Cautionary Tale: IUD caused autoimmune reaction

Hi everyone,

I've put off telling my story because it's long, but I wanted to put it out there to save anyone else from going through the same thing.

I had a Paragard (copper) IUD for three years, experienced very heavy bleeding and frequent, drenching nightsweats, but otherwise everything was okay. Until March, when I got the flu. The day after my flu symptoms disappeared, I came down with debilitating lower back pain, akin to back labor. I found out later that the area was called a sacroiliac joint, or SI joint, where the spine meets the pelvis. It was a 10+ on a scale of 1-10.

I also experienced horrible "nerve pain," a feeling like I'd just stuck my finger in an electric socket, terrible waves of pain through my arms and legs. I'd never felt anything like that before, and I pity people who live with that kind of pain. It is awful. It hurt to walk, like walking through knives.

What was more troubling was that I was crippled with fatigue and some days could not even lift my head off the pillow. I could not lift my purse, I was so weak. I couldn't open doors. I could barely grip the steering wheel to drive myself to the doctor.

I also had a low-grade fever all day, like 99 or 100, which is not like me. I saw 10 doctors in the three months I was sick, and not one of them knew what was wrong with me. They considered but ruled out lupus, thyroid problems, etc.

I was also having UTIs, one after another, and seeing my OB-GYN for that. On one of those visits I asked them to remove my IUD, hoping that was the problem. The doctor said she had never heard of an IUD causing my kind of problems, but she did it anyway.

I didn't get well right away--I actually thought I had fibromyalgia and therefore saw a massage therapist and acupuncturist, who both helped me come out of the hole I was in, health-wise--but within a month or so, I was better and could return to work and my normal life. I didn't understand what had happened to me, but I was just extremely grateful to be alive.

I didn't put two and two together until that fall, when I got a new IUD, this time a Mirena.

In less than 24 hours, that insane joint pain returned. It was incredibly painful, creeping up my back and keeping me from sleeping. My low-grade fever returned, too, and I have no doubt that the nerve pain would have returned had I not gone to the doctor and demanded to have it removed. Again, they were skeptical but did as I wished.

And I'm fine now. No health problems at all. I know no doctors would believe me, but I think my immune system went into hyperdrive when I had the flu and then attacked my IUD. The closest joint to a uterus is the SI joint (many autoimmune diseases include joint pain). I'm certain that's what happened to me, and I'm relieved that I'll never have to go through that kind of pain again.

Again, sorry for the long story, but if you have an IUD and suddenly have an autoimmune freakout, get your IUD removed. Rheumatologists would probably scoff at such a theory, but I know what I know.

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