CRAMPED: Why Medicine Ignores Period Pain

What started as a personal quest for answers about my debilitating cramps has become a fully funded investigative podcast - follow along with my research through this newsletter!

The first time I got “Death Cramps” I was 14 and in science class in my rural Maine high school. I had had my period a few times already, with just some dull aches and tiredness, so I thought I had it handled. But this was something different. As I sat there in class, the dull ache in my belly was turning into an intense, twisting pain through my whole abdomen. I was sweating in waves, getting nauseous and dizzy. I asked to go to the nurse, and discovered I couldn’t stand up all the way. Very embarrassing. The long, empty hallway from the classroom to the nurse’s office suddenly seemed completely impossible, it may as well have been Everest. I was dripping sweat, taking a couple of steps and then leaning against the lockers to let waves of pain pass. I had never been in this much agony before in my life. I had nothing to compare it to, but I thought this must be one of those things like having your appendix burst - definitely a once in a lifetime medical emergency. If I could just make it to the nurse’s office, she’d call the ambulance and a doctor would do surgery and I’d wake up and they’d explain to me what had gone so wrong inside my body.

When I finally made it to the nurse’s office, soaked in sweat and trembling, to my surprise she did not immediately call an ambulance. She took my temperature and asked me if I was on my period. When I said yes, she rolled her eyes, told me she wasn’t allowed to give out Midol, but I wanted to I could wait here until my cramps were better, but then I had to go back to class. I tried to explain that this couldn’t be cramps, but I was interrupted by my body evacuating everything in my gastrointestinal tract from both ends. She gave me a hot water bottle. I continued to throw up every 10 minutes for an hour despite there being nothing left in my system. When the extreme and unending pain caused me to hyperventilate to the point where my hands bent into claws and I passed out, she finally called my parents.

Later, after I woke up at home groggy and sore but no longer in pain, the worst part of the whole experience was that there was no doctor explaining to me what had gone wrong inside my body. My parents didn’t know what had caused it, which was confusing. After getting my first gynecological exam (fun!) I described how intense the pain was, and asked what was wrong and how we could treat it. The doctor (a woman) told me that some people just get worse cramps than others, and it would probably get better after I had a baby (statistically false, and a pretty fucked up thing to say to a 14 year old), and that next time I should just take some Advil. I couldn’t understand why nobody was getting it. There was no way this amount of suffering could be normal. It had to mean something was wrong. But anywhere I went for answers, I was met with puzzled dismissal. The message I got was that my body was not normal - it was doing something no doctors had a reference point for, that my mom had never heard of or experienced, and that was not in any of the books I’d read to prepare for puberty. Unlike any other pain I’d felt and told an adult about, this pain was MY problem. It was something my body was doing, a malfunction, with no explanation or solution. And somehow…the unspoken implication was that it was at least a little bit my fault.

That was how I learned that period pain is not treated like other kinds of pain. In the 20 years since those first “Death Cramps,” they’ve never gone away. They don’t happen every month, and I’ve learned, through lots of trial and error, how to give myself a fighting chance at making it through a period without hours of throwing up and passing out. But it still happens. I’ve missed school, work, and important events. I’ve lived in fear of the cramps starting out of nowhere at the worst possible moment and not being able to stop them. I’ve spent dozens of hours a year curled around a toilet, crying and hoping I’d pass out soon. In 20 years, I’ve seen lots of doctors, and when my ultrasounds and pelvic exams are normal, they all do the same shrug, and say some variation on “have you tried taking ibuprofen, dummy?” The dummy part is more the subtext, but it’s pretty clear.

After years of feeling like a medical mystery nobody wanted to solve, I finally, cautiously, started talking to other women about just how bad my cramps are. To my shock, many of them said “oh my god me too! I thought I was the only one!” How could this be possible, if all my doctors had looked at me like they’d never heard of this before?? If my body wasn’t weird and wrong and doing something completely out of the norm, how could my doctors be so puzzled by what happens to my body, and have NO TREATMENTS??

It probably won’t shock you that I’ve done a lot of research in hopes of finding some answers. Here’s a few things I’ve found:

• The medical term for period pain is “dysmenorrhea.” It has the dubious distinction of being a term that can be both a symptom and a diagnosis . This is like if you went to the hospital because your left arm hurt and you had chest pain, and they diagnosed you with left arm and chest pain. Not helpful!

  • “secondary dysmenorrhea” is when your period pain is caused by an underlying disease or issue like fibroids, cysts, or endometriosis

  • “primary dysmenorrhea” is when you have period pain but they don’t find an easily identifiable cause, and they stop asking questions.

• When it comes to “severe dysmenorrhea” (meaning period pain that's bad enough to disrupt your day to day life in a significant way), it occurs in between 2-29% of menstruating people. I’m sorry, what? Between 2-29%?? I crunched the numbers, and that's the difference between 36 million and 522 million people in severe pain, potentially monthly. We don’t have any better data than that?? Because I can tell you, you KNOW when you’re having severe dysmenorrhea.

• So WHY don’t we know more? Well, one reason is that the NIH didn’t have ANY programs funding the study of women’s health until 1990. It also employed more veterinarians than gynecologists.

It’s no secret that the current state of women’s healthcare in the U.S. is a trash fire, but the things I’ve found in my research into the causes of severe period pain and the history of how medicine has treated period pain have made me…very angry. It’s truly unbelievable the lengths science will go to to not learn about women.

My solution? I’m making a podcast, and I’m pretty sure it’s going to fix everything!

Just kidding. But hopefully, it WILL make this information more accessible, and it will make living with this pain less lonely for those of us who have been quietly abandoned by medicine. At the very least, it gives me an excuse to put a microphone in some doctors’ faces and not let them leave until they answer my questions better.

The good people over at the Simons Foundation’s Science Sandbox have seen fit to award me a grant to produce this show (they’re the ones that got that portal from NYC to Dublin made - the one that just got shut down due to flashing, so you know they have impeccable taste), and I’m currently looking for the right distribution partner. So this is like, a real thing!

Over the next 6 months, I’ll be reading lots of books that make me have to take rage breaks, I’ll be visiting places like the GyRL lab in Evanston, IL to interview doctors actually doing dysmenorrhea research, and I’ll be recording my own appointments with doctors as I try to FINALLY get an explanation for my own pain.

This newsletter is where I’ll share some of the things I’m learning in real time, ask for your own stories about period pain, and let you know about the podcast when it’s coming out! And yes, even if you are uterus-less, this newsletter (and podcast) is still for you.

I hope you’ll stick with me, cause I’m pretty sure it’s gonna be a wild ride.

And feel free to forward this along to anyone in your life who’s looking for answers to their period pain as well!