It was a Saturday morning in Seattle when I woke up with horrific back, shoulder, and rib pain on my left side. Advil didn’t touch the pain, and I immediately blamed my discomfort on the dance cardio class I had taken that week. What on earth had I done to myself? Had one too many booty pops rendered me totally broken?
I cancelled my plans for the weekend and told myself I’d take it super easy and try to heal whatever muscles I had strained this time.
When Monday morning came, and I was no longer able to sit or lie comfortably, I knew something was wrong. I called to make a doctor’s appointment for that day. My primary doctor was unavailable, so I was given an appointment with another physician in his practice. After answering the basic questions—have you lifted anything really heavy? Have you been in a car accident? I was sent home with pain medication.
I tried going to work, and couldn’t even sit at my desk. I told my boss I needed to go home. Every single bump that the bus hit on the way to my apartment nearly killed me. I couldn’t breathe deeply due to the pain. That evening, my partner had to try and lift me into bed because the movement it required for me to go from standing to lying down was too much.
On Tuesday, I called the doctor’s office back. After describing my severe pain and what I felt had been a brief dismissal at my previous appointment, I was asked to come back in. When I arrived, the nurse took one look at me, hunched over in the chair and clenching in pain, and said she would order a chest x-ray to ensure no ribs were out of place. Within 15 minutes of leaving radiology, the nurse put me in a room and informed me that my x-rays appeared to show some sort of pneumonia.
Next, the doctor came in, who recommended that I go to the ER, to rule out something more serious, like a blood clot. Immediately, I was alarmed. Because of the pain, the nurse wheeled me down to the ER in a wheelchair and helped me check in. They took my vitals and prepared me for a contrast CT scan.
A nurse came to do an EKG. I was getting to near full-panic mode at this point, and no one could seem to tell me anything. What was going on? Why wouldn’t anyone say anything to me? Was I in serious danger? Did I have blood clots?
Finally, a seriously cute ER doctor came to chat with me. He told me that I had a Bilateral Pulmonary Embolism—explaining I had developed painful blood clots in both of my lungs and the pleurisy developing in my left lung as a result of these clots was the source of my extreme pain.
I asked what could have caused this. He told me that while they couldn’t be completely sure, the only risk factor I presented with was the fact that I had used estrogen-based birth control via my NuvaRing.
What? My NuvaRing tried to kill me? I couldn’t believe this. This was supposed to be safe – no big deal. Tons of women took birth control. I had been on it for over five years—so why is this happening now?
That evening I was admitted to the hospital. The doctors weren’t initially sure how long of a stay I would require, but I was finally given a private room. I was put on oxygen and given heparin injections in my stomach for the first day, all the while feeling like I still didn’t truly understand what all of this meant for me. I tried my best to sleep, but it was difficult that first night with my thoughts racing, the nurses constantly checking vitals, and that awful automatic blood pressure cuff practically cutting my arm off.
The next day, I really got an opportunity to discuss the next steps with a doctor. I had removed the NuvaRing—also known as the death trap from bloody hell—and would need to make a follow up appointment with my gynecologist to discuss alternative birth control. I would also be put on a newer blood thinner called Xarelto for a minimum of 3-6 months and would follow that up with both my primary care doctor and a hematologist. The hematologist would do additional blood work to determine if I had a clotting disorder or autoimmunity that may have caused the clotting, and my primary doctor would monitor me via interim blood draws and periodic appointments. She explained that the blood thinner would prevent me from developing any further clots, but that my body would actually break down the current clots on its own. She informed me that all of my vitals and blood results were stable, and that they were hoping to send me home that evening.
Later than afternoon, the nurse brought me my discharge paperwork. She emphasized the importance of watching out for severe headaches, bloody stools/vomit, and dizziness because they could also indicate serious internal bleeding. Great – just great. They are sending me home with this medication that could cause another life threatening condition.
My anxiety was through the roof. I found myself walking extra slowly, being excessively careful because I now felt like my body was made of glass. As I rode home in the Lyft I had called, all I could think about was how I was scared to be alone. I was terrified that something awful would happen, no one would find me for hours, and I’d be dead in seconds.
Over the last month, I’ve been to the ER once, the doctor four times, the pharmacy three times, and a therapist five times. My physical energy is still low, I struggle with exercising, and most of all, my anxiety threatens my wellbeing. I’ve cried what has seemed like an endless amount of tears while I have tried to process the idea of my own mortality and the way my life has been changed by this new “normal.”
Even through the fears, there have been some seriously new positives. I’ve become more knowledgeable of what has happened to me, and feel that I have finally been able to piece together the medical crisis I have been enduring since the summer of 2017. Western medicine has done some amazing things, and medications have been huge for saving millions of lives, however, looking at the big picture, the entire body, instead of just the single symptom or problem, is not one of them. Looking back, it’s like a lightbulb has gone on in my brain – realizing how each of my diagnoses is woven into another.
I have learned to see the patterns that point towards both my use of hormonal birth control and the presence of the typical American diet – composed of processed foods and high sugars. I was originally placed on hormonal birth control at age 12 after being diagnosed with Polycystic Ovarian Syndrome (PCOS) and had been told for years that this is the best course of treatment to manage my cycles and other associated uncomfortable symptoms like cramping, acne, and hirsutism. Now I ask myself—why on earth would pumping hormones into the body of a woman be better than enduring some cramps, acne, and excess hair? Especially when it can lead to something as life threatening as an embolism?
Moving forward, I’m throwing my energy into my newly discovered passion for holistic nutrition and keeping shit super simple. I’m enrolling in a nutrition program in the fall, and this is the first time I’ve felt like I am sure of my purpose and my path towards a meaningful career. This experience wasn’t 100% negative—I honestly don’t think any experience truly is—but I want to bring awareness to this side effect that is seldom discussed amongst women. I have been on estrogen-based birth control for 13 years—half of my life—and not one time did any physician ever discuss the risk of blood clots with me. Sure, it’s noted in the teeny tiny little fine print on the label – but that’s about it.
I hope that by sharing my story, I can bring this important issue to light and that together, as women, we can help one another achieve the best health possible. I mean, isn’t that part of lifting one another up?
Some Stats, Some Science
Sara von Remus
Autumne’s story is terrifying. It’s a wakeup call – that side effects do happen, and they can be life-threatening. Data collected by the FDA shows that somewhere between 3 and 9 women taking birth control pills, out of 10,000, will experience blood clotting.
While estrogen alone carries certain risks of blood clotting, it’s important to note that certain combinations of chemicals (those in combination pills) can create higher likelihood of side effects. Healthline details
Birth control, by some, may be considered “optional.” However, for those of us who prefer to use it, it’s important to know that there are safer options. I’ve listed a few below, as well as some things to be on the lookout for. Basically, no option is “ideal.”
The Mini Pill
The mini pill is a progestin-only pill. While it is one of the lowest-risk options for blood clotting, it is not necessarily the best protection from pregnancy, since it relies on you remembering to take it and being able to metabolize it properly (for some, vomiting and diarrhea can affect the effectiveness of the pill – something that doctors don’t usually discuss, and is important to understand). Typically, fertility is not affected when coming off of the mini-pill – most are able to conceive normally immediately after discontinuing their daily use.
Non-Hormonal IUD (Copper IUD)
IUDs are a great option for those who want a low-maintenance birth control solution with the ability to resume normal fertility upon its removal. The device, ParaGard, lasts up to 12 years. When implemented within five days of unprotected sex, it can be used as a form of contraception. They are more than 99% effective. The only real downside here is that the procedure can be painful, and cause cramping. It’s also important to know whether or not you are allergic to copper before using an IUD.
The “Depo” shot is a progestin-only birth control option that is injected every three months. While it is noted that it does still pose some risk for blood clotting, it is another low-maintenance option.When it’s used by the book, it’s more than 99% effective – pretty good odds. However, it’s important to note that it can cause temporary bone thinning, that stops once you no longer receive the shots. It’s important to take calcium supplements and make small diet changes to mitigate the damage. Though not reported formally as a side effect, some women have experienced minor but unpleasant side effects like muscle spasms (read: Charley horse) in the legs and other parts of the body.
Have you had a unique or scary birth control experience? We want to hear it. Email us: firstname.lastname@example.org.