It was 2016, and I had been suffering from excruciating periods for months when I was diagnosed with endometriosis, a disorder in which tissue that normally lines the uterus grows outside the uterus instead. The pain often made me throw up, left me unable to move, and over time became debilitating. In an attempt to ease the pain I depended on warm showers and Percocet, but that clearly wasn’t sustainable.
On recommendation, I visited an OB/GYN surgeon and got a formal diagnosis. We removed a couple of cysts via laparoscopy and placed an IUD called Mirena to alleviate some of the endometriosis symptoms. My surgeon didn’t speak with me about potential side effects and even recommended not to Google them. Little did I know, this little piece of plastic I saw as my savior would slowly make me its prisoner.
First signs
Right after the insertion, I started to develop mysterious joint pain all over my body. It felt like arthritis and every little movement hurt, like I was made of glass. I had to rub muscle relief cream all over my body to be able to function during the day and covered my bed with heating pads just to sleep at night.
I underwent a barrage of medical tests. None of which were conclusive. I alerted my OB/GYN surgeon; he told me he wasn’t aware of any side effects that would contribute to my symptoms, but suggested taking out the IUD “just in case”. I was conflicted, but I decided to keep it as I wasn’t ready to go back to square one regarding my endometriosis. I wanted this IUD to work so badly and felt like I had to give it a fair chance before abandoning it.
After a month or two, the joint pain went away, and I ended up feeling pretty okay in 2017. I was suffering from inexplicable nausea and dizziness regularly, but nothing that alarmed me at the time. I was enjoying a normal-ish, somewhat pain-free life. Then came 2018.
The beginning of my nightmare
It’s now 2018. I’m planning my wedding, and at the same time, I’m feeling an overwhelming sense of anxiousness. I’m uneasy, but I’m writing it off to the natural stress of planning something so important. That went on for a few months, and in April, things suddenly went south. One night, my body felt very heavy and unresponsive. My heart started pounding, and my head was spinning; it escalated to the point where I passed out in my bathroom. I called my fiancé to tell him I felt like I was dying and needed help, and he rushed home.
We were inches away from going to the ER but decided to call a doctor friend first. He asked me to explain my symptoms, and right away reassured me: “You’re not dying, you’re having a panic attack.” He recommended I take a Xanax and try to get some sleep. But when I woke up, I wasn’t the same girl anymore.
Overnight, my body’s chemistry had changed. I was constantly panicked, anticipating another attack every minute of every day. My brain didn’t feel like mine anymore. I was foggy and confused, like “high” on something, similar to a bad trip. I couldn’t focus. I couldn’t relax. Desperate to find an explanation, I convinced myself that the filler I had injected in my frown line the afternoon of my first panic attack was responsible for my state. Two psychiatrist friends assured me it couldn’t be the case; but after several weeks of hell, I knew something had to be wrong. Meditation, yoga, acupuncture, naturopathy, hypnosis, change of diet, cognitive behavioral therapy… nothing was helping. It was like I was being poisoned. I was getting married in July and lost my grandparents a few months prior, so the logical explanation doctors gave me was that I was stressed out and everything would go back to normal after the big day. My physical symptoms were so intense, I had a hard time believing it, but I still held onto hope.
My wedding was the most beautiful day of my life, and I’m so grateful for it. But at the same time, and I hate to say it, I was still struggling. By then, I had been suffering for three months straight, had developed a full-on panic disorder, and was terrified to have an attack in front of all my friends and family. The attacks came so randomly that we had to arrange seating for my husband and me during the ceremony, so that nobody could tell if one occurred. I had an incredible time and felt so much love from everyone, but I had to take small doses of Xanax every 2 hours to be able to go through the day. I was ecstatic about marrying Mike and having the dream wedding we worked so hard for, yet I was a bit sad I couldn’t fully enjoy it.
From bad to worse
It’s now summer, the big day is over, and somehow I’m getting worse. The uncontrollable anxiety is damaging my neurons responsible for how the brain associates with feelings of familiarity. Imagine knowing your husband is your husband, knowing your mom is your mom, and yet… those people feel unexplainably unfamiliar to you. Even looking in the mirror, I didn’t recognize myself. That feeling was both frightening and confusing in a way that’s difficult to verbalize fully. I was in a constant state of disassociation, both with my surroundings and with myself – half waking dream state, half Alzheimer’s. That neurological condition called derealization-depersonalization disorder was the scariest of all my symptoms, and by the end of summer I had it 24/7.
One day, I randomly stumbled upon an article stating that more and more women under hormonal birth control were complaining about mental health side effects. I googled ‘Mirena’ and ‘Anxiety’, ‘Mirena’ and ‘Depersonalization’ and found dozens of articles about women suffering from the exact same symptoms as me, as well as the other ones I had experienced: joint pain, nausea and dizziness. I wasn’t alone. I immediately scheduled an appointment with my OB/GYN surgeon to remove my IUD. I could tell he didn’t believe Mirena was the cause of my problems, but I listened to my gut and went ahead with the procedure.
It turns out, hormones (which regulate your mood and your nervous system) don’t always do their job when they’re synthetic, leaving some women either very depressed or, like me, in a constant state of alert. Studies have also shown that too much synthetic progesterone can create intracranial hypertension, a pressure of the cerebrospinal fluid in the skull that can have an impact on depression and anxiety.
After the Mirena was removed, I wish I could say everything went back to normal, but things actually got worse before they got better. While on Mirena, your body relies on the device that produces progesterone and becomes lazy at creating its own. So when you remove it, you experience a hormonal crash, and your body forgets how to function correctly: this is called the ‘Mirena crash.’ Because of this, the good chemicals you need to regulate your body can’t make their way into your brain, causing an amplification of your symptoms.
I removed my IUD in August and crashed shortly after. To this day, it’s hard to talk about it. I’m so thankful my husband was by my side through this dark time. I don’t think I could have done it without him. My anxiety symptoms (jitters, trembling, feeling of being ‘high’ all the time) intensified. I couldn’t move my body and was stuck on my couch or in my bed. At only 32 years old, it was like my body and my brain were shutting down, and I had no control over it.
My world, usually so big and so rich, shrunk to the size of my apartment. I couldn’t leave my home anymore and had to request to work remotely. My depersonalization-derealization symptoms escalated to the point where I was confused all the time, not entirely sure I was present in the room. Everyone I knew looked like a stranger, which terrified me. I eventually stopped seeing people altogether because it became too hard to look at them. I felt like an empty shell roaming around the world, a world that had become so small and that didn’t feel real, or mine. It was the lowest point of this whole journey and of my entire life; lower than that, it felt like death.
Usually a perfectionist, I was so embarrassed to think my friends and family knew I was in that state. People started to worry because it was so out of character, and my parents and two best friends flew to see me. It was hard to explain what I was going through, and I was scared they all thought I had gone mad. I felt like a prisoner in my own mind.
Seeking medical help
Realizing I needed professional help, my husband and I found an endocrinologist and a psychiatrist specialized in anxiety and depersonalization disorders. The endocrinologist confirmed what very few doctors know or admit: some women have severe adverse reactions to Mirena. She gave me tips to slowly balance out my hormones and detox my body. “Synthetic progesterone can stay in human tissues for months, or even years,” she explained. The psychiatrist helped me go over the hump and prescribed an SSRI, to facilitate the reception of serotonin in my brain. She also helped me identify negative thought patterns I needed to let go of to be strong in my recovery and offered a lot of support throughout my journey.
By the beginning of November, three months after the IUD removal, I started to go outside again for short walks or runs. By December I started to have moments where I wasn’t disassociated anymore. It was the first time since summer, and felt like the first real step in progress. By January I was able to fly to California for a trip with one of my closest friends. Said like that, it sounds like a fast recovery – but it wasn’t. Every day was a struggle. Every day I was hanging to the hope of feeling normal again. I had setbacks, especially during my period when my symptoms came back. I felt like I would never see the end of it and got discouraged more times than I can remember. Again, my husband, family and close friends provided unconditional support and kept me going.
Recovering, slowly but surely
Little by little I reconnected with my old self, or my new self actually, as after this traumatic experience I doubt I’ll ever be the same again. But I want to believe that along the way, I learned many lessons on what’s important in life. That I’ll eventually become stronger and healthier because of it, and not in spite of it. It’s now March 2019, and I’m about 70% back to myself. Almost a year after my life took a turn, I’m finally starting to glimpse what ‘normal’ feels like again. I’m still fragile and on medication, but I’m grateful for the progress I’ve made. More than anything, I’m eager – oh so eager – to put this whole nightmare behind me and move on with my life.
With everything that happened, my goal is now to spread awareness on the potential side effects of Mirena. If you’re experiencing the same symptoms as me, you are not crazy, it is not your fault, and yes it will go away – it just takes time for your body to heal. Personally, connecting with other women through Facebook support groups helped immensely. If you want, you can also join one of the many class action lawsuits against Bayer, Mirena’s manufacturer. Bayer already had to withdraw another dangerous contraceptive device from the market last year and clearly sees us, women, as nothing more than disposable bodies – possibly the worst company there is with Monsanto (match in heaven, they merged last year). If you’re curious to know how Mirena got approved by the FDA in the first place, watch The Bleeding Edge on Netflix, a documentary that explains well how these medical devices companies end up putting untested new products on the market. Ladies, just make sure to do your research – I sure wish I did mine.
You can get in touch with Lucie through her website, Brooklyn Wedding Photographer.