At 28, I’ve seen the inside of more hospitals than most people do in their entire lives—thanks to a mix of chronic clumsiness, an assortment of one-off illnesses and what I had deemed up until recently as “mystery pain.” Point being, when it comes to medical circumstances I’ve got pretty thick skin and have a reasonable understanding of how the system works. But in March, right when pandemic fervour was hitting, I felt pain unlike any other I had experienced before: I was fainting, vomiting, hardly coherent and had to be taken by ambulance to the hospital yet again. Months of hard recovery followed before I could even go for a normal walk around the neighbourhood.
Polycystic ovarian syndrome (PCOS) was the culprit, and while this wasn’t the first time it had caused a trip to the ER, it was definitely the worst. An under-researched condition, PCOS can be difficult to diagnose and even harder to treat. Symptoms have varying levels of severity depending on the person—PCOS can cause everything from fertility and skin issues to insulin resistance and depression—and you need to meet a number of criteria involving physical and hormonal changes to be diagnosed. But these criteria can be interpreted differently by every physician.
In my case, I had known something was wrong long before March. For years, I had been going into doctor appointments complaining about this unfamiliar pain, but I felt I was never taken seriously. I was told to take Advil, that our bodies go through unexplained phases, and one time my doctor even suggested I’d injured myself skiing—even though I said I hadn’t been skiing in eight years.
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This persistent undermining and dismissive behaviour towards patients isn’t uncommon, unfortunately, especially when it comes to women’s health issues. It’s what Sasha Ottey calls “health care gaslighting.”
“You hear about gaslighting all the time in terms of relationships, but you do have a relationship with your [health care] provider and it’s a rather intimate one” says Ottey, the executive director of the PCOS Challenge, a North American advocacy group based in Atlanta that works with partner countries like Canada, Australia and India on shifting policy and providing education for both patients and practitioners.
Considering that nearly 13% of women are affected by PCOS worldwide and it classifies as a global health issue, Ottey says it’s confusing that it’s not more widely discussed or studied in medical communities. Even where research has been invested, the bulk still focuses on the impact of PCOS on fertility, leaving critical aspects, like how it affects mental health, in the dark.
It’s no wonder then that women across North America report being dissatisfied with the process of getting a PCOS diagnosis and often feel they are left out of the decision making, instead of working as a partnership with their doctor.
“It’s too easy to leave the appointment without feeling heard or agreeing with the treatment,” says Marianne Rodrigue, the community development and outreach coordinator for Le Centre de Santé des Femmes in Montreal. “You have to be willing and ready to speak up.”
Le Centre was started by radical feminists seeking gender equity through health education in the 1970s when women were often struggling to find answers about sexual health within traditional settings. Although the system has improved over the past half-century, Rodrigue says there are still major roadblocks people face when seeking care from province to province. These can be a shortage of primary care physicians, specialist wait times and even online misinformation.
In Rodrigue’s experience, it’s not uncommon for doctors to make flash assumptions about female-identifying patients that might lead to disappointing or blanketed treatments. Which is why she recommends young people read and ask questions through platforms like Sex & U to get a better understanding of what’s considered normal when it comes to their bodies (and to learn about topics that may not be covered in sex ed curriculums, such as consent, gender identity and self-image).
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From a doctor’s perspective, there are a few reasons why misdiagnosis may happen. Dr. Jamie Kroft, a physician and endometriosis specialist at Sunnybrook Health Care Centre in Toronto, says that while women are becoming more comfortable discussing sensitive topics in appointments and are being more proactive in seeking care, there is still an education gap that may cause some conditions to be overlooked, especially in the case of PCOS or endometriosis where the range of symptoms and severity levels are so varied.
“[Patients] could be sort of pursuing one symptom rather than looking at the whole picture,” says Dr. Kroft. “There’s a big overlap between symptoms that are very common and then symptoms that represent a specific disease.”
Given 75% of people who menstruate worldwide experience menstrual pain, it’s understandable why a doctor may not want to jump to conclusions about more serious conditions. But Dr. Kroft says that patients are most often the experts when it comes to their own bodies and know when something feels off. If they can work with their doctors finding the problem, she says this can help both parties figure out the treatment plan.
Rodrigue says one way to work better with your doctor and to combat potential misunderstandings is to do your homework before an appointment and to come in prepared with specific concerns to help narrow down the issue, even if it may feel over-the-top or awkward. “If you’re clear on what you want and how you want to be heard, you can make it easier for your doctor to know where you are at and to work with you to find the best course of action as a team,” she says.
But even if you come into an appointment confident and prepared, the results can sometimes be disappointing. Ottey says that when she was going through the final stages of her diagnosis process, her doctor didn’t help her to better understand the condition beyond giving her a short pamphlet.
“I asked her about my missing period and she said ‘Don’t worry about it, plenty of women would love not having their period,’” Ottey recalls. “I’d already read through the pamphlet before I left her office, so that was how limited the information was in there.” Repeated instances of having your concerns dismissed in this way is a sign it’s time to switch doctors.
With this seeming to be a pretty commonplace experience—only 25% of women surveyed globally report being satisfied with information given to them by their health care providers—it’s natural that one of the first places people turn to find answers and support, and to quell some of the anxieties that come along with a PCOS diagnosis, is the internet. And while this can be a double-edged sword filled with hours of medical doom-scrolling, it can also be a really vital tool for getting localized information and anecdotal recommendations from people in similar situations.
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The latter has been the case for Bianci Ricci. The Vaughan, Ont. resident says that advocate pages like PCOS Support Girl have been useful in acting as a safe space among peers, but are almost entirely U.S.-based. She started her own smaller, Canadian-specific group after going through years of pain and dismissal in medical appointments.
“My family doctor growing up was not helpful at all,” says Ricci. “I had to essentially force the diagnosis.”
Ricci says she spoke up multiple times in appointments with her doctor throughout her teen years, when her discomfort was substantial enough that she was vomiting and fainting, yet she was told this was just part of having a period and to “deal with it.” It wasn’t until she left for university and began swapping stories with floormates that she realized her symptoms, like weight fluctuations and hair loss, meant she likely had endometriosis or PCOS.
“I had to be extraordinarily aggressive with [my doctor] in order for her to send me for these tests. I told her ‘I don’t think that this is normal and I’m tired of you telling me that it’s just going to be like this,’” says Ricci. “It went from ‘Oh I’m sorry, you just have painful periods’ to four different diagnoses in a matter of two months.”
Since getting formally diagnosed with dysmenorrhea, leukorrhea, PCOS and endometriosis, Ricci has looked beyond traditional medicine to treat her various symptoms. She’s taking hormone-balancing inositol, seeing a naturopath and now eats an entirely vegan diet—something she says isn’t necessarily a one-size cure-all, but has changed her own life for the better.
“The only thing I’ve gotten from going a traditional route is a naproxen prescription,” says Ricci. “I find that the doctors really don’t know much about our condition.”
The Canadian medical system has a clear need and responsibility to do better by women and people with uteruses, and while it seems like a far cry for now, work is underway to make it happen. One of the most promising methods researched in Canada so far is the introduction of stronger menstrual education into curriculums. In 2019, the Centre for Pelvic Pain & Endometriosis at BC Women’s Hospital and Health Centre ran a pilot program with high school students that led to young people being able to better identify warning symptoms of PCOS and endo, and to build their comfort levels when discussing sensitive medical topics.
Philippa Bridge-Cook, Chair of the Board of the Endometriosis Network Canada, is optimistic that this type of program would be a success if scaled nationally. While her group is working at a higher level to co-lead efforts on a government advocacy group called EndoAct, there are still many tools she says patients can make use of to feel better heard in appointments, including support groups and online networks.
“Most people find it really helpful to have a support person with them when they go to appointments,” says Bridge-Cook. “Especially if they’ve faced dismissal from doctors before, it just tends to shut people down and they feel worried or more nervous about speaking out again.”
The current system is obviously failing so many of us, but that’s why work to expose health care gaslighting and bring more attention to women’s health issues is so important—it validates and protects a group being systemically flattened and ignored. “You’re not a hypochondriac as some may try to lead you to believe,” Ottey says. “That’s just dismissing women and our experience when we know that something is wrong.”