Photo: Raina + Wilson
Why women’s pain is dismissed, undiagnosed and undertreated
Katie Luciani was 11 years old when the pain began. That’s when she first got her period, with cramps so excruciating they made her vomit. “We went to see my family doctor at the time and she dismissed it, saying, ‘There’s nothing wrong with you. Everybody gets cramps. Just take Advil.’” But the pain got worse when Luciani was a teen. The same doctor put her on birth control, which dulled the intensity slightly. Nevertheless, she came to expect that once a month, she’d feel a twisting in her pelvis and experience stabbing cramps that jolted through her like electrical shocks. Her doctor continued to tell her that cramps were normal.
After high school, Luciani moved from Toronto to Vancouver to study media arts. One day, she experienced a new kind of pain in her abdomen. “It went from a five to a 20 very fast,” she recalls. She hurried to the hospital, where staff found fluid in her abdomen, caused by a ruptured ovarian cyst. Once again, Luciani was told, “There’s nothing to worry about—it’s normal.” The physician gave her morphine and sent her home. But throughout the course of the year, more cysts ruptured, and each time, Luciani faced the same message in the emergency room: “You just have to get through it.”
When she was 25, Luciani found a gynecologist who told her the symptoms sounded like endometriosis, which occurs when the uterine lining grows in other areas of the pelvis, where it doesn’t belong. He booked her in for exploratory surgery to look for signs of the painful chronic condition, but in the end, he didn’t find anything wrong. (Learn more serious health symptoms you should never ignore.)
Luciani was filled with hopelessness. She’d been sure she had endometriosis, but a doctor was telling her that wasn’t true. In too much agony to work, she moved back to Toronto, where her family lived. She searched for a new doctor who could help her, but after reading the report from her surgery, each health practitioner said the same thing: since the procedure hadn’t led to a diagnosis, nothing was wrong with her. She was told the pain was in her head and was offered antidepressants but never a solution for the pain. “I just felt crazy at that point,” she recalls.
Finally, at age 26, after having consulted with five doctors since her initial surgery, Luciani found one in Atlanta who was willing to repeat the procedure. She paid nearly CAD $40,000, and this time, the results were conclusive: she had endometriosis. Three years later, she would also be diagnosed with polycystic ovary syndrome, a condition that affects women’s hormone levels and can result in cysts in the ovaries.
Luciani isn’t the only woman to spend years having her pain dismissed, or to be forced to advocate for herself with doctor after doctor simply to secure a diagnosis. A 2006 study published in the British Journal of Obstetrics & Gynaecology interviewed women with chronic pelvic pain and concluded that “most felt that their pain and suffering had not been legitimized by at least one doctor that they had seen.”
Over the past few decades, researchers have found that women’s pain is often taken less seriously than men’s and, as a result, it frequently goes untreated or undertreated in Western medicine. There is no lab test to evaluate pain, so it’s up to a patient to describe their experience—and up to their doctor to believe them. But, as Luciani learned, health care providers can be quick to conclude that a woman’s pain isn’t so bad or is “all in her head”—an attitude that can lead to prolonged suffering and can put women’s health at serious risk.
Pain is an unpleasant sensory and emotional experience, but because you can’t see it, it’s nearly impossible to measure. Still, there is reason to believe that women’s pain is different from men’s. According to a review in the British Journal of Anaesthesia, an expansive body of literature has shown that women are not only more at risk for pain but they feel it more intensely than men do. “If we asked people, ‘Do you have significant levels of pain?’ women are more likely to say yes than men,” says Dr. Roger Fillingim, professor at the University of Florida’s College of Dentistry and director of the University of Florida Pain Research and Intervention Center of Excellence. Furthermore, in lab studies, when people are exposed to a painful stimulus, Fillingim says the women in the trials consistently report feeling more pain than the men.
According to Dr. Angela Mailis, founder of the Pain and Wellness Centre in Vaughan, Ont., the reasons for these differences likely span biological, psychological, social and cultural factors. In her book, Beyond Pain: Making the Mind-Body Connection, she explains that women’s hormones play a role in women’s pain. For example, women are more sensitive to pain at certain stages of their menstrual cycles and are less sensitive during pregnancy. But cultural expectations like “men don’t cry” can also impact how individuals report or seek help from pain, and how physicians treat it.
Women are also more likely to experience chronic pain (a condition that lasts more than 12 weeks). According to the 2007-2008 Canadian Community Health Survey, nine per cent of men and 12 per cent of women ages 12 to 44 experience chronic pain, and those numbers only increase with age. Some of those conditions, such as Luciani’s endometriosis, are specific to women, but that doesn’t explain all of the difference. For example, compared to men, women are four to nine times as likely to experience fibromyalgia and about two and a half times as likely to get migraines and disorders of the temporomandibular joint (which connects the jawbone to the skull). (Here’s what you need to know about fibromyalgia.)
One potential reason for the difference, says Dr. Tania Di Renna, medical director of the Toronto Academic Pain Medicine Institute at Women’s College Hospital, is trauma from the past. “Women are more easily subjected to domestic violence, abuse and sexual abuse,” she says, and these events are associated with chronic pain. And Fillingim explains that the parts of the brain that are particularly affected by these adverse formative events are connected to the parts that participate in the perception of pain.
When pain is dismissed
While women are more likely to experience acute discomfort, they’re also less likely to receive adequate treatment for it. A 2001 paper in the Journal of Law, Medicine & Ethics entitled “The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain” found “women are more likely to be treated less aggressively in their initial encounters with the health-care system until they ‘prove that they are as sick as male patients.’”
This aspect of women’s pain has been documented in many ways. Back in the 1990s, a study published in the journal Sex Roles found that men were more likely to be given painkillers after heart surgery while women were more likely to receive sedatives. More recently, in 2008, when researchers looked at treatment of patients who came to the emergency room for abdominal pain, they observed that women were 13 to 25 per cent less likely than men to be given opioids and waited 16 minutes longer to receive them. The study, which was published in Academic Emergency Medicine, concluded that “gender bias may be a component.”
Other women, like Luciani, see doctor after doctor, being told that their condition is to be expected or isn’t that bad—in other words, pain, however severe, is normalized. According to a 2010 report from the U.S.-based Campaign to End Chronic Pain in Women, 50 per cent of American endometriosis sufferers will see at least five health care professionals before receiving a diagnosis or referral for their illness.
Overall, doctors are indeed more likely to attribute women’s symptoms to emotions or a mental health issue. In one 2009 experiment published in the Journal of Women’s Health, when men and women presented with heart disease symptoms, doctors were twice as likely to diagnose the women with mental health conditions.
Joanna Kempner, 44, had her migraine pain dismissed as a mental issue at just five years old, when her doctor told her that it was just a symptom of her “type A personality.” Later in life, another physician suggested her headaches were caused by the stress of not having a boyfriend. These experiences prompted Kempner, who is now an associate professor of sociology at Rutgers University in New Jersey, to study the treatment of migraines and write the book Not Tonight: Migraine and the Politics of Gender and Health. “There’s been this trend over time that migraines are about who you are as a person,” says Kempner, expounding on the deep-rooted stereotype that women who suffer from migraines are smart, middle- to upper-class women who just can’t relax. Even many migraine treatment recommendations offer simple stress-relief tactics, as if to suggest migraine patients can’t handle the pressures of daily life.
Why are women ignored?
There are many reasons why women’s pain might go undertreated. For one, as Mailis writes in her book, “When it comes to pain research, women traditionally have been excluded as research subjects. This was partially due to the fact that the researchers assumed that the results produced by studies of pain on men could be generalized to women too.”
Most experts agree that bias is likely to play a role. “Pain cannot be measured effectively, so physicians depend on their patients to report their pain,” says Kempner. “If the reporter is a woman rather than a man, very often that person is going to be interpreted through a cultural lens [in which] women are characterized as neurotic and whiny.” In fact, many of the physicians that Kempner interviewed for her research got the sense that their colleagues often believed migraine patients to be whiny.
Di Renna agrees. “I think there’s an issue with women being perceived as potentially more catastrophizing,” she says. “They will seek care more, they do have more [diagnosed] mental health issues, so they’re more likely to be dismissed versus a male.”
But women aren’t the only group who face these stereotypes—many minorities and ethnic groups are also at risk. “African Americans have a very difficult time being heard when they say that they’re in pain,” says Kempner. “The entire history of race was predicated on a false system of biological difference between racial categories. And much of that history was derived from a notion that people of African descent couldn’t feel pain. It was a necessary piece of scientific racism: one had to believe that Africans didn’t experience pain in order to send them out to do hard labour in the hot sun.”
Of course, we know this to be false today, but remnants of this belief still linger in the medical system. In fact, in a recent effort to determine why Black patients are undertreated for pain, researchers asked medical students whether they believed a number of false biological differences between Black and white people (that Black people have thicker skin, for one). Their results, which were published in the Proceeding of the National Academy of Sciences of the United States of America in 2016, showed that students who put stock in such statements—half of them held at least one false belief—were more likely to think Black patients suffered less pain and, as a result, recommended less effective treatment in the study.
Sentenced to suffer
The act of ignoring a patient’s pain can do lasting damage to a patient, both physically and emotionally. “The years of being dismissed and told that it’s in my head really took a toll,” says Luciani. “Even today, when my pain levels are really bad, it’s like, Should I go to the hospital? Do I really want to deal with somebody questioning me or telling me that it’s not that bad?”
A year and a half ago, in spite of her gynecological issues, Luciani gave birth to a baby girl, Kaya. When she takes her daughter to the doctor now, she worries, “Are they going to believe what I’m saying about her?”
Di Renna meets many patients who, like Luciani, saw multiple doctors while searching for answers before being referred to her care. “Some patients develop a sort of post-traumatic stress disorder from seeing physicians about pain,” she says. “They feel like they’re being dismissed. They’re not being listened to. They’re viewed sometimes as drug-seeking because they want a solution.”
For certain women, being told their pain isn’t that bad will mean that an important diagnosis is delayed or missed. A 2015 study from researchers in the U.K. concluded that it took longer for women to be diagnosed with bladder, colorectal, gastric, lung, and head and neck cancers, as well as lymphoma. And a 2016 report from The Brain Tumour Charity, also based in the U.K., found that diagnosing women’s brain tumours required more visits to a doctor and more time than men’s.
For other women, being turned away from treatment may lead them to give up on the medical system altogether. The 2010 report from the Campaign to End Chronic Pain in Women says, “Those afflicted are routinely misdiagnosed, shuffled from office to office, inappropriately treated and left without answers or hope, needlessly suffering. They often end up experimenting with myriad therapies, most with unknown benefits, until they find a treatment or combination of treatments to relieve some of their pain.”
For women with undertreated chronic pain, the prolonged suffering itself can also take a toll on their health. “There’s increasing evidence that poorly controlled pain is bad for you,” says Fillingim. “It disrupts a lot of physical systems, and in fact, chronic widespread pain is associated with earlier mortality, even when you control for other things,” such as gender, age and lifestyle factors.
Learning to listen
Clearly, something needs to change. Fillingim suggests rethinking how we describe pain entirely. For example, many studies look at how women’s sensitivity or tolerance to pain differs from men’s. But, “we may be biasing the conversation by suggesting that males are the reference group and women are too sensitive,” he says. “Maybe women are the reference group.”
The majority of experts agree that part of the solution is to include women in research and better educate medical students about women’s pain. Dr. Paul Yong, an OB/GYN and assistant professor in the department of obstetrics and gynecology at the University of British Columbia, says research on endometriosis has improved doctors’ understanding of the condition in recent years, and there have been major improvements in how medical students are trained to look for symptoms in women. Still, all of this takes time to trickle down into practice.
Though Luciani continues to experience pain on a regular basis, she eventually found a doctor who listens and truly hears her concerns. “The first time we met, I was in the room with him for about three hours, and he just listened and let me talk and didn’t interrupt me,” she says. “I left crying and wondering, Is this what a doctor’s appointment is supposed to feel like? I had never experienced that before.”
For so many years of her life, Luciani had felt dismissed by doctors. “I would always get anxiety: Are they going to hear me? Are they going to believe me?” Now, she’s learning to trust her own feelings again. “If something’s wrong, you shouldn’t have to think, Is this just in my head?”
Next, find out more diseases doctors are most likely to miss.