Wow, I am so sorry to hear that there are others suffering like me, and yet I am happy to hear I am not the only one! I had Mirena out after about 13 months in, and am now about 4 months post-removal. I hate to see that there are folks who are 14 and more months post, and still having symptoms like me.
After reading Screaming to be Heard and It's My Ovaries, Stupid!, I discovered that many of my (and others') symptoms COULD be caused by hormones being out of whack. Since I was quite certain that Mirena had put my hormones out of whack, I had them tested to see what exactly was going on. Turns out, though I am 35, my estradiol and progesterone are both quite low, as if I'm about to start menopause. DHEA-S was in the middle of the normal range, and I haven't heard back on my testosterone yet. One thing that I am about to do right now, is try to get on hormone replacement therapy. With BIO-IDENTICAL hormones, not the horrid, super-strong crap like what they put in Mirena. I will be sure to report back if I have any luck with this, as I would love to be able to help all you ladies who are sharing here. In the meantime, I'd definitely recommend reading It's My Ovaries, Stupid!, and seeing if your symptoms look anything like what she described. Here are the symptoms I have had:
Anxiety - it comes and goes but it never completely stops
Mood swings/depressive episodes - these happened more before I had it out. Every month I would become convinced that my boyfriend and I were doomed, everything was horrible about my life and our relationship...ad infinitum. These seem to have shifted to anxiety now.
Weight gain - could not lose to save my life with normal diet. I converted to a very low carb plan, with mostly lean meats and lots of veggies. This is allowing me to lose weight (slowly), but it definitely isn't the answer to all of the problems Mirena has caused.
Asthma - actually, I haven't had all of the tests done to fully confirm this (I have no insurance right now, and my health is too poor to hold down a job, so this Mirena aftermath is killing me financially), but one of my docs is pretty sure I have at least seasonal asthma, which for me is manifesting as very dry airways, a tickle in the center of my chest, burning in my chest, and air hunger. This has resulted in a problem for me with hyperventilation, causing numbness in my face, hands & feet, accompanied by chest pain that sent me to the ER.
Diarrhea - This happens worst when I am anxious/stressed. It has resulted in severe mineral depletion, (magnesium especially) and I can't seem to replete no matter what I try.
Cramps/twitches - Menstrual cramps actually haven't been that bad since I had Mirena out, but I have had just about every other kind of cramp imaginable - hands, face, feet, back, neck, side, thigh...and twitches everywhere, to the point that they keep me up at night. I'm good about making sure I get my RDA (and then some, in most cases) of things like calcium, magnesium and potassium, and I drink a TON of water since I'm a low-carber and need it to flush my kidneys. So none of the usual culprits can explain my cramping.
Insomnia - this is partly due to the twitching, cramping, and breathing difficulties mentioned above, but it also manifests as simply waking at some time between midnight and 5am and not being able to get back to sleep for hours, if at all. Naturally, this just aggravates all my other symptoms, especially the anxiety/diarrhea combo.
Muscle pain with anything vaguely resembling exercise. Before this crap, I could hike ten miles with a 40-pound pack in a day. Now if I have to climb the stairs in my house more than 3 times in a day, I'm in pain for days afterward! It took me several weeks just to get to the point where I could sit up and type at a computer for a few hours at a time.
Repeated high neutrophil counts with no known source of infection
Feelings of dissociation
Insulin of 58 (before I started low-carbing)
And I could probably go on for days with my list of symptoms, but those are the worst of it. I have been to therapists, doctors and the ER. I am trying to do everything right, even though it is costing me a fortune. I don't have it licked yet, but I am determined to do so! What I have found so far is that the low carb diet helped, and that sleeping well, or at least adequately, is crucial. When I don't get enough sleep, the whole world crashes in on me and I can barely accomplish anything. It's just that getting that sleep is getting more and more difficult. I used to sleep well when I could exercise regularly. Now just going to the grocery store counts as exercise (in terms of how it wears me out) but then I still wake in the middle of the night and am unable to get back to sleep.
OK, enough of my ranting. I'll be sure to check back in once I've started working on hormone levels, but I would love to hear from anyone who has tried HRT post-Mirena. Thanks for being here and good luck with your health, each and every one of you!