Lena Dunham cancelled her press tour because of it. Padma Lakshmi wrote about it in her now best-selling autobiography. Halsey tweets prolifically about her struggles with it.
Recently, women with endometriosis, a disease that affects women’s reproductive organs, have been open and honest about this debilitating condition in ways that I so wish someone, anyone, had been years ago. Back then, I had no idea that what was happening to me wasn’t normal.
My endometriosis started when I was 10 years old. Right before our daily swim in the lake at summer camp, I felt the first twinge of a pain that would kick off a decades-long ordeal: my first bout of menstrual cramps. Not knowing what it was then, I told my counselor my stomach hurt. She sent me off to the infirmary, where the nurse told me that I must’ve eaten something and asked me to lie down. Two days later, still in my shapeless little-girl body and print shorts, I got my first period.
Like it is for a lot of girls, getting my first period was confusing. But for me, that confusion lasted far longer than it should have.
Through my teens and 20s, my cramps returned monthly, and they always seemed to be worse than my friends’ were. I remember once, when calling a friend to cancel because of cramps, she asked me, “Can’t you just ignore them and come out anyways?” Apparently that was her technique for dealing with cramps. I was in awe at how easily she could turn her attention away from what was for me a monthly body slam.
My doctors put me on birth control, prescribed me heavy-duty pain medication, and sent me on my way. I read endlessly about how to manage cramps, bought tinctures and teas and buckets of pain meds, took baths and avoided caffeine — all with little relief.
I assumed my level of pain was par for the course for women. It’s almost funny now how I always wondered why other people had so much more energy than I did, and why I sometimes would have intense gastrointestinal upsets without any obvious cause. Yet I never connected it to my period.
It wasn’t until I was 30 years old and could barely walk, focus, or work for over a week that I questioned the conventional wisdom around women’s menstrual pain. I hobbled into my doctor’s office in tears, and the first diagnosis she gave me was stress. I left her office confused, but the pain went away after my period passed, so I didn’t worry about it. Until it came back twice as strong the following month. I went back to my doctor, and she told me it was stress again. It took me about six months of showing up at her office doubled over before she ordered (inconclusive) tests, referred me to a GI doc (who also found nothing wrong with me), and then finally sent me to a gynecological oncologist. (Nothing like getting sent to a cancer specialist to put you at ease. I had no idea what was happening to me.)
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Like it is for a lot of girls, getting my first period was confusing. But for me, that confusion lasted far longer than it should have.
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After an ultrasound and an MRI, that specialist told me he saw tissue that was most likely endometriosis. He explained what that meant: My uterine lining, which is supposed to build up inside the uterus before being released during my menstrual cycle, was actually building up outside my uterus.
In endometriosis, this tissue, though it’s growing in the wrong place, acts exactly like the endometrial lining: It builds up and then sheds when it’s period time. But because it’s outside the uterus, it has nowhere to go. It can cause growths and adhesions between abdominal organs. This can be incredibly painful and often leads to digestive issues, fatigue, and infertility — but it’s not deadly. The doctor gave me the following options: Try hormonal birth control to manage the symptoms, or have surgery to remove the tissue.
After wondering for so long, I was so relieved to have a diagnosis. But I wasn’t sure what to do. Surgery seemed extreme, but I’d tried birth control already. I dove into researching it the same way I researched my cramps so many years ago. What I found out was startling: Endometriosis is a disease that impacts one in 10 women, or more than 7 million Americans, according to the World Endometriosis Research Foundation. Yet most of them wait a long time, as I did, to find that out.
“Endometriosis takes an average of seven to 10 years to diagnose in the U.S. Unfortunately, this disease is not prioritized as physicians go through training," explains Tamer Seckin, MD, an endometriosis specialist who co-founded the Endometriosis Foundation of America and recently published The Doctor Will See You Now; Recognizing and Treating Endometriosis. “The symptoms can be confused with other conditions, often IBS or appendicitis,” he says.
Endometriosis isn’t a medical research priority, either, even though it impacts more than 6 million Americans. Last year, for example, the U.S. National Institutes of Health (NIH) spent $7 million in research funds on it, compared to the roughly $1 billion that was spent on research for diabetes, which affects about 29 million Americans. And so it doesn’t seem like a coincidence that there’s a lot of conflicting and inconclusive information about what causes endometriosis and how it works.
What’s worse, in some ways, is that information on how to live with endometriosis is also pretty inconclusive. Women gather online to trade info on diet and supplements that might help reduce the inflammation, exercise routines that don’t aggravate the pain, and experiences with medical and surgical solutions. These forums can be supportive and helpful, but it’s hard to know what piece of advice is best.
First, I decided I’d try continuous birth control (which is basically the pill without that sugar-pill break), which stopped my period fully. It reduced the pain a bit, but caused intense mood swings. I still spent plenty of days at work in a haze of Percocet and half-dulled pain, trying to fake being professional. Other days I spent in bed with a heating pad and a cloth soaked in castor oil across my belly. Every week, I went to acupuncture, a nutritionist, and a pelvic-floor physical therapist. I downed a daily arsenal of supplements from an old-lady pillbox labeled with days of the week. I changed my diet multiple times, at turns cutting out gluten, dairy, red meat, sugar, caffeine, alcohol; for one extremely boring six-month stint I cut out all of them at once, to little effect. I gave up on exercise because it triggered more pain.
Worst of all, I missed out on dinners, trips, parties, and many other moments with friends and family. I couldn’t make it to my own going-away party before I moved back home after studying in Indonesia, and I had to cancel my own birthday party. I lost touch with many friends. I knew a hell of a lot of what was happening on Netflix, but not much about life beyond my bedroom.
So finally, I went to a surgeon. I didn’t have much to lose. The surgeon conducted a laparoscopic procedure, making three little incisions to insert a camera and surgical tools. She looked around and removed what she could find. I hoped that surgery would finally ease my pain, but it mostly just confirmed what the specialist told me: Yep, it’s endometriosis. Sadly, there was a lot more tissue in places that the surgeon couldn’t reach.
By the end of last year, I was spending two weeks a month in bed with a heating pad and painkillers, zoning in and out of Netflix and hoping that tomorrow would be better. I signed myself up for another surgery, this time with one of the few surgeons in the country who specializes in my disease.
My doctor spent about three hours removing every scrap of endometrial tissue. He removed my appendix, which had been overrun by the disease. And, with the help of a colorectal surgeon, he pulled apart the adhesions that had developed on my bowels. It was unnerving to go under the knife again, but finally I got good news: With all the tissue gone, the chances of my endometriosis returning are slim.
It took more than two decades, but I’m finally feeling better. And on the far side of this ordeal, I’ve started to understand why it took so long for me, as it has for many others.
Before women even get to the doctor, there are barriers. Since the curse of Eve, the cultural narrative has been that it’s normal for women to suffer during their periods. There’s no measure for how much suffering is too much, and it’s hard for women to flag what’s abnormal.
“Shame and stigma around periods from family or culture can impact the delay, too,” says Arielle Dance, an endometriosis advocate who is working toward her PhD in Integrative Medicine. “Women are less likely to seek help for discomfort when their family never talks about periods.”
Doctors are affected by this narrative as well, by not taking women's complaints seriously. My doctor told me that my pain was just stress, and I’ve heard many stories of women who were told that their symptoms were nothing to worry about — or worse, that they were just in their heads. “My doctors kept saying I had a stomach virus,” Dance adds.
So, what can we do? Breaking down the taboos around menstruation, educating the public about what is normal and abnormal when it comes to period pain, and getting more funding for endometriosis research is key to helping the estimated 176 million women struggling with endometriosis live normal lives.
At least more is being done now to focus attention on the disease. As more celebrities like Dunham, Lakshmi, and Halsey are openly discussing their struggles with it, attention is growing.
But in the meantime, women need to feel empowered to be vocal about pain if it disrupts their life. Some cramps are normal, but if your period pain is chronic, goes beyond your time of the month, or keeps you from living your life, it’s not okay. "Women who are not getting relief should not be afraid to seek a second or third opinion,” Dr. Seckin says. “Killer cramps are not normal.”