An Interdisciplinary Examination of Endometriosis to Combat the Male as Norm in Medicine

Abstract

The male-as-norm, the idea that male characteristics are default and neutral while anything female is aberrant and Other, is a concept that directly harms women who seek medical treatment for a variety of ailments, but especially those related to the reproductive system. This paper looks at one disease in particular, endometriosis, through the lens of six different disciplines—biology, feminist studies, history, psychology, anthropology, and communications—and discusses the benefits and pitfalls of studying the disease solely through each discipline. Because medicine alone is not sufficient to study this disease, the paper then attempts to synthesize these monodisciplinary approaches in order to present an interdisciplinary way of studying endometriosis that can hope to produce a cure and generate trust between the people suffering from the disease and medical practitioners.

Introduction

There is a disconnect between various academic disciplines regarding the differences between men and women. In sociology and gender studies, there is a clear distinction between women and men, not necessarily due to differences in anatomy, but due to the way women and men are socialized in their genders (Wharton  ). While a person’s reproductive anatomy may determine how they are socialized, it is this socialization, not their physiology, that creates differences between women and men. In biology and in medicine, the focus is on the human body, where the most obvious differences between women and men are in their reproductive organs. However, there is little discussion about physiological differences beyond the reproductive systems, despite the growing evidence that many diseases can present differently in the different sexes, and that certain medications can have different effects on women and men. This follows in a long tradition often called the male-as-norm (Spender  ), an idea that the male body is considered the default “human” body, while the female body must be studied as something else, a special case of the human body.

Medical researchers do more than neglect how diseases affecting both sexes can present differently in women and men. There is also a lack of research into diseases that affect only the female reproductive system, such as polycystic ovarian syndrome, vaginismus, and endometriosis. These conditions, the causes of which are still unknown, affect women not just physically, but also in all aspects of their lives. This oversight is therefore not just a medical problem and should not only be addressed by the medical community, but by all disciplines that explore the differences between women and men.

This paper will consider one disease in particular –– endometriosis –– as it relates to the male-as-norm concept, and as it has been and could be studied in different disciplines, namely biology, history, the social sciences and gender studies, and communications. The purpose is to show that there needs to be communication between these disciplines in order for any real change in the research of endometriosis to occur.

A quick caveat: In this paper, I will often speak generally of women and men, female and male, and will, unless otherwise stated, mean cisgender people or the binary sexes. This is, of course, a gross overgeneralization, but one that is necessary for simplicity’s sake. I say this to acknowledge that there are women— transgender, cisgender, and intersex— who do not have uteruses, just as there are men and non-binary people who do. Anyone with endometrial tissue can have endometriosis, and thus there is a potential for trans men and non-binary people to be either misgendered or left out of the issue entirely, which is not the intention of this paper. Furthermore, sections of this paper that pertain to the gendered experience of women leave out the experiences of transgender men and women, which would be an important line of inquiry for future research.

 

The Biological Perspective

Endometriosis is a disease of the female reproductive system, involving the endometrial lining of the uterus. The endometrial lining normally provides nutrients for a growing embryo, and is shed during menstruation. However, in endometriosis, this tissue grows and attaches to organs outside of the uterus, causing pelvic pain, and sometimes requiring surgery to remove (Smith 2). Endometrial tissue grows in response to signals from the hormone estrogen. In the uterus, rising levels of estrogen stimulate the normal growth of the endometrial lining before menstruation. Outside of the uterus however, this causes flare-ups of the disease in a cyclical manner, typically a few days before menstruation. For those who can get pregnant, pregnancy and its associated lack of menstruation can alleviate the symptoms, though they return after childbirth. However, 30–40% of those affected by endometriosis are infertile or subfertile, and either have difficulty with getting pregnant or with carrying the child to term (Muse and Wilso 82).

To this day, scientists do not know what causes endometriosis. One long-held belief was that it is due to menstrual blood that cannot exit the body and thus backs up into the rest of the reproductive system — a hypothesis that fails to explain several aspects of endometriosis, such as the presence of endometrial tissue outside of the reproductive system (Nezhat, Nezhat, and Nezhat 2). There are some hypotheses revolving around the presence of stem cells — nonspecific cells that can mature into specific tissues — that develop into endometrial tissue even though they are outside of the uterus (Smit 92). Other hypotheses include the transport of endometrial cells to other parts of the body through the lymphatic system, and the attachment of endometrial cells to scar tissue after a surgery such as a hysterectomy or a Cesarean section (Danielpour et al 0). There has been little consensus in the research, however, and no single hypothesis has been judged as being more likely than the rest.

There is slightly more study on why endometriosis causes the incredible amount of pain that it does. Scientists have narrowed the causes down to a class of compounds called prostaglandins (Smith 2). These compounds are secreted by the endometrial lining, and when in the uterus, induce the cramping that occurs during menstruation. When the endometrial tissue latches onto other organs, however, it secretes much higher levels of those prostaglandins, which affect the adjacent organs in the same manner. Since these organs, such as the bladder, colon, appendix, and even diaphragm, are not supposed to experience those effects, this causes the chronic pain in endometriosis. It is not until the extrauterine endometrial tissue is removed by surgery, thus removing the source of those prostaglandins, that endometriosis can be relieved, only to return some undetermined amount of time later (Smith  ).

To date, doctors have yet to find a cure for endometriosis, a way to permanently prevent the inappropriate growth of endometrial tissue, or an effective treatment outside of surgery. Hormonal birth control can work to a certain extent in some people, but not all. Much of the research on the causes of endometriosis has been published in the last decade, even though the disease itself has been known for centuries. Its symptomatology was discussed in detail in the middle of the nineteenth century and it was officially discovered microscopically — i.e. the extrauterine tissue that physicians observed as causing pelvic pain in women was identified as endometrial tissue — in 1860 (Nezhat, Nezhat, and Nezh 12). The story of endometriosis throughout time is explored later in this paper, in the Historical Perspective section.

 

The Feminist Perspective

It has been and continues to be difficult for many women to be diagnosed with endometriosis. In an online survey of more than 850 women, 37% of them reported an endometriosis diagnosis (Surry 7). Of those, 72% said they saw two or more physicians before being diagnosed, and 24% saw four or more doctors to get a diagnosis. Other studies have shown that the average delay for receiving a diagnosis in the United States is almost twelve years (Ballard, Lowton, and Wrigh 6). Often, this is because the main, and sometimes only, symptom of endometriosis is chronic pelvic pain; in fact, the delay in diagnosis was significantly longer for patients who sought treatment for pelvic pain than those who sought treatment for infertility. While infertility is easily identified as abnormal, the delay in diagnosis for women whose primary symptom is pelvic pain can be attributed to assumptions, both by physicians and patients, of what amount of pelvic pain during menstruation is “normal.” Women who had always had painful periods believed it to be normal, “considering themselves to be ‘unlucky’ rather than ill” (Ballard, Lowton, and Wright 2006, 1297). When they presented their symptoms to their doctors, they often felt as though their doctors dismissed the severity of their pain, and “many recalled being told by the family doctor that because their pains were ‘just normal period pains’ this was something they had to cope with” (1298).

Many studies have found that women who see doctors for unexplained pain are often taken less seriously than are men (Hoffman and Tarzia 8), and if the pain could be related to their reproductive systems, it is even easier for it to be dismissed. When physicians are unable to identify a clear cause for the pain, they conclude that it either has no known cause, has a mental cause, or simply that the patient is faking their symptoms (Crombez et a 09). These conclusions lead to physicians’ dismissals of women’s pain on a fairly regular basis, often giving women less pain medication than men (Hoffmann and Tarzia 01).

In 2018, only 36% of physicians in the workforce were women (Association of American Medical Colleges ). This number has increased from 15% in 1986 and 7% in 1970 (Kletke, Marder, and Silberger 0). A simple reason behind the dismissal of women’s pain, particularly in the past, could be the high proportion of male doctors, who have no reason to think of women’s bodies as being especially different from men’s bodies. This falls into the idea of male-as-norm, popularized by Dale Spender, but discussed by many feminist theorists before her. This idea of androcentrism is one that Simone de Beauvoi 11) addresses in the very beginning k, The Second Sex, saying “Humanity is male, and man defines woman… in relation to himself” (5). She goes on to say, “She is determined and differentiated in relation to man, while he is not in relation to her… He is the Subject; he is the Absolute. She is Other” (6). In fact, this androcentric idea is the base of Beauvoir’s entire book and is reflected in the title. Women are the second sex, coming second to men.

In 1990, Spender popularized the idea of male-as-norm with particular regard to our language. Mankind is a word used to discuss humanity in general, and it is far more common to see the phrase written as “men and women,” as opposed to “women and men;” the latter is the order I have made a conscious effort to maintain in this paper. Although Spender focused on the linguistic implications of male-as-norm, the concept goes beyond language, and is a phenomenon that can be seen in many, if not all, disciplines.

When it comes to male-as-norm in medicine, the bias is clear. Men, usually white, have historically been overrepresented in medical research and drug trials and some medical conditions, such as AIDS and heart attacks, go unrecognized in women because the symptoms are different in women and men (Dresse 2). This is not the only case of the male body’s being considered the standard, default human body. The temperature of office buildings is calculated using a formula created in the 1960s, which used the average metabolic rate of men, and which researchers estimate results in a temperature that is, on average, uncomfortably low for women (Kingma and van Marken Lichtenbe 5). When cars and seat belts are tested for safety, most of the tests only require the use of a representative male crash dummy (Criado-Perez 9). Only one of the five crash tests requires the use of a female dummy, but that dummy is little more than a scaled down male dummy, and it is only placed in the passenger seat. The order in which we list women and men is therefore a symptom of a mindset that pervades more areas than just linguistics. This androcentric mindset reduces women’s access to competent medical care and is something that has yet to be fully addressed in medical science.

A search on Google Images for “musculoskeletal system” shows that the first dozen or so images are all of male bodies, most with the captions describing the “human” muscular system (see the Appendix, Figure 1). If one scrolls down until an image of the female body appears, its caption will read, “Female muscular system” (Appendix, Figure 2). Researchers have been studying the disparity between the depictions of female and male bodies in medical textbooks for decades. A study performed in 1986 on required textbooks for major Western medical schools found identifiably male bodies to be depicted in 64% of the illustrations of non-gender specific sections. Only 11% of the bodies were identifiably female, while 25% were either gender-neutral or contained equal representations of female and male bodies (Giacomini, Rozee-Koker, and Pepitone-Arreola-Rockwe 6). Textbook authors made a concerted effort throughout the 1990s to minimize the disparity (Mendelsohn et a 94). However, a more recent study performed in 2015 found that identifiably male bodies were still depicted almost 17% more often than identifiably female bodies (Murciano-Goro 15). This disparity may not directly lead to the issues that the male-as-norm in medicine causes, but it is a further example of this androcentric mindset.

A feminist approach to endometriosis is necessary for more than just exposing the male-as-norm and the mistreatment of women in medicine. This is precisely because it also exposes the mistreatment of men — transgender men to be specific. This paper generalizes about the gender of the people experiencing endometriosis, but the condition affects transgender men at the same frequency as it does cisgende en. Beyond that, there are also intersex people — people whose reproductive or sexual anatomy does not fit typical definitions of female or male — who need to be taken into account. Since endometriosis is simply the growth of endometrial tissue, it can appear in anyone with a uterus or endometrial tissue, regardless of their gender identity. A more nuanced approach to gender in medical research would be needed to address how endometriosis affects anyone outside of cisgender women.

 

The Historical Perspective

Tracing any specific disease throughout history is difficult. Physicians have called different symptoms by different names, and blamed diseases on various things, like demons and imbalances of humors (Nezhat, Nezhat, and Nezha 2). For a disease like endometriosis, which can really only be confirmed with physical evidence, and which presents rather nonspecific symptoms in patients who are not taken seriously, following its path through history is even more difficult. As pp puts it, “To ask that European physicians, struggling to identify endometriosis in the late 17th and 18th centuries, come up with tissue samples to distinguish the disease would be to write the present back into the past” (1999, 13). Without the physical evidence of a disease, no one today can definitively prove that physicians in the 17th and 18th centuries were examining patients with endometriosis. Historians are then hesitant to conclusively label anything as endometriosis. Despite this, endometriosis presents enough symptoms together that its history can be discovered to a certain extent.

In 2011, Camran Nezhat, Farr Nezhat, and Ceana Nezhat published an extensive study on the research and writings on endometriosis throughout written history. While endometriosis was only discovered microscopically in 1860, Nezhat, Nezhat, and Nezhat searched through medical history archives and even had medical texts translated from Latin. Since endometriosis was only described and named in recent history, they could not be completely certain that the historical records they found actually detailed endometriosis, but they only included research that fit the accepted descriptions and symptoms of endometriosis.

Nezhat, Nezhat, and Nezhat’s research found that there has been medical knowledge of this condition since ancient times. There are mentions of uterine ulcers in the Hippocratic corpus, as well as suggested treatments, which involved either using suppositori  of or ingesting different types of urine, pomegranate, or tar water. The idea of uterine strangulation or suffocation has been a common theme throughout history (Nezhat, Nezhat, and Nezhat  ). A form of it still persists in one hypothesis of the cause of endometriosis — namely, that menstrual blood cannot properly exit the body and backs up into the Fallopian tubes, where the endometrial tissue develops into endometriosis. As previously mentioned, this idea does little to explain the presence of endometriosis outside of the reproductive system altogether, being found in the diaphragm and lungs in some instances.

Eventually, it was the increasing interest and success in surgery in the nineteenth century that ultimately led to the discovery of endometriosis as we know it today. In order to become successful surgeons, medical students had to use cadavers to learn more about the internal anatomy of the body. Once it became commonplace to perform dissections, doctors became obsessed with finding internal evidence of diseases, learning more about the various tissues along the way (Nezhat, Nezhat, and Nezha 2). This led scientists to find macroscopic evidence for the first time of what Nezhat, Nezhat, and Nezhat believe was indeed endometriosis — lesions found on abdominal organs in women who had also experienced menstruation-related disorders. Two years after the discovery of macroscopic evidence of the disease, Austrian pathologist Karl van Rokitansky examined these lesions under a microscope and identified them as endometrial tissue (Nezhat, Nezhat, and Nezhat  ).

However, both before and after the official discovery of endometriosis, women continued to be treated for “hysteria” (Nezhat, Nezhat, and Nezhat 2012, 15). For some women, this hysteria was documented to occur only in the few days leading up to menstruation before disappearing, a fact that Nezhat, Nezhat, and Nezhat note did not prevent their families from leaving them in asylums. While hysteria in women was discussed in Ancient Greek writings, it grew in significance in the early modern era. In the 17th and 18th centuries, the symptoms of endometriosis were blamed on a variety of supernatural causes, from demonic possession to witchcraft (Nezhat, Nezhat, and Nezh 12). Nezhat, Nezhat, and Nezhat call this period a step backward for women’s health because “disorders viewed as gynecologic for thousands of years were now being defined as psychological in nature” (17).

The history of endometriosis, while long, complicated, and difficult to trace, is closely tied not only to the biological, but also to the psychological. This is unsurprising, considering that women today continue to have a difficult time getting diagnosed for chronic pain conditions because male doctors think their pain is all in their heads. The stains of women’s “hysterical” past continue to affect how women receive medical treatment today.

 

The Psychological Perspective

Scholars through the ages have expounded on the differences between women and men, but psychologists have taken a special interest in this matter.  In 1962, Sigmund Freud discussed in depth the differences in sexual anatomy. He blamed many psychological problems in women on these differences, and often on women’s refusal to accept these differences. Furthermore, as previously mentioned, Nezhat, Nezhat, and Nezhat’s work discovered that many of the cases of hysteria that physicians and psychologists described fit the symptoms of endometriosis — i.e. the bouts of hysteria — were cyclical and tied to the women’s menstrual cycles, heavy bleeding, and stomach pains that led to fainting spells (2012, 21). For so much of its history, endometriosis has been just as much a psychological condition as a physical one.

Today, having moved on from committing women to asylums for “hysteria,” endometriosis continues to be a mental health issue. One study in which researchers spoke to women diagnosed with endometriosis found that, as with any illness causing chronic pain, the women’s quality of life was drastically impacted by the condition (Grogan, Turley, and Cole  ). Moreover, since many of the women in the study felt as though they were not taken seriously by their doctors and struggled to obtain an accurate diagnosis, the impact on their mental health was even greater. Beyond the fight to be taken seriously, the women all reported a distancing from friends and family as a result of their illness. They either hid their symptoms due to a lack of understanding from those around them, or they avoided social outings because of their fatigue from the pain. This study stressed the importance of an early diagnosis, as well as a strong support network in order to prevent mental health issues beyond the endometriosis.

Another study examined the effects that different symptoms of endometriosis have on women’s quality of life (Facchin et al. 2015). The effects on women’s mental health and quality of life in the study depended on whether women experience pain during intercourse (dyspareunia), with bowel movements (dyschezia), during menstruation (dysmenorrhea), or outside of menstruation. While menstrual pain was found to affect women’s physical quality of life, non-menstrual pelvic pain was found to affect women’s physical and mental quality of life, and also resulted in increased rates of anxiety an on. Menstrual pain was found to affect fewer aspects of quality of life because of its transitory nature, as opposed to non-menstrual pelvic pain, which could be more frequent. The researchers behind this study did not find dyspareunia or dyschezia to have significant effects on quality of life, but other studies, focused primarily on dyspareunia, have found links between dyspareunia and a reduced quality of life, both mentally and sexually (De Graaff et al 6).

Not only does endometriosis affect a woman’s mental health, but the anxiety and depression that can stem from endometriosis can also exacerbate the symptoms, especially dyspareunia. Sexuality has been shown to have a psychosocial dimension (Barlo 86), that is, a person’s mental health can have a big impact on how they experience sex. This is especially true in people suffering from pain during intercourse (Fritzer et a 13). The anxiety about potentially being in pain can ultimately make the pain worse. Surgery as a treatment for endometriosis has been found to improve dyspareunia but takes longer to have a significant effect than surgery in people with menstrual pain because of the psychosocial aspect of sexuality (De Graff et al. 6).

Fritzer et al. have found that dyspareunia can impact women’s relationships with sexual partners, as well. Their 2013 study found that women who suffer from dyspareunia have more feelings of guilt toward their partners and fewer feelings of femininity because of their  n. Nearly a third of the women surveyed agreed that they felt as though they were bad wives because of the pain, and those who reported feelings of guilt elaborated, saying they felt that they could not “fulfill the role model of a ‘real’ woman” or “give the partner what he wants and deserves” (394). Because of the pressure of societal expectations on women regarding their sex lives and procreative abilities (discussed more in the following section), the mental health of people with endometriosi rs.

 

The Anthropological Perspective

Anthropology often focuses on the reproductive capabilities of women and how these affect women’s role in society. Throughout history, many, if not most, societies have considered the onset of menstruation as the moment when a girl becomes a woman (Montgomery ). The sudden ability to create new life, even when a girl is too young to care for it properly, is held up as one of her most important milestones; her ability to preserve the species becomes the most celebrated part about her (Montgomer 74). It is not surprising, then, that more research funding is allocated toward infertility than endometriosis or other disorders of the female reproductive system that cause chronic pain.

In 2019, $13 million of the National Institutes of Health’s research budget was allocated for endometriosis research, admittedly almost double the amount in 2018, when endometriosis research received $7 million (NIH 2020). Research on infertility, however, received $151 million in 2019. When scientific research funding is allocated, the researcher submits a grant proposal, which is reviewed by a committee and evaluated based on a set of chosen priorities that depends on the agency or program allocating the funds. Furthermore, research funding is increasingly given to projects with actionable results that are somewhat predetermined, rather than research that is more curiosity-driven — i.e. the results of which are not at all known before the research is conducted (Szasz 5). Thus, much of the research on endometriosis examines the link between endometriosis and infertility, as it is assumed that a concrete problem like infertility can have a more concrete solution than the chronic pain that endometriosis can cause.

In 2010, Lenore Manderson performed a study on how infertility due to endometriosis affects women emotionally and socially instead of how endometriosis causes infertility. She describes cases of Australian women who received diagnoses of diseases such as polycystic ovarian syndrome (PCOS) or endometriosis. These diagnoses can be difficult for women to process, for the same reasons discussed above in the treatment of women by male doctors. In addition to the struggle they went through to receive a diagnosis, the women Manderson spoke to were all infertile as a result of their condition. She also explores these women’s relationships to their own femininity as a result of their infertility. Many of the women in the study said they felt like “half of a woman,” or “less of a woman” because of their condition (97). Because society places so much value on a woman’s ability to have children, women who are infertile are negatively affected, and their mental health suffers.

Much of Western culture in a general sense can be categorized as pronatalist, which Anna Gotlib describes as the “endorsement of woman-as-mother” (2016, 330). This appears in instances of couples saying that they are starting a family when they are trying to conceive, as if they themselves do not constitute a family. It can be seen in the assumption that all women want to have children. Viewed  from a national standpoint, there are even income tax deductions for families with children (Whiteford and Gonzale 5). With motherhood being considered a natural part of womanhood and femininity, and often considered the “natural outcome of adulthood and marriage” (Baker 2005, 524), women who are unable to bear their own children feel as though they have failed as women (Manderson 2010; Whiteford and Gonzalez 1995).

Despite the value that many cultures have given to menstruation, many cultures also place a stigma on discussing matters related to the female reproductive system, including any problems that are related to these topics, like endometriosis (Johnston-Robledo and Chrisler  ). In their study on this stigma associated with menstruation, Johnston-Robledo and Chrisler discuss how in some cultures, menstruating women are considered “unclean” and are excluded from certain activities. In other cases, they say women are simply taught that menstruation is something that is not discussed in public. On the way to a restroom with a pad or tampon, a woman may tuck it in her sleeve or ask for one in a hushed voice. While there are women who work to reduce the stigma — Johnston-Robledo and Chrisler reference artists who use their own menstrual blood as paint in order to make viewers confront their personal stigmas — it is still true that many feminine hygiene commercials use a “conceptually sterile” blue liquid that “cannot conjure the image of any bodily fluid” to represent menstrual blood (Ryus  ).

 

The Communications Perspective

A peculiar approach to solving the lack of research into diseases like endometriosis is through social media. Through campaigns like the #1in10 campaign, created by the Endometriosis Coalition (Kronfeld 8), people affected by endometriosis have sought to raise awareness of the disease, both to educate others who may have the disease but remain unaware and to pressure doctors and medical researchers to find a cause and a cure. Outside of the #1in10 campaign, people with endometriosis have taken to social media to share their stories that shed light on this invisible illness that affects at least 10% of women, starting support groups on Facebook, and discussing their experiences using the tag #thisisendometriosis. Lara E. Parker, a producer at Buzzfeed, is one such woman who is open about her life with endometriosis pain. She often documents her experiences on Instagram, where she has 49,000 followers, and her Twitter, where she has 25,000. Her popularity as a Buzzfeed producer and now on social media allows her to increase awareness of endometriosis on a daily basis and not just for a limited time as with other awareness campaigns.

The effectiveness of these campaigns and social media posts has not been studied, but other awareness campaigns have had measurable effects. Studies on mental health awareness campaigns found that such campaigns can have significantly positive effects. One study, conducted as an awareness campaign in Nagoya, Japan aimed to reduce suicides. It found that the number of suicides in the target audience in the area did, in fact, decrease with increased proliferation of the campaign (Matsubayashi, Ueda, and Sawad 14). Another study, examining an awareness campaign in British Columbia, Canada, found that it succeeded in increasing awareness of mental illness and mental health literacy, but that the campaign ultimately had little success in improving attitudes and lessening the stigma associated with mental illness (Livingston et al 3).

While social media campaigns may be effective in generating awareness, some say that increased awareness is not enough as it pertains to women’s health. A study of the messages found on websites dedicated to endometriosis found little information specifically related to doctor-patient communication (Anderson 8). While gaining knowledge of a disease is empowering to a certain degree, Anderson argues that lacking the ability to effectively communicate about the disease with a physician is ultimately detrimental. This is particularly the case with endometriosis, when patients are often dismissed as exaggerating their pain or making it up. If the physician dismisses their symptoms, and the patients do not know how to effectively communicate, Anderson says that the patients are more likely to believe that the doctor has more authority. They will then leave the appointment without properly addressing the endometriosis, which leads to an increased time until diagnosis.

Noemie Elhadad, a professor at Columbia University, uses technology not simply to generate awareness, but also to crowdsource endometriosis research (Big 19). She has developed an app called Phendo, which allows users with endometriosis to enter their symptoms, as well as their medications, their mental health, and other factors that could affect their condition. Because endometriosis can present differently in different people, the thousands of inputs into this app help researchers determine why it is that certain treatments work on certain cases and not others. The collective data also helps to develop a phenotype — i.e., a standard set of physical characteristics — and subsets of that phenotype. This knowledge could lead to a faster diagnosis of endometriosis for patients and more effective treatments.

 

An Interdisciplinary Approach

No one discipline that touches on endometriosis is sufficient to address all the issues associated with the disease. Scholars of a single discipline often admit that their field lacks knowledge about endometriosis. Vincent Knapp says, “This often cryptic disease… is virtually unknown to historians even in the highly specialized area of the history of medicine” (1999, 10), while Manderson argues that diseases of the reproductive system like endometriosis “have aroused limited interest among medical and psychological researchers, virtually none among anthropologists” (2010, 96). This general lack of research, as well as the bias in medical research surrounding the treatment of women, have certainly slowed down the potential discovery of the cause of endometriosis.

What, then, can be done about this disparity in research in all fields? The solution may be an interdisciplinary approach to medical science that does not solely look at biology but takes sociology and anthropology into account, as well as communications studies. Admittedly, this is not achieved without difficulty. Guerrero et al. (2017) examined problems and solutions related to the implementation of interdisciplinarity in research. Common problems working in an interdisciplinary — and collaborative — environment that they identified included role confusion, power hierarchies, and a focus on specialty knowledge and journals. For role confusion and power hierarchies, Guerrero et al. recommended clear and positive communication between team members about the goals and leadership of the project. As for the problem that team members may be stuck in a specialized mindset, the authors recommended emphasizing interdisciplinary research and collaboration early in graduate education.

Progress has been made in the inclusion of sociology in medical science. In 2015, the MCAT, a required exam for those who are applying to medical school, included a section on social and behavioral sciences (“MCAT and Sociology 4). The promise of a change in the MCAT prompted pre-med programs to include one or two introductory sociology or psychology classes in their lists of required courses (Rosentha 2 es, medical schools are now more open to applicants with diverse educational backgrounds, as long as they also have the science coursework (Murph 9). The inclusion of students from many fields of study can only improve the field of medical research by bringing a variety of backgrounds and approaches to problems and preparing students early for the potential for interdisciplinary collaboration, just as Guerrero et al. recommend.

In 2005, Russell Sawa wrote about cases — some successful and others not — where he collaborated in interdisciplinary research as a physician. In one case, he and others from many different disciplines prepared papers for a symposium while holding regular phone conferences during the three years leading up to the symposium. Each of their papers was well-received at the symposium and Sawa credits the success of this case to the trust he and his colleagues built over time and the deep level at which they shared with each other. Other cases ended with an imbalance of power or a disagreement of basic philosophies. Sawa observed several of his colleagues hold firmly to the belief that empirical methods were superior to all others. Because of this, Sawa calls for more dialogue and understanding between physicians and the nursing profession, which he says embraces “holistic theories of health care” (55). He further recommends that medicine shift toward a more patient-centered approach, where physicians “get rid of preconceptions and judgments” (59), admitting that this would be difficult to achieve but stating that it is ultimately essential.

While interdisciplinary medical research is not necessarily commonplace, that is not to say that it does not happen. Nancy Krieger and Elizabeth Fee (1996) explored the intersections of race and sex in medical science and concluded that it is impossible to generalize any medical condition based on sex or race because the variation is too great. For example, they found the risk for hypertension to be so varied between men and women of different races and ethnicities that women from one country have higher risks than men from another, even though the risk for hypertension in women is generally lower than  en. Observing the rates of certain forms of cancer reveals that women of lower social classes have higher rates of cervical cancer, while women of higher social classes have higher rates of breast cancer (Krieger and Fee 6). All of these conclusions point to the idea that human bodies do not exist in a vacuum. We are all influenced by our environment, literally, by chemical and radiation exposure, but also sociologically, by issues such as financial stress and racism. Medical research into the causes and presentations of diseases must not only look into the physiology, but also the social factors.

When considering endometriosis in particular, it is important to take all social factors into account. One study found higher rates of endometriosis and endometriosis-related infertility in people of a higher social class (Matorras et al 5). However, considering how difficult it is for women to be diagnosed with endometriosis, it is much more likely that this statistic comes from the women who are able to see a doctor about health issues and who continue to pursue a diagnosis when they fail to get one, something women of a lower social class are not always able to do.

In order to combat the male-as-norm in biology classes and medical school, textbook authors and editors need to be diligent in depicting female bodies as much as they do male bodies. However, while anatomy textbooks are still unbalanced in their depiction of female and male bodies, social media can step in. At a time when discussing issues related to the female reproductive system is still discouraged, people may not always be comfortable discussing them in person. However, a precipitating event has the potential to push someone over the edge, so to speak, and people will take to social media to vent their frustrations (Betton et al. ). This leads to awareness campaigns like #1in10, where people can learn about an illness like endometriosis without being subjected to the stigma attached to talking about menstrual problems. People on social media, like Lara Parker, then, can provide that knowledge until the more traditional modes of learning, i.e. textbooks, can catch up.

Social media has the potential to let the voices of women who have endometriosis be heard by everyone. Something as simple as listening to the patients themselves can do wonders, and yet even physicians who are sympathetic to the bias against women in medical research can come to conclusions without hearing the opinions of those women. John Smith is a male gynecologist who wrote a book in 1992 detailing the mistreatment of women with regards to reproductive health. It is, generally, very necessary for a male doctor to call out his colleagues when they do not take a woman seriously, but even Smith makes assumptions without actually speaking to patients. One of his examples of the “mistreatment” of women is that 90% of the hysterectomies performed in 1991 were elective procedures and, in his opinion, half of those were unjustified. It is almost as if the idea that these women had their own reasons to choose, of their own accord, to have hysterectomies even when it was not medically necessary — i.e. choosing to have hysterectomies to eliminate pelvic pain or heavy bleeding, instead of requiring them to treat cancer — never occurred to him at all. If this male doctor had spoken to any of those patients himself, he may have changed his opinion.

 

Conclusion

There is no single field that encompasses all aspects of endometriosis. Many disciplines have their own perspectives on the disease, and each addresses only a fragment of its causes or consequences. To properly consider all aspects of endometriosis will require communication between physicians and psychologists, as well as feminist theorists, historians, anthropologists, and communications specialists. This is especially true for the effects of endometriosis in subpopulations such as transgender and intersex people. Furthermore there are still plenty of medical issues surrounding the female reproductive system, such as polycystic ovary syndrome and vaginismus, that would benefit from the same interdisciplinary approach as the one discussed here for endometriosis.

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Musculoskeletal Diagrams of Women and Men

Figure 1: One of the many diagrams of the male musculoskeletal system that is labeled as “human”

 

Figure 2: Musculoskeletal diagram that specifies it is a female body, complete with bizarrely sexy pose

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