Nicole’s Story

In early 2017, I had a Kyleena IUD placed. I had been on some form of Ortho for many years and never experienced negative side effects, but I had been convinced by a few friends that an IUD would be easier and more convenient.

My doctor suggested Kyleena because it was the newest IUD with the lowest dose of hormones, which was a concern for me, since I suffer with migraines. I had it inserted in April of 2017 and had persistent pain from day 1. I had terrible cramping similar to the worst period pain, but was told it was normal and would go away after a few weeks—I just needed to push through.

Not only was I in pain everyday, but my digestive system slowed to a crawl. At some point, I started losing hair. It was gradual at first, so I thought I was just shedding a little more, but by August, fistfuls of hair were coming out in the shower. When I went to consult an ObGyn (not my regular—I couldn’t get a appointment with her soon enough) and explained what was happening—that I was losing my hair and absolutely nothing else in my life had changed so it MUST be the IUD—she told me that was impossible, that I was crazy. When I said there were lots of women’s accounts I found online about hair loss and IUDs, she became irate and told me that she’d spent 12 years in medical school and how dare I question her. I left her office crying and exhausted. In September 2017, I had the IUD removed.

I saw my regular doctor to make sure the hair loss wasn’t due to an underlying condition I was unaware of—my blood work came back normal. I saw my dermatologist just to be sure, and he immediately diagnosed the hair loss as Telogen Effluvium, caused by some sort of physical stress and assured me I wouldn’t lose ALL of my hair, but it would take years for the cycle of fallout to end and for my hair to grow back. Again, the only thing that changed in my life was the IUD.

After I had the IUD removed, I developed bacterial vaginosis, which I had never had before and have subsequently learned can be caused by an IUD. I had to go through two round of antibiotics to get rid of it. Meanwhile my digestive system slightly improved, but has slowly gotten worse over the past three years. I’ve seen three GI doctors, had multiple tests, taken medications that proved useless, and no one has been able to diagnose me. Before the IUD, I never had any digestive problems. I had an iron stomach and was super healthy. After the IUD, I’m in pain every day and have spent a ton of money hoping someone can figure out what’s wrong with me. I’ve taken and implemented every piece of advice available from special diets to getting more fiber/water/exercise—it’s all useless and has had no effect on my symptoms. Because of the digestive issues, I also have persistent low B12, which contributes to the fatigue I feel from the digestive issues. Most of my hair has grown back, but it’s still not anywhere near normal. Every few weeks I see more new hairs growing, but I don’t think it will ever be the same.

I feel like I was never given the proper information to make an informed decision about the IUD. Many of the side effects that presented themselves in trials and are listed in the device literature were not communicated to me by my doctor, including hair loss. I’ve since realized that putting a foreign object in my body was not a great idea—it’s something I regret everyday. I’ve also since realized that those same friends who told me they loved their IUD also suffer from things like IBS or other conditions which cannot be explained by the medical community and I’m convinced they’re connected. I tell every woman I meet who even mentions an IUD what happened to me in the hopes they won’t make the same decision I did. I do not think IUDs are safe, period.