When I was 22, I decided that I wanted to switch forms of birth control. I had been on one of the pill variants since I was eighteen or so, to help with my dysmenorrhea (unusually painful periods with no discernible cause), and it had been smooth sailing ever since. The downfall? While my particular pill was 97% effective with perfect use, taking it perfectly included taking it at or closely around the same time every day — and I am a notoriously bad pill taker. Hell, I even struggle to take my blood pressure medication on a consistent basis, and that keeps me from dangerously passing out every time that I change position too quickly or get a little too warm. This was a non-issue for the first few years that I was on the pill, given that I was using it strictly for the medical benefits. I had even stopped taking it for a couple months after a lapse in getting a refill, with only loose plans to start taking it again that I only ever remembered during my period. For awhile it wasn’t even a consideration, until I began dating my first serious boyfriend.

One thing to know about me for all intents and purposes of this article is that I am incredibly tokophobic (which, for those not well-versed in obscure phobias, is a fear of pregnancy). I adore kids, but even if I were to be in a place currently where I was “ready” to have my own, the thought alone is enough to send me into a panic. So while I knew that I needed to get back on birth control before we started having sex, I couldn’t fathom trusting that 3% chance of failure with perfect use, let alone trusting myself to take it perfectly. I began doing heavy research on different forms of birth control when I came across the Mirena IUD, which seemed like the miracle solution to me with an effectiveness rate of over 99.9% and no chance of user error. All you had to do was check the placement of the strings every month, and you were covered with more protection than literally being surgically sterilized. Mirena can also lighten or even stop periods completely in some users, which was the icing on top of the cake in my decision making process. Determined and armed with justifications, I headed to my gynecologist’s office to tell her I wanted to get the Mirena inserted. Before I even need to bring out my first of many reasons, she agreed and handed me a pamphlet, with directions to call the office as soon as my next period started to schedule the insertion. As it just so happened, the appointment fell on my 23rd birthday and I couldn’t have been more ecstatic. All accounts that I had read online had me prepared me for the potentially most painful experience of my life, but despite being pretty uncomfortable for a few seconds, the insertion itself had gone smoothly and I was looking forward to the peace of mind on the birth control front for the next five years. After the recovery week of Tylenol and mild cramping, everything seemed to be great.

Less than a month later, the anxiety began. Other than the aforementioned tokophobia (which I was usually capable of talking myself down from), I’ve never been a person that struggled with anxiety. But all of a sudden, I was living in an almost constant state of anxiety — even small, everyday worries felt insurmountable and crushing. I had to constantly be moving or doing something, or I would start to slip into panic attacks. I could hardly eat, and would struggle to keep it down when I did eat. I was emotionally volatile and would get irrationally angry, immediately followed by uncontrollable tears. Initially, I wrote this all off as the stress of my final semester of college getting to me, but it didn’t take me long to start to suspect something more sinister was at play. After making my mom drive the half hour to come pick me up and bring me back to my hometown at one in the morning in the midst of the most intense panic attack I’ve ever had, I made another appointment with my gynecologist ASAP. I worked up the courage to tell her what had been going on, only to be told that anxiety wasn’t a known side effect of Mirena since the hormones are supposed to be localized to your uterus. “Are there other things that could be making you anxious?” she asked, giving me a concerned look. “Do you need a referral to see a therapist?” Frustrated, I left the appointment with less answers and more questions than I had came with.

I still knew that something wasn’t quite right, but I was afraid of pushing for answers and being labelled a hypochondriac — as someone who has dealt with chronic illnesses for the majority of my life as a young adult, I couldn’t afford for doctors to not take me seriously. I managed to get my anxiety to a point where I was able to function for the time being, but by ignoring it, I began to actually become a hypochondriac. In my mind, my particularly bad sinus infection was a rare fungal infection that was going to either kill or severely disfigure me. I could no longer take my blood pressure medicine, because it was a steroid that could weaken my immune system and make me more susceptible to getting sick. If my left arm was even slightly sore, it was a heart attack. Every time I touched an animal, even my own fully-vaccinated indoor cats, I had to aggressively wash my hands for fear that I would contract rabies. I knew that this was all completely irrational, but I was afraid to talk to anyone about it because I was entirely aware that it would sound like I was losing my mind. My doctor gave me a one-time prescription of anti-anxiety meds, but taking those lead to a whole other set of scary side effects, so I stopped taking those too. It felt like my mind was a prison with the walls slowing closing in on me, and I was suffocating.

At its worst, I felt like I wasn’t even a person anymore and like I was watching my own life as a movie. Or my mind would manage to convince me that I had died but didn’t remember it and that “reality” was some sort of afterlife. I stopped eating again, began having intense panic attacks if I was out of my house for more than a few hours at a time, and convinced every small twinge of my body meant that I was dying. My memory began to become unreliable, to the point where I could walk from Point A to Point B but not be able to remember how I got there, and I was downright terrified that I would blackout and hurt myself (despite not having any conscious urges to do so). Even typing this now feels vulnerable and scary and ridiculous to admit. And this was just the mental/emotional effects — I also began to have stabbing pain in my cervix, ovarian cysts, random muscle twitching and weakness, and even blurring vision in one eye among other things. And in the spirit of true irony, I was more anxious than ever about my IUD failing and not protecting me from pregnancy after all. By this point, I knew that something had to be wrong and I began to do more research, only to find out that my experience was in no way uncommon. I remember coming across a blog post that described feelings almost exactly like my own, even the scariest parts, and just crying because I finally knew that I was right all along and that I wasn’t going to have to live like this forever.

I’m no stranger to side effects in the slightest— as previously mentioned, I manage several chronic conditions on a daily basis and have been on quite a few different medicines as a result. I did my research before having the Mirena inserted, and was aware that there could be negative side effects, but also knowing that everyone’s experience is different and you can’t put off something beneficial because of the fear of potential side effects. The effects that I was aware of, however, are what the official website lists as being limited to pain, bleeding, dizziness, missed periods, change in menstrual bleeding, cysts, expulsion, and a very small chance of ectopic pregnancy. There’s nothing about any of the mental and emotional effects that I suffered through, though it does say to ask your healthcare provider about additional effects (something that proved to be pointless, in my case). I believed that I was going into this experience well-informed, having done my research and trusting my doctor. That being said, this is not an attempt to dissuade people away from this particular birth control or to scare anyone. If every person who used the Mirena had an experience like mine, it wouldn’t be approved for use — for every individual with a story like this, there are hundreds who had nothing but a positive experience and will rave to anyone who will listen about it.

This is simply to enforce the idea that we need to be proactive in getting accurate information about what side effects that someone using any form of birth control could be facing, without having to suffer through it first. Patients should not have to actively look for others’ negative experiences to finally realize that they aren’t losing their minds, and doctors need to (at the very least) be open to the possibility that the birth control could be the cause of these issues, even if it’s not a “known” side effect. In the meantime, do extensive research before starting a new type of birth control. Don’t stick to your preferred method’s official pamphlet; seek out real life experiences and what type of side effects people actually tend to experience and make a truly informed decision. Listen to your body, and trust when something isn’t quite right. And above all, know that you are not alone.