WHEN DOCTORS DISMISS PERIOD PAIN, STUDENTS ARE LEFT TO ADVOCATE FOR THEMSELVES AT SCHOOL. WORDS BY KATIE SWYERS
O n a warm day in May 2011, 15-year-old Sara Stewart* sat in her family doctor’s small, crowded waiting room. Since getting her first period at age 11, she dealt with debilitating pain once a month. Her cramps always felt like an axe was trying to rip itself out from inside her lower back, hitting her again and again until her muscles locked. Sometimes, she’d get so nauseous she’d throw up.
For two years, Stewart thought this was a normal part of having a period. By age 13, though, when her friends started getting their periods, she realized her symptoms were abnormal. But she put off the appointment, not wanting to talk to her old, male doctor about her period.
Stewart walked into her appointment hoping to get a prescription for birth control. She’d been reading up on polycystic ovary syndrome (PCOS)—a disorder caused by hormone imbalances that can cause irregular periods, abnormal hair growth, acne and cysts on the ovaries. She’d read that birth control could help treat PCOS and manage the pain.
When she told the doctor that she might have PCOS, he took no action. He told her that nothing about her period was out of the ordinary and that she would grow out of it. When she pushed and asked if she could be prescribed birth control, he said no.
“You’re too young for me to put on birth control. You’re going to gain weight, so I don’t think I should [prescribe it],” Stewart, now 23 and a 2019 Ryerson biomed graduate, recalls him saying.
Instead of birth control, Stewart left her family doctor’s office with a prescription for an anti-inflammatory and a feeling of deep discomfort. She did her best to go to walk-in clinics instead of her family doctor from that point on.
“I was 15, so I didn’t really know how to advocate for myself,” says Stewart. “And now that I think back on it, it’s like, ‘What the fuck, you’re worried that I’m going to gain weight when I’m telling you that I’m in pain and that I’m throwing up.’”
The Eyeopener spoke to three doctors specializing in obstetrics and gynecology, who all said many people like Stewart can struggle to have their period pain recognized, let alone diagnosed and managed.
For students who have been dismissed by the medical community and are struggling to find an explanation for their pain, it can be difficult to advocate for themselves in academic settings.
A 2019 review of 38 studies on painful periods from around the world, put together by researchers from Western Sydney University, found that people age 25 and younger are more likely to experience dysmenorrhea—the medical term for painful periods. Within this age group, 20 per cent reported missing school or university because of their periods, and 40 per cent said period pain had a detrimental impact on their studies.
There is a societal normalization of menstrual pain “as if it should be a part of a normal woman’s life to have pain that’s debilitating at the time of menses,” says Dr. Catherine Allaire, gynecologist and director of B.C. Women’s Hospital Centre for Pelvic Pain and Endometriosis. But Allaire notes that while some pain during menstruation is normal, period pain interfering with someone’s life is not.
A s Nicole Tinker sat in the emergency room of Toronto’s Mount Sinai Hospital with her mom in March 2017, she was thinking about her paper due the next day. She sent an email to her fashion professor explaining it would be late.
At the hospital, she was on opioid painkillers and had been put on an IV for pain medication when she first arrived several hours earlier. On the Uber ride to Mount Sinai she had been curled up in a ball, crying. At home, she had taken Naproxen, Advil, Tylenol and Aleve, all in the hopes of stopping the pain. “I would just put everything in my body—which clearly you shouldn’t do,” says the 2018 Ryerson fashion communication grad.
That same year, a specialist had confirmed that Tinker had endometriosis—a disorder where the lining that forms inside the uterus during a period also grows outside of the uterus. While the normal lining flows out of the body during a period, the one outside the uterus has nowhere to go, which can cause it to inflame surrounding organs. It can only be definitively diagnosed with a laparoscopy, an invasive surgery that cuts into the abdomen and inserts a camera.
Tinker describes her cramps as feeling like she is being twisted. “Like wringing out a towel basically, but with my insides.” Yet for a long time, because two consecutive family doctors told her that her menstruation was normal, Tinker says she felt like a drama queen when it came to her period.
In Tinker’s third year, her pain wasn’t just flaring up during her period anymore—it was every day. She says she missed two to three days a week that year. She dreaded group projects and often asked to work solo to avoid disappointing group members.
“It’s such a tedious process explaining over and over again that I’m in so much pain that I can’t go to class”
According to Ryerson senate policy, students can submit medical notes for academic consideration when they miss school due to illness. But for chronic health issues and disabilities, there’s Academic Accommodation Support (AAS), which allows students to receive accommodations without supplying a medical note each time. To qualify, students must submit documentation from a registered medical practitioner.
When Tinker was in that Mount Sinai waiting room, she was still in the process of applying for academic accommodations. She was frustrated when her professor emailed her back requiring a medical note to avoid a late penalty.
In the end, she got the extension after submitting her ER report. A week later, her accommodation letters were sent to her professors through AAS.
For post-secondary students, menstrual issues can be hard to diagnose due to access issues. Specialists typically have long wait times and only have appointments available during school hours, leading to more missed classes.
Allan Macdonald, the director of student health and wellness at Ryerson, recommends that students who are trying to diagnose chronic conditions, like endometriosis, turn to a family doctor or general practitioner over the Ryerson Medical Centre (RMC), which is set up for more “acute, episodic issues.” While the physicians at Ryerson are all family doctors, they’re on contract, so they can’t practice as consistently as traditional family doctors. “I’ll be transparent—it does get in the way of optimal care for students,” says Macdonald.
It can also be difficult for students whose primary doctors are in different cities, especially international students. Some students don’t even have a family doctor. Canadians aged 18 to 34 are the least likely group to have a regular health care provider, according to Statistics Canada.
Statistics given by the RMC show five out of 1,877 visits in September and 13 out of 1,999 in October were tagged with the code “menstrual dysfunction.” When Tinker’s specialist from Women’s College Hospital in Toronto first suggested she had endometriosis, Tinker felt validated—even though she had taken steps to self-diagnose.
Now, after two laparoscopies to remove endometriosis growths, a tested medication routine and regular pelvic physiotherapy, Tinker has found a way to manage her pain.
S ince coming to Ryerson, second-year social work student Alvea Hurlington has been juggling school and returning home to Peterborough, Ont. to see her doctor for pain medication. Like many, she does not have a diagnosis for her period pain and, like Tinker, her painful periods once sent her to the emergency room.
There, the doctors had to put her on a morphine drip, which slowly eased Hurlington’s pain enough for her to go home. The doctors asked her to return the next day for an ultrasound, which showed that her uterus was “tipped back” and her bowels and midsection were inflamed.
“It was excruciating having someone press on me,” she says. But when the pictures came back, the doctors said they were inconclusive. She described her doctors as “almost dismissive.” At the same time, though, she saw they were stumped.
“Unfortunately in medicine, we still don’t have all the answers,” says Dr. Batyra Grundland a family physician at Women’s College Hospital in Toronto, when asked about experiences like Stewart’s and Hurlington’s. Grundland, who specializes in medical education, says one area that the medical community is struggling with is pelvic pain; meaning “pain from intercourse and problems with persistent menstrual pain that does not have a clear explanation of endometriosis or an infection.”
Historically, there has been very little research and money put into any gynecologic condition. Allaire says there has been a positive trend in recent years. Centres like the B.C. Women’s Hospital have received large amounts of funding for research, however, “it’s a drop in the bucket” when you compare funding of menstrual issues to other chronic conditions like heart disease or diabetes.
For Hurlington, having a diagnosis is not the most important thing in the world. “If I still wake up in the middle of the night and have those three hours of debilitating pain—those two days where I can’t do anything—then that’s useless to me, she says. “Putting words to it would be nice but it’s still useless if there isn’t a way to manage it.”
Both Allaire and Grundland advocate for prioritizing treating pain over seeking a definitive diagnosis for conditions like endometriosis. Family doctors might not remember every symptom a patient feels, so Allaire says self-advocacy is important. She suggests patients find lists of endometriosis symptoms online and, while knowing they might not check everyone, use those lists to advocate for themselves.
Hurlington hasn’t visited the RMC yet because she’s afraid of being brushed off yet again. She hasn’t applied for academic accommodations at Ryerson either. “It’s such a tedious process explaining over and over again that I’m in so much pain that I can’t go to class,” she says. “It’s sometimes easier to just try and push through it, even though that’s not a good solution, given it’s not my best work that’s being handed in.”
E ight years after visiting her family doctor about it for the first time, Stewart still doesn’t definitively know the cause of her painful periods.
She did get birth control in the end through the RMC and she was right—it did help her manage her pain. To confirm she had PCOS, however, she would have to go off birth control so that her hormone levels in her blood work would be accurate.
Stewart says she doesn’t feel the need, though. In the end, the diagnosis didn’t matter. She just needed to be able to go to school without pain.
*Last name has been changed
With files from Sarah Krichel