“This motherfucker right here,” I muttered to myself earlier this summer, when I had some spotting the week after what I thought had been the end of my period. Those of us who menstruate know that feeling.
I’m starting here, but I could just as easily start 17 years ago when I was first diagnosed with multiple sclerosis following a year of futile appointments repeating what I already knew — this requires further examination, this requires more testing, have you considered more psychotherapy? — and approval waiting periods and gaslighting comments from specialists before I reached a final diagnosis.
Or I could go back 20 years ago, during my second ever pelvic exam, during which I said I felt a lot of discomfort and the doctor chuckled loudly, saying if I could have sex, then I could take a speculum. When I said I hadn’t yet had sex, she just scoffed.
Or we could go back 42 years to the night I was born, or, rather, I was trying to be born but I was struggling to get through my mother’s too-small pelvis and was running out of oxygen. Despite my mother’s repeated voicing of concern that something was wrong and her baby was in distress, it still took five more hours before a doctor decided she was right and agreed to an emergency caesarian.
I could go on, but I think you get the pattern I’m establishing.
I have had a menstrual cycle since I was 11 years old, and I have used IUDs since my early 20s. After painfully discovering one had migrated to right above my cervix, I had my IUD removed earlier this year. By June, I was about four months IUD-free and pleasantly surprised to discover my hormone- and device-free period in my early 40s was looking to be light and short.
When I noticed the spotting, I was recovering from my first known brush with COVID-19, following years of vaccines, boosters and humble bragging. So I thought, Maybe it’s the virus? And that’s what I continued to think the next day. And the next. Thus began my summer of magical thinking — a heightened state of denial I would embody for more than a month.
On the fifth day, I was no longer spotting but having what seemed to be a full-on menstrual flow, except I hadn’t had any bloating or soreness or cramping. The blood was fresh and the kind of red that comes on the first day of a period. The kind of red that says STOP.
I did not stop. I kept going and rationalising along the way.
“Can you get your period twice in one month?” I asked Google. Of course, you can. I’m 41 years old, this could be the start of perimenopause for all I know, I thought. And you had the IUD removed; your body’s still adjusting.
It’s an instinct to dismiss any alarm around our bodies as women, especially around periods. We’re taught that a period is a natural thing, therefore we are not supposed to collapse and stop everything. We’re taught that a period makes us crazy, irrational. And when we’re sick and need urgent attention, we learn the very first and most important question to ask: “When was the first day of your last period?”
I kept on bleeding that week. And into the next month. It reached a point where if I moved from sitting to standing I felt the urgent need to change my pad. Slowly but steadily, my life began to take a homebound shape because going anywhere might mean having an accident or, more likely, making the bleeding worse.
This wasn’t my first rodeo — I was already well-versed in the territory of patient advocacy after my MS diagnosis. My diagnosis came before the Affordable Care Act, so I spent hours, sometimes whole days, on the phone with patient reps, insurance agents, hospitals and pre-authorisation departments repeating my name, my information, my diagnosis and why it was that I needed their help, consideration, financial assistance, approval, temporary enrolment, etc.
But being well-versed, well-experienced, seasoned in the field of American medical bureaucracy doesn’t mean I always rise to the occasion.
“And, by the way, Linda, this is an emergency, you don’t need to use the patient portal for this, please always call.” After almost five weeks and an anxious plea from my mother to contact my doctor, I sent an email to their office explaining what was happening and asking if I should make an appointment to come in. I was surprised when my phone rang less than an hour later.
“Are you bleeding through a pad an hour?” I had memorised the scripts and protocols, and I sighed heavily when giving my answer. Well, no, not always. But sometimes. I was bleeding more than my usual. I was surprised again when she responded, “You need to go to the ER.”
I allowed just a tiny bit of relief to seep into my body.
At the ER, they took all my vitals and I was taken for a transvaginal ultrasound. When I see the tech’s face go pale, it happened again: the simultaneous affirmation (Yes, I was right, something is wrong!) and fear-raising (Oh, no, I was right, something is wrong!).
The physician’s assistant came back, but before she shared my results she looked at me with some alarm. I followed her gaze to my arm, where the nurse had drawn blood earlier — and it was now in a mesh of red rivers. The bandage covering the inside of my elbow from the injection was sticky and wet with fresh blood.
“When I see the tech’s face go pale, it happened again: the simultaneous affirmation (Yes, I was right, something is wrong!) and fear-raising (Oh, no, I was right, something is wrong!).”
“Did you take an IV out?” (Again, the indictments). I said no. The nurse came running in and dressed my arm. The PA shook her head and then said, “Sometimes when the body has been bleeding for a long time, the blood starts to thin.”
I’ve had numerous very tiny fibroids since my early 20s. I don’t know a single Black woman who does not have fibroids. We’re more likely to develop them and to need surgery for them, and we are more likely to be misdiagnosed. Or to avoid seeking help at all.
When I had my IUD removed, it had been years since I’d given them a thought. But one of the long-term effects of using an IUD is a reduction in fibroid growth, and in the handful of months following the removal, those fibroids made up for lost time. They all began to grow, but two of them almost exponentially so. The largest was pushing from within my uterine wall into the cavity.
I was not menstruating. I had been hemorrhaging from my womb for more than 30 days.
“Do you plan on having children?” The PA delivered the follow-up: “Are you possibly pregnant?” Perhaps I was avoiding this as well, that dreadful moment when you’re so close to the other side and then are asked to deliver your thoughts on motherhood.
After learning I was not planning on getting pregnant in the future, the PA explained that treatments ranged from taking hormonal birth control to a laparoscopic myomectomy. Appointments were made with an OB-GYN for a consultation to determine which option would be best. I was discharged and given a handout on uterine fibroids and heavy menstruation. I read the line about changing a pad every hour and stopped. “Wait, isn’t there something I can take for the bleeding? That’s why I came in the first place. I can’t really function ... ”
The nurse shrugged her shoulders. “You have fibroids. Fibroids are going to bleed.”
“Right, thank you,” I said, already hating that I was using gratitude as a way to be heard, “but I came here because the bleeding is unmanageable, and even if just for a day or two, there’s got to be something I can take to reduce the amount.”
She just shook her head as if I was asking for a cure to cancer. “We’ve done all that we can do for you here. You have your labs and test results, and you’ll see your doctor in two days.”
When people ask me: Why did I wait so long? Why didn’t I call the doctor sooner? This is why. I’d been bleeding on a cyclical basis for 30 years, and though I wasn’t bleeding through a single pad every hour, I knew something was wrong. But knowing what is to come ― knowing what will be said, knowing that you will have to push to be heard and knowing you will most likely leave disappointed and afraid and still bleeding ― is staying home and changing a pad forever really so bad?
This was the conversation I was trying to avoid to the extent that I was willing to lose a significant amount of blood on a daily basis and that I would be on prescription-strength iron for anaemia for the foreseeable future.
A few hours after I left the hospital, I got a call from the on-call physician letting me know he was prescribing medication to stop the bleeding. I don’t know if someone else heard my exchange with the nurse or if he reviewed the notes and asked the same question I did.
It’s fully autumn now, and I am no longer bleeding nonstop. I went back to the IUD and after about four months my cycles are returning to normal. My normal. It’s still hard to believe that I really did delay getting help in order to avoid a few moments of frustrating gaslighting.
But then I remember how those “few moments” pile up over a lifetime, snowballing into the collective trauma experienced by Black women who try to receive help and health care. And I forgive myself again.