I was 22 when I realized there was something wrong with my periods. Until then, I just accepted that heavy bleeding and painful cramps were my normal. I had to constantly think ahead of my period, timing each dose of two extra-strength Advils every four hours to the minute, or risk the waves of throbbing contractions that would go through my abdomen and lower back. Sometimes the cramps would feel like lightning searing through me, stopping me in my tracks. When they came on, all I could do was sit very still or curl up in bed, waiting for it to pass, feeling helpless. But one day the pills stopped helping and, gradually, the bleeding got worse. I started soaking through 12 pads a day.
I told my family doctor all of this, yet she dismissed my worries. She said some women just have heavy periods, but that this phase would likely pass. I believed it for a while, but within a year, the cramps became unbearable and came on even when I didn’t have my period. Then I began spotting and having difficulty peeing, even though I felt the urge to go all the time. It was exhausting. But the most telltale sign that I was not OK was my stomach getting noticeably bigger—like there was something growing inside of it. And every time I touched it, I could feel a hard mass, so I went back to my doctor, and this time, she sent me for an ultrasound. At the follow-up, she told me I had a type of tumour called a fibroid. It was the first time I had ever heard the word, and I cried in the exam room as it started to sink in.
As I researched the condition, I learned that fibroids, also called leiomyomas or myomas, are noncancerous tumors most commonly found within the muscle tissue of the uterus. Mine was right on top of my uterus, and as it grew, it was wreaking havoc on nearby organs. Anywhere between 20 to 80 percent of women until the age of menopause will have fibroids, and they can grow as large as melons. When I was first diagnosed at 23, my fibroid was the size of a tennis ball. A few months later it had grown to the size of a grapefruit, and by 25, it was the size of a cantaloupe. I could no longer fit in my clothes and I looked like I was actually six months pregnant.
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I was referred to an OB-GYN, and we discussed my options. There were only three things I could do about my fibroid. Either leave it and let it keep growing, take hormones to shrink it (and let it grow back as soon as I stopped the medication), or undergo surgery, called an open myomectomy, to remove it. Every surgery comes with complications and I was told that with the possibility of hemorrhaging, there was a higher risk of a hysterectomy. I sat with the possibility of losing my uterus and decided that the risk was worth it.
Throughout my whole journey, I kept thinking how could I have never heard of fibroids until this happened? Sadly, a lot of it had to do with the colour of my skin. Fibroids are largely experienced in secret and stigmatized because they mostly affect Black women, leading to shame and isolation for those who suffer from them. I learned that two of the biggest risk factors are a family history and race. Black women are three times more likely than white women to have fibroids, according to the Canadian Women’s Health Network. Relative to white women, Black women are also much more likely to have bigger fibroids, to have multiple fibroids, to have severe symptoms and to develop them at a younger age, impacting their sexual health and childbearing plans. Sadly, Black women wait longer to get treatment for fibroids, and are more often hospitalized for them. And while the fibroid connection to race is not well understood, the Black Women’s Health Study is looking at possible causes, including lower vitamin D, higher rates of obesity and even exposure to racial discrimination.
A ‘blind spot’ in healthcare
While I was going through the trauma of fibroids, I searched in vain for stories like mine. None of the mainstream women’s magazines and health sites I read covered the condition, and if they did, it was often in association with something else like menopause or heavy menstrual bleeding. It made me feel alone, like I didn’t matter, like what was happening to me was so rare that it only affected a handful of people in the world.
The lack of awareness starts within the medical community, says Amoy Jacques, an activist for Black women’s health and the program director of WombCare, organization that provides reproductive and sexual health services to racialized women based in Ajax, Ont. She says the implications of not giving the necessary attention to serious reproductive health issues that affect Black women “leaves a huge blind spot,” and alienates women of colour.
“Black women’s health issues particularly in Canada are limited within the medical community due to systemic racism that exist within our health institutions, politics around funding health initiatives…and lack of understanding and cultural humility among healthcare providers.”
Dr. Yolanda Kirkham, a gynecologist at Women’s College Hospital and St. Joseph’s Health Centre in Toronto, says that there is a lack of representation within the entire field of medicine, which affects all minorities and women. “Women were only included in research studies a few decades ago. The importance of representative populations in research studies is increasingly being recognized…but we need more studies focused on how disease affects different people and their quality of life.”
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Awareness and research funding for women’s health in particular is increasing, says Dr. Kirkham, but is still low compared to other health research. And while visibility of some reproductive issues such as endometriosis (another extremely painful uterus disorder) have improved thanks to vocal advocates and celebrities such as Lena Dunham, who has been extremely open about her struggles, other conditions that mostly affect Black women are under the radar. Dr. Kirkham hopes that trend is slowly changing, thanks to other celebs such as singer FKA twigs who likened her fibroids to “a fruit bowl of pain every day” and shared her excruciating experience on Instagram in 2018, as well as activists like Nadya Okamoto, who created a non-profit organization in 2014 to end period poverty and stigma.
My normal wasn’t normal at all
When you suffer from a reproductive issue like fibroids, it changes how your body functions, which affects your quality of life in every way, from heavy and prolonged periods, to difficulty going to the washroom because your bladder is being crowded, to painful sex, to living on pain meds and spending a huge amount of money on menstrual products.
I had anxiety about leaving the house, worried I wouldn’t be close enough to a bathroom to quickly change my pad. I feared the embarrassment of period blood leaking through my clothing onto chairs and subway seats. Long rides were often out of the question. But mostly, I worried about how I would manage my cramps when I wasn’t home. I would miss days of work or have to go home suddenly at the onset of pain. If the cramps came on while I was travelling, I would feel trapped. I lived in fear of my period.
Dr. Kirkham says she often sees women in their 20s and 30s just beginning to realize their periods have been abnormal, suffering for a long time, because it was their normal. Allyson, a 28-year-old who lives in Brampton, Ont., was first diagnosed with fibroids at the age of 19, but her family doctor didn’t recommend treating it. But when she got pregnant at 23, her fibroids started to grow rapidly, which is common due to the surge of pregnancy hormones. Her doctors told her to watch for bleeding during her pregnancy, which luckily did not happen, but they still didn’t suggest treatment after her baby was born. “I wasn’t even referred to an OB-GYN until I got pregnant. The doctors noted that my fibroid was growing alongside my baby, but they didn’t make a big deal about it.” Allyson says she had talked about fibroids a bit with her mother, but mostly just took the suffering for granted. “Generations of Black women suffer with their periods and believe it [to be] normal, it isn’t right, and it isn’t fair.”
Growing up, when my girlfriends and I would talk about our periods and different health issues, our worries were focused around more publicized reproductive issues like polycystic ovarian syndrome [PCOS], which happens when a woman’s reproductive hormones are imbalanced, causing issues with the ovaries and the release of eggs; or endometriosis, where the uterine lining grows outside of the uterus, causing pelvic pain and issues with reproductive organs. We heard about these conditions from our doctors, who told us to watch out for any irregularities in our cycles, and even on social media, with celebs like Dunham, Jillian Michaels and Victoria Beckham have been vocal about their struggles.
Even in my own social circle, by the time my friends and I had reached our 20s, three of them had been diagnosed with endometriosis or PCOS, but all of them had to google fibroids when I told them I had been diagnosed with the condition, even though women in their own families had suffered them.
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Katherine*, a 58-year-old from Toronto, was first diagnosed with fibroids at 39, which is when she found out that her mom had them too. “My mom never talked to me about it even though she had the condition. No one in our family talked about it. My mother had it, my niece, sisters, and sister in-laws had fibroids, but we never talked about it.” Katherine ended up needing a full hysterectomy a few years later after her youngest daughter was born.
Being our own advocates
Although there isn’t a lot of research to go on, mainstream media and society can work towards welcoming Black women into the spaces in which white women talk about their reproductive health concerns—to understand the validity of fibroid pain and how it disproportionately affects Black women. But the burden again rests on Black women to be vocal about our bodies. This starts by sharing our stories and being honest about our experiences. It starts by advocating for our health with our doctors, and in the communities in which we live. Most importantly, it is about taking away the shame that surrounds having fibroids and owning our experiences and allowing ourselves to be open about our fears.
We need to actively try to close the knowledge gap and make sure that there is a place for all women, especially Black women to get information that can save their lives, says Dr. Kirkham. “What we don’t know can hurt us. And wrong information, or perpetuated myths can be even more damaging,” she says. Removing the stigma and taboos of talking about periods and fibroids is a step in the right direction. “There is a lack of awareness about normal periods, and a reluctance to talk openly about monthly bleeding that happens to 50% of our population.”
Jacques also believes that Black women need the same opportunity to talk safely about their issues and acknowledges that the tide is shifting. “Black women’s health concerns are often not taken seriously, nor have we been given safe spaces to discuss our issues openly. Reproductive and sexual health concerns are often seen as taboo topics, often talked about in secret, with shame or not at all,” she says. In comparison, she says white women are often given a platform to discuss their issues openly and provided with options for health interventions to better manage symptoms.
If we’re looking for examples of how Black women are ignored by medical care providers or not given the space to express their health concerns, look no further than Serena Williams. She may be idolized for holding 23 Grand Slam titles, but she wasn’t an exception when she almost died after giving birth to her daughter, Olympia, in 2017—when she was dismissed by nurses and doctors for complaining of problems breathing due to her history of pulmonary embolisms. She had to insist and fight to get a CT scan, which ended up saving her life. Her concerns just weren’t taken seriously, and sadly that’s a similar experience for many women of colour.
I know that as a Black woman, I feel like I have to take on a persona of strength. But in trying to be strong, I’ve also struggled with admitting when I’m sick or have serious concerns about my health.
Now 29, it has been three years since my surgery. After the fibroid was removed it took me a while to get to a place of comfort and strength. It’s amazing how weak you can feel one moment and how powerful the next. It’s amazing that your body can be cut open by a doctor and then be sewn back together again. It’s miraculous how your body can heal. My periods are no longer as painful or uncomfortable and instead of going through a dozen pads a day, I can get by with about four. I can actually pee without a tumor pressing against my bladder.
I feel better physically than I have in a long time but I’m still afraid that one day my fibroid will come back, because there is a 50 percent chance of a recurrence. But the difference is that I’m empowered now—by my own strength and the knowledge I have gained about this condition and the fact that more and more women are opening up about their reproductive struggles. I hope that in the future, the voices of people of colour like myself are a part of the wider conversations about women’s reproductive health, and that others may feel less alone than I once did.
*Name has been changed