reproductive health

My Period Pain Was Not ‘Normal’

Why did I have debilitating cramps for 18 years?

Photo-Illustration: Josiah Whitfield; Photos: Getty
Photo-Illustration: Josiah Whitfield; Photos: Getty

I’ve struggled with severe period pain three days of every month for the past 18 years. That’s about 648 days when I’ve had cramps that felt like someone was stabbing my insides, heavy bleeding that ruined more pairs of underwear than I can count, and waves of nausea that prevented me from doing even the most basic tasks. Taking the maximum dose of painkillers alleviated my symptoms only briefly. I’d dread how tired I’d be the next day while doubled over in pain on the toilet, wondering if I needed to throw up or empty my bowels. Sometimes, I’d faint from the intensity of my cramping— a rare but embarrassing incident, whether I was 14 at dance rehearsal or 25 in the bathroom of my childhood home. My pain was so debilitating that I’d miss classes, work, birthdays, holidays, and anniversaries.

When I was growing up, my mami used to tell me painful periods just ran in the family. When she was a teenager, her cramps were so brutal that she’d faint regularly; she said it got better in her mid-30s, when she gave birth to my younger brother, and maybe that would be the case for me if I ever had children. I was in college when I started seeing a string of gynecologists about my period pain, and their universal response to my description of my symptoms was skepticism, if not downright mistrust — as if the extreme pain and bleeding I experienced were an acceptable trade-off for the ability to reproduce. When I began spotting in between periods a few years ago, my then-doctor told me — without further examination or even follow-up questioning — that I was likely one of the 5 percent of people who experience ovulation spotting. “It’s normal. Good on you for noticing when you’re fertile,” she said, before asking when I would have children.

These doctors told me that I was experiencing dysmenorrhea — a catchall medical term for severe, frequent, and painful period cramps that impacts about three quarters of all women during their reproductive life — but none looked into what was causing it. Medical literature has shown over and over again that women’s pain in general is taken less seriously than men’s, and yet there are many common health issues among women and other people of reproductive age that manifest varying degrees of pain, including uterine fibroids, endometriosis, polycystic-ovary syndrome, and endometrial polyps. The internet is full of accounts from people with more severe conditions than me who were treated appallingly by those who are supposed to take care of them.

Sarah Michal Hamid, a full-spectrum doula and birth worker based in Honolulu, Hawaii, tells me that when she began menstruating, she would experience extremely painful periods that included nausea, bloating, and acute fatigue. Her father took her to her primary-care doctor, who told Hamid to take ibuprofen. When she said she already did, the doctor referred her to an OB-GYN. “They put me on the pill. No questions asked,” she says. “I was 13.” By the time she went to college, her symptoms had worsened considerably. She bounced around between eight OB-GYNs, trying to find out what was wrong with her. “One told me just to have a complete radical hysterectomy, one told me it was completely normal, one told me it was probably all in my head, and one referred me to an addiction therapist because they thought I was trying to get pills,” Hamid, now 21, says.

A breakthrough came by chance, when she fainted during a meeting with her college professor. The professor told Hamid that her symptoms sounded very similar to those of her wife, who has endometriosis. The professor connected Hamid with her wife’s doctor, who saw Hamid within a few days and diagnosed her with the condition. The treatment plan included surgery, an IUD, and pelvic-floor physical therapy. “It felt like a miracle,” Hamid says.

Not all physicians are ill-intentioned when treating women. “They are not setting out to be racist and misogynist, but they are in a system that invites these errors and biases,” says Dr. Karen Lutfey Spencer, a professor of health and behavioral sciences at the University of Colorado, Denver, who has researched medical decision-making and patient-provider relationships. “One of the big factors is that most of — an appalling amount of — our medical knowledge is based on studies of white men.” In 1993, federal law began requiring clinical research funded by the National Institutes of Health to include women and minorities, and yet research on women’s health issues remains woefully underfunded. This lack of knowledge bleeds into the way physicians treat patients: Their training is limited, and, often, they inherit institutional biases. “There’s a lot of tradition of treating women with ‘Well, it must be in your head.” Spencer says. “The more common language now is ‘Maybe you have depression or anxiety.’”

Not only did I feel like my previous doctors didn’t believe the extent of my symptoms, but I also felt they didn’t spend time trying to make sense of them. The current medical system — where doctors have to see a lot of patients in a short amount of time and must put a diagnostic code on a patient’s file in order to get paid by insurance companies — “is not the optimal situation to figure out a puzzle,” Spencer says. So physicians told me over and over that there was nothing they could do about my painful cramping, and every month I memed my period to cope. Posting a picture of a cute, smiling Kirby holding a knife as an analog for my uterus and seeing the replies roll in reading “same” made me feel a bit less alone.

Last year, I moved to a different state and had to find a new OB-GYN. After the routine checkup, she asked whether there was anything else she should know. I shrugged and gave the same spiel I’ve been giving providers for years, but this time, she didn’t meet my concerns with more painkillers. She said my symptoms were worth investigating with two simple steps — blood work and a transvaginal ultrasound — just to be sure that everything was okay. No physician had ever suggested either procedure, nor had I known I could ask for them. A few weeks later, during the ultrasound, she pointed on the screen at a uterine polyp — a growth attached to the inner wall of the uterus that affects about 24 percent of people. Not much is known about why these polyps develop, and doctors tend to just monitor their growth unless they disrupt a patient’s quality of life.

Half-naked, with my legs up in stirrups, I began crying. I tried to explain to the doctor between sobs that I was fine, and God it’s so stupid but holy shit you listened to me, thank you. She was kind enough to hold my hand and pass me some tissues. She did it again when we moved to her office and I cried while we discussed a hysteroscopy — a simple and safe outpatient procedure to confirm the presence of a polyp and remove it. At home later that evening, I felt my gratitude harden into anger. Why had it taken so long to get a diagnosis and treatment? What if my polyp was the rare one that was cancerous? What if the doctor found something worse than polyps?

Hamid told me she asks herself similar questions. She now suspects that her endometriosis may have been connected to a miscarriage she suffered at 16 after getting pregnant while on birth-control pills, which she says physicians overlooked. Inspired by the care the doctor who diagnosed her offered, Hamid’s plan now is to become a certified nurse-midwife and support patients who face similar reproductive-health struggles. “The biggest difference between my OB-GYN and other doctors is that she understood she needed to listen,” Hamid says. “I shouldn’t have had to fight for myself like that in order to be seen and get health care. What I was asking for was the bare minimum: treatment, pain management, someone who recognized me.”

When I went in two months later for the hysteroscopy, I found out I had more than one polyp. The largest was around two centimeters in diameter: a tiny giant wrecking my insides every cycle. My doctor got them all, and my menstruation days have improved since. Gone is the need to take the maximum recommended amount of painkillers; the nausea and dizziness; the doubling over in tears as a wave of cramps hit me. I’m not pain-free, but for the first time in my life, it actually feels manageable. One pill is enough to allow me to go on with my day. All it took to change my life was for my doctor to show me empathy, and I wish more health-care providers did the same.

My Period Pain Was Not ‘Normal’