It's a rare but potentially devastating side effect.

By Health
January 12, 2020
Tat'âna Maramygina/EyeEm/Getty Images

"Freelance full-time," they said. "It will be fun!" And they were right; freelance writing was a great move for me—until a few days before the new year, 2019, when the intense stomach pain started. And not the kind of pain you feel when you eat an entire pizza (just me?) and your jeans are too tight. No, this felt like the equivalent of someone attacking your stomach with a hacksaw…or so I'd imagine.

One minute I'd been chatting in the kitchen with my mom, happy to still be home in Chicago from Minneapolis for the holidays, and the next I was in the fetal position, tears streaming down my face. If I deviated even an inch, I vomited, which I hadn't done in years. So I stayed on the couch, rigid and immobile, through the night, dozing periodically and wondering not only if I were going to make it but, also, why now?

Earlier in the fall, I'd decided to start working for myself. It's always a risk to leave a stable job, but I had the confidence of someone who's admittedly led a life of privilege. I had a supportive family, a healthy savings account, and the knowledge that I could "always find another job" if it didn't work out. It's the same confidence that, when tasked with signing up for health insurance after my employer-sponsored coverage expired at the end of October 2018, told me I'd be okay holding off on a new policy until January 1.

After all, I'd had relatively no health issues to this point, so what were two more months? I even joked to the Patient Protection and Affordable Care Act (ACA) marketplace representative on the phone: "I mean, what's going to happen, right?" I'd called to see if it were possible to enroll for just two months (yep), but sometime during the hourlong wait on the phone, I had decided against it entirely. By that point, I didn't have any other questions either. I was just going to use the open enrollment period to sign up online for 2019 coverage under a plan that made some semblance of sense to me, if only because it was recognizable from past employers. (Here's how to make picking a health insurance plan less stressful.)

All that's to say, I felt helpless and not just a little bit stupid when I realized I couldn't go to the doctor for these gut-wrenching pains because, of course, I was uninsured. I made it through the night and felt better—great, even—for the next few days. But the pains returned that first week of January. I don't consider myself a particularly religious person, but the night my stomach started hurting again, I made a promise to God that if I survived the night, I'd go to the doctor in the morning, whether I felt better or not.

The next morning, when I was supposed to be driving back to Minnesota, I asked my mom, actually, would she mind running over to urgent care with me? Suspecting my gallbladder was the source of these mysterious pains, the doctor referred me to the ER. Thank God I waited until January, I laughed with my mom on the way to the hospital, because who knows what this would have cost me otherwise! (Spoiler alert: Because I was out-of-network in Illinois, I ran up $20K in medical bills. Luckily my insurance appeal went through—a story for another time.)

The hospital did some bloodwork and an ultrasound, and everything looked okay. As fate would have it, though, a nurse asked again if I'd been experiencing any chest pain. When I hemmed and hawed that yes, well maybe, sort of, they doubled back to that bloodwork. Turns out a level was high that might indicate a blood clot, and I had a history of long-term oral contraceptive use (a blood clot risk factor), so off to CT I went. (Wait, what's the deal with birth control and blood clots?)

This is the point in the story when I remind you to tell your doctors everything you've been feeling/experiencing, no matter how insignificant or trivial it seems, and to push them if you feel like something's off.

What My CT Scan Revealed

Anyway, my mom and I were sitting in the ER exam room, having just called my dad to ask him to pick up dinner, as we'd be home soon and were starving, when I overheard a conversation in the hall. "We have a 28-year-old female patient from Minnesota," they said, "with a liver tumor."

Wait, what? Was there another female patient from Minnesota at the hospital? A few minutes later, the doctor confirmed my diagnosis: I didn't have a blood clot, but the CT had incidentally found a tumor about the size of an orange on my liver. I was being admitted to the hospital that night and likely wouldn't be going home anytime soon.

They wheeled me to a private room with its own bathroom, sitting area, and flat-screen TV, a nicer setup than some hotels I've stayed in. But I was, of course, really scared. One thought drummed in my head: I do not. Want. To. Be. Here. It was also a Friday night, so any questions I had definitely weren't going to be addressed then, as health care professionals, like most other professionals, want to enjoy their weekends. (Who knew?)

My parents brought me a few necessities and then went home for the night, promising to return first thing in the morning. It was a long night—my vitals were checked every hour or so; I wasn't allowed any food or drink until they determined what further testing needed to be done; I routinely heard stroke announcements over the loudspeaker, and I had an IV in the crook of my elbow that made it impossible to get comfortable. Plus, did I mention, I was terrified? (Related: This Woman Says She Suffered a Stroke from Doing Yoga)

The next day, two potential theories were floated: the tumor might be a hepatic adenoma, an uncommon benign epithelial liver tumor that develops in an otherwise normal-appearing liver and is often caused by long-term use of oral contraceptives, or an infectious abscess, which couldn't be ruled out because of my aforementioned stomach pain and a slightly elevated fever.

A sobering report from my time in the hospital reads, "The patient has no recent travel history, no IV drug use, no recent surgeries or intra-abdominal infections, no history of appendicitis or diverticulitis. The patient is currently on oral contraceptive pills." (Related: 7 Common Birth Control Myths, Busted By an Expert)

Either way, they needed to do a biopsy and an MRI, all of which happened Saturday afternoon. If you, like me, have ever heard that biopsies are terrible and should be avoided at all costs, let's just say the rumors are true.

By Sunday, both theories were still plausible, and the biopsy results wouldn’t be back from pathology for five to seven days. The doctors recommended I stay in the hospital until then, which sent me into such a panic that they had to bring in an EKG. "Do you have a history of anxiety?" the doctor asked, an easy, albeit incorrect, assumption given that I was clutching my chest and sobbing for no discernible medical reason.

That same (truly great) doctor later consulted with a liver specialist who, along with the infectious disease expert, was able to deduce by Monday that the most likely diagnosis was a hepatic adenoma. And the best course of action was to cease use of the pill immediately, take it easy, and follow up with more imaging in three months, as these tumors can dramatically decrease in size once removed from hormones. I started taking the pill in my early teens, so it's possible my tumor had been growing for years.

I went home, struggled to fully recover from the biopsy for about a week, and then spiraled into a perpetual low-grade panic for the next two months while I waited for my follow-up MRI in early March, which would show my tumor had already shrunk from six centimeters to just over two centimeters with the cessation of oral contraceptives. As of my most recent MRI in September, the tumor was down to about one centimeter. My doctor is hopeful it'll be completely gone by my next scan in a year's time.

"For most women, contraceptives are incredibly safe, but they're not benign,” says Jessica Horwitz, a family nurse practitioner and vice president of clinical services for online birth control provider Nurx. "The component that tends to be the riskiest is the estrogen. There are a lot of reasons why a combination pill might not be right for someone. Progestin-only options are much more limited in scope in terms of who cannot take them." (Here's how to find the best birth control for you.)

The earliest version of the pill, Enovid, contained 10,000 micrograms of progestin and 150 micrograms of estrogen. To put that in perspective, the pill I was most recently on (Nortrel 1/35) contained 1,000 micrograms of norethindrone, a form of progestin, and 35 micrograms of ethinyl estradiol, a synthetic form of estrogen. The original high doses in Enovid increased the likelihood and severity of side effects, like heart attack and stroke, which is why modern options have significantly smaller doses of hormones.

To be frank, I was cautioned many times while writing this to emphasize that anecdotal evidence, like my own, only highlights the ways in which individuals differ in their reactions to medication. Birth control pills, in fact, are still a perfectly good option for many women. (Of women in their childbearing years, about 12.6 percent use birth control pills, according to federal survey data from the Centers for Disease Control and Prevention, CDC.) Plus, questioning the pill remains a privileged position when many women struggle to access even basic health care.

That said, my period has yet to regularly return since stopping the pill. I've since developed acne; my hair is dry and falling out; and I'm bloated, tired, and moody (yes, I'm a real treat). The solution would typically be hormonal therapy, but that's unfortunately not an option for me right now. I count myself lucky, though, that I've so far avoided surgery. (Related: Everything You Need to Know About Going Off the Pill)

A Rare Side Effect That's Becoming More Common

For Michelle Mardon, that wasn't the case. After a combined 13 years on birth control pills, she was diagnosed with a hepatic adenoma at age 29. She had to have major abdominal surgery to remove the tumor and spent six months recovering. She now has a 25-centimeter scar across her stomach.

"The doctor who did my operation says that he sees these all the time," Mardon tells me. "He had operated on a woman the same age as me whose tumor had become malignant. She died a few months later, all because of the pill. That's terrifying and even more so when we aren't talking about it."

In July 2016, comedian Akilah Hughes tweeted, "I JUST HAD SURGERY FOR LIVER TUMORS. BECAUSE OF BIRTH CONTROL PROBABLY." The tumor Michelle and I, and maybe Akilah all had remains exceptionally rare—its incidence is one in a million. But that rises to 30 to 40 cases per million with patients who use estrogen-based oral contraceptive pills, and it's becoming more common.

"With more women using oral contraceptives, the incidence has been rising," explains John Abad, M.D., surgical oncologist and clinical assistant professor of surgery at Northwestern University's Feinberg School of Medicine in Chicago.

Dr. Abad treated me in the hospital and at my follow-up appointments, and he's the one who flagged that, if I ever want to have children in the future, I'll need to be monitored. The surge in hormones during pregnancy can potentially cause hepatic adenomas to grow or recur.

If my tumor grows again to two centimeters or larger, then my gynecologist, Elena Kamel, M.D., at Women's Group of Northwestern and clinical associate professor of obstetrics and gynecology at Northwestern's Feinberg School, recommends radiofrequency ablation prior to attempting pregnancy.

In the meantime, though, she suggested a non-hormonal IUD, like Paragard, as there haven't been conclusive studies to support the use of progestin-only contraceptive options (think the "mini-pill") as a safer alternative for women with a history of liver tumors, she explained. The IUD's potential side effects include severe menstrual pain and heavy bleeding, so not exactly appealing, although neither are methods of natural birth control, like fertility awareness. (Related: Is an IUD the Best Birth Control Option for You?)

At 29, I'm not yet ready to have children, so I have the benefit of time in hopefully righting my system. My follow-up plan of care simply reads, "When planning for pregnancy, this should be closely watched with imaging. These are hormone-sensitive tumors and you should remain off birth control."

This story originally appeared on Health.com by Allison Duncan.

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