How can I know the copper IUD is safe?
July 28, 2018 8:14 AM Subscribe
I've had my IUD for nearly 5 years and haven't thought much about it. Yesterday I saw the Netflix documentary about botched insertion/removal of (or just generally harmful) medical devices "Bleeding Edge." Many of the women who had been affected negatively by the Essure had been reassured that it was safe before and after it had been inserted. The documentary insists that people within the pharmaceutical industry pushed Essure onto the market despite concerns that it could cause harm.
I don't really know anything about the copper IUD. How would I know if it had been slipped into the market in the same way the Essure had been? Even when women started speaking out about the Essure they were told it was not unsafe. There are women now speaking about possible side effects of the IUD (copper toxicity, bloating, anxiety, etc).
My main question is how would I be able to tell if these claims are woo, or hold value? And I guess, what would be best practices in the future when facing medical decisions?
I don't really know anything about the copper IUD. How would I know if it had been slipped into the market in the same way the Essure had been? Even when women started speaking out about the Essure they were told it was not unsafe. There are women now speaking about possible side effects of the IUD (copper toxicity, bloating, anxiety, etc).
My main question is how would I be able to tell if these claims are woo, or hold value? And I guess, what would be best practices in the future when facing medical decisions?
It is reasonable to be cautious about any new pharmaceutical product, especially in women's health where adverse symptoms are often not taken seriously. The good news is that copper IUDs have been around since the 1970s, so my take is that if there was going to be a controversy, it would have already happened.
That said: side effects of birth control are real. Some women really suffer, for instance, on hormonal birth control and their suffering is not always taken seriously by doctors. You have to be your own advocate and pay attention to what's right for your body.
I researched the heck out of my hormonal IUD and felt it was a good choice for me. I do have minor side effects, but none of them are mood-related, and they're outweighed by the wonders of not taking a daily pill, having a period, or risking an unplanned pregnancy.
posted by toastedcheese at 9:23 AM on July 28, 2018 [5 favorites]
That said: side effects of birth control are real. Some women really suffer, for instance, on hormonal birth control and their suffering is not always taken seriously by doctors. You have to be your own advocate and pay attention to what's right for your body.
I researched the heck out of my hormonal IUD and felt it was a good choice for me. I do have minor side effects, but none of them are mood-related, and they're outweighed by the wonders of not taking a daily pill, having a period, or risking an unplanned pregnancy.
posted by toastedcheese at 9:23 AM on July 28, 2018 [5 favorites]
The copper IUD has been in the global marketplace for decades on a scale that dwarfs Essure. It's safe and reliable. It's good to do research about new drugs and devices (I much prefer old standbys with lots of data to new things in my own care). In your case, the copper IUD should be considered a very safe classic and not at all like Essure, which was a preventable nightmare.
posted by quince at 9:45 AM on July 28, 2018 [10 favorites]
posted by quince at 9:45 AM on July 28, 2018 [10 favorites]
If anecdotes are a thing you’re interested in, I’m on my second copper IUD, about fifteen years total, and never a moments problem.
posted by LizardBreath at 10:24 AM on July 28, 2018 [2 favorites]
posted by LizardBreath at 10:24 AM on July 28, 2018 [2 favorites]
Best answer: I think you are generally right to be cautious, particularly about new treatments, and particularly of those aimed at women. However, I am more confident about T-shaped IUD's very very specifically because IUD's in the USA have a history which includes the Dalkon Shield, which resulted in horrendous complications, massive lawsuits, and eventually led to FDA regulation of medical devices. IUD's still carry some stigma for some people today, and reintroduction of the IUD into the United States was done under a lot of scrutiny.
You can often find a summary of clinical trial data from the FDA. The copper-T IUD information, for example, is here. You will notice on page 9 a list of possible adverse side effects, but more importantly you will see a summary of rates by year.
I once had a professor tell me that you never wanted the newest and latest of anything; you wanted something that had been tested in other people for a long time. The copper-T IUD has been around since the 1970's and has been tested for a long time in other people.
posted by Comrade_robot at 10:38 AM on July 28, 2018 [2 favorites]
You can often find a summary of clinical trial data from the FDA. The copper-T IUD information, for example, is here. You will notice on page 9 a list of possible adverse side effects, but more importantly you will see a summary of rates by year.
I once had a professor tell me that you never wanted the newest and latest of anything; you wanted something that had been tested in other people for a long time. The copper-T IUD has been around since the 1970's and has been tested for a long time in other people.
posted by Comrade_robot at 10:38 AM on July 28, 2018 [2 favorites]
For context, another thing that was released to the public in the 1970s after much testing and research is ibuprofen
And sure, anyone taking it should read carefully about possible side effects and contra-indications. But most of us don’t stress it, for fairly good reasons. It’s safe and effective, and has been a good choice for many people for 40+ years.
posted by SaltySalticid at 1:19 PM on July 28, 2018 [1 favorite]
And sure, anyone taking it should read carefully about possible side effects and contra-indications. But most of us don’t stress it, for fairly good reasons. It’s safe and effective, and has been a good choice for many people for 40+ years.
posted by SaltySalticid at 1:19 PM on July 28, 2018 [1 favorite]
Doctors will warn you that you risk anemia from heavier periods and bacterial vaginosis with a copper or Mirena IUD. I got both in the 3 months after insertion but I was warned. Today I am happy with my IUD and don't have any side effects but have been wondering if my already-thin hair is thinner these days due to the anemia. This can be fixed by upping iron intake.
That's all I can tell you. But there is a lot of information on the web, and not to be conspiratorial but i would not be surprised if some of the sources behind it are funded by hormonal contraception companies. Obviously, depending on the location you have it inserted, paying once for an IUD you have for 8 years is a much better deal than 8 years of birth control. Companies that sell daily birth control pills are threatened by the rising popularity of the IUD, both hormonal and copper.
Curious to hear others' stories.
posted by jacobnayar at 2:41 PM on July 28, 2018 [1 favorite]
That's all I can tell you. But there is a lot of information on the web, and not to be conspiratorial but i would not be surprised if some of the sources behind it are funded by hormonal contraception companies. Obviously, depending on the location you have it inserted, paying once for an IUD you have for 8 years is a much better deal than 8 years of birth control. Companies that sell daily birth control pills are threatened by the rising popularity of the IUD, both hormonal and copper.
Curious to hear others' stories.
posted by jacobnayar at 2:41 PM on July 28, 2018 [1 favorite]
Best answer: Here’s a “repeatedly told not to worry despite complications I considered unacceptable” anecdote.
Several years ago, I had a harrowing time with Paragard. Insertion pain (not “cramps,” but steady, excruciating pain and inflammation) persisted for three days, to incapacitating levels. The (male) doc on-call kept insisting I should just take ibuprofen and ride it out. Ibuprofen has never worked on any kind of pain for me, and it did eff-all for that. After losing a whole weekend, though, I was able to walk again.
Still, I continued to have severe, sharp, non-menstrual pain at unpredictable intervals, often so bad I fainted from it. A follow-up with my (male) OBGYN was unhelpful; he swore it was placed correctly with no evidence of perforation or infection. He admitted that my uterus was tipped and that he hadn’t known I was nulliparous (?!), but said he wouldn’t have done anything differently. I stuck it out for a year and a half and it never got better. Finally, I went to another clinic just to have the damn thing removed, and their (female) staff also said nothing appeared to have been wrong. So, if severe pain and recurrent syncope aren’t enough to suggest something is unsafe, it’s probably even safer for someone who isn’t experiencing those effects. (Forgive my kidding on the square. “Everything looks fine,” however true, is never a satisfactory response to “I keep fainting in public and it feels like a knife-throwing contest is happening in there.”)
More recently a (female) CNM validated my experience and said all this was more than reason enough not to want to try any other IUD. I suppose this is all to say that any treatment prescribed to a woman is only as good as her provider’s willingness to take her symptoms seriously. I realize I am an outlier, but I’ve heard a few friends report similar experiences with their copper coils. Or misery with their pills/shots/implants/rings. We all have to undergo so much trial and error. We all risk the “hysteria” label if we voice our concerns.
For the record, I’m an accountant for the OBGYN department at a major research university. I’m aware of massive studies on the efficacy and acceptability of IUDs for patients from various backgrounds. I’m aware of the popularity of IUDs among much of our patient base as well! Medicine overall, and contraception especially, is still fraught with examples of women being expected to tolerate gross degrees of suffering for the sake of “outcomes.” Improvement is happening, but at glacial pace.
My takeaway for you is, don’t stress if your method isn’t bothering you. Raise hell if it is.
posted by armeowda at 4:56 PM on July 28, 2018 [6 favorites]
Several years ago, I had a harrowing time with Paragard. Insertion pain (not “cramps,” but steady, excruciating pain and inflammation) persisted for three days, to incapacitating levels. The (male) doc on-call kept insisting I should just take ibuprofen and ride it out. Ibuprofen has never worked on any kind of pain for me, and it did eff-all for that. After losing a whole weekend, though, I was able to walk again.
Still, I continued to have severe, sharp, non-menstrual pain at unpredictable intervals, often so bad I fainted from it. A follow-up with my (male) OBGYN was unhelpful; he swore it was placed correctly with no evidence of perforation or infection. He admitted that my uterus was tipped and that he hadn’t known I was nulliparous (?!), but said he wouldn’t have done anything differently. I stuck it out for a year and a half and it never got better. Finally, I went to another clinic just to have the damn thing removed, and their (female) staff also said nothing appeared to have been wrong. So, if severe pain and recurrent syncope aren’t enough to suggest something is unsafe, it’s probably even safer for someone who isn’t experiencing those effects. (Forgive my kidding on the square. “Everything looks fine,” however true, is never a satisfactory response to “I keep fainting in public and it feels like a knife-throwing contest is happening in there.”)
More recently a (female) CNM validated my experience and said all this was more than reason enough not to want to try any other IUD. I suppose this is all to say that any treatment prescribed to a woman is only as good as her provider’s willingness to take her symptoms seriously. I realize I am an outlier, but I’ve heard a few friends report similar experiences with their copper coils. Or misery with their pills/shots/implants/rings. We all have to undergo so much trial and error. We all risk the “hysteria” label if we voice our concerns.
For the record, I’m an accountant for the OBGYN department at a major research university. I’m aware of massive studies on the efficacy and acceptability of IUDs for patients from various backgrounds. I’m aware of the popularity of IUDs among much of our patient base as well! Medicine overall, and contraception especially, is still fraught with examples of women being expected to tolerate gross degrees of suffering for the sake of “outcomes.” Improvement is happening, but at glacial pace.
My takeaway for you is, don’t stress if your method isn’t bothering you. Raise hell if it is.
posted by armeowda at 4:56 PM on July 28, 2018 [6 favorites]
I second armeowda’s last sentence very strongly.
posted by ocherdraco at 6:38 PM on July 28, 2018 [4 favorites]
posted by ocherdraco at 6:38 PM on July 28, 2018 [4 favorites]
Of all the long-acting contraceptive devices on the market, a copper IUD is probably the one we have the most data about. I also watched the documentary and boy do I get it, but it's in an entirely different world from Essure.
posted by fiercecupcake at 9:07 AM on July 30, 2018
posted by fiercecupcake at 9:07 AM on July 30, 2018
Also, if you liked "The Bleeding Edge," please also read Jeanne Lenzer's DANGER WITHIN US, it's very good and she appears in the film as well.
posted by fiercecupcake at 9:59 AM on July 30, 2018 [1 favorite]
posted by fiercecupcake at 9:59 AM on July 30, 2018 [1 favorite]
Hey! I want to chime in! I'm actually a victim of copper toxicity from paragard. I ended up with racing thoughts, heart palpitations, crying daily, personality shifts, paranoia that would cripple anyone. I'm in a class action law suit with other women and it was nearly impossible to sue paragard because "nothing broke off in my body and there was no physical damage" and "you can't prove anxiety". The dalkon shield was taken off the market and there is a gag order on the women who where victims of it so we have no idea what their symptoms where. Paragard re-emerged in 1998. I wouldn't be surprised if there are women walking around with mineral imbalances issues from the copper iud and are most likely taking unnecessary meds for misdiagnosed issues that are actually related to the iud. Mineral imbalances (more or less depending on the woman) can indeed happen from the copper iud, and I agree with armeowda's comment "We all risk the “hysteria” label if we voice our concerns." I called the Paragard company, told them my story, and the rep on the phone said “sorry that happened but the bottom of the box says ‘this is not a complete list of side effects..so sorry”. I looked at the package insert and it does indeed say "this is not a complete list of side effects". There is no complete list! The company is aware of this happening and research (actually not a lot of research done) has been blood testing and copper in access can only show up in hair testing or HTMA testing because it is tucked in tissues and tissue organs. Also the testing (blood again) in rats from China has come from a country where they have forced copper iuds on women because of the one child policy, I do believe that it could be biased research. I get different answers from every obgyn on exactly how the copper iud works. I do not have Wilson’s disease or a copper allergy. And my levels where not “already high” beforehand. I’m extremely let down by the medical community on this topic and that women who report symptoms aren't taken into account. I know there have been deaths in the past from this but was written down as "something else". I would definitely take women's "anecdotal" symptom reporting into account. It's been 2 years since I've had the iud in but I lost everything at the time including massive pieces of myself. I'm fine now and it was the scariest year of my life.
This product has been able to stay under the radar. Hopefully the problems with this iud are going to become more prevalent as it becomes more popular. There are two different copper iud documentaries coming out in the next couple of years. Best to you!
posted by dp3515 at 11:32 PM on December 30, 2018
This product has been able to stay under the radar. Hopefully the problems with this iud are going to become more prevalent as it becomes more popular. There are two different copper iud documentaries coming out in the next couple of years. Best to you!
posted by dp3515 at 11:32 PM on December 30, 2018
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In general, I try to not put too much stock into specific individual narratives, but I do look at how new a health product or procedure is, how well studied it is, what the high and low-likelihood risks are, and how addressable any side effects might be. For instance, mood swings are terrible, and some people are more sensitive to that kind of thing than others, but it's (relatively) easy to discontinue a hormonal birth control or remove a hormonal IUD and see if they stop. (Which I did, with the Mirena, and damned if my mood didn't improve in 2-3 months.) In contrast, I wouldn't have gotten the Essure procedure because it was billed as irreversible.
posted by deludingmyself at 9:11 AM on July 28, 2018 [10 favorites]