The IUD is a Dream Until it Becomes Your Worst Nightmare
My experience with an IUD and a multi-thousand dollar procedure that followed.
I used to see the copper Intrauterine Device (IUD) as a safe, long-acting form of birth control, and the best one at that. For 5 years, I enjoyed hormone and barrier-free birth control without any issues, besides some major cramping in the first few months.
Unfortunately, parting with the IUD was much more difficult for me than having it inserted.
I asked her what we would have to do next. She replied, “Surgery.”
An IUD fits right into the uterus and is made of plastic that is shaped like a “T,” which can be wrapped in copper or contain hormones. The arms extend laterally and it has a string attached that hangs past the cervix so that the device can be removed in the future. The string is about 2 to inches long and should extend 2–3 cm past the cervix. If the strings feel shorter or longer than usual while the device is in, it can mean the IUD is no longer in the right place. There are a variety of ways it can move over time, but it’s considered rare. All the complications that can come with an IUD are generally considered uncommon.
The copper IUD is 99% effective at preventing pregnancy and is thought to work by producing an inflammatory reaction that is toxic to sperm and eggs. It also lasts up to 10 years, and you don’t have to do much to maintain it — you just make sure to check the string.
At the end of my time with the IUD, I felt the actual end of the device extending past my cervix and realized it had not only moved, but it had partially expelled. According to the American College of Obstetricians and Gynecologists, full expulsion only happens to around 2–10% of women, and usually in the first year after getting the IUD…not randomly after 5 years.
Confused and not even sure whether to believe it, I made an appointment with a gynaecologist to double-check what I thought I knew. Originally, she looked and said, “I don’t see it!” and a wave of relief fell over me — but, a minute later, she backtracked… “oh, actually, yep. It’s there.”
I asked her to remove it and was hoping to get it replaced at some point. She grasped the string with forceps and lightly pulled.
“Hmmm… I am feeling a bit of resistance.”
She pulled with a touch more force, and it was out. I had my eyes closed due to the discomfort. I asked her if the deed was done. She said yes, but to look at it — and I sensed disappointment in her voice.
It was missing one of its arms… It didn’t look like a “T” anymore. It now resembled an upside-down capital “L.”
The gynaecologist reassured me everything would be okay, and that she might be able to get the piece out before I left the office. She took a little hook and started searching for it blindly, hoping to feel it and remove it. I held my breath and prayed for success. But, no dice — she couldn’t feel it anywhere.
I asked her what we would have to do next. She replied, “Surgery.”
When she said surgery, she didn’t mean cutting me open. She meant that I would need to undergo a minimally invasive procedure, called a hysteroscopy, which involved putting a little camera up into my uterus through my cervix. Once she found the missing arm, she would take a tiny gripping tool and remove it. The whole thing would take 30–45 minutes, and I would be out cold for all of it.
Though the procedure was less scary than I initially thought, I was still terrified — where is it? Can it hurt me? Will I actually be ok? And what is this going to cost? When I got the IUD, I never expected having to spend thousands of dollars to remove it.
I was 18 years old when I decided on the IUD as my form of birth control. The doctor who offered it did not make clear how disastrous the IUD can be — they ran through the potential risks quickly, such as perforation (usually because of error upon insertion), embedding (highly unlikely, they said) and Pelvic-inflammatory Disease (won’t happen, they told me.) Ultimately, I was reassured that none of these things would happen to me.
I definitely was never told that it could break off inside me. After this experience, I’ve learned that there doesn't seem to good research on how common this is, which is leaving women in the dark when they make decisions on their birth control.
A Short History of the IUD: Growing Use
The original ParaGard copper IUD, known as the Copper T Model TCu380A, was approved by the U.S. Food and Drug Administration in 1984 for use in “parous” women, meaning women who have given birth before. However, it was still available to women who had never given birth. It became available for use in the United States in 1988. Originally, the device was also only approved for use up to 4 years due to lack of sufficient evidence of safety and efficacy past that point. It took until 1994 for the FDA to extend its approval for use up to 10 years.
It took another decade for the FDA to release new changes to its safety guidance, approving the copper IUD for use in “nulliparous” women, otherwise known as women who have not given birth to a child:
“Previous restrictions on its use recently were removed to reflect findings that the risk for pelvic infection is more closely linked to sexual behavior rather than choice of contraceptive.
As a result, the IUD may now be used by nulliparous women and those not in a mutually monogamous relationship, although presence of a stable relationship is encouraged to decrease the risk for STDs and HIV infection.”
— FDA Safety Changes: ParaGard Copper T 380A, Medscape, 2005
In 2001, the first hormonal IUD called Mirena was FDA-approved, followed by Skyla (2013), Liletta (2015) and Kyleena (2016).
Among women in the U.S. who were using some form of contraception, IUD’s started to gain traction in between 2006–2011, and have increased in use ever since.
Much of the research on the safety and efficacy of the copper IUD was supported by the Human Research Programme of the World Health Organization, which attributes the majority of women’s increased usage of copper IUD’s to the program’s research and messaging. The research began in the 1970s, and by 2007, copper IUD use worldwide increased from an estimated 70 million users to 160 million.
In 2012, the American College of Obstetricians and Gynecologists released guidelines that IUDs should be considered the top choice for birth control in teenagers and adult women.
A Dangerous Past
Widespread adoption of the IUD among American women continues to lag behind worldwide rates of use. In 2014, the percentage of women using contraceptives in the North America who chose any IUD was 6.1%, while the worldwide comparison was 22.8%. Asia showed the highest prevalence of IUD’s, with 27% of women choosing an IUD as their form of contraception.
Many attribute this hesitancy in North America to a bad seed known as the Dalkon Shield, used in the early 1970s. At this time in history, the FDA did not regulate medical devices (that didn’t come until the Medical Device Amendments Act in 1976.) Therefor, the Dalkon Shield was released to be used by the masses without FDA oversight — the device caused more than 200,000 women to women make claims that the device had caused serious medical consequences, including pelvic inflammatory disease, miscarriage, and loss of fertility. The manufacturer eventually settled 7,600 claims for around $245 million dollars, and in 1984, they told women using the Dalkon Shield to have it removed.
“Although the Dalkon Shield has not been sold in the United States since 1974, the high level of public awareness of the problems associated with it created enormous doubt about the safety of all IUDs.”
The design was blamed for the outsized number of complications — the multifilament string attached to it was like a ladder for bacteria to climb into the uterus. Since then, medical professionals have had to fight an uphill battle convincing American women that other IUDs are safe — but they seem to have made a lot of headway.
The Choice: What Brought Me to the IUD
When I was 17 years old, I fell in love with my high school sweetheart. We were best friends for a few months, and quickly developed romantic feelings for each other. In January of 2014, we decided to start dating. Soon after that, we fell in love, and decided to have sex.
We started with condoms, but those sucked — not just for him, for both of us. So, next I tried to look for the birth control pill. That didn’t end up working out for me either due to mental health side effects.
Perplexed by my perceived lack of options, I started to review what other birth control existed. I wanted to find something that was not a barrier method, was non-hormonal and was not permanent sterilization. Below is a chart of the options:
Can you tell what options are left when you remove the barrier and hormonal methods? If not, here they are:
- Copper IUD
- Pulling Out
- Fertility Awareness (AKA Natural Family Planning)
- Abstinence (not shown on this chart, I guess we don’t think of that as an option anymore)
At this point in my life, I was not willing to accept the higher risk of the pull out method and fertility awareness — though natural family planning has been shown to be much more effective than we may have previously thought. For instance, the symptothermal and the Two Day methods are actually very effective:
“The symptothermal method, which monitors basal body temperature, cervical secretions, cervical position, and cycle patterns to predict periods of fertility, has been proven effective: its failure rate is 0.4 percent per year with perfect use, and 7.5 percent per year with typical use. The effectiveness of the TwoDay method rivals that of condoms: with perfect use, the TwoDay Method has a 4 percent annual rate of unintended pregnancy compared with 2 percent for condoms; with typical use, 14 percent compared with 18 percent for condoms.”
— Excerpt from a 2012 editorial published in American Family Physician
And… abstinence was definitely out. (Apologies to those of you who hold religious convictions about waiting until marriage.)
So, without knowing how effective natural family planning methods could be, that reduced my options to the Copper IUD. It was the only extremely effective, non-hormonal and non-barrier method that was reversible. I also was sort of familiar with it, because I knew my mother had one for a while.
The Copper IUD can be very expensive — if I were to get one today on my current health insurance, the estimated cost would be about $917. Doctors will typically point to the overall value however, considering how long these devices are said to last: for a ParaGard Copper IUD, the estimate is around 10 years, which means I would pay $91.70 a year overall. As a comparison, the cost of the pill in the mid-range is around $25 a month, which would be $300 a year, more or less — over 10 years thats $3,000. So theoretically, the IUD could save $2,000 if chosen over the pill. That doesn’t take into account medical bills from potential complications.
There are some health insurance plans and programs that also provide women with access to an IUD for free or at least cheaper, but there are also some that cost up to $1,300 out of pocket. When I got my IUD, I was an Alaska Native resident, so I received free healthcare in the state. I was able to get an IUD at no cost to me, which made the decision much easier.
But it turns out, the device has been far from free — it has cost me thousands in medical bills and over a month of pain and anxiety after removal and surgery. If I had understood the full implications of the device, I would not have gotten it.
Modern IUDs: Do the Benefits Outweigh the Risks?
Today’s IUDs seem to be really safe on average, but based on my experience and the experiences of friends and family members, it seems like there are more complications happening than doctors say — and research may be catching up to the fact that IUDs often don’t stay in perfect position or remain intact once removed.
“Malpositioning of IUDs is likely more common than previously believed.”
— Malposition and displacement of intrauterine devices– diagnosis, management and prevention, 2016
To start, studies have found that most women end use of their IUDs far earlier than they are said to last — on average women remove copper IUDs at just 36 months of use, when they last 10 years. According to research, the 5-year continuation rate can be as low as 40%. There are many reasons women may discontinue use — desire to get pregnant, for instance — but often, the reason is due to complications of the IUD itself.
In fact, less than 10% of women get their IUDs removed so they can have a baby. It is much more common to get it removed due to side effects like bleeding, pain, or infection (45%); or device-related issues (32%) according to research. These complications could be due to IUD expulsion, embedment, perforation, ectopic pregnancy — you name it.
In my case, my IUD had partially expelled, and the arm was likely embedded in my uterus, which was why it was a little more difficult to remove and the arm broke off. However, after the hysteroscopy, the doctor still couldn’t find the piece — she ordered an ultrasound and an X-ray to confirm that it was gone, and both showed no signs of it. Luckily, it most likely came out on its own during my period. However, for some women a broken IUD can mean a piece is retained in the uterus, which can embed in the uterine wall.
It turns out, we don’t know how often IUDs are breaking off inside women, but it is catching the attention of lawyers. The prescribing information for the copper IUD mentions that a device can break but does not say how often it occurs — just that there have been reports of it happening.
One plaintiff filed a claim against Teva Pharmaceuticals, the manufacturer of the copper IUD, in 2016 due to the device breaking inside her. The retained arm became embedded deep within the uterus and hysterectomy was recommended to her — luckily, she was able to get it surgically removed instead. The lawsuit claimed that the manufacturers had overstated the safety of the device and heavily marketed it to healthcare providers and patients while withholding important safety information, like the possibility of breakage.
This claim has resulted in more cases being filed — as of December 2020, the all Paragard cases are centralized to be tried together in the Northern District of Georgia in front of Judge Leigh Martin May.
Without knowing how often women are experiencing serious complications like breakage, it seems like deciding whether an IUD is a good option is not as straightforward as the medical establishment suggests. There is an awful lot of effort that has been put into cleaning up the reputations of IUDs so that they are more common today, and tons of articles dedicated to trying to debunk IUD myths that come from the Dalkon Shield. But could the positive press be overshadowing actual medical concerns that need to be addressed?
My initial cost-benefit analysis did not take into account the real risks of a broken IUD — I couldn’t have known. And many are getting IUDs today, not knowing about this risk.
The IUD is a dream until it becomes your worst nightmare.
