The pain came without warning, seizing and releasing into an ache that lingered for hours like a bad guest. Last December was the apex of months of mounting discomfort, which began a year after I got a Mirena IUD, or intrauterine device, a small piece of plastic that sits in the uterus and prevents pregnancy by releasing a local dose of hormones. Coping was a matter of downing Aleve and sending my boyfriend texts like, “My entire body is a cramp,” while I waited for it to pass.
I switched from the Pill to an IUD at a time when many people were opting for this long-lasting form of birth control, which can be hormonal or non-hormonal and remains in the body anywhere from three to 12 years, depending on the type.
It was early 2017, right after President Donald Trump’s inauguration, and I was worried about his administration doing away with Obamacare’s birth control mandate, which required most insurance plans to entirely cover the cost of FDA-approved contraceptives (with some exceptions for name-brand versions). I’d already been leaning in that direction: When someone finds a method of birth control they love, they tend to tell their friends about it, and I have many friends who loved their IUDs.
The cramps built gradually, and for a while I was able to justify their rising cost against the significant benefits of hormonal IUDs: no daily maintenance, a less than 1 percent risk of getting pregnant, and the common side effect of a lighter or nonexistent period. When I went to see my doctor about the pain, she checked the IUD’s placement and made sure that I wasn’t experiencing ovarian cysts, finally pronouncing that my body just didn’t like having this device in it. There wasn’t much she could do besides take it out. I decided to keep it in.
As the pain intensified, it became apparent that I was playing a game of chicken with myself. How much physical anguish could I handle in exchange for the psychic comfort of not worrying about getting pregnant? In January 2019, just a few days after two federal courts temporarily blocked Trump’s attempt to roll back the Affordable Care Act’s birth control mandate, I set up an appointment and had my IUD taken out. Physically, I felt better almost immediately. But even in my relief, I was angry at myself for waiting, and frustrated that something that had been so great for my friends didn’t work out for me.
Birth control is a part of daily life for tens of millions of Americans. The Centers for Disease Control and Prevention found that between 2015 and 2017, nearly 65 percent of the 72.2 million women in the US ages 15 to 49 were using some contraceptive method. Of them, roughly 9 million were on the Pill, and another 7.4 million had long-acting reversible contraceptives (LARCs) like IUDs and arm implants. Bayer, which makes a variety of IUDs and birth control pills, estimates that 33 million women in the US are potential birth control customers.
People with periods — which includes not just cisgender women but also trans and nonbinary people — may not use contraceptives consistently throughout their reproductive years, if they’re not having sex with men or if they want to get pregnant, for example. But many spend decades on one method or another. Irrespective of the obvious and crucial use case of avoiding pregnancy, hormonal birth control is prescribed to alleviate common issues such as acne and period cramps, as well as disorders like polycystic ovarian syndrome (PCOS) and endometriosis, for which there aren’t many treatments.
Birth control is common because it’s hugely important, enabling people to decide for themselves whether their future includes children, and if so, when. This benefits everyone: Women with access to birth control achieve higher levels of education and greater economic stability, which can in turn lift families and communities out of poverty. When someone is able to choose when to get pregnant, health outcomes for both them and their baby improve.
This is why, if you’ve had a poor experience with birth control, you might believe that to complain is to drag down the cause — especially at a time when reproductive rights are under attack. You might wonder if you’re being ungrateful for all the progress in contraceptive safety and efficacy that has been made in the 59 years since the Pill was approved by the Food and Drug Administration, or for having access to birth control at all when many around the world don’t. You might look at all the options on the market — a consumer category unto itself, complete with peppy YouTube ads — and shame yourself for feeling so defeatist. I have.
But here’s another thing to remember: A lot of people struggle to find birth control that works for their body and life. Over dinner dates with friends, in conversations with coworkers, on Facebook groups and Reddit forums, in web comics, and in formal interviews, I’ve heard and read all manner of stories about pills, implants, and IUDs that caused the kind of physical and mental side effects that force a change or make a person ask, over and over, “Is this worth it?” While anecdotal, these experiences aren’t hard to come by. Send up a flare and people will come running.
So when it comes to a medical category that’s so commonplace, that’s used for such large swaths of people’s lives, that has become a true consumer product, you have to ask: Why isn’t contraception better? Why is it so hard to find birth control that works for me?
Birth control has come a long way since 1960. The Pill was approved by the FDA that year, and soon after, life-threatening risks associated with that high-dose pill, namely blood clots and stroke, became known.
Today’s oral contraceptives deliver much lower doses of estrogen and progestin than early versions of the Pill, reducing the risk of potentially fatal events like these. Similarly, the IUD has been radically improved since the disastrous 1971 launch of the Dalkon Shield, which killed at least 18 users and led to infections, hysterectomies, miscarriages, and birth defects in 200,000 more, eventually bankrupting its manufacturer. Though a few reports of death and serious harm have cropped up in recent years, birth control is now considered to be very safe for the vast majority of users.
Over the course of several decades, a host of options have entered the market, beyond existing methods like rubber condoms and the diaphragm, both of which have been commercially available since the 19th century. Most prescription birth control methods prevent pregnancy by using hormones to suppress ovulation, thickening the mucus in the cervix to halt sperm, or deterring a fertilized egg from implanting in the uterus. These can take the form of daily pills, injections delivered every three months, skin patches, vaginal rings, arm implants, and IUDs. The non-hormonal option is a copper IUD, which acts as a spermicide.“WE HAVE TO BE RESPONSIBLE FOR THIS ENORMOUSLY PAINFUL, TIME-OCCUPYING, ARDUOUS PROCESS OF FINDING A BIRTH CONTROL THAT WORKS”
These non-barrier methods options range in efficacy but are all more than 90 percent successful at preventing pregnancy; the IUD and implant, which remain in the body for years and thus eliminate the daily possibility of human error, have a failure rate of less than 1 percent in their first year of use, making them the most effective options.
Choice and bodily autonomy have always been a part of the conversation around contraceptives. When the feminist activists Margaret Sanger and Katharine McCormick teamed up to push for the development of a birth control pill in the early part of the 20th century, writes Elaine Tyler May in America and the Pill, “they believed it was essential that women have access to contraceptives that did not depend on men’s cooperation.”
Women wanted it too. Though the Pill wasn’t advertised directly to women at that point — pharmaceutical companies didn’t start marketing products in the mass media until the early 1980s, previously advertising only to doctors — it didn’t need the boost: 1.2 million women were using the Pill by 1962, and by 1964 that number rose to more than 6.5 million, according to May.
Researchers have been working on an equivalent drug for men for as long as the Pill has been on the market, May writes, and at many points over the decades, news headlines have proclaimed that a breakthrough was near. None have come to pass. In 2016, a male birth control study for sperm count-reducing hormone shots was shut down after participants reported experiencing side effects like acne and mood swings — symptoms that people quickly pointed out (sometimes in misleading headlines about the participants’ perceived wimpiness) sounded awfully similar to ones that women on birth control experience every day.
Several forms of male birth control are now in clinical trials, but in the absence of anything beyond barrier methods like condoms, the responsibility falls to people with periods, as do the side effects. Just as it was in Sanger’s time, having control over one’s fertility remains an empowering proposition, but for some, this imbalance is a bitter pill to swallow.
“We have to be responsible for this enormously painful, time-occupying, arduous process of finding a birth control that works,” says Kate Cornelius-Schecter, a 28-year-old who lives in Chicago and has experienced a variety of negative side effects while using hormonal contraceptives. “It’s infuriating.”
Since the beginning, side effects have been a sticky piece of the birth control discourse. During drug trials for the Pill in the 1950s and after its introduction the 1960s, researchers and doctors often dismissed complaints of headaches, nausea, and depression. “Some doctors and pill advocates, including Gregory Pincus [one of the researchers who invented the Pill], made light of the side effects and minimized the dangers, insisting that the vast majority of women on the pill had no serious problems,” May writes. Playboy editor Hugh Hefner was a vocal supporter of the Pill, a stance reflected in the magazine that included downplaying side effects as “old wives’ tales,” according to May.“I’D RATHER HAVE SOMETHING PHYSICALLY WRONG WITH ME THAN EMOTIONALLY WRONG WITH ME”
Like others, Cornelius-Schecter has persisted in the pursuit of an option that works for her, moving from pills to the NuvaRing to a Mirena IUD and back to the NuvaRing. Birth control is all about choice, but to many, forgoing the most reliable forms of contraception doesn’t feel like an option. It’s a question of how much and what you’re willing to tolerate in the pursuit of bodily autonomy and peace of mind.
Brenna Perez, a 28-year-old filmmaker based in New York and Los Angeles, dealt with depression for years while she was on the Pill. She’d always been proud of her ability to calmly and logically deal with stressful situations or disappointment, but during that time she often found herself spiraling emotionally, unable to reel in her reactions to even small problems. At times she thought, “I guess I’m not the person I envisioned I’d grow up to be.”
Perez only started to feel more like her old, cool-headed self after deciding not to refill her birth control prescription. Months later, she connected the dots, realizing that the timing of her mental health issues matched up with her use of the Pill, and swore off hormonal birth control. She now has a copper IUD, which initially caused severe cramps that she couldn’t dull with over-the-counter pain meds. She experiences menstrual irregularity and the occasional painful, unmanageably heavy period, two common side effects of copper IUDs. But for Perez, it’s worth it not to worry about pregnancy.
“It beats being depressed, and it beats not being in control,” she says. “I’d rather have something physically wrong with me than emotionally wrong with me.”
As with many drugs, the side effects of birth control come in all kinds of individualized flavors, and with the guidance of a doctor, patients may have to test out a bunch of methods before identifying the best one for themselves. Playing guinea pig can be exhausting and demoralizing; some people settle for a good-enough option, and some give up on birth control entirely. It doesn’t help that physician care is often flawed, too.
Birth control is a trial-and-error process because at this point, gynecologists don’t have the data necessary to be predictive about who’s going to have a bad reaction to a particular contraceptive. They can advise patients about certain contraindications: Estrogen-based birth control, for instance, poses an elevated risk of blood clots, particularly to people who are older, obese, heavy smokers, or otherwise predisposed to them. But in other cases, what’s fine for one person might cause untenable — if not life-threatening — side effects in another.
“There’s a lot about the hormonal chemistry in each individual woman that we don’t understand,” says Caryn Dutton, medical director of the gynecology clinic at the Harvard-affiliated Brigham and Women’s Hospital in Boston.
A true trial-and-error approach, it should be noted, is only possible if the cost of birth control isn’t a consideration for the patient. Mary Alice Carter, executive director of the reproductive rights group Equity Forward, says the Affordable Care Act’s zero copay policy for birth control has been a game changer: It allows patients to use the contraceptive that’s best for them, not the one that’s cheapest. Trump’s desire to dismantle the ACA, she adds, puts that at risk.
In the search for a form of birth control that works for you, having a good working relationship with your doctor, and a relationship that lasts more than one office visit, is paramount. This, however, leads us to the second hurdle: Because not all of the birth control side effects that patients report are backed up by major studies, some people find that their doctors aren’t willing to listen to their concerns.
Combination estrogen-progestin pills, for instance, have proven side effects like irregular bleeding, headaches, breast tenderness, bloating, and nausea, but have not conclusively been tied to reduced libido and mood disorders, and do not appear to have a link to weight gain. (When I asked whether side effects might be underreported in these studies, Dutton said that, if anything, participants likely overreport them, since they’re given suggestions for symptoms to look out for.) The gap between the literature and people’s experiences can create distrust if the physician expresses doubt in a patient’s testimony, which of course gets in the way of finding a solution together.
A crucial part of Cornelius-Schecter’s birth control journey was finding a doctor who listened to her concerns. A year and a half after getting a Mirena IUD, she started growing hair on her face and neck, and began experiencing depression and low sex drive, none of which had been a problem for her before. Her doctor diagnosed the hair growth as a symptom of polycystic ovarian syndrome, though she didn’t have any cysts; when she reported that she’d also gained weight on Mirena, her doctor dismissed the complaint as body dysmorphia.
Cornelius-Schecter says these symptoms tanked her normally high self-esteem. An actor, she was keenly aware of how her appearance affected her job prospects, and in an effort to curb the hair growth, she tested out testosterone-lowering diets, took up boxing, and sought out laser hair removal. When her libido took a nosedive, so did her partner’s; “it became a feedback loop of problems,” exacerbating issues they were already having in their relationship. They broke up.“THERE’S A LOT ABOUT THE HORMONAL CHEMISTRY IN EACH INDIVIDUAL WOMAN THAT WE DON’T UNDERSTAND.” —CARYN DUTTON, GYNECOLOGY CLINIC MEDICAL DIRECTOR
When Cornelius-Schecter eventually had her IUD taken out, her sex drive returned, she lost weight, the hair growth stopped, and her mood improved drastically. She now goes to Planned Parenthood for a NuvaRing prescription, and says that unlike her previous doctor, the clinic’s staff always seems willing to talk through her concerns. She’s a carrier for a genetic disorder that raises her risk of blood clots, a problem also associated with estrogen-based birth control like NuvaRing.
Overwhelmingly, the gynecologists I spoke to for this story emphasized the importance of validating patients’ experiences, which Dutton says has become more common as gynecology and the medical field at large have evolved away from a paternalistic approach to prescribing drugs with limited patient input. (Previously dominated by male physicians, gynecology has also seen a marked shift toward female doctors.) Jody Steinauer, the director of the Bixby Center for Global Reproductive Health at UCSF, says that when she encounters patients reporting side effects that aren’t backed up by the literature, she nonetheless chooses to believe that person. The field at large may be moving in this direction, but it’s not there yet.
“Many physicians and clinicians aren’t good at that,” Steinauer says. “Patients will tell me about an experience they have where, in my understanding, I can’t even conjure up a justification for why that would be true, and I have to be humble and say, in my own mind it doesn’t make sense to me that this would happen, but this is the patient’s experience. I’m not going to argue.”
In general, doctors have a poor reputation when it comes to believing and investigating women’s concerns. Health problems such as PMS, endometriosis, and complications during pregnancy and childbirth are routinely brushed off by doctors and taken less seriously than issues affecting men. This is particularly true for black women, for whom the maternal mortality rate is three to four times higher than it is for white women — even if they’re a world-famous athlete and businessperson like Serena Williams.
Dutton acknowledges that she may be more willing than other doctors to sit down and have in-depth conversations about different birth control options because she has a particular passion for family planning. Not all offices prioritize this kind of interaction.
“It takes time, and time is a huge commodity in medicine,” Dutton says. “It seems to me that this was more an expected part of the experience at a clinic than in a busy primary care office.”
“That hand-holding is really helpful when you’re in an insecure position,” Cornelius-Schecter says of her experience at Planned Parenthood. “They’re always verging to the side of empathy.”
A few months after getting my own IUD out, I went to Planned Parenthood for a birth control consultation. I wasn’t necessarily ready for a new prescription, but I wanted to restart the conversation. Sure enough, the staff made me feel like my past experiences and present concerns were completely legitimate. All it takes is one nurse with a big laugh and a willingness to share her own birth control troubles to make you feel like you’re not going through this alone.“IT TAKES TIME, AND TIME IS A HUGE COMMODITY IN MEDICINE.” —CARYN DUTTON
What I didn’t get, though, was a fairy godmother who could magically discern which birth control would be best for me. It wasn’t until I left the Planned Parenthood that I realized how badly I’d been hoping for this outcome, even though I knew it was scientifically impossible. A medical professional can validate your experiences, and that helps a lot, but they can’t make birth control any less trial and error. All they can do is support you through it.
While some approaches to contraceptive counseling focus on guiding patients toward the most effective forms of birth control, Steinauer at UCSF believes that this can feel coercive, especially to groups that have historically been the target of forced sterilization efforts, namely people of color. Instead, she centers the conversation on the patient’s priorities regarding efficacy, delivery method, and side effects.
Some people are okay with the possibility of getting pregnant, and will live with a less reliable option if it means fewer side effects. Some may worry about forgetting to take a pill every day, making them good candidates for an implant or IUD, while others might want to administer their own medication. Based on the patient’s unique desires, Steinauer will narrow down the available options, and they’ll begin from there.
This way of working puts the patient in the driver’s seat. It’s quite different from how things were when Steinauer began taking birth control as a teenager in the ’80s.
“When I first started on birth control, the doctor said to me, I’m going to start you on this specific pill because I have stock in this company,” says Steinauer, who recalls feeling horrified when she heard that.
The Physician Payments Sunshine Act of 2010 requires medical manufacturers to disclose payments of more than $10 to doctors and hospitals, but providers today still receive millions of dollars annually from drug companies, for everything from consulting and speaking gigs to travel and lunches. Still, it’s hard to imagine most doctors being that brazen about an obvious conflict of interest now.
When I asked Steinauer if her experience informed her desire to become a gynecologist herself, she said that she’d already been interested in the field, but “it really fired me up, for sure.”
The possibility of finding a suitable contraceptive is capped by what is on the market and what innovations drug companies and research groups are prioritizing. “Women today have a lot of great options, but our journey is far from over,” writes Régine Sitruk-Ware, a scientist at the Population Council’s Center for Biomedical Research, in an email to me. Indeed, there is no universally perfect form of birth control yet. A 2012 study about birth control preferences found that for 91 percent of respondents, there was no available contraceptive that had all the features they wanted — the most commonly cited ones being effectiveness, affordability, and lack of side effects.
A spate of new contraceptives came out in the late ’90s and ’00s, Sitruk-Ware says, including Mirena, NuvaRing, and Implanon, an arm implant; Dutton recalls that when she was in training, prescription contraceptives were limited to the Pill and the injection. But as Maya Dusenbery writes in a recent Scientific American feature titled “Why Women — and Men — Need Better Birth Control”: “Nearly 60 years after the first oral contraceptive pill was sold, most prescription birth-control methods are variations on the same synthetic hormones that have always been used.”
Today, we see drug companies releasing fewer new types of contraceptives and more iterations on existing forms of birth control, reengineered to be safer, more effective at preventing pregnancy, and longer-lasting. There’s a clear financial incentive for that: Bringing a new format to market can take upward of a decade and requires tremendous financial investment.
The contraceptives R&D landscape spans researchers at universities whose work is funded by the National Institutes of Health (NIH) and groups like the Society of Family Planning; nonprofit research organizations like the Population Council, which develops new kind of contraceptives; and major pharmaceutical corporations like Bayer, Merck, Pfizer, and Johnson & Johnson. Generally speaking, safety and effectiveness are the top priorities in current birth control research, with significantly less attention paid to side effects that the industry has deemed not explicitly unsafe.
“In the world of birth control, the focus has been on how do we keep women from getting pregnant, how do we make methods better, and how do we make user error less, which is why we’ve had the push for IUD and implants,” says Aaron Lazorwitz, a contraceptives researcher and assistant professor at the University of Colorado School of Medicine. “There’s just been kind of a lack of focus on the prevention of side effects.”
There are some labs working on novel forms of birth control, like the Oregon Permanent Contraception Research Center, which received money from the Bill & Melinda Gates Foundation to explore the use of polidocanol foam, currently used as a treatment for varicose veins, as a non-hormonal, non-surgical permanent contraceptive that, once inserted transcervically, blocks sperm from reaching an egg.
Also on the non-hormonal, but non-permanent, front, Sitruk-Ware says there are researchers working to identify “several targets of the ovulation process and screening molecules that could prevent the action of these targets (either enzymes or proteins specifically involved in the cascade of events leading to ovulation),” as well as vaginal gels in development that would be inserted before intercourse to prevent pregnancy and certain sexually transmitted infections.
At the same time, there is also a push to introduce over-the-counter birth control pills, which could radically increase access to contraceptives.
Lazorwitz sees potential in pharmacogenomics, the study of how someone’s genes affect their reaction to a particular drug, to give doctors the information they currently lack about how to predict what forms of birth control will give a person undesired side effects. Pharmacogenomics is still very much in its infancy; though we’ve mapped the human genome, we still don’t know what a lot of it does, nor do we know which of the thousands of variations in an individual’s genetic code affect how a particular gene works. Thus far, it has been applied to drugs used in internal medicine, cardiology, and oncology.
Some of that research could translate into contraceptive health care, says Lazorwitz, but it would be a challenging path. You’d need to set up a large-scale study, see what side effects the participants experience, and then look at the whole or parts of their DNA to see if there’s a pattern. This isn’t easy: There are millions of little differences in people’s DNA. Then that research would need to be replicated, to confirm that it wasn’t chance.“UNFORTUNATELY, THE NIH HAS MOVED FUNDING AWAY FROM THE STUDY OF HORMONAL CONTRACEPTION FOR WOMEN.” —JEFF JENSEN, CONTRACEPTION RESEARCHER
“It’ll take time, and the important thing is that even if we do find them, there’s still a lot of patient preference and other things that go into the consideration for birth control,” Lazorwitz says. “This won’t replace it. If someone really wants the best birth control we have, that’s an IUD or implant. It’s more that maybe we can help them know their individual risk of side effects down the road, let them know that they’re at a higher risk of headaches or weight gain.”
In the pursuit of better contraceptives, there’s also the question of funding, especially during a presidential administration that is openly seeking to limit access to birth control and recently stripped federal funding from Planned Parenthood. The NIH’s National Institute of Child Health and Human Development (NICHD) is the main source of funding for biomedical research, including contraceptive research. Sitruk-Ware says that financing from governmental agencies has decreased over time “but is still maintained.” Though NIH contraception investment estimates from the past five years don’t show a clear decline, the Guttmacher Institute reported in 2010 that funding in general, including from the NICHD, had dropped by tens of millions of dollars since the 1980s, adjusted for inflation.
Jeff Jensen, the head of the Oregon Permanent Contraception Research Center, put it bluntly in an email: “Unfortunately, the NIH has moved funding away from the study of hormonal contraception for women.”
At pharmaceutical companies, Scientific American reports, investment in birth control R&D “has cooled in the past decade.” While the pace of new contraceptives entering the market has slowed, a handful of telemedicine startups have taken it upon themselves to make birth control easier to access and navigate, including Pill Club, Nurx, and Hers, an offshoot of the men’s health startup Hims. They add a second layer of branding to the marketing of birth control, with their friendly, millennial-chic aesthetic and Silicon Valley focus on seamless customer service. In typical startup style, however, that veneer has cracked. The New York Times reported that Nurx, which has raised millions in venture capital, sent customers birth control pill packs that were originally prescribed to other patients.
Nick Chang, a former med student who worked in women’s health clinics before founding Pill Club, which is registered as both a medical clinic and a pharmacy, says its direct-to-consumer business model can make managing prescriptions and switching medications or dosages easier. Clients can send in real-time feedback about how they’re getting on with side effects, which is considerably easier than going to a doctor’s office or getting a physician on the phone.
Pill Club, Nurx, and Hers offer a wide variety of birth control options — Pill Club alone offers more than 150 kinds of pills as well as NuvaRing and emergency contraceptives, delivering to 38 states and DC — but their innovation is in the way people access birth control, not in the products themselves. Even the disruptive style of Silicon Valley is bound to what’s already on the market.
Even after visiting Planned Parenthood, I decided to prolong my time off birth control by a few months. It made me nervous, but I also didn’t feel ready to plunge back into the hormonal unknown. What eased my shakiness was the knowledge that many, many people have gone through something similar. That doesn’t make it right, but it makes it more bearable.
Indeed, when birth control experts don’t seem to be providing sufficient answers, patients will do what they’ve always done: They’ll turn to each other. There are discussions of birth control happening among friends and in Facebook groups and Reddit threads full of strangers. Birth control users often solicit recommendations from one another or offer them unprompted, and these communities can provide much-needed affirmation that someone experiencing unusual side effects isn’t just imagining things.“OTHER PEOPLE ARE EXPERIENCING THIS TOO — I’M NOT CRAZY. IT DOES GET TO THE POINT WHERE YOU THINK YOU’RE CRAZY.”
Jessica Dick got a Nexplanon implant in 2014, when she was in college. She describes herself as “very forgetful,” so she decided against the Pill, and she knew she didn’t want kids for at least three years, so the long-term nature of the implant seemed like a good move. The same day she got her implant in, her boyfriend proposed. They got married two months later.
For the first six months, Dick experienced constant spotting, requiring her to wear underwear liners at all times. To regulate the bleeding, her doctor prescribed her a birth control pill to take on top of the implant, which did the job but gave her migraines. She stopped the Pill after a little over a week, and eventually the spotting tapered off.
A year in, Dick started experiencing fainting spells, the first of which happened while she was driving on the highway, as well as severe anxiety and depression. She suspected this was related to Nexplanon but says that doctors disagreed. The commenter community on the period tracking app Glow — a leader in the booming and questionable “femtech” space — corroborated her suspicions, however.
“The majority of people who answered my questions [about Nexplanon] said they loved it, but I did get a few that said, ‘I’ve been having a lot of anxiety lately,’” says Dick. “When I heard that, it was like validation for what I was thinking. Other people are experiencing this too — I’m not crazy. It does get to the point where you think you’re crazy.”
Ultimately it was a tingling and numbness in Dick’s arm that brought her in to see a doctor, who tried and failed to locate the implant in her arm. Dick’s physician referred her to a surgeon who did an ultrasound and found the implant about an inch away from where it should have been, and two inches too deep, buried between bone and muscle. They scheduled a removal surgery in the operating room, rather than a doctor’s office, as is common for implants. It took two and a half hours to extract, Dick says.
After surgery, Dick posted a photo of her purpled, scarred arm on Facebook to let her friends and family know what was up. It went viral.
“Within the next 24 hours, it got thousands and thousands of shares,” Dick recalls. “I had messages from girls who were like, the same thing happened to me! It was crazy.”
Today, the post has 189,000 shares. Dick still hears from people about it, many of them wondering why Nexplanon went south for her or asking if they should get theirs out too. The massive response can feel empowering at times, but also overwhelming. Dick isn’t a doctor, and says that she often doesn’t know how to answer other people’s questions.
Strangers on the internet aren’t necessarily the best source of medical advice, but Dick’s experience is telling: There is a gap between the medical establishment and patients when it comes to negative experiences with birth control. Something isn’t clicking, and in the absence of trust or information, people lean on one another for support instead. They want validation.
In my interviews with birth control users, the idea of gaslighting oneself came up numerous times. Some say they believed the symptoms they experienced were just “how their bodies were,” only to realize after switching prescriptions for unrelated reasons that what they were experiencing was deeply off. It’s a brutal feeling, to realize that you were voluntarily putting your body and mind through hell and didn’t even know it.
Nina Frazier-Hansen, a 32-year-old who lives in New York, had a copper Paragard IUD for nearly a decade that caused her to have heavy, long periods with noticeable clotting and odd smells. Her doctor told her this was all normal — again, copper IUDs are known for inducing heavy periods — and Frazier-Hansen, who had been on a hormonal pill as a teenager, accepted that this was her body’s normal state. That came with considerable distress every month, though.
“I’d sit on the toilet and tell my husband, ‘I hate being a woman. It sucks. It just sucks. I don’t know why I have such a heavy period; I don’t know why it looks like this and smells like this,’” she recalls.
It was only when she saw Reddit commenters describing similar experiences with Paragard that she realized this didn’t have to be her normal. Frazier-Hansen had the IUD taken out while she was on her period, per the device’s guidelines, and found it “mind-boggling” to watch her body acclimate back to less clotting and more normal-looking blood.
“It felt like something I could manage again. I broke down in tears,” she says. “It’s crazy to think that I could have just thought I had somehow deserved this, and that it was my burden as a woman to deal with this period that was causing me a lot of stress and embarrassment.”
Frazier-Hansen and her husband are confident they don’t want children, and last year, her husband got a vasectomy. For the first time ever, birth control isn’t her responsibility.
By Eliza Brooke