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Intrauterine devices. Many people love them—or hate them. You may have heard horror stories—for example, that, not only can IUDs fail at preventing pregnancy, it can migrate and lead to a perforated uterus. (Yikes.) If you’re like me, you also may have heard peers express an unconditional love for IUDs you didn’t know was possible to feel toward an implant device. (As it happens, more than one person has told me, in the context discussing IUD side effects, “whatever—I love my IUD!!”)

I want to know what real women think about these things, beyond the drama or extremes. So, I sent out a public survey via social media asking women to share their experiences with IUDs. I also read online about women’s experiences with IUDs, ranging from blogs to mainstream outlets. From my survey and review of various publications, what I found was that many women find IUDs painful in varying degrees. Some gloss over these symptoms and endure them, while others turn it into motivation to seek better options. Still others say the IUD is working great for them and report no problems whatsoever. But after reading multiple accounts from women speaking of excessive pain and bleeding, and brushing it off as just an occasion to take Ibuprofen and suffer in silence, I can’t help but wonder how many IUD users have dulled themselves to the pain.

It’s one thing to take ibuprofen to reduce the pain of a temporary procedure, but it’s another thing to desensitize yourself to an unhealthy level of pain with no end in sight. The bad cramping upon IUD insertion is one aspect that almost every woman (who is not on strong painkillers) seems to experience—and that’s the lucky ones.

Maria, 35, who responded to my survey, said that she got the Mirena IUD on her doctor's recommendation shortly after giving birth. Within an hour of having the IUD inserted, Maria “passed out due to the pain/dizziness.”

“I passed out in their office (resulting in a bumped head and CAT scan). . . . I only had it in a month but after pain subsided, I felt apathetic, complete loss of libido which is VERY unlike me. Also lots of weight gain despite breastfeeding.” The “personality changes” and loss of libido, Maria describes, were “huge for me,” and overall she felt indifferent to everything and “zombie-like.” It was a “very bad fit for me,” she says. She experienced a month of overwhelming side effects before she couldn’t take it anymore.

Kelsey also had her first IUD, ParaGard, inserted when she was postpartum. At Natural Womanhood, she writes, “my midwives encouraged me to try a copper IUD as a hormone-free method of birth control. This sounded perfect! . . . . So I had it inserted 12 weeks postpartum and all was well.” But after a month, Kelsey started having debilitating symptoms: “I started having dizzy spells, several a day! To the point that I was worried about being home alone taking care of our daughter if I passed out or couldn’t stand up. It had me really concerned. I also started having these extreme mood swings. . . My first (and everyone else’s) reaction was ‘oh it’s just your hormones! You’re postpartum, and your body is just trying to get back to normal.’ But it didn’t make sense to me because I hadn’t experienced any of those symptoms in my first several months postpartum.”

After Kelsey “started having strange sharp pains in what felt like my uterus,” and “shooting pains that continued down my legs,” she attempted one last appointment with her doctor, saying if she didn't see her she'd admit herself to the emergency room. Her doctor discovered the IUD was “out of place and in my cervix.” After the doctor removed the IUD, Kelsey says, “the pain stopped immediately, and ever since that day I have not had a single dizzy spell or mood swing like I experienced those months I was on the IUD.”

Losing More Than Blood

After hearing Kelsey’s account, I read more women’s IUD stories online and found them disturbing as well, but for different reasons. I found accounts nearly identical to some of the symptoms described above, but with women justifying them as just an unavoidable part of life.

One woman named Samantha Slabyk shared her story at Medium in 2017. Samantha lists among her symptoms skin breakouts, “erratic and unmanageable” moods, heavy periods that lasted for more than a week, nausea, dizziness, and extreme fatigue. In addition, she could hardly enjoy the sex life the IUD was supposed to be making simpler for her. Sex led to “debilitating pain on my left side” to the point where she could not “relax [or] feel pleasure,” and it “killed the intimacy between me and my partner.” Still, Samantha says, “through all the pain, discomfort and negative changes, I swore I loved my IUD. I was convinced that these were just temporary symptoms that would go away eventually. . . . I still held out hope that maybe there was some mechanical problem with the IUD rather than the IUD being the problem itself.”

One woman, on her personal Tumblr page, shared with readers her play-by-play experience with ParaGard: “Still cramping like whoa but I feel okay. It’s just like the worst period cramps of my life . . . on and on in waves of sharp pains.” She forged ahead, but her writing belied deeper anxieties: “my sister got (well, tried to get) an iud several years ago and… it f—ed her up, permanently.”

At Marie Claire, a woman shared an account that sounded less like health care and more like an injury. “After the insertion, which hurt really badly, I fainted. No one was in the room, and I felt really nauseous and was in a lot of pain. Unfortunately, the nurses didn't handle it very well and I didn't get much recovery time. I hobbled down to my car and lay down for a while because I didn't think that I could drive. Eventually I got home, but I had to get a codeine pill and it was a lifesaver.”

At Reddit, one woman described her copper IUD insertion saying, “I bled suuuper heavy for the next 2 weeks. Like, bleed through a super tampon and a pad in two hours heavy. Terrible cramps everyday for the first about 3 months. Periods were 10–12 days long, very heavy with a lot of cramping. Two hospital visits because the pain was so bad. It made me more prone to infections (I had never really had any prior to having it).”

I am not someone you’d call squeamish about the topic of blood. I was raised by two healthcare professionals whose early practice of medicine was on the battlefields of Vietnam. And I have never heard something so horrifying in my life. How did this poor woman make two hospital visits and get sent home to continue experiencing these nightmarish symptoms?

What really gets me about these women’s accounts is the sense of the pain being on another level. As another woman shared at The Everygirl, “I handle pain extremely well, but it was the worst pain I’ve ever felt in my life. . . . I returned to work still trembling from the pain. The next 12 months were awful. While PMSing, I experienced painful cramping, raging hormonal acne, fatigue, and even mood swings. I got my period every month, but I never knew what to expect—sometimes it was super heavy, just spotting, or nothing at all!”

What concerns me, after reading multiple women’s accounts, is the sense that women blame themselves if they experience excruciating pain, as if they should have read up on it and known. As another woman put it in the EveryGirl article, “Getting [the IUD] put in was very painful, much worse than I expected (I should’ve taken medicine before I went like they advised). I love not having to worry about the pill, especially because I’m sexually active with my significant other. But I do experience bleeding after sex and frequent spotting, even a year and a half after getting it put in. That’s the major con.”

These last two accounts indicate the women experienced more than a year of excessive bleeding and pain, to the point where it brought disruption to their lives, but still they pressed on. In the same article, another woman shares, “Although it hurt to install, I’d recommend it to everyone.”

A Return to Intuition

Whether one has an IUD currently or is considering one, I think that when it comes to women’s health, we can do better than assuming debilitating pain is a necessary cost of pregnancy prevention. I find it offensive —and deserving of great concern and investigation—that women who experience such atrocious symptoms are expected to swallow the pain for long periods of time and considering it a part of life. It’s one thing that any women are experiencing these severe symptoms at all, but it’s a potentially deeper problem, to me, to see many gloss over these symptoms and accept them as a part of life. How did we get to a point where as many as “12 months” of life-altering side effects are not only acceptable and allowed to continue, but excused?

Kelsey is one of the women who got her IUD removed in the ER after previous doctors discounted her dizzy symptoms as an unavoidable part of postpartum life. Now that the IUD has been removed, Kelsey is learning a fertility awareness-based method of avoiding pregnancy, which can be as effective as major forms of birth control but without the side effects. “I cannot say enough about how much of a relief it was to have those symptoms gone and to know that I can really trust my intuition when it comes to my body and what it’s trying to tell me,” she says.

I find Kelsey’s voice a hopeful perspective in all this mess—one that speaks to the importance of listening to our bodies, instead of brushing bad side effects under the rug.