Here is my Mirena story—What I finally posted on forums when I was struggling to find answers. I posted this on October 15, 2010....
I'm finally writing all of this down because I know how desperately I've been looking for any sort of answer regarding what in the WORLD is happening to my body due to the Mirena. I apologize in advance for the long post, but I figure it may give some woman out there some information that she is searching for. If not, at least it is just one more post to show the world that we are not crazy here. We are very sick...and we are desperately trying to get better.
I was actually one of those women who had the Mirena put in after the birth of my first child and had no problems. I told everyone I knew how wonderful and convenient this form of birth control was. I used it, it worked, we decided to have another baby, I took it out, got pregnant the next cycle....everything seemed flawless. After the birth of my son, I had it inserted again at my 6 week post partum appointment. Within two months of insertion, my body started falling apart. Unfortunately, since I didn't have issues the first time, I didn't have it removed because I never made the connection to the Mirena until it was in for 17 months. That was when I started seeing thousands of posts of women who were suffering just like me...and reading their symptoms made me feel like I was reading my own journal. I literally cried when it hit me that the Mirena was the cause. Yes, I cried because I was angry--but I also cried because I finally felt like I had a real answer...a reason WHY I was falling apart. I finally knew that I wasn't just going crazy.
Here are my symptoms:
ANXIETY ATTACKS (I NEVER dealt with anxiety before, and suddenly I was dealing with them constantly--horrible ones that would literally take me to the ground)
LOWER BACK/HIP PAIN (I was going to the chiropractor twice a week and it didn't help at all)
BLURRY VISION (I have had it confirmed by my Optometrist that I have lost over 60% of my vision in my right eye in the past 12 months)
OVERALL "FOGGINESS" OF THE BRAIN--All the time. Feels like I'm half out of it and have to concentrate so hard on everything.
ABDOMINAL PAIN (I went in to my OB, and they found pockets of blood in my abdomen--they have since reabsorbed)
WEIRD "PATCHY" GOOSEBUMPS--This is a weird effect that I deal with multiple times per day. I get these weird patches of goose bumps...like in patterns on one arm, or only my right leg will be covered and not my left, etc. Only lasts for a few seconds, but happens constantly.
HEARTBEAT ISSUES--I've had to go have testing run because my heart rate starts jumping all over the place
FEELING LIKE I'M NOT GETTING IN ENOUGH OXYGEN WHEN I BREATHE--Sounds weird, but that is the only way that I can explain. I sometimes "huff" a lot to pull in more air.
WEAK HANDS--Out of nowhere, everything from my elbows down to my fingertips get so weak that I have to concentrate with everything I have to simply hold a glass or type a word correctly.
AWFUL MOOD SWINGS--I went from the most relaxed person who enjoyed being out at the park with my kids to a woman who was too overwhelmed to do ANYTHING. Doing laundry was too overwhelming. Taking my kids outside was too overwhelming. Taking a SHOWER--for goodness sakes--was sometimes too overwhelming. So, I became this "shell" of a woman who felt so sick and counted down the hours until I could just go to bed. I would yell at my daughter for stupid things. I knew it was me going overboard with my reaction, and yet I could do NOTHING to stop it.
EXTREME AND CONSTANT FATIGUE--I'm talking so tired all the time that daily life seemed almost impossible.
INSOMNIA--That's a strange one because, like I said, I had such awful fatigue that you would think that I would fall asleep at a moment's notice. Nope. Can't even tell you the last time I slept through the night without problems.
I went months not knowing what was wrong. I started off finding other "reasons":
"I have two kids three and under, and I'm just tired."
"My baby was born with a medical condition that we didn't know much about; he's in a lot of therapy...I'm just really stressed out."
"I'm getting my Master's degree now on top of everything. It's just a lot to handle."
Does this sound familiar, ladies?
BUT....as time went on, my side effects got worse and worse...and it seemed like one body system at a time was just shutting down....and I was POWERLESS to stop it. My body was shutting down...my mind was shutting down....my emotions were shutting down..... I felt it happening, and I was terrified because I had no idea why. Like most of you, I kept quiet about it for the first several months because I was EMBARRASSED. Who wants to admit out loud to your loved one--every day--that you are too overwhelmed to load the dishwasher, or you yelled at your three year old because she dropped her sippy cup on the floor, or you put your kids in front of the television for an hour so that you could go to the other room and cry for no apparent reason?
Or...even worse...who wants to have to say out loud that you are afraid that you are losing your mind? Yep....that was me. I sincerely thought that I was slowly going crazy, and I couldn't do anything about it. But, in true "woman of the household" fashion, I kept it in because to verbalize it made it true...and made me sound weak. THAT was unacceptable--and far too scary to do.
I was in a horrible place. I'm sure I sounded like a hypochondriac, I KNOW I had to seem like the world's laziest woman when my husband would come home and I had done hardly ANYTHING regarding the home. I KNEW how it looked.... I KNEW that I wanted to be better and do all of these things....but I also knew that I simply COULDN'T--and worse, I had no idea why.
Here is where I'm at now--I am almost three months post removal, and I've been to the doctor most recently to address the panic attacks and the weakness in my hands. He, of course, has referred me to a neurologist to rule out MS, ALS, etc.... After reading all of the other posts, I'm sure all tests will come back as normal (just as all my blood work has), but I haven't been to the neurologist yet. I'll let you know. He also gave me a bottle of 10 Xanax pills so that I can take one if I start having an attack. He thinks this could all be anxiety. I know differently. Not only have I never dealt with anxiety before this (and now it is almost debilitating at times), but my last attack hit me WHEN I WAS ASLEEP. That's right, I woke out of a dead sleep and couldn't breathe. Something is PHYSICALLY doing it to my body.
Just yesterday, I was at the doctor to demand that he check the silicone levels in my blood. I have seen far too many posts from women who are suffering from silicone poisoning because of the Mirena. When I requested the test, my doctor looked at me like I had three heads. "I've been a doctor for many years, and I've NEVER run a silicon test. This test is pointless." My response, "Well, now you have--and it isn't pointless to me."
He continued to talk to me about how it probably won't be covered by my insurance because it isn't part of his "treatment". Okay, fine. I'll figure it out. Run the test.
Then, he proceeded to say, "You know, even if you are right and it is silicone poisoning, there is nothing that you can do about it, so it seems unnecessary to do a test for something you can't change anyway. My answer, "Maybe I can't take any medicine for it...but I'll KNOW. I'll FINALLY have an answer to why I'm so sick. That is worth the WORLD to me at this point. I've been scrambling for answers for over a year, and if this blood test finally gives me the WHY that I've been searching for, it is worth it to me." (Plus, if there ever is a lawsuit...I want that level noted in my file).
By what I've learned so far, it looks like most of the women who share my same symptoms have any or all of the following things happen to their body:
1. Their body is thrown into Estrogen Dominance, complete loss or progesterone or some extreme hormonal imbalance. This device provided all of our progestin for us, so our estrogen kicked up to meet it. Then, the IUD was suddenly taken out, the estrogen is still pumping like mad, but our bodies haven't figured out how to start it's own progesterone again yet.
2. Silicone poisoning--Apparently, part of the IUD is a silicone compound. Yes, we were told that it couldn't enter our bloodstream. I don't buy it. I know a girl that had hers tested (She has even posted here I believe) whose silicone levels were three times over the abnormal limit. THREE TIMES.
3. If there was a malfunction of the device...especially a malfunction enough to have the silicone "holding cell" of the Mirena break apart and enter our bloodstreams, that--according to an Internal Medicine Specialist--means that the hormones that were in that cell all came out at once. That's right, ladies--that is FIVE YEARS worth of hormones that spilled into our bodies at one time. Knowing that, how could we NOT be on the edge of falling apart? Did you know that, when the Mirena is perfectly operational, that it put in our bodies the equivalent of TWO progestin pills A DAY????? (If I had known that, I never would have had it inserted in the first place) Yep, and that is when it was working CORRECTLY. Imagine now, FIVE YEARS of it spilling into our systems at once when it doesn't.
So, there is a possibility that, if the silicone tests come back positive, that we not only have five years worth of hormones in our system that our bodies are frantically trying to figure out how to deal with, but we also have our blood at a toxic level. Think about it. If something is wrong with your blood, OF COURSE your ENTIRE body will eventually be affected--your blood is pumping through all of it....your brain, your heart, your spine....
I am not a doctor. I don't claim to be. But, I've sure seen my share of them lately, and I've spent hours upon hours gaining information from other women who have gone or are going through the same suffering that we are now. They all seem to have the above issues in common, and that is why I think it is important to put them all together and post this. I'm trying to post something that was what I was looking for during one of my many desperate and fear-filled searches for possible answers. I'm not trying to give a diagnosis to anyone. I'm simply giving information for each woman to weigh against her own symptoms and decide what to do to start fighting for her life back. Think about what tests to run and go make it happen.
It angers me to think that the only reason I even changed from the pill to the Mirena was because I was a nursing mother, and my OB told me how much "safer" the Mirena was than the pill because it is localized to the uterus, and therefore, nothing entered the bloodstream or milk supply to the baby. What new mother wouldn't make that decision when told that it is the safer choice for her newborn? Most of the time now, though, I try to move past as much anger as I can that dwells on the past--because I can't go back and change what has happened to me. I am now trying to focus that energy on getting better. I have to admit, I have my strong days and my weak days....but I'm fighting.
Now that I am three months post removal, I'll try to explain where I'm at. The blurry vision and foggy brain are constant and consistent--even now. The anxiety attacks, back pain, and weak hands come and go and don't seem to follow any sort of pattern. However, I do notice a definite improvement on the amount of time I deal with a sore back. It used to be all the time. Now, I have good days and bad days. I definitely notice a VAST improvement in my mood. I'm so thankful to say that I am having some good days again--days where I find myself singing while I'm wiping the kitchen counter...days where I want to have a tea party with my kids. In that way, I feel like I am starting to get ME back...slowly, but she is in there, and I'm going to keep trying to get her out. One day is good...the next is bad...I never know. I may never be 100% again as far as my physical health--I simply don't know the answer to that yet. I do know this, though: I'm NOT going to stop fighting to get my life back.
Here's what I'm taking now: (To current blog readers--This is NOT the detox...this is what I was trying at that time....)
--I only take a Xanax if I need it. Anxiety is awful.
--I take a B Complex Vitamin every morning
--Evening Primrose Oil supplement daily
--One Biotin supplement daily (my hair never fell out like many of yours did, but it did get coarse and brittle...I thought it was our water softener for the longest time! :-)
--I also take a supplement (it's a powder that you mix as a tea) called "Natural Calm". It is a Calcium/Magnesium compound that I really believe is a large reason why my back pain is feeling so much better. It could also be helping with the anxiety according to the claims.
I'm also, depending on what the silicone test reveals, am planning on doing some sort of detox for my system. I have also found an herbalist (actually, my mother did) who has some herbal oil supplements of some sort that are supposedly supposed to help connect with any sort of petroleum-based toxin in the blood and help you excrete it. Worth a shot, right? If I'm still struggling, I'm evening considering trying acupuncture--seems like a lot of women out there got some relief from it. I'm just trying other things first since acupuncture is not covered my insurance and can tend to get expensive. However, I'm willing to try anything at this point. I even joked to my husband that I would wrap my head in a cow placenta for two weeks if it would give me my life back. ;-)
I also take an all natural herbal energy supplement (four per day) to help me out with my fatigue. It helps me out a lot.
I think that's it. I will keep you all updated on what I find out, and know that I am praying for ALL of you. I know, all too well, the hell that you are going through. I'm right there with you--but I'm going to beat this thing...and so are you.
Blessings to you all.
Well, there you go, everyone. That's my story. I'll be back with more of my past posts soon....