What Do You Mean ‘You Can’t Find It’? One Woman’s Nightmare with the IUD

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Photo: Courtesy of Ahmed Yanaal

Choosing a method of contraception is one of the most important decisions a woman can make in her lifetime. Unfortunately, due to the taboo around discussing gynaecological trials and tribulations with others, women often feel wrong discussing what’s happening “down there”, even amongst friends. But, it’s good to talk. Especially when deciding which foreign object to insert into your body in aid of hormone control, because who can advise you better on contraception than a friend who has actually been through the procedure herself? Now, don’t get me wrong; I’m not discrediting a doctor’s knowledge of the reproductive system and how it works, but when it comes to how these methods feel, I’d go for experience over textbooks, any day. For every method of contraception, be it the pill, arm implant, injection, or, in my case, a contraceptive IUD, they’ll be a woman who has a valuable story that, in extreme cases, could save a life. So, here’s mine.

My journey with contraception has never been a smooth one. From terrible headaches and chronic thrush caused by the birth-control pill to three-month bleeding and pregnancy symptoms thanks to the contraceptive implant, I’ve tried it all, and nothing ever seemed to work for me and my body. I’ve always been in search of a long-term contraceptive method; I’m married, but we’re not ready for children, so I didn’t want to run the risk of an unwanted pregnancy. After battling with the Implanon contraceptive in my arm for years, I decided to bite the bullet and opt for the birth-control method that my doctor had been incessantly recommending – a method that meant five years of (99%) worry-free protection. Enter: the Mirena IUD.

For those of you who aren’t familiar with the Mirena IUD (or coil, as it’s sometimes referred to), these are the “facts” I was told, and which the website still states:

  1. The device delivers a small dose of progestin directly to your uterus.
  2. The insertion procedure is nonsurgical. You may feel uncomfortable at first, but the pain will subside within hours.
  3. You can have it easily removed at any time and become pregnant right away.
  4. It can be used whether or not you have had children.
  5. It’s considered the most effective form of birth control by The American College of Obstetricians and Gynaecologists.

After considering all the above and my past experiences, it was a no-brainer for me. I booked the 30-minute insertion appointment with the nurse at my local GP, and I looked forward to my contraception worries finally coming to an end.

Between 2000 and 2013, the FDA received 70,000 complaints about the Mirena and, as of November 2015, its manufacturer was facing 3,000 lawsuits involving uterine perforations.

At this point, whether my nurse thought that they were relevant or not, I should have been given other facts as well. As it turns out, the IUD became a popular choice of contraception during the 1970s, courtesy of Dalkon Shield. The device was taken off the market just five years later, after eighteen women died from sepsis, and over 200,000 women claimed pelvic inflammatory disease and infertility caused by the device. Since then, incredible advances and improvements in medicine have seen the IUD become the most widely recommended form of contraception once again. However, it isn’t perfect. Between 2000 and 2013, the FDA received 70,000 complaints about the Mirena and, as of November 2015, its manufacturer was facing 3,000 lawsuits involving uterine perforations. Had I had known this information prior, what happened to me over the next two years could have been (absolutely) prevented.

So, about the insertion. Warning: What you’re about to read is not for the faint of heart. When speaking to a friend who had an IUD, she told me that implantation felt similar to having a pap smear and that she went straight back to work after it was done. She lied. During the procedure, my nurse reassured me, saying I would feel a “slight twinge” when she touched my cervix, but what came next can only be described as excruciating. Having not been pregnant or suffered a miscarriage before, my cervix had been untouched until then. And man, did it protest. As soon as the nurse pulled the trigger on the insertion device and shot the IUD to the top of my uterus, I knew I’d made a mistake. It was almost as if I could feel this foreign piece of plastic gripping onto my insides, and my cervix angrily trying to kick it out of place. My nurse said that, as my cervix was particularly tight, I would now experience mild contractions. WHAT?! Contractions? I signed up for birth control, not labor. Apparently, when the opening of the cervix is met with a foreign object, it does its very best to push that object out. Which is why it does such a great job during childbirth. Cool, but why wasn’t I told this before?

The seven days that followed were filled with writhing around on the sofa, hot-water bottles, painkillers, sleepless nights, blood, sweat, tears, and vomit. Imagine the worst period pain you have ever experienced and multiply that by twenty — that’s where I was at. But being a woman, I was told that I was “being dramatic” and that “everything would be fine”. Fast forward six weeks, and I was once again lying on the nurse’s bed, preparing for my routine IUD check-up. I spent 20 minutes laying there before the nurse finally looked up and said, “I can’t see it.”

“What do you mean you can’t see it?” I asked.

“It isn’t there. It may have fallen out,” she responded.

I didn’t understand. How can something that was inserted so invasively no longer be seen? She called two doctors in for a second and third opinion, and they confirmed the strings were not visible, and that the IUD was nowhere to be seen. I was given an emergency contraceptive pill and sent to the hospital for an urgent ultrasound.

It took multiple trips to the emergency room, three operations under general anaesthetic, nine months of preventive antibiotics, and moving country to get to the root of the problem.

I cried all the way to the hospital. How could the simplest form of contraception be giving me this much aggravation already? This little piece of plastic was supposed to be ending my birth-control woes, not making them worse. During my scan, the doctor reassured me the IUD was still there, it had just migrated further into my uterus due to the shape and direction my cervix was facing, and that it was 100% safe to leave it in place, because it was doing its job. “But what about when I want to remove it?” I asked. “It’ll be a little trickier than normal, but it’s completely doable and nothing to worry about,” she told me. I let out a huge sigh of relief — but little did I know, this was just the beginning.

It was probably around four weeks later when I got my first urinary tract infection (UTI). It wasn’t like the common cystitis symptoms I’d experienced before; it was a different, searing pain deep inside what felt like my bladder. My stomach blew up like a beach ball, I had a fever, and I knew something was not right. I headed to my doctor, who tested my blood and urine before confirming the UTI and a strangely high number of white blood cells. I was prescribed a strong antibiotic and sent on my way. This continued to happen once a month for the next two  years. It took multiple trips to the emergency room, three operations under general anaesthetic, nine months of preventive antibiotics, and, finally, moving to Dubai to get to the root of the problem.

Before moving to the UAE, I’d seen a urologist (who performed embarrassing urodynamic tests and inserted a camera into my bladder), a nephrologist (who put me on strong antibiotics for almost a year and also inserted a camera into my bladder), a nutritionist (who put me on a sugar-free, yeast-free diet and criticized my immune system), and countless emergency-room doctors (who injected me with painkillers and antibiotics and told me it could simply be “pain memory”). But I’d never seen a gynaecologist. Looking back, it was the obvious answer, but why had no one in the UK steered me in that direction?

Not only did I have an extremely infected and bleeding cervix, but I had ten centimeters of fluid surrounding my pelvis, which was in fact Pelvic Inflammatory Disease (PID) caused by my IUD.

My OBGYN in Dubai was amazing. During my first appointment, I explained my recurrent UTI problems, my previous operations, and my full medical history. She performed an internal ultrasound immediately. It was the first time I’d ever had this done, and she confirmed that, not only did I have an extremely infected and bleeding cervix, but I had ten centimeters of fluid surrounding my pelvis, which was in fact Pelvic Inflammatory Disease (PID) caused by my IUD. I burst into tears — of joy. Finally, after a two-year fight and being told I was “making it up” by doctors, that I was “a mystery” by specialists, that I needed to “take better care of myself” by my boss, and that I had a “low pain threshold” by my peers, someone not only believed me but diagnosed me. She was appalled by how I’d been treated previously and rushed me in for an operation to remove my IUD the very next day.

“What is your favorite coffee?” the anaesthesiologist asked me before the fluid ran up my arm and the drugs kicked in. The procedure should have only taken 20 minutes, but due to my IUD being so deeply embedded into my cervix, I woke up in the recovery room almost two hours later with my doctor at the foot of the bed. She told me that she had drained my pelvis, successfully removed the IUD, and performed a laparoscopy (cameras into my fallopian tubes) to check for permanent damage, scarring, and infertility. “Miraculously, there is no permanent damage, and you should be completely fertile. Your cervix is extremely tight and small, and any good nurse should have taken one look at you and known that you were not a suitable candidate for an IUD. This should never have been put in, and it should never have gotten this far,” she explained.

I later learned that pay-for-performance incentives for doctors in the UK were put into place between 2009 and 2014, aimed at increasing the percentage of women using long-acting reversible contraceptives (LARC). So was I prescribed a method of contraception that my nurse knew would cause me pain, because she had her own targets to reach? I guess I will never know.

I discovered thousands of women also shared IUD horror stories. From ectopic pregnancies to migration to chronic infection (like my own), many cases led to infertility.

In the months that followed, I did more research on the IUD. I wish I had had the hindsight to do this four years ago, instead of trusting my doctor. But hindsight is a wonderful thing. I discovered that thousands of women had also shared IUD horror stories. From ectopic pregnancies to migration to chronic infection (like my own), many cases led to infertility. I asked myself the questions again — why are these stories not more widely shared? Today, the official Mirena website positions itself as “a birth control for busy moms”, alluding to the fact that it isn’t really suitable for women who haven’t had children, but later contradicting its own statement by describing the method as “suitable” for all women.

Of course, no method of birth control is “one size fits all” and I am sure thousands of women love their IUDs and would never look back. But, for those of you who are thinking of getting one, I hope you consider my story before doing so, and I leave you with this quote from Mirena’s website, front and center on its home page:

Important Safety Information
If you have a pelvic infection, get infections easily, or have certain cancers, don’t use Mirena. Less than 1% of users get a serious pelvic infection called pelvic inflammatory disease (PID). If you have persistent pelvic or stomach pain or if Mirena comes out, tell your healthcare provider (HCP).

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