Photo by HAPPYRICHSTUDIO via Adobe Stock

When I learned I had precancerous lesions on my cervix and that my doctor was recommending I remove them surgically, my reaction went as follows: One, muted panic. Two, I’m definitely going to die. Three, Wait, what does that even mean?

So I did what anyone in possession of an Internet connection in 2021 would do: I went online to do my own research. The Internet confirmed what my physician had told me: the procedure, called a loop electrosurgical excision procedure, or LEEP, is a common one, in which a heated wire is inserted into the vagina to remove the offending cells.

I also found a host of women complaining of unexpected side effects. One article, in Cosmopolitan, was particularly concerning, full of stories of post-LEEP sexual dysfunction from women who had fully healed, yet who were unable to orgasm, feel pleasure during penetration, or have pain-free sex.

I mentally rehearsed the discussion I’d had with my gynecologist. He hadn’t warned me about any of this, which worried but did not surprise me. He had seemed more concerned with protecting my ability to get pregnant, even though I had repeatedly told him I was uninterested in bearing children. With scant scientific literature available—studies on post-LEEP outcomes were mostly focused on the procedure’s efficacy in preventing cancer, as well as pregnancy outcomes—it felt impossible to assess whether these risks were real. Was I about to subject myself to a procedure that might save my life, but at the cost of one of the things that brought real joy to it?

*

The disconnect between our experiences with medical professionals and what women and people assigned female at birth (AFAB) hear from our peers has been a central concern for feminist health activists for decades. When it comes to understanding what’s going on with our bodies, who can we trust?

For much of the twentieth century, the health-care system overtly treated AFAB people as unable to make decisions about their own bodies. Contraception was not decriminalized in Canada until 1969, and limitations on abortion were struck down even later, in 1988. Birthing people often had to endure labour alone, without partners present, and without the freedom to decide on pain relief options. Many women were ignorant of even the basic anatomical realities of their bodies.

In the 1960s and ’70s, activists dissatisfied with the limitations imposed by a misogynist health-care system, regressive laws regulating their bodies, and chauvinist doctors began to organize. They formed self-help groups, opened community clinics, and ran underground abortion networks. They performed vaginal self-examinations using a speculum, a flashlight, and a mirror.

What became known as the women’s health movement was grounded in a belief in empowering women with access to information about their own bodies and their sexual and reproductive health that was being denied to them by licensed health-care providers. In the U.S., the Boston Women’s Health Book Collective published revolutionary health-education text Our Bodies, Ourselves in 1970. Inspired in part by that text, a Canadian group called Women Healthsharing launched a quarterly magazine, which ran from 1979 to 1993 with a mandate to “take health out of the hands of the experts and return it to our own collective and individual hands.”

“The media landscape for women’s health information and feminist health perspectives in particular was dismal” at the time, says Connie Clement, founding managing editor of Healthsharing and longtime public health activist.

Healthsharing featured a mix of experts and lay writers reporting from across the country. “We always tried to write for lay women and women who had training in health. And I think it was a huge success for us that we had nurses and doctors contributing and reading, and we had women who had no special knowledge,” Clement says.

The subjects of Healthsharing ’s coverage were wide-ranging. In the inaugural issue, collective members Madeline Boscoe and Kathleen McDonnell penned a piece exploring birthing options in and out of the hospital, in response to feelings of “powerlessness, ignorance, and alienation from our bodies and our surroundings” in childbirth. Multiple issues reported on the use of Depo-Provera, a controversial contraceptive with potentially serious side effects. One column crowdsourced health information from readers (“We are trying to find out more about cervical caps in Canada,” read one callout). Other stories, like a piece on the labour conditions of garment workers, looked at the wider social and economic status of women in Canada.

This kind of education was key to both the women’s health movement and to second-wave feminism more broadly, grounded in the belief that knowledge was a precondition for enacting social change. “The whole feminist health movement was trying to change the social context of women’s health, [and] the structural conditions that influence health,” says Clement.

While it may seem like we are lightyears away from people not knowing what their own vulvas look like, as I peruse archival copies of the magazine over 30 years later, I am struck by how many articles overlap with current hot-button topics. The desire to balance “expert” medical opinion with the layperson’s experiences, the critical questioning of controversial pharmaceutical solutions, the attention to broader social, economic, and political conditions: it’s all in those pages, and it can be bittersweet to see how many issues are still relevant today, a testament to how slow progress can be in these contexts, and how easy it can be to roll it back, especially when we forget what has come before us.

*

I came of age in the 2000s, long after the era of the Women Healthsharings and vagina colouring books of women’s lib. I instinctively shied away from the diet-centric, fatphobic content in teen girl magazines. Thankfully for me, there was an entire ecosystem of feminist writing I could turn to online which shared both individual women’s experiences and fact-based reporting on our health. From blogging platforms Tumblr and LiveJournal to linchpin publications Bitch and Jezebel to private and semi-private groups of people with the same issues, for a while it seemed like the Internet could deliver on the promise of creating networks of knowledge in ways that mattered, filling the gaps where traditional media failed.

But by the time I was doing a deep dive on LEEPs, the online landscape had transformed entirely—in no small part because of social media, especially TikTok. The short-video sharing platform has become a major source for health information, especially for young women. In 2024, a survey study in the journal JMIR Infodemiology found a majority of U.S. women between 18 and 29 used TikTok for health information. Users post about vaginismus, birth control, orgasms, squirting, perimenopause, endometriosis, fibroids: I could go on. Some of these videos are created by health professionals, but many AFAB people post in the spirit of helping others through sharing their own experiences.

When I type in “birth control” on TikTok, the results are as follows: a “wellness”-focused woman encouraging natural planning, i.e. tracking your menstrual cycle to understand when you might be ovulating; a self-described nutrition coach listing ways the pill supposedly “robs us of our health;” and a sex educator responding to a question about birth control that doesn’t involve hormones.

In some ways, this knowledge ecosystem seems like an outcrop of the activist efforts of yore, grounded in information-sharing between peers and often using the language of increased bodily autonomy. Topics like hormonal birth control’s effects on the body are sometimes grounded in
legitimate concerns. Although these contraceptives are both considered safe overall and highly effective at preventing pregnancy, rare life-threatening complications can occur. There is research investigating the link between birth control and chronic inflammation that can lead to cardiovascular problems, blood clots, and mood disorders. Meanwhile, for methods like intrauterine devices (IUDs), for example, some report extreme pain during insertion, feeding into concerns that women and AFAB people’s pain is being dismissed by health-care providers.

More problematically, however, discussion online about birth control can quickly veer into right-wing misinformation territory, inflaming fears in an effort to get people to abandon contraceptive use altogether.

And in countries like a post-Roe U.S., where some states are increasingly implementing restrictive abortion laws, the stakes of an unwanted pregnancy can be high, says Dr. Jenny Wu. Wu is a medical resident in the department of obstetrics and gynecology at Duke’s School of Medicine; she studies women’s reproductive health information shared on TikTok.

“It’s a complex conversation to navigate with my patients, when they tell me they don’t want hormonal birth control and they want to do natural family planning in a state where we have limited abortion access,” shares Wu from her home in North Carolina, which in 2023 banned abortions after 12 weeks with limited exceptions. (Both surgical and medication abortion is legal in Canada and free to those with access to territorial or provincial health care.)

Wu says the level of misinformation propagated online about reproductive health is contributing to increased levels of distrust from her patients overall. This climate makes it more difficult for Wu and other doctors to have these conversations about proper gynecological care, but it also can mean people don’t go see her at all, don’t receive proper care, don’t get the contraceptives they need or access to screening tests to detect potentially life-threatening diseases. But mistrust of the health-care system, especially for at-risk populations, is nothing new.

*

Underlying the relatively recent phenomenon of online misinformation is the much longer, checkered history of gynecological medicine. In Canada, abusive medical practices like the forced sterilization of Indigenous women are ongoing. Meanwhile, many AFAB people and racialized people feel their symptoms are routinely downplayed or dismissed by health-care providers. It’s not hard to understand why some people would want to avoid the medical system altogether.

Tracey Lindeman is a longtime Canadian journalist and author of BLEED: Destroying Myths and Misogyny in Endometriosis Care. Endometriosis, in which tissue similar to the lining of the uterus grows elsewhere in the body, is notoriously under-researched, misunderstood, and underdiagnosed, which can lead to years of pain and suffering for those living with the condition.

“Endo is a super lonely disease, because you just feel like no one can really understand you and how much pain you’re in,” Lindeman, who lives with endometriosis, shares. For endo patients, frustrating repeated encounters with the medical system can feel more like gaslighting than care. In BLEED, Lindeman writes about asking her boyfriend to write a letter confirming that they didn’t want children in order for her request for a hysterectomy to be taken seriously. Another woman she speaks to experiences a pelvic exam so rough she files a sexual assault complaint; others still are denied referrals to a specialist or have their requests for pain relief dismissed.

Online groups can be a boon to these patients. There are thriving communities, like Nancy’s Nook Endometriosis Education on Facebook, with roughly 213,000 members, that offer a network of information and crucial support—and, just as importantly, the knowledge that those going through this are not alone.

But health influencers hawking cures of dubious provenance and efficaciousness feed off the need of those who turn to the Internet to self-manage their health. Much of the content paints itself as “natural,” implying it is better than “chemical” remedies. Looking up videos about LEEPs, I immediately stumble upon an account that is selling a course on how to “naturally” clear human papillomavirus, which can cause cervical cancer. Another “plant-based health” account shares a video about how “chemicals” cause endometriosis and that you can heal it without hormonal or surgical intervention. These accounts are selling supplements, creams, and cycle trackers, all ways to supposedly take control of your own health or body.

Many of these solutions are obviously farfetched; others have a “science-y” veneer of plausibility about them. But for those people who have been ignored, traumatized, or abandoned altogether by formalized health care, these options may feel like the only solution.

“[The wellness industrial complex] is capitalizing on desperation,” says Lindeman. “People are desperate for help, they’re desperate for answers, and they’re not getting that help, and they’re not getting those answers the conventional way, and so they become really vulnerable to online influencers and online [gynecologists] who are proposing information that lets them maybe try to manage it themselves.”

Enduring racism and sexism in the health-care sector; traumatic personal experiences when seeking treatment; the explosion of influencers promising to help reclaim power over your own body: these all feed into one another so that AFAB people delay the treatment they need, suffer needlessly, and even die younger. We need ways to circulate accessible, evidence-based information, both from other women and AFAB people and medical professionals, which build momentum to tackle these much larger problems together, instead of isolating us even further.

*

A year after my diagnosis, I sat in a Montreal-area hospital, clad in a medical gown and socks, clutching a small piece of yellow paper. I didn’t feel like I had all the information I needed to make a decision about whether to have the LEEP, so I had scribbled down a list of questions for my doctor.

But I was called into the OR with no chance to speak to the doctor beforehand. Instead, I was ushered onto the operating table. As he applied local anesthetic to my cervix and inserted the wire into my vaginal canal, I asked him: “So… should I be worried about any sexual side effects?”

“No, no, I have never heard of this,” he replied.

With the loop still inside me, he rattled off what to expect post-surgery. In a daze, I heard the words “heavy bleeding.” “So a lot of bleeding afterwards is normal?” I asked. “No! Go to the ER if you start bleeding,” he repeated.

The whole thing was over in a matter of minutes. I stumbled off, the yellow paper crumpled and unused.

For a long time after the procedure, I felt confused and irritated at myself for not being a better self-advocate. I could have refused to undergo the procedure if I wasn’t satisfied with the level of information I had been provided. Why hadn’t I been able to say what was on my mind?

Sharing my story helped, because I started to realize just how common LEEPs were. It helped assuage my fears that I was necessarily on the road to cervical cancer. Reading accounts like those from Lindeman, who experiences doctor anxiety after a lifetime of poor medical encounters, helped reassure me that I wasn’t alone.

Is sharing stories online enough to take control of our health? In some ways, yes. The Internet has become a lifeline for many Americans seeking medication abortions. Lindeman says journalists pay attention to what is being said online and amplify concerns to a wider audience.

Meanwhile, after finding that the majority of videos about IUDs on TikTok mentioned pain, Wu shifted the way she practices: “I [now] offer patients something for pain before any IUD placement and really before any gynecological procedure.” In 2024, the Centers for Disease Control and Prevention, the United States’ public health agency, even updated its recommendations for IUD insertions to include discussions of pain management.

And in 2023, a year after my own LEEP, a study in The Journal of Sexual Medicine was published exploring healthcare providers’ limited knowledge of post-LEEP sexual dysfunction and the resources patients used to cope—potentially the first ever study to look at the difference in patient and health-care provider perspectives when it comes to LEEP treatment. It found that there was “misalignment” between the two and recommended not only further research into sexual dysfunction symptoms, but also better education and training for providers, and better support for patients who do have negative outcomes.

These are heartening indications that when you share your health experiences, people are listening. The question remains: how do we translate these types of discussions into improving health outcomes for all AFAB people—especially when research into health problems that affect us is still underfunded?

It starts with finding ways to pair networked knowledge with collective action, because the power of social media is ultimately limited. “It’s the personalization of systemic problems,” points out Lindeman. “[You’re] continuing to focus on what you can do as an individual, instead of attacking the systems that are responsible for such a deficit in care.”

Social media may give us the reassuring impression of solidarity. In reality, it is atomizing, incentivizing a competitive attention economy; a billion voices speaking over, but not always to, one another. The collectives of the women’s health movement knew that to build power, you must do it together, through communities of care.

Perhaps we have to start by relearning that lesson–even if it means tearing ourselves away from our phones.

Photo by IMAGINIMA

“It was just something to do…like getting your hair braided,” says Kayowe Mune, describing the mindset held by many communities about female genital mutilation/cutting (FGM/C).

Mune, now 42, is a content creator based in Toronto and was cut when she was six years old, as part of what’s known as vacation cutting, which often happens during the summer when school is out. Mune was born in Somalia and was living in Saudi Arabia with her parents at the time. While spending the summer at her grandmother’s house back in Somalia, Mune was taken to a hospital to be cut. Since her cousins were already going, her grandmother added Mune to the group, accompanied by her aunt.

“It wasn’t like the village lady…shrouded in scars came with a…razor,” says Mune. She explains that she was taken to a “really nice” hospital, where a lineup of other girls also sat waiting for their turn. While the hospital may have been welcoming, the procedure was done without anesthesia.

“I remember sitting outside waiting for [my] turn, and that part was pretty scary because you can hear them screaming,” Mune says. In the days that followed, all that Mune recalls is feeling dissociated from her body.

A tradition in many African cultures, FGM/C is viewed as a way to protect a girl’s chastity and ensure that she gets a good husband, explains Mune. Older generations often don’t see anything wrong with the practice and it’s frequently equated to male circumcision, which isn’t comparable at all, according to Giselle Portenier, co-chair of the End FGM Canada Network. Portenier, who is also a journalist, learned about the abuse of women’s human rights through her documentary work. She co-founded the End FGM Canada Network after realizing how big and under-reported an issue this is in Canada. Portenier explains that the equivalent of this kind of genital mutilation/cutting performed on males would consist of cutting off the head of their penis.

“There is no comparison,” she says.

*

Female genital mutilation/cutting is classified into four types, per the World Health Organization. Type I, also known as a clitoredectomy, involves the partial or total removal of the visible part of the clitoris and/or the prepuce/ clitoral hood, which is a fold of skin surrounding the clitoris. Type II, also known as an excision, is the partial or total removal of the visible part of the clitoris and the labia minora, the inner folds of the vulva, with or without the removal of the labia majora, the outer folds of the skin of the vulva. Type III, also known as infibulation, involves the narrowing of the vaginal opening through the creation of a covering seal. The seal is formed by cutting and repositioning the labia minora, or labia majora, sometimes through stitching, with or without removal of the clitoral prepuce/clitoral hood and glans. Type IV includes all other harmful procedures to the female genitalia for non-medical purposes, such as pricking, piercing, incising, scraping and cauterizing the genital area.

FGM/C is not something that affects only those in African countries. While there’s no official study detailing the prevalence of FGM/C in Canada, vacation cutting affects survivors living in Western countries, too. It is practiced and/or affects those living in 92 countries across every continent but Antarctica, and this number is only growing as more survivors are discovered.

Often, girls who are born in Canada are taken to their parents’ home country, usually in African nations such as Somalia or Egypt, to be cut and then brought back home to Canada. In other cases, such as Mune’s, girls immigrate to Canada with their families having already experienced FGM/C. This happens despite the fact that female genital mutilation has been identified as a form of aggravated assault in Canada’s Criminal Code since 1997, a move the Department of Justice says was made in keeping with Canada’s commitment to support the 1993 United Nations Declaration on the Elimination of Violence against Women, the United Nations Convention on the Rights of the Child, and the 1995 Platform for Action of the Fourth World Conference on Women. These recognized that violence against women, including FGM/C, violates their human rights and fundamental freedoms.

Still, according to Portenier, there are over 100,000 survivors of FGM/C in Canada and thousands of girls at risk. This figure is based on End FGM Canada’s analysis of immigration from 29 FGM/C practicing countries in the Middle East and Africa as reported in the 2011 Canadian Census. Yet, “there [is little support] for them in Canada, largely because there is a culture of silence and silencing about this issue here,” says Portenier.

The silence is often due to a fear of causing offence around other people’s traditions. In May 2023, a daycare worker alleged that a two-year-old child’s genitals had been mutilated and alerted Quebec’s youth protection services, which reportedly replied that the case was too delicate for the agency to handle. (The child was later examined by a doctor, and the case has since been declared unfounded.) In response to This Magazine, Quebec’s Human Rights Commission refused to comment as this case involved a minor.

Canada is also the only Western country, besides New Zealand, lacking in official statistics on FGM/C, according to a 2020 report by Equality Now, a human rights association dedicated to the welfare of women and girls. “Efforts to get statistics and be [funded] by the Canadian government on statistical analyses have failed on several occasions,” says Portenier. While the government has attempted to calculate estimates, their most recent September 2023 report still states that “the results should not be interpreted as official estimates of FGM/C in Canada.”

Despite the failure of the federal government, last year Alberta was the first and only province to date to pass a bill strengthening existing laws that ban female genital mutilation in the province. The bill states that health professionals who practice or facilitate FGM/C in the province will be removed from practice if convicted. Additionally, those convicted in other jurisdictions will not be permitted to practice in Alberta.

When asked how things can be improved for survivors in Canada and those who are sent for vacation cutting, Women and Gender Equality Canada stated that they strongly condemn FGM/C and under the federal Gender- Based Violence Strategy they “provide funding to various community-based initiatives that address FGM/C nationally” and will “continue to work together with [their] provincial and territorial counterparts as well as with academics and service providers to ensure a multidisciplinary approach so that impacted women and girls have access to culturally safe services.”

While there are federal as well as provincial plans in place to address FGM/C, not a single prosecution has occurred since the 1997 criminalization of FGM/C in Canada. According to Global News, a leaked border services report in 2017 also showed that FGM/C practitioners were entering Canada to carry out the procedure. The lack of prosecutions in Canada come as a shock when in comparison, the U.S., the U.K., France, and Australia have all prosecuted cases of FGM/C.

*

Since FGM/C is generally performed without anesthesia, the first immediate side effect is the intense pain. Bleeding occurs and scar tissue forms over time in most cases of cutting. Depending on the type, menstruating and urinating can be difficult and cause pain, as can childbirth and intercourse. Female sexual pleasure is hardly taken into consideration, but this is also compromised.

Depression, PTSD, and anxiety are just a few of the psychological effects of FGM/C. Others include not being able to do things a child normally does, recalls Mune. “When you’re cut, they don’t want you to learn how to ride a bike because you can open up your stitches.” Sports were out of the question for girls, but Mune was able to rebel when she moved to Toronto and signed up for her school’s athletics program.

While immigrating to Canada helped Mune escape some of the cultural restrictions imposed on girls, she and many other survivors faced, and continue to face, a whole other set of challenges here.

“I would say white Canadian doctors are not educated, and a lot of them don’t care, especially the males,” says Mune, speaking about her experience with the Canadian health-care system. Mune has found compassionate care with doctors who are primarily women of colour, but other challenges persist. With staff shortages, difficulty in getting appointments, and medical professionals’ generally busy schedules, awareness and empathy have been hard to come by for Mune.

Over time Mune has gotten better at advocating for herself, but she wishes there was a way for doctors and gynecologists to know that they are seeing a survivor of FGM before they enter the examination room. “I think… it should be highlighted, like every [appointment] that this person is a survivor of genital mutilation…before [the healthcare provider] sees [the patient],” says Mune.

Organizations like End FGM Canada are working to create more awareness around the practice in Canada. Initiatives include educational modules designed for health-care professionals and child-protection workers. A special module for teachers is set to release in November 2023. They also created “Miss Klitty,” a campaign that promotes education about the clitoris. In the vast majority of cases of FGM/C, the clitoris is harmed. This is often due to the belief held by many practicing cultures that the clitoris is evil, explains Portenier. Thus, “Miss Klitty” was created as a way to demystify the clitoris and get people talking.

One option for those who have experienced FGM/C is reconstructive surgery. Dr. Angela Deane, an obstetrician/gynecologist at North York General Hospital and the University of Toronto, focuses on clitoral reconstruction. Deane sees up to five patients per month for consultations regarding potential treatments. She explains that in some types of cutting the clitoral glans is removed, which is the very visible tip on the vulva.

“What we can do is release more clitoral tissue from beneath all that and bring that forward to the outside. And having that new clitoral tissue on the outside is like a creation of a new gland,” says Deane. This new gland can then offer more sensation. Surgery can also include removal of a cyst or scar tissue, as well as defibulation. Depending on the impacts of FGM/C, an individualized care plan is recommended which can be non-surgical and include medications or therapy to address pain or scar tissue. Often, recommendations also include seeking mental health support, sex therapy, and physiotherapy.

Mune says one step forward is to make therapy or counselling free of cost for survivors. “It used to be hard for me… when I was younger to afford [therapy]… and I knew I needed it,” she says.

Mune also emphasizes the importance of education and a present father in a young girl’s life. Her parents were unaware of her being cut and they never would have supported it had they known. Even today, she knows Somalian families where daughters with present fathers have never heard of FGM/C, while other families send their daughters to be cut without the father’s knowledge. That’s not to say the women and other men of the families are deliberately trying to hurt their daughters, Mune underlines. “They’re not monsters…they’re doing this out of love…It’s just an old, very ancient procedure that needs to go away, and it just won’t go away.”

Anecdotal statements from Mune, other survivors and wider diaspora communities suggest that FGM/C is still a problem and while global efforts from the United Nations have been helpful, change has been slow due to its secretive nature. What sets Canada apart from other Western countries is the lack of statistics on FGM/C and its implications here.

In order to prevent vacation cutting in Canada, a first step would be to fund a project on obtaining proper statistics. Efforts at all levels of government also need to be placed on genuinely communicating with members of communities and working together to eradicate this practice from Canada rather than being afraid of offending people.

Providing coverage for reconstructive surgery under provincial health policies would also help. In Ontario, for example, coverage varies depending on a person’s needs, and clitoral reconstruction is not fully funded. Finally, law enforcement and the legal system also need to work on prosecuting cases of FGM/C, as done by most other Western countries. Canada’s culture of silence can no longer afford to continue to perpetuate this abuse.

Illustration by Matt Daley.

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.

Canadian women have fewer options than their counterparts abroad when it comes to birth control choices. Creative Commons photo by Flickr user vociferous.

Sitting up on the examination table, I can hear my sterile paper gown crinkling with every movement. The gynecologist sits a few feet away, looking up at me, and I feel like a stage performer as I explain the reason for my visit. “I’ve tried and hated almost every type of hormonal birth control,” I tell her. “I want to know about non-hormonal options.” She nods when I reveal I’m in a long-term, monogamous relationship; she tenses up when I say I’m interested in an IUD or a diaphragm.

My request was uncommon. Hormonal contraception is the unequivocal norm for most young Canadian women, and research for other options is virtually non-existent in this country. Birth control is low on the health agenda, and this oversight is putting Canadian women at risk.

In the last decade, I’ve sampled nearly ten kinds of hormonal contraception. By the age of 19, I had tried five different types of oral contraceptive. Puberty came with a prescription for the pill to help control heavy periods. In university, hormonal contraception threw me into an emotional frenzy. Going from the pill to the Depo-Provera injection to the Nuva Ring, I experienced symptoms that included an obsession with my weight, loss of my sex drive and intense mood swings. As a responsible young adult in long-term relationship, I was a good candidate for a vaginal barrier method or an intrauterine device (IUD), but I was unaware of those options and they were never mentioned. Campus physicians continued to advocate hormonal methods, convinced they could find “the right match.” Still, my body was completely uncooperative. I assumed I was the problem.

My latest attempt, a consultation with a gyno, earned me a prescription for a diaphragm. After trying more than a dozen pharmacies, I discovered that diaphragms are nearly non-existent in Canada. A call to the manufacturer revealed that in 2010, less than 100 devices were distributed across the country.

Finally turning online, research led me to the FemCap, a highly recommended new version of the cervical cap. An American product, it’s said to be comfortable, reusable, purchasable online and most importantly, hormone-free. I included the recommended organic spermicide with my order, because it’s not available in Canadian pharmacies.

When my gadget came in the mail, my boyfriend and I watched the unintentionally hilarious instructional video, which features a real vagina and animated sperm whose mission to fertilize is thwarted by the FemCap. To be sure, I ran the device by my family doctor. She’d never even heard of it, but she was enthusiastic. After giving it her seal of approval, she asked to keep the instructional pamphlets I brought in.

Advancement in non-hormonal birth control is not a popular field of research and statistics show Canadians are particularly unaware. The United Nations’ 2009 report on contraceptive use says the world’s most popular form of reversible birth control is the IUD. This is the method of choice for 14 per cent of the world’s women. While the report shows the pill is the most popular option for most developed countries, on the global scale only nine per cent of women rely on it. In Canada, one in every five women uses oral contraceptives. The condom is second in popularity with 15 per cent, followed by traditional techniques like the rhythm method at nine per cent. The IUD and vaginal barrier methods (including the diaphragm and the FemCap) are each used by only one per cent of women. In contrast, a whopping 13.5 per cent of European women report using an IUD and 14 per cent rely on natural family planning.

So why are Canadian women so dependent on hormones?

Cindy Weeds, the coordinator of women’s programming at Planned Parenthood Toronto, explains that North American women have normalized the consumption of hormonal birth control. “Often we see women who come in and all they know about is the pill,” she says. Whether this is the cause or the effect of the current contraceptive landscape is difficult to say. Proliferation of hormonal methods is cyclical: as these contraceptives become more accepted, the industry becomes more profitable and advertising increases. This ensures the products stay on the radar and gain approval, re-launching the cycle. “Certain kinds of pills are really heavily marketed, particularly to young women,” says Weeds.

One of the consequences of this consumption cycle is a decrease in demand for non-hormonal products, reducing their supply and leading to a dearth of available information.

Fear of pregnancy is also a consideration. The pill boasts a 99.9 per cent rate of effectiveness, while the diaphragm has a failure rate between four and eight per cent, a margin of error too risky for many.

In Canada, advancements in the study of contraception are not a priority: little research is done to develop any new methods of birth control, let alone non-hormonal alternatives. Since 2008, the Canadian Institute of Health Research has spent $916,226 on birth control-related research, none devoted to new developments. In contrast, research devoted to pregnancy and conception received more than $20 million in funding, 22 times the amount allocated to birth control. And for example, while $14,000 was given to a British Columbia conference focused on sexual health education, $20,000 was allocated to finance events honouring the oral contraceptive’s 50th anniversary.

Women will often accept the side-effects of hormonal birth control because their fear of conceiving is so great. But, as Amy Sedgwick, owner of Toronto sex and health store the Red Tent Sisters, says, “there’s really no other comparable situation where millions of healthy people are taking a daily drug.” Numerous studies warn of the effects of hormonal contraception. The pill is said to impair muscle gain and increase women’s risk of heart attack, stroke and cervical cancer. Studies have also shown that women who use hormonal contraception are more susceptible to mood disorders and sexual dysfunction, and prolonged use of Depo-Provera, the hormonal injection, has been linked to bone-density loss.

Birth control has been lauded as a bastion of feminist liberation and empowerment, but our dependence on hormonal methods is worrisome. As women wait longer than ever to have children, they are relying on these drugs and devices for increasing periods of time, sometimes decades. Considering the volume of research revealing frightening long-term effects, hormonal birth control should be dispensed with a plan and a well-thought-out exit strategy. Most importantly, non-hormonal alternatives should be discussed, and used, in Canada.

Hormonal birth control disconnected me from my body and made me feel uncertain about my wellbeing. Using the FemCap has kept my health and sanity intact, and disturbing instructional video aside, my partner is a big fan. Just don’t make him watch it again.

Safe, affordable midwives are in demand, but a lack of education and funding forces healthy mothers into hospitals. Creative Commons Photo by Dave Haygarth.

It wasn’t until the early 1900s that it became “normal” to have a baby under the watch of an obstetrician in a hospital. But over the last few decades, childbirth has become an increasingly complicated, medicalized affair, with more inductions, surgeries, and drugs than ever before. The advancements have saved many otherwise dangerous deliveries, but it can also traumatize healthy mothers who would otherwise be fine on their own. Cesarean sections are increasingly common, for instance: Canada’s current C-section rate is 28 percent. The World Health Organization says it should be closer to 15.

Modern hospital-based childbirth, says Tonia Occhionero, Executive Director of the Canadian Association of Midwives, could result in a “cascade of interventions.” Sometimes there’s a temptation to use every tool available, even if that’s not always the best option. An unnecessary induction of labour, for example, can produce a snowball effect, with medical interventions accumulating, quickly complicating low-risk births into higher-risk ones.

According to the Canadian Association of Midwives, 70 to 80 percent of women could deliver on their own without complications and would therefore benefit from midwife supervised delivery at home, in a special birthing centre (only in Quebec) or even at a hospital. But health-care providers have been slow on the uptake.

“There are a lot of misconceptions about what a midwife is,” says Occhionero. “But how can we expect the general public to understand when midwifery still manages to be left out of Health Canada’s literature?”

But even without promotion of midwifery, more women are rejecting the assembly-line hospital birth—demand for midwives far outruns supply. There are only 850 midwives across Canada, 435 of whom are in Ontario, the first province where the profession was regulated in 1994. Ten percent of Ontario births are attended by midwife—but 40 percent of women who request a midwife cannot get one. With only six university programs offering certification, the shortage persists.

Occhionero says that situation will continue this way until schools add midwife training, which despite its earth-mother reputation is a highly professionalized four-year baccalaureate degree.

“It’s very regulated,” says Occhionero. “Not just anybody goes around catching babies.”

Illustration by Dave Donald.

It’s just another September day in Nova Scotia—sun shining, birds chirping, a late summer breeze playing in the treetops. Only one thing is different today for Shawna Young: she is pregnant. This one fact makes the sunshine seem a little brighter, the birds’ songs just for her. It’s like carrying around a secret, a secret that makes her smile at strangers and hold her head a little higher. Just yesterday, Shawna and

her husband, Benjie, put their one-bedroom house on the market, already full throttle into planning their lives for their little one. They’d dreamed of moving into a bigger, more family-friendly home when the time came; now, it was finally here. Today, Shawna is on her way to the doctor for her 13-week ultrasound. She knows exactly what to expect: the doctor will say she’s 12 weeks and six days pregnant, and she and Benjie will get to see the little hands and feet of their miracle baby.

But something feels wrong when she lies back in the chair, looking at the ultrasound image up on the screen. There is no movement. She tries to convince herself that everything is fine, even though a nagging feeling in the pit of her stomach suggests otherwise. The nurse’s words come like a blow to the head.

“Well, you’re not 12 weeks and six days.”

“Oh, is the baby measuring a bit small?” Shawna asks, looking helplessly at the blob on the screen.

“I’m sorry,” replies the nurse. “I have no good news for you today.”

When Shawna repeats the nurse’s words to me on the phone from her home in Halifax, I hear her voice crack, and I know it’s not the quality of the connection. For any woman who has miscarried, the emotional devastation is something that lingers long after the event has passed. But for a woman who has had fertility problems and struggled through years of tests, medications, alternative treatments, and thousands of dollars in debt, the devastation is that much harder to bear.

A few days after finding out she had miscarried, Shawna went in for her scheduled “D & C”—dilatation and curettage—which refers to the widening of the cervix so a doctor can scrape tissue from inside the uterus; in this case, excess tissue resulting from the miscarriage.

“I had the distinct feeling we were going to a funeral,” she says of the drive to the hospital. “After a morning of meeting with doctors, nurses, intake people, seemingly half the people who worked in the hospital, I was taken into the operating room. I walked in and climbed up on the table. I extended one arm out straight so they could put the IV in, but they couldn’t get it in, so they had to try the other arm. So I was lying there with my legs in stirrups and both arms extended out and very bright lights shining on me. The operating room itself and the procedure to that point reminded me very much of my egg retrieval for the in vitro fertilization, and as I lay there, the tears just started streaming down my face. I couldn’t wipe them away because both of my arms were extended and being worked on. I felt so alone and such complete and total sorrow. I didn’t fight the feeling, though; I just let myself feel what I felt and grieved for the baby I was about to lose. I was not only mourning the loss of our baby, but I was really grieving for my fertility.”

At 37, Shawna was on her second in vitro fertilization treatment after a year and a half of trying to conceive naturally. The decision put her and Benjie in debt more than $20,000. A single round of IVF can cost up to $10,000, which includes costs other than the procedure fee—women also pay for the drugs they need to inject themselves with in preparation for the procedure, and these can cost as much as $5,000. IVF is currently not covered by the provincial health-care system in Nova Scotia or most provinces in Canada. In Ontario, it is funded only for women with blocked fallopian tubes—no more than 20 percent of infertility cases. Last summer, Quebec became the first Canadian province to bring IVF under its provincial health plan when it passed Bill 26, which allows funding for up to three IVF treatments for women having difficulty conceiving. Outside Quebec, IVF remains a private medical cost in most cases.

IVF involves fertilizing an egg with sperm outside the uterus. It falls under the umbrella of Assisted Reproductive Technologies (ARTs), which emerged in the late 1970s, with the first Canadian fertility clinic opening in 1983. IVF is the most effective ART: with each cycle of treatment, it’s successful 38 percent of the time for women under 35; for women aged 35 to 39, it’s successful 28 percent of the time; starting at age 40, success rates drop to 11 percent. According to the Canadian Fertility and Andrology Society (CFAS), these rates have increased by 10 percent over the last decade.

The causes of infertility are numerous, and doctors usually look at lifestyle factors first—smoking, alcohol, and drug use all inhibit fertility. But the biggest cause of infertility in both men and women is unknown, and the most common type of infertility is unexplained—doctors simply find no reason why a woman cannot conceive naturally; everything seems to be medically normal, but it’s just not happening. In Ontario, infertility is known to occur in one in six couples, and in 2008, the CFAS reported a combined total of almost 10,000 IVF procedures performed in the 28 clinics across the country. However, although it is the most effective treatment, IVF is usually not the first procedure that couples attempt.

According to Dr. Keith Jarvi, director of the Murray Koffler Urologic Wellness Centre and head of urology at Mount Sinai Hospital in Toronto, doctors often try to increase ovulation in women and the number of eggs they produce during ovulation. This is done through stimulation medications that women take for a period of time prior to the procedure, so the sperm have more targets to aim for. If the process, known as Intrauterine Insemination, fails more than once or twice, the next step may be the use of IVF.

“We take the eggs out, take the sperm out, and incubate them together in a dish,” says Jarvi. Once the eggs are fertilized, the doctors take as many embryos as they feel are necessary for optimal chances of conceiving and return them back to the woman’s uterus. If IVF doesn’t work this way, doctors perform Intracytoplasmic Sperm Injection as part of the procedure. “[With ICSI], you can take the sperm and bring it closer to its targets,” Jarvi explains. To do this, doctors take a single sperm and inject it into a single egg, (after they have been extracted from the couple), and then place the fertilized embryo back into the woman’s uterus.

The costs of these procedures ranges anywhere from $5,000 to $8,000 each, not including the cost of the drugs women may need to take at the same time. “And you’re probably going to end up doing it two or three times,” says Jarvi. “You could easily spend a compact car’s worth of money on it. It’s not Lamborghini kind of money, but still, it’s a lot of money.” The huge expense adds a financial burden to the already high emotional cost of infertility, says Shawna. “It is really unfortunate that [the decision to do IVF] has to be a financial decision.”

Beyond the financial or emotional considerations, IVF also has implications for the health-care system. Such procedures result in a high number of multiple births, for one; because IVF costs so much, doctors transfer more than one embryo at a time to increase the chances of one coming to term. Multiple births suffer more complications, and it costs the health-care system a lot to care for them. Many doctors say these multiple births end up costing the government more than publicly funding IVF treatments mandating a single embryo transfer would.

As birth rates continue to drop, many advocates, patients, and doctors alike say that provincial governments need to recognize that these procedures inflict high costs on individuals—emotionally and financially—and additional economic costs on the public healthcare system. The solution, they say, is to make IVF a publicly funded treatment.

Most women spend a great deal of their lives trying to avoid pregnancy. We are taught to practise safer sex and use condoms and go on birth control. We do these things until we want to start a family, and it’s easy to assume that as soon as birth control stops, a pregnancy will occur. We’re conditioned to expect the process to happen naturally, like turning on a light switch. And when it doesn’t, we feel frustrated, angry, and confused.

“You feel at fault because you can’t do something that comes so naturally to everybody else,” says 39-year-old Charmaine Graham, of London, Ont., who has been through 11 IVF treatments. “You’re faced with people who are parenting children and they’re going through [general] parenting angst—they’re frustrated, they’re tired, they yell, they snap—and you just would do anything for that opportunity. I just wanted to go to the grocery store with a baby like everybody else.”

Graham says infertility can be an intensely isolating experience. Not only do women feel like outsiders for not being able to do something natural—and, arguably, what many women may feel is their unique duty—but they are further isolated by constant reminders of their failure.

“No matter where you go, every single person that you meet came from somebody’s womb. That is what we do as a human species—we procreate. And so there’s no way ever to escape that,” she says. “You have a lot of feelings that are paradoxical. You’re really happy for your sister when she gets pregnant, but you also want to smash her head up against the bathtub because you can’t. It’s very hard to live with those feelings all the time.” Of Graham’s IVF treatments four were fresh, and seven were frozen (frozen fertilized eggs are stored in case a fresh treatment fails, which is less expensive than starting again with another fresh treatment). While her husband, Jim, believes the experience ultimately brought them closer, Graham remembers how taxing the treatments were on their marriage at the time.

“You have to deal with the anger and frustration you might have with your partner as a result of them being infertile, or the guilt that you feel for being infertile. And then I have to make this man who loves me live with me when I’m fucking insane going through hormone treatments,” she says. “Women become so focused on just getting pregnant, it doesn’t even become about parenting anymore. Men don’t feel that they’re married to the woman they got married to. Something has hijacked their marriage entirely.”

This is one of the most compelling things about the struggle of infertility: it affects men and women very differently. Even if a man is the one with the issue, the procedure is still done on the woman because she is the child-bearer. “They’re the ones who have to do most of the drugs, they have to do most of the invasive technologies. They’re the ones being poked and prodded,” says Graham. “A man has to masturbate to get his sperm out. A woman has to have a probe put in her vagina, with a 22-gauge needle that goes through the side of her vagina into her ovaries to withdraw the eggs. I think it’s a very separating experience for most men and women.”

Other women agree with Graham that the reminders of what they can’t do never seem to cease. Some describe difficulty attending baby showers, seeing mothers with their children in the grocery store, and even walking by the Santa Claus display in malls around Christmas. And with all of these difficult feelings comes the worst part: paying out of pocket for a procedure that is not even guaranteed to work. No one knows that better than Kerri-Lyn Jessop, 37, of Caledon, Ont., whose three IVF treatments over two years have put her more than $30,000 in debt. “Unless you’re rich, that’s a lot of money to spend to find out an answer to one question,” she says. But it’s not enough to make her want to stop trying.

“Emotionally and physically, I’m not ready to give up, but there’s only so much money in the pot.”

Cheryl Dancey, 41, of London, Ont. agrees. She had 18 IUIs and four IVF treatments, none of which were successful. “As hard as everything else is, it’s not enough to stop you from doing it again. Money is the only thing that can make you not go on.” (Since our original interview, Dancey was able to give birth to a baby girl with the help of a donor embryo.)

Dancey says if IVF was publicly funded, half the burden of the experience would be gone. “It would take all that pressure completely away,” she says. “You wouldn’t have to worry, ‘Well, if I do it, we’re not going to have the house to put the kid in.’”

Many couples struggling with infertility turn to family and friends for financial help to pay for IVF treatments, which brings up the arduous task of explaining their situation to loved ones—something that can be very difficult to do.

“People don’t believe that it’s real,” Dancey says. “They say, ‘You’re not doing it right. All you have to do is relax. So-and-so’s brother’s cousin’s wife did this and she was fine.’ People just don’t get it. Everybody’s got some stupid story that somebody that they’ve known through the grapevine relaxed, or drank a certain tea, and that’s what will fix the problem.”

“The other thing that people also do all the time is that they stop talking to you,” says Graham. “I worked at the university and I was always very open about my situation. So, I’d go missing for a few weeks and I’d come back to work and people would say, ‘Where have you been?’ and I’d be like, ‘Making babies in a petri dish.’ And so everybody knew what I was going through. And then one of them would get pregnant and she wouldn’t come to my office for nine months.”

If IVF were publicly funded, couples could go ahead with treatments privately. They would also be spared having to deal with the naysayers who think seeking such treatment is selfish.

“By the time the government decides—if they ever decide—to fund this, it will be too late for us. My time will come and go by the time that it’s covered,” says Jessop. “We are speaking up for the next group of people that are coming into this. I don’t think I will ever benefit from [it], but I might be able to help somebody else benefit.”

The Ontario government established an expert panel in 2008 to take a closer look at ARTs, especially IVF, and whether it should be funded under the province’s health-care plan. It also examined adoption: its cost and its lengthy, complicated process. The panel released its recommendations this past August, which urged the government to institute a fertility education system, provide a funding strategy for IVF procedures, and make changes to the adoption process.

Dr. Jarvi provided expert advice to the panel, which also included Dr. Arthur Leader, a professor at the University of Ottawa and a partner at the Ottawa Fertility Centre. Both doctors agree that the most important public health reason to fund IVF is to limit the number of multiple births that result from multiple embryo transfers. Leader says that transferring multiple embryos is dangerous and more of a financial burden on the health-care system than IVF procedures would be.

“What the expert panel showed was that, by limiting the multiple birth rate in Ontario, you could save the taxpayer, over a 10-year period, half a billion dollars,” he said. “Twins are more likely to have medical or surgical needs in the first four months of life. The tremendous cost associated with having high rates of twins, never mind triplets, means that caring for them is actually costing the government more than it would have cost to fund IVF for single-embryo transfers.”

One of Leader’s patients became pregnant with twins through IVF. About halfway through the pregnancy, one of the twins died in utero as a result of a congenital heart defect. “It became a highrisk pregnancy,” says Leader’s patient, Kerri Stanford, who was 34 at the time. “We knew that one of the babies wasn’t doing well and was likely not going to make it. It just meant that the whole pregnancy was very complicated and it was watched in a high-risk unit.” Those high risks, of course, entailed high costs, exponentially more than a single healthy pregnancy would have. “Economically, there is a strong argument to be made to fund fertility services,” Leader says.

Leader has another reason he believes IVF should be added to provincial health-care plans: continuity of care for patients. “One of the paradoxes of infertility is that, in almost every province of the country, it’s medically necessary to do fertility testing in order to find out why people can’t get pregnant. In other words, the health plan pays for treatments to diagnose infertility. But once the diagnosis is made, the health plan abandons people, saying it’s not necessary to treat your problem. Then, once people get pregnant, the health plan says now it’s medically necessary to care for pregnant women. There’s a disconnect.”

Months after my first conversation with Shawna, I receive an email from her. “I should be 35 weeks pregnant now,” she writes, still lamenting her miscarriage. She goes on to tell me about one of the hardest parts of dealing with infertility: the public’s misconceptions about it.

“If I had a medical condition that prevented me from being able to walk,” she said, “and there was an effective medical treatment available, society wouldn’t question whether or not I should be able to access it. When someone is paralyzed, people think, ‘Oh my gosh, I could never imagine what that would be like.’ Nobody ever thinks, ‘What would my life be like if I didn’t have my fertility?’”

Advocates for IVF funding see it as positive that the Ontario government commissioned an expert panel to look at the issue, and Quebec’s new law is definitely a step forward. But it’s taking the rest of the country a while to catch up. Medical organizations have questioned Canada’s attitude toward funding, especially in comparison to other countries around the world, many of which do provide funding. Manitoba offers couples who have undergone treatment a tax credit for 40 percent of treatment costs. British Columbia now has the Hope Fertility Fund, which provides financial assistance to residents of the province who can’t afford treatment—commissioned by the UBC Centre for Reproductive Health, the Vancouver General Hospital, and the UBC Hospital Foundation, not by the government. The Nova Scotia government has previously deemed it not medically necessary to provide funding, and the rest of the country seems to agree.

Still, supporters remain hopeful. Beverly Hanck, executive director of the Infertility Awareness Association of Canada, believes all provinces will eventually cover treatment. “I suspect what’s going to happen, and this is my guess, is that they will put it on their platform for the next election,” says Hanck. “It’s a matter of time. But time is important for some of these couples.”

Time is indeed the enemy in the infertility battle. Women feel pressured by time because fertility decreases with age, and after an IVF treatment is performed, waiting to find out if they are pregnant can be excruciating. The burden of infertility is essentially a race against time. And so far, time is winning by a long shot.