TWELVE YEARS post-Mirena, and I'm still a mess!

My fateful Mirena story began in April, 2004, at 33 years old. I was/am a smoker, so I didn't want to use combination birth control. When I asked my GYN about other birth control methods, she handed me a bunch of pamphlets. Women really get the short end of the stick when it comes to choices...having the lining of my uterus burned to a crisp sounded REALLY unappealing, and the Mirena sounded like the greatest thing since sliced bread, so....

Other than minor discomfort for a few weeks, I had little complaints as far as side-effects. Then one day in June, it was like: I was fine when I woke up that morning, but at some point during the day...I went totally nuts. I had trouble breathing, my eyesight was hyper-sensitive, I shook like a leaf, my heart was pounding like I'd run a marathon, I felt dizzy and lightheaded - I was TERRIFIED...I thought I was dying. My life at that point was a non-stop, 24/7 panic attack. Up to that point, I'd never had a panic attack in my life.

In the following weeks, the panic and anxiety turned even more sinister: I developed suicidal thoughts. I had two young children...there's no way that I'd ever leave them, AND YET, every night after putting them to bed, I'd sit alone and think of ways to kill myself. It was as if I were being remote-controlled by someone else - it was like I was possessed. Then, just when I thought my life couldn't get any worse, I started to think that I'd hurt my children. Now, I'd never, EVER consciously hurt either one of my kids, but I worried that I'd SLEEPWALK and hurt them while I was asleep. I began tethering myself to the bed or to the couch...I thought that, if I had to stop to untie my hands and feet, I'd wake up and stop whatever I was doing. Oh, yeah, I was a mess.

When it got to the point when I thought I'd need to have myself committed, I sat down one night and tried to think of what could be causing my insanity; I knew that there HAD to be something because one does not just go insane overnight (there's a process involved, you know?). I had been physically abused throughout my childhood, and I was a victim of malpractice during adolescence; as a result, I'd had chronic pain since about 10 years old, but I took Excedrin for it -- NOTHING prescription, NOTHING new. The ONLY thing I'd done differently in the preceding months was: Mirena.

So, I hopped on the Internet, and wouldn'tcha know it - Mirena was screwing up other women, as well. So, I called my GYN and told her that I wanted it removed, ASAP, and I told her why. That b-tch actually laughed at me. She said, "I've inserted DOZENS of Mirena IUDs and NEVER had a complaint like yours." My reply: "Maybe your OTHER patients haven't made the connection...?"

In any event, post-removal, the suicidal/homicidal thoughts dissipated, but I still had the raging panic attacks, among other things. I raced to my primary care doctor weekly, if it was after-hours at my PCP office I went to prompt-care, I saw TWO endocrinologists, a eye doctor, two neurologists, took three trips to the E.R., numerous trips to my ENT, saw two different therapists and a psychiatrist - and that's just off the top of my head. All-in-all, after Mirena, I went from a Size 12 to a Size 6 in less than eight weeks. Then, after I finally caved in and went along with my doctor about taking an antidepressant, I went from a Size 6 back to a Size 12.

After Mirena:

-I became textbook PTSD after months of non-stop panic attacks and suicidal/homicidal thoughts
-I developed PCOS (diagnosed by E.R. doctors) when I'd never had a history of gynecological issues
-I developed a goiter on my thyroid (diagnosed by endocrinologist) when I never had any thyroid disorders
-I developed allergic asthma
-I've had chronic fatigue since insertion
-My blood pressure went from historically low to normal/elevated*
-My blood sugar went from normal to pre-diabetic
-PMS became PMDD
-My once normal cycles became HEAVY, HORRIFIC and PAINFUL
-My once every 21-days (like clockwork) cycles became anywhere from 18 to 51 days
-I began shedding my hair like a Labrador Retriever*
-I have acne like a teenage boy (one side of my face looks like raw hamburger - Thanks, Mirena!)*
-My face became very puffy, and morphed from decidedly feminine to slightly masculine*
-I developed reflux/gerd/stomach ulcers
-I developed joint and muscle pain*
-I developed what's called, "Globus Sensation" and feel like I'm being choked
-I began retaining fluid in my hands and feet*
-The heart palpitations that I used to get occasionally became near-constant with hormonal fluctuations*
-I now have a COMPLETE inability to lose weight...it doesn't matter what, how much or how little I eat*
-I began having hot flashes
-I began sweating, A LOT*
-I developed SEVERE heat intolerance*
-My breasts went from a C cup to a EE (yes, a double-E)*
-My chronic pain, that used to be controllable with OTC meds, became unbearable
-I developed persistent, often severe depression
-I became agoraphobic
-Most medications no longer worked for me as intended
-I completely lost my libido
-I became mostly celibate

Everything after which I typed an asterisk (*) above is also a side-effect that I experienced during my first pregnancy; in fact, during the last couple of years, I've started to experience nausea during ovulation, and before and during menstruation. So, it's like I've been living my first pregnancy in a loop for the last 12 years (except for the horrific menstrual cycles) - hell, with the perpetual bloating, I've even LOOKED pregnant for the past 12 years! In many ways, Mirena made me a slave to my hormones...they RULE me - they dominate me.

My happy marriage basically just whithered away - never having sex again because the Mirena severely messed you up in so many different ways will do that to a couple (in this respect, Mirena is possibly THE BEST birth control method around because no sex = no conception!).  As my husband once said, "Why would I want to have sex with a crazy person?"  That was the beginning of the end for any hope I had for continued intamacy in our relationship....

So not only did Mirena affect me - it also affected my marriage, my relationship with my children and my relationships with other family and friends. Because of the panic disorder, I became agoraphobic. And because I was agoraphobic (and severely depressed), I missed a lot of life. I look at photographs of my husband and my kids, and I'M NOT IN THEM - thanks to Mirena, I've been a ghost in my own life...I've missed what should have been 12 really happy years. In fact, it's scarred me so deeply and profoundly, that I now perceive events and landmark occasions in my life as either, "pre-Mirena" or, "post-Mirena."

When I recently went back to my therapist and explained to him how I'm feeling, he told me that it sounds like I'm experiencing the grieving process - I'm mourning the loss of myself, the loss of how my life USED to be...and I'm ANGRY about what it SHOULD HAVE and WOULD HAVE been.  Mirena took ME away from me and my family; IT RUINED MY LIFE. It's been over a decade now; I often wonder if I'll ever get myself back....

Speaking of getting myself back.... I need to mention something that may or may not be VERY significant...I'd like to know if other women have experienced this, or if mine is just an isolated case. About two years after Mirena, I went to the E.R. because my chronic pain was unbearable; I couldn't take enough Excedrin for the pain because of my stomach ulcers, so I sought medical help for it (and also because I thought that I might be having an aneurism). The E.R. doctor gave me the, "stroke test," then when he determined that I wasn't having a stroke, he gave me a shot of Imitrex (thinking I was having a migraine, when I told him it wasn't a migraine). The Imitrex sent me through the roof...it made me nervous and jittery and it didn't do a thing for my pain. So, he diagnosed me with, "tension headache" and sent me home with a prescription for oxycodone.

Now, I'd been given oxycodone before Mirena, and it just made me very, very sleepy; I figured that I'd go home and just sleep the pain away. But something kind of miraculous happened when I took that pill: The pain faded, the fog lifted, the anxiety melted away...and I felt like me again. Here, I'd been looking for myself for two years at that point, and all along, I was in this little pill - it did for me what roughly a dozen antidepressants couldn't do. There's such a stigma involved with prescription pain medication, that I held off for years before I began taking it everyday for pain. The only thing I can figure is that, before Mirena, my system had whatever receptors or neurotransmitters that it needed to help control my pain...and Mirena, either directly or indirectly, took those receptors and/or neurotransmitters away. Has anyone else experienced this phenomenon?

If it weren't for the DEA, I could get the dosage that I need for, not only my chronic pain, but also to get ME back again. Since I've been taking it for so long and have developed a tolerance (and also because I'm a woman), pain management won't increase my dosage of oxycodone; instead, they add a, "long acting" med like morphine, fentanyl or opana, but none of those work for my pain. It's like oxycodone (and only oxycodone) replaces whatever Mirena took away...it fills the gaps. One would think that any opiate would do the job, but it's just not so; NOTHING works for my pain and makes me ME again like it does.

If anyone else has experienced this, I would love to know. I try to explain this to doctors and therapists, and I just get puzzled looks and shrugs. I would LOVE to know WHY and HOW this is, because if I knew the WHY and the HOW...if I knew the mechanics of it, then maybe I could undo whatever Mirena did to me!