Get a cup (pot) of tea...this is a long one.
I'm not going to give you all of the gory details, but I do want you to know there may be more to the Mirena fact sheet than the FDA is providing to women. I'm NOT saying the Mirena is good or bad, just that you should give deep and thoughtful consideration before you place anything (devices or drugs) in your body. I am not a doctor. Heck, I guess I'm not even really a good consumer since I find myself in this self-inflicted mess up to my eyeballs! This account is simply my experience thus far. There are many, many more stories just like mine, but also many stories of women who had a positive experience. I hope mine has an
I'm a pretty healthy middle-aged woman (yes, I just turned 40) who enjoys the same merry-go-round that most of you do. I am a busy mother, wife, homeschool teacher, scout leader, couponer, volunteer, shopper, cooker, reader, driver, etc,...you get the picture. I was diagnosed with Ulcerative Colitis at 28 and it stays quiet most of the time. I don't always eat right and exercise the way that I should. But I managed pretty well until 6 months in early July, 2011 when I had a Mirena IUD placed. In a word, it was awful! During the actual placement, I thought I just may die. THAT process was highly under-rated and my problems started almost immediately.
Intermittent bleeding and cramping were expected, but NOTHING like what I went through. My belly felt as though a balloon had been blown up inside me and I felt nasty. all. the. time. At my 4 week follow-up, I raised some concerns (tearfully) and my gynecologist dismissed them and told me things would be just fine and to give it 6 months for things to settle down. Settle down? SETTLE DOWN?
Strange little things started happening in addition to the never-ending period. My adult acne worsened, I started to have belly aches and I developed dandruff! I started to gain weight and was hungry all the time with intense cravings for sugar and chocolate. (Now, for those of you who know me, you know I LOVE chocolate, but I literally felt addicted!) I kept waiting to feel better..and never did. I was teary and agitated most of the time. The end of summer drew near and I could not fit into any of my clothes. I wasn't yet fully connecting these dots but I just knew I was about to turn the corner...
And turn the corner I did. My right forearm started to ache and I haven't taken up tennis or golf recently. I took some ibuprofen and bought a clay pack for heat/cold therapy. My knee started to ache. Then, my heels started to hurt. My whole body was aching...I felt like I was physically falling apart. I had just turned 40! My vision was blurry and I was having 'flashes' in my eyes for no apparent reason. Was this what the aging process would feel like for the next 20 years? If so, I was certain I'd be wheelchair-bound within a year if this continued. I saw my general practitioner and was referred (without blood work) for an orthopedic consult. I shared with both the nurse and doctor my concerns about the Mirena and my current situation. The nurse recommended that maybe I should go with my gut and have it removed. hmmmmm....maybe so? Within 2 days of that visit, I had a urinary tract infection. Minute Clinic fixed me right up. Later that week, the arm and hand x-rays showed nothing. I told the nurse and doctor that I wondered if the Mirena had anything to do with my symptoms. They didn't seem to think so. I was diagnosed with tendonitis and prescribed a 2-week prednisone regimen and an arm brace. I was told the knee and heels were just part of aging and if they became bothersome, I should call for another appointment and they would address those issues at that time. The prednisone was also awful - AWFUL. But, my body stopped aching for about 9 days and that was heavenly.....I'm talking open up the clouds, rays of light shining down and the angels were singing- heavenly!
Then, when the prednisone wore off, my body started to strike back with a vengeance. The problem was obviously related to some systemic inflammation, since the massive steroids I had just finished helped me feel better - even if just for a (very) short while. I was already not sleeping and now, I could not button my own pants, drive or take a step without terrible, hot, stabbing, shooting pain in my joints and muscles. My right hand is hot and 3 of my fingers are intermittently numb. A hot wave of pain undulates back and forth in my right forearm ALL the time. I really feel foggy, sad and not inside my own skin. Typing hurt like crazy, but I persevered....I just knew things were going to change. They had to. I started to think I may have Rheumatoid Arthritis or Multiple Sclerosis...I was really scared. I'm too young to lose my quality of life or worse, die. The thoughts that my Mirena may be contributing to these problems really started to get me thinking...and Googling (as painful as it is to type)!
Well, we all know that anyone can find anything to support anything they believe (or don't believe) on the internet. But, I really had no idea. Really. The hundreds of women who have had similar experiences (or worse) to mine. Once I figure out some of these nifty blog gadgets, I'll post some links to other sites and blogs with waaaay more information than you ever wanted to learn about Mirena stories.
I dialed the phone as fast I could last Monday and made the appointment to have the Mirena removed. On Wednesday, December 7, 2011 (after completing my suggested 6-months of due diligence), I had the Mirena removed by my gynecologist. This time, a dear friend drove me and was at-the-ready just in case. That visit was an abysmal disappointment, but I was prepared....with information and questions. I was treated in a terse and uncaring manner. I was provided ZERO information regarding my post-procedure Mirena removal. When I asked about hormone fluctuations and silicone poisoning, she looked at me as if I were an alien. All of my concerns were met with a patronizing and dismissive response that included a reference to the fact that clearly I have "other issues" and should "seek a neurological consultation". Really? My head isn't the problem. My gynecologist was adamant that these symptoms cannot possibly be related to the Mirena and boy, did she get nasty when I told her I would be filing an severe/adverse reaction report with the FDA. Flying in the face of the all-knowing and infallible FDA..how dare I? Anyone ever heard of the Dalkon Shield, DES, Celebrex....that list goes on and on, too. But every one of those things was deemed safe by the FDA when they were introduced. Again, hmmmmmm?
My bloated belly was better by the next day (YAY!!). The cramps and clotting hit Friday (and when I say hit, I mean like an aluminum baseball bat pinging a home run outta the park.) I'm drinking lots of water and some herbal tea for uterine support and taking some supplements to help support my liver during this process. I'm waiting for the Mirena crash....hopefully that won't kick my already-bedraggled butt too badly. The gynecologist insisted that these 'localized progestins' have little affect on anything other than the surrounding female reproductive organs directly near the Mirena site. No systemic hormonal or endocrine changes or progesterone receptor changes? Everything she said directly conflicts with so much of what I've read on the actual biology and chemistry of how synthetic hormones function in our bodies. IF this 'harmless' little IUD works without error, it's a good thing. But if the FDA doesn't provide us with comprehensive information, how are we to know when a related error, malfunction or side effect occurs.
I got mad. I feel duped, tricked, bamboozled. Fast forward to today and my mad is now my voice. I hope my yelling voice didn't hurt your ears, too much and I hope that you'll come back soon to hear my singing voice. It'll be good stuff, for me at least..and I hope for you too. : )
A Native American Proverb tells us, "It takes a thousand voices to tell a single story."
What will your voice say?
I've been seriously contemplating removing mine for about a year... no doctor I've found thinks any of my bloating or aches and pains are from the Mirena.
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