The Power in Sharing Your IUD Story

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“We cannot rely on doctors to be upfront with women about the risks of birth control. So, it’s up to us.”

This has become something of a mantra for me over the past few years. Sure, I run into the occasional woman who hears me talking about the risks and accuses me of fear mongering. But for the most part, the women I’ve met are very receptive to having someone tell them about the risks associated with birth control BEFORE they start on it.

As the opening sentence suggests, part of the reason it’s so important to share this information is because we know from numerous women’s testimonies that many doctors are, at best, minimizing and downplaying these risks. 

The good news is that many women are truly starting to hear the truth about these potent drugs. The past few years have witnessed something of an awakening as more women choose to avoid the synthetic hormones in contraceptives.

The bad news is that many people who begin to see the light and recognize that the various forms of factory-produced hormones are unhealthy make the mistake of thinking IUDs are a safer, more natural option. The copper IUD by Paragard is advertised as effective hormone-free options. And some women have even been told that IUDs with hormones, such as Mirena, Lilletta, and Kyleena, are safer than other hormonal options because the drug is localized.

Because IUDs are so extremely misunderstood, it is doubly important to share the facts about the risks associated with these devices.

Open forums, honest conversations

Social media actually represents a pretty good forum for the exchange of real experiences with the various forms of birth control. A plethora of Facebook groups cover just about every aspect of contraceptive use, including several support groups devoted to specific types of birth control. These conversations do a lot to drown out the silence and denial of doctors.

Reading through the litany of posts in IUD support groups will erase any doubt you may have about copper toxicity and/or IUD side effects. The only problem is that most women don’t discover these groups until they have already become victims of the troubling effects.

Exam room revelations

Beyond confirming how common side effects are, the stories shared in these groups often provide amazing insight into how doctors trivialize their patients’ concerns. 

One woman, Jill, recently shared with me an anecdote about having her IUD removed.

As her doctor tried to remove her Paragard IUD, it broke and migrated through her reproductive organs. She was referred to another doctor who could use 3D ultrasound technology to try to locate the broken shard. While discussing birth control with the new doctor, they ended up on the subject of Essure. 

Essure was a metal coil introduced by Bayer as a permanent sterilization alternative to tubal ligation. After being placed in the fallopian tubes, the coil essentially caused fibrous scar tissue to build up, thus preventing pregnancy. But, the device was such a nightmare for women that in 2018 the FDA issued a requirement that Essure be prescribed with a 22-page informed consent document on risks, and Bayer pulled the plug on it, after 16 years on the market. As of September 2020, Bayer has paid out $1.6 billion to women who suffered adverse effects.

The doctor told Jill that she used to prescribe Essure all the time and she still had several of the coils in her stockroom. Curious about the much-maligned device, Jill asked if her patients had complained about any side effects. The doctor literally shrugged and said that a lot of them had, but added that she didn’t really believe it until Bayer sent a letter to doctors about the severe side effects. When Jill asked what she had told women prior to the letter, the doctor said she thought they were crazy and told them that their issues weren’t being caused by the device.

Unfortunately, the only thing that’s shocking about this story is how casual the doctor is in admitting to a current patient how cavalier she had been toward the concerns of previous patients. Unfortunately, her previous reaction to Essure precisely mimics how many doctors currently react to their patients’ complaints about the IUD.

Power in numbers

There are a lot of commonalities in the stories shared in the various IUD groups. Many of the women’s side effects read almost like a carbon copy of previous posts—citing headaches, brain fog, nausea, numbness, tingling, anxiety, depression, unpleasant odors and/or discharge. But, as repetitive as these stories may be, each one is individual—and important to be shared. 

You never know when another woman may be looking for a specific side effect that she is experiencing, and perhaps her doctor has made her feel crazy for thinking it’s caused by the IUD. It really could be the difference in a woman’s sanity to learn that someone else experienced extremely itchy underarms, for example—that it’s not just her.

Private social media groups provide a great, safe space for these conversations, but it’s my hope that women who are comfortable talking about it would create opportunities to discuss it in more public arenas too.

Sharing your IUD story really could save a life

I recently received an email from a woman named Shannon, who was eager to share her IUD story.  She explained that she had spent the past four years fighting PTSD from her IUD, and she wanted to share her story wherever she could.

While in her darkest days, she happened upon one of the Facebook groups filled with women who had experiences just like hers. As she read each of their stories, she could feel her hope returning. These women had once been ignored, alone, and terrified just like she had. But now, their voices were being heard, and they were making a difference by telling other women.

Shannon sincerely believes that had she not found that group, she wouldn’t still be here. Remember, depression and anxiety are among the most common side effects of the IUD (and, in fact, from all contraceptives). Combine that with doctors discrediting your expressed symptoms, and it’s easy to see how anyone could succumb to the feelings of pain and isolation.

My first bout of nausea and brain fog left me completely unable to function  and laid out for 2 weeks. Extreme paranoia and extreme anxiety attacks set in. It was late in summer when I decided that I wasn’t going to make it. I  told my husband my end of life decisions. I was for sure I was suffering from a non diagnosed terminal illness! I developed extreme anxiety, severe eczema and still have to take medicine to revert my eczema. I still struggle with anxiety and extreme fear… If not for the copper IUD Facebook’s page seeing the stories of so many women… I don’t think I would be here! I just wanted it to end and feel better…

Missed time from work… missing out on my children’s lives. I struggled for an entire year of this sickness… several emergency room trips… several doctor’s appointments… put on AntiStress and antidepressants. Nothing reverted the symptoms until the IUD was removed. 

I remember sitting in the OBGYN office as they asked me…. are you sure you want this removed! I said Yes! I had finally taken my health into my own hands and listened to myself. I had it taken out in 2016 and have spent the last 4 years of my life recovering from the PTSD from this device! I have found this page by scrolling and I think of it as fate because I knew one day… somehow the women who were alone and scared and afraid and ignored—their voices would one day be heard!  Thank god for those sharing their story of the silent and half dead due to this device!”

Shannon overcame her battle thanks to those women who were courageous enough to share their stories, but she also recognized that the discussion shouldn’t be limited to a private Facebook group. I admire her determination to speak about it publicly, and I hope her story reaches many more women who are going through the same feelings of isolation right now.

If women cannot rely on doctors to be upfront about the risks of birth control, it’s up to us.

Mike Gaskins works as a writer/producer in all forms of media. His 2019 book, In the Name of The Pill, examines the powerful forces that gave us birth control before it was proven safe, exposes the deceptive tactics used to keep patients in the dark, and explores the numerous ways women’s health has been sacrificed In the Name of The Pill.

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