health

'I got an IUD inserted in 2016. No one warned me it could blow up my life.'

Warning: This post deals with mental health issues and suicidal thoughts. It may be triggering for some readers. 

This is one woman’s experience and should not be substituted for medical advice. 

Birth control and I have had a strange relationship from the start: I exist because of a contraceptive failure.

Despite whatever pill was most often prescribed in suburban Pennsylvania in the early 90s, here I am. Without ever been told this, I could feel the weight of it as a child. My sense was confirmed when I was in my early twenties.

So it may not shock you to hear that I just couldn’t bring myself to trust the pill. I am, after all, living proof that sometimes it doesn’t work. And if it hadn’t stopped me once before… well, who was to say the pill and I could cooperate again?

Instead, I chose what I thought was the very opposite of the pill: something not convenient, not painless, not consumable, not easily forgotten or misplaced. Instead, I wanted a physical barrier of plastic and levonorgestrel (a hormone disruptor) inserted directly into my uterus. It was made to last for three years. It hurt like hell to have it inserted and it had two wires (‘strings,’ they call them) that hung out of my cervix.

My first IUD was placed in 2016. It was the tiniest member of the IUD family, little Skyla. Nothing prepared me for the experience of having it inserted. I’ve broken my leg twice; I prefer that experience to the insertion of an IUD.

Do you want to know more about the IUD and how it works? Watch this Mamamia video, where Mia Freedman gets one inserted. Post continues below.

Video by MMC

As astutely pointed out by Jamie Peck on Medium, despite the fact that an IUD insertion causes immense pain, women are not offered the option of any kind of sedative. Still, I would trust nothing but the IUD, and so I had no option but intense pain and discomfort. Insertion experiences do vary; for me, it was borderline traumatising.

When I got my first IUD, I was already in the darkest period of my life. I was struggling with 20 plus years of untreated depression and anxiety, an eating disorder, and a fraught season of wedding planning.

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That first little Skyla ran its course without any noticeable hiccups. Three years later, I was due for another. During that time, my mental health had improved drastically, and I was on a solid path of recovering from my eating disorder.

Interestingly, after I went through everything with the insertion, it turned out that I still couldn’t trust the IUD either. We also used condoms, because the idea of an ectopic pregnancy — which occasionally does happen with IUDs — scared my husband and I. (Women in my family appear to be frighteningly fertile.) I was also constantly afraid of it becoming dislodged, or permanently damaging my uterus.

Despite my unwavering mistrust of the IUD’s potential for wreaking havoc, I decided to get another when the first ran out. The OBGYN’s office tried to schedule my IUD swap — when they take out one and install another — for April 1, 2019. I just couldn’t bring myself to go through with this procedure on April Fool’s Day, so instead, I went in two weeks later.

The second insertion was much like the first: fairly swift, but so painful I could see stars and my legs were like jelly after. Then I went home, I binge-watched The Marvelous Mrs. Maisel for the first time (which is perhaps the only good thing to come out of this experience), took a nap, and resumed normal life the following day.

No cramps, no pain. But I did feel ever-so-slightly off. I didn’t have the same stamina during exercise I had been enjoying, and my mind was just the smallest bit foggy. It was all so subtle that I didn’t think much of it.

As my next period arrived, I felt increasingly odd. My energy levels plummeted and my anxiety began to build seemingly for no reason. I’d just gotten my first tattoo and my muddled brain fixated on that decision, whether it was the right choice or the wrong choice. I obsessed over it. My levels of mental confusion and unease began rising; I was like a lobster in a pot of water that was slowly increasing in temperature. I hardly knew what was happening.

Everything exploded. All at once I was on the bathroom floor sobbing and hyperventilating out of deep, unidentifiable fear. I have never been as scared as I was then. Everything was horrible, hopeless, irredeemable.

Nothing had happened; it was a normal weekday afternoon. I was off work, my husband was working from home. But nothing could console me. Not my husband, not friends, not my cats, not a single thought or dream I had previously relied upon to buoy me in times of sadness.

I tried to blame it on my new tattoo, telling myself it had been a horrible decision (despite the fact that I’d thought it over for years), but that didn’t feel like the right explanation. Even in my confusion, I knew that didn’t warrant a complete break down of my security and hope. I cried from three o’clock in the afternoon until I went to bed at 11. I was completely unable to eat and hardly able to function.

The next morning, I had left the house before the sun was up to open the college library where I work. My eyelids were still swollen from crying. I moved through my workday like a zombie, trying to not cry at my desk and communicate intelligibly. Nothing felt real. Everything felt pointless.

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It was like there was a heavy, black, tangled veil all around me and I couldn’t escape from it. It caused me to be utterly alone, even when I was with people. There was not a single second of reprieve from how hopeless and damned I felt. I was dizzy and breathing evenly was hard.

I frantically texted my husband for help, for insight. There was, of course, only so much he could do. He couldn’t come up with any explanation, except maybe a very sudden return of my depression. All I could do was breathe and count down the minutes until I could leave work.

As I drove home, I started to think about death because I felt like I nearly was dead anyway, and death seemed preferable to the darkness that had overtaken my brain.

When I got home, I realised I couldn’t be alone. I’m not stoic, but I’m also not comfortable being vulnerable in front of others. My mother-in-law was the only person around, so I begged her to come to my house. I cried in front of her for the first time. Even when she was there, consoling me, I still felt isolated.

I continued to cry and shake. She stayed at my house while I napped, so I wouldn’t wake up to an empty house. When I woke, everything was still dark and out of control. I hadn’t eaten in 24 hours, and I wouldn’t eat again for another 40.

The cause of all this was still unknown, which made it all the more frightening.

It was my mother-in-law — the tiniest, kindest, June Cleaverest lady you will ever meet — who first wondered aloud if it might be the IUD causing all of this.

When my husband came home, we went to a local urgent care because I had started to experience chest pain and discomfort in my left arm. The nurse saw me immediately. I hardly had the acronym IUD out of my mouth before she said, “Let me stop you there. That’s the problem.” It could be placed incorrectly, she suggested.

It could just be that I was sensitive to the hormones. She never examined me; she told us to go directly to the ER.

But we didn’t.

No, you see, we live in America, where going to have your medical needs addressed could be a risky financial decision. Instead, we decided to wait. My head was throbbing and I was having trouble breathing, but we knew it would be cheaper to go to the OBGYN the following day. So I waded through a black fog into the next morning. I couldn’t watch television because my eyes hurt and my mind was easily frightened by even the mildest suspense.

My husband started to do what he always does when I have a health issue: he did research. He found story after story that sounded like mine, and lawsuits against IUD manufactures for symptoms just like mine. The stories of mental health complications after an IUD insertion echoed mine exactly.

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He looked into the way levonorgestrel works chemically. In the literature, they talk about the hormones in an IUD being ‘localised’ but, we realised, nothing in your body is localised. It’s an ecosystem. My husband looked into how the levonorgestrel in IUDs changes how your own body produces hormones. He looked at the connection between estrogen and IUDs, hypothesising that women in my family are estrogen dominant (hence our penchant for thyroid disease). He tried to find an explanation.

As he researched, I was in a state of dark limbo. Everything felt distant; my husband, friends, God, my own self.

Waking during this time was painful. As I came out of sleep I would have a few minutes of peaceful cognisance. Then the blackness would hit me all over again.

mirena-iud
"I was in a state of dark limbo." Image: Getty.

By the time my husband and I were sitting in the OBGYN’s waiting room the next day, I hadn’t eaten in 45 hours. Everything was still nauseating and swallowing was impossible. I sat slumped in the chair, clinging to my husband’s hand. Two children ran in circles and a newly pregnant couple smiled at each other now and again. I could not fathom the joy and ease of either of these pairs.

The nurse called my name. She weighed me. I’d lost an unhealthy amount of weight since my last appointment, two weeks before.

When the doctor came in, I fumbled through the explanation I had prepared to give her. Up to that point, I’d had a good relationship with the OBGYN. She was a calm, 60-something-year-old lady with a pixie and a slight ex-hippie vibe. But when I finished telling her everything that had happened, her demeanour clouded.

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She didn’t seem to believe me, or at the very least she didn’t believe it could be the IUD causing my symptoms. After all, she said, the last IUD hadn’t driven me to tears.

But I’d realised that it had.

I keep a five-year diary. I’ve been keeping it since the year I got my first IUD. When I got that first Skyla, I was already deeply depressed. But reviewing my diary, I realised things started to go further downhill after I got the IUD.

There were suddenly more entries where I reported being ill at ease, and all of sudden I didn’t feel as physically attracted to my husband-to-be. Three days into my first period with the first IUD, I had had a major depressive/anxious/panic fuelled episode that had nearly resulted in me driving off the road and/or calling off our wedding and our relationship for no reason whatsoever. And it was three days into my first period with the second IUD that everything had begun to deteriorate.

I told the OBGYN this. Her scepticism remained. As I cried in front of her, she proposed no solution to my dreadful state of affairs.

My mind, though confused, was made up on one account: the IUD needed to come out. My husband agreed. With visible displeasure, she silently prepared the implements to remove it. The first removal had been bearable. I believe I cringed and gasped lightly. At the moment of the second removal, I squeezed my husband’s hand and shrieked in pain.

When I was able to open my eyes again, I looked at the OBGYN. Disappointment was written across her face. She firmly, quietly, but very immediately asked me what I would be doing about birth control. I was awash with pain. I croaked that I would figure that out later. She left the room, and I didn’t see her again.

It took me about a week to start, slowly, to come out of the darkness. I slept through the night, late into the morning, and then took several naps through the day. Slowly, my appetite and ability to swallow returned. My husband took the advice of a friend and made me smoothies full of berries and maca to help my hormones stabilise.

When I was able to watch television again, I could only watch shows that I’d seen before, so I knew what to expect. Conflict and uncertainty shook me too much. Fear and sadness continued to swallow me up. The idea of other countries and other languages scared me; something that vast was overwhelming. The hole in the toe of my friend’s beloved Tom’s unsettled me. I continued to not feel like things were real. Nighttime brought on a suffocating sense of being shut in a box, alone, with no means of escape.

My husband continued to research. He learned about the "Mirena crash". It would take time — perhaps multiple cycles — for my body to get back in the groove of producing the correct levels of progesterone. He didn’t just look at anecdotes, but also academic papers about hormones and hormone disruptors.

I was still in a fog, and sometimes my moods were unpredictable. A month came and went in a blur. Improvement has been slow but sure. It’s now been nearly two months since I had the IUD inserted, and six weeks since it was taken out.

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No one warned me that this might happen.

The OBGYN gave me a paper of things to expect. Depressive moods, anxiety and panic were not listed. Verbally, before I left, she told me to call the office if I experienced a fever, pelvic pain, excessive cramps or expulsion of the IUD. Again, a change in mental health status was not mentioned. The official Skyla brochure didn’t say anything about it either.

After the removal, there was no follow up from my doctor. Eventually, I emailed her my own follow up to let her know how I was doing and how concerned I was that no one had let me know this could happen. She called me about a week later.

She could never definitively tell me why this had happened and she still didn’t propose a solution. She never said anything about the fact that the IUD could have been misplaced. When I told her she needed to warn women about this, she told me that these side effects are so rare there’s no point in warning women.

Ignore the statistics, I told her. The impact of these symptoms goes beyond pelvic pain and could be as consequential as an infection. I made it clear that if I had taken her advice and left the IUD in place there was not a doubt in my mind that I probably would have attempted suicide.

“You are doing a major disservice to women,” I said. “You are really letting them down.” I suspect that if I’d kept the IUD, I would have prescribed an antidepressant. There’s a time for antidepressants; I’ve taken one in the past. But why take medicine to treat the side effects of another medicine? Why not treat the root cause of a problem?

I’m still reeling from how the darkness caused by the IUD made me question my life, my marriage, and my relationship with God. While recovering and in a hopeless place, I nearly quit my job. Out of my mind with confusion and anxiety, I got into an ugly argument with my ever-patient husband for no reason. For a time, I continued to think about slitting my wrists.

But I’m hopeful. For the first time in three years — perhaps longer, considering my years of depression — I’m en route to my mind being as clear as female hormones can allow. I’m becoming more aware of my body, through temping and charting.

The explosion is over. The dust is settling.

If you think you may be experiencing depression or another mental health problem, please contact your general practitioner. If you're based in Australia, please contact Lifeline 13 11 14 for support or beyondblue 1300 22 4636.

This article was originally published on Medium and was republished here with full permission. For more from Ema Hegberg, find her here. 

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