1 year post removal-am I crazy???

Hello All,

My road has been a LONG one and it is not over yet. I have been feeling ill for over 1 year now. I had some suspicions that my Mirena IUD may have been causing some unwanted side effects, but it seems that it may be the cause of what has been an exhausting physical, mental, and emotional roller coaster. After stumbling on these posts I can't help but wonder if in fact Mirena is the culprit that has taken away so much from me over the last year. I am curious to get the opinions of those of you who have experienced the ill side effects of this drug...

Immediately after placement(June 2011), I experienced the HEAVIEST and WORST "period" of my life. I am no stranger to long and heavy menstrual bleeding, however this was almost unbearable. I soaked through 2 boxes of super plus tampons and 2 boxes of heavy duty pads. I was absolutely miserable trying to fight through the pain of the cramping--it was to the point where if it didn't stop soon, I was going to call and beg for pain medication--it almost felt like early active labor. Eventually it did stop (I think after 2 weeks?)and I attributed the bad experience to a combination of the Mirena placement and having my first post-baby period.

For the most part, my period completely went away and I enjoyed not having to worry about taking a birth control pill everyday, especially with a new baby at home. I did lose my sex drive--I gave in occasionally, but it wasn't the same as before (being a first time mom I brushed it off as being busy and tired). I also lost a lot of energy--I had always been someone who required a lot of sleep, but I slowly felt like I couldn't become motivated to get out of bed in the morning, go to the grocery store, plan my wedding(which i'd been waiting for for 10 years) and more. I also think some of this was Depression related perhaps (not diagnosed). I also noticed that I would occasionally get dizzy. I noticed this most when driving, but it happened sporadically and not too often and never lasted so I ignored it for several months since it wasn't life altering. About 6-8 months after placement I began to experience periods of nausea and sensitivity to smells, even food cravings. These "false pregnancy" symptoms would come and go and each time I would take a test, just to be sure. They were ALWAYS negative.

Around January-February 2013 I was nauseous ALL the time, was having heart palpatations, dizziness, feeling faint (multiple times/day), SEVERE anxiety, EXTREME fatigue, poor concentration, also some occasional low blood pressure and head fogginess. This is when I felt my life was totally stripped from me and it has only become more frustrating. After several weeks of this not passing, I finally called my family doctor. He began testing for a wide array of issues including lymes disease, thyroid issues and much much more. After my initial round of bloodwork (which was VERY comprehensive) all came back totally normal and showed I was healthy. He advised me to cut out my caffeine intake (as did the ER when I went there one evening as I was feeling sooooo bad--they even went so far to tell me it was caffeine overdose). So I quit drinking coffee completely and cut out the occasional soda I had. At my follow up appointment after the bloodwork and caffeine cut out, I mentioned the anxiety as I couldn't stand it any longer. I was prescribed Ativan (a very low dose) as it had worked for me in the past and we decided to go ahead and have my Mirena removed as I appeared healthy and it was the only thing I had been introduced to that was different about my life and health. I made an appointment with my OB immediately to have it removed. Removal would have been end of April 2013. When I saw the OB she asked why I was having it out (keep in mind I had just seen her about a month or so prior for a regular pap and had mentioned some of my odd symptoms, asking if they might be related to the IUD) I told her I had consulted with my family doctor and we did some bloodwork that was normal, but we are going to eliminate the Mirena to see if it helps. She immediately went on the defensive and made me feel like I was crazy for even thinking that for a second.

I remember the week after it was out and the few weeks prior to that I had been feeling really bad. I travel some for work and I was scared to death to drive. During one trip, I even had to pull over multiple times due to the overwhelming urge to vomit (this was the week after removal). I remember that travel day vividly--I was praying the entire time that God take this sickness from my body and I spent the entire trip speaking positive words over myself. Then all of a sudden I thought maybe I should take another pregnancy test. I grabbed one on the way home that day and took the test that evening---POSITIVE! I was absolutely confused. I had only had my Mirena out for about a week, there was no way I could have gotten pregnant. The more I thought about it I knew it had to have happened while it was still placed. I immediately called my ob/gyn the next day, they blew me off, so I called another office for their opinion. Needless to say they took care of me and I was lucky to have them. I had an ectopic pregnancy, due to becoming pregnant on the Mirena IUD--my surgery was in May 2013. I was lucky to have my tube saved--and my life, as I experienced no pain because of where the tissue was and it burst as they were beginning surgery (including a 5cm cyst on my ovary).

Following surgery I felt better but still not myself. I eventually started to feel worse again (never quite as bad, but just not right) with the lightheadedness, feeling faint, nausea, etc. I went back to my family doc and he ran more tests. A CT scan, haulter monitor, more bloodwork. Everything was normal. Then we checked out my gall bladder. The ultrasound was fine, but my ejection fraction was a little low. I was referred to a surgeon. I thought I finally had an answer--that my gall bladder just needed to be removed! The surgeon met with me and told me that yes it wasn't functioning at its best, but it wasn't low enough that he was convinced the gall bladder was what was causing the issues. He did give me some medicine for my nausea, which helped some. And I took it upon myself to change my diet until we figured it out. I was then referred to a GI specialist where they found bile backup in my stomach. I did drug therapy (2 meds, 3 times a day for 3 months). This did help ALOT. I was not nauseous ALL the time and could eat almost anything in limitation. Drug therapy ended in December 2013. I was still having some pretty serious anxiety issues, which I took medication for, but never really got it managed well. I was also still pretty tired, but had improved somewhat on the meds.

Right before Christmas I found out I am pregnant (thank God this drug didn't take that from me) there were some issues in the beginning, but all seems to be going well now with the baby. I was very sick and I still have nauseous days--of course it is now hard to dictate what is a pregnancy symptom and what is something else. Unfortunately I am still stuck with severe anxiety that seemed to come from nowhere--it is bad enough that I believe it is making me feel like I need to pass out (although I haven't) I don't want to drive, work, go to the store, shop, GO ANYWHERE. I am so totally lost as I've had the ectopic pregnancy and then the GI issues, but it still hasn't solved the major issue. I am only 26 years old. I already feel like I've lost a year of my life. I have a 3 year old son, a husband, and USED to have a life. I want my life back desperately and I want to be happy again. I do realize that people want to say "oh you're pregnant now, maybe you just don't feel good" but I've had these symptoms prior to pregnancy and I also was pregnant before....I had 10xs more energy. In fact I was a full time college student and waitressed the ENTIRE time I was pregnant with my son. I also still managed homework, getting assignments in early so I could graduate on time, and still running a household.

I do realize that some of these issues make my case a little complicated, but even the GI issues seem really odd to me. Did Mirena mess my body up that badly? Does anyone have suggestions about managing the anxiety? Especially while pregnant? Has anyone found a doctor or specialist that could help them? Is there anyway to link ANY of this to Mirena--if it is, in fact causing it?

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