Chelsea’s Story

I got the Mirena inserted after I had my son, in the middle of 2017. I had a list of weird symptoms start just a few months later but I hadn’t considered that it may be caused by the IUD at that point. The first issue that started just a few months after insertion was severe breast pain and swelling. I saw several different doctors and surgeons, including the Smilow Cancer Center at Yale New Haven Hospital and the doctors kept doing tests and couldn’t figure out what the issue was. They said it was a benign condition that I basically just had to deal with. At the end of 2018, I ended up with kidney stones (not caused by Mirena- I’ve had them several times before) and the cat scan I received for the kidney stones showed that my spleen was enlarged. I was tested for mono, which came back negative, and then I was told to just be careful of it and they would test me again, every 6 months. Well over the next couple years, I kept getting cysts on it that would burst and grow back. After testing, still no answers as to why this was happening. I was having worsened anxiety, dizzy spells and heart palpitations but after a 24 hour halter monitor that showed nothing but some extra beats, I was just basically brushed off. I was given anxiety meds that made me so loopy I couldn’t even take them. So, I just lived with the symptoms and tried to carry on with my life, as normal as possible. In 2019, I started noticing a weird feeling when I was driving my daughter to dance class. It felt like I wasn’t really driving, if that makes sense. Like I was dreaming. My brain felt extremely “foggy”. It happened every so often for the next few months or so but it wasn’t often enough to be too alarming at the time. I figured I was just exhausted from being a stay at home mother. And then 2020 hit. Obviously it’s been a crazy year for everyone, but in July, I started noticing that I got out of breath SO easily. From stairs, from walking, even just from talking. My anxiety started skyrocketing out of no where. I was driving my kids to Dunkin to get donuts one day and I got 2 minutes down the road and had to turn around and come home because my anxiety was so bad and I was feeling that brain fog feeling on top of it. A few weeks later, in August, I was driving the kids home one day and my heart started racing so bad that I got tunnel vision. I pulled into a side rode and parked and then blacked out. My heart was racing so fast and I felt like I was in the twilight zone (dissociative feeling/ brain fog) . My husband and my mom came to bring us home and I saw the doctor the next day. He told me that it must be anxiety, prescribed me Xanax and sent me home. In the following weeks, the symptoms got worse and worse by the day, and the Xanax just wasn’t helping the problem. Then, one night in September, I was having “Sunday dinner” with my family and I started to feel the dissociative feeling, and my heart started racing like crazy. I got tunnel vision and almost fainted. My family called an ambulance and I was brought to Charlotte Hungerford Hospital. They assumed “anxiety” at first and gave me some strong medicine to calm me down. The doctor immediately noticed that the medicine calmed my nerves but my heart was still racing for no reason. THIS was the first time a medical professional said “you may need to look into that IUD… I suggest you just get it out.” She told me that she had personally experienced side effects from the Mirena. They gave me fluids and had me make a cardiologist appointment to check my heart and a gynecologist appointment to get the Mirena out. I went to the gynecologist and got the Mirena out that week and also got a heart monitor put on at the cardiologist. I didn’t notice any changes right away, after removal. But after a week of having it out, my symptoms got 100x worse, I didn’t think it was possible. My heart would race so bad and palpitate and I truly felt like I was dying every single day. That dissociative feeling I had when I was driving was happening ALL day at that point, every day. I had several neurological issues like numbness in my limbs and a constant shaky feeling in my body. I felt pressure in my temples/migraines and vertigo and I constantly felt off balanced like I was going to fall. My vision changed to the point that the sun would bother my eyes, same thing when trying to look at a bright screen. Because of all of these symptoms together, I had to completely stop driving. I felt like I was just floating through life. I could hardly eat and I was stuck on the couch most days, which was extremely hard because I’m a stay at home mother to a 3 and 5 year old. I would just cry and scream to my husband that he needed to admit me to a mental hospital if it continued much longer. It got to the point where I even expressed that I didn’t want to live any longer if the symptoms did not stop. I could NOT be the mother that my children deserved at that time so my parents or sister would leave work just to watch the kids while I laid there crying in bed struggling with the feeling of having a heart attack or dying, having “my episodes” is what I called them. I wore the heart monitor for a month, while the symptoms worsened by the day. They didn’t find anything crazy in the results, just some extra heartbeats. I also saw a hypertension specialist because my blood pressure was around 150/95 at one point when I was just hanging out on the couch. My heart rate would go through the roof when I was trying to sleep and I ended up being awake all night, almost every night. They still couldn’t figure out why it was happening. The 24 hour blood pressure cuff showed slightly elevated blood pressure for the day I wore it, so they weren’t super concerned with that but it was something to keep an eye on. During this nightmare, I ended up finding a bunch of Facebook groups about the Mirena side effects and I was blown away at the amount of women around the world who were going through the same thing as me. I found out that the reason the symptoms got worse after getting it removed was because of the synthetic hormone, Progesterone, leaving my body abruptly and then my body was having a hard time starting to produce the Progesterone again on its own. They called it the “Mirena crash”. So after all of the “I don’t knows” I got from the doctors, and after confirming that thousands of women were going through the same thing, I decided to just ride it out and see if it went away. So, I had gotten it out on September 18 and after about a 2 month long “crash”, I’ve very gradually gotten about 75-80% better. I still struggle every single day to an extent and even worse around my periods. It makes me cry to talk about this time period of my life because of how intense the symptoms were and how low it all made me feel physically and mentally but I’m reminded of it everyday as I struggle to try and get my life back, one day at a time.

List of symptoms:

Breast pain/swelling
Anxiety
Panic attacks
Mood swings
Brain fog
Dissociation/depersonalization
Vision problems
Head pressure
Headaches/migraines
Vertigo
Heartburn
Nausea
Diarrhea
Heart palpitations
Racing heart
High blood pressure
Weight gain
Shortness of breath
Dizziness/light headedness
Enlarged spleen
Loss of appetite
Fatigue
Insomnia
Pelvic pain

 

Submitted on January 5, 2021

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