>do we still not seem to know very much about endometriosis,

1:18:10.960 --> 1:18:13.160
<v Speaker 1>what causes it, how to treat it, why do some

1:18:13.200 --> 1:18:17.640
<v Speaker 1>people get it and others don't? And exploring those questions

1:18:18.080 --> 1:18:20.640
<v Speaker 1>kind of led me into reading more generally about the

1:18:20.680 --> 1:18:24.719
<v Speaker 1>pervasive mistreatment and under treatment of women by the medical system.

1:18:25.840 --> 1:18:27.839
<v Speaker 1>Right off the bat, I want to mention the books

1:18:27.840 --> 1:18:30.439
<v Speaker 1>that I read for this because I'll probably be quoting

1:18:30.479 --> 1:18:33.519
<v Speaker 1>from them a lot, one in particular, and they are

1:18:33.720 --> 1:18:36.599
<v Speaker 1>phenomenal and I learned so much and got so angry

1:18:37.160 --> 1:18:43.040
<v Speaker 1>along the way. Doing Harm by Maya duson Berry and

1:18:43.240 --> 1:18:46.679
<v Speaker 1>Pain and Prejudice by Gabrielle Jackson are both nonfiction books

1:18:46.680 --> 1:18:50.120
<v Speaker 1>about the systemic issues in medicine and how women are treated.

1:18:50.920 --> 1:18:53.760
<v Speaker 1>Ask me About My Uterus by Abbie Norman and Giving

1:18:53.840 --> 1:18:57.200
<v Speaker 1>Up the Ghost by Hillary Mantel are memoirs about endometriosis.

1:18:57.680 --> 1:19:01.480
<v Speaker 1>Hillary Mantel's book includes a section on her experience with enemytriosis.

1:19:01.479 --> 1:19:05.320
<v Speaker 1>It's not entirely about endo. I loved them all and

1:19:05.720 --> 1:19:09.280
<v Speaker 1>you should read them all, Okay. So the way that

1:19:09.320 --> 1:19:13.000
<v Speaker 1>I wanted to structure this discussion is taken directly from

1:19:13.040 --> 1:19:18.040
<v Speaker 1>Maya Dusenberry's Doing Harm. In this incredible book, she lays

1:19:18.040 --> 1:19:21.120
<v Speaker 1>out what she calls the knowledge gap and the trust gap.

1:19:22.160 --> 1:19:25.280
<v Speaker 1>The knowledge gap is basically that there isn't as much

1:19:25.320 --> 1:19:29.240
<v Speaker 1>scientific and medical knowledge about women's bodies and health issues

1:19:29.520 --> 1:19:32.519
<v Speaker 1>than there is about men's. And this goes all the

1:19:32.520 --> 1:19:36.599
<v Speaker 1>way from the very basic biomedical research only including male

1:19:36.640 --> 1:19:40.840
<v Speaker 1>animals and studies all the way to women being underrepresented

1:19:40.880 --> 1:19:45.839
<v Speaker 1>in clinical trials and diseases specific to women receiving less funding.

1:19:47.840 --> 1:19:51.840
<v Speaker 1>The trust gap is simply that quote women's accounts of

1:19:51.880 --> 1:19:56.960
<v Speaker 1>their symptoms are too often not believed. The trust gap

1:19:57.000 --> 1:20:00.400
<v Speaker 1>and the knowledge gap don't operate independently. They rea enforce

1:20:00.479 --> 1:20:03.439
<v Speaker 1>each other to perpetuate the mistreatment and under treatment of

1:20:03.479 --> 1:20:09.040
<v Speaker 1>women by the medical system. Quote from Dusomberry, women's symptoms

1:20:09.080 --> 1:20:12.519
<v Speaker 1>are not taken seriously because medicine doesn't know as much

1:20:12.560 --> 1:20:16.120
<v Speaker 1>about their bodies and health problems. And medicine doesn't know

1:20:16.360 --> 1:20:18.960
<v Speaker 1>as much about their bodies and health problems because it

1:20:19.000 --> 1:20:25.719
<v Speaker 1>doesn't take their symptoms seriously end quote. Dusomberry points out

1:20:25.760 --> 1:20:29.000
<v Speaker 1>that these issues aren't about a few bad apples in

1:20:29.040 --> 1:20:33.040
<v Speaker 1>the medical system mistreating women, but rather the unconscious bias

1:20:33.080 --> 1:20:38.240
<v Speaker 1>that is structurally embedded in medicine. So let's explore these

1:20:38.280 --> 1:20:41.280
<v Speaker 1>two facets in a bit more depth, starting with the

1:20:41.320 --> 1:20:46.200
<v Speaker 1>knowledge gap. As with any structurally embedded issue we discuss

1:20:46.280 --> 1:20:50.080
<v Speaker 1>on the podcast, the knowledge gap has deep roots, stemming

1:20:50.160 --> 1:20:52.599
<v Speaker 1>from the hundreds of years during which women were seen

1:20:52.600 --> 1:20:56.080
<v Speaker 1>as biologically inferior to men and whose bodies were either

1:20:56.200 --> 1:21:00.799
<v Speaker 1>not worthy of study or improper to examine. They were studied,

1:21:00.960 --> 1:21:04.320
<v Speaker 1>for instance, by the so called father of gynecology, Mary

1:21:04.360 --> 1:21:06.840
<v Speaker 1>and Simms, who built the profession on the backs of

1:21:06.920 --> 1:21:11.960
<v Speaker 1>enslaved women. They were essentially tortured, given no anesthesia or

1:21:12.000 --> 1:21:16.840
<v Speaker 1>pain relief, seen to be subhuman. The ideal baseline that

1:21:16.920 --> 1:21:21.439
<v Speaker 1>defined what was medically quote normal or human was a

1:21:21.439 --> 1:21:24.559
<v Speaker 1>white adult male, and let's be honest, a wealthy one.

1:21:25.600 --> 1:21:28.200
<v Speaker 1>This is pretty clear when we look at how menstrual

1:21:28.200 --> 1:21:31.600
<v Speaker 1>periods were described in medical texts throughout the eighteen hundreds

1:21:31.880 --> 1:21:38.440
<v Speaker 1>as times of ill health. Anytime a woman was either pregnant, menstruating,

1:21:38.720 --> 1:21:42.519
<v Speaker 1>or in menopause, she was considered unwell and her thoughts

1:21:42.640 --> 1:21:47.040
<v Speaker 1>scattered and disturbed, which was used in arguments against women

1:21:47.120 --> 1:21:51.720
<v Speaker 1>being allowed to attend universities and higher education. Anyway, was

1:21:51.760 --> 1:21:53.479
<v Speaker 1>thought to atrophy the uterus.

1:21:54.400 --> 1:22:00.040
<v Speaker 2>Atrophy the uterus. I can't have that absolutely though. Brain thinking.

1:22:02.200 --> 1:22:05.480
<v Speaker 1>And this perception of periods, of course, didn't just disappear

1:22:05.479 --> 1:22:10.080
<v Speaker 1>suddenly in nineteen hundred. There's even a textbook from the

1:22:10.160 --> 1:22:15.120
<v Speaker 1>nineteen seventies that describes dysmenorrhea as a symptom of a

1:22:15.160 --> 1:22:16.439
<v Speaker 1>personality disorder.

1:22:18.720 --> 1:22:21.400
<v Speaker 2>I don't have any words. I'm just going to keep

1:22:21.600 --> 1:22:22.479
<v Speaker 2>fish mouthing over.

1:22:25.800 --> 1:22:28.920
<v Speaker 1>So that just made me think that there are probably

1:22:29.400 --> 1:22:32.879
<v Speaker 1>some physicians still practicing today that may have been trained

1:22:33.120 --> 1:22:34.240
<v Speaker 1>on that information.

1:22:34.800 --> 1:22:39.560
<v Speaker 2>Oh definitely, yeah.

1:22:38.160 --> 1:22:42.439
<v Speaker 1>Up until at least the nineteen nineties. Although you could argue,

1:22:42.760 --> 1:22:46.400
<v Speaker 1>probably successfully that it's still the case today. It wasn't

1:22:46.439 --> 1:22:49.280
<v Speaker 1>that science knew nothing about women's bodies and health. It

1:22:49.320 --> 1:22:51.320
<v Speaker 1>was just that they knew a lot less than they

1:22:51.400 --> 1:22:54.840
<v Speaker 1>did about men's and let's look at why this is.

1:22:55.640 --> 1:22:58.800
<v Speaker 1>As I mentioned earlier, the medical licensing laws enacted in

1:22:58.840 --> 1:23:01.960
<v Speaker 1>the eighteen hundreds in effect excluded women and people of

1:23:02.000 --> 1:23:06.000
<v Speaker 1>color from practicing medicine and contributing to the field. Those

1:23:06.040 --> 1:23:09.240
<v Speaker 1>that remained were white, wealthy men, and so a white

1:23:09.240 --> 1:23:12.120
<v Speaker 1>male as the baseline for comparison, and the health ideal

1:23:12.200 --> 1:23:16.080
<v Speaker 1>became entrenched in medical training and medical knowledge well into

1:23:16.080 --> 1:23:20.679
<v Speaker 1>the twentieth century. The nineteen sixties and nineteen seventies saw

1:23:20.720 --> 1:23:23.600
<v Speaker 1>a great deal of change in terms of medical ethics,

1:23:23.640 --> 1:23:28.640
<v Speaker 1>as things like Tuskegee and tholidamide revealed the enormous failings

1:23:28.680 --> 1:23:33.800
<v Speaker 1>of informed consent and protections for vulnerable individuals. Many of

1:23:33.840 --> 1:23:38.120
<v Speaker 1>these developments in drug safety studies were overwhelmingly positive in

1:23:38.200 --> 1:23:41.880
<v Speaker 1>terms of preventing people from being coerced into unsafe studies

1:23:41.920 --> 1:23:46.599
<v Speaker 1>and being harmed, But one unintended consequence was when protection

1:23:47.240 --> 1:23:52.320
<v Speaker 1>turned paternalistic, essentially preventing women from being included in drug

1:23:52.360 --> 1:23:56.280
<v Speaker 1>trials simply because they were women, or, more specifically, in

1:23:56.320 --> 1:24:00.479
<v Speaker 1>the nineteen seventy seven FDA policy excluding women of quote

1:24:00.680 --> 1:24:07.240
<v Speaker 1>child bearing potential from early phase drug studies. This meant

1:24:07.680 --> 1:24:12.439
<v Speaker 1>anyone who potentially could get pregnant.

1:24:12.439 --> 1:24:19.599
<v Speaker 2>Right, anyone with a uterus that was presumed to be working, right, Yeah, yeah,

1:24:19.680 --> 1:24:20.680
<v Speaker 2>any does any of.

1:24:20.640 --> 1:24:26.400
<v Speaker 1>Them, any of them, doesn't matter, doesn't matter. This is

1:24:26.439 --> 1:24:30.280
<v Speaker 1>a complicated subject, of course, because ensuring that no coercion

1:24:30.320 --> 1:24:33.599
<v Speaker 1>occurs with informed consent is still tricky, and there are

1:24:33.680 --> 1:24:38.479
<v Speaker 1>potential risks associated with participating in clinical trials. But also

1:24:38.720 --> 1:24:42.520
<v Speaker 1>without the inclusion of women of quote child bearing potential

1:24:43.040 --> 1:24:46.160
<v Speaker 1>in these studies, how would we know if that drug

1:24:46.320 --> 1:24:51.520
<v Speaker 1>is safe or effective for them. This is especially problematic

1:24:51.560 --> 1:24:54.920
<v Speaker 1>and tricky in terms of pregnant people, where it's kind

1:24:54.960 --> 1:24:58.120
<v Speaker 1>of like a rock and a hard placed situation, basically

1:24:58.200 --> 1:25:01.639
<v Speaker 1>forcing a choice between including pregnant people in clinical trials

1:25:01.760 --> 1:25:04.000
<v Speaker 1>which could put the fetus and the person at risk,

1:25:04.640 --> 1:25:07.120
<v Speaker 1>or in effect testing it out on them later in

1:25:07.160 --> 1:25:10.479
<v Speaker 1>an uncontrolled fashion, hoping that the studies showing it safe

1:25:10.560 --> 1:25:13.360
<v Speaker 1>in people who are not pregnant will mean that it's

1:25:13.400 --> 1:25:19.760
<v Speaker 1>safe for pregnant people. It's complicated, and I'm not going

1:25:19.800 --> 1:25:21.840
<v Speaker 1>to go into it here because I just don't have

1:25:21.920 --> 1:25:25.000
<v Speaker 1>the background knowledge to do so. But one thing that

1:25:25.040 --> 1:25:29.000
<v Speaker 1>does seem to be clear is that there is underrepresentation

1:25:29.560 --> 1:25:32.960
<v Speaker 1>of women and pregnant people in clinical trials.

1:25:33.600 --> 1:25:37.320
<v Speaker 2>That's why all drugs during pregnancy just have these like

1:25:37.520 --> 1:25:40.680
<v Speaker 2>wacky like, well, we don't know if it's safe, but

1:25:41.040 --> 1:25:43.599
<v Speaker 2>we don't know if it's harmful, so it's probably fine.

1:25:43.640 --> 1:25:46.920
<v Speaker 2>Like the scales that you use to define whether or

1:25:46.960 --> 1:25:49.280
<v Speaker 2>not something is safe in pregnancy or not the same

1:25:49.360 --> 1:25:51.559
<v Speaker 2>as when you're not pregnant.

1:25:51.800 --> 1:25:55.040
<v Speaker 1>Uh huh. It's it's far from a perfect system and

1:25:55.080 --> 1:25:56.080
<v Speaker 1>it means a lot of work.

1:25:56.479 --> 1:25:58.120
<v Speaker 2>Yeah, but the lack of.

1:25:58.120 --> 1:26:02.160
<v Speaker 1>Inclusion of women in medical studies can't all be chalked

1:26:02.240 --> 1:26:07.120
<v Speaker 1>up to this protective policy. Women were also explicitly excluded

1:26:07.439 --> 1:26:12.840
<v Speaker 1>simply because they were women. Explanations ranged from, well, men

1:26:12.880 --> 1:26:15.360
<v Speaker 1>and women are so similar that results from an all

1:26:15.439 --> 1:26:19.799
<v Speaker 1>men's study can be extrapolated to women. To women's menstrual

1:26:19.800 --> 1:26:26.280
<v Speaker 1>cycles and hormonal shifts could confuse the study results. You

1:26:26.360 --> 1:26:31.000
<v Speaker 1>can't have it both ways exactly. A. If results from

1:26:31.120 --> 1:26:35.360
<v Speaker 1>men only studies could be extrapolated to women, then why

1:26:35.400 --> 1:26:40.679
<v Speaker 1>weren't there any all women studies that were extrapolated to men. B.

1:26:41.360 --> 1:26:44.479
<v Speaker 1>If there were no meaningful differences between men and women,

1:26:44.800 --> 1:26:48.960
<v Speaker 1>why not include them both in the clinical trial. See

1:26:49.040 --> 1:26:53.120
<v Speaker 1>if menstruation could significantly affect the results of a drug trial,

1:26:53.880 --> 1:26:57.600
<v Speaker 1>why on earth is it not a reason then to

1:26:57.760 --> 1:27:02.559
<v Speaker 1>include women rather than to execs gluede them. And the

1:27:02.640 --> 1:27:06.200
<v Speaker 1>answer to all of these here's another quote, And I

1:27:06.320 --> 1:27:08.800
<v Speaker 1>just I should say that unless I say differently. These

1:27:08.880 --> 1:27:13.519
<v Speaker 1>quotes are from doing harm by Maya Dusonberry quote. In short,

1:27:13.880 --> 1:27:17.400
<v Speaker 1>studying only one sex was cheaper and easier, and men

1:27:17.479 --> 1:27:20.120
<v Speaker 1>were the chosen ones because women's bodies were thought to

1:27:20.160 --> 1:27:21.680
<v Speaker 1>be too complicated.

1:27:22.080 --> 1:27:22.320
<v Speaker 2>Yeah.

1:27:23.040 --> 1:27:28.920
<v Speaker 1>Yeah, And there's also the matter that the medical community,

1:27:29.439 --> 1:27:32.760
<v Speaker 1>which since its infancy had been comprised primarily of men,

1:27:33.240 --> 1:27:37.320
<v Speaker 1>either consciously or subconsciously, felt that to know the health

1:27:37.360 --> 1:27:41.760
<v Speaker 1>effects on men was enough, right, Like, well, we know

1:27:41.840 --> 1:27:43.760
<v Speaker 1>it on men, so that's that's good, right, Like.

1:27:43.960 --> 1:27:45.080
<v Speaker 2>Yep, that's all we need.

1:27:45.120 --> 1:27:48.200
<v Speaker 1>And maybe it wasn't this malicious thing. Maybe it just

1:27:48.360 --> 1:27:51.519
<v Speaker 1>wasn't even thought about women. Didn't women didn't even enter

1:27:51.640 --> 1:27:55.759
<v Speaker 1>into the consideration, which feels malicious, even though I'm saying

1:27:55.800 --> 1:27:59.439
<v Speaker 1>it as it wasn't malicious. I don't know. But it

1:27:59.479 --> 1:28:03.360
<v Speaker 1>wasn't until the late nineteen eighties that enough women were

1:28:03.400 --> 1:28:07.160
<v Speaker 1>involved in the medical community to bring these enormous gender

1:28:07.160 --> 1:28:10.760
<v Speaker 1>disparities in medical research to light. At this time, a

1:28:10.760 --> 1:28:13.719
<v Speaker 1>group of scientists who were women formed what is now

1:28:13.760 --> 1:28:17.360
<v Speaker 1>known as the Society for the Advancement of Women's Health Research,

1:28:17.960 --> 1:28:21.160
<v Speaker 1>and they demanded an audit by the Government Accounting Office

1:28:21.200 --> 1:28:25.280
<v Speaker 1>the GOAO of the NIH's research efforts to see how

1:28:25.400 --> 1:28:28.400
<v Speaker 1>well they had stuck to the nineteen eighty five Policy

1:28:28.800 --> 1:28:34.559
<v Speaker 1>for the Inclusion of Women in Research. This GOAO report,

1:28:34.760 --> 1:28:40.479
<v Speaker 1>which was published in nineteen ninety, was staggering. They had

1:28:40.520 --> 1:28:43.800
<v Speaker 1>done next to nothing. In most of the studies that

1:28:43.840 --> 1:28:47.520
<v Speaker 1>the NIH funded. They couldn't say whether women were included,

1:28:47.880 --> 1:28:52.120
<v Speaker 1>or if they were how many. So far, I've talked

1:28:52.120 --> 1:28:56.600
<v Speaker 1>about this more generally, right, more and more descriptive, abstract

1:28:57.000 --> 1:29:01.000
<v Speaker 1>women are excluded from studies. Let's get into some more

1:29:01.080 --> 1:29:06.240
<v Speaker 1>solid examples that illustrate the knowledge gap. For example, there's

1:29:06.280 --> 1:29:09.519
<v Speaker 1>a famous study called the Baltimore Longitudinal Study of Aging

1:29:09.640 --> 1:29:12.640
<v Speaker 1>that was started in nineteen fifty eight and aimed to

1:29:12.760 --> 1:29:17.280
<v Speaker 1>study quote, normal human aging. This was the one that

1:29:17.360 --> 1:29:19.959
<v Speaker 1>found that a baby aspirin a day could be protective

1:29:19.960 --> 1:29:22.840
<v Speaker 1>against heart disease. You know that, Like now, that's conventional

1:29:22.880 --> 1:29:28.479
<v Speaker 1>wisdom or whatever. Yeah, that study didn't include women, included

1:29:28.560 --> 1:29:31.920
<v Speaker 1>thousands of men. It didn't include women for twenty years.

1:29:33.280 --> 1:29:36.880
<v Speaker 1>Another large scale study started in nineteen eighty two, whose

1:29:36.920 --> 1:29:39.960
<v Speaker 1>aim was to study the effects of dietary change and

1:29:40.120 --> 1:29:46.519
<v Speaker 1>exercise on heart disease, included thirteen thousand men and zero women,

1:29:47.600 --> 1:29:51.200
<v Speaker 1>despite the fact that heart disease is and was then

1:29:51.479 --> 1:29:56.200
<v Speaker 1>one of the leading causes of death in women. And

1:29:56.240 --> 1:30:00.439
<v Speaker 1>then there's this, I think it takes the cake quota

1:30:00.520 --> 1:30:05.000
<v Speaker 1>directly again from doing harm by Maya Dusonberry. There's a

1:30:05.080 --> 1:30:09.080
<v Speaker 1>quote and then a quote within a quote. So the

1:30:09.400 --> 1:30:14.960
<v Speaker 1>inception of quotes quote, and NIH supported pilot study from

1:30:15.000 --> 1:30:19.040
<v Speaker 1>Rockefeller University that looked at how obesity affected breast and

1:30:19.160 --> 1:30:23.280
<v Speaker 1>uterine cancer didn't enroll a single woman.

1:30:24.520 --> 1:30:28.559
<v Speaker 2>I'm sorry, breast and uterine cancer.

1:30:29.439 --> 1:30:32.160
<v Speaker 1>It is true that people assigned male at birth do

1:30:32.360 --> 1:30:34.120
<v Speaker 1>develop breast cancer.

1:30:34.320 --> 1:30:37.360
<v Speaker 2>Uh huh, and uterine cancer, Aaron, I.

1:30:37.320 --> 1:30:37.960
<v Speaker 1>Don't think so.

1:30:38.560 --> 1:30:40.760
<v Speaker 2>Yeah, No, you need a uterus for that.

1:30:41.840 --> 1:30:47.320
<v Speaker 1>Yeah, continuing the quote, as Representative Snow noted dryly at

1:30:47.360 --> 1:30:52.439
<v Speaker 1>the congressional hearings. Quote, somehow, I find it hard to

1:30:52.520 --> 1:30:56.360
<v Speaker 1>believe that the male dominated medical community would tolerate a

1:30:56.400 --> 1:31:00.439
<v Speaker 1>study of prostate cancer that used only women as research

1:31:00.479 --> 1:31:10.120
<v Speaker 1>subjects and quotes. I can't That one just echoed in

1:31:10.160 --> 1:31:18.760
<v Speaker 1>my head for days. Eh. Nearly anywhere they looked there

1:31:18.840 --> 1:31:22.639
<v Speaker 1>was a striking lack of inclusion of women and enormous

1:31:22.640 --> 1:31:27.320
<v Speaker 1>consequences because of that. Biological differences between people assigned male

1:31:27.360 --> 1:31:30.240
<v Speaker 1>at birth and people assigned female at birth have historically

1:31:30.280 --> 1:31:34.479
<v Speaker 1>been used to claim inferiority or superiority while failing to

1:31:34.520 --> 1:31:38.760
<v Speaker 1>examine the potential health impact of that difference, such as

1:31:38.840 --> 1:31:42.200
<v Speaker 1>in the way drugs are metabolized, which is impacted by

1:31:42.320 --> 1:31:47.320
<v Speaker 1>fat distribution and hormones, among other factors. So when women

1:31:47.360 --> 1:31:50.400
<v Speaker 1>aren't included in drug trials, should we be surprised by

1:31:50.439 --> 1:31:53.639
<v Speaker 1>the finding that women are quote fifty to seventy five

1:31:53.720 --> 1:31:57.640
<v Speaker 1>percent more likely than men to have an adverse drug reaction? Like,

1:31:57.800 --> 1:32:01.960
<v Speaker 1>that's not a surprising finding, it's horrible.

1:32:02.720 --> 1:32:06.679
<v Speaker 2>Well, and I also just wonder how many of those

1:32:07.200 --> 1:32:11.680
<v Speaker 2>adverse drug reactions are often just passed off as being oh, well,

1:32:11.760 --> 1:32:14.120
<v Speaker 2>like not real, you know, uh huh, discounted.

1:32:14.200 --> 1:32:18.240
<v Speaker 1>I'm sure many are. Yeah, the dosing of too many

1:32:18.320 --> 1:32:21.479
<v Speaker 1>drugs has been determined by how it affects men's bodies

1:32:21.680 --> 1:32:26.840
<v Speaker 1>and also overall like people within a certain BMI range.

1:32:27.200 --> 1:32:30.840
<v Speaker 1>Or take chronic pain for example, which women are known

1:32:30.880 --> 1:32:35.360
<v Speaker 1>to be disproportionately affected by, and studies indicate that women

1:32:35.479 --> 1:32:40.559
<v Speaker 1>experience pain differently than men. And again, these studies didn't

1:32:40.560 --> 1:32:43.080
<v Speaker 1>make the distinction between whether they were talking about sex

1:32:43.200 --> 1:32:48.800
<v Speaker 1>or gender or whatever. Despite these pain differences, there was

1:32:48.840 --> 1:32:51.880
<v Speaker 1>a study from two thousand and five that found that

1:32:52.000 --> 1:32:57.519
<v Speaker 1>almost eighty percent of animal pain studies used male animals only.

1:32:58.920 --> 1:33:02.640
<v Speaker 1>And while the lack of sex analysis in animal studies

1:33:02.720 --> 1:33:06.360
<v Speaker 1>of all kinds is hugely problematic, it really only captures

1:33:06.400 --> 1:33:09.479
<v Speaker 1>one aspect of the knowledge gap. These studies don't take

1:33:09.520 --> 1:33:12.840
<v Speaker 1>into account the gender bias and social factors that influence

1:33:12.920 --> 1:33:17.599
<v Speaker 1>health and are hugely important to examine. The nineteen ninety

1:33:17.640 --> 1:33:20.840
<v Speaker 1>GAO report did change some things for the better, but

1:33:20.880 --> 1:33:24.360
<v Speaker 1>we're still not even close to equitable, and many studies

1:33:24.360 --> 1:33:28.160
<v Speaker 1>simply fail to report any sex or gender analysis of results.

1:33:28.479 --> 1:33:31.360
<v Speaker 1>There have been suggestions to require the inclusion of such

1:33:31.400 --> 1:33:35.280
<v Speaker 1>analysis for publication in peer reviewed journals, but that has

1:33:35.320 --> 1:33:39.920
<v Speaker 1>been met with some resistance for vague scientific reasons, whatever

1:33:39.960 --> 1:33:43.759
<v Speaker 1>that means. But still, even though things are getting better,

1:33:43.880 --> 1:33:46.880
<v Speaker 1>there is a huge lag time in between when those

1:33:46.880 --> 1:33:50.800
<v Speaker 1>studies are conducted, to when the results are analyzed and published,

1:33:51.400 --> 1:33:55.360
<v Speaker 1>to when it becomes presented to the interested field, to

1:33:55.479 --> 1:33:58.599
<v Speaker 1>then the wider community, to then when it becomes included

1:33:58.640 --> 1:34:01.320
<v Speaker 1>in textbooks, then when it trickles out to the rest

1:34:01.479 --> 1:34:08.519
<v Speaker 1>of the public. Let's illustrate. Picture someone having a heart attack. Okay,

1:34:08.840 --> 1:34:11.600
<v Speaker 1>what do they look like, what are they doing? What

1:34:11.680 --> 1:34:14.839
<v Speaker 1>are the signs and symptoms they seem to be feeling.

1:34:15.280 --> 1:34:16.759
<v Speaker 2>This is a really good example.

1:34:16.880 --> 1:34:21.160
<v Speaker 1>Arin I love this example. Is it an older man,

1:34:22.000 --> 1:34:26.120
<v Speaker 1>probably an older white man, clutching at his left arm

1:34:26.200 --> 1:34:27.040
<v Speaker 1>and his chest.

1:34:27.439 --> 1:34:30.360
<v Speaker 2>Salt and pepper hair, salt and pepper hair.

1:34:31.000 --> 1:34:34.080
<v Speaker 1>Maybe he's got like a short sleeve button up shirt on.

1:34:34.640 --> 1:34:35.760
<v Speaker 2>Definitely, uh huh.

1:34:35.760 --> 1:34:37.000
<v Speaker 1>It was like sweating a lot.

1:34:37.360 --> 1:34:43.639
<v Speaker 2>Sweaty, super sweaty. He describes a pressure in the center

1:34:43.720 --> 1:34:46.400
<v Speaker 2>of his chest which radiates to his left arm and

1:34:46.479 --> 1:34:50.280
<v Speaker 2>maybe up into his jaw. He clutches at his chest

1:34:50.479 --> 1:34:52.639
<v Speaker 2>and then gasping for breath.

1:34:53.040 --> 1:34:57.960
<v Speaker 1>Yeah, how many of you pictured a woman with maybe

1:34:58.000 --> 1:35:00.919
<v Speaker 1>some uncomfortable back pain or flu like symptoms?

1:35:03.880 --> 1:35:05.520
<v Speaker 2>Did anyone anybody?

1:35:05.840 --> 1:35:07.800
<v Speaker 1>Maybe? I thought there are some out there for sure,

1:35:08.840 --> 1:35:11.640
<v Speaker 1>because much of the early research on heart attacks was

1:35:11.680 --> 1:35:15.640
<v Speaker 1>focused on men. That's the search image we have, and

1:35:15.680 --> 1:35:18.519
<v Speaker 1>it can be deadly. Like when a study from two

1:35:18.520 --> 1:35:22.680
<v Speaker 1>thousand found that quote young women and I think by

1:35:22.760 --> 1:35:26.599
<v Speaker 1>this was meant like under the age of fifty are

1:35:26.760 --> 1:35:30.040
<v Speaker 1>seven times more likely to be sent home from the

1:35:30.120 --> 1:35:33.719
<v Speaker 1>hospital in the middle of having a heart attack. Seven

1:35:33.760 --> 1:35:37.280
<v Speaker 1>times those have fatal consequences.

1:35:38.040 --> 1:35:41.400
<v Speaker 2>There, Oh god, Aaron, there's so many good examples of this.

1:35:42.760 --> 1:35:48.920
<v Speaker 2>Do you know about the testicular torsion. One testicular torsion

1:35:49.640 --> 1:35:53.760
<v Speaker 2>It's when your testicle twists on itself and it can

1:35:53.760 --> 1:35:57.360
<v Speaker 2>cut off the blood flow. It's an absolute emergency. Causes

1:35:57.400 --> 1:36:02.559
<v Speaker 2>excruciating pain, okay in the testicles. And they say time

1:36:02.600 --> 1:36:06.280
<v Speaker 2>is tissue. You have six hours to like diagnose and

1:36:06.280 --> 1:36:09.280
<v Speaker 2>treat testicular torsion, and people are really good at it.

1:36:09.320 --> 1:36:11.519
<v Speaker 2>There's a lot of studies in hospitals, like the time

1:36:11.600 --> 1:36:15.160
<v Speaker 2>from into the emergency room to treatment and like into

1:36:15.200 --> 1:36:18.639
<v Speaker 2>the or it's super short. Ovarian torsion.

1:36:18.920 --> 1:36:20.360
<v Speaker 1>I knew you were gonna say that.

1:36:22.000 --> 1:36:26.320
<v Speaker 2>Same exact thing. Okay, You're ovary twists around itself. The

1:36:26.600 --> 1:36:30.400
<v Speaker 2>time from diagnosis to OAR is like I think at

1:36:30.479 --> 1:36:34.559
<v Speaker 2>least twice as long, if not missed entirely, like it

1:36:34.680 --> 1:36:36.040
<v Speaker 2>is staggering.

1:36:36.439 --> 1:36:40.759
<v Speaker 1>Oh yeah, yeah, there are, I mean, honestly, just grab

1:36:40.800 --> 1:36:46.600
<v Speaker 1>bags full of examples about the diagnostic delay for anything,

1:36:47.080 --> 1:36:51.960
<v Speaker 1>the treatment delay, what kind of treatment that's received. I mean,

1:36:52.280 --> 1:36:56.559
<v Speaker 1>in general, men are seen as sick while women are

1:36:56.600 --> 1:37:01.200
<v Speaker 1>seen as stressed. And this, all of these examples that

1:37:01.240 --> 1:37:04.280
<v Speaker 1>you and I just sort of went through, these are

1:37:04.360 --> 1:37:07.240
<v Speaker 1>tied to both the knowledge gap and the trust gap.

1:37:07.840 --> 1:37:11.360
<v Speaker 1>Medical doctors only know what heart attacks look like in men,

1:37:11.640 --> 1:37:14.679
<v Speaker 1>and they are disinclined to believe that women's symptoms are real.

1:37:15.680 --> 1:37:20.439
<v Speaker 1>So now let's get into the trust gap. If you

1:37:20.520 --> 1:37:23.360
<v Speaker 1>thought the knowledge gap had deep roots, wait until you

1:37:23.439 --> 1:37:28.439
<v Speaker 1>hear about the trust gap. In order to explain these roots,

1:37:28.520 --> 1:37:31.040
<v Speaker 1>I'm going to take us through a brief history of hysteria,

1:37:31.560 --> 1:37:34.519
<v Speaker 1>which was first described in ancient Egypt and got its

1:37:34.560 --> 1:37:37.040
<v Speaker 1>name from ancient Greece. Like I said, from the Greek

1:37:37.040 --> 1:37:42.240
<v Speaker 1>word for uterus histra. What is hysteria. It's basically the

1:37:42.280 --> 1:37:45.200
<v Speaker 1>idea that a woman's health and mental status is tied

1:37:45.240 --> 1:37:48.720
<v Speaker 1>directly to her uterus, and that all disease in a

1:37:48.760 --> 1:37:53.320
<v Speaker 1>woman came from the uterus wandering around the body like

1:37:53.479 --> 1:38:01.120
<v Speaker 1>literally wandering, but just like these restless uteri. The definition

1:38:01.160 --> 1:38:06.920
<v Speaker 1>of hysteria has also wandered substantially throughout history. In ancient Greece,

1:38:07.080 --> 1:38:10.760
<v Speaker 1>in hippocratic texts from around the fifth century BCE, it

1:38:10.880 --> 1:38:15.120
<v Speaker 1>seemed to be thought of as an organic biological process,

1:38:15.400 --> 1:38:17.840
<v Speaker 1>one which was likely to happen if marriage was put

1:38:17.840 --> 1:38:20.120
<v Speaker 1>off for too long or if a woman didn't get

1:38:20.120 --> 1:38:24.200
<v Speaker 1>pregnant early enough after puberty. In Europe and the centuries after,

1:38:24.479 --> 1:38:27.840
<v Speaker 1>throughout the medieval period, the meaning changed and became more

1:38:28.200 --> 1:38:31.240
<v Speaker 1>spiritually based, and it was thought that the uterus could

1:38:31.240 --> 1:38:35.439
<v Speaker 1>be inhabited by a demon or evil spirits, or possessed

1:38:35.560 --> 1:38:39.639
<v Speaker 1>via witchcraft, and the uterus became the scapegoat for any

1:38:39.640 --> 1:38:42.960
<v Speaker 1>disease or complaint that a woman had. In hysteria, the

1:38:43.040 --> 1:38:44.960
<v Speaker 1>catch all diagnosis.

1:38:45.720 --> 1:38:46.760
<v Speaker 2>The poor uterus.

1:38:46.800 --> 1:38:52.240
<v Speaker 1>It's so maligned erin it is it is, yeah, it

1:38:52.240 --> 1:38:57.000
<v Speaker 1>hasn't gotten that much better, but it's find somewhat yeah.

1:38:57.200 --> 1:39:00.960
<v Speaker 1>And this quality of hysteria as a disease of exclusion

1:39:01.720 --> 1:39:05.200
<v Speaker 1>it was useful to physicians, especially as the field of

1:39:05.280 --> 1:39:10.080
<v Speaker 1>medicine itself evolved. I've talked before on this podcast about

1:39:10.080 --> 1:39:13.600
<v Speaker 1>how medicine changed substantially when measuring tools began to be

1:39:13.640 --> 1:39:18.120
<v Speaker 1>introduced and measurements began to be compiled for certain diseases

1:39:18.920 --> 1:39:21.920
<v Speaker 1>like blood pressure. You know, what's a normal range, what's not?

1:39:22.040 --> 1:39:25.800
<v Speaker 1>Heart rate, red blood cell count, body temperature, etc. All

1:39:25.840 --> 1:39:29.320
<v Speaker 1>these things. I think in our sickle cell episode, I

1:39:29.400 --> 1:39:33.400
<v Speaker 1>talked about how these tools, in addition to medical specialization,

1:39:34.000 --> 1:39:37.479
<v Speaker 1>led to medicine shifting to be less about the person

1:39:38.240 --> 1:39:42.280
<v Speaker 1>and more about the body or a part.

1:39:42.080 --> 1:39:44.040
<v Speaker 2>Of the body.

1:39:44.120 --> 1:39:48.680
<v Speaker 1>It also led to this important distinction between signs and symptoms.

1:39:49.200 --> 1:39:52.120
<v Speaker 1>Signs being something that someone who is not the patient

1:39:52.200 --> 1:39:56.040
<v Speaker 1>can measure or see or feel. Symptoms are the things

1:39:56.040 --> 1:40:00.880
<v Speaker 1>that only the patient can feel and describe are objective.

1:40:01.040 --> 1:40:06.639
<v Speaker 1>Symptoms subjective. As the ability to detect disease signs became

1:40:06.680 --> 1:40:12.320
<v Speaker 1>more refined, diagnosis increasingly relied on signs rather than symptoms,

1:40:12.840 --> 1:40:16.080
<v Speaker 1>and a physician could listen less or not at all

1:40:16.160 --> 1:40:19.719
<v Speaker 1>to their patient and still end up successfully treating them,

1:40:20.240 --> 1:40:24.800
<v Speaker 1>offering a not so great precedent. But it also meant

1:40:24.880 --> 1:40:27.479
<v Speaker 1>that if there were no signs or the signs didn't

1:40:27.479 --> 1:40:31.760
<v Speaker 1>tell them anything, they could and often did, disregard the

1:40:31.800 --> 1:40:37.200
<v Speaker 1>symptoms as hysterical In of the eighteen hundreds, Jean Martin

1:40:37.360 --> 1:40:42.599
<v Speaker 1>Charcot tried to reclassify hysteria as a neurological disorder rather

1:40:42.640 --> 1:40:48.000
<v Speaker 1>than a personality flaw, believing that believing that the ovaries

1:40:48.280 --> 1:40:57.439
<v Speaker 1>rather than the uterus, diverted energy from the brain during menstruation, pregnancy, lactation, menopause, ovulation, etc.

1:40:58.240 --> 1:41:01.120
<v Speaker 1>And that the brain drained of all this energy could

1:41:01.120 --> 1:41:03.720
<v Speaker 1>barely function and left women weak.

1:41:05.040 --> 1:41:07.040
<v Speaker 2>Poor things just all the time.

1:41:08.720 --> 1:41:12.640
<v Speaker 1>Plaques and lesions that Charco found around the ovaries and

1:41:12.760 --> 1:41:17.679
<v Speaker 1>uterus during autopsies confirmed his hypothesis to him and led

1:41:17.720 --> 1:41:22.240
<v Speaker 1>to an increase in gynecological surgeries such as the removal

1:41:22.360 --> 1:41:27.960
<v Speaker 1>of the ovaries, the uterus or the clitorists surgeries which

1:41:27.960 --> 1:41:32.840
<v Speaker 1>were permanently damaging, if not fatal, which around fifty to

1:41:32.920 --> 1:41:38.200
<v Speaker 1>seventy percent were in like the mid eighteen hundreds. I'm

1:41:38.240 --> 1:41:43.959
<v Speaker 1>not going to get into Charco's ovary presser, but suffice

1:41:43.960 --> 1:41:47.599
<v Speaker 1>it to say that he carried out extensive medicalized torture

1:41:47.680 --> 1:41:51.040
<v Speaker 1>on women and asylums to try to confirm his ideas

1:41:51.120 --> 1:41:59.000
<v Speaker 1>about hysteria. Yea yea. From a wandering uterus to demonic

1:41:59.040 --> 1:42:05.599
<v Speaker 1>possession to a neurological disease. Hysteria had one more major

1:42:05.680 --> 1:42:09.680
<v Speaker 1>transformation to undergo, and it was this final one that

1:42:09.840 --> 1:42:13.720
<v Speaker 1>left such an enduring mark on how women are perceived

1:42:13.760 --> 1:42:23.160
<v Speaker 1>in medicine today. Enter Freud, one of the worst, one

1:42:23.200 --> 1:42:24.599
<v Speaker 1>of the worst. I'm going to try not to talk

1:42:24.600 --> 1:42:25.639
<v Speaker 1>about him too much.

1:42:26.439 --> 1:42:28.639
<v Speaker 2>Simply because, like any more airtime.

1:42:29.360 --> 1:42:31.840
<v Speaker 1>Well, I think he's important to talk about because of

1:42:31.880 --> 1:42:36.040
<v Speaker 1>the damage that he's done, but I also want to

1:42:36.080 --> 1:42:39.320
<v Speaker 1>get past him because there's just there's not enough time

1:42:39.360 --> 1:42:44.200
<v Speaker 1>in the world to do all of this. So Freud

1:42:44.280 --> 1:42:47.640
<v Speaker 1>initially jumped on the Charcot train of hysteria as a

1:42:47.680 --> 1:42:52.599
<v Speaker 1>neurological disorder, but then changed his mind, turning it into

1:42:52.640 --> 1:42:57.720
<v Speaker 1>a disease that was entirely psychological, often attributed to the

1:42:57.800 --> 1:43:02.599
<v Speaker 1>underdevelopment of libido or sexuality, or the rejection of feminine

1:43:02.680 --> 1:43:09.080
<v Speaker 1>values or feminine traits. Cured through talk therapy. What this

1:43:09.200 --> 1:43:15.160
<v Speaker 1>did was turn real things that women were experiencing pain, fatigue,

1:43:15.560 --> 1:43:20.360
<v Speaker 1>heavy or irregular periods, infertility, even into something that she

1:43:20.560 --> 1:43:23.639
<v Speaker 1>was doing with her mind. It's all in your head.

1:43:24.800 --> 1:43:29.120
<v Speaker 1>This probably sounds familiar to many people listening today who

1:43:29.120 --> 1:43:32.120
<v Speaker 1>have maybe been told something similar by a doctor they

1:43:32.160 --> 1:43:35.960
<v Speaker 1>thought they could trust to listen. Because despite how this

1:43:36.080 --> 1:43:42.200
<v Speaker 1>story is sometimes told, hysteria didn't disappear after Freud. It

1:43:42.240 --> 1:43:45.639
<v Speaker 1>may have fallen out of fashion and lost credibility as

1:43:45.640 --> 1:43:50.200
<v Speaker 1>a medical diagnosis a bit. But number one, it wasn't

1:43:50.280 --> 1:43:54.320
<v Speaker 1>actually removed from the DSM, the Diagnostic and Statistical Manual

1:43:54.320 --> 1:44:01.120
<v Speaker 1>of Mental Disorders until nineteen eighty and number two, it

1:44:01.240 --> 1:44:07.040
<v Speaker 1>never really went away, but was rather repackaged. Out of

1:44:07.080 --> 1:44:14.400
<v Speaker 1>this umbrella term hysteria came endometriosis MS, chronic pelvic pain,

1:44:14.800 --> 1:44:22.559
<v Speaker 1>many autoimmune diseases, samatitization, psychogenic illness, medically unexplained symptoms, so

1:44:22.880 --> 1:44:29.320
<v Speaker 1>many things. Freud's transformation of hysteria into a psychological disorder

1:44:29.479 --> 1:44:35.240
<v Speaker 1>turned women into unreliable sources on their own body. Essentially,

1:44:35.320 --> 1:44:37.840
<v Speaker 1>a woman is thought to be lying about her symptoms

1:44:38.000 --> 1:44:41.760
<v Speaker 1>unless there is observable proof to the contrary, or her

1:44:41.800 --> 1:44:46.120
<v Speaker 1>symptoms are real but psychogenic unless you can prove otherwise.

1:44:47.800 --> 1:44:51.879
<v Speaker 1>A gynecology textbook from nineteen seventy one said that quote

1:44:52.520 --> 1:44:57.519
<v Speaker 1>many women wittingly or unwittingly exaggerate the severity of their

1:44:57.560 --> 1:45:03.559
<v Speaker 1>complaints to gratify neurotic desires end quote, and in the

1:45:03.600 --> 1:45:09.680
<v Speaker 1>same textbook that morning sickness quote may indicate resentment, ambivalence,

1:45:09.880 --> 1:45:18.559
<v Speaker 1>and inadequacy in women ill prepared for motherhood. Oh as

1:45:18.560 --> 1:45:20.680
<v Speaker 1>if you needed more things to get angry about.

1:45:20.479 --> 1:45:28.200
<v Speaker 2>Right, and I can't rage in front of the microphone.

1:45:28.400 --> 1:45:33.479
<v Speaker 1>It's it all explains so much about today and how

1:45:33.520 --> 1:45:40.200
<v Speaker 1>women are treated. Women began being seen as mentally ill

1:45:40.520 --> 1:45:44.640
<v Speaker 1>rather than physically sick, and throughout the twentieth century the

1:45:44.760 --> 1:45:49.760
<v Speaker 1>rate of psychogenic illness diagnoses increased enormously. If you were

1:45:49.800 --> 1:45:54.120
<v Speaker 1>experiencing pain and complained too little, you weren't taken seriously

1:45:54.200 --> 1:45:58.000
<v Speaker 1>because you weren't experiencing enough pain. But if you complained

1:45:58.080 --> 1:46:01.960
<v Speaker 1>too much, you were labeled as an exaggerator, as dramatic,

1:46:02.000 --> 1:46:07.519
<v Speaker 1>as crazy. One proponent of psychogenic diagnoses says that quote

1:46:07.720 --> 1:46:11.400
<v Speaker 1>the vehemence with which many patients insist their illness is

1:46:11.520 --> 1:46:15.720
<v Speaker 1>medical rather than psychiatric, has become one of the hallmarks

1:46:15.880 --> 1:46:19.800
<v Speaker 1>of the conditions. So like, the more you say no,

1:46:20.120 --> 1:46:23.479
<v Speaker 1>this is a real pain, the more likely you are

1:46:23.520 --> 1:46:25.719
<v Speaker 1>to be diagnosed with the psychogenic illness.

1:46:26.360 --> 1:46:27.880
<v Speaker 2>Yeah, yeah, what.

1:46:29.880 --> 1:46:33.879
<v Speaker 1>There are scientific studies backing up these implicit gender biases

1:46:33.920 --> 1:46:37.800
<v Speaker 1>in medicine, and it's not just male doctors that are

1:46:37.840 --> 1:46:42.439
<v Speaker 1>mistreating women. Women, on average are more likely to report

1:46:42.520 --> 1:46:45.800
<v Speaker 1>pain and less likely to receive pain treatment. This is

1:46:45.840 --> 1:46:47.920
<v Speaker 1>not just a gendered issue, of course, but a racial

1:46:47.960 --> 1:46:51.559
<v Speaker 1>one as well, with people of color incredibly undertreated for pain.

1:46:53.000 --> 1:46:57.479
<v Speaker 1>One study showed that after undergoing a coronary artery bypass graft.

1:46:57.880 --> 1:46:59.719
<v Speaker 2>Oh my gosh, I hate this study.

1:47:00.080 --> 1:47:04.840
<v Speaker 1>Uh huh, men were more likely to receive painkillers, while

1:47:04.880 --> 1:47:10.439
<v Speaker 1>women were more likely to receive sedatives. A study from

1:47:10.439 --> 1:47:13.360
<v Speaker 1>two thousand and six by Kiera Monte at All found

1:47:13.479 --> 1:47:16.640
<v Speaker 1>that when med students and residents were presented with the

1:47:16.680 --> 1:47:21.360
<v Speaker 1>description of a patient experiencing symptoms, they initially diagnosed these

1:47:21.400 --> 1:47:25.760
<v Speaker 1>patients similarly, regardless if the patient was described as male

1:47:25.880 --> 1:47:30.719
<v Speaker 1>or female, but if a stressful life event was added

1:47:30.720 --> 1:47:35.599
<v Speaker 1>to the description quote, only fifteen percent of medical students

1:47:35.680 --> 1:47:39.479
<v Speaker 1>or residents diagnosed heart disease in the woman, compared to

1:47:39.680 --> 1:47:43.280
<v Speaker 1>fifty six percent for the man, and only thirty percent

1:47:43.400 --> 1:47:46.360
<v Speaker 1>referred the woman to a cardiologist compared to sixty two

1:47:46.439 --> 1:47:51.720
<v Speaker 1>percent for the man. That quotes from pain and prejudice,

1:47:51.880 --> 1:47:56.480
<v Speaker 1>the explanation given for the woman's symptoms turned from biological

1:47:56.640 --> 1:48:00.879
<v Speaker 1>to psychological, and there was no difference in the results

1:48:00.920 --> 1:48:05.600
<v Speaker 1>based on the gender of the doctors. It seems that

1:48:05.760 --> 1:48:09.040
<v Speaker 1>too often, when physicians meet with the patient, they see

1:48:09.040 --> 1:48:12.240
<v Speaker 1>the diagnosis in the identity of the patient, based on

1:48:12.320 --> 1:48:16.519
<v Speaker 1>implicit biases built into the medical training system. If you're

1:48:16.560 --> 1:48:19.680
<v Speaker 1>a woman, it's in your head or your uterus. If

1:48:19.680 --> 1:48:23.040
<v Speaker 1>you're a black person, you're drug seeking. If you're trans

1:48:23.080 --> 1:48:25.800
<v Speaker 1>and you're on hormone therapy, it's because of the hormones.

1:48:26.320 --> 1:48:28.240
<v Speaker 1>If you're fat, it's because you need to lose weight.

1:48:28.560 --> 1:48:31.719
<v Speaker 1>If you've ever been diagnosed with anxiety or depression, clearly

1:48:31.800 --> 1:48:35.160
<v Speaker 1>that's what's causing your pelvic pain or your chronic fatigue.

1:48:35.840 --> 1:48:40.080
<v Speaker 1>It's rarely that endometriosis could be a source of anxiety

1:48:40.120 --> 1:48:44.559
<v Speaker 1>or depression right Instead, it's depression causing your pelvic pain.

1:48:46.160 --> 1:48:51.360
<v Speaker 1>Take this anecdote paraphrased from doing harm. There was an

1:48:51.400 --> 1:48:55.200
<v Speaker 1>eleven year old girl who had severe abdominal pain and nausea.

1:48:55.400 --> 1:48:58.000
<v Speaker 1>She went to the er. The doctor told her it

1:48:58.080 --> 1:49:01.000
<v Speaker 1>was menstrual cramps, despite the fact that she had not

1:49:01.120 --> 1:49:05.320
<v Speaker 1>yet gotten her period. Ever, the pain didn't go away,

1:49:06.000 --> 1:49:08.840
<v Speaker 1>so the next day, in agony, she had to be

1:49:08.920 --> 1:49:11.880
<v Speaker 1>rushed back to the er. And at this point her mom,

1:49:11.920 --> 1:49:17.120
<v Speaker 1>who was a physician, demanded an ultrasound, and they found

1:49:17.200 --> 1:49:21.959
<v Speaker 1>the largest unruptured appendix that the surgeon had ever removed.

1:49:23.280 --> 1:49:26.080
<v Speaker 1>Would that have happened if it had been eleven year

1:49:26.080 --> 1:49:28.080
<v Speaker 1>old boy instead of an eleven year old girl?

1:49:28.920 --> 1:49:29.720
<v Speaker 2>No, probably not.

1:49:31.280 --> 1:49:33.840
<v Speaker 1>Did the doctor even ask have you ever had your

1:49:33.840 --> 1:49:37.240
<v Speaker 1>period before? Does this feel like period crabs?

1:49:37.439 --> 1:49:37.519
<v Speaker 3>Like?

1:49:38.439 --> 1:49:40.640
<v Speaker 1>Are period crabs so bad that you should go to

1:49:40.680 --> 1:49:41.080
<v Speaker 1>the er?

1:49:41.400 --> 1:49:44.759
<v Speaker 2>No? They shouldn't be, right, Like, if.

1:49:44.640 --> 1:49:46.479
<v Speaker 1>They are that bad and you're in the er, you're

1:49:46.520 --> 1:49:49.080
<v Speaker 1>there for a good reason. Yeah, you're not just they're

1:49:49.120 --> 1:49:51.800
<v Speaker 1>not just oh well, you know, deal with it, Take

1:49:51.840 --> 1:49:56.720
<v Speaker 1>some ibuprofen and go home. And that's with an observable,

1:49:56.800 --> 1:50:01.280
<v Speaker 1>detectable condition, right like you could look to find the

1:50:02.120 --> 1:50:06.400
<v Speaker 1>unruptured appendix. Women who seek medical care for a condition

1:50:06.520 --> 1:50:12.320
<v Speaker 1>that's not objectively observable or measurable or easily measurable. And

1:50:13.000 --> 1:50:16.360
<v Speaker 1>as you went into Aaron boy, we are inadequate at

1:50:16.680 --> 1:50:23.000
<v Speaker 1>describing and measuring pain. I mean absolutely inadequate. These these

1:50:23.080 --> 1:50:26.520
<v Speaker 1>mystery women are often a source of frustration for physicians,

1:50:27.040 --> 1:50:32.400
<v Speaker 1>and they're dismissively called malingerers. Never wells et cetera. Concern

1:50:32.840 --> 1:50:36.840
<v Speaker 1>turns to resentment as nothing seems to work and the

1:50:36.920 --> 1:50:40.640
<v Speaker 1>answer to the problem seems forever out of reach. I

1:50:40.680 --> 1:50:43.320
<v Speaker 1>can't see anything wrong with you, so there must not

1:50:43.439 --> 1:50:47.320
<v Speaker 1>be anything wrong with you. A physician's sense of self

1:50:47.360 --> 1:50:50.320
<v Speaker 1>worth shouldn't be tied up in having an answer or

1:50:50.360 --> 1:50:54.040
<v Speaker 1>the right answer. There's an incredible power in empathy in

1:50:54.080 --> 1:50:58.360
<v Speaker 1>saying I don't know, but let's find out. So where

1:50:58.360 --> 1:51:03.360
<v Speaker 1>does that all leave us with endometriosis. We have come

1:51:03.400 --> 1:51:07.439
<v Speaker 1>a long way since the early days of hysteria and endometriosis,

1:51:07.680 --> 1:51:10.000
<v Speaker 1>and the people who have made the biggest strides in

1:51:10.080 --> 1:51:15.599
<v Speaker 1>raising awareness of endometriosis are patient advocacy groups, people who

1:51:15.680 --> 1:51:18.519
<v Speaker 1>have had to become experts in a disease that their

1:51:18.560 --> 1:51:22.640
<v Speaker 1>own physicians often failed to communicate with them about. But

1:51:22.680 --> 1:51:27.120
<v Speaker 1>we haven't come nearly far enough. Stereotypes about endometriosis have

1:51:27.240 --> 1:51:32.280
<v Speaker 1>persisted long after being disproven, such as endometriosis is rare

1:51:32.439 --> 1:51:35.280
<v Speaker 1>in women of color, or only happens to women who

1:51:35.320 --> 1:51:39.760
<v Speaker 1>put off marriage and childbearing. These stereotypes, combined with the

1:51:39.800 --> 1:51:44.599
<v Speaker 1>outrageous lack of knowledge about how endometriosis actually works and

1:51:44.640 --> 1:51:48.519
<v Speaker 1>the tendency for physicians to dismiss or downplay the pain

1:51:48.640 --> 1:51:52.479
<v Speaker 1>experienced by women. These all contribute to the long, often

1:51:52.600 --> 1:51:57.519
<v Speaker 1>excruciating years people have to wait for a diagnosis, and

1:51:57.680 --> 1:52:02.400
<v Speaker 1>still endometriosis is too often made to be about a

1:52:02.439 --> 1:52:08.360
<v Speaker 1>woman's social or gender role. Endometriosis can absolutely impact a

1:52:08.400 --> 1:52:11.880
<v Speaker 1>person's fertility, and for someone who wants or thinks they

1:52:11.960 --> 1:52:16.240
<v Speaker 1>might want to have children, that's hugely important. But often

1:52:16.320 --> 1:52:20.599
<v Speaker 1>fertility is preserved as a default without asking the patient

1:52:20.720 --> 1:52:24.559
<v Speaker 1>whether or not subfertility or infertility would be acceptable if

1:52:24.600 --> 1:52:26.200
<v Speaker 1>it meant reducing the pain.

1:52:26.800 --> 1:52:27.000
<v Speaker 2>Yeah.

1:52:27.920 --> 1:52:30.840
<v Speaker 1>And a two thousand and three study found that women

1:52:30.880 --> 1:52:34.880
<v Speaker 1>who sought out doctors because of infertility received a diagnosis

1:52:34.880 --> 1:52:39.120
<v Speaker 1>of endometriosis in half the time that women complaining of

1:52:39.200 --> 1:52:40.200
<v Speaker 1>menstrual pain did.

1:52:40.880 --> 1:52:47.439
<v Speaker 2>It's not surprising and infuriating, exactly like infertility matters, but

1:52:47.560 --> 1:52:51.720
<v Speaker 2>it shouldn't have to cause infertility to matter. Yes, that's

1:52:52.760 --> 1:52:53.520
<v Speaker 2>so frustrating.

1:52:53.640 --> 1:52:58.080
<v Speaker 1>Yeah, yeah, And I think a large part of this

1:52:58.320 --> 1:53:01.320
<v Speaker 1>is due to the fact that men instral pain is

1:53:01.400 --> 1:53:07.160
<v Speaker 1>so normalized, it's so accepted, and it's reinforced intergenerationally. Yep, totally,

1:53:07.479 --> 1:53:11.559
<v Speaker 1>It's not viewed as interesting or worthy of research. Despite

1:53:11.600 --> 1:53:16.200
<v Speaker 1>being described for over one hundred years and affecting approximately

1:53:16.240 --> 1:53:20.360
<v Speaker 1>the same number of women as diabetes, end, demitriosis gets

1:53:20.360 --> 1:53:24.080
<v Speaker 1>about five percent of the research funds that diabetes gets.

1:53:24.600 --> 1:53:29.240
<v Speaker 2>I almost use diabetes as my expoint. What did you use,

1:53:29.560 --> 1:53:32.479
<v Speaker 2>I'm going with breast cancer. Oh okay, it's not too far.

1:53:32.600 --> 1:53:33.240
<v Speaker 2>I'm curious.

1:53:33.360 --> 1:53:40.439
<v Speaker 1>Yeah, but periods aren't fit for polite conversation. There's simply

1:53:40.479 --> 1:53:44.400
<v Speaker 1>the price of being a woman, right, No, not true.

1:53:44.720 --> 1:53:48.360
<v Speaker 1>Periods shouldn't be painful. People don't even need to have periods,

1:53:48.479 --> 1:53:51.720
<v Speaker 1>and if there is pain, it should be believed and understood.

1:53:52.360 --> 1:53:55.760
<v Speaker 1>Let's talk more about periods. Let's talk about consistency. Let's

1:53:55.760 --> 1:53:57.559
<v Speaker 1>talk about the number of times you have to empty

1:53:57.640 --> 1:53:59.800
<v Speaker 1>your diva cup or change your pad, or change your

1:53:59.840 --> 1:54:03.080
<v Speaker 1>tamp on brands do like the best? Are there any

1:54:03.160 --> 1:54:05.519
<v Speaker 1>things that you do that you help your period and

1:54:05.560 --> 1:54:09.320
<v Speaker 1>make you feel better? Like all these things so important?

1:54:10.280 --> 1:54:13.360
<v Speaker 2>Ah? Okay, ye say it erin.

1:54:14.560 --> 1:54:18.160
<v Speaker 1>I want to end, finally, after this very long history,

1:54:18.800 --> 1:54:23.960
<v Speaker 1>with a quote from of course again Maya Dusonberry from

1:54:24.000 --> 1:54:29.040
<v Speaker 1>her book Doing Harm. Quote. There is always a gap

1:54:29.160 --> 1:54:33.240
<v Speaker 1>between when a symptom begins and when it is medically explained.

1:54:34.240 --> 1:54:37.640
<v Speaker 1>It is unreasonable to expect that doctors who are fallible

1:54:37.720 --> 1:54:42.080
<v Speaker 1>human beings doing a difficult job can close this gap instantaneously,

1:54:42.960 --> 1:54:47.080
<v Speaker 1>and given that medical knowledge is and probably always will

1:54:47.120 --> 1:54:50.760
<v Speaker 1>be incomplete, they may at times not be able to

1:54:50.840 --> 1:54:54.320
<v Speaker 1>close it at all. But it shouldn't be unreasonable to

1:54:54.440 --> 1:54:58.320
<v Speaker 1>expect that during this period of uncertainty, the benefit of

1:54:58.360 --> 1:55:01.640
<v Speaker 1>the doubt be given to the patient. The default assumption

1:55:02.080 --> 1:55:05.200
<v Speaker 1>be that their symptoms are real, their description of what

1:55:05.240 --> 1:55:08.680
<v Speaker 1>they are feeling in their own bodies be believed, and

1:55:08.720 --> 1:55:13.120
<v Speaker 1>if it is medically unexplained, the burden be on medicine

1:55:13.240 --> 1:55:16.720
<v Speaker 1>to explain it. Such basic trust has been denied to

1:55:16.800 --> 1:55:23.680
<v Speaker 1>women for far too long. End quote. So erin, I

1:55:23.760 --> 1:55:28.920
<v Speaker 1>have a feeling I might just get angrier. But can

1:55:28.960 --> 1:55:32.280
<v Speaker 1>you tell me where we stand with endometrios's today?

1:55:34.480 --> 1:55:38.080
<v Speaker 2>I can try Aaron, Okay, maybe we should take a

1:55:38.080 --> 1:56:08.760
<v Speaker 2>break first, well, last break break. Almost every single paper

1:56:08.800 --> 1:56:11.000
<v Speaker 2>that I read, and I read a lot of papers

1:56:12.320 --> 1:56:18.240
<v Speaker 2>universally cited the statistic that ten percent of women of

1:56:18.400 --> 1:56:25.840
<v Speaker 2>child bearing age have endometriosis. And that's it. That's that's it.

1:56:25.920 --> 1:56:27.120
<v Speaker 2>That's the number that I have.

1:56:27.400 --> 1:56:35.880
<v Speaker 1>Ar Okay, it's and these numbers, like where are these

1:56:35.920 --> 1:56:38.840
<v Speaker 1>papers from? And so would those diagnoses have been based

1:56:38.880 --> 1:56:40.480
<v Speaker 1>on surgical.

1:56:42.640 --> 1:56:47.120
<v Speaker 2>Or yeah, I basically only looked at papers from twenty

1:56:47.280 --> 1:56:51.600
<v Speaker 2>ten and sooner, so like within the last ten years, okay,

1:56:51.720 --> 1:56:54.720
<v Speaker 2>and universally that is what they all said. I have

1:56:54.880 --> 1:56:59.720
<v Speaker 2>found no papers that tried to dig deeper and really

1:56:59.720 --> 1:57:02.640
<v Speaker 2>get it sense of like are these numbers changing, are

1:57:02.640 --> 1:57:09.440
<v Speaker 2>we seeing it more? Et cetera like? And was really

1:57:09.480 --> 1:57:15.680
<v Speaker 2>frustrating is that none of the papers dug down into

1:57:15.760 --> 1:57:19.360
<v Speaker 2>like what what does that actually mean? Because people who

1:57:19.440 --> 1:57:24.080
<v Speaker 2>are not child bearing age can have endometriosis. Lots of

1:57:24.120 --> 1:57:28.200
<v Speaker 2>people with the uterus that aren't women of child bearing

1:57:28.240 --> 1:57:33.440
<v Speaker 2>age can have endometriosis, And so does that ten percent

1:57:33.520 --> 1:57:36.680
<v Speaker 2>actually mean like ten percent of people with a uterus

1:57:37.160 --> 1:57:42.640
<v Speaker 2>have endometriosis? Or is that number higher because people with

1:57:42.800 --> 1:57:46.120
<v Speaker 2>the uterus maybe had entometriosis when they were younger and

1:57:46.160 --> 1:57:49.920
<v Speaker 2>now they're older, the symptoms have gone away, but those

1:57:49.920 --> 1:57:53.560
<v Speaker 2>people still count, right, So I don't have an answer

1:57:53.560 --> 1:57:54.040
<v Speaker 2>for you.

1:57:54.000 --> 1:57:56.880
<v Speaker 1>Right, Or what about people who have endometriolesians and might

1:57:56.920 --> 1:57:59.920
<v Speaker 1>not have symptoms that have led them to go seek

1:58:00.320 --> 1:58:01.280
<v Speaker 1>a diagnosis?

1:58:01.360 --> 1:58:01.520
<v Speaker 3>Right?

1:58:01.600 --> 1:58:04.080
<v Speaker 2>And that's what's so infuriating is that this ten percent

1:58:04.160 --> 1:58:08.960
<v Speaker 2>number assumes that it includes those people. Yeah, and so

1:58:09.120 --> 1:58:12.040
<v Speaker 2>it says that like thirty to fifty percent of those

1:58:12.160 --> 1:58:17.800
<v Speaker 2>ten percent will then have pain from this enometrosis, which, like, uh,

1:58:18.360 --> 1:58:24.400
<v Speaker 2>give me strength, I doubt no. But statistics also cite

1:58:24.960 --> 1:58:29.640
<v Speaker 2>that upwards of sixty percent of women, by which I

1:58:29.760 --> 1:58:33.040
<v Speaker 2>assume what they mean is sixty percent of people with

1:58:33.160 --> 1:58:39.200
<v Speaker 2>a uterus that suffer from chronic pelvic pain have endometriosis

1:58:39.240 --> 1:58:44.600
<v Speaker 2>as the likely cause of this pain. And those statistics,

1:58:44.640 --> 1:58:47.960
<v Speaker 2>both of them, no matter how flawed they are, are

1:58:48.040 --> 1:58:50.440
<v Speaker 2>incredibly high.

1:58:50.440 --> 1:58:52.320
<v Speaker 1>I mean, staggering.

1:58:51.920 --> 1:58:55.640
<v Speaker 2>Ten percent, even if we assume that ten percent of

1:58:55.680 --> 1:58:58.960
<v Speaker 2>people with the uterus is the real number, ten percent

1:58:59.000 --> 1:59:03.200
<v Speaker 2>of people with uterus. Okay, let's compare that, Aaron, you

1:59:03.320 --> 1:59:09.680
<v Speaker 2>mentioned diabetes. Almost used that. But let's talk about breast cancer,

1:59:10.120 --> 1:59:13.640
<v Speaker 2>shall we. Thirteen percent of women in the US will

1:59:13.680 --> 1:59:19.720
<v Speaker 2>develop breast cancer. Thirteen percent. That's really close to ten percent.

1:59:20.120 --> 1:59:24.840
<v Speaker 2>We have a whole month dedicated to breast cancer, don't we.

1:59:24.840 --> 1:59:26.840
<v Speaker 1>We have one for endometriosis too.

1:59:27.080 --> 1:59:28.480
<v Speaker 2>Oh really, but no one's heard of it.

1:59:28.920 --> 1:59:31.000
<v Speaker 1>Yeah that's fair.

1:59:32.120 --> 1:59:36.280
<v Speaker 2>But everybody knows about breast cancer. Everybody knows how important

1:59:36.280 --> 1:59:40.080
<v Speaker 2>breast cancer is. Everybody knows somebody who has survived breast cancer,

1:59:40.200 --> 1:59:44.880
<v Speaker 2>or everyone has lost someone from breast cancer, right, and

1:59:45.080 --> 1:59:50.760
<v Speaker 2>so many people have no idea what endometriosis is, let

1:59:50.800 --> 1:59:55.040
<v Speaker 2>alone care enough to, I don't know, like encourage funding

1:59:55.080 --> 1:59:59.360
<v Speaker 2>of research for it. Uh huh. And I think I

1:59:59.480 --> 2:00:04.040
<v Speaker 2>think this is now my soapbox. This is for a

2:00:04.040 --> 2:00:08.360
<v Speaker 2>lot of reasons that Aaron, you really kind of focused

2:00:08.400 --> 2:00:10.640
<v Speaker 2>on so many of them, and if we really drill

2:00:10.720 --> 2:00:13.400
<v Speaker 2>down to it, like it comes back to the patriarchy,

2:00:13.640 --> 2:00:17.840
<v Speaker 2>as it always does. But at its core it also

2:00:18.040 --> 2:00:23.520
<v Speaker 2>is because I think endometriosis is classified in all of

2:00:23.560 --> 2:00:29.880
<v Speaker 2>the literature as a quote benign condition. What so, endometriosis

2:00:30.000 --> 2:00:33.400
<v Speaker 2>is classified as a quote benign condition.

2:00:33.280 --> 2:00:35.160
<v Speaker 1>And so by this means it doesn't kill you.

2:00:35.560 --> 2:00:39.400
<v Speaker 2>So what this is in contrast to is a malignant

2:00:39.640 --> 2:00:44.240
<v Speaker 2>condition such as cancer, And what that means is, yes,

2:00:44.440 --> 2:00:48.200
<v Speaker 2>in general, a benign condition is not going to kill

2:00:48.240 --> 2:00:53.840
<v Speaker 2>you if left untreated, at least not directly. Cancers which

2:00:53.880 --> 2:00:59.280
<v Speaker 2>are malignant invade and metastasized, that is, they spread in

2:00:59.320 --> 2:01:03.360
<v Speaker 2>a way that, if left untreated, is often fatal. Now

2:01:03.640 --> 2:01:10.240
<v Speaker 2>I can see your face aerin endometriosis is really really

2:01:10.320 --> 2:01:15.120
<v Speaker 2>interesting because it in fact does metastasize. It can metastasize

2:01:15.160 --> 2:01:17.640
<v Speaker 2>in a way right. It can be found well outside

2:01:17.640 --> 2:01:21.839
<v Speaker 2>the peritoneal cavity, and by definition, it is tissue found

2:01:21.920 --> 2:01:25.120
<v Speaker 2>outside where it's supposed to be. And in the case

2:01:25.200 --> 2:01:30.320
<v Speaker 2>of deeply infiltrating endometriosis, it does invade deeper tissues in

2:01:30.360 --> 2:01:35.840
<v Speaker 2>the same way that cancer can. But endometriosis causes pain,

2:01:36.560 --> 2:01:41.720
<v Speaker 2>causes suffering, causes infertility, and that, my friends, is seen

2:01:41.760 --> 2:01:48.320
<v Speaker 2>as benign. It can invade your bowels and cause obstruction,

2:01:48.800 --> 2:01:52.440
<v Speaker 2>but it usually doesn't. That's uncommon. It can invade your

2:01:52.480 --> 2:01:55.600
<v Speaker 2>bladder or your urrots and cause obstruction. It can cause

2:01:55.640 --> 2:02:00.000
<v Speaker 2>destruction of your urrotors, but it doesn't often. And because

2:02:00.000 --> 2:02:05.640
<v Speaker 2>because it's a histologically recognizable tissue type, and because it

2:02:06.040 --> 2:02:09.720
<v Speaker 2>generally quote unquote doesn't invade to the extent that a

2:02:09.800 --> 2:02:15.960
<v Speaker 2>cancer would, and because it generally subsides after menopause, after

2:02:16.000 --> 2:02:23.480
<v Speaker 2>the withdrawal of those hormones, it is quote benign. Okay,

2:02:23.480 --> 2:02:25.040
<v Speaker 2>it's clearly nothing of the sort.

2:02:25.880 --> 2:02:33.640
<v Speaker 1>Obviously, So in non medical language, benign is like not harmful,

2:02:34.160 --> 2:02:37.280
<v Speaker 1>not bad. So is there a different interpretation in metal.

2:02:37.280 --> 2:02:38.640
<v Speaker 1>I'm just trying to give that a little bit of

2:02:38.680 --> 2:02:42.240
<v Speaker 1>the benefit of the doubt, because this is so staggeringly appalling.

2:02:42.400 --> 2:02:46.360
<v Speaker 2>It is it does mean in the medical sense, in

2:02:46.400 --> 2:02:48.360
<v Speaker 2>that it is not a malignant condition.

2:02:48.800 --> 2:02:51.960
<v Speaker 1>But I mean, does the use of the word benign

2:02:52.160 --> 2:02:57.200
<v Speaker 1>in medicine then influence people who are practicing medicine to

2:02:57.440 --> 2:03:01.920
<v Speaker 1>view a condition as benign as in the popular interpretation

2:03:02.000 --> 2:03:02.480
<v Speaker 1>of the term.

2:03:02.920 --> 2:03:06.680
<v Speaker 2>In my opinion, how can it not. Yeah, when we're

2:03:06.720 --> 2:03:10.760
<v Speaker 2>talking about pain, and we've talked so much about how

2:03:11.040 --> 2:03:18.040
<v Speaker 2>difficult pain is to understand, to explain to, and to

2:03:18.160 --> 2:03:23.200
<v Speaker 2>sympathize with, and to empathize with if your pain perception

2:03:23.400 --> 2:03:28.200
<v Speaker 2>is different than someone else's pain perception or pain sensitization, right.

2:03:28.880 --> 2:03:31.960
<v Speaker 2>I also do want to point out that the risk

2:03:32.120 --> 2:03:37.520
<v Speaker 2>of eventual ovarian cancer diagnosis, so cancer the malignant condition,

2:03:38.720 --> 2:03:42.360
<v Speaker 2>in people with long standing endometriosis, is two to threefold

2:03:42.520 --> 2:03:49.120
<v Speaker 2>higher than in people without endometriosis. So even though endometriosis

2:03:49.160 --> 2:03:54.920
<v Speaker 2>itself is not a cancerous condition, it's not without its risks. Yeah, right,

2:03:55.200 --> 2:03:59.760
<v Speaker 2>I mean, so far as that goes Ah, isn't that

2:04:00.520 --> 2:04:01.160
<v Speaker 2>just fascinating?

2:04:01.160 --> 2:04:01.400
<v Speaker 1>Though?

2:04:01.440 --> 2:04:06.760
<v Speaker 2>So I found that to be a very sort of

2:04:07.040 --> 2:04:11.880
<v Speaker 2>problematic what I think is likely a big contributor to

2:04:11.960 --> 2:04:16.800
<v Speaker 2>why endometriosis kind of has maybe the rap that it

2:04:16.880 --> 2:04:21.520
<v Speaker 2>has right, just this classification of it with and it's

2:04:21.880 --> 2:04:24.600
<v Speaker 2>medically I actually found one paper that was kind of like,

2:04:24.800 --> 2:04:28.320
<v Speaker 2>is it correct to call it a benign or is

2:04:28.360 --> 2:04:30.800
<v Speaker 2>it not in terms of the medical definition of the

2:04:30.880 --> 2:04:35.360
<v Speaker 2>term benign? Okay, because it does behave in ways that

2:04:36.240 --> 2:04:40.200
<v Speaker 2>benign tissue doesn't, and yet it doesn't behave the way

2:04:40.200 --> 2:04:43.720
<v Speaker 2>that a cancer does, and it doesn't fit the definition

2:04:43.760 --> 2:04:47.360
<v Speaker 2>of a cancer. There have been a number of new

2:04:47.440 --> 2:04:52.560
<v Speaker 2>mutations identified in endometrial tissue that are associated with cancer,

2:04:52.920 --> 2:04:57.240
<v Speaker 2>but never enough of them, like only one mutation instead

2:04:57.240 --> 2:05:00.080
<v Speaker 2>of three mutations that would then cause it to be

2:05:00.200 --> 2:05:05.440
<v Speaker 2>a cancer. So it is not a cancer and it

2:05:05.480 --> 2:05:08.880
<v Speaker 2>does not metastasize the way that a cancer does. But

2:05:09.640 --> 2:05:15.879
<v Speaker 2>it's not normal tissue either. So it's an interesting disease

2:05:16.040 --> 2:05:18.040
<v Speaker 2>in that respect, and we have a long way to

2:05:18.120 --> 2:05:23.040
<v Speaker 2>go to understanding it. I was thinking this and feeling this,

2:05:23.200 --> 2:05:25.880
<v Speaker 2>and then I went for a walk today and I

2:05:25.920 --> 2:05:30.760
<v Speaker 2>was listening to an episode of Vox's podcast Unexplainable, and

2:05:30.840 --> 2:05:34.640
<v Speaker 2>they have an episode on endometriosis. It's really great. It

2:05:34.760 --> 2:05:38.760
<v Speaker 2>has stories from like fourteen people who have been living

2:05:38.760 --> 2:05:43.480
<v Speaker 2>with endometriosis. I recommend the listen. But they also had

2:05:43.480 --> 2:05:49.440
<v Speaker 2>an interview with someone who researches endometriosis. It's doctor Lisa Griffiths.

2:05:49.520 --> 2:05:53.440
<v Speaker 2>She is at MIT and runs the Center for Gynopathology Research.

2:05:53.960 --> 2:05:58.400
<v Speaker 2>Her research is super fascinating. Its focuses on tissue engineering,

2:05:58.720 --> 2:06:02.040
<v Speaker 2>like growing endometrial ti issue on like chips, and they're

2:06:02.080 --> 2:06:06.280
<v Speaker 2>trying to develop better diagnostic markers that can be used

2:06:06.280 --> 2:06:11.360
<v Speaker 2>to not only diagnose, but then also classify endometriosis into

2:06:11.360 --> 2:06:15.680
<v Speaker 2>different subtypes, which could then theoretically lead to more personalized

2:06:15.760 --> 2:06:20.840
<v Speaker 2>or targeted treatment options, which is amazing. But she also

2:06:20.880 --> 2:06:24.680
<v Speaker 2>brought up this exact same thing that like the language

2:06:24.720 --> 2:06:29.120
<v Speaker 2>that we use surrounding endometriosis is so important, and she

2:06:29.280 --> 2:06:31.800
<v Speaker 2>was saying that, like her collaborators kept calling it a

2:06:31.840 --> 2:06:35.000
<v Speaker 2>benign condition, benign condition, and she was like, I live

2:06:35.040 --> 2:06:38.440
<v Speaker 2>with this, she has endometriosis. She's like, there's nothing benign

2:06:38.440 --> 2:06:42.720
<v Speaker 2>about it. Yeah, right, But it's that difference between quote

2:06:42.800 --> 2:06:48.160
<v Speaker 2>medical language and colloquial language, right, But it matters, right,

2:06:48.240 --> 2:06:50.800
<v Speaker 2>and it influences we are all humans, even in the

2:06:50.840 --> 2:06:54.320
<v Speaker 2>medical community. It influences the way that we perceive it

2:06:54.960 --> 2:06:56.840
<v Speaker 2>and then the way that we treat people who are

2:06:56.880 --> 2:07:01.600
<v Speaker 2>living with it. There are a lot of people doing

2:07:01.640 --> 2:07:06.040
<v Speaker 2>research on endometriosis from so many different angles because there's

2:07:06.080 --> 2:07:09.280
<v Speaker 2>so much that we don't know. So I already mentioned

2:07:09.280 --> 2:07:13.320
<v Speaker 2>some fascinating research by the Center for Gaynopathology Research. There's

2:07:13.320 --> 2:07:16.600
<v Speaker 2>also other groups like Citizen Endo, which is led by

2:07:16.720 --> 2:07:22.760
<v Speaker 2>doctor Noemi Elhadad at Columbia University and their team. Super

2:07:22.840 --> 2:07:26.880
<v Speaker 2>fascinating are using like citizen science y based tools to

2:07:26.960 --> 2:07:31.520
<v Speaker 2>try and better characterize the symptoms of endometriosis, to try

2:07:31.520 --> 2:07:35.880
<v Speaker 2>and bridge the gaps between what clinicians know or think

2:07:35.920 --> 2:07:39.840
<v Speaker 2>they know or think about endometriosis and how people who

2:07:39.920 --> 2:07:44.080
<v Speaker 2>are living with it actually experience endometriosis, which I love

2:07:44.320 --> 2:07:44.680
<v Speaker 2>so much.

2:07:44.680 --> 2:07:46.960
<v Speaker 1>I know, I love I love that project so much.

2:07:46.960 --> 2:07:51.240
<v Speaker 2>It's so cool, I think, honestly, in so many ways,

2:07:51.280 --> 2:07:54.440
<v Speaker 2>we're still at the phase. I think we've talked about

2:07:54.440 --> 2:07:57.520
<v Speaker 2>this in a number of different episodes arin but we're

2:07:57.520 --> 2:07:59.760
<v Speaker 2>at the phase in endometriosis right now where we still

2:07:59.760 --> 2:08:04.200
<v Speaker 2>are trying to just like garner awareness about this condition. Yeah,

2:08:04.920 --> 2:08:09.120
<v Speaker 2>you know, so I have a feeling after this episode

2:08:09.480 --> 2:08:11.200
<v Speaker 2>maybe a lot of our listeners are going to be

2:08:11.640 --> 2:08:14.720
<v Speaker 2>going to their doctor's offices, Like, so, can I ask

2:08:14.760 --> 2:08:16.280
<v Speaker 2>you about endometriosis?

2:08:16.360 --> 2:08:19.800
<v Speaker 1>So I shouldn't be laying in bed all day and

2:08:19.880 --> 2:08:22.040
<v Speaker 1>not able to go to work because of my period.

2:08:22.320 --> 2:08:24.800
<v Speaker 2>Yeah, I mean I didn't even get into like the

2:08:24.840 --> 2:08:28.440
<v Speaker 2>statistics on the number of missed school days, the number

2:08:28.440 --> 2:08:32.800
<v Speaker 2>of missed work days, like the economic EXPINI is in

2:08:32.840 --> 2:08:39.520
<v Speaker 2>the billions of dollars every year. Yeah, so that is

2:08:39.600 --> 2:08:47.600
<v Speaker 2>endometriosis there, It is sources, sources.

2:08:47.840 --> 2:08:51.120
<v Speaker 1>I mentioned. I have some papers, but uh I mentioned

2:08:51.120 --> 2:08:53.800
<v Speaker 1>the four books that I read all great, love them,

2:08:53.960 --> 2:08:56.320
<v Speaker 1>And if you do want to know more about like

2:08:56.440 --> 2:09:00.280
<v Speaker 1>the medical history of endometriosis, who found it? Who made

2:09:00.320 --> 2:09:02.800
<v Speaker 1>this development? And that development sort of the argument over

2:09:02.840 --> 2:09:05.280
<v Speaker 1>who was the first one to describe it? There is

2:09:05.480 --> 2:09:09.120
<v Speaker 1>a very extensive I'm talking like fifth over fifty pages

2:09:09.200 --> 2:09:11.880
<v Speaker 1>paper by neshat at All from twenty twelve that goes

2:09:11.920 --> 2:09:15.440
<v Speaker 1>into all of that. Found that very interesting and in

2:09:15.520 --> 2:09:19.120
<v Speaker 1>terms of the evolutionary biology, those papers that I mentioned

2:09:19.440 --> 2:09:22.520
<v Speaker 1>are both by Dinsdale at All from twenty twenty one.

2:09:23.520 --> 2:09:27.000
<v Speaker 2>I had a number of papers I already said the

2:09:27.040 --> 2:09:31.720
<v Speaker 2>title of one, the epidemiology of endometriosis is poorly understood

2:09:32.120 --> 2:09:36.360
<v Speaker 2>now is poorly known as the pathophysiology and diagnosis are unclear.

2:09:36.720 --> 2:09:39.800
<v Speaker 2>That was from Best Practice and Research Clinical of Stetrics

2:09:39.840 --> 2:09:43.080
<v Speaker 2>and Gynecology from twenty twenty one. There was a number

2:09:43.120 --> 2:09:46.520
<v Speaker 2>of other really interesting papers that dig deeper into what

2:09:46.600 --> 2:09:50.480
<v Speaker 2>we know about the mechanisms of endometriosis. I think my

2:09:50.640 --> 2:09:56.040
<v Speaker 2>favorite one was from Nature Reviews Endochronology in twenty nineteen,

2:09:56.240 --> 2:09:59.000
<v Speaker 2>as well as another one in the Annual Review of

2:09:59.040 --> 2:10:03.400
<v Speaker 2>Pathology mechan of Disease from twenty twenty. We'll post all

2:10:03.480 --> 2:10:06.960
<v Speaker 2>of these sources from this episode and every one of

2:10:06.960 --> 2:10:09.960
<v Speaker 2>our now eighty eight.

2:10:10.360 --> 2:10:13.640
<v Speaker 1>Episodes eighty eight normal season episode right.

2:10:13.520 --> 2:10:17.040
<v Speaker 2>Not including COVID on our website This podcast will kill

2:10:17.080 --> 2:10:17.720
<v Speaker 2>You dot Com.

2:10:18.000 --> 2:10:22.600
<v Speaker 1>We will thank you again so much, Susie for sharing

2:10:22.640 --> 2:10:26.200
<v Speaker 1>your story with us. I love chatting with you, and yeah,

2:10:26.240 --> 2:10:27.600
<v Speaker 1>we just really appreciate it.

2:10:27.720 --> 2:10:30.960
<v Speaker 2>Yeah, thank you. Thank you also to Blowdmobile for providing

2:10:31.000 --> 2:10:34.200
<v Speaker 2>the music for this episode and all of our one

2:10:34.280 --> 2:10:36.720
<v Speaker 2>hundred plus episodes.

2:10:37.480 --> 2:10:40.520
<v Speaker 1>Thank you to Exactly Right Media. We are so proud

2:10:40.600 --> 2:10:42.200
<v Speaker 1>to be a part of this network.

2:10:42.520 --> 2:10:45.480
<v Speaker 2>And thank you to you listeners. We make this podcast

2:10:45.520 --> 2:10:49.360
<v Speaker 2>for you, and thanks for sticking through this really long episode.

2:10:49.400 --> 2:10:50.640
<v Speaker 2>I hope you learned something new.

2:10:51.080 --> 2:10:53.960
<v Speaker 1>I hope so too. Yeah, and a special thank you

2:10:54.080 --> 2:11:00.200
<v Speaker 1>also to our wonderful, incredible, beautiful patrons on patreonatre On.

2:11:00.360 --> 2:11:02.600
<v Speaker 2>Love you so much. Wow.

2:11:03.800 --> 2:11:06.640
<v Speaker 1>Until next time, wash your hands you.

2:11:06.600 --> 2:11:07.520
<v Speaker 2>Feel the animals

2:11:27.360 --> 2:11:27.400
<v Speaker 1>M