I am so sorry you are going thru this too. My daughter had some very dark days too. There were a lot of days she/I didn’t think she could take it even .......one more day. Her anxiety was so bad there were times I was even questioning her sanity! She had never had anxiety attacks before and now was often hysterical panicked and irrational. And the physical symptoms were so bad she could barely walk and her hair was falling out in handfuls. She lost all independence, lost her house, her friends, in a lot of ways her life, she was unable to work, couldn’t care for her child and had to move ...
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My daughter had extreme hairloss when she had the mirena. Handfuls of hair would come out at a time and there would be so much hair in the shower after she washed it, it was terrifying. She had always had thick hair but after a year with the mirena it all started falling out and breaking off. She looked like she was going thru chemo it was that thin and she had large bald spots.. After having the mirena removed within a few weeks it stopped falling out and has since grown back in. The hairloss was just one of many problems the mirena caused. I would not recommend it to anyone, it almost ...
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It took almost two years after having the mirena removed, but my daughter is finally doing much better. The anxiety, panic attacks, migraines, vision problems, excruciating leg pain, neuropathy,numbness and burning in legs/feet/hands, hair loss, brain fog, memory loss, hives, itching, allergic reactions, muscle weakness, bone pain, jaw pain, fatigue, dizziness, irritability etc are all so much better or gone. She still occasionally has a few lingering symptoms and she continues to take Lyrica for her nerve pain and numbness/burning in hands and feet. She also take allergy meds/mast cell st ...
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Thanks so much Diana! She really has improved so much its hard to believe. I think her vitamin D levels were 20 or 22 and I read where it should never be under 32 and 50 and above is optimal. That is what I remember reading. The side effects for vitamin d deficiency were almost all symptoms she had experienced too. Everyone having post mirena issues needs to demand they have their vitamin d levels checked and if its low take prescription vitamin d pills. My daughter goes back to the doctor soon to have a retest done to see if the 50,000 vitamin d pills twice a week has brought her levels ...
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Hello everyone. I haven’t been on here in quite a while but was just encouraging my daughter to get on the forum and post an update, but I will also. It took almost two years but she is finally doing sooooo much better. The anxiety, panic attacks, migraines, vision problems, excruciating leg pain, neuropathy, numbness and burning in legs/feet/hands, hair loss, brain fog, memory loss, muscle weakness, bone pain, jaw pain, fatigue, irritability etc are all so much better or gone. She still occasionally has a few lingering symptoms and she continues to take Lyrica for her nerve pain and numb ...
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Wow this was very interesting. Thank you all so much for sharing. My daughter continues to struggle a year and a half post mirena removal. Her main symptoms continue to be life altering, she still suffers from extreme fatigue, brain fog, neuropathy pain and numbness and burning sensations in legs, arms, hands and feet, migraines, vision problems, sleep difficulty and anxiety. I am sure I am forgetting some others! Well I remembered her Doctor saying her vitamin d was low months ago but he never told her to take supplements or anything or told us the number. She does take multivitamins an ...
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Hi ladies, thanks so much for the messages. Hope you are all doing well. Sorry I am just now replying! I wish I could say my daughter was ’healthy and wonderful’ but she is still having a lot of post/mirena health problems. Lately it’s been horrible migraines that have lasted days, extreme fatigue, along with the normal anxiety and leg pain/numbness in left arm, but the leg pain/burning has gotten much better. They did another MRI recently because of the headaches and the results were’normal’ but she is going to another neurologist soon. I don’t expect he will be able to tell her much ...
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She has seen several neurologists who said her MRI shows no sign of MS even though she certainly shows all the symptoms. To my knowledge there isn’t a specific test to show if you have ms is there?   [End]
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Yes I know that the mirena can cause women to become allergic to things they never have had allergic reactions to before. My daughter has had so many problems, it’s been a living nightmare. One year post removal she is finally getting her life back. At her worst she became allergic to everything and was constantly itching, or breaking out in hives, having allergic reactions to where she couldn’t breathe, bright red collar like rash around her neck, her whole immune system went haywire! She used an epi pen daily and was constantly having to go to the hospital. She went to an immunologist/al ...
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So sorry to hear about your mirena symptoms. My daughter has had so many problems, it’s been a living nightmare. One year post removal she is finally getting her life back. At her worst she became allergic to everything and was constantly itching, or breaking out in hives, having allergic reactions to where she couldn’t breathe, bright red collar like rash around her neck, her whole immune system went haywire! She used an epi pen daily and was constantly having to go to the hospital. She went to an immunologist/allergy doctor who put her on a very aggressive treatment. She took zyrtec, ...
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Hi there, she did a couple more baths after the first one, but it didn’t seem to be as effective as the first one. She is going to do them as needed or when she’s really suffering to see if it helps again. I think anything that makes you really sweat like that is a good way to cleanse your system of toxins just like a lot of women say exercise really helps them. My daughter is still to fatigued and frail and her legs and feet hurt, so she cant really work out, but hopefully someday. That seems to be a big help to a lot of women. Good luck with the detox bath!   [End]
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Hi Cindy, thanks for the update, so glad you are doing so well! Can you share with us what your most troubling symptoms were when you had the mirena, and also symptoms that lingered after you had it removed? How long did you have the mirena? My daughter had it for two years and is one year post removal, today is actually her one yr removal anniversary! She is doing so so so much better, but continues to have anxiety, brain fog, memory problems and leg pain/numbness/tingling in arms and hands, but it’s still not nearly as bad as it has been in the last two years. She has good days and bad ...
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Hi everyone, thanks for the feedback, to answer your questions she has only done the detox bath once which was last week but is going to do it again tomorrow. I read where some people do them weekly or more so that’s what I am going to encourage her to do as long as it seems helpful. She drank a big glass of water while she was soaking in the tub, and one after she got out, she said she was sweating so much is was pouring off her face. She said she’s never sweat so much in her life. I would encourage anyone who has tried everything to just give it a shot and let us know how it goes. It ma ...
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For those of you that have tried everything, this might be something new to try. My daughter was skeptical, but feels so much better after doing this ginger/peroxide/epsom salt detox bath. She had the mirena for 2 years, and is now almost 1 yr post removal, but continues to suffer from leg pain, neuropathy, memory loss, anxiety, vision problems etc. She read about this detox bath and was skeptical but gave it a try, and maybe it’s just a ’fluke’, but she feels sooooo much better after doing it. If you’ve tried everything else and continue to suffer from post-mirena HELL, you might give ...
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My daughter had the Mirena for almost 2 years, and is almost 1 year post removal. After having Mirena for a year she developed horrible burning/pins & needles, numbness/aching sensations in her legs, feet, arms and hands. It was so painful and debilitating, she was unable to walk or care for herself at times, and she lost all independence. She also has lost the majority of vision in her left eye. This along with countless other symptoms. The Doctors said she does not have MS, however did have a positive ANA test recently and has been screened for every other disorder, and no one can say ...
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”Transcutaneous electrical nerve stimulation (TENS) is the use of electric current produced by a device to stimulate the nerves for therapeutic purposes.” It’s a little machine she hooks up to her legs that sends electrical currents thru electrode pads, and helps with pain. Google it and you can read a lot more about it, it has been very helpful, Kate used to want to ”cut her legs off” they ached, burned, and hurt so much at times, especially at night and during her period/ovulation times. The TENS unit has really helped with her nerve pain. People use ’TENS’ for all sorts of pain, and ...
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My daughter also recently had a positive ANA test, I believe it was 1:40 speckled pattern, the rhemotologist never even told us she tested positive, and her family doctor just said ’interesting’ - so I am not sure what it means exactly, she’s been told she tested negative for everything, until the Dr mentioned that at her last visit, you would think the rheumotologist that ordered the test would have mentioned it. She has an appt with a new neurologist next month due to all her neurological problems still 9 months post mirena, but I am really not very optimistic he will tell us anything d ...
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Hi Amanda, so glad to hear you are doing better! Kate still suffers with burning legs, numbness, and nerve pain but it has really improved. We noticed a significant improvement in her leg pain when she started taking 100% high absorption chelated magnesium, I read somewhere that it helped people with neuropathy symptoms and she’s also been using a tens unit on her legs. We had tried everything else, and it may be a coincidence but she is really improving. I have resorted to loading her up with magnesium and electro shocking her haha but whatever it takes. The doctors don’t care or listen ...
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My daughter had the mirena for 2yrs before we figured out it was what was causing all her serious health issues. Anaphlaxis was something she dealt with frequently about a year and a half after having the mirena, she had over 30 or more trips to the emergency room, and saw an immunologist that finally made the mirena connection, but only after major suffering. She repeatedly broke out in horrible hives, had extreme itching, face swelling, a bright red collar like rash around her neck, difficulty breathing and truly felt like she was dying when the allergic reactions would come on for ...
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Can you share some tips on things that you tried that helped you heal, or did it just take TIME? My daughter had mirena for over two yrs and is now 8 months post removal and though she has improved a great deal in some areas still continues to suffer a great deal with neuropathy, leg pain, hands and feet burning and numbness, and almost total vision loss in left eye, and horrible anxiety and weird thoughts. I have taken her to every Dr around and none of them can explain it. She takes a lot of medication for neuropathy, Savella, gabapentin, NSAIDs, Tramedol, pain meds, but nothing seems t ...
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So surreal to read your post about neuropathy and bone-leg pain. I am so sorry to hear you’re going thru this too. My daughter had the mirena for over two years and is seven months post removal. She has good days and bad days now and has shown improvement (her hair is no longer falling out and her migraines have improved) however the neuropathy in her hands and feet and constant agonizing leg pain continues to torment her. She describes she leg and bone pain as breaking, stabbing, twisting burning sensations, and it’s so painful it’s like torture for her. She also has almost total vision ...
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Hi Muppetmom, I am so sorry to hear that your daughter is going thru this too. My 22 yr old daughter had the Mirena for two years and started developing serious health problems, neuropathy in her legs/feet/hands severe burning, tingling, numbness, pain, pins and needles sensations. She also started become allergic to everything, had lots of anaphaxis episodes, breathing problems, jaw pain, Major hairloss - it was coming out in handfulls, anxiety/panic attacks, migraines, vision loss, weakness in her legs/difficulty walking......... you name it, I thought she was dying, and in reality Mi ...
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Very well said. I think that we all agree that Mirena doesn’t affect everyone the same, but for whatever reason it can totally destroy some women’s health. My daughter had it for a year and had no symptoms and we had nothing but GOOD things to say about Mirena but then everything suddenly started going downhill and she has yet to get her life back. It’s a daily struggle and has been physically, emotions and financial devastating, and has changed all of our lives. I am so glad to hear when women give positive reports, because I wouldn’t want anyone to go thru the hell my daughter has, bu ...
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My daughter has seen too many doctors to count and been to several hospitals, seen a variety of specialists etc and has had just about every test there is in the last year+. A lot of Dr’s we have dealt with initially said ’no the mirena can’t cause that’ you must have...... MS, or mastocytosis, or Guillian Berret, or some other autoimmune disease and countless other diseases - all which were ruled out, but finally after a 10 day stay in the hospital, prior to being sent home a Dr/Pain Management specialist came in and said ”you need to get the Mirena IUD out, there are a lot of unexplaine ...
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Thanks for the info, so sorry you are going thru this also, I remember reading your posts about this problem too, I printed out your message and will have her take it with her to the eye Dr. Did you also have horrible migraine headaches, did you have other symptoms related to this diagnosis?   [End]
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After my daughter had the Mirena for a year she started having blurred/double vision, one of many side effects. This went on for another year or so. She is now 5+ months post removal and continues to have problems with decreased and blurred vision. She went to the Eye Doctor today and she was told that her vision in her left eye is basically GONE. The Dr is ordering tests and she is going back next week, but the Dr was baffled that her vision has went from 20/20 with corrective lenses, to being blind in her left eye. She is a 22 yrs old and has always just been a little near-sighted. Of ...
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Hi AJ, good to read your post, and sorry you’re still having problems. My daughter is also now 5+ months post, and though she is doing much much better, she still has good days and bad. The most common complaints recently that seem to plague her are horrible migraine headaches and this strange jaw pain that she didn’t develop regularly until post removal (she says it feels like someone is pulling her jaw down and trying to detach it from her face, the pain/pressure is so severe at times, and we have to put ice packs on her face/jaw and try to numb it). She has experienced bouts where she ...
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I am so sorry to hear you are having such a rough time. It broke my heart to read your post. My daughter has been dealing with the Mirena nightmare for over a year now and has had it out almost 4 months. I understand your anger, frustration and loss of hope because as soon as it gets a little better, it seems to bottom out. I have witnessed my daughter go thru such hell, pain, and misery, there have been days I have asked myself, how much more can a person take, when is this going to end, is she/we ever going to get our lives back? As bad as it’s been, it’s still ’better’ than when sh ...
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My daughter has been seeing an Immunologist/Allergist since having all the issues with the Mirena. He has been very helpful, and was one of the first doctors to suggest having the Mirena removed, as he thought it might be a possible cause of all her symptoms. He said, it just makes sense, foreign object in your body, and all these new problems with your immune system, there is probably a connection, plus the flag for people who have problems with their immune system advised not to get it. In addition to my daughter having the common Mirena symptoms, she also became allergic to everything, ...
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Hi AJ22, so glad to hear from you, and I am so happy you shared your story on this forum! This is a wonderful website with great information and support, and I know it will help you and others. I check it daily now as a reminder that we are not alone, and to try to offer support to others going thru the same thing. It really is amazing how similar your experience and my 22 yr old daughters has been with Mirena, it breaks my heart to know that you have had to go thru this nightmare also. It’s so scary and debilitating at times. My daughter will have had the Mirena out 4 months at the end of ...
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I am so sorry, that Dr sounds like a total jerk, so glad you aren’t seeing him anymore. The thing with Mirena is that is is affecting a lot of women from teens to women who are of menopause age. I am glad you figured out so quickly that it is not a good birth control choice for you, my 22 yr old daughter had it for 2 years and it got worse over time, and of course the Dr’s all kept saying it couldn’t be the Mirena causing all her problems. You might call around and try some other Drs and/or clinics and see if they will take it out, and if that’s not an option hang til your appointment. ...
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Well my daughter is 3 months post removal, and we went back to her Doctor Friday because she continues to have a lot of health problems caused from the 2 years she had the Mirena. Let me say first she is much better, looking back 3, 6, 9 months - she is a thousand times better, but she continues to have constant and flare ups of leg/feet pain/burning numbness/stabbing sensations, (that at times are excrutiating), has anxiety and panic attacks that come out of no where, brain fog, and severe fatigue. She has had every test known to man and seen countless Dr’s/specialists (MRIs, blood work, ...
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So sorry to hear that you are going thru this too. My 22 yr old daughter has been thru total hell, and is 3 months post removal and still struggling. She will get better for a bit, and then all her symptoms ’flare up’. Mainly leg/foot/hand pain/burning and anxiety/panic attacks. When she was trying to get her Mirena out, her new Dr’s office didn’t ’rush’ to get her in, I ended up calling the Dr that actually put it in and basically thru a fit and said that I felt like she was having an ’allergic reaction’ to the Mirena, and that I wanted it taken out immediately, and the Dr got her in T ...
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Hi there Shira Shira, she has her good days and bads. Overall she is much better, but still suffers from severe flare ups of boint/joint pain, and anxiety. She is 3 months post removal, so I am hoping that she will continue to improve. She tried the detox and took tons of supplements and has taken lots of vitamins, B12, and countless medications too. She goes back to the Dr tomorrow and we are going to ask for a new treatment plan, and see about fibromyalgia medications. Nothing seems to be working lately, and the flare ups/pain is excruciating for her at times. Hope you are doing be ...
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Glad to hear you are getting it out! My 22 year old daughter has been thru pure hell since she got the Mirena. She had it for 2 years and was very very sick the last 6 months she had it, too many symptoms to list again but you can read my earlier posts about it if you’d like. I wish it didn’t take us so long to figure out that it was the Mirena. Most of the Dr’s said ’oh no the Mirena can’t cause this’ - but then two Dr’s finally said ’get it out because there are unexplained pain syndromes/auto immune issues with Mirena in some women. She has had every test you can imagine and many s ...
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My 22 yr old daughter is 3 months post removal, and though she has improved greatly, some days are still just torture for her. Her main complaints right now continue to be leg pain/burning, and anxiety. All her tests have came back negative, and she has been tested for pretty much everything. I know the Mirena caused all of this, and has caused damage that doesn’t just go away once she had it removed. The severe pain/burning sensations in her legs/feet and sometimes arms/hands is just excrutiating. She’s tried so many different Medicines/supplements/treatments, and nothing seems to he ...
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Hi there, I am so glad to hear you are getting it taken out. The leg pain may not be ’typical’ but it certainly CAN happen and can be caused by the Mirena. The Dr’s all told my daughter that ’oh no the Mirena can’t cause that, you must have something else and ran tens of thousands of dollars worth of tests, but the debilitating leg pain she developed was definately caused by Mirena, that and about 100 other side effects that practically ruined her life. She had the Mirena for 2 years and the last 6 months with it was truly awful and she was in constant agony. The leg pain/burning/break ...
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Just wanted to give an update on my 22 yr old daughter who is 2 months post removal. She has been doing soooo much better, but last week we had a set back, during her second period since having the Mirena removed, she had to go to the hospital again, and had a flare up of the old symptoms. After getting the Mirena she started having allergic reactions to everything, breaks out in hives, has problems breathing etc (really an understatement, it is so awful). When this happens it also causes horrible burning sensations in her hands/feet/legs. It is so painful and the Dr’s don’t know what ...
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Hi Serena, so glad you are having it removed! My daughter said the actual removal was pretty painful/uncomfortable for her, but the benefits of having it out have been truly life changing. She really did have just about every horrible symptom you could imagine. She had her second period since removal, and started having joint/leg pain again but not as severe as in the past. She has also been having a lot of anxiety/panic attacks, but still compared to the last 6 months is still soooo much better. I promise it may take a while, and you may not get rid of every symptom but you are going t ...
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My daughter had the Mirena for over 2 years, and it now 2 months post removal. She had horrible side effects and was unable to function for a very long time, and suffered horribly. As bad as it can get - that’s how bad it was for her. For the first month after removal her symptoms did not really improve and I was very concerned it wasn’t going to, but at the 5 and 6 week mark after removal she got sooo much better all of a sudden. She is still experiencing some symptoms, but overall she is back to her old self. The important thing is to get it out, and don’t expect to get better immedi ...
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That would make me so angry! I am so sorry. From a caretaker/loved ones perspective: I have gotten so irritated/mad/frustrated dealing with my daughters Mirena sickness, and at times have taken it out on her and acted like a total lunatic and directed my frustrations at her. It’s not my daughters’ fault of course, but it’s been going on for so long, and she was always sick and never felt good, and it was always something with her. I got so angry and resentful at times, it certainly doesn’t bring out a persons ’best’ that’s for sure, myself included. It has effected everyone in our family ...
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I forgot to add that in addition to the 1 celebrex, tylenol, and ibruprofen (1 800 mg only) she takes each day now, she also has to take allergy medications, her immune system is so screwed up. She takes Clariten, Singulair and Zantac daily also.   [End]
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Hi there, thanks for your message, my daughter continues to experience hairloss, but 6 weeks post removal it isn’t falling out in clumps/handfulls like it was, she is still having more than ’normal’ hairloss, but the amount that is falling out seems to be lessening. I am certain this is hormonal and definately caused by the Mirena. I am hoping too that the hairloss with continue to slack off. There for a while I was afraid she was going to lose it all it was coming out so much at a time. It got to where she would try not to even touch/brush it, it was falling out so bad. She had her ho ...
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Thank you for your message. Yes at one month she was still really stuggling with the leg/joint pain and everything else, but for the last 2 weeks she has really started to bounce back and doing so so so much better. It’s unreal, I was beginning to worry the day might not ever come! She is still having headaches, fatique, blurred vision, burning in feet/legs (though not nearly as often or as severe) and hairloss. I just called her to confirm and she said she is basically still having a lot of her symptoms, but they are not as bad as they were and she is able to actually function now. She ...
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I totally agree with you that environmental factors can cause your symptoms to ’flare up’. After my daughter got the Mirena, she started becoming allergic to EVERYTHING, foods, medications, environment, things she had never been allergic to before. After having the Mirena she started having these chronic and severe allergy attacks, problems breathing, flushing/hives and throat swelling/anaphylaxis. In addition to all her other symptoms, leg/joint pain, blurred vision/dizziness, migraines and many other things. I have no doubts that her allergy episodes all had to do with the Mirena, and ...
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My 22 yr old daughter had horrible problems with the Mirena, she had it for 2 years, and 6 weeks post removal, most symptoms have improved but now she has started having extreme anxiety and panic attacks. She has been scared to be alone at times and is just hysterical when she starts feeling this way. I personally think it’s the anxiety/panic attacks are definately hormone related, but I am hesitant to start her on any artificial hormones becuase of the mess that Mirena has caused. I am hoping that her body will regulate itself over time and she will continue to improve. I am so sorry ...
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Thank you so much, I was really getting scared, she was still really bad for a month post removal, but finally feeling so so so much better now at 6 weeks. She is only taking 1 Celebrex for the joint pain in the morning, and 1 800 Ibuprofen in the evening, and tylenol during the day for break thru/joint/leg/aches/pain, and that’s it! That is huge, she was taking a lot of different pain meds etc, but she’s improved so much now she doesn’t need them. Celebrex seems to really help her with her leg/joint pain. She tested negative for RA and everything else, so this has all just been Mirena ...
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Bless your heart, we all can relate to what you are experiencing. RUN and I mean RUN to your Dr and have it taken out, and report your problems to Bayer and the FDA. It will take a little while for you to start feeling better, but you will get better. My 22 year old daughter got the Mirana shortly after giving birth and had it for just over 2 years. The last year she had it she developed horrible pain, mainly from the waist down, in her legs/feet/knees but at times in her hands/arms, along with numbness/tingling and burning sensations. It practically destroyed her life, she could barely ...
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http://www.fda.gov/Safety/MedWatch/HowToReport/ucm053074.htm I am attaching the website for the FDA that lists instructions/methods for how to report your adverse reactions/symptoms caused by Mirena. You can do this online, over the phone, or print out the FDA form and either mail/fax it back to them. We have been trying to report our horrible experience with Mirena directly to Bayer, but their website won’t take the information, says ’error’ when trying to submit it, so we called and left several messages, when we finally got thru the lady we spoke with at Bayer was openly skeptical ...
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I am so sorry, I know how frustrating it is, I am more confused now than ever, but in trying to locate the test, I emailed the lab and that is what they told me. It does appear that the test for Silicon (which matches your test name and code) is not the same thing as testing for Silicone in someones blood. The medical profession seems just as confused about it as we are! I have read about ’lymphocyte chemical sensitivity tests for silicone’ but I still don’t really understand what that test tells you or where to get it. My daughter has an appt soon with her allergist, and we are going ...
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If you have not already reported your adverse reactions/symptoms caused from Mirena to Bayer and the FDA please do so as soon as possible. It is critical every women having health problems caused by Mirena, REPORT WHAT HAS HAPPENED TO THEM SINCE GETTING MIRENA AND THEIR SYMPTOMS. My understanding is that when you call and report adverse reactions they are required to report it to the FDA. If you have not already submitted a internet report on Bayer’s website (I had problems with the webpage accepting the information and it would only allow you enter a couple sentenses in the decribe pro ...
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Hi there Godismyrefuge, yes I saw your post, sorry I am just now responding. Yes it for sure appears that Silicon is not the test we are all needing, and I don’t know if one even exsists, if there is I certainly can’t find it, other than ’chemical sensitivity tests ex silicone’ which I don’t really have any information on, or know if that would tell us/confirm what we already suspect, and that is that SiliconE is doing severe damage to our bodies. It’s so frustrating! My daughter made a complaint with Bayer, I will post more about it later but they were very rude and seems defensive and ...
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I am so confused. Is it possible they tested you for Silicon instead of SiliconE, it appears there is a difference? Just trying to figure this all out. urgh. Hope you are feeling better. Thank you.   [End]
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I emailed the NMS labs about the test for Silicone and this was their reply: NMS does not perform testing for Silicone. We do testing for Silicon (this comes from the crust of the earth) I do not have a lab that we can refer you today. Our apology’s. Thank you,   [End]
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Thanks so much for the info, do you think that Sonora Quest Lab’s actually sent your blood to another lab to have the test ran? I didn’t see the Silicone blood test as a test that Sonora runs on their website? If they did send it off to another lab to have it tested, do you know what lab they sent it to? I noticed that the actual test code on your lab report on your blog shows ”4190SP Silicon Serum/Plasma”, and the only lab that I can find with that test/code on their website is NMS LABS. Not sure if they do this or not, but they have this listed as a test they do on their website and i ...
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Does anyone know the name/location of a LAB in the USA that tests peoples blood for silicone levels? I have some Dr’s saying there isn’t such a test, and some saying there is but they don’t know where to get it, and have called labs and they say they don’t know either. We keep hitting a brick wall. Can someone that has had the Silicone test post the name of the lab/location/contact info to share with everyone so we can relay this back to our doctors?   [End]
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Hi there, I wouldn’t let the Dr’s peg you with Lyme Disease, just because they can’t really come up with anything else, and because the symptoms fit. The Dr’s initially thought my daughter had a lot of things and convinced us she had MS, only to later rule it and every other disease out. The symptoms of Lyme disease do tend to mimic symptoms/problems Mirana users experience, and something I had also researched and I know that makes it really confusing. After seeing what Mirena has done to my daughter, I know it is poison to some women and more likely the cause of your problems, in my opin ...
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I think it is pretty insulting to imply or rather SAY that womens ’symptoms’ are related to their diet, age, or lifestyle, or they probably have some undiagnosed disease, and that people shouldn’t blame it all on Mirena. These women aren’t idiots and hopefully neither are their Dr’s. WE all know that Mirana is destroying a lot of womens health and lives, besides our own. (Is this person a sales rep for Bayer or something and works off commission maybe?) I mean read the forum and educate yourself, instead of just posting a bunch of replies that basically all say ’the mirena can’t cause that ...
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My 22 yr old daughter is 2 weeks post removal and using detox products (could not drink shakes due to nausea), but she is still suffering from the debilitating nerve pain we are certain has been caused by the Mirena. Has anyone else experienced this and does anyone have any suggestions on how to get relief? It seems to get worse at night or after showering (body temperature changes). But then can ’flare up’ for no reason and last/keep her down for days. Pain medicine doesn’t seem to help this kind of pain (even dilaudid, morphine, fentynl). She is going to go back to a neurologist and m ...
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My daughter became severely allergic to everything after getting the Mirena (food, environment, medications) she went to several allergists, after experiencing chronic/severe ’anaphylactic episodes’ hives/difficulty breathing/flushing/throat swelling/nose bleeds, and at times was having to use her EPI pen on a daily basis and had to go to the ER for emergency allergy treatment probably 20 or more times in a one year period. They ruled out mast cell disease and did all allergy testing, and came to the conclusion that this too was most likely caused by the Mirena. Looking back now, we would ...
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Jen, can you share more about why you are seeing an allergist and had all the allergy testing? Thanks for sharing and hang in there.   [End]
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I wanted to add too, that my daughter became severely allergic to everything after getting the Mirena (food, environment, medications) she went to several allergists, after experiencing chronic/severe ’anaphylactic episodes’ hives/difficulty breathing/flushing/throat swelling/nose bleeds, and at times was having to use her EPI pen on a daily basis and had to go to the ER for emergency allergy treatment probably 20 or more times in a one year period. They ruled out mast cell disease and did all allergy testing, and came to the conclusion that this too was most likely caused by the Mirena. ...
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Mirena is causing devastating side effects to women all over the world. How is it that so many women can have the exact same debilitating symptoms from having Mirena, that basically ruins their lives, yet it remains on the market and the medical community seems oblivious that it is happening? You get on this one website alone and read literally thousands of stories of women suffering and begging for answers, who have lost their lives to Mirena, and have went from being healthy, to being unable to function? Why are we unable to get answers on how this is happening and why? How can we as wom ...
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Hi Jen, I am so sorry you are going thru this, it is so unfair that Mirena is hurting you and so many other women. My daughter is having a very hard time too. Please know that you are not alone and it is going to get better. You have to hang in there and somehow manage to get thru each day, however you have to do it. We are all praying for your recovery and the good days that are to come in your life. We have to believe that we are all going to get our lives back, we will, it’s just going to take time. You have to just keep pushing thru and hanging on, it will get better. You are not ...
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Hi Diana, to answer your questions her feet are often cold/freezing to the touch but yet she feels like they are on fire. I have noticed at times that her calves/feet are freezing cold, but above the knee her thigh is warm/normal temp, it’s very bizarre. I haven’t noticed flushing on her feet, but have noticed her hands being very red/splotchy and cold when they are hurting really bad during a flare up. Today was another very bad day unfortunately, tomorrow will be her one week removal date. Here’s to hoping things calm down. This week has been horrible, only one ’good’ day. I have n ...
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Thanks for the message. Bless your heart, I am so sorry. I hate to hear that you are also having this happen to you. Even though it is good to know we are not alone, I would never want another person to have to deal with this, becuase I know how horrific it is. It’s so hard to explain to Dr’s what’s going on and just how severe it is - when Kate has an ’episode/flare up’ it starts with burning in her legs/feet and then tends to spread upwards, and her chest becomes flushed and she gets dizzy/blurred vision, chest pains, numbess/burning/tingling legs/hands etc. She said she feels like she ...
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Hi Ashley, how long did you have the Mirena? my 22 year daughter KatelynBrooke had her Mirena taken out 5 days ago after having it a little over 2 years. She is still very sick and had a horrible day today, her entire body is aching and burning, she feels like her feet and hands are on fire and all her bones are ’breaking’ and she is so dizzy. She describes numbness, tingling and pins and needles all over, usually from the waist down and her hands, but sometimes all the way from her neck to her toes on the right side of her body. She says it’s deep down like her muscles are stretching a ...
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Thank you so much for the information and support. It’s a huge help to hear that we are not alone in this and are not crazy, even though at times I think it has drove us close to crazy! It makes me so angry that so many women have been scared to death thinking they have MS and are suffering endlessly. I am going to make packets for all my daughters Dr’s detailing what’s going on, since no one seems to know that Mirena causes all this bizarre and dibilitating stuff! Hang in there and thanks again. - Heather   [End]
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Hi Diana, thank you so much for your kind words and all the good information. I hate to hear you are going thru such a rough time too. It makes me so mad that Mirena has done this to so many women and their families. To answer your question, I don’t know about the term ANA markers, but they said they did all the auto-immune tests and MRI’s and everything was ’normal’. She has been in/out of the hospital too many times to count, and they always thought it was something but then would rule it out, testing included bone marrow, spinal tabs, blood work, mri’s, neuro testing etc. I am pos ...
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My 22 year old daughter has had the Mirena for over two years, and in the last several months she has had excessive hair loss, among many other devestating symptoms. She had it taken out Friday. Her hair loss has become so bad it literally comes out in clumps and she has lost so much. It is still falling out. I would really consider having it removed. It has ruined my daughters health, and all other causes have been ruled out. Plus reading all these other posts from women with ’mirror’ symptoms, it solidifies that Mirena is not always a safe/healthy option for everyone. Hang in there ...
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Thanks so much for all the good information. We ordered all the detox info and are hopeful that it will help her like it seems to have helped so many others. I will keep you guys posted. I can’t tell you how much this blog has helped us put things into perspective and understand things better. I am kicking myself that we didn’t connect the dots sooner. I never imagined that Mirena could actually cause so much damage and be the source of all this MISERY. Truly, it’s been horrific! When you have so many Dr’s thinking that it’s MS or so many other incurable diseases, and it’s actually ...
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After 6 months of watching my 22 yr old daughter suffer and taking her to every hospital, neurologist, pain specialist, and after her latest 9 day stay at the hospital..... a pain specialist finally told us ’I think she needs to have her IUD/MIRENA taken out’. She has constant/dibilitating leg pain, numbness, difficulty walking, tingling in legs/arms/hands, hair loss, back pain, migraines, weakness, dizziness. She has been thru complete HELL and tested for every auto-immune disorder, (they thought she too had MS) had MRI’s, cat scans, bone marrow testing, spinal taps.... all in attempts to ...
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