Mirena Has Destroyed My Daughter's Life!
Posted over a year ago
My 22 year old daughter had the Mirena IUD put in 2 years ago. In the last six months her health, which has always been very good, is now so bad she can barely function. The extreme leg/foot pain (breaking/burning sensations), numbness/tingling in ... more »
My 22 year old daughter had the Mirena IUD put in 2 years ago. In the last six months her health, which has always been very good, is now so bad she can barely function. The extreme leg/foot pain (breaking/burning sensations), numbness/tingling in arms/hands, back pain, severe bloating, hair loss, has pretty much taken her life away from her. For the last six month doctors have been trying to diagose her, thinking she had MS, or Guillian Berret, neuropathy, and varius other auto-immune disorders, but thankfully all tested negative. She has been in/out of the hospital and on every treatement and pain/medication you can imagine, none which alleviate this pain (morphine, dilaudid, fentynl, lortab, oxycodone, gabapentin). After her last 9 day stay in the hospital a pain Dr finally told us it 'could' be the Mirena and to have it removed. She had it removed Friday so only time will tell as to whether the nerve damage and other symptoms will improve. I am so upset to learn after everything she has been through, Spinal taps, Bone Marrow tests, MRI's, it is almost certainly the Mirena causing all of this. Her Gynocologist said she had another young patient she just removed the Mirena from with the exact symptoms. How can this still be on the market? If anyone else has experienced anything like this please reply/share. This ordeal has been a living nightmare every day. Thank you, HB
1205 - Dear Hailey, I would like to respond to the article you wrote in regards to your daughter, I must say that when handed this article from a girlfriend that I cried with sadness and also relief that there was someone else out there with my exact symptoms it was as though my own Mum had written this article, I too had had my mirena coil for now 2 1/2 years, in the past 4 months have suffered terribly with IBS, constant burning in arms, legs, back, feet and hands (and the list goes on) funny neurological sensations everywhere, nausea, headaches and incredible anxiety, I too was tested for all the things you daughter has been and thank god all were good, I asked various doctors if my mirena could have anything to do with it and the constant reply was NO, I never read too many articles as didnt want to be influenced in any way (I now wish I had) I decided that I wanted my mirena coil out and thankfully it was an easy process.It has now been 10 days and symptoms have decreased but are still there but with maybe not as much intensity, I guess that after being in your system for so long it will take a while to rid yourself of toxins, can you please advise as to how your daughter is improving as she seems to be ahead of me by about a week.Many thanks MJ
Hailey56 - Hi MJ I am so very sorry to hear that you going thru this too. It makes me sick what Mirena has done to so many women all over the world. My daughter Kate is still very sick, but 4 weeks post removal she is doing a little better at least, but has her good days and bad. Still more bad than good though unforunately. From reading other forums (curezone.com mirena side effects forum is the best I have found) it is going to be a long road but you will get better. Her symptoms initially started as allergic reactions to everything, environment/food/medications etc, she would break out in rashes, throat swelling and difficulty breathing and the reactions were often sudden and very severe. That was the beginning of the nightmare, now her worse/chronic symptoms are the migraines and nerve/neurological pain in her legs/feet/back/arms and sometimes hands. This has been going on for over 6 months. She decribes it at excruciating pain, burning, breaking, pins-n-needles and sometimes numbness/tingling. She also has fatique, severe hairloss, constant dizziness, brain fog/confusion, memory loss, nausea and general muscle weakness all over. Sometimes her whole body just aches and she has waves of pain that goes from her neck to her toes. Even the most powerful narcotics doesn't touch the pain. She can't understand how so much pain/discomfort can be inside one little body. Mirena is poison to a lot of women. Whether it's the hormones/silicone or what it does a lot of damage. It mimics so many other auto-immune diseases, it makes it very confusing to the medical profession, and they think you're crazy sometimes. We have a couple of good doctors that want to help but they just don't know how. We know that Mirena is the source of our HELL and have no doubt that it has caused all of her debilitating symptoms. I wish we could go back in time, and never get it. My understanding is that it takes time to get out of your system and for you to heal, but you will improve with time. You just have to go day by day and know that you are NOT ALONE. You are not crazy, you don't have MS or something worse, you have been poisoned by an IUD and you will heal over time. Please go to curezone, it has been a huge support for my daughter and myself and a great way to connect with others experiencing the same thing. If you haven't reported your side effects to Bayer/Mirena and the FDA please do so, this is crutial and they are required to report it to the FDA. This is happening to thousands of women and has got to stop. I wouldn't want even one person to have to go thru what my daugher has. The suffering is beyond words, but I know you understand. Please hang in there and get all the support you can and feel free to contact us anytime and post your progress/recovery. Best wishes and thanks for your post. My heart goes out to you, truly. Day by day and keep fighting. hailey56
1205 - Hi Hailey, I cant tell you how much I appreciate your reply and helpful knowledge, I had a bad day at work today with the nerve endings and burning legs and was starting to think maybe something has been missed, it has only been two weeks this friday since removal, your poor daughter sounds like she is a lot worse than me but luckily has your support. Hearing her time frame of things makes me feel somewhat relaxed. Havent come across the curezone site but will definately look into it, the symtoms being reported I must say that think I have all to some degree, My GP was very good when I handed her the printout of your story which my girlfriend thankfully insisted I read and yes when I go back to her for a checkup we are going to report it. I had read somewhere that you were able to check silicone levels in the blood and its amazing that no one carries out these tests any more (makes you wonder) I have never been on a forum of any type before but I must say how much I thank you and other people for posting these articles which bring such comfort, thoughts and prayers to Kate for a speedy recovery and hope that I am not far behind her, MJ
Hailey56 - Hi MJ, I just wanted to give you and update. My daughter has had the Mirena out almost five weeks now and in the last week she has starting feeling much much better. We can't believe it! We are finally starting to see a light at the end of the tunnel. She is still having moderate 'burning' sensations in her legs and feet, but they have decreased, as have the headaches. I can't tell you how much better she looks and feels right now, it's the first time she has felt somewhat 'normal' in over 6 months. We are hopeful she continues to improve, but the 1 month mark post Mirena removal seemed to really be huge, so hopefully for you too all good things are to come. Keep us posted and feel free to email. hailey_56@live.com
Hailey56 - I wanted to post an update on my daughter, after having the Mirena for 2 years, her health had deteriorated to the point she could not function, and her pain was severe. At 7 weeks post Mirena removal, she is almost back to normal. All symptoms have calmed down or stopped and she is feeling so much better. If that isn't proof that Mirena is the cause of a lot of these unexplained pain syndromes/auto-immune symptoms, hormonal problems, I don't know what does. All her tests were normal and we ruled out MS, Guiliian Barrat, Rheumatoid Arthritus, Lupus and everything else. The Mirena IS what made her so sick. Clearly it doesn't happen to everyone, but Mirena can be torture for some women, I just wish it didn't take us so long to figure it out. Dr's would say 'oh no the Mirena can't cause all this' but I am here to tell you it CAN and it DID. If you are starting to have tingling sensations in your hands/feet or problems with your immune system, body aches/pain, hair loss, headaches, vision problems, dizziness, don't wait and get it removed! The longer you have it the worse it gets for some women.
Jdalways - All I can say is thank you for this info. I have had the mirena 5 months and it's been a downward spiral. Had thyroid, anemia tests done due to the instant drop in energy. My symptoms have been lethargy, feel like I might be depressed, but have never been depressed in my life, acne, weight gain, bloated, headaches (never had those before either), blurred vision problems (w 20/20 eyesight) and my hairdresser just told me yesterday, I have 1/2 the hair I used to. I know this device has worked great for some... but when it's a bad reaction, it appears like it's a "debilitating bad reaction".
Hailey56 - Yes I agree, and unfortunately there are hundreds if not thousands of women that are having very severe and debilitating reactions from Mirena. It can start with fatigue, headaches, hairloss, vision issues, bloating, allergy reactions, etc.... but then if only get's worse over time. My daughter was in a wheelchair, and couldn't even walk for a period of time when it was it's worst, and prior to having it taken out. Please have it taken out asap and find another form of BC, coming from a Mom I'm telling you, it's just not worth it. I look back now at what my daughter and our family went thru because of Mirena, and I still can't believe we survived it, it was horrific. 7 weeks post removal she is getting her life back and feeling a thousand times better and functioning like a normal/healthy 22 year old should. I wish we had looked on the internet when she first started getting sick, we went to the Mirena website only and looked a 'known side effects' and of course none of these things are listed there, go figure, even though we know now that it's happening, and to a lot of women. Doctors would say 'oh Mirena can't cause this, she has something else, no she shouldn't have it removed, etc' - but that just wasn't true. I wish someone would have told us early on what was going on so she didn't have to go thru all this. I would never wish this on my worst enemy! Good luck and run to your gynocologist, and don't let them talk you into keeping it, and ask them to report your symptoms/experiences to the FDA. Take care and glad this information helps.
Mirena Blues - Hi Hailey 56 - I am sooo very thankful I read your posts today. So sorry to hear about your daughter. I know to some extent how you all feel. It's AWFUL! I am exactly 1 week post mirena removal and I am a mess (emotionally and physically)! I had the mirena in for the 5 year period with occasional symptoms, mostly HEAVY anxiety, headaches and fatigue. Since August/September of this year, I have been having major hair loss, joint pains, headaches, heavy cramping, dizziness, numbness in fingertips and alot of lower back pain. Due to this, I have been to my PCP, OBGYN and Endocrinologist trying to figure out what is wrong with me in addition to my already existing anemia and hypo-thyroid battles. After much blood testing, I got a call from my OBGYN's office this afternoon telling me I need to follow up with a Rumatory Dr. because my ANA levels were elevated which could indicate lupus. In addition to the depression the mirena has caused, this made me feel even more depressed. I can't even imagine having another auto immune disorder. Thank God I found your article online and read it. I finally found someone who could write my exact feelings and thoughts. The mirena is the cause of all of this! I pray that my symptoms will go away with time too. I was so grateful to see the updates on your daughter and the positive news! I appreciate you putting this information out there and I am sure it will benefit many others as it did me. :)
Hotmomma05 - ...Im sorry to hear what everyone going thru...we can all go thru it together :( but this is horrible and we should work together to bring this horrible company & medicine and safe a lot of blind women who think its "just birth control"... I honestly loved my mirena until one day BOOM until one day I was on the bathroom floor with paramedics around me and I was waking up, not knowing what in the hell was going on!!!!! when I woke up I ws missing a tooth :( and all was chaos!!!! that was my first seizure EVER!!! and ofcourse all of the doctors dont want to admit its the mirena. Im now having seizures round my period time!!!! sounds hormonal to me...and im no doc and im no doc!! so i had the mirena removed and since then ive had seizures then..and WILL U FREAKIN BELIEVE THE DAMN DOC HAD THE NERVE TO TELL ME SHE THOUGHT THE SEIZURES WOULD STOP WHEN SHE TOOK OUT THE MIRENA.....it took every muscle in me to not CHOKE DAT BITCH!!! after she told me over & over it wasnt the mirena causin the seizure!!! :( iv found in my research that the drug LEVONORGESTREL which was in norplant was already sued for causing seizues a while ago!!!! why wasnt this made aware of?????????? I WOULDNT HAVE GOTTEN THIS DAMN BIRTH CONTROL!!! AND THATS A FACT
Xxx312 - I know how u all feel about this damn little thing :( ... I had my mirena for nearly 5 months and it did so much harm to my body :'((( ,I often cry ... I have lost more than 50% of my beutiful hair ,I was deeply depressed taht doctors prescribed me soothing agents, i could'nt sleep well at nights , used to go to toilet 5 to 7 times per night ,my vision sometimes doubled ... And all doctors kept telling its stress or i'm on a bad diet ,but not mirena . Silly ... until my mom told me that it can be only Mirena ,look on internet . And I looked ... O MY GOD !!! Reading all these stories made me sick ,because every word was about me :( ,I had the same symptoms ... I had my Mirena removed two days ago .... the next day the fog went off my eyes ,my deppression disappeared as I never have had it... Only my back still ackes time to time and my hair still falls out ,but I pray and believe it will soon stop . Be strong . And dont ignore your body signals ! MIRENA IS EVIL !
Jdalways - I had it removed 2 weeks ago, and although I wasn't expecting and overnight fix, I do feel better. More good days than bad. Looking forward to my first real cycle. Have had a mirena type cycle, with 1 day feeling just like I did on Mirena (achey, bloated, fatigued, headach, blurred vision), I look forward to my 1 day of PMS over that. I have to say, my blood pressure has gone down. 120/60 pre Mirena, 140/90 on Mirena (explains blurred vision) and am now at 140/70. This was the only concrete factor that made my OB finally say, let's get this thing out. For all the symptoms are individually mild, but all at once was dibilitating, for this normally healthy and active person. Good Luck all.
Steph82 - Hello. I came across this and thought I'd tell my story. I've had Mirena for almost two years now. In the begining, I had severe cramping and lower back pain that literally prevented me from turning over in bed. I felt like someone laid bricks on my back. The cramping stopped after a couple of weeks but the lower back pain is off and on. After 3 months of Mirena being placed, I was severely bloated. I thought it would eventually go away, but I still look 6 months pregnant. I have been to the er twice about it. The 1st time they asked me if I could be pregnant. I told them that I had a 3 month old at the time and there was no way that even if I was pregnant that I could possibly be this big. The nurse agreed with me and I took a preg test anyway-neg. They told me I was just constipated. I went in again about 8 months later because the bloating was so severe in my stomach that it hurt. Same end results. I have also had difficulty breathing at times, my hands and feet are swollen when I get out of bed. I am always tired even with more than enough sleep. I get bad headaches, have anger issues, blurred vision, I have also had issues with loss of balance (once while holding my son). It's very scary. I have absolutely no interest in sex, none at all. It actually turns my stomach to think about having sex. (that isn't normal for me). I have a loss of appetite (probably due to the constant bloating). My hair falls out every day. When I brush it, when I wash it, and for no reason. My left arm hurts off and on and travels to my hand. I get severe boughts of depression and crying. I also have nightly low grade fevers. I decided to have Mirena placed to keep from getting pregnant. Not to feel like I'm slowly dying. I don't understand why so many of us are having these horrible, debilitating, problems and doctors blow it off and blame it on something else. I never had these problems before Mirena. My problem now, is that I have no insurance and no money to have it removed. I feel like I was tricked into believing this was a safe and easy form of birth control. It is the exact opposite. I have given up on going to the er because they wont listen to me. They say I have too many problems to deal with all at once. Tell me about it, I live with it every day. Mirena is by far, the worst choice I have ever made.
Xxx312 - "Levonorgestrel is pesticide ie., birth control pill and Mirena i.u.d implant. Also known as "organophosphate"; nerve agent. It was used during the holocaust under the name "Zyklon B" to exterminate Europeans; only in grosser production.
In 1980, a division of the notorious IG Farben chemical cartel, Hoechst AG (whom during WWII, assisted in eradicating 17 milliion people; regardless of there ethnic origin) had French scientist synthesize a molecule that chemically resembles the hormone progesterone. This molecule has a unique ability to bond the progesterone receptor cells and block their normal activity. The result of the molecule's activity is to block the hormone progesterone; vital to maintaining a pregnancy. The drug, better known as "Levonorgestrel" was not invented with the goal of terminating pregnancy, however by the time it was synthesized there was the demand for a new and simplified abortion technique."
Camdunson - THANK YOU SOOO MUCH, Haley56, for your updates!! I have been looking and looking for a timeline on how long it will be until I can hope to begin to feel better....
15 Replies