My Mirena nightmare...

Hello everyone. I just wanted to share my Mirena horror story with the group. I realize some women might think this is a wonderful form of birth control but it was a nightmare for me. I just wanted to post my story so any woman that is thinking about Mirena can make an informed decision.

In July of 2005, my doctor inserted my Mirena IUD. I have always wanted a tubal ligation but my doctor would not perform the procedure (even though I have known for YEARS that I never wanted to have children). He recommended the Mirena IUD for me instead. He advised that I was a good candidate for it since I wanted long term birth control and I no longer wanted to be on Depo-Provera (which I had been on since 1997).

Prior to the insertion, he advised that I might feel ‘mild discomfort’ since I have never had a child and the opening to my uterus would therefore be smaller. The IUD insertion was the most painful experience of my life and I was offered no pain medications. I was only advised to take Advil when I got home. The nurse that was in the procedure room with me held my hand and wiped my brow with a cold cloth and offered me juice and ibuprofen when the procedure was completed. While I was lying on the table after the insertion I asked her if every insertion was this painful. She said she had the same IUD and her insertion was not bad at all but also said she had children and that might be the reason that hers was less painful. My ex drove me to and from my insertion appointment and can testify to how painful it was for me. I cried the entire way home and after he helped me get into our apartment and in bed, all I could do was lie there and cry because it hurt SO badly. The only pain medication I had was Advil and it did nothing to help me.

I had a follow-up visit 3 months later to check the IUD position. I advised my doctor that I could not feel the strings and that the patient information on the Mirena web site said I should be able to feel the strings and to notify my doctor if I could not. He advised that I shouldn’t be able to feel the strings and everything was fine. He performed an ultrasound and said everything was okay and the IUD was positioned correctly. I asked him again about the strings and he said I should not be able to feel them and assured me that everything was okay.

Issues I had since the insertion of my IUD in 2005 were been periodic cramping, pain in my back, weight gain, hair loss, breast tenderness, mood swings, numbness in my feet and a constant feeling of fatigue (even when I get 8-10 hours of sleep). I assumed that my doctor knew what was best for me and the issues I was having would go away in time. I didn’t think a doctor would prescribe and insert something into my body unless it was safe for me so I trusted my doctor. I never got to read the patient pamphlet and had to resort to reading a ‘bare-bones’ version on the Mirena web site which makes it appear that Mirena is a totally safe birth control method. I got the Mirena IUD from the Kaiser pharmacy about two weeks before actual insertion but I was hesitant to open the sealed box. I thought that it might not be sterile if I removed the shrink wrap and opened the box. I left the box sealed and closed until I took it to my insertion appointment. Then my doctor opened the box and did not let me look over the leaflets or advise me of any possible side effects. I did sign a paper that I believed was just giving consent for the insertion. I am unsure now of exactly what I signed because my doctor was rushing me. I was nervous and scared and just wanted to get the procedure over with. Looking at the physician and patient information I found online recently, I know that I never saw any of those pamphlets before the insertion. The physician’s pamphlet gives more information on possible side effects than the patient pamphlet does. It was never explained to me that I was running a risk of ovarian cysts, mood swings, etc. The patient pamphlet I found online recently says any side effects are temporary and would eventually go away. My side effects never went away. Mirena patient information I found online stated that the Mirena IUD was not recommended for women who had never had children. My doctor knew I had never had children and didn’t want any but he recommended this IUD anyway.

Starting around December 7, 2006, I felt a constant pain in my right ovary area. The pain was constant and occasionally I felt sharp stabs of pain (2-3 times an hour). The sharp stabs of pain usually lasted 5-10 minutes and then subside. This pain was worse when walking. I also would occasionally bleed. The bleeding was not heavy and it happened sporadically but my condition was more painful when bleeding was present. I also had a constant throbbing pain in my uterus area. This pain was worse when using the bathroom or just trying to walk around.

I went into a Depression which got worse and worse. I thought it might go away on it’s own but it got worse every day. My family and friends commented that I was not 'myself' anymore. My mood swings are radical and overwhelming.

I then decided to see another doctor and I made an appointment. He suggested a shot of Lupron to possibly help with my pain and 'cysts'. He never really thought it was the IUD and assumed it was ovarian cysts. My doctor was hoping that the Lupron would stop my ovulation and make the pain stop. I was given a one month dose and it didn't work at all. Lupron has MANY side effects. I got hot flashes, night sweats, radical mood swings, my breasts decreased in size and I often had major headaches.

On a Saturday in December, 2006, I went to the Kaiser Permanente Urgent Care Center because my pains were worse and I could barely move. The doctors there told me it was likely that one of my 'cysts' had ruptured. They did no ultrasound or any type of test other than a urine and blood test. They said they did not want to do another ultrasound because I had had one recently and they saw no need to do one. They gave me a prescriiption for pain medicine and sent me home.

On January 3, 2007, my new doctor scheduled a CT scan. I had the scan done and was allowed to go home. I talked to my doctor two days later and he said he had seen the CT scan images and it appeared that my IUD was partially imbedded in my uterus and could have possibly punctured my uterus. He said that this was not visible during ultrasounds and that CT scans are generally more accurate and show more details than an ultrasound. He suggested removal of my IUD and said he also wanted to perform a laparoscopy to see exactly what was happening and rule out other medical issues (such as endometriosis). We agreed that the IUD would be removed, he would perform a tubal ligation (FINALLY!), any cysts would be removed and he would do an exploratory laparoscopy to see if there were other medical issues present.

I received surgery and it was found that ovarian cysts were never the issue. My IUD had punctured my uterus in two places and it was unclear if this was happened at the time of insertion (which is my guess since it hurt SO BADLY!) or if it happened over a period of time. This means I never needed the Lupron shot at all. Which also means that if I had the CT Scan earlier than January 3rd, I could have had surgery sooner.

My doctor talked to my ex after the surgery. When I awoke in the recovery room, my doctor stopped by to tell me the surgery was successful and it was the IUD causing all the problems after all. My doctor gave color photos to my ex to show what had happened. You can see in the photos a lot of yellow mucous. This mucous was created by my body in an attempt to protect my other organs. My body had created the mucous and covered the parts of the IUD that were protruding in an attempt to protect me. My doctor removed the mucous and then you can see in the photos where the IUD was attempting to break free of my uterus in two places! It took my doctor three attempts to remove the IUD because it was so embedded. My doctor told my ex that he (my current doctor) and my previous doctor had ‘dropped the ball’ with my treatment.

If anyone would like to see pictures of what a uterus perforation due to a Mirena IUD looks like, please let me know. I don't want to post them here because they are pretty graphic and I don't want to upset anyone.

So all in all, I ended up getting a tubal ligation (which I had been trying to get for years). I'm glad I finally got my tubes tied but I curse the day I ever heard the word Mirena. It was a nightmare and this form of birth control should be taken off the market!

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