There have been many times this past year when I thought I would bleed to death. After I got COVID-19 last August for the first time, my health took a nosedive. I knew that the vaccine could affect menstruation, because we covered the topic on The Agenda, but I didn’t know how getting COVID would affect my monthly cycle. I thought it was a coincidence. Some friends reminded me that it could be my age. I’m in my 40s — maybe it was a sign of entering perimenopause. After I bled for more than 50 days, my doctor referred me for an ultrasound, and the cause of my bleeding was identified. I had uterine fibroids. I would later find out that I also had adenomyosis.
Sharon Stone, Sara Bareilles, FKA Twigs, and Condoleezza Rice have all had fibroids and have spoken up about the negative impacts fibroids have had on their lives. While fibroids will affect 75 per cent to 80 per cent of women by age 50, Black women are more likely to get them. It’s not known what causes fibroids or how to prevent them. It’s incredible that something that affects most women is so little understood. On top of that, the treatment options can create negative ripple effects on the rest of the body.
I should know because, for the past year, I’ve been prescribed medication that put my body into menopause, medication that had warnings for liver failure, medication that was created to treat prostate cancer but is now used as a salve for fibroids. Nothing worked for me. In fact, I ended up feeling worse and developed migraines, body pains, and light sensitivity. The bleeding continued, and my anemia became worse.
After almost a year and half of emergency-room visits, iron infusions, internal exams, and biopsies, I am finally having my surgery — a surgery that was originally scheduled for January 2025, which would have meant a wait time of two years.
The one thing that is clear: I believe with my whole self that, had I not advocated for myself in a very public and loud way, I wouldn’t have gotten an earlier surgery date and would still be waiting until January 2025.
In fact, I’m writing this on November 30, the day before I go to the hospital for my surgery. This is a surgery some women have had to leave the country to get, paying thousands of dollars in order to get the help they needed because their doctor either wasn’t able or wasn’t willing to help them.
“I first had symptoms of endometriosis when I was 16, yet didn’t hear the word until I was 29 years old,” said Shannon Cohn, the director of Below the Belt, a documentary that tells the stories of those living with endometriosis and their fight to get the help they need. “So this yawning gap of 13 years of not being believed actually by health-care providers, being told my symptoms were in my head or part of being a woman, or I was exaggerating. All the things that now we — now the hot term is gaslighting — but that’s what happens.”
I believe her because, back in 2016, I had an ultrasound. I hadn’t felt like myself since giving birth to my second child, in 2013. I kept going back to my then-family doctor. I had multiple tests, an endoscope, and a colonoscopy, and my doctor concluded that I was fine: It was hormones. I was a mom. I needed to lose five pounds and sleep more. Recently, after I gained access to my medical files, I saw that my fibroids had initially been discovered in one of those ultrasounds. Back then, they were small — like blueberries. Now I had several that were the size of oranges.
“Endometriosis, fibroids, PMS, PMDD, PCOS, things that affect billions of people … are somehow under-diagnosed, under-treated, under-researched, under-funded,” says gynecologist Karen Tang in a viral video. “Instead of asking, ‘Why do women always feel so bad,’ maybe say, ‘Why as a society are we so bad at figuring out what’s going on with women’s health and treating it well?’”
In November, the White House announced the country’s “first initiative for women’s health research,” led by First Lady Jill Biden. “Research on women’s health has been underfunded for decades,” Biden said. “Many conditions that mostly or only affect women, or affect women differently, have received little to no attention … These gaps are even greater for communities that have historically been excluded from research, including women of color and women with disabilities.”
It is hopeful to see this. In September, the federal government of Canada announced $1.6 million in funding “to improve awareness of endometriosis, access to vital Sexual Reproductive Health (SRH) services and reduce barriers to care by developing resources for people living with endometriosis and health care providers.” What is really needed, though, are options and resources for treatment. Women shouldn’t be leaving their province or country to receive the care they need.
Even the matter of iron infusions can be challenging and difficult to understand. When I posted on X/Twitter about needing them, I was met with some confusion as to whether they were covered by OHIP. When the question was posed to the Ministry of Health, this was the response: “Providing the medication required for iron infusion therapy and administering that medication in a hospital is an insured service under OHIP that an OHIP-insured person who is a registered out-patient of the hospital is entitled to receive without charge.” But my friend Amber Mac posted that she had spent $10,000 on iron infusions while waiting for surgery, and I myself have had to pay for my iron infusions, which have been a lifeline while I’ve waited for surgery.
In October, the NDP called on the Ontario government to make a plan for endometrial care. In a statement to the CBC, the Ministry of Health said that “since 2018, it has added more than 8,000 new physicians, which includes increasing the number of obstetrics and gynecology specialists by 6.3 per cent.”
That same CBC article cites the case of Amanda Fruci, a 40-year-old woman from Caledon. She decided to go to New Jersey for treatment because of the surgical backlog in Ontario. “I wish that our current government in Ontario would take [endometriosis] seriously,” she said. “Why do I have to go out of the country to get the care that I need?”
In January, the provincial government announced that it was investing $18 million “in existing centres to cover care for thousands of patients, including … 1,000 minimally invasive gynecological surgeries.” Surgical wait-lists, it stated, “are anticipated to return to pre-pandemic levels by March 2023, barring operational issues.” As of September, 11,000 Ontarians were estimated to have died in the past year while waiting for scans and surgeries.
The government must do whatever is necessary — because what’s happening in Ontario with gynecological wait times is untenable and unfair. When we ask a mother who has had a miscarriage to wait a month for care because of a gynecology backlog, we have surely lost our way. Why, in this day and age, do we continue to treat women’s health as private and unmentionable? Are we okay with women suffering in silence? How do we develop a sense of urgency? Even in 2023, there seems to be shame around talking about so-called women’s issues. But if we don’t talk about it, then it’s hard to recognize there is a problem, let alone identify it.
As I count down the hours to my surgery, I am trying not to let my nerves get the better of me. I imagine myself walking into the operating room and closing my eyes. The relief will come, I hope, when I open them after a successful surgery. I have no choice but to trust the process. It’s not lost on me how many others continue to wait even for that.
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