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Birth Control and Blood Clots: My Story

Updated: Nov 15, 2022

My first birth control method was Kyleena, a low-hormone intrauterine device (IUD). I didn’t know much about the world of birth control, but I knew of so many women who were using it and were totally fine and not getting pregnant. I was 24, working full time, in a steady, long-term relationship, and REALLY not trying to have a baby - so it seemed to be the perfect contraceptive solution for me in 2019. My partner and I were looking for an effective, long term option, and Kyleena fit the bill. So when my doctor suggested it, I booked the insertion appointment. The IUD allowed me to set it and forget it for a whole year! Kyleena can last up to 5 years barring any issues, but that didn’t end up being the case for me.

At my one-year check-up, my gynecologist performed a transvaginal ultrasound where she discovered a fibroid in my uterus, about 4 centimeters in diameter. My fibroid is submucosal, meaning it’s located in the lining at the top of my uterus. It was pushing my IUD down towards my cervix. That increased my risk of pregnancy, uterine perforation and expulsion, so we had to remove it in early 2021. I was so bummed, but I really didn’t have a choice.

My gynecologist and I started looking into other options. I’m forgetful with pills, so the next suggestion was NuvaRing. On the official website, NuvaRing is described as, “a small, flexible vaginal ring used to prevent pregnancy. You put it in for 3 weeks, take it out, then put a new one in a week later. It's just as effective as the pill when used as directed, and you don't have to think about taking it every day.” I thought, “Great. The next best thing.” After discussing it with my partner, we decided to give it a try. And you know what? It was great for six weeks! We had all the sex we wanted and didn’t get pregnant! Mission accomplished.

It seemed too good to be true, and for me, it absolutely was. Six weeks in with my NuvaRing, my calf started swelling along with constant pain. A couple days went by and I couldn’t walk anymore. I researched my symptoms and suspected a blood clot. At the emergency department, I was diagnosed with a Baker’s Cyst because my leg wasn’t red (I’m black... It takes a lot for me to turn red). I was told, “It’s just gonna hurt very badly until it doesn’t anymore. Just give it time.”

Two more weeks went by before my leg started to feel a little better, but new symptoms appeared. I could barely breathe. I had a horrible cough and stabbing pain in my chest all the time, especially when I inhaled. I headed back to the internet to do some more research (sometimes it pays to be a hypochondriac). I narrowed my symptoms down to 3 things: COVID-19, a collapsed lung, or pulmonary embolism. After testing negative for COVID and speaking with a friend who had recently suffered a collapsed lung, I ruled those options out. All that was left was pulmonary embolism (PE). A blood clot in my lung. All my reading suggested that PE can kill you, and quickly - back to the emergency department I went.

Large clots were found in both of my lungs. It was decided that the NuvaRing had caused it. According to the doctors, it was a very close call. My symptoms were severe, and had I waited another day, I could have died. When I shared about my previous visit addressing my leg, and my concerns about misdiagnosis, the doctor agreed that my, “Baker’s Cyst,” was likely a clot in my leg which broke off and travelled to my lungs. We managed the clots with blood thinners and weekly blood work. Admittedly, I felt smug about having been right, but mostly angry. What if I hadn’t done the work and figured it out for myself? What about other birth control users who are waiting for an extra day? It made no sense to me how cavalier all the medical professionals were being about this whole thing. After all, in their words, I could have died. I remember each doctor I spoke to being very relaxed about it all, which, to be fair, is probably part of their job. It was just such an odd juxtaposition to everything I read about how dangerous PE is, and how sick I was.

This happened for a few reasons

A hematologist informed me (after the fact) that I am sensitive to estrogen, which made hormonal birth control dangerous for me. Unfortunately, that’s hard to know before something goes wrong. I have several other risk factors for blood clots that increased my vulnerability (higher BMI, not being as active since COVID, being black and adding hormones with birth control). I have a lot of questions about how or even if my case could have been prevented. Did I already have a fibroid before I got an IUD? Are there tests that could have indicated my sensitivity to estrogen ahead of time?

There’s no way to know, really, but if I had to do it all again, here are some things I would change.

  1. Read the pamphlets (REALLY read ‘em). While I trust my healthcare providers, I wish there had been more conversation upfront about how risky birth control can be. I wish I had put as much effort into researching the risks of birth control and how they applied specifically to me as I did into researching my symptoms when I got sick.

  2. Ask all the questions. I’m learning from this experience to be more assertive and advocate for myself, and I think we can all benefit from this practice. We deserve to be as educated as possible about the decisions we’re making for our bodies, and we deserve to feel safe while making them!

  3. Know my risk factors. Personally, if I had known more about blood clots and my preexisting risk factors, I might have made a different decision about hormonal birth control. It’s up to us to know our risk factors and decide where we want to set our boundaries.

  4. Request the tests. A couple tests that can be helpful in figuring out the right contraceptive method for you include blood pressure tests, pap smears, and pelvic exams. If your healthcare provider doesn’t order, you can ask if you want them! For example, if I could do it again, I would request an ultrasound before getting my IUD. If my fibroid was already there, we would have known to skip the IUD entirely! For me, it certainly would have been worth taking a look.

  5. Talk with my partner. The burden of preventing pregnancy shouldn’t fall entirely on women. If you are a person with a womb having sex with a person with a penis, discuss ALL the options. My partner and I never even considered a vasectomy as an option until I ran out of options for myself. A vasectomy doesn’t have to be a last resort, and you don’t have to wait until you’re sure you don’t want kids or you’re done having kids to get one. They’re reversible!

In conclusion, I just want to mention that everybody is so different, and the several things that didn’t work for me could very well be fine for you! Almost no two people carry the same risk of adverse effects from birth control. According to Andra James, MD, Duke University, “Only 1 in 3000 women who are taking birth control pills will develop a blood clot". With that being said, CDC studies reveal that of the 900,000 people affected by blood clots in the United States, anywhere from 60,000-100,000 people will die. Up to 30% of people die within a month of diagnosis, with sudden death being the first symptom in around 25% of PE cases. I don’t share these statistics to scare anyone, only to shed light on how heavy some of the risks of birth control can be. I read these statistics thinking, “Do we talk about this enough?” The amount of women affected may be small, but that small amount of women are in more danger than we tend to realize.

What I think we can all agree on is that care for birth control users is not where it should be. I’m not advocating for distrust in our healthcare providers, but if we do our part in continuing these conversations, educating ourselves and pushing for more comprehensive care, we’ll see less stories like mine.

Edited by: Lisa Hou, Dallas Barnes

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