On February 9, 2016, at 3:45 p.m., Gail Benshabat sent a text to her 27-year-old daughter, Lisa, asking if she wanted to catch an early movie. Benshabat was wrapping up her workday at a quiet special needs school in the north end of Toronto, about a 30-minute drive from the third-floor apartment where she lived with her daughter.
Lisa never texted back.
“I knew something was wrong,” Benshabat recalls. She returned home and rushed up a flight of stairs with an immediacy only a mother can know, calling out Lisa’s name. With no response, she put her bag down and rounded the corner of her kitchen into her daughter’s bedroom down the end of the hallway. Lisa was hanging lifeless from the ceiling fan in her room.
Lisa left three letters for her loved ones: one to Benshabat, one to her older sister, and one to her extended family and friends. “Mom,” she wrote on the first of five pages, “I want you to know that you did everything you could to help me and more…. I couldn’t have gotten this far in life without your endless love and support. At this point you can tell that I lost hope that I would ever get better.”
Lisa suffered from interstitial cystitis (IC), a little-known medical condition characterized by chronic pelvic pain and a heavy pressure in the bladder and pelvic region, often associated with urinary frequency and urgency. It manifests in sharp, shooting pain, pressure, or spasms in the bladder, pelvic region, and lower back. It has been likened to carrying a bowling ball with knives in it.
IC currently has no known cause or treatment. It is also tremendously difficult to diagnose because its symptoms mimic other conditions. It’s not unusual for a diagnosis to take up to 10 years.
The pain of the illness—a pain that has been classified by some doctors as being worse than bladder cancer—was wreaking havoc on Lisa’s life. She felt she had frequency to urinate more than the average person. But doctors said there was little they could do. Even after her death, the message was repeated. On the night of Lisa’s funeral, Benshabat woke up at 3 a.m. and started writing emails and letters to the doctors who cared for her daughter. Many replied offering their sympathies; yet, one psychiatrist responded with his condolences but still suggested that Lisa’s pain was all in her head.
This is a common theme for many female chronic pain sufferers: their symptoms are dismissed as psychosomatic despite studies and tests confirming the opposite. According to a report in the Journal of Law, Medicine and Ethics in 2001, “women who seek help are less likely than men to be taken seriously when they report pain and are less likely to have their pain adequately treated,” the researchers conclude. These findings have been repeated in medical journals in several years since.
It’s not uncommon for women with marginalized illnesses like IC to feel hopeless, even suicidal. It’s why chronic pain patients—often women—attempt suicide four times more than the general population, and why suicidal ideation is three to four times higher in IC sufferers. Even in a field that has been criticized as sexist for decades, doctors continue to perpetuate stigma against women—and for chronic pain sufferers like Lisa, that can often be the difference between life and death.
There were few years in Lisa’s young adulthood that weren’t plagued by constant pain. She found some relief in 2001 when, after Benshabat took to the internet to conduct personal research on IC, she found a urologist in Toronto who would prescribe the pain medication Pyridium. The pills relieved the bulk of Lisa’s symptoms for a couple months when she was 12 and again when she was 24, but she still experienced intermittent pain, spasms, and urinary urgency. Unsure when the symptoms would hit, she slept in until noon most days hoping to avoid a longer day of pain.
Many doctors dismissed Lisa. After waiting for months for an appointment with a Toronto IC specialist, she was told the pain was nerve related and there was nothing to be done. Another specialist in St. Catharines, Ont. offered no hope.
Then, a female doctor at Women’s College Hospital gave her some hope, conducting her own voiding test in her office. “It is not in your head, Lisa,” the doctor confirmed. Finally, someone set the record straight. For the first time ever, a doctor confirmed what Benshabat and Lisa knew all along: her pain was real.
Desperate, Benshabat and Lisa turned to a doctor at Toronto Western Hospital to insert a sacral neuromodulator, a surgically implanted device that sends out mild electrical pulses to the nerves in the lower back. The device helps people with urinary function and with chronic pain. But it doesn’t help everyone.
By her 24th birthday, Lisa had seen the inside of more than 10 specialists’ offices across North America—and no one could stop her ongoing physical agony
“It took us some time to persuade [the urologist] to try out the sacral neuromodulator,” Benshabat says. Eventually, he agreed. But after two weeks, Lisa noticed that there was no change to her symptoms and asked that it be removed. Postsurgery, as Lisa was wheeled into the recovery room, tears streamed down her face from the pain she was experiencing. The doctor turned to her. “I don’t know what else I can do for you,” he said and promptly left the room. There was a look of horror and outrage on the attending nurse’s face. “She went to bat for us,” Benshabat says.
When Lisa and her mother left the hospital that day, Benshabat “filed that bad experience away at the back of my mind. Our hopes were shattered,” she says. “I wanted to file a complaint to the hospital but at this juncture I needed all the strength to keep Lisa’s hopes up.”
Benshabat and her daughter did not stop searching for relief. In 2014, Lisa visited pain clinics, received more medication. She had MRIs and CAT scans. She was tested for EhlersDanlos, a connective tissue disorder, but a geneticist ruled it out. She saw physiotherapists, naturopaths, acupuncturists, and an osteopath.
By her 24th birthday, Lisa had seen the inside of more than 10 specialists’ offices across North America—and no one could stop her ongoing physical agony.
There were still options. Benshabat encouraged Lisa to keep trying. There was a doctor in Kitchener, Ont., who offered up bladder instillations, a cocktail of medicines that are put into the bladder directly. The same doctor’s research assistant encouraged Lisa to take part in their clinical trial for a new IC medication. Lisa declined: she wanted immediate relief, not a trial. The research assistant was disappointed. “You know some people with IC take their lives,” she told Benshabat.
Benshabat kept searching. She found a highly recommended physiotherapist in Kitchener with remarkable results in relaxing pelvic floor muscles. Later, she came across an IC specialist in Michigan, a three-hour drive away, but a date mix-up made Lisa miss the appointment. It wasn’t rescheduled.
“We didn’t want to overdo it,” Benshabat says. “So many doctors were all repeating the same story: It’s a disease that is not well understood and that they don’t know enough about.”
Fifteen years after her first experience with pelvic and bladder pain, with no answers on the horizon for how to live a normal, pain-free life, Lisa gave up.
Lisa’s experience is not singular, and gender biases remain glaringly common in North American physicians’ offices, the ER, and medical research—regardless of the ample studies highlighting the problem. While an estimated one-tenth of Canadians under 44 experience chronic pain, a disproportionate number of sufferers are female.
Yet, according to “Relieving Pain in America,” a 2011 report published by the Institute of Medicine on the public health impact of chronic pain, women’s reports of pain were more likely to be dismissed. Joe Fassler’s eye-opening essay for The Atlantic in 2015 details this through the story of his wife Rachel and her dismissive experience in a Brooklyn, New York emergency room department. Nurses frequently told her to stop crying from the pain—a pain that was the result of a twisted fallopian tube that her attending physician misdiagnosed as kidney stones because he didn’t check the tests before finishing his shift.
Rachel’s experience recalls the “Yentl Syndrome,” a term coined in a 1991 academic paper by Bernadine Healy, noting that women do not receive aggressive or proactive treatment in their initial encounters with the health care system until they “prove that they are as sick as male patients.” The study was named after the 1983 film Yentl starring Barbra Streisand, whose character dresses up as a boy in order to receive the education she desires. Healy found that men were often expedited and taken more seriously than women when treating cardiovascular complaints.
Later, in 2014, Katarina Hamberg, a researcher out of Sweden’s Umea University, found “women are less likely than men to receive more advanced diagnostic and therapeutic interventions” for coronary artery disease, Parkinson’s disease, irritable bowel syndrome, neck pain, knee joint arthritis, and tuberculosis—all chronic illnesses—even when they presented with the same severity of symptoms as their male counterparts.
For Abigail, an artist from Kingston, Ont., suffering with endometriosis, it’s a familiar story. Abigail, whose name has been changed to protect her identity, suffered debilitating menstrual cramps since the age of 14. Her first doctor dismissed her suggestion it was endometriosis, another chronic and hard-to-diagnose disease that manifests in severe menstrual cramps and gut-wrenching pain; she was instead prescribed Midol, a medication billed to help menstrual pain, and Ibuprofen. The pills made a small difference.
But in 1999, Abigail collapsed from excruciating menstrual cramps during her first day on a new job in Toronto. The emergency room doctor she saw said it was a common ailment. “This is part of being a woman,” he said. He prescribed Ponstan, a muscle relaxant, which Abigail would use religiously for the next decade.
It would take almost two decades before Abigail was diagnosed with endometriosis. Like Lisa, she found herself turned away by doctors who dismissed her pain, or pumped her full of pills and antibiotics that failed to relieve her. In 2005, she was hopeful when a gynecologist in Montreal discovered a dermoid cyst on her ovary and scheduled surgery to remove it; but during the procedure, the doctor was unable to do so without also removing her ovary. Without Abigail’s consent, the cyst was left alone.
Her pain never subsided. Following the surgery, she emailed the gynecologist a succinct list of detailed dates and pain recurrence since the surgery, along with a rational fear it could be symptoms of ovarian cancer. He wrote back: “Blah, blah, blah. Contact the receptionist for an appointment.” Abigail descended into a depression. “I thought I was going mad because no doctor could explain what was causing the pain,” she says.
Abigail and Lisa aren’t alone. Writer Olivia Goldhill from New York had to self-diagnose endometriosis after her primary care doctor “waved his hands dismissively” when she asked if her pelvic pain could be connected to her menstrual cycle. And Sarah Barmak, in her 2016 book Closer: Notes from the Orgasmic Frontier of Female Sexuality, cites a similar story from Vanessa, a woman who went from having multiple orgasms to experiencing intense pain during sex. She was told by doctors, who were unable to successfully treat Vanessa, to “just not have sex” as a means to cure troubling uterine pain. Barmak doubts a man would be offered similar advice.
Are doctors dismissing pain in women because they themselves cannot find an answer?
A majority of those suffering from chronic pain are women, and often, their disorders are not easily understood by the medical establishment. This is due in part to a lack of funding and research available.
An editorial in the British Journal of Sports Medicine explains menstruating women are “being excluded from clinical trials, and that when they are included, they’re tested early in their menstrual cycles, when their hormone levels are closest to men’s.” And according to Julie Palmer, a researcher at Boston University, it’s still easier to recruit male test patients for some disorders, leaving women behind.
Meanwhile, some studies lay the blame on women and their inability to communicate efficiently with doctors. The University of California, Davis’s Michael Moskowitz says men are better able to voice their pain symptoms in ways doctors can respond to. Sweden’s Hamberg echoes this, noting that “men describe their symptoms in a straightforward and demanding way, while women often… give vague symptom descriptions and hesitate to accept potentially dangerous measures such as surgery.”
And even though female chronic pain patients outnumber male chronic pain patients, there are more male pain physicians than female pain physicians in North America. Because women experience pain more intensely, more frequently, and respond differently to pain medication and pain management therapies, male doctors may have trouble understanding their symptoms.
Abigail, like many, is still at odds with how little her doctors could assist her. When asked how the doctors came to diagnose her in 2013, she said there was “always a lack of information”—all of her doctors would consult a massive tome of pharmacology to diagnose the symptoms, but none of the medications they prescribed helped completely. Despite the numerous conferences, newsletters, and medical journals available to keep doctors in the loop surrounding diagnoses and available treatments, there is no guarantee specialists are always up-to-date.
The Royal College of Physicians and Surgeons of Canada says a subspecialty of Pain Medicine was approved in October 2010 and new national standards were implemented effective July 2013—meaning more research and treatment for chronic pain sufferers could be imminent. Senior communications specialist Melissa Nisbett, however, can’t confirm that there is a central database or online forum for doctors to consult for puzzling and seemingly incurable symptoms.
Desperate for answers, many, like Benshabat, turn to the internet, joining forums for support and searching for more understanding specialists abroad. Others simply linger in pain. As Carolyn Reilly, a reproductive justice advocate who suffers from endometriosis, writes in an article for Bitch magazine, something must change. “Female pain exists in a crossroad of stigma, disbelief, and misogyny. Female pain must be regarded as legitimate,” she says. “Because disbelieving and delegitimizing female pain is a form of oppression.”
When Lisa gave up her fight against IC, Benshabat felt responsible to keep searching for answers. More than a year since Lisa’s death, she is carrying on her daughter’s legacy by creating more awareness surrounding IC and those suffering with chronic pain, participating in talks at Canadian universities about the emotional impact of IC. She is also attending international conferences in the U.S. to share Lisa’s story with others.
“There is a moral responsibility by our medical system to turn their sights toward people who are giving up on life,” Benshabat adds. “I don’t want anyone to have to suffer like my daughter had to.”
These days, Benshabat often thinks back to the letter Lisa left for her. She is reminded of her daughter’s loss of hope, of the years in doctors’ offices that left her feeling defeated.
In the end, Benshabat’s efforts are calls for restored hope—that someday, Canadian women suffering with chronic pain, just like Lisa, will be treated with more respect and dignity by the health care providers intended to help them feel better.