I just celebrated my first year of living without menstrual pain since I was 13 years old.
I should begin by saying that sharing my periods with the world is not something I really planned on doing. I squirm about the “TMI” and “putting my business in the street” of it all. But anytime I share my story privately, I am struck by how many women tell me they or someone in their circle shares a similar experience. So here it goes.
From my very first period, every 28 days, like clockwork, I was bedridden with cramping so intense I would be either doubled over or writhing on the floor of my bedroom, vomiting, and missing school days. My mother and sisters offered me comforting words and back rubs, hot water bottles and ibuprofen; at school, teachers would offer me pity and a place to lie down. I didn’t see many of my friends taken out by their periods the same way that I was, but no one really gave me the impression that my period experience was unusual. I gathered that periods are miserable experiences for girls and women, and if yours wasn’t, you were one of the lucky few.
By college, the monthly pain had become a deeply rooted part of my reality—one I’d learned to live with. I had gone on the offensive, managing the pain by taking over-the-counter painkillers preemptively in the days before my cycle. It wasn’t a fix but it knocked the pain down from a debilitating eight or nine to a manageable five on a scale of one to 10. But around my early 30’s, the intense cramping and heavy bleeding and clotting grew worse than ever. I was alarmed—not to mention, extremely uncomfortable.
My experience wasn’t uncommon—but that didn’t make it normal.
My gynecologist performed an ultrasound and found a few very small uterine myomas, more commonly known as fibroids. Although fibroids are extremely common, not all women who have them experience symptoms or an impact on their reproductive health. I felt I was in the unlucky minority.
But at least I finally had a diagnosis. Now, what to do? Luckily for me, they were intracavitary myomas, which meant the fibroids were located where a surgery could be performed non-invasively. Gyno #1 recommended a surgeon to perform the excision and sent me on my way. But at that point, I was in the midst of moving across the country so I had to find new doctors in my new city. My new gynecologist had a different opinion. A surgical procedure, Gyno #2 said, was never to be taken lightly, no matter how non-invasive or routine. Fibroids were likely to recur, she explained, so surgery may only be a temporary solution. She recommended that I use a hormonal birth control method to mitigate the symptoms and stunt the myomas’ growth.
So I had some choices, none of them ideal. I could try hormonal birth control again, which in previous attempts had caused weight gain and acne, and made me feel cranky and bloated every day of the month, not just during PMS. I could surgically remove the fibroids, with the possibility that they would return. Or, I could live with untreated fibroids—like so many women do—and live with the heavy, painful periods and risk to my fertility.
My experience wasn’t uncommon—but that didn’t make it normal. Black women are “two to three times more likely to have fibroids, to develop them at younger ages, to have bigger fibroids, to have more fibroids, and to have more symptoms,” relative to white women, according to the Black Women’s Health Imperative. On top of that, “the rate of hospitalization for fibroids is three times higher for black women than white women.”
After some discussion, I opted for an IUD. It can take up to six months for an IUD to re-regulate your cycle but in my case, I saw some positive results right away. My period became lighter and lasted for fewer days. And best of all, the debilitating cramps were gone! Even my PMS symptoms subsided. At my six month check up, my doctor told me that the spotting I had begun to notice was normal (confirming what I had already learned in my late night Google searches). So far so good.
Before long though, some mild cramping came back, along with a different kind of pain. It was a sharp surge through my uterus and it came at completely random times. I also seemed to be spotting more often. My PMS symptoms returned—bloating, moodiness, fatigue. I checked Google again and found that IUD’s have a wide range of effectiveness for treating those symptoms, so although I was disappointed by the results for me, I was not alarmed.
Gyno #2 asked me, “Well, is there less pain than there was before?” I took a moment to consider. The discomfort was intense, but the bouts of sharpness were short-lived compared to the hours or days of cramping I was used to. “I guess so,” I said. The return of some pain and inconvenience was annoying, but normal both for me and so many other women…right?
Within another few months, the pain had centralized in my pelvis, and it was gnarly. I mean, like, near black-out pain. It would come on suddenly, and felt like a very slow stabbing. And because I was spotting pretty much every day at this point, I could no longer identify when my period began and ended, so I couldn’t associate it with any particular stage of my menstrual cycle. Meanwhile, that daily “spotting" was getting heavier and could more accurately be characterized as just "bleeding non-stop.”
One night, while watching TV with my then-fiancé, I cried out and crumpled into the fetal position, seized by yet another slow stab. Pete had witnessed this enough times, and finally said to me, “Maybe you shouldn’t be in this much pain.”
Between listening to conventional wisdom and my doctor’s differing opinions, I had completely lost track of the best navigation device I had to guide me to wellness: listening to my own body. That moment on the sofa was the first time I had considered my beliefs about how much pain ought to be acceptable might be…wrong for me? Having someone else call it out so starkly helped quiet the noise of self-doubt so that I could listen to my body—which was clearly telling me no, I should not be in so much pain.
When I went back to my gynecologist I was confident. “The pain is different and it’s worse. But I don’t want to have any pain. So let’s find another solution.” I was firm.
I no longer believe that pain—especially when it occurs in black women—is the status quo.
My intuition was right. An ultrasound revealed that the IUD had been moved out of place by the fibroids, which had more than doubled in size. And the IUD was the cause of the scary pelvic pain I was experiencing. Finally, I was done having my gut overruled. I was ready to advocate more forcefully for myself—and that began with finding another opinion.
Gyno # 3 listened to my tale of menstrual woe, all the way from the beginning. Her response was blunt: “If your period is painful then there is something wrong.” She was the first and only person I had ever heard say that.
I’m not alone in thinking I didn’t have other options. “Women may not recognize that they have [fibroids] for months or years, resulting in a delay in treatment, and physical, economic, and emotional costs,” according to the Black Women’s Health Imperative. Perhaps my tiny fibroids had been there even longer than I knew, but because I had adapted to a life with pain, I hadn’t done my own research or insisted that my doctors look for them even sooner. And even when black women know our bodies and use our voices, unconscious biases often impede providers from offering the same care to us as they do to white women.
It’s strange to think that a doctor telling you something has gone wrong could be comforting. But after years of living with intense pain and feeling like I didn’t have a voice, the feeling of relief at having an answer was profound. And, I realized that accepting pain as my status quo and not forcefully advocating for myself were two sides of the same coin. Gyno #3 performed a surgical excision, and now the pain and discomfort of fibroids isn’t “what I live with” anymore. I no longer believe that pain—especially when it occurs in black women—is the status quo, something to bear in silence, while disrupting our lives and endangering our fertility.
Being symptom-free for the first time in my adult life has enabled me to experience my body as a sort of blank slate, and now I experience pain as a signal that something needs my attention. I am trying to become more of an expert on my own body so that my relationship to medical professionals can be more collaborative and intuitive. And now, having “put my business all out in the street,” my hope is that sharing this encourages someone to probe themselves and their doctors a bit more deeply to find solutions to their own health concerns.
Kelly McCreary is an actor and producer. She lives in Los Angeles with her husband, Pete, and their dog, Motown.
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