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My Uterus is Now Public Domain
For the benefit of uterus holders everywhere
When you’re born with a uterus, there are things no one tells you.
We don’t talk much about uteruses in public, unless they’re behaving as intended—and even then, only a narrow scope of uterus talk is approved for polite conversation. Pregnancy? Yes, as long as you’re not annoying about it. Cramps and periods? No one wants to hear about that shit. Your hysterectomy? Maybe, but only because it means you won’t be complaining about your uterus problems anymore. And after a few days, buck up and shut up about it.
And that is precisely why, when my uterus forgot its manners, I knew I was surely the only person in the world suffering from such a defect. If you’ve ever felt like this, or if next month or next year or 10 years from now you have a similar experience, this story is for you.
Possibly as importantly, if you don’t have a uterus but know someone who does, this story is also for you. The shit we uterus-bearers go through is wild. The more we talk about and understand the very real, debilitating, and even at times life-threatening invisible suffering people are going through all around us, the better off we will all be.
This is a long story, and I’m not shortening it. It’s graphic at times, and I’m not posting a content warning. These stories are complex and important, and they need to be read and shared. So, when you’re finished reading, I hope you’ll share—without an asterisk. I hope you’ll also consider leaving a comment to share your story.
My last normal menstrual period was on July 4th. I remember it because my cramps were so bad I thought I’d puke while I walked my town’s parade route, carrying one end of a banner proclaiming love and support for our LGBTQ+ community members while my daughter held the other end. I remember because a fellow walker was also on Day 1 of her period and, edgy and progressive as we are, we felt comfortable talking about how we’d both forgotten our morning dose of ibuprofen and our uteruses were bathing us in misery.
I am blessed with a period that is predictable and quantifiable. I’ve been tracking it since my ten-year-old was born and using a menstrual cup for almost that long. I know when to expect it and what shape it will take. I know I’ll need to pair period underwear with my cup and take hourly bathroom trips for the first day and night, and that 800mg of Advil when I wake up and before I go to sleep is the only way to take the edge off the nauseating cramps. And on July 31st, I knew my period was late.
I wasn’t—am not—pregnant. I feel the need to say this, though I’ve made it clear since before my youngest was born that I was finished with the childbearing portion of my life. Still, it’s the first question people ask.
However, much like the days when I was trying to (or trying not to) get pregnant, each time I went to the bathroom I’d examine the toilet paper and try to read some invisible tea leaves. A couple of times, the tissue came away pink. But there was no cramping, no real blood. No period in sight.
The first clot passed on the day we started driving to South Carolina. After having given birth three times, I knew what a blood clot was. But I wasn’t used to seeing them on some random day in August, more than three years after my last child had been born. It was weird. But perhaps weirder is that nothing else came of it. One weird day, followed by two weeks of nothing.
I’m familiar with the idea of menopause from an intellectual standpoint. I even know a little about perimenopause, thanks to a friend who shares all the wild shit her body goes through so the rest of us are prepared when it comes for us. But you don’t just wake up one day with a missing period, not after years of atomic-clock accuracy.
How long does one go before seeing a doctor in this kind of situation? I wondered. What kind of doctor should I even see? A gynecologist is the obvious choice, but I’m a big fan of my primary care doctor and enjoy seeing them as a first stop when I have no clue what’s happening.
While I was considering which kind of waitlist to get on (because there would certainly be a waitlist), the bleeding started. But this was not your standard period. The clots had returned with a fascinating and terrifying force. Every time I emptied my cup, one would splash into the toilet bowl. I collected one on toilet paper—nickel-sized or bigger—and took a picture, thinking this might be something my doctor would want to see if I ended up getting there.
I had a theory, of course, just like anyone with an undergraduate understanding of the human body might concoct: My period had been blocked somehow by a clot (Where had it come from? That was anyone’s guess.) and now the clot and the period were all coming out.
But after five days of bleeding and clotting, I decided that even if my theory was right, I probably should check with someone who actually went to school for this kind of thing. My first stop was the women’s health clinic I went to for my last pregnancy. The next available appointment (I checked thrice) was November 16. It wasn’t even September yet.
I next checked with my primary care’s office, just to rule out the possibility that my uterus was trying to murder me from the inside as I waited for the gyno. “Can you come at 3:00 today?” they asked. I’d rather not, I thought. It was a Friday. I wanted to hang with my family and eat trashy takeout. But I went. It had been five days of bleeding, both longer and weirder than any period I’d ever had.
My doctor suspected I’d just skipped ovulation the previous month. She summarized the hormone cycles I learned about when I wrote my novel (How’s that for full circle?), and it totally made sense. The lining of the uterus gets pretty thick when that happens, which could explain the clots. She also told me, after reading my blood work, that I was anemic and commanded me to take an iron supplement. “And if the bleeding continues, we’re going to want you to see gyn.”
The next day, we left for Canada. I’d get some iron when I got back, no big deal.
But, man, I was tired. I went around with the family—took walks, ate meals, drove up Mont Royal and climbed several flights of stairs to see the view. When bedtime came, though, I was toast. I stopped at a pharmacy on the way to pick up food one afternoon, thinking it couldn’t hurt to grab some iron there. It turns out that, in Canada, you must speak with a pharmacist, open an account, and show blood tests in order to get what, in the US, is just lining the supplement aisle in ten different colors. “No thanks,” I said. “I’ll just wait until I get back to the US.”
The first night we were back in the US, I couldn’t sleep. Right there, anyone who knows me would identify a problem. I might get up before the robins, but I can sleep literally anywhere. Insomnia is not something that afflicts me. The second night, I realized the issue: My legs felt like there were bugs crawling inside them.
I’ve had restless legs before—usually they tickle in the evenings while I’m watching TV and then I forget about them when it’s bedtime. But this was persistent and very uncomfortable. What caused it, though? I wasn’t sure. So I consulted my pocket doctor, and you’ll never guess the very first cause.
I brought up the graphs from my medical chart. Low, indeed. These had been taken nearly a week ago, and the blood was still flowing. I picked up some iron and started supplementing. Around that time, my “period” finally ended. It had lasted nine days.
Unfortunately the hiatus didn’t last half that long. Four days later, the flow started again, and four days after that I was on the phone with the women’s health office begging for an appointment. By now I was scared. What causes someone to bleed for this long? I was also not particularly pleasant to be around. Hormones have never affected me much—I was a very pleasant pregnant person, and I don’t get moody in response to my monthly hormonal cycles. But losing blood for this long with no explanation had put me in a pretty bad space. Anytime one of my kids complained about not having the right brand of fruit snacks or not being properly coddled by one of their teachers, I wanted to yell, “I’ve been bleeding from the vagina for 2 weeks, so don’t complain to me about shit!”
The office was able to get me in the next day, and as the appointment approached, my concern for my health was joined by another kind of anxiety. What if this doctor just shrugged and said, “Sometimes this kind of thing happens”? After 41 years of life, I am accustomed to this nonchalance from medical professionals—both in my personal experience and from hearing stories of others. Women are often not taken seriously, particularly with respect to reproductive health issues. Cramps aren’t a legitimate complaint, even when they have us doubled over trying not to yurk into the gutter. Pain, even during medical procedures, is to be tolerated because “there aren’t many nerve endings in your cervix, anyway.” Bleeding—well, that’s just what your uterus does, right?
To top it off, I realized when I completed my online check-in that the doctor was a man. Later I realized that he was a very young man—the first doctor I’ve had that appears to be a considerable number of years my junior. I shook his hand when he introduced himself, but I had to check the dread that was building up.
Okay, so the doctor was lovely. He listened and shared my concerns. He was quirky and personable and enjoyed answering nerdy uterus questions—it was like talking to a doctor version of myself, and that was comforting. He scheduled an ultrasound, after which he told me he’d need to do a procedure called a hysteroscopy to look inside and confirm the findings. We could chat about a medication to stop the bleeding if it continued. And boy did it continue.
After bleeding for 25 out of 29 days, after waking up twice in the middle of the night with an overflowing cup and blood-soaked sheets, for two nights in a row, I was feeling pretty awful. I kept calling, trying to get an earlier appointment—at two different practices!—and nothing was budging. So I did the only thing you can do when you’re losing blood each day and none of the people who are supposed to be able to help you are available.
I went to the emergency room.
“What brings you in today?” they asked.
“I’ve been bleeding for a month.”
Even as bad as I was feeling, a part of me insisted I was being ridiculous. I had to go in and act like it was a big deal—to me it felt like a big deal—though I default to polite if deadpan humor even in my worst moments. “You need to cry,” said one of my friends. “Doctors don’t take stoic women seriously.”
I will never resist an opportunity to characterize emergency rooms as the seventh circle of hell. This one, though, at noon on a Friday afternoon, actually wasn’t that bad. My doctor happened to be at the hospital with three laboring patients, and he stopped by and chatted with me, prescribed me some progesterone to stop the bleeding, and even got my procedure scheduled for the following Tuesday. The hospital took more blood and repeated the ultrasound as my blood leaked out of my body and soaked the sheets.
My iron was great. My blood counts, however, were not. All signs pointed to anemia, not surprisingly more profound than it had been three weeks earlier. “No wonder you feel like shit,” said the nurse, and that might have been the most validating thing I’ve ever heard until she said, in a conspiratorial whisper, “I’m not supposed to say this as a nurse, but this same exact thing happened to me.”
According to the PA, I was right on the border of needing a blood transfusion.
What is it about this world that makes women believe they need to be at death’s door in order to warrant any medical attention at all? Don’t answer that.
The procedure happened 10 days ago. I was terrified I would have to do it without anesthesia, as with other women’s health procedures I’ve had to endure. But, no—I was blissfully asleep while the guy who removes uteruses with robots on Wednesdays looked up into mine and then removed the tissue that was causing me such trouble. He answered my questions before and after and, while I’m not convinced this is the end of my worries, I’m grateful for the temporary reprieve and thrilled to have such access to my health information (No cancer or hyperplasia!) and my doctor. This should be the default, by the way; instead it’s a unicorn miracle that most people (including me at most other times in my life) don’t get to experience.
I’m going to publish this story, and 99% of the people I know are going to say, “Wow, I had no idea this was going on!” Meanwhile, of the few people I spoke with about my situation, nearly every single one had gone through something similar—some for far longer—or knew someone who had. That’s because we know not to talk about our uteruses and also because, to be frank, shit needs to get done whether or not we have blood streaming from our netherregions.
For this entire time, I have been going to work, doing my various at-home jobs, going to events, doing cohort work for my news publication, parenting my children, going to archery practice, going to the gym, and all the other things I need to do to keep my family and professional worlds functioning. No one would have known how miserable I was, even as I was on the brink of needing someone else’s blood to replace the stuff I’d lost, because lady bits aren’t to be spoken of.
And that’s why we need to be talking about these things. My uterus is now public domain, for the benefit of society at large. Feel free to share your story, too. Comments are always open.