Patient Awareness Day 2018: Abby Norman

Patient Awareness Day 2018: Abby Norman

PATIENT AWARENESS DAY 2018: 
LIVING YOUR BEST LIFE WITH ENDO

Sunday, March 18, 2018, (8am-5pm) Einhorn Auditorium (131 E76th st)  at Lenox Hill Hospital, NYC

A “Hystery” of Endometriosis through Review of Historical Medical Literature

Abby Norman

 

My name is Abby Norman and I'm a science writer and also I have endometriosis. And probably like a lot of you in this room today, I am on a lot of medication and I am in a little bit of pain. So if you will stick with me, I am going to actually work on my notes. Looks like it's a lot, but it's not as long as it looks, I swear. It's just in a really big font.

So as it is my nature to be fascinated and somewhat horrified by the often frustrating realities of my body, in researching my book, I became very interested in how diseases of the reproductive system have been characterized throughout history.

While there is not an enormous body of historical literature as there is not even necessarily one of contemporary literature on the subject of endometriosis and its progenitors, I still manage to amass more than I could include in a single book. So I'm actually really excited to get to show a little bit of that to you today. Endometriosis has been a distinct clinical entity for longer than you may have realized. Though, we may not have always known it by that name. Syndromes that refer to menstrual dysfunction date back to the fifth century B.C. as far as being represented in Hippocratic medical texts. Even the most ancient description of these diseases will sound kind of familiar to us. Although, the ancient texts gave a more literary interpretation. And it's often repeated that the uterus was long characterized as being somewhat animalistic in nature, wandering about the body, and wreaking havoc.

This characterization persisted relatively unchanged for a remarkably long time. Whether a woman was possessed by a wandering womb, or witchcraft, or bits of hysteria, a diseased reproductive system was mysterious, but not all together uncommonly encountered phenomenon. Particularly because there was something of a medical fascination around abnormal menstruation, for which the woman was often blamed. But no less, investigations were undertaken to suss out why and what for her periods had become corrupt or her uterus melancholy. Conditions like corporeal heteroplasia in chronic endometritis, while concerned primarily with a uterus, though often recognized to affect any grand women in the female prowess, would've had a very similar presentation to endo. It while adequate treatment may still even today, seemed Luda many attempts were made throughout history to find something to ease the pain. I was waiting to say, treacherous, though they may have been because I was going to show you the slide on which these treacherous devices appeared.

We will just take a little break from these surrealists. Ah, yes. Here we are. As you can see, treacherous. What's more though is that these women were as resigned to their suffering then as many of us are today. Whether it was called an irritable uterus or amenable habit for better. Habitable. The origin story of endometriosis is an ancient one, but actually, I am concerned with more contemporary literature that might've influenced our common understanding of it today. Not to say that all of these ancient texts aren't of value because they are and they have formed the foundation for our understanding. Though, in truth, they are not gonna be the first to exposure to the word endometriosis, that many physicians and patients of the modern age have had. And I am sure that the vast majority of you are familiar with the some of the forebodings of endometriosis, such as Sachs and Doctor Schanskry mentioned. It also Rokitansky. Both of them who did make the groundwork for our contemporary understanding and in some respects, misunderstanding about the disease. But, I wanted to actually point towards some sources which I think are more obscure. This is an important characteristic in the same reason that your local physician's experience and understanding of endometriosis may not have come as the result of having access to a particular kind of education or a more specialized perspective. And this is also true for our modern interpretation, in the broader cultural sense. Whether we're in the medical profession or not, whether we have access to medical literature or not, our understanding of the particular disease or condition, the nuance of it, the experience of it, how it's characterized, is always influenced by it's broader sociocultural representation. Now for most of us, what we know or believe or understand something like saying, cancer, doesn't necessarily come from the New England Journal of Medicine directly. It probably doesn't even come from a particular study. It comes from our own experience with it, or a family remembers, or a friend. It comes from how scientific, scientific information is interpreted by a reporter or a writer like me, who then writes up some article with a headline that grabs your attention. It might also come to us as distilled by a discussion with our doctor or healthcare provider. But actually, we are more than likely to be told things about a disease from an episode of Grey's Anatomy. And in that case, it's fiction, rather than non-fiction. And as the author of the nonfiction book I've been telling that certainly it's not necessarily the hard, new science stuff but it's the biggest audience. But when you think about where it's most likely somebody will hear a word like endometriosis for the first time, and I mean really hear it and see it, where it's going to stand out a much, in a much plainer language.

Endometriosis is a word that would get lost in deeper medical jargon. I imagine showing to someone with a trained eye, it probably wouldn't mean much in particular to somebody without that training. Except to say if it's in a column like this. Featured in one of the longest women's magazines in the English language, the Ladies' Home Journal. Which was first published in 1883, it was for most of our mothers and grandmothers, the go-to in-home source book for everything from fashion to health to childbearing. And similar periodicals like McCall's and Redbook and People would follow in a similar tradition, where such women's magazines had their heyday, pre-internet. It's through the '50s, '60s, '70s and '80s. Even in the presence of online resources, the circulation of such magazines is as broad as it is wide, in terms of its audience. Even if it's in the forms of a column like this. With a medical professional, not even a picture, it's definitely not a cover story. A word like endometriosis would stand out. But even then, most of us, even those with experience with medical jargon and an eye for science, probably would not say that we read these periodicals specifically for health information. Tips on how to get deodorant out of a blouse, yeah, recipes, probably. But many readers of these magazines would either only read part of such a column or skip it entirely. Especially if it was opposite an interview with a celebrity, or an advertisement or something like a face cream. And so for the next place that we might look, would be actual literature, movies and books. In many of the greatest works of fiction in the last century, a disease or illness has become something of a character in of itself. And this is especially true in movies about plagues. But in terms of practical narrative, especially with women, it's more likely that a disease will be a trope, or a plot device. And those they come from the retractive system we've had for millennia of storytelling, lend themselves to deeper meaning, to help relate the symbolism. And this informs our broader, cultural perception, as do all these other avenues we're discussing. By interviewing its appearance in literature, it might surprise you to know that where it is most often found is not so much a literary symbol or allegory, but rather as a plot device. So consider the romance novel, specifically the heart of the Harlequin romance novel, which are as ubiquitous as they are somewhat formulaic. But they are everywhere. They are in every grocery store and airport, every library, every bookstore, hotel rooms, lobbies. And I am a personal belief that we all have at least one Harlequin romance novel in our house, we probably don't even know how it got there. I find that night table drawers, attics are very common places for them to appear. Within the genre, my heroine must be rendered infertile to serve the plot. Endometriosis has apparently become the de facto device. The name itself is dramatic, it's somewhat opaque to the reader, especially if they're not well versed in medical terminology, which then makes it feel more like a proper medical mystery. The disease doesn't necessarily have to end with the heroine's demise, but it might facilitate some surgeries that provide a climactic scene. And it can be the most important driving force behind its stereotypical appearances. Which as we know, that being led to infertility is not necessarily true. And so therefore, the catastrophic degree to which harlequin novels and a lot of articles that I read online nowadays, would have us read. It actually, perhaps the most heavy-handed use of this trope appears in "Penny Parker's Pregnant!" I also enjoyed the part where the doctor says that he was able to see it from the ultrasound, which I've never had a doctor be able to see endometriosis on an ultrasound. Also it's only fatal in very rare cases, which is very reassuring. It also, you'll see the way its characterized, in terms of discussions with partners, and the conversation that happens in this chapter, the spouse says "This doesn't explain anything to me. I don't know anything about a woman's health problems." and of course, the myth that pregnancy will cure endometriosis, is very, very very repeated throughout these texts. I actually just shared two of the volumes of Harlequin novels in which this trope appears, but there are far more than I could have time to include. But the thing is is that all of these attitudes, as well as being rooted in where the focus has long been on women's health. Preserving and restoring fertility above all else, irrespective of other symptoms, which many patients actually find to be more debilitating. In to that point, in fact, where the infertility association threatened to, in my experience, may not necessarily be from the destruction of anatomy, but from its being prohibitive to the vaginal intercourse that would facilitate conception. And not to mention, the enjoyment of it. Which if my high school experience is with those romance novels serves me, was kind of the primary point of the stories. So in the spirit of challenging the representations that are rooted in antiquated beliefs, cultural bias and misinformation used as a literary trope.

I'd like to leave you with the quote from Clinical Lectures on the diseases of women, which was delivered in St. Bartholomew's hospital, by one J. Matthews Duncan in 1882, where he discusses a condition in which may well have been the progenitor of endometriosis, but if not even his larger message is what's most important. And I had a slide for it, before this slide. I wonder if I missed it. I did. But it's alright. I'll just read it to you. Because I have the notes. "It was unknown when I was a student, I studied medicine in Agradine and Paris, and in none of these places did I hear of such a disease. It is now the most difficult to conceive how this most manifest disease could have passed unnoticed. If you consider a gold field, with first-rate nuggets are discovered, and then small ones, and then to find all of the sand has to be sifted and lastly, there is not at all. So in anatomy and pathology, great discovery is where at one time, easily made. But now we have to have a microscope with a lens of the highest power to find anything new. When I was a student, we had only morbid anatomy, and now we hear of nothing but pathological discovery, with regard to uterine capacity. Here was a nugget of the largest size, which will remain practically undiscovered until a few years ago. This is a remarkable subject for reflection, and shows us how carefully we should scrutinize our cases, for there may be some claimed nuggets buried in the field of medicine, even now. When we think of the time for such discoveries, is passed." Thank you.