Thursday, February 23, 2012

Sound familiar???

The Signs and Symptoms of Silicone Immune Toxicity Syndrome:
    Peripheral Neuropathy (weakness, tingling, numbness in extremities, etc.)
    Central Neurotoxic Neuropathy (cognitive difficulties, memory problems, fogged thinking)
    Anxiety
    Cervical and axillary enlarged or painful lymph nodes
    Fibromyalgia (multiple tender areas)
    Myositis (painful inflamed muscles)
    Fatigue
    Night sweats
    Hair loss
    Abdominal pain
    Pulmonary hypersensitivity (shortness of breath, etc.)
    Emotional instability
    Joint and tendon pain
    Possible Chemical Sensitivities and/or Food and inhalant sensitivities
    Other autoimmune disorders, including rheumatoid arthritis and Sjogren’s syndrome, scleroderma, multiple sclerosis, etc.
In silicone immune toxicity syndrome, the body produces antibodies against the complex that forms when silicon attaches to protein molecules in various organs, resulting in an autoimmune response.

There you go.  I know this is one of the wonderful things that has happened to me because I tested positive for elevated silicon a full five months AFTER the Mirena was removed (I can't even imagine what the levels were when it was still in my body or soon after removal).  I also have almost all of these symptoms at various times...and that is 17 months after removal.

I have heard from a woman in Quebec who had her silicon level checked, and they called her in to redo it because they thought that something must have gone wrong with the test (because the number was so high).  The number should be between 0-10 to be in the normal range.  Hers--and yes she took the blood test again only to confirm it-- was 110.4!

Sad, sad, sad.  It's worth checking out, ladies.

83 comments:

  1. i have been researching all over the internet for an answer on what the hell is wrong with me. i have had this mirena in for 3 1/2 years and am finally getting it removed this friday! i have had the most horrible symptoms and nothing to blame them on. no answers, no hope. one day i thought what i had changed in the past few years, and the only thing i could come up with was mirena. my symptoms include: fatigue, headaches, HORRIBLE panic attacks (sometimes as long as 4 hours), depression, tinnitus, dizzy spells, joint pain, exhaustion, memory loss, very hard time concentrating on tasks....the list could go on, but i'm sure you are quite familiar with them all. just recently i have had a horrible head cold (another symptom...i feel like i am ALWAYS getting sick and have a cold). my jaw started really hurting yesterday, clicking and popping. it's difficult to eat. so, i googled mirena and jaw pain, and came across the silicone poisoning. who performs the tests? your gp? could my gyno do it on friday, or who would be someone to ask? i am just praying that this mirena is causing all of my issues because i just want to live my life. i am 30 years old with an almost 4 year old son and just want to give him all i can. thanks for writing this blog. and any advise on this would be much appreciated. thanks.

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    1. not sure if anyone is on the site anymore but hannah let me tell you i truly believe that mirena has causedme all of the same symptoms and more and i have had the mirena out for almost 3 years and still am having issues all of which no doctor has been able to explin and when i point the finger at mirena being the cause they all say that wouldn't be it. im going to the doctor next week and will insist that i have my silicine checked though after 3 years don't know if it will show anything or it this too will be another disappointment and the doctor telling me im crazy..however in recent months i have also found out that i am infertile although before the mirena i had already given birth to 2 kids but now im infertile with no known cause as of yet and still pain every month that ranges from..sevre anxiety attacks..headaches fatigue..pelvic pain..swollen lymph nodes with swelling as large as golf ball size and pain down legs..my mental state has become so instable since takng this mirena which was presented to be a miricle birthcontrol with no side effects and lasts for 5 years..has become the thing that i believe has reuined my life metally and physically.if you still read this post i am currently seeking legal advice and would love women to join together in the fight my email is msperry1984@yahoo.com

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  2. Hi Hannah....my goodness, your symptoms mirror what mine were. YES, girl...you are on the right track now. I definitely think that it is your Mirena that is making you so sick. Read through all of my entries and please let me know if there is anything else that I can answer for you. My GP was the one who ran my test, but I had to force him to do it (he thought it was silly, but I ended up being right). The code for the blood test is also in one of my entries. Yes, GET THAT THING OUT as quickly as you can. Then, to heal faster, you really need to do a detox to get all of that poison out. I would be happy to give you my doc's information if you can't find one there to do a natural detox. He is mailing it out to women everywhere. He has many wonderful videos that I have also posted here.

    Congratulations for figuring out what has made you so sick! That is the first step toward recovery! Know that I am here for you if you need anything! Just ask!

    Sarah--You are more than welcome! We are all in this together. :-) I'm not going anywhere.

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    1. Hi I also had the mirena in 1 year and three months and have the same tpye of symptoms. I just removed it about a week ago. i feel like going crazy no one want to believe you, or take you serious. please I would really appreciate it if you can pass on that Doctor information so I can start the detoxification process I want to thank you guys so much for behaving this blog for the support we're not alone there so many women suffering like we are we really need to stick together so that we can beat this thing and let people know as much as possible that this thing is dangerous deadly two minds and our bodies I had someone last week that told me they were thinking about getting the Mirena.i told them not get that thing in their body.

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    2. I had Mirena put in on March 31, 2017. Everything seemed normal for the first couple months, I had bleeding just like the side effect list stated. In early June, I started having severe tingling and numbness in both hands. It would get worse with activity like putting on makeup. Sometimes my right index finger would literally curve down and I had to stretch it to get it back to normal. This numbness and tingling would happen throughout the day, off and on, but it happened at least 5 times per day. About a week ago I was making dinner, with numb hands of course and then started feeling the numbness in my feet and two areas in my back. I also felt very dizzy and heard a whooshing sound in my ears. That night, I slept horribly, my heart was beating so fast all night it kept waking me up. I immediately called my gynecologist office the next day and let them know of my symptoms and that I had Mirena put in a few months ago. The on call doctor said that my symptoms were not from Mirena and to follow up with my Primary doctor. So, I went to my primary that same day. While at the appointment, as I was explaining my symptoms to the nurse practitioner, she mentioned that the looked in their database right before they saw me and did see 290 FDA recorded cases of numbness and tingling in hands and feet. So, at that appointment I decided along with the nurse practitioner that I would have Mirena removed by my gynecologist. She agreed that there was no harm in removing the device and if my symptoms continued we could do an EKG and bloodwork. She also gave me a stretching guide for carpel tunnel. I had the device removed at 11:30am on Wednesday July 12, 2017. The gynecologist was very interested in my symptoms and was very understanding. She did recommend Vitamin B, in case the numbness was from a vitamin deficienxy. From 7pm that night and even still at this point, 10pm on July 16th, I have zero numbness/tingling in my hands, feet, or back, no dizziness. All of the symptoms I had are gone. I am lucky this started happening so close to the time I had Mirena put in, otherwise I might have gone down the path of testing for all sorts of things I don't even have.

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    3. Is anyone on this site still? I have so many questions! I just had my mirena taken out yesterday

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    4. Hey Hailey- yup I’m still here! What’s going on? How can we help? -allie

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    5. Is there a way to messageprivately? ? I'm new to this but it's so great seeing I'm not alone! I replied further down!

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    6. I had mirena taken out on Aug 21, had it put in on July 24. Less than a month, I couldn't move my left arm and thought my head was going to explode from the headaches. My midwife talked condescending to me and told me it wasnt Mirena. As soon as she took it out,I could rotate my arm. Still having some stiffness occassionally as it's only been 3 days since I've had it removed. I'm taking probiotics, vitamin d, coconut oil, and am going to get niacin asap. I'm also drinking red raspberry leaf tea to help restore my uterus. I'm going all natural birth control with calculating ovulation and temperature. I officially will never trust pharmaceuticals for anything EVER!!!

      Specifically, I'm going to research detoxing silicone from the body. I'm breastfeeding so I'm worried if the mirena could pass through my milk?!?

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    7. Hi 'Proud Mama'!
      I have had awful symptoms for 5-6 months now, the worst being really awful jaw ache constantly! I had my mirena removed (thank god) about a week ago but haven't seen much improvement since, I am now desperate to detoxify from silicone as fast as I can. Do you have any detox tips or recommendations? I can't seem to find any doctors in the UK that know anything about this!

      Thank you so so so much!

      Tori

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  3. thanks for responding so quickly! i can't wait till tomorrow to get this thing out! i won't lie though. i am pretty nervous about the post removal side effects. i haven't had a period in 3 1/2 years, no cramps or anything. i used to get really bad cramps, so i'm not looking forward to that, but i am willing to deal with anything as long as this THING is out of me, and i can move on with my life.
    thank you again for keeping this blog. it is a great resource for all the women out there who are going through similar struggles. it validates our constant "insanity" and pushes us to continue to believe that we CAN and WILL get better. so, THANK YOU!

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  4. I read your blogs daily. It lets me know that their are other people suffering, just the way I have. I had mine removed 2 weeks ago after several health problems. I blamed mirena for each and every one of them, but my dr. Always insisted that mirena could have no connection to any of it. During mirena in just 9 months, I got ulcers, kidney stones, arthritis in my neck. I lost so much of my energy, which before I was very active. My immune system shut down, and I was getting sick all the time, and my abdomen was constantly hurting. So needless to say, I thought when I had it removed, I would be better..... Boy was I wrong! Immediately after removal I began to clot, just as I did after giving birth. Same feeling of my uterus contracting and everything. So I seen a gyno, and it eventually stopped. I suddenly went from an annoying tingly numbing sensation in my fingers and toes, to full body tingling, and actually feeling my blood pressure go up. I started to forget things I was doing and saying, and I became scared when I forgot a 20 minute ride home. Last night was my breaking point. After 5 days of what felt like a non stop anxiety attack, I told my boyfriend, " I can't live like this, I won't!" I thought I was going to ha e to admit myself into a behavioral health unit. I cried for hours. I had even had that talk with my 7 year old last week, that if mommy didn't wake up, go to te neighbors to get help. It's like you said in a blog.... I can actually feel myself dying. I left the dr. That told me it was anxiety and hormones over and over. This new dr. Did several tests today... Hormones, adrenal gland, you name it. He couldn't do the silicone test, but after 3 referrals, I got that done too. I'm just thankful I found a dr. Who is finally listening to me when I say, this is past being hormonal and anxious. I have been sick ever since I had it put in. I about let it take over my life. I'm just thankful I had your blogs to come to. It makes me furious they allow this thing to be put inside of women. Something needs to be done.

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    1. I am so happy that you found someone to test you and try to help you! PLEASE come back on here and let us know what you find out! Trust me, I know that feeling that you were going to have to admit yourself to a behavioral health hospital. I remember feeling that exact same way...trying to figure out what my husband was going to do without me here with the kids, etc. It was terrifying. What I can tell you is that the crushing anxiety will go away. It takes a long time (at least it did for me), but it will get better, Just keep fighting. You are doing GREAT!!! Let me know what your tests show, please!

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    2. Ladies, make sure you make a report to the FDA! There are law firms doing class action suits against Bayer, contact them!!!

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  5. Bonjour, je voudrais égalemnt faire le test pour voir mon taux de silicone dans le sang car j'ai mit le miréna pendant 3 ans ensuite 4 ans car entre temps je suis tombée enceinte et j'ai des symptomes d'empoisoinement au silicone, je dois faire une recherche de silicone ou silicium. merci

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    1. Just wondering has anyone developed a lump in their throat? A week before my first major in the middle of the night Anxiety attack (that I had never had before) I developed a feeling of a lump in my throat that hasn't gone away. I also have had and continue to have all the same symptoms as you all but I haven't read anyone complaining about an annoying lump in their throat so just curious. Please let me know if anyone reading this has this symptom.....I am praying for all of you, God Bless!

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    2. I have Mirena and have had a lump on the right side of my throat. It seems to change sizes and hurt sometimes but mostly doesn't hurt. where is your lump? I went to an ENT and she looked down my throat and didn't see anything... and i have about 20 other symptoms :(

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  6. Hello everyone I pray u all feel and get better I have been experiencing the same symptoms u all have anxiety/panic attacks and fatiguing. But I wanted to know have any of you experienced partial seizures as well b/c after 6 months of use I started having this condition, and if any of u did please inform me how ur getting through it or how u got over it and no i never had seizures and nobody in my family either. I pray and cry every nite I get my old body back, but I do pray that u all have a good day, week, and year good luck to u all : -)

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    1. I never had seizures, but I remember reading posts from women who did on www.curezone.com. Go to that website, type in "Mirena side effects" and you will see that there is a forum there called the Mirena Side Effects forum. When there, type "Mirena and Seizures" in the search line, and you should be directed to all of the posts that were written by women who did. I hope that you find some help! Let me know!
      I wish I could help more!

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    2. I did check out curezone.com and found some very interesting info. Thank you. But. I have neen taking women multivitamins and that has been helping e with majority of my symptoms accept for these aggravating seizures I pray these go away. But thank you for the website.

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    3. I just wanted to briefly share that I believe I have been suffering from seizures due to the mirena Iud. I had my first Iud inserted in Dec 2007. I accidentally pulled that out about dec 2009 and had a new one inserted in jan 2010. I had a grand mal seizure in my sleep in March 2010. I started have what I refer to as episodes of confusion throughout the year and 2011. I was put on seizure meds in September 2011 due to the episodes. This seemed to stop everything but then I had a grand mal dec 2011 and a few more grand mals as well as break through episodes. I went off the meds 6/28 because I believed that was causing me to have grand mal seizures. I went back to having episodes and have been under the care of a neurologist although I am not taking seizure medication. I had a grand mal seizure on 1/5/13 in my sleep. Had 4 episodes that month and a panic attack. I had a episode on 2/6/2013 and had my iud removed 2/7/2013 as of today I have not had any episodes since having it removed. I haven't gone this long without one since December of 2012. I am hopeful that it was the mirena and I hope my story will help others.

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    4. I am having seizures I think are related to the mirena please feel free to contact me I would like to band together katie.rose.xx@outlook.com

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  7. Hi Ladies,

    Thank you all for sharing your stories. I have experienced the same with Mirena. As soon as the general practitioner suggested that i could have RA, I started to research on how i could reduce the symptoms and found that the blood type diet helped me a lot. As a O+ blood group, I found that wheat was my enemy and as soon as i eliminated it from my diet, i felt much better. This was still before I could see a Rheumatologist. When I saw the Rheumatologist, i had already minimal symptoms. As soon as i googled and found your stories, I made an appointment to have the Mirena removed.I have been on a detox program trying to minimise the sysmptoms. While I am not yet sysmptom free, i am also not taking anything for the pain as the pain is very minimal and I believe I am on my way to total recovery. I will not accept anything less. All the best to you all!

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  8. http://merinaseizure.blogspot.co.uk

    see my story...

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    1. I just wanted to briefly share that I believe I have been suffering from seizures due to the mirena Iud. I had my first Iud inserted in Dec 2007. I accidentally pulled that out about dec 2009 and had a new one inserted in jan 2010. I had a grand mal seizure in my sleep in March 2010. I started have what I refer to as episodes of confusion throughout the year and 2011. I was put on seizure meds in September 2011 due to the episodes. This seemed to stop everything but then I had a grand mal dec 2011 and a few more grand mals as well as breakthrough episodes. I went off the meds 6/28 because I believed that was causing me to have grand mal seizures. I went back to having episodes and have been under the care of a neurologist although I am not taking seizure medication. I had a grand mal seizure on 1/5/13 in my sleep. Had 4 episodes that month and a panic attack. I had a episode on 2/6/2013 and had my iud removed 2/7/2013. I had 2 grand mal seizures on 2/20 and my first period since the Mirena was removed on 2/22/2013. I am hopeful that it was the mirena and I hope my story will help others.

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  9. Anyone experience earaches and jaw pain due to something like infected salivary glands or lymph nodes? I've had a reoccurance 6 times since I got my mirena 5 months ago, they treated me each time with antibiotics, but it never seemed to cure it 100% and now the antibiotics arent working. they're sending me for a CAT scan and I have an appointment with the dentist to have a xray to make sure it's not an abscessed tooth. but it started right after my mirena was put in and that seems too coincidental.

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    1. Yes, I have had chronic ear aches for over a year. Just had the mirena taken out as a result. I found it on one website and another woman complained of same. Have had a nasal drip for the whole year, too. Will have to let you know if that fixes things. At first my doctor told me she didn't agree with me,but google progesterone and it says it right there, plain as day.

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  10. I found a law firm that is interested in hearing about Mirena silicone toxicity/ autoimmune disorders.Can you PLEASE contact me so you can tell them your story?

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    1. Hi Stephanie,
      I'm very interested in contacting a law firm. I'm waiting on getting my Silicone blood test results back and had my IUD removed last week. I am currently unable to work due to Severely painful Peripheral Neuropathy (autonomic and sensory nerves). Please let me know how I can contact you.

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    2. hi
      I had the marina in for 2yrs 2months and had hell with it. moody but sharp stabbing pains in my tummy thought no more of it. towards the end of the 2yrs my pains in my tummy got worse also I had this pain in my jaw which hurt when I eat I was constantly getting . my tummy was swollen and so was my glands in neck and groin I felt like I was dying. I came across the marina coil problems and chose to have the thing removed I was put on a course of antibiotics for pid. and I had one day of feeling great that night my neck hurt and my swollen tummy got worse I lost a lot of blood and huge clots. I went back to the doc and had a scan which came back clear which I don't understand as the man who scanned me asked if I had children which I said yes four, he then said im pleased you have your results will come back in a week and the doctor will tell you what treatment you will need I hope everything works out for you . the next day I was back up the docs with bad pains neck hurting and aching all over. I had a ca125 test which was clear but showed up my liver. I was put on another cause of antibiotics for pid which according to the scan I don't have. now im depressed and aching all over still my neck is so painful and it goes all the way down my back to my legs I have tingling in my fingers from time to time I have a list of symptoms which go on and on. I hate feeling this way and would love to have a lawyer for this.

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  11. Hi all, I had my mirena removed last January, after having it for almost 5 years, where I started to experience migranes and period cramps throught the whole time where I never had that before....
    It took me about 2 months to get my first period. And it was HELL it woke me out of a sound sleep! The next 2 months was barely nothing. Then regular.
    August comes, no period, September comes no period.. I called the dr, ran blood work, your not pregnant, your fine it's probably stress. If you don't get your period in October I'll write you a script and it'll force you to have a period. Well I waited another week still no period I call and I ended up getting a period for 2 days.
    Now it's November. NO period AGAIN! I see another dr this time and she tested my thyroid and hormone levels and did an ultra sound. I go today to find out my results... It's my adrenal gland! Now I have to go for more tests, and see a specialist.. And to boot was told, it's more than likely I will never have another child as I can no longer produce hormones. I am 25 with a 5 year old child. I am beyond exhausted, I have constant migranes, I'm constantly bloated, my entire body aches. I am extremely crampy, and moody. I have never had anxiety but good lord! I have anxiety about EVERYTHING I hve no energy... Any one else have these symptoms?

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  12. Not sure if anyone is on here anymore. I was tested last week for silicon toxicity and haven't got the results back yet. I have had it out since the end of September and I'm having lots of symptoms. It's started with a racing heart then went to memory loss foggy thinking bad headaches. Shaking severe joint and muscle pain and eyes sensitive to the sun. I have seen my regular dr, ob cardiologist and a neurologist. Been tested for ms even. Now they want me to see a rheumatologist. I'm also having numbness in hands feet face and even my tongue. And this burning sensation. Does this sound like it'd from the mirena? How long does this last?

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    1. Hi, I have experienced some of those symptoms. I really think Mirena should be discontinued! Can you tell me where you received your silicone toxicity test? I've been looking for a place that does the test and can't find anything. Please let me know!

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  13. Hi, I'm really struggling at the moment. I had my mirena fitted in September 2012 and once it had settled down I was really pleased with it. Since last summer I have been feeling very poorly. I have chest pains and palpitations, headaches, ringing in my ears, a constant pain in my right leg, shooting pains around my body and a burning feeling in my arms. I also have a shortness of breath and feeling exhausted all the time. I am 30 with a three year old son and a full time job. I sometimes wonder how I will get through each day. I have even had panic attacks, which is a first for me, as I am so scared that there is something seriously wrong with me. The dr has done blood tests and I have had a heart monitor but nothing has shown up so far. I have requested that my mirena is removed and the dr tried on Monday but the strings are missing and now I am waiting for a referral to the hospital to have it removed. I want this thing out now and am desperate to get my life back. From reading this I feel like there are other people who understand what this is like and hope you all get a resolution soon. Jeanette x

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    1. I had a constant dull ear ache, nasal drip,and shortness of breath. Just had the mirena taken out. My doctor thought I was crazy at first and then she must have googled progestone because those symptons are listed there.

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  14. I am 3 1/2 years after removal. I had silicone poisoning from Mirena and so many symptoms and problems they are too long to list. I also am a Coeliac because of Mirena. It took me a good 10 months to start feeling a bit better after removal. And a good year and a half to feel back to 90%. I can safely say now I feel pretty damn good. I have a few twinges and things occassionally but all manageable. Of course, I will be a Coealic for life, but I have learnt to live with that now and accept it. I believe I still have small traces of silicone left in my system but am not going to be tested again, it's not worth the angst when I feel pretty good. I cannot stress how much giving up alcohol and caffeine when you are recovering from Mirena is. Drink herbal teas. I found chamomile very helpful. Lavender became my best friend, I used lavender oil to clean my floors and bathrooms etc, the smell is wonderful and very beneficial. I used lavender under my nose and on my wrists to help me sleep and relax. I ate healthy whole foods and drank aloe vera juice every morning. I used evening primrose oil tablets, magnesium, calcium and D, taken twice a day without fail. Even though I felt horrible, I went for walks whenever I could. I had baths with epsom salts (magnesium) to ease the aches and pains. I used St Johns Wort tablets when I needed them for the anxiety. Ladies, it does get better - just be patient. Good luck and blessings to each and every one of you xxx

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    1. Thank you for giving suggestions and some hope. I am just starting my research and journey. There should be so much more information on this from the medical community.

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    2. Thank you! You just gave me hope!!! I had mine 2 mirenas... (full 5 yrs then remove and another placed )... I'm sure it's gonna take a long time to get back to me but I'm 7 mths free...praying for good health for us all!!!

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  15. Thanks so much for these recent posts. I am 4 months post removal. There are good days in with the bad. Like you said, I guess I just have to be patient. Thanks for the advice on caffeine and alcohol. I really do miss my starbucks but realized pretty quickly I could not drink coffee. I have been taking magnesium, calcium and Vit D. Will continue to do that and just pray that all the anxiety, tingling in hands and face, ringing in ears, muscle twitches, lump in throat and internal trembling will eventually go away. Thanks again.

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    1. Hi, the more I read the more I wish I had stuck to my guns in the first place! I had a mirena fitted after a high cell change left me unable to use the good old diaphragm I had been using for years. I went off the pill after years of trouble, trying one then another. I felt the best I had in years without any hormonal contraception! But my Obst. said this was a good reliable contraception at my 'age' (I was just over 42 when I had it fitted). My friends with the mirena had all had good experiences - why not?
      It never settled, spotting/bleeding - I still got a period (which he said I would). I was already oestrogen dominant - stupid me thought that the levonogestrel would HELP my progesterone levels! Whenever I saw my Obst or GP they both would say "oh that is odd......never heard of that happening before?' and that was that. I have had trouble loosing weight for years (the ED I guess), I cant say I put on weight with mirena but I certainly couldnt loose any despite walking 4 klms a day! So finally nearly 5 weeks ago, after spotting/bleeding for 35 days I had had enough, I had it taken out. The relief I felt (probably mental) was immediate......then comes the fallout. I have been bleeding since the removal, I have read this is normal (not that the Gp thinks that, she would have me lined up for a hysterectomy if I went back to her now) I am confident that this is my body's reaction to the removal, I am hoping to god it stops soon. My skin is alot better, I still have the chronic joint pain, and fatigue. I am wondering about the silicone now so I might look at some testing.
      I cant believe the stories I am reading about this THING - I honestly thought I was getting dementia my brain is so wacked out, blurry vision, the worst thing is I sound like the worst kind of hypercondriach! (sp) My husband has been fabulous but I know he thinks I am imagining alot of this. Sorry for ranting on, all the little bits you read and they connect to this IUD. Thanks for listening x

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    3. When you said
      "I really do miss my starbucks but realized pretty quickly I could not drink coffee. I have been taking magnesium, calcium and Vit D. Will continue to do that and just pray that all the anxiety, tingling in hands and face, ringing in ears, muscle twitches, lump in throat and internal trembling will eventually go away."

      OMG all those symptoms are what I have been experiancing...ugh I am so glad to know I am not going crazy!!!!!!

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    4. Hi me too! I have tingling on only the left side of my face. Did yours ever go away?? I'm about 5 months post removal. This symptom came about after I had it removed. Recently did a hormone test and surprisingly my progesterone was normal but my estrogen is high. Any help and prays are greatly appreciated.

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  16. Hi,
    I just starting looking at Mirena and Silicone Toxcity and was astonished at the findings. There are so many women with symptoms like mine! I had Mirena put in 6 months ago. In the last 5 months I haven't felt like myself at all. I started having tingling and numbness in my feet. Then it went to my hands. I have muscle cramps, feel weak, short term memory loss, foggy head and anxiety. I have been recently diagnosed with neuropathy!! I was healthy before all this. I am so confused. I am wondering if you know where I can get a silicone blood test as of today? Also, is there a doctor that specializes in this? I am having a lot of trouble finding information and I'm so overwhelmed. Thought I'd ask someone who has experience with the subject. Thank you.

    Jenn

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  17. I went through 5 years of hell. Wasn't till nearly the 5 year mark that I realized what the cause was. The Mirena!! and only because other women started sharing their stories online. I started having problems probably a few months after insertion then over a 5 year period I had more problems that just escalated. These are some of my symptoms. Memory loss, brain fog (I likened it to mental dyslexia, words were there but I couldn't put them into a sentence), extreme fatigue, mood swings, light sensitivity, horrible sores, massive hair loss, lots of grey hair, anxiety, rashes, cramps, discharge and horrible odour, eyes felt like they were covered in a film which made it hard to see, very very severe depression wanted to kill myself. That's the shortened list. My doctor gave me pills for depression, told me not to touch the sores (I didn't they were too sore and very embarrassing) took my money and that was it. I knew there was something seriously wrong with me, we know our own bodies but who wants to hear it after 5 years of constantly been sick. After a while people stop listening, think here we go again, she doesn't look sick. I had good days but I had way more bad days. I was very active and sociable but became a hermit. I started looking on the internet and thought it might be mold or mites or chemtrails or maybe it was just all in my head. I tried all natural detoxing, baths, creams, chlorella, bentonite clay. These would work for a short while but then everything would come back. I'd get my hopes up then be down right back where I started. Soon I lost faith in everything. When I came across the Mirena and Silicone Toxicity Poisoning I didn't get too excited, after all wouldn't we know about this before and how can that little thing cause all this. After reading more and more about it and looking back to when my problems started.....it hit me finally. I went to my doctor and asked for it to be removed, she said.....get this......"I don't think it's the Mirena and I can't see it benefiting you by removing it". I left determined to remove it myself since they said when it was put in that they just pull the string to remove. I sat in my bath for over an hour trying to get that thing out. Wasn't even a month and my symptoms started fading. 5 months and I was nearly 100% better. I continued to have detox baths and drink chlorella, trace minerals, bentonite clay and Diatomaceous Earth. The reason why these things only worked for a short time before was I still had the Mirena in but now that it wasn't the results were so much better and I believe they helped with the crash and healing faster. I can't use anything with silicone (which also goes by other names too so you have to look out for that on the packaging) or I have an instant reaction and get sores or rashes. I'm 40 years old and should have been enjoying the best times of my life. Instead I went through the Mirena Hell.

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    1. Hey, what is a detox bath!! I have allll your symptoms as well!

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    2. Did u find out what a detox is for this iud I need to do it too but I first need to have it removed

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    3. OMG, I wrote a reply earlier - I just found your post! I can relate to everything! Are you still posting - how is your recovery?

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  18. This is clearly different for everyone. I've had one for 10 years and have never had any problems. I think it's the best thing ever.

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  19. Can I have this tat done in the uk? I'm at my wits end just come out of a mental health unit as I've been so depressed and I can't deal with being I'll all the time and so chronically tired is there a specialist that would deal with all this? Could someone email me? Katieslittleuniqueboutique@yahoo.co.uk would be eternally grateful xxx

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  20. Meant test not tat lol, I've been researching as began to think I may have ME but came across this ad it's clicked that my health has gone down hill since last June when I had te mirena fitted. I can barely function with the chronic tiredness, I'm in antibiotics every 4 weeks (if. I'm lucky to make it that long) no one understands how I feel and I've started to think I'm going crazy :(

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  21. I've had it for 5 years and in September plan to have it removed & another inserted. Before Mirena, I had debilitating cramps with my period that would often cause me to faint and land me in the emergency room, so it's been wonderful not to have to worry about having a period. However, everyone's bad experiences have me scared to continue with a new Mirena because maybe the newer ones have problems. I have had some numbness in my feet & hands as of late (when I'm laying down), but that's only in the last month or two & I'm nearing the 5 year mark. And I've had to be on Mucinex almost consistently since about a month after insertion but I never thought that could be related.

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    1. Hi, I recently removed my mirena when my feet and legs started going numb. This would soon turn into numbness present mainly when i would lay down as well. I'm about 2 weeks post removal and I'm still experiencing numbness, mainly in my right thigh and buttock. I know you made this post years back, but If you happen to see this I'm curious to how your symptoms progressed. Thank you! -Shay

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  22. I only had it in for about 2 weeks and I went nuts. Perfectly healthy to constant jitters and at night like clockwork my heart would start racing, my thoughts went negative/crazy, etc. Hormone tests all normal. Blood tests normal. I've finally demanded a silicone test (Yes, they argued.)....I'm interested why the severe panic episodes occur at the same time every single night. I think it was 4-5 days after I had it inserted that I had the very 1st horrendous one. I have NEVER EVER EVER had anxiety in the past let alone an attack like that. I seriously (&my husband) thought I was having a heart attack.

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  23. I have had these strange unexplained symptoms and have had the mirena for 5 Mos now. My hands fall asleep when using them, tingling numb toes, knee, pain all over. Went to the dr. 2x already for these complaints. They said I have a vitamin D deficiency. I've had blood work, x rays, I have an upcoming internal medicine appt. I'm a hair stylist/ Esthetician I can't work I drop all my tools with my numb hands. I need to get in a class action lawsuit

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  24. I have had these strange unexplained symptoms and have had the mirena for 5 Mos now. My hands fall asleep when using them, tingling numb toes, knee, pain all over. Went to the dr. 2x already for these complaints. They said I have a vitamin D deficiency. I've had blood work, x rays, I have an upcoming internal medicine appt. I'm a hair stylist/ Esthetician I can't work I drop all my tools with my numb hands. I need to get in a class action lawsuit

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    1. They tried to tell me it was a Vit D deficiency too. I've spent thousands of dollars at rhumetologists, doctors, etc. Joint pain, facial rashes, hair loss, severe exhaustion. Finally got it out a few weeks ago and am going in tomorrow to request a blood test on my silicone levels. Agreed on the lawsuit- I'm so angry at this point. Trying to remain calm...

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  25. I've had the Mirena for 3 days short of a month and have no feeling inside my vagina. Today is a Tuesday and I first noticed the lack of sensation Saturday night while having sex with my husband. I'm a very sexual person and am at a complete loss for what is happening to me, I'm getting the IUD taken out and going back on the pill ASAP! I pray the effects will reverse, every time I think about being with my husband I start to cry. I can't believe this never came up in my research when I was considering getting an IUD, it seems like unless you know exactly what to search for you won't find anything.

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  28. I had the merina fitted after surgery last year. Through summer I found I suddenly could not bear sunlight at all as it really blinded me. Last month I started with pain and abdominal swelling. I went to my doctors who said ibs. The pain got worse and my tummy was swollen so much that look pregnant. The hospital doctors didn't have a clue. Then the dizziness started, severe pain, blurred vision, pins and needles in my arms, feet and lips. I feel disorientated a lot, like I'm in a cloud, pain in my thighs, palpitations, chest pain and so tired. The doctors know nothing. I Googled my symptoms to find this and rang my doctor back, hes never heard of it. I'm getting this coil out asap!

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  29. Hi
    I got my mirena out four weeks ago as I read her I see myself in many of these stories. I am currently waiting to get results back from my doctor. I am unwell and the only thing that makes sense is that the mirena was the problem I can't be sure until my results get back.
    Is there anyone here from Ireland?

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  30. Reading this blog has eased my mind in more ways than I can count. I had my Mirena inserted just about 2 years ago. Everything was fine, I had a monthly period, it was never consistent, but that was my only complaint. Jump till about 8 months ago when it seemed like I completely changed. Slowly over these last few months my symptoms have changed even more dramatically. I went from a happy go lucky person with energy to spare, to sleeping 10 hours a night and still needing a nap each day. Then the depression and mood swings hit. I have absolutely no reason why I feel the way I do. I have anxiety,25 lbs that appeared and won’t budge no matter what I’ve done, my hair has become extremely brittle ,dry and wouldn’t grow. My legs developed an occasional feeling of electricity running down them that I’ve never felt, weekly headaches, breast pain, fogginess, and acne like I was 14 years old, bloating and gas. I finally googled extreme fatigue the other night and cried in relief when I found I wasn’t nuts. I’m scheduled to have my Mirena removed in 3 weeks and it can’t come soon enough.

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  31. Wow...I am not experiencing this madness alone! I had the Mirena fitted in January of 2015 and got it removed February 22ND this year. I had no issues with it until about October (10 months later) & let me tell you, not so fun issues. The two major ones were anxiety and depression. Had what the Dr's called a panic attack back in January this year, thought I was having a heart attack. A couple of months prior to that, I started feeling really depressed! I have history of it and it runs in my family as well (which would have been nice to know from my OB/GYN, who so happily recommended this piece of crap birth control to me, that this synthetic hormone is probably not a good recommendation for someone who has a mental health history. This piece of plastic has brought so much grief to me, my life, and those around me. I have been on a medical leave of absence from work since the end of December, been put on medication(S) for anxiety and depression, going to counseling, and contributing to a financial stressful situation with me not working. I fear going back to work because I still am feeling the effects of "The Mirena Crash". My depression is still there, my anxiety is better but still an issue, and I have had bad muscle pains and aches on my upper right hand shoulder and back area, plus headaches everyday. I had a ton of other symptoms when I had the plastic piece of garbage in me. Thankfully those have subsided some. I just started my period today, first one I can remember having for about a year now and that I can say for the first time "Glad to see ya!" Going on about 6 weeks being Mirena free. Will this get better?? Please tell me it does. I need some light at the end of this vicious long dark tunnel.

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  32. I have had 4 Mirena coils fitted one after another over the past 20 years...for just over 10 years I have been suffering with stabbing pains behind my right eye and permanent headache which I have had numerous tests, scans etc for which have come up with nothing....For the past 7 years I have had skin rashes, brain fog, loss of memory, a tumor on my parotid salivary gland removed, my gallbladder removed, awful fatigue, lack of sex drive, chronic sinusitis, aches and pains everywhere...you name it I've had it! I'very been diagnosed with Dermatitis herpetiformis which is caused by gluten for my skin rashes and everything else was put down to stress! After changing Dr's and still getting no further forward I asked for more tests to be done...and googled my symptoms...the only thing I'd not changed during all this time was my Mirena coil....I asked the Dr about a test for silicone toxicity and was told there is no such test in the UK! I had my coil removed (only had it inserted in Feb this year...my 5th mirena!) and within 2 days my headache and pain behind my right eye had gone, no more going to sleep and waking up with it!! I feel less lethargic and my sex drive is already through the roof!! My Dr disagrees that my issues are down to the mirena...she has told me I have a Vitamin D and B12 deficiency...also I had a positive nuclear stain on my ENA test but they are passing this off as normal! I am SO glad I googled my symptoms and found this out as I really do believe that I havery been poisoned by my Mirena.
    Never again will I put any foreign object into my system for birth control reasons! I have now requested Sterilisation as this is my only option.
    Onwards and upwards with my good health from now on and good luck to all who have suffered like me and been told by Dr's that it's all in my head!
    Lisa xx

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  33. For anyone that has lost ton's of hair on this stupid iud ... did it grow back? When did it stop falling out? Any insight is appreciated!

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    1. after a year my hair is finally getting a 25% better and seems like i am loosing less hair when i comb it out. (i removed mine in April 2015)

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  34. Okay ladies I just want you to know that I just had Mierna removed today! This stupid thing is evil it is making me crazy!! I have horrible side effects, chronic fatigue, weight gain and CANNOT LOSE WEIGHT!!! It's Evil I would never put a foreign object in my body!!

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  35. I've had the mirena out for about two months- is it common to still feel effects, ironically my symptoms (severe anxiety, facial tingling brain fog) come around the time of my period. Both periods since removal have been regular-minus the awful cramps which I had prior to the mirena. Just curious if any one else notices a pattern to when these symptoms come and go. Has anyone been tested for MS- is the a correlation? Thanks so much ladies- appreciate you taking the time to read this!

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    1. there is something like "Mirena Crash" (not sure of the exact name but it is pretty typical. the patterns have gotten less sever. Also oddly for me it also has gotten more critical (constant dizziness, viscose vain, joint problems, throat issue such as lumpiness and chocking /narrowing, a lot of intolerance to food or asthma related issues) .

      remember all our bodies are reacting in different time and different ways even though our symptoms and experience are relateable so, just continue to listen to your body and experiment with ways to deal with it.

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  36. I had the Mirena inserted 6 months ago as I bled constantly after having my kids! "The best thing you could do, fantastic" said my GP! I popped the 5 year removal reminder card in my purse and that was that! 6 weeks later, a massive allergic reaction which needed 2 weeks of steroids to get under control, I racked my brain for what I had suddenly become allergic to (and subsequently threw away a beautiful new primer strobe cream for fear it may be that). My eyes went fuzzy and I have been "foggy" ever since. Then my lips and fingers were tingling I saw the GP who ran all the blood tests to see if Inwas vitamin deficient - all normal! Then the most excruciating lower back pain, burning, I couldn't sit down or drive. My back and chest muscle were tight I couldn't take a deep breath! I started seeing a chiropractor thinking I had a bad back or a pinched nerve. Lastly came a numbness and a weakness in my right ankle. Now panic and anxiety sets in..is this MS is this MND ..what is happening to me, a feeling of utter turmoil and dread! I see the GP once more (the same GP who recommended and fitted my coil) I am suffering from anxiety (I have never suffered from any such thing in the past) and was utterly gobsmacked but in a way a bit relieved to think of these symptoms being caused by my mind and not my physical body! Then the chiropractor said, it sounds like you're being poisoned he proved about the paint if used to paint the house, my contraception.....and there it was my answer! I started researching and found these blogs! Absolute relief, I am not mad! But also absolute anger that such a product is being used and that my GP could not diagnose what was staring them in the face!
    I rushed to to the GP and cried and begged the to remove it which they did that day, heavy bleeding since and now all I can hope and pray for now is that my symptoms start to resolve! I am scared to think what lies ahead, angry that I didn't realise what was going on sooner but so so glad that it is finally out! I would love to have a silicone test for peace of mind that this is definately the cause but can't did anyone that runs it in the UK ..any help on that would be amazing! Thanks for everyone's efforts to write posts, they have literally saved me!

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  37. Last week I started having tingling feeling; like my left arm was falling asleep. Then my mouth, then my legs, and now it is all over my body. It isnt getting worse, but it isnt getting better. I am going into month 5 of having the mirena, and I have been racking my brain of what this could be. My panic attacks are out of control. I have convinced myself I either have MS, a brain tumor, or something else. I came across this blog, and I now I am definitely considering getting the mirena out. I have no other system except my whole body feels like I have ants crawling all over me. I seriously feel like I am going crazy!!

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    1. Hey Arin, what ended up happening with your symptoms? Did removing the Mirena make everything go away?

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  38. I got the Mirena out 2 months ago because I became convinced that my hair was falling out. My friends (who also have the Mirena) thought I was crazy. I've been suffering from tendonitis and a bone contusion for almost 2 years and they WILL NOT heal. I have only worn sneakers for the past 20 months, I can't exercise, I've gained 15 lbs because of the injury. There is also major tingling in my toes. I made an appointment to see and endocrinologist to see if there was some kind of hormonal or endocrine issue. Maybe they can do a silicone test.

    Has anyone been diagnosed with plantar fasciitis, tendonitis, or bone issues while on the Mirena? Did it get better afterwards? I'm only 29 - these issues started when I was 27. (A year after I got the IUD.)

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  39. Okay so I don't know if this is still being monitored or anyone is still posting here but I just wanted to say thank you. Reading all of these posts has confirmed that I 100% want to get my Mirena removed. This is my second one I had the first one the full 5 years with no issues I have about a year remaining with this one. For the last 2 years I have been struggling and seeing doctors repeatedly for what I was told was IBS. I lost 18 lb with no reason, I am only 5'2" and I was 120lb so it was a substantial loss. I constantly have some area of my body that is sore and tight. Sometimes my job requires me to be physical and even doing tasks that should be fine sometimes I am sore for two days afterwards. I go through episodes a few times a month where my whole body vibrates like a panic attack. I feel foggy I can't concentrate at work. I've always had some issues with anxiety but I found over the last year that they are just getting absolutely ridiculous. On top of all that my sex drive is almost non-existent...I will admit I'm a little bit scared about the aftermath of having it removed. I haven't had a period in about eight years so that will be a change. Also I've been on some sort of hormonal birth control without a break for about 16 years so that's another concern and I hope my body reacts okay and can rebalance itself. I am really hoping that removing the iud will let me feel more like my old self. Best of luck to the rest of you ladies!

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    1. I'm with you. They have my removal scheduled for Jan 3rd. I want it out now!!! I've had nausea for 9 months and lost 20lbs. Also 5'3 now I weigh 100lbs.

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    2. I am just coming across this blog. I have had Mirena for 3 years and have all the same symptoms. I have just started to connect the mirena to all of these random symptoms that have been popping up since it was placed. Just wanted to see if there was improvement after removal.

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  40. Aw man! I had a Morena inserted in July 2016. 7 weeks ago today I went to A & E as had tingling in arms and legs and thought I was going to die. 7 weeks of tests everything negative go starting to treat me like I am mad and I find this... This coil is coming out asap!

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    1. I had my mirena removed about 2 weeks ago, but am still experiencing numbness in my legs (mostly my right thigh and buttock). Recently I've also been experiencing an internal tingling all over my body. Did your symptoms go away after removal? If so how long did it take? Thank you! -Shay

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  41. What a relief to find others that are going through some of these same things. I have had a mirena since my some was 6 weeks old so about a year and a half and I gained 45lbs struggle with anxiety that makes me not be able to cope and it turns into panic attacks. I just had my mirena taken out YESTERDAY and I feel like absolute crap today. Like horriable everything on my body hurts, no appetite, so tired weird dreams and sick to my stomach headaches and the list goes on. What is happening? I thought I felt horriable with the mirena and its 10× worse now.

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    1. Hi Hailey- I just had my mirena removed about two weeks ago and also felt absolutely terrible the days following: headache, nausea, fatigue, loss of appetite, anxiety. Most of that has subsided, but I'm still experiencing numbness mainly in my right thigh and buttock. did you're symptoms eventually go away? if so how long did it take? -Shay

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  43. This post LITERALLY saved my fucking life. Thank you so much for sharing from the bottom of my heart. After reading this I looked up the full symptoms list and IT WAS ALL MY SYMPTOMS. I had my mirena removed and although I'm still sick I'm doing much better, eating again only a week later and havent thrown up once since removal! I THREW UP ALL DAY EVERY DAY THIS PAST YEAR BEFORE IT WAS REMOVED. I could hardly get anything down and when I did most of it came back up. BLESS YOU DUDE, SERIOUSLY!!!

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