Saturday, January 22, 2011

Just some venting....

I honestly try to remain as positive as possible about this whole thing, and most of the time, I think I do a pretty good job at it.  Sometimes, though, I have to vent a bit....  Here are some of my thoughts right now on a day when I think back to my experience, and my heart hurts for all of us.

*  I'm glad to see that there are some class action lawsuits out there that some lawyers are trying to do for women who are suffering from the Mirena.  That's fantastic.  I have noticed, though, that all of them are geared towards the women who have had the IUD perforate the uterus, get PID, etc.  Again, I am so happy for those of you who will find legal help if that happened to you.  I'm blessed to say that my Mirena didn't perforate my uterus, so I can only imagine what that is like.  Go get 'em, ladies!

*  That being said, I'm anxious to see when the makers of the Mirena and/or some lawfirms are going to also deal with the HUGE amount of the rest of us who, even if we didn't have the physical perforation, had actual autoimmune/neurological/autonic/endocrine disease symptoms and worse due to the Mirena.  Look around, you guys....look at how many of us actually got to the point of testing for Multiple Sclerosis, Lupus, etc., because our right side went numb, or our hands stopped working, or our legs are too weak to walk.....  I sure didn't see anything about all of that in your little brochure.  What about the ladies who thought they were losing their minds?  The ladies who had to have spinal taps to test for MS?  Do you have any idea what it is like to be a woman in her twenties or thirties, be typing at your keyboard or holding a glass, and suddenly be completely unable to use your hands?  I sure do.  It's absolutely terrifying.  It's also just about the worst feeling in the world to be pacing downstairs in sobs while trying to figure out how you are going to start a conversation with your husband that explains how he might need to figure out what to do with the children for a while because you think you might need to admit yourself to a hospital....because you no longer have the strength to continue to fall apart.  I know that feeling, too.  I know what it feels like to be a multi-tasking, extroverted, and life-embracing mother working on a master's degree--a woman who not only enjoyed doing everything, but even excelled in that "pressure cooker" environment....who suddenly becomes an empty shell of a woman whose body was broken, whose mind and emotions were completely overwhelmed, and whose ability to simply leave the house was GONE--with no explanation nor strength to beat it.  These are not unintelligent or unstable women that you are dealing with here, Bayer.  We are strong and smart and hardworking....it's your little device that made us all so sick.   I know what it feels like to feel like you are trapped in your own body and mind and not be able to make it WORK.  I know what it feels like to be stuck in a nightmare even when you are wide awake.  Where is all of that in your pamphlet or on your commercials?

If I could speak to the makers of the Mirena, I would say this.....

Look, I understand that I don't mean anything to you.  I'm just some random woman out there who has suffered immensely at the hand of your product--a product that I used because it was lauded as a safer form of birth control for a nursing mother.  But you know what?  If the same thing that happened to me happened to YOUR sister, YOUR mother, or YOUR daughter....I have a feeling that you would fight with everything you had to make her better--because it would KILL you to see someone you love suffer so badly and so constantly.  I may not mean anything to you, but I do mean something to someone.  I AM someone's mother, someone's sister AND someone's daughter.  I MEAN SOMETHING.  I deserve a happy and healthy life just as much as the women in your life whom you love.  I only have one life down here, too.  I think that should matter to you if you are going to be in an industry that makes things like this.  Put your mother's face on that woman who is fighting desperately to get her life back.  If it was HER tear-soaked eyes that stared back at you, would YOU fight harder to make sure that change is made to help her?  Shame on you if you ignore us because dollars are more important.  I'm right here....and I had to fight with everything I had just so that I could be the wife, the daughter, the sister, and the MOTHER whom those I love deserve to have...and a woman that I DESERVE to be in the only life that I get.  There are so many of us out there, and that is the point of this blog.  If you won't try to help them....then I will...at least as much as I can.  Somebody has to try to help.  I pray that your heart changes.  You still have time to make this better, and it is time to be someone of whom you can be proud.

18 comments:

  1. Thank you for this post proud momma. 10 min ago I was crying because I'm tired of feeling sick most of the time, tired of not being able have a normal life, tired of having so many symptoms that scare me and also deprive me of having a normal life, like being a normal wife a normal mother, a normal person. I just want to be me again and enjoy what God has given me. I JUST WANT MY LIFE BACK. While reading this post I cry because you with your words spoke for many of us. I want to thank for that and because although you are doing much better, you are still around helping us and giving us words of encouragement. Thank you so much, God bless you.

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  2. You are welcome, Cynthia. I may be feeling better, but we are all still in this together. Big hugs to you during your healing. Are you planning on trying the detox? Please keep me updated on how you are. Prayers sent up for you today. You WILL beat this.

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  3. Proud Momma...thank you. Ever since my Mirena insertion, I've had growing symptoms. Now I am a crazy mess. My anxiety and depression are through the roof. I totally get why women just want to end it. The racing, scary thoughts are inescapable. I had no idea until I went to another website (where I found your blog link) that my arm tingling was from the Mirena, too! And I have ABD pan. I must be one of those strange women who likes having a period...not having it freaks me out. I'm scared of the pain of having it removed...but I've had two kiddos w/o birthing drugs, so I suppose I'll live through this, too. Not sure what I'll do for BC, but right now that's probably the least of my concerns. Thanks for listening and keeping your blog going with great info!

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  4. I had my mirena removed a year ago and I'm just feeling back to normal (and so thankful). I'm afraid of what could have happened to me if I had kept that in any longer!!

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  5. AScott--My advice is GET IT OUT! I can tell you from my experience, and I had it removed twice, that it doesn't feel anything like when it is put in (yee-ouch!). I didn't even feel it come out. Good luck...and keep me updated! --Proud Momma

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  6. I posted earlier, but I think I must have flaked when I hit post. Anyway, I did call this AM and have an appt the end of Feb to get it removed. I'm glad it's not horribly painful. Last time I was in, though, she couldn't feel my strings. U/S confirms it's in there. Hoping she doesn't have to do a lot of digging around to find it. Anyway, I will just hang on for the last month of this horrible thing. Thank you for all your support and information, Proud Momma!

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  7. Wow, I think I might have a lot of these symptoms from my Mirena. I have resently started having blurry vision, over night, I am very active, work full time, go to school part, involved in sports with my kids and play soccer but still look like I am 5 months prego, and I am not. I lost all my weight when I had my son but now have gained it back, not sleeping well at all, loss of hair. I have also had the mirena for 6 months and have a bad flow each month with lots of pain. Actually I say each month but it is more like twice a month, every 22 days. I feel like I am always on my period. I wanted to wait the recommended 6months but I don't think all this will get better. I just wish I was not so worn out all the time. I am usually a go, go, go person. I also feel like I am always in a bad mood, which before I was the googy type, hardly ever getting upset over anything, but still waiting and hoping it will get better

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  8. Well, I had the Mirena removed today. I'm so hopeful that things will get better. What you posted today, ProudMomma has been my experience as well. Thank you so much for reaching out.

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  9. THANK YOU THANK YOU THANK YOU!!!! IM NOT CRAZY AFTER ALL!!!

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  10. No, Anonymous, you are definitely NOT crazy! KEEP fighting for your health!!!! You'll get there!

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  11. Can someone please help me with Explaining the removal of my Mirena IUD. I want to get rid of this awful device but I curantly do not have medical insurance and called my OBGYN and she said it would cost around $400 to remove it! That is just crazy!!! Someone please help!!! Thank you!!!

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  12. Omgosh!! I am so greatful i found your post, i have been having all the problems am at the point to where i can no longer walk without ankle braces, negative for ms, lymedisease and out next attempt was a hospital 12 hours away! I have put out 5000.00 dollars so far with specialists, arranged who will be watching my children when i am unable. That is the most horrible thing to go through and im so relieved it could be as easy as removing my mirena. how long did it take you for all of the sensations and lack of movement to ceast? and for annonymous above, i would suggest coming up with that 400.oo vs trying to remove something your self that could cause further complications.

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  13. I am so happy to have found this post. My Mirena experience almost killed me. Approx 6 months after I got Mirena I was hospitalized for ITP. My platelet count was a 0. They immediately ran all sorts of tests and did a bone marrow aspiration. I was in and out . . . Mostly in .... Of the hospital for the next 9 months. I also have four children ages 1,3,4,7 at the time. I went through tons of meds and lord knows how many platelet and blood transfusions ..... To name some of them .... I started with prednisone at an extremely high dose which didn't work then whin- ro which also didn't work then we moved on to the more extensive meds chemo - 2 overall treatments which were horrible but the worst treatment by far was the 2 ivig treatments... I developed aseptic meningitis both times which is by far the most horrible experiences I've ever had. I still get migraines. The 2nd ivig treatment was to increase my platelet count to a level at which they could remove my spleen and they did Even with the meningitis. This was extremely hard for me. I was hospitalized for lengths is long as 15 days. After all that I still ended up with a 0 platelet count. They also thought I might have lupus due to an extremely high ANA. So we were down to very few remaining options all of which were either potentionally cancer causing or not on the market for more than 2 years. I opted for the new med called n-plate. It took 8 weeks for the n-plate to work durning that period my Mirena expelled itself from my body which immediately caused me to hemorrhage resulting in several blood transfusions and more meds to keep me from bleeding. The drs also put me on a shot to throw me into menopause so my bleeding might stop. I'm 29 so this was also not a good experience. When the n-plate finally kicked in full gear I developed numerous blood clots ... One in my kidney which was very painful, one in my lungs, several up and down my arms. After my IVs were changed from one arm to another I'd immediately develop another clot at he site. I was started on Heperan and warfarin which I was told to take for a year. Finally I went home. 2 weeks after I came home I went back to the ER and was told I had severe pleurisy and pheumonia. They admitted me. I had a rare pheumonia which was a result of all the immunosuppressive drugs I had been given. I was told I'd be at risk for anything and everything for the next 2 years. I was also told removing my spleen could cause me to be sick more often and to be cautious. The nplate I was put on for the chronic ITP was a lifelong commitment. 1 shot every week for the rest of my life. Once I started it I was told my body would be dependent on it for my platelets. I haven't had a shot in the last 3 months. I haven't needed it. My platelet count began to increase higher than it should be so my Dr weaned me off the shot completely. He was completely amazed. 6 months after the Mirena was expelled from my body I was almost normal other than loosing my spleen and constantly being sick now. I lost a year of my life, my husband and my very young children. I have scars up and down both arms from IV sites. Scars on my stomach from the surgery. I am only sharing my story because I want others to know it can and might happen again to another wife, mother, daughter, sister, or friend and trust me when I say IT IS NOT WORTH IT. I would have rather ended up pregnant again and again. I watched my children cry and beg for me when I was in the hospital. They were scared of the IVs and i also had a picc line at home.When I was home I was usually to sick to do anything. The side effects of the n- plate for me were not good. My e- mail address is michellesowell4@ yahoo.com if anyone would like to talk or share their story. My # is 404-446-5575

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    1. I am so greatful that you survived that whole awful ordeal to write about it. You jist saved my life. I have a 2 and a 4 yr old. I developed the phenomenon called 3rd trimester thrombocytopenia. I have had the mirena in for almost 3 yrs. This yr is the sickest i have been in my life. I work in the hospital and thought it was because of that,just figuring my immunity needed more boosting. This has been the hardest year to lose weight even after changing my diet and doing Shaun T work out. Its almost impossible not to lose weight with him. I did a blood test a month ago and my platelets were the lowest they have ever been. My gynecologist just thought i was developing ITPm I didnt understand why but figured it made sense because of my pregnancies. I was just contemplating taking high dose steriods or getting a platelet transfusion. But now it all makes sense why my health is starting to spiral out of control. As soon as i getting over this illness i will have this removed.
      Thank you again.
      From the islands.

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  14. I too have had severe problems since the removal of my Mirena. It began with leg pain, then blurry vision, numbness, ringing in my ears, buzzing in my feet...I guess you could say I have severe neuropathy and pain. I have been in misery for the past year and am still fighting. Like some of you I was tested for ms, lupus, etc. but with no findings. I decided to see a second neurolidist and he said I had antibodies in my blood that was attacking my nervous system. I did do a 10-day detox and felt a little better, but when I began to eat normally everything flared back up. I have found a doctor that is willing to listen to me to try to figure this out. I believe without a doubt that it is the Mirena that has caused me to lose my health and happiness. I'm so thankful for this blog because now I don't feel like I'm going crazy. I am going to try another detox soon that is 6 weeks long. I know it will be hard but I'm not giving up. I also wanted to ask if their is hope at the end of the tunnel. Eventually will my body return back to normal? Any comments would appreciated.

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    1. How is it going now Anonymous??
      I'm thinking of getting mine out next week...

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  15. I also have the mirena. I recently had blood work done and found out my platelets are high. Has anyone heard of it causing an increase in platelets?
    after reading this page I will be looking into getting it removed.

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    1. I found out that I had high platelets 5 months after getting the Mirena.

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