Stop brushing off blood clots linked to birth control, say 3 women who could have died from pill-linked clots

• The risk of birth-control-linked clots is being used to demonstrate the safety of J&J's vaccine.
• The comparison is true but can be dismissive of women's sometimes deadly experiences on the pill.
• Insider talked to three women who had life-threatening clots on combination oral contraceptives.

On Christmas Eve 2014, Melissa Firicano baked cookies with the little girl she nannied, had her car washed, and watched a movie with her then-boyfriend, Daryn. Then, she had a stroke.

"I went to the bathroom, and I just fell over and hit my head on the side table," Firicano, now 38, told Insider.

When Daryn, who is now Firicano's husband, called for her after returning from a late-night dog walk, she didn't respond.

"I couldn't answer him. I couldn't talk," Firicano said.

At the hospital, Firicano underwent surgery to remove the clot in her brain. She was 32 years old, healthy, and didn't smoke. But she had been on a birth-control pill since about age 20 and, she learned years later, has a genetic mutation that makes clots more likely among people who use hormonal contraceptives.

"I was like, 'OK, no one ever told me this,'" said Firicano, who still gets physically and mentally fatigued enough to limit her job prospects and time playing with her 2-year-old son.

After the Centers for Disease Control and Prevention and Food and Drug Administration recommended a pause on Johnson & Johnson's COVID-19 vaccine over six reports of brain blood clots in people who received the shot, experts and laypeople alike stressed how rare that was by comparing it to the far greater but still rare likelihood of getting a blood clot while on birth-control pills.

But that narrative, in addition to missing important nuances, sometimes takes the tone that birth-control-linked clots are no big deal and overlooks the real women who have suffered and, in some cases, died from them.

"It really concerns me when people brush off the risks of blood clots because the number of deaths linked to clotting is high," said Alea Hill, a 34-year-old in Charlotte, North Carolina, who was diagnosed with deep-vein thrombosis (DVT) while using a vaginal ring that contains both estrogen and progestin.

In many cases, she said her doctor told her: "People do not experience any symptoms before it's too late."

The risk of clots on the pill could be compared to a rare, serious event like injury from a car crash

Estrogen, a hormone in combination hormonal-birth-control methods like the pill, increases the risk of any type of blood clot. That's because it prompts the body to produce more of the plasma that helps blood stick together.

Still, pill-associated clots are quite unusual, and even more unusual than decades ago when birth-control pills tended to contain higher levels of estrogen.

While research on their prevalence is flawed - some studies rooted in older iterations of the pill, and most able to show only a link, not causation, between contraceptives and clots - the risk can generally be compared to rare but serious events like a car crash, Dr. Melanie Davies, a gynecologist in London and professor at University College London, told Insider for an earlier story related to the blood-clotting risks of the AstraZeneca vaccine.

"For 10,000 women over a year, one to five will have a blood clot anyway, and on the [pill] that rises to three to nine, so it is still less than one in 1,000 chance," she said.

The risk is much greater during pregnancy, and in the three months after childbirth, as many as 65 out of every 10,000 new mothers experience a clot, Jennifer Gunter, an OB/GYN, said.

Most birth-control-linked clots are found in women's legs, but they can also sometimes travel from the legs to the lungs. Overall, your chance of developing deep-vein thrombosis is one in 1,000 every year, according to the National Blood Clot Alliance.

Hill is one such case. She began using her vaginal birth-control ring in 2011, which her gynecologist said was safer for women her age, Hill said. She said she loved it at first, but less than eight months later, she developed severe swelling and discoloration in her right leg. Hill was hospitalized for two days and diagnosed with deep-vein thrombosis.

When her physician linked the diagnosis to her birth control, advising her to immediately stop, Hill said "I was surprised." She said she didn't have a family history of clotting and had used a combination oral contraceptive in college.

After her discharge, she needed to take anticoagulants, or blood thinners, and undergo injections of heparin, a specific type of blood thinner - which, all told, cost her about $1,500.

"Since this incident, I've made a personal decision against using any forms of birth control," she said.

Women who've suffered clots from the pill don't appreciate the comparison to the risk of clots in pregnancy

Rebecca Ungarino was out to dinner with friends in December 2014 when a searing headache that came out of nowhere forced her to cut the night short.

The next morning, it was worse, and there was no explanation. "It was an extreme, extreme pain I've never felt," Ungarino, a Business Insider reporter in New York who was 20 years old at the time, said.

But when she went to the emergency room, the doctor asked if she was just hungover, she said. But scans showed she had a blood clot in her brain that could have progressed to a stroke if she had waited much longer. "That was terrifying," she said.

It was startling, too, when a neurologist told her that her birth-control pills, which she'd been on for five or six years to manage the hormonal disorder polycystic ovary syndrome (PCOS), could be the culprit.

"When I first started the pill as a teenager, it was never communicated to me that a blood clot was even a risk," said Ungarino, who stopped taking the pill immediately and took blood thinners for months after her hospital discharge.

"I'm a proponent of women using birth control if and when it's right, but I just wish I was aware of the risks," she added.

Even Firicano, who was aware of the blood-clot risks of her pill, didn't put warning signs together until she had her stroke. Clinicians didn't either. When she experienced headaches and blurry vision occasionally throughout her 20s, she went to the eye doctor, who gave her glasses and "that was that," she said.

In interviews with 24 women who'd had negative side effects, including clots from pills containing drospirenone and ethinyl estradiol, Alina Geampana, a researcher, found women didn't feel like they'd received enough information about the risks before starting the pills.

Her 2019 paper that begins with the title "one clot is too many" says the women also didn't appreciate the comparison between pregnancy-clot risk and birth-control clot risk. After all, there are risks you're willing to take to have a baby that you may not be willing to take when all you want is to maintain nonpregnant homeostasis.

"It's one of these things where if this was a man's issue, this would have been solved like a hundred years ago," Ungarino said. "That's how I feel, like no one would be getting blood clots. It's just crazy to me."

Vaccines have pushed us to consider the risks and benefits of contraceptives

All told, combination oral contraceptives are safe and almost perfectly effective when used correctly. They also come with other benefits for some, including regulating your menstrual cycle or, like Ungarino, managing conditions like PCOS.

But like any medication, they can come with risks and side effects outside clotting, like negative mood changes or decreased libido.

"It's not one-size-fits-all, and we don't have any way to predict who's going to do well and who's not," Dr. Kelly Culwell, an OB/GYN in San Diego, said. That leaves women understandably frustrated as they sort through which side effects and risks they're willing to endure, she added.

But we do know that some women are at higher risk for clots, including those who smoke, especially if they're over the age of 35, as well as those who are overweight or obese. Women with a genetic mutation like Firicano has - specifically the MTHFR mutation - are also at higher risk, but those mutations aren't routinely screened for.

For people who decide the risks outweigh the benefits, there are an increasing number of nonhormonal options, said Culwell, who helped develop a vaginal gel you can use right before sex to prevent pregnancy. Improved versions of the diaphragm, as well as condoms, tracking apps, and nonhormonal IUDs, are available too.

For people who decide to stick with the pill or another hormonal method, the key is that they decide, not just continue on with something out of habit, Culwell said.

"Talk to your healthcare provider about your concerns," she said. "A lot of times, women just sort of take whatever they're given."

Then, clinicians and clot survivors say, know the signs: pain and sometimes redness and swelling in your legs if you're experiencing DVT, and chest pain and shortness of breath if the clot has moved to your lung.

Brain clots, meanwhile, trigger excruciating headaches that don't go away with medication and sometimes are accompanied by blurred vision or tingling or numb arms.

'You can have a stroke at any age'

These are, of course, the symptoms healthcare professionals are telling people who've gotten the J&J vaccine to look out for in the few weeks after their shots.

But women like Firicano say it's important to be aware of these signs year-round if you use combination oral contraceptives. Yes, the risk is low, but it is indeed higher than clotting from a vaccine - something Firicano chose to get, in part to avoid another clot. As she said, the chances of blood clots are highest of all from COVID-19.

"I want people to know you can have a stroke at a young age," Firicano said. "And I want them to know it's a real thing and to talk to the doctor about their options."