Blog / 2013 / Treating Endometriosis: the Mirena Coil

March 14, 2013

In honor of Endometriosis Awareness Month, I’ve decided to share about my healing journey in some detail. I remember searching for such stories after I was first diagnosed. It didn’t matter that every woman’s path with the disease was so different: I was desperate for any hints. Hopefully, my account will help other women make the right choices for themselves.

By the time I finally had a Mirena Coil inserted, I had been toying with the idea of this hormone-releasing IUD for some time. I’d been chatting with a woman in the UK who had endo and swore by hers, and I had encountered others on the Web who were similarly enthusiastic.

Through Planned Parenthood’s C-Care program, the Mirena Coil, which is normally ridiuclously overpriced in the US, was free. And, once I realized that I was putting unnecessary stress on my body by inducing high blood pressure with the Pill, the Mirena Coil became the obvious choice.

The makers of the Coil along with most medical professionals will tell you that the IUD insertion is no big deal, even if you’ve never done a vaginal birth. But I’m pretty sure that’s just an attempt at hypnotizing you, and it’s an effort that backfires completely. It meant that, after the procedure, not only was I in excruciating pain for the rest of the day as my uterus tried to expel the Coil, but I was also more than a little concerned that the installation process had gone wrong because no one had warned me that I'd be spending the next twelve hours soaking in a hot bath while cursing my very existence.

And once the Mirena Coil had been in for some time, things didn’t get much better. Something else that no one in the Coil’s propaganda machine likes to talk about is the alarming concurrence of intersititial cystitis and this IUD. To be fair, I should specify that I was never actually diagnosed with interstitial cystitis and also that my bladder was already delicate due to my body’s war with endometriosis, but I did spend the month after getting the Coil in a zombie-like state. I was waking up every twenty or forty minutes in the night to urinate until I would finally fall into an exhausted sleep for an hour or two in the early morning. This wasn't a urinary tract infection; this was a bladder that was overly sensitive.

What eventually freed me from this bladder-driven insomnia was getting off refined sugars. I cut them out of my diet for two weeks and started slowly reintroducing them as I felt better. Seeing as my partner is Mr. Stop-Being-Sweet, this process wasn’t as mysterious as it might have been. Inspired by David’s lifestyle, I'd long since noticed that sugar made me more keyed-up and anxious, and I suspected that it might play a part in making my bladder keyed-up and anxious too.

In the two years that I have had the Mirena Coil, I have had to quit refined sugars for a while a few times in order to get my bladder back on track again. I can’t say for certain that this is all the Mirena Coil’s fault, but I would encourage anyone who is considering this IUD to google “Mirena Coil + interstitial cystitis” before deciding.

painted portrait of the profile of a white woman’s face
Gwenn Seemel
Self-portrait
2004
acrylic on canvas
17 x 11 inches

I had the Coil inserted in January 2011, two months after an ultrasound had revealed a mob of endometriomas milling about in my pelvic cavity. By my May ultrasound, there was just one little cyst on my left ovary, but nothing to be concerned about. My gynecologist's response: he didn’t need to see me for a year unless I was in a lot of pain. He felt that good about the prognosis!

And for a while, things were great. I still experienced symptoms of endometriosis and my bladder misbehaved every so often, but I was doing so much better than I had been on the Pill.

Then, beginning in January 2012, the pain worsened and I suspected trouble. My ultrasound four months later confirmed it. The cyst on my left ovary had grown quite a bit, and my gynecologist wanted to schedule a surgery.

So what happened? Why did the Mirena Coil seem to be an endometriosis-ending miracle only to fail me ultimately? I have a theory, and, while it’s hardly scientific, it is backed up by the experiences of other women.

It’s known that stress fuels the pain of endometriosis, but I think it does more than that. I’m convinced that stress can power the growth and spread of the disease too. And, as I described in my last post about endo, the Pill was an enormous source of emotional and physical stress for me. I believe that the oral contraceptives actually made my endometriosis worse for eight months, and laying off the hormone dose was such a relief for my body that it was immediately able to clean up most of the cysts. In other words, I think that the Coil had zero effect on the disease, and that the brief remission I experienced was a result of getting off of the Pill.

For more information about treatments I’ve used, check out these articles:

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