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Rachel Gross, Award-Winning Science Journalist and author of Vagina Obscura

Rachel Gross, Award-Winning Science Journalist and author of Vagina Obscura

Endometriosis 2023:
Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC

Hey everyone, how's it going? Uh, let's see this working. Okay, great. Um, thank you for that fantastic introduction and, um, it's an honor to be here and really great to follow Sydnee. Um, I think that was such a presentation full of compassion and care and, and I really love that as like an introduction and context for what I'm going to get into. Um, I know we've had some heavy topics and very practical topics today. I think this might be a little divergence. Um, what I really do is focus on teasing out scientific and medical bias. Um, and that's what I'm going to do today. Um, my book, vagina Obscura, an anatomical voyage is sort of a journey to the center of the female body. And really by that I mean all bodies that have this anatomy, the uterus, the ovaries, the clitoris, the vulva. Um, and I I really think that it's important to know kind of the roots of a lot of these biases that influence our relationship with our bodies, our doctor's attitudes towards our bodies, um, and how science has explored and not explored our bodies.

Um, so I hope it's helpful. Um, I just wanted to start out by saying that this book gets its title from the camera Obscura, which is a really important technological development in the history of camera technology. Um, it enabled us to project an image from the outside to the inside. Um, however, to do so, it had to really manipulate and kind of skew this image where either it'd be very, very tiny or it ended up being blurry, um, or upside down. So this is real knowledge that we're getting from the outside world, but we have to put a certain lens on it that minimizes details in the background, kind of blurs it out like your iPhone camera and portrait mode, um, and really zooms in on a specific aspect of the female body. Um, and what I kind of found through my historical research and through talking to hundreds of doctors and scientists is that very often that focus, that lens that science is taking is the female body as reproductive.

And by that I mean kind of seen as like a walking womb, um, a baby maker and not much else. Um, and the other association you get a lot is disease and degeneration with the organs of reproduction. Um, I argue that all of these organs, um, are doing so much more than preparing for a baby or making a baby, which many of us will never do throughout our lives. And they're important, our body wide health. And that studying that regenerative and dynamic and resilient aspect is really important to taking care of these bodies, including an endometriosis. Uh, so, um, <laugh>, I'm gonna start back at the roots of Western medicine, um, with our friend Hippocrates, the OG doctor. Um, so, um, I thought it was really interesting that Sydnee talked a lot about shame in the context of disability because my research also led me to really zoom in on what we mean by shame and why it has colored the science of the genitals and the reproductive organs for so long.

Um, so Hippocrates, uh, he never studied a female body. He was proud of this and bragged about it. Um, he said, I only know what midwives have taught me. Um, and yet he decided to name our genitals. Um, he named them, I'll butcher this, I'm sure in ancient Greek, to otan the shame parts, um, and to him that applied to men and women. Um, but as time went on, this concept of shame became attached specifically to women's genitals and sexual organs. Um, so in the 15 hundreds, um, a anatomist named Charles sdn dissected a clitoris for the first time, and he, he thought it was used for urinating and he also called it mamre onto the shame member. Um, this continued even today in German and Danish, you have sham lippin, the labia, which means the shame lips, and you have words in gynecology textbooks like Puum, which is Latin for the part for which you should be ashamed.

Um, we'll get to that <laugh>. Um, but my point is there's been a very heavy bias against female sexuality from the beginning of this research, and it has tinged what we know about the female body and what has been studied, and I think led a lot of people to study reproduction over sexuality, pleasure and the other stuff these organs were doing. Um, the reason for this little mole is that Galen another, um, famous ancient doctor, um, he said that the female, uh, the female sex organs were like the eyes of a mole by which he meant they were inferior to the male. They were sort of an inside out version. They didn't really work very well. And he literally said that the uterus was an inside out penis and the ovaries were inside out testicles. Um, and by focusing on these parts as like the inverse of the mail, um, and focusing on the uterus and the ovaries, he really left out the clitoris pleasure and all that fun stuff.

Um, he really made the focus on the uterus. Um, so things are changing, I'm happy to say 2000 years later. Um, we did have a very large debate, um, within anatomy to get rid of that word I mentioned called puum, the part for which you should be ashamed. Um, I think what's interesting is there was a ton of to getting rid of this word, even though people don't really use it anymore. But there was this idea that it was part of tradition and history, um, and that was really shocking. And I spoke with a lot of women who had conditions like ental neuralgia, a nerve condition you may be familiar with, where they felt a ton of shame coming to their doctors because this was affecting their vulva and clitoris causing pain there and they felt dirty or like there was something sexual they had done wrong. Um, and so shame really affects how we seek healthcare. Um, surveys find that a third of women don't come to doctors with gynecological problems. Um, 65% in England can't say vagina or vulva or feel uncomfortable doing so and so they literally delay care that has to do with these organs for years. And as we know, delaying care with something like Endo, not even to mention all the challenges in getting care when you aren't yourself delaying it, um, can have really severe consequences.

Um, so I'm kind of gonna give a little whirlwind. That's me, <laugh>. Um, I'm gonna give a whirlwind tour of three of these organs that have recently been reimagined, um, by doctors who have brought a new lens and new ideas to the field. And I, I think that they say a lot about how we're reimagining <laugh> the uterus and endometriosis is two. Um, and just how science has viewed the female body. Um, so I start with the clitoris often, um, because it is the best example of how something as concrete and unchanging as a part of the body that's been with us for millennia has absolutely transformed in the scientific literature in this case being actively lost and found again and again and again. Um, so, um, I don't know if you're familiar with the shape, um, anyone familiar with the shape? Cool. Okay. Yeah.

Yeah, 15% maybe. Um, the reason why many of us are not is just because, like, we aren't taught this in school because there isn't a huge focus on female sexuality and because it took millennia to uncover this So quick anatomy lesson, um, this is your entire clitoris. Um, the tip of it, I kind of call it the beak, is the glands. That's the part you can see and touch the fun part. Um, and it's less than 10% of the organ. There's also a shaft that goes back. Um, there's these two arms that fly back into the pelvis and these two erectile bulbs that hug the vagina and the urethra. Um, and that's 90%. So it's like an iceberg organ. It really extends up to like four inches each way. Um, it's massive and there are very good reasons why most of us don't know that, which I'll get into.

Um, so I did mention that the clitoris was sort of dismissed by some of these western medicine doctors. That is not to say that it didn't crop up in Chinese poetry and in medieval texts even. But I do kind of follow the path of western medicine and how it was translated and kind of had this outsized influence on what medicine ended up knowing. And so there was a dark day for the clitoris for many centuries, um, until the 15 hundreds, which is kind of the golden age of anatomy. Um, you get people dissecting bodies and no longer relying on these old masters who were saying like, we dissected some dogs and we talked to some midwives and this is what the female body is. Um, so Vaus is known as the father of anatomy. He's a Flemish physician in Italy, and he's kind of opening bodies, um, in auditoriums on these grand stages before all these learned men.

Um, this is the cover of his super famous cabra, uh, corpus fabrica, um, fabric of the body, um, which became an important ana anatomical text. And I think what's really interesting here is that again, you were not getting many female bodies looked at directly, um, because many bodies came from hain criminals, which were not women generally. However, he made this really, uh, pointed choice to choose having the central body in this image be a woman whose uterus and belly are being opened up. And all of these men are kind of gazing creepily over her. Um, and I, I would say that this kind of reflects this idea that at this time, like the male scientist was sort of the conqueror, the kind of colonizer and the explorer and the female body. It was the terrain on which discoveries were being made, and the uterus was sort of seen as like the ultimate mystery, um, because it was where baby making happened and it was something that men didn't have.

Um, and so it was appropriate that this would be kind of the object of everyone's fascination. Um, and so visas was like an excellent dissector and he proved a lot of old things wrong. But another thing I find very interesting is he still showed the uterus like this, which might look like something else to you. So <laugh>, I remember how I mentioned that the uterus was considered an inside out penis. Um, I think this really shows that no matter how good your science is and how objective and neutral your methods are, you really see what you can imagine. You can't see what you can't imagine, which is something scientists told me again and again throughout my research for this book. Um, and so the uterus was once again seen as an inside out penis. And Vaus actually argued that the clitoris did not exist. Um, he said he had never seen a PHUs in any healthy women, only in quote hermaphrodites.

We don't know what he meant. Um, but he was strenuous against the idea of this quote, new and useless organ existing. Um, it was only his students, um, who said, actually, we find this in every woman we dissect, and it is an important part of anatomy and we think it should be named a more veneris the pleasure or joy of Venus. Um, one of those students was named, uh, Rado Colombo. So literally a guy named Colombo claimed to have discovered the clitoris. I cannot make this up, uh, but I mean, to their credit, they were pointing out that this is an important function and pleasure and sexuality. And you know, a hundred years later, um, you would get midwives that actually clearly knew a ton about the clitoris. And they would say like, it swells and becomes erect when the spirits come within it. And without this, there would be no pleasure or delight in copulation, and women would not have sex.

So people knew what was going on, but there was a lot of kind of this skewed focus on the female body. Um, our friend Freud, uh, I won't get too deep, but if anyone wants to fight me on Freud, I would be happy to. Um, in this context, he, he's made two very important assertions, um, with regard to the clitoris. He said it was an infantile organ inappropriate to the adult woman. This came from absolutely no research and he said that in order to become a true mature woman, a girl had to transfer her orgasm from her vagina to her clitoris, which is biologically impossible. Um, and relegated generations and generations of women to feeling kind of broken and inadequate about their sexual response, which I think is a common theme with old doctors, um, relevant to this community. He also made a really important turn in the study of what was known as hysteria at the time.

So, uh, you've probably all heard of the hysteria that was in Greek times. That meant the wandering womb suffocation by the womb. And we can kind of all roll our eyes at how sexist and ridiculous that is. Um, but what was really important I think, was that hysteria was considered a medical diagnosis. It was considered biological and that the uterus was physically moving for a long time and inferred its time. He sort of resurrected this idea and he switched the cause. So he saw a lot of women with pelvic symptoms, menstrual symptoms, pain, anxiety, and he said, this is actually an unsolved psychic conflict that is turning into physical symptoms. And there have been really interesting arguments that would be impossible to prove, but by, um, endometriosis surgeons that actually a huge portion of his patients may have had endometriosis and menstrual disorders. Um, and so what he did was kind of psycho somatize a lot of pain.

And I think that really, uh, really twisted, um, the treatment of these patients for a long, long time. Um, I kind of in my book follow a lot of these trailblazers who reimagine some of these organs. And one is a urologist named Helen O'Connell, um, who's kind of credited with mapping the clitoris. Um, she was active in the feminist movement. Um, she's the first female urologist in Australia and she noticed that in her textbooks, um, you would never, never see this full organ. You would just either see the nub labeled as the clitoris or it would be omitted entirely. And she ended up doing some of the first like mri, um, imaging and like micro dissection to show the world that this was an iceberg organ and that um, women were capable of great pleasure and that this organ should be protected when it came to surgeries and other treatments that um, her fellow urologists weren't uh, aware of.

Um, uh, I can go past this, but the kind of shape of the clitoris has become sort of this feminist icon I think for um, for centering female pleasure and women as like subjects and not just objects of male pleasure. Um, and I recently did an investigation for the New York Times that showed that medicine to this day really neglects, um, the clitoris. And that is actively harming a lot of women who go through cancer treatments or other benign conditions, um, or labiaplasty. Um, and that most gynecologists who you would think would know the most about the female body actually studiously avoid the clitoris, whether out of squeamishness or fear of offending the patient or complete ignorance cuz you don't get taught much in medical school. Um, but hopefully that is changing. So the next organ I wanna look at is the ovaries. Um, I mentioned they were considered like, uh, internal testicles.

They actually didn't have their own name until the 16 hundreds. They were just called female testicles. Uh, and in the 16 hundreds they got their name after the ovaries of birds. Um, and I would say that medicine has focused very strongly on their ability to produce eggs, um, and not so much on the fact that they produce hormones that support every part of your body from blood to brain, uh, to heart. Um, and you know, I've talked to women who, like on the operating table, have been asked if they want a hysterectomy and it ended up being a total hysterectomy including the ovaries. And they were not explained that that would put them into a very abrupt menopause symptoms and affect them for the rest of their life. Cuz again, I just think a lot of us don't think about these organs unless we actively need to because we are thinking about pregnancy or ivf.

But these organs are part of our bodies and supporting us our whole lives. Um, so in my book I end up talking to two ovarian biologists who started studying chickens, which are super interesting. They only have one ovary, the left, the other one deteriorates after birth. Um, and if you cut out that ovary, it actually grows back completely or it grows into a testes. Um, and that was actually a hint that the ovaries are very regenerative. Um, and there's been this kind of bias for a long time that the male body is regenerative, the female body is degenerative or prone to disease. And a lot of people know that men produce sperm every time they breathe. About 1500 sperm are born. Um, meanwhile you're often taught in biology, this fact that a female child is born with all the eggs she'll ever have, they kind of start trickling away around puberty and by menopause you're out.

That was sort of the hourglass, um, image that was on the screen before. Um, so these chicken scientists, um, were like, why do we think this is true? Why does everyone think that eggs are a finite resource? Um, and they found out that it wasn't the case for mice, giraffes, cows and many other species. Um, so the question was still, why do we think this for women so strongly? And this was like the most heated debate in the ovarian biology world, a small but heated world. Um, it was like there was so much resistance and I'm really interested in areas of like scientific conflict where it seems to be about something deeper than the science and about kind of deeply held biases and attitudes towards, in this case I think gender and what men and women are for and what they are capable of. Um, and it took about 20 years of gathering research.

Um, this is a screen showing, um, basically they found stem cells in the ovaries. And you know, over the past 15 years we found that stem cells are in most of our organs and most of our organs have the ability to regenerate in a really powerful way. And these stem cells can differentiate. Um, in this case they found that they could, some of these stem cells could turn into new eggs. So we have the capability of producing new eggs throughout our lifetime. Um, and they're still studying how this happens in the female body cuz most of the research is in the lab and in other animals. Um, but it looks to be the case and the textbooks are finally changing 15 years later. Um, so I kind of switched the metaphor instead of an hourglass or a ticking time bomb, you can think of ovaries as potentially rechargeable batteries.

Um, and as something that can regenerate, which is important I would say. Um, so then to the uterus, um, the uterus, I think, you know, many doctors and scientists and many of us I think have internalized this idea that it's an organ that is important and interesting during pregnancy. Um, you know, it grows up to 40 times its size, it creates the placenta a whole new organ. Um, it has this like mother fetus barrier that's really complex. Um, and it is awesome, but it's been pretty ignored when it's not doing its thing in pregnancy, which I would argue is almost even cooler. Um, and yeah, that's a huge shame. Um, and it's also associated with disease. This is I think one of, um, uh, Dr. Sampson's, uh, really intricate drawings of, uh, cys and endometriosis, but Dr. Sukin can correct me if I am wrong, <laugh>.

Um, so a hippocratic text in the fi in the 500 s said the womb is the origin of all diseases. And you know, it's not like reproductive disease doesn't exist, obviously, but I think that the focus on the uterus as either about pregnancy and baby making or about disease has really limited how we study this organ and limited even how we end up treating some of those diseases. Um, and uh, in my book, I I ended up focusing on a bioengineer you might know cause she's very involved in endo found named Dr. Linda Griffith at m i t. Um, and her story was crazy to me. Um, she was a bioengineer, she's responsible for this thing called the ear mouse, which was an ear grown on the back of a mouse in the nineties that kind of showed that you could do, um, engineering with biology and living cells.

Um, but throughout her career she was dealing with severe endometriosis and being gaslit every step of the way. She was literally told by a doctor that she was rejecting her role as a woman and that she should get pregnant. Um, this was in the two thousands in Berkeley of all places. Um, and so as I began following her story, um, I realized that that wasn't just like an offhand comment. And like many of you I'm sure have experienced these attitudes, I see people nodding, but like a textbook from the 1990s that she showed me, um, said that this is a disease that afflicts, neurotic, anxious white women in their thirties who have delayed childbirth. And that's almost a direct quote, I should just put the quote up there. Um, and it's also, have you guys heard the term, the Career Woman's disease? Is that familiar to anyone?

A little bit. Um, so these were these stereotypes going around. Um, and I, what, what ended up being really important to me to realize was how much that harmed anyone who fell outside of this particular stereotype of a white well-to-do professional woman. And I talked to trans men who have had endometriosis and how like systematically they were barred from treatment. They literally couldn't access women's and reproductive healthcare through their insurance. They were discouraged and prevented from getting a hysterectomy when that seemed like the best course of action because it was worried it would contribute to their transition by doctors who were against that. Um, I talked to Southeast Asian women who was disabled, who was treated as a drug seeker and had to eventually bring her husband in to like prove that she actually was in deep pelvic pain, um, to get attention. And by then it was very, very late in the process.

Um, and I talked to black women who dealt with this incredibly pernicious and racist assumption that they could deal with extreme pain and that whatever amount of pain they were going through with their menstrual cycles was normal and that they would tough it out. So I think these biases aren't just really harmful to the people that fall right within those stereotypes like Linda Griffith. They really make sure that people that go like one degree beyond feminine, white, whatever, kind of fall through the cracks. Um, and this is I think partly why eventually Linda was able to turn her scientific lens to this disease and say, okay, I know I work in a very male dominated masculinist techy science, um, what can I do to make sure that endometriosis and uterine science is taken seriously? And so she opened a bioengineering lab, um, seated by Dr. Sukin that basically said, this is one of the most interesting problems in bioengineering.

The science of menstruation is deeply like serious and complex. Uh, the uterus produces a new lining every month for most people with this anatomy, uh, with spiraling blood vessels full of stem cells using stem cells from the bone marrow. It's one of the most regenerative organs in the body, and yet we haven't studied it. And it actually has so much to offer science besides like solving really important diseases. Um, the stem cells from the uterus have been taken out and turned into cells to help with Parkinson's or diabetes. Um, and menstrual blood in another project associated with endo found has been found to be a really important, uh, diagnostic tests that has biomarkers of endometriosis, reproductive disease, but also inflammation and fertility. And it's being understudied and underutilized because of stigma and shame and people thinking of it as quote women's problems, um, which unfortunately are undervalued.

One fact I forgot to mention was, um, you may have heard that in 1993 the NIH required women and minorities to be, um, included in clinical trials, but it wasn't until 2014 that the NIH got its own branch dedicated to Volvo vaginal and reproductive health that was not about fertility and babies. And even so that branch is still under the Department of Child Health and Development. So just think about kind of the biases of why uteruses and vaginas matter. Is it for childhood health or for the people who have these organs? Um, so, oh, that was not a button. Um, so yes, um, I think my point here was that for so long there had been a lot of different silos and a lot of people working on endometriosis and menstrual health as like a, a women's issue, um, women's disease. And that has been like historically underfunded and it's like that's, that's the root of the problem, like that we undervalue and underfund things called women's diseases.

But I think it, it's really interesting that someone chose to kind of speak the language of the world you are in and you have to be practical sometimes and kind of looking at this organ as not just a problem, not just a pregnancy organ, but something that had a lot of potential to offer science and could kind of change the way that people with uteruses see themselves. Um, which I think is important. So, um, Dr. Sampson, um, early endometriosis researcher used this phrase, the pelvic chameleon to describe endometriosis. Um, meaning that it was an enigma mysterious, impossible to get at. And like I would argue that those kind of phrases make it more difficult to study. If you assume that something is hard to solve, then it's gonna make it harder, um, when it is well complex, a biological problem. Um, so in the imagery in my book, uh, we sort of changed it to the uterus itself being a pelvic chameleon, being something transformative, capable of change, uh, resilient and able to grow back what it has lost.

Um, and I think I wanna end on a thought about language. Um, so I, I talk to a lot of doctors and I read a lot of medical papers and often there is some really interesting language that has a lot of hidden bias that a lot of people aren't aware of. Um, that I think really seeps deeply into how patients view their care and themselves and how doctors view them. So recently I wrote about specifically pregnancy language, um, words like incompetent cervix, which just means the cervix opens up, um, earlier than it should in pregnancy and not that it should have its annual review. Um, and other words like failure to progress or, um, which has to do with labor and kind of insinuates that a woman is failing when often it's the medical care or like the inability to wait longer because there's someone else in line that is the problem.

Um, or the very famous geriatric pregnancy, um, also known as elderly prima gravida, which I think goes along with that bias about like, women are made to have kids and if you delay it then you're gonna get disease and like shame on you. Um, it kind of again has this blamy shamey aspect that applies to the woman who's like doing her best and so is her body. Um, and they also can be medically inaccurate or very vague. Um, which is another thing I argue is that it's both bad science and medicine and it's really harmful. Um, and these kind of biases can be passed from doctor to doctor when they show up in medical notes. So I think it's something to pay attention to and like I pay attention when I talk to myself, when I think about my own bodily organs, like it has helped me to think of them as regenerative and helping me in doing their best and not just a liability.

Um, so these are just a few of the words that the doctors and scientists and I book used to describe, um, these parts of the body. And they were very different and these were things that were kind of repeated and became patterns. So the idea that these are interconnected organs, not just the reproductive system, they're really communicating through hormones and stem cells with your entire body supporting your entire body and important whether or not you decide to get pregnant throughout your entire life. Um, the idea of immunity, which the uterus is very involved in, um, and so is the vaginal microbiome. Um, these words I keep repeating like dynamic and resilient because I do think that they make a difference and they are, I think for centuries we've been told that the female body parts and like the egg for instance, are passive and kind of weight for action from the male body and really like they're doing their whole thing on their own and they're super competent.

In fact, one of my favorite facts is that sperm are considered incompetent until they enter the female reproductive tract and get chemically changed. And that is a science word, <laugh>. Um, and yeah, regenerating. Um, yeah, the idea of like body wide and lifelong health, not just reproductive health I think is very important. Um, and that was my whirlwind tour. I hope we have time for some questions and I know I didn't get to a lot especially about endometriosis and I'm very happy to talk about anything that I missed or that I got wrong. So thank you so much.

Hi. I think this is one of the most, uh, exciting, uh, talk of my life too. I have to admit I got her to this meeting by accident. I have read some of the articles in New York Times, but I didn't, I never associated, I went to my, uh, my daughter's book reading. She's a writer too. She writes on other issues. But, um, it was a book reading in Brooklyn I think. And suddenly I saw this book and the subject has been in my mind, but somebody has written and I just scanned and I grabbed two copies actually. So, and my daughter made fun of me. You again picked something you always do. What is this? So we did call Rachel and I had the pleasure of meeting her in person two days ago at Harvard Club and I had my talk and I was excellent talk, you know, she stayed the whole time and we talked about stem cells and my experience with Linda Griffith.

Linda Griffith, in fact, uh, was uh, elated when we start the foundation. She called us, she didn't know what to name. It was for, uh, gynecologic lab for benign disease. But then she changed the name to endometriosis also. It was very exciting. And then at that time, stem cell issue was just coming. So, so stem cell issue is like epi epidemiology is originated from the time you said Socrates time, you know, book before you were not here this morning. I kind of scanned through old Greek and old even touched to Freud about these things. But you have to understand, don't criticize be nice to Sampson. Samson Sampson named this disease but lived hundred years ago. He was before Freud. He was fighting against other men who really saw women so differently. They thought the the babies were coming somewhere else. That kind of thinking we still have it, you know who they vote for also.

So I'm gonna cut short, but this is incredible. You know, the the thing is, you know, like, like getting some two personalities, famous people talk about enemy users. Getting a writer talk about these issues is hundred times more important because then you get intellectual brains suck into this. As again, we, you see how feeble the doctors are. Doctors have very little voice because they're stuck in their little corner dealing with, and they have other, they're bright people maybe at that time and they went to medical school. But I think they dis their brains disintegrate. And you cannot exclude me on this. Also, maybe I escaped a little bit <laugh>. So thank you very much. I really appreciate your talk from the bottom of my heart.

It's an honor. Dr. Sukin, thank you for bringing me here. It's, it's humbling to talk to all of you, uh, personal experience with this. Um,

I just wanna say thank you so much for this presentation. I think that, you know, breaking down the barriers and the walls of shame around how women feel about themselves is what's really important to note here. I really, um, you're very smart <laugh>. You're very intelligent and just bringing all that together for a mind like Dr. Sukin and an everyday simple mind like mine, um, you did very well at doing that. And I just think like you, like I said, changing the way women or people with the uterus feel about themself is really important and a really great step forward. Oh

My gosh, <laugh>, thank you so much. <laugh>, thank you for seeing that. I totally agree with you that breaking down those feelings of shame and stigma. Um, and I think to reiterate what Sydnee was saying, like realizing that it's not you, it's not about you or your body being broken or inadequate, it's about this system that's been set up to make you feel this way and understanding where that comes from can be helpful and empowering or at least be a small step towards that. So thank you.

Um, yeah, so I'm like a little bit younger than I think most people here. I'm in high school. Um, and so <laugh>, um, I thought that was really cool and I think that it made me like aware of the fact that I feel like even though I haven't had much experience with like the CLT and stuff like that <laugh>, um, like I think there is some internalized like shame that I felt and that I hadn't really thought about that before you talked about it. So I just have a question about like, even in being able to like publish this book and getting interested in this topic, did you ever encounter any like, resistance to that and how did you like combat that and fight against the people who were kind of like doubting you and doubting like the reas like trying to spread awareness about this type of stuff?

First of all, thank you for being here. It gives me like so much hope to see all of these minds connecting from like every walk of life. Um, and thank you for a really, really good question. I could go on a long time on that. Um, even literally the title was kind of question like, do we want the word vagina on a book that people will be reading on the subway? And I was like, yes, we do <laugh> like literally the first step to removing shame and stigma is talking about this in not necessarily neutral but frank terms. Um, which some may find graphic inappropriate or we are a family paper as the Washington Post has told me. Um, but like that's kind of the problem is if like literally the words we grew up with are all I find like vague and euphemizing, like the nether regions, the private parts between your legs down there.

Like we'll do anything to not say these words like it's fold de mort or whatever. Um, and, and I, you know, like there are other very childish and like cutesy terms that I heard that kids grew up with, especially in the uk like mini fufu fanny and like tuppins and stuff. And I just think that speaks a lot about are we comfortable pointing to our own body and what gives us pain and pleasure and what we're experiencing. Um, if if we can't start by naming it, then we are pretty lost, I think. So I hope that even if the book ended up getting censored in some ways and didn't get some coverage by certain newspapers, it can be a small step in making this more okay and pushing the book, um, pushing the doors open a little bit. Um, but yes, I've especially, um, as a freelance reporter who writes a lot for the times and like places that are kind of mainstream, um, I have been told like focus let on Less on the clitoris, more on endometriosis actually.

Um, which is fascinating cuz I'm like, I would love to focus more on endometriosis. Half of my editors when I started writing didn't even know what that word meant and I had to explain and teach them often they were 65 year old men. Um, but I do think that there's, I still think it's not good for coverage of this to say that the clitoris is out of bounds and that's not serious and that's not medical. Um, but if we know it's causing lots of pain and it's been recognized by the medical community, then we can cover it. Cause I think we need to be telling stories that aren't told yet. Um, many of them of which are involved in endometriosis, like, um, how it affects many other parts than fertility. Like that's something that I push all the time is that it's not just a disease of fertility. Um, so yeah, there's been a lot of resistance, but ultimately I'm really happy that it ended up being pretty in your face. Thank you. Yeah.

Um, I, I got one. Uh, thank you for a really inspiring and fun and just joyful talk after, you know, a lot of heavy but true things this morning. Um, I just wanted to to bring up how important I think to know what the organs look like. You know, like when you showed the clitoris and you asked, who knows that it looks like this almost no one does. And the fact that we don't know, like even what a uterus looks like a real one or what a clitoris looks like, a real one. It steals our ability to take control of our body and our pain and explain like, oh, it hurts here. Maybe it's an ovary, you know? Um, so I'm so glad that you, you know, you brought that up, the importance of like showing what things look like and just for fun. So I'm, I'm from France, I'm French, and a few years ago there was a kind of gorilla marketing campaign from a feminist, um, movement that put up these posters everywhere in every city of, in France of, uh, anatomically correct clitoris. And they did it in like really cool colors. Like it looked like the cover of an album. And all it said was, this is not a pretzel, this is not an alien. And they didn't name it otherwise. They would've been censored by, you know, justice department, whatever the religious people in town. But just putting it up and having people think, huh, what the heck is that thing? And it was like a great way to start a conversation around it. Thank you.

Thank you so much. I love that <laugh>. Yeah, I definitely, um, with my friend who's a, she's known as the clitoris artist, Sophia Wallace, and she does sculptures like this. Um, but she often says, why do we have an iconography of the fallis? That's everywhere. We all know when we see a tower, like we think penis or whatever. Um, but why don't we have an iconography of the clitoris, which is such an unusual shape. I totally see it. Like I usually call it like a penguin spaceship, like kind of very bird leg with a beak. There's actually on the cover of the book, it's um, it's hard to see, but there's a clitoral, a little flying clitoris in the background. It's one of the Easter eggs, um, <laugh> and um, oh, and I should probably say there, there should be signed books available after this.

Um, but to your point, if I have a little, if I have a minute or a couple minutes, um, thank you, um, about being able to see the organs. I totally agree with you. I had never seen the clitoral shape before I started doing this book. And I, like my mom is a doctor, um, I went to Berkeley, I took a fem sex class. Like that's ridiculous. We've known about this four centuries though it's been buried and found again. Um, and I, I didn't see uteruses and ovaries until I, um, shadowed in hospitals for this as well. Um, and I think, again, no offense to doctors, but like the kind of language that I hear in doctor's offices when I go reporting is kind of like, oh, your cervix is super weak. Oh, you have like a damaged uterus or there's something weird. It's a retro form and like, or your ovaries have these big cysts and they're diseased and like just the way that you're introduced to these organs that you can't see makes you think of them as associated with like degeneration and disease.

And two, actually see them. Like I, I got, I was lucky enough to see some babies come out of some uteruses. It's just like this muscular like pear like thing that I like would be like a small fist and then like a giant cantaloupe that just like pumps out the baby. Um, and to think of, yeah, the ovaries as like, okay, when I learned kind of the science of ovulation, um, I learned that a follicle, which is sort of like houses the egg every month, um, first of all you get like a cohort of eggs like 20 to 30 and they fight each other essentially and they grow bigger and bigger. And the biggest one produces hormones that inhibit the others and cause them to wither away and die. So it's like super violent and competitive, which I was like, why do we only learn about sperm as competing and being competitive cuz this is like bloody.

Um, and the one that wins the a explodes out of this follicle, which can be an inch in size, an inch off the ovary, which is huge and it's like a bloody mess of hormones and those hormones end up influencing your menstrual cycle. Um, and endometriosis unfortunately. Um, but it's like, yeah, when you think about getting a sharp pain before your period or like realizing that your pain is in your ovary that is not in your head, like that is a literal explosion happening in the side of your body. Like of course we can feel that and we've been told like, oh, it's just a little cramped, don't worry about it. Um, I was like, this is crazy. So yeah, I think it makes a big difference to be able to picture some of this science. Um, and, and and, and there's a lot of amazing anatomical imagery going on like that. I think especially on social media, if you find a lot of the gynecologists that are kind of social justicey on social media, they're great. Uh, thank you.

Um, oh, I have one question. Um, thank you so much for this. You are absolutely brilliant and it really, really, um, brings about, um, the misconceptions of what we consider or what the world views a clitoris as. And it's typically known as like a bean and <laugh> some bean shape and it's really more like a wishbone. And I think that has a lot of, um, symbolic meaning to it. Yeah. Um, and I was just curious cuz you did mention that at a young age, people, um, teach their, um, children, you know, more reserved terms like private areas and whatnot. And I know you're, you're so brilliant, like you would wanna do science things, but have you ever considered writing a children's book?

Oh, that's one of my dreams. Um, I, I often get ca called the sort of the adult Miss Frizzle. Um, and like that's, which is an honor obviously. And I would love to do a graphic novel that basically is a, especially because, um, I mean I have a lot of issues with sex ed in this country, but what I sort of, yes, as we all do and like there's a lot of really good inclusive sex set that is coming up. Um, I think, but the way it was taught to me, and maybe to many of you was like this scary fear-based thing, um, that you're, when you hit puberty, you need to not get pregnant, you need to not get STDs. And at some point you're gonna start bleeding and it's gonna be scary and you're not gonna have control and you're probably gonna be wearing white pants for some reason, <laugh>.

Um, and I feel like it would've been so different if it was presented to me as like, not just your body is a wonderland though. It is. But like these changes that are happening are like crazy cool biologically. Like your ovaries are kind of like coming out of this han solo suspended, um, time warp and starting to like do all these things that will impact your entire body, all your tissues, um, to lay out, to learn the science of hormones as something transformative and something that supports your bodily health and to learn about your uterus as not just yeah, a liability that you have to make sure to like plug it up, don't get pregnant. Um, but it's, it's dynamically transforming and essentially creating a new organ, the uterine lining every month. And like, you know, you're still gonna have pain and problems and awkwardness, but it would've just started off my relationship with my body on a much better footing. Um, and like that's what I would love to help, help support in the future. Um, oh, sorry,

I didn't mean to interrupt, but I was gonna say the only book I knew about this growing up was a Judy Bloom. Um, are you There? And Period. Period. And that was the only book that ever existed and it wasn't a picture book and you know, it wasn't, it, it didn't provide everything, you know, but it was a good start. And I'm like, but I don't, I think there needs to be some work out there.

I i, if people are interested or have like kids, like there are a lot more, I mean, I dunno now

Cause I don't have kids

<laugh>, I don't either <laugh> the kids books, right? Oh my God, I briefly looked because I was interested in this question and there actually are a ton of cool inclusive kids puberty books now. So just saying there, there

Are, but yeah, <laugh> the adult graphic novel. Thank you. Yeah. For those of us who missed it, maybe it can be like two-sided for those going through puberty and those who already have arrived. Yeah, no, thank you. I'm definitely in the works. <laugh>, hi. Um, I wanna thank you, thank you for the work that you've done. Um, and I, yeah, thank you for being here, <laugh>, and I wanna kind of implore everybody. It's like we should all do that kind of research and should know like that much information, it is so easy, like in my 30 year journey to be diagnosed so easy to, um, kind of fall into being victimized by by well-meaning doctors who have their biases and, and it's so easy to be like gaslighted by those, I know that, um, a lot of sometimes biased people, like it'll be overt biases that you hear about and you can catch them right away and say, oh, I'm not gonna do that.

Um, I went to a fertility doctor who who said, uh, well maybe the reason you can't have children is because of karma. Karma. Um, I had, you know, a couple of surgeons who said, you're 40, what do you need your reproductive organs for? Ah, you know, things like that. And so those things are easy to catch and do your research on and then can influence you to advocate for yourself. But they're also well-meaning doctors who, um, it can kind of, their biases can slip under the radar. Like I had a doctor once who as soon as he came in, he didn't look at any of my charts, he didn't, uh, do a physical exam at all. He started asking me about my personality and my boyfriend's personality and he was trying to diagnose me as type a <laugh>. And because I think he had in his mind already what he was gonna say that I had based on what he thought my personality was in the 10 seconds that he spent interviewing me.

So anyway, my point is not to complain about doctors, but just please, please educate yourselves that much. Like cross educate yourself. Don't just look at one source, look at a lot of different sources, talk to different people, and before you make any decisions, just really think about what was I told. Don't let it gaslight you into making a decision that's wrong for you, <laugh>. And, and don't let how much time it takes for you to make decisions, make you feel shamed. Like you're wasting everybody's time. Because that's the thing I went through too, it's like, oh my gosh, three doctors have said I'm too old to have my reproductive organs. Maybe I am just wasting people's time. No <laugh>, the right doctors are out there. <laugh> also just

Speak back to them. They're also people if they, they say something that you're uncomfortable with about age, make them educated. I mean, they're like,

Yeah, and you can try, but like sometimes you have to balance like take care of yourself first, like get the help you need first and then <laugh>, but like then

Try to, yeah, a

Good therapist can help. We can, sometimes a good therapist can help. We can sometimes talk to doctors in ways that they don't always listen to me. Oh yeah, your one last question.

Hi Rachel. My name is CG and I just wanna say that, um, I absolutely enjoyed your presentation. Um, so I do not, I've, I've never been surrounded by so many women who know what I'm going through and what I feel and what I think. Um, in our culture. I'm Cuban, you know, there's a lot of things you just don't talk about. And, um, growing up, you know, keeping secrets was harmful to my person, was harmful to my mental health and I rebel against that. Um, you know, as a mom, I freaked my mom out because I'm, we are so open with our children that as soon as my daughter was two and three years old, I was naming her parts and she knew what her parts were, who could see them, who could help her clean them and who could touch them, right? Doctors, gloves, you know, and, and it has carried on through all three children.

They know vagina, they know a penis, they know everything because it's their body. And I want them to be able to communicate what hurts or what has a rash or, you know, and when it came time for my surgery, you know, my children were very anxious. Um, they have been traumatized through this process of me constantly disappearing into a hospital for a week, you know, a week here, a week there, or weeks at a time. And, um, you know, that's caused a lot of like separation anxiety. So when I knew I was coming to New York for two weeks, you know, my goal was to prepare them as best as I could. And in part, you know, it was talking about what I'm having done. Well, mommy's having your uterus out. Well how do they take it out? Well, they take it out through my vagina, just like you came out <laugh>, you know, and people were like, I remember my godmother was a little like put off by that. Like, just kind of shocked. Like why would you tell a four and a seven year old that, and it's like, if I was having knee surgery, would there be like, would it be shameful to tell them that? No, you would tell them you're having knee surgery, you know, this is a body, this is an anatomy. There's nothing wrong with teaching the youth about their bodies. And um, just hearing from you and, and knowing I'm not alone in that is just I'm gonna go home and be like, mom, vagina, obscura, <laugh>.

So bring her, I'm gonna bring her a coffee <laugh>.

That was so moving. Thank you. I'm gonna like tear up on stage. Um, yeah and I think again, I was just thinking while Sydney was talking about how uh, we can think of disability as this connecting force and this vulnerability that unites us and makes us more interconnected. And similarly talking about these anatomical issues to our kids who like will definitely in some way deal with something similar, whether it's them, their partner, someone they know, like, like you said, like secrets only isolate us and keep us further from ourselves and the people around us. Like even if you don't know how, giving them that information is going to empower them later on and probably gonna make them understand you and you them better. So that's really heartening to hear and this is an amazing room to be in. Thank you guys.