Our Current Medical Reality

Most of the time I don’t get the information I need to treat patients successfully by looking at their medical charts. I get it by talking with them.
For example, if not for our conversation, I wouldn’t have known that Rosita, who came in for chronic abdominal and pelvic pain, had been suffering her whole life with excruciatingly painful periods. When she’d consulted her general practitioner several years before, she had assumed the cause was “PMS,” or premenstrual syndrome; her doctor had therefore suggested that she go home, take some ibuprofen, and rest with a heating pad. However, the pain increased with every period. Soon Rosita was missing whole days of work, driving to urgent care centers in search of pain relief, and praying for answers. But each time, the response was the same: “We aren’t sure what’s going on, so go home, rest, and follow up with your primary care doctor tomorrow.” And each time, Rosita complied, though her intuition was screaming that something was wrong.
This particular month, she was bleeding even more heavily than usual and in so much pain she could barely walk. Desperate, she came into the emergency department. After our conversation, I sent her for an ultrasound.
As it turns out, Rosita’s ultrasound had all the hallmarks of endometriosis. I recommended she follow up with a colleague of mine who specializes in that condition. Exploratory surgery confirmed the diagnosis; eventually, it was determined that Rosita needed a full hysterectomy.

I couldn’t deduce this simply by looking at Rosita’s chart because there was little relevant information to be found there. Our male-centric medical system doesn’t address any of the subtleties of women’s issues. We have blanket terms for women’s symptoms (like PMS), but we don’t have a women’s symptoms (like PMS), but we don’t have a system for delving into those issues in a way that can consistently result in accurate diagnoses. In fact, it takes an average of seven years for a woman to obtain a diagnosis of endometriosis.2
While it may appear, from an outside perspective, that medicine is systemized to the last detail, this actually isn’t true. Despite our incredible technologies and modern advances, much of diagnosis and treatment is still highly subjective—based on educated guesswork, theories, pattern recognition, and the occasional plain old-fashioned hunch—especially when it comes to women’s health. In the ED, we often joke that “patients don’t read the textbooks”—meaning that they rarely present in accordance with the classic teachings of how diseases manifest.
Doctors spend four years in medical school and three to six years in residency learning to put our vast body of knowledge into practice, and yet we still get caught off guard. We all have at least one story about someone who came into the ED with a sore throat and ended up needing surgery for appendicitis, or something else equally odd.
This indicates not that our textbooks have outlived their usefulness but rather that they are based upon historical averages that no longer fully apply. Most of the data used in medical education was compiled prior to the 1990s and reflects an era when patients waited to consult their doctors until something was “really wrong”—meaning, their disease had progressed significantly and had become more obvious with respect to diagnosis. Now, people tend to be more aware of their symptoms and to seek care for subtler issues; this is wonderful because it means that many potentially deadly diseases are caught in their early stages, but it also complicates diagnoses because, early in the disease process, the same symptoms can indicate multiple potential issues. For example, whereas people used to come into the ED with full-blown chicken pox (which was easy to diagnose), now they are coming in with a tiny red patch on the arm, which could be the first sign of chicken pox or anything from poison ivy to an allergic reaction. When we try to apply our textbook diagnostic training to unclear symptoms or early-stage disease, uncertainty ensues.

Things get even more convoluted when you factor in the many differences between men’s and women’s bodies. We can no longer ignore the evidence that a woman’s every organ and system, from her brain to her bones, from her metabolism to her arteries and veins, is physiologically unique—and that, as such, she must be offered different and appropriate diagnoses, treatments, and preventive care. However, I and my contemporaries didn’t even have textbooks for this kind of thing in med school. At least, not until the textbook, Sex and Gender in Acute Care Medicine, for which I was the lead editor, was published. Everything we learned in school was based on the male-centric model, and every procedure we learned was based on male-centric care. Most anatomy books use only male models, providing disembodied breasts and pelvises when female “parts” are discussed. Mannequins used for simulations in academic settings are male; usually, the only available female model is a pregnant one. Even our electronic medical records use photos of male models. In the ED, we literally have to use pictures of men while we attempt to illustrate female patterns of pain and disease to women!
Different groups of women are also at higher risk in our healthcare system because of lack of research. For example, many drug trials and research studies do not include elderly patients because such patients tend to take too many other prescriptions, which can confound study results, or because diseases like dementia and stroke prevent the patient from giving informed consent. However, since this is the population that will most likely be using the drugs and protocols being researched in these trials, we are left with a huge margin of error.
Women of color are also overlooked in research despite their unique risk factors and so continue to suffer unacceptable outcomes across the board.3 We’ll talk about this unacceptable disparity in greater detail in Chapter 8, but for the purposes of this discussion, it’s vital to note that, in 2017, the Center for Drug Evaluation and Research approved over forty-five new drugs, which had been studied in over 60,000 participants. Only 7 percent of those participants (of both genders) were black or African American, and only 14 percent were Hispanic. A 2016 article in The Atlantic noted, “Since 1993, fewer than 5 percent of respiratory studies funded by the National Institute of Health have included reports on racial or ethnic minorities… and fewer than 2 percent funded by the National Cancer Institute have met diversity goals.

And, as noted, pregnant women are ignored by research trials completely; in fact, they are often referred to as “therapeutic orphans.” Of course, no one wants to create another horrible situation like what we saw with thalidomide—and, thankfully, our current knowledge and protocols would never allow that to happen. But neither is it acceptable that only eight medications are currently approved by the FDA for use during pregnancy, all of them for conditions related to the pregnancy itself (nausea, labor complications, and pain). Pregnant women get sick, and sick women get pregnant—but because of our reluctance to study pregnant women, the drugs they take for their conditions come with an unknown set of risks. Women are then left to choose between treating their own serious or even life-threatening condition and protecting their infant’s health. This not only is unacceptable in human terms but also puts women at risk for the very same unforeseen complications we have been trying to avoid. Even Tylenol, which is considered the only “safe” pain reliever to use during pregnancy and nursing, has not been evaluated in controlled studies with pregnant women. The only difference is that, because most medications have not been studied, the risks (and blame) for adverse effects fall on the women themselves, who often have no idea that the medicines they are taking for their asthma, hypertension, depression, anxiety, or seizures could pose a risk to their babies.
The fact is that, despite all the scientific advances we’ve made in the last forty years, women still experience poorer outcomes in all areas of health, and women of color experience worse outcomes than white women. Women in general are less likely than men to be treated for lots of things—for sepsis, for myocardial infarction, for stroke, for arrhythmia. Women also struggle to receive appropriate diagnoses and treatment for women-specific diseases like endometriosis and for chronic pain conditions like fibromyalgia. And women are less likely to be treated appropriately for that great equalizer: pain.

THE LACK OF WIDELY AVAILABLE INFORMATION and education is frustrating for physicians who just want to help their patients. I’ve actually coined the term “undiagnosed women’s disease,” or “UWD,” to cover the multitude of cases that our current tools can’t help us diagnose and treat. In her book Doing Harm, Maya Dusenbery called this lack of understanding of women’s medical conditions understanding of women’s medical conditions “medically unexplained symptoms.” The Office of Research on Women’s Health at the National Institutes of Health refers to women as “the three U’s”: understudied, underdiagnosed, and undertreated.
If you’ve noticed a theme here, you’re right. Across every area of health care, women are less researched, less understood, and quite literally less cared for than men.
One problem is that many providers aren’t comfortable with a diagnosis as vague as “UWD.” They want to give a name to what’s wrong, and their patients want answers. So they default to the diagnosis that makes the most sense at the moment, even if it’s not actually a good fit, just to have some parameters to put around the situation. Such diagnoses are often of “syndromes,” which is a wastebasket term for a collection of symptoms without an underlying etiology (known cause).
Rosita’s diagnosis of premenstrual syndrome is a perfect example of this. PMS is a collection of symptoms attributed to the event of monthly menstruation but without a known underlying causation. This was the closest her providers could come to what was happening to her without a battery of invasive tests, so that was the diagnosis she was given.
In order to receive an accurate diagnosis and lifesaving treatment, a woman will often need to convince her provider—despite previous diagnoses to the contrary—that something is actually wrong. Women with microvascular disease may have perfectly normal stress tests but suffer from terrible recurring chest pain; those same women could drop dead of a heart attack a week later with nothing on their medical charts to indicate that they were at risk. Woman having strokes can present with headaches and dizziness without the standard (read: male-pattern) droopy face and weak extremities; because providers don’t know how to recognize female-pattern symptoms, women having strokes often fail to receive critical interventions like tPA (the powerful clot-busting drug).5 Women with lung and ovarian cancers (two of the top cancer killers of women, both more likely to be lethal than breast cancer) may present with few, if any, definitive symptoms until it’s too late and the cancer has metastasized.6 And all along the way, doctors without access to critical gender-based information are treating them for the gender-based information are treating them for the wrong things, unable to diagnose them at all—or, worse, brushing off their symptoms as “all in their heads.”
This points not only to our inability to properly diagnose women physically but also to the gender and cultural biases women face in our medical system—from both male and female doctors. The perception of how women experience pain and the management of women’s pain both in and out of a hospital setting are highly problematic. Women of color are even more likely to have their pain minimized; one study found that “African Americans and Hispanics were less likely than white patients to receive any pain medication and more likely to receive lower doses of pain medication, despite higher pain scores.”7
Women are also more likely to receive a psychiatric diagnosis when they report their symptoms, regardless of the nature of those symptoms. As several writers have observed, the words “hysteria” and “hysterical” are derivatives of the Greek word for uterus, hystera. While formal diagnoses of hysteria are thankfully a thing of the past, there is still a pervasive unconscious belief in the medical culture that women are prone to illogical and unreasonable outbursts. Then, when women express their pain and distress, their complaints are taken less seriously because they are perceived as less likely to be a product of physical disease.
Given the knowledge we currently have about the differences between men and women, one might think that there would exist at least a general set of protocols and criteria for medical professionals to apply when diagnosing and treating women. Unfortunately, this is not the case. Most drug trials, testing, and research studies have been (and in many cases continue to be) performed exclusively on men. Our testing and treatment protocols are developed to identify male-pattern symptoms. The foundational research on which our new experiments are based is still male centric and male dominated. And despite the growing body of evidence to the contrary, the majority of the medical world continues to assume that, with the exception of their sex organs, men and women are biologically identical.
The combination of cultural and procedural bias with the reliance on a male model for scientific inquiry has rendered our current medical system male centric. And while few practitioners consciously subscribe to the illogic and scientific inequality that has contributed to the creation of that system, they are nevertheless operating within it and according to its rules. The result is that women whose conditions or experiences don’t line up with male models are at increased risk of receiving inappropriate, inferior, or even injurious care.
It’s a huge problem—one I’m working diligently every day to solve.
In my tenure as an emergency medicine specialist, educator, and researcher, I have observed six key areas where the biological, biochemical, and biopsychological variations between men and women have created blatant and potentially harmful misalignments in diagnosis, testing, and treatment both inside and outside the emergency department. These areas are as follows:

  • Cardiac and stroke diagnosis and treatment in women
  • Prescription and dosing of pharmaceuticals
  • Subjective evaluation of women’s symptoms (including the role of mental health diagnoses)
  • Pain and pain management
  • Hormones and female biochemistry (including prescribed hormones)
  • Gender, cultural, and societal conventions, including LGBTQ/transgender issues

In Part II of this book, you will learn more about each of these six major areas of health where women consistently deal with misdiagnoses, inadequate treatment, and poorer outcomes. Each chapter will include not only powerful stories and discussion of specific diseases and treatments but also critical information about potential symptoms, warning signs, and women-specific treatment options that will empower you to have better conversations with your providers and increase your likelihood of receiving appropriate, potentially lifesaving care.
By the time you turn the last page of this book, you will have all the information you need to approach this new conversation with your providers with confidence and clarity.
Every day brings progress. But until the medical establishment catches up with the science, it’s up to you to take a more active role in advocating for yourself and your loved ones. Only in this way can you have immediate influence on your care and see immediate results.
In other words, it’s time to join our Women’s Health Revolution.

What Matters—Your Key Takeaways

  •  Every area of our medical world has evolved to be male centric in a multitude of ways.
  • Women are underserved, understudied, underdiagnosed, and undertreated in multiple areas of high public health significance—including cardiac disease, stroke, cancer, and pain disorders, as well as women-specific conditions. If you are a woman, you are at greater risk of misdiagnosis, improper treatment, and complications in common medical situations.
  • Women are underrepresented in clinical and pharmaceutical research trials, and most trials do not account for sex differences as a variable.
  • Some populations of women—like pregnant mothers, the elderly, and women of color—are even less represented than women in general and have measurably poorer outcomes.
  • Doctors often don’t have the tools necessary to diagnose female expressions of common health conditions

References:

  • M. S. Arruda et al., “Time Elapsed from Onset of Symptoms to Diagnosis of Endometriosis in a Cohort Study of Brazilian Women,” Human Reproduction 18, no. 4 (2003): 756–759. doi: 10.1093/HumRep/deg136; G. K. Husby, R. S. Haugen, and M. H. Moen, “Diagnostic Delay in Women with Pain and Endometriosis,” Acta Obstetricia et Gynecologica Scandinavica 82, no. 7 (2003): 649–653, https://www.ncbi.nlm.nih.gov/pubmed/12790847.
  • Janet Woodcock, MD, John Whyte, MD, MPH,and Milena Lolic, MD, MS, “2017 Drug Trials Snapshot Summary Report,” US Food and Drug Administration, January 2017, https://www.fda.gov/media/112373/download.
  • Natalie Jacewicz, “Why Are Health Studies So White?,” The Atlantic, June 16, 2016, https://www.theatlantic.com/health/archive/2016/06/why-are-health-studies-so-white/487046.
  • C. R. Bankhead et al., “Identifying Symptoms of Ovarian Cancer: A Qualitative and Quantitative Study,” BJOG 115, no. 8 (2008): 1008–1014. doi: 10.1111/j.1471-0528.2008.01772.x.
  • Ronald Wyatt, MD, MHA, “Pain and Ethnicity,” AMA Journal of Ethics 15, no. 5 (2013): 449–454. doi: 10.1001/virtualmentor.2013.15.5.pfor1-1305

 

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