Mirena Long Term Solution, Angiodema, Urticaria, Joint Pain, Anaphalaxis
Posted over a year ago
I have been on mirena now for 10 months. I was on the depo for 10 years prior. I loved my depo adn only went off of it after Kaiser said I could not do it any longer. I was told that mirena was a god send and a lot like my depo. I can say that the ... more »
I have been on mirena now for 10 months. I was on the depo for 10 years prior. I loved my depo adn only went off of it after Kaiser said I could not do it any longer. I was told that mirena was a god send and a lot like my depo. I can say that the combination of depo and mirena I have not had any period at all. but that is where the happiness ends. I have experienced moths of breast pain. it hurt to touch them let alone put anything on them. after about 6 months and numerous trips to the vet it disappeared. then I got a small rash on my neck and by my arms. went to dermatology and since then I have been there, or to my primary or an allergist every week since then. the rough severley itchy skin is constant. remarkably every 29 - 32 days it fades for 2 days or so and just when I am sure it is going away wham back it comes and each time it is getting worse and worse. having never had any skin problems before I believed the doctors tha tit was folliculitus, then they said dermatitus, then they said uticaria and then hives or the last straw i was causing it that it was in my head. i just got a new allergist and while she doesn't knwo if it is my mirena she can tell me I have histamine levels that are off the chart. my husband is allergic to a lot so we already use free & clear everything and my housse is spotless but I am still being told it is soemthing I am doing to myself. I have also been reevaluating my things and I relaize I have been experiencing a lot of numbness and joint pain. so much so that my primary sent me to a rhuematlogist and he ran every test for lupus, and many other diseaeses adn even cancer. I was going crazy. Iwas beginning to think maybe I was mental. I have since been researching mirena and I am finding it so much more than what the pamphlet says. I finally got the nerve to call my ob, adn she ahs since been researching things with me and we know for sure that no matter what next week I get my mirena removed. I am just feeling so alone and depressed. I am 33 years old and instead of enjoying my new marriage I am contemplating a divorce becasue I do not want him to be stuck with soemone who might be crazy. seeking support and anyone else who feels this way.
Harris - you are not alone i have been experiencing some of the same side effects and i thought it was just me too. but instead i have been itching in the vagina area and it's not an yeast infection. The itching comes and goes i dont know if its the copper or what? I just turned 37 and I"ve had the mirena since 6 weeks after my baby was born in dec 05 and i thought that my body just had to get adjusted to the foreighn object but it only gets worse and on top of that i don't like making love to my husband because he said that it feels like something is sticking him. i asked him what does it feel like "like a needle" i don't know what type of birth control we're going to try but this mirena has to go. it's not due to come out til 3-9-2011 but i won't have any skin left by then. It is my prayer that things go well with you. God bless. Signed keepin it real
Kskb1 - I have had the Mirena for about 4 years - 3 and a half of which I have suffered with urticaria, then angiodema, now anaphalaxis. The specialists I have spoken to all deny it can be the effects of the Mirena, but I am beginning to think that it HAS to be. I have been to countless allergists and have changed my diet, environment and lifestyle all to no real long term solution. I have so much joint pain that by the time it is night I am in agony. If I find out that it IS the Mirena ( I am having it removed very soon) I will be so relieved as I just can't live with the side effects any longer. I have also been tested for arthritis, lupus and countless other things. You are the fourth person in a matter of weeks I have found with these side effects - I wonder how many more are out there?
Kelmichele - I had the Mirena for 4 years and experieced joint pain, low white blood cell count, severe allergies(doctors put me on 3 different allergy meddications) dizziness etc. etc. etc.....doctors did lupus test and many other tests but finally concluded that it was all in my head. I just had my mirena removed 3 days ago and am starting to feel better already but am taking antibiotics for an infection that the mirena caused. Still cramping. Hope you find a solution to your problems as well.
Kmom3904 - I had Mirena placed in July. I have began to itch constantly and break out in hives at random times and in random places. It seems that the itching is increasing in intensity, frequency and duration. I cannot find any other cause for the itching, like you I live with someone who suffers from severe allergies and take all the necessary precautions to reduce environmental allergens. The itching is so unbearable and becoming so constant that it is interfering with my life. I am planning to have Mirena removed ASAP. Especially after searching the web and discovering that itching is a side effect discussed on many forums. It has GOT to be the Mirena. I don't care what anyone says.
Feemac86 - I had the Mirena fitted in Jan 07 and all was fine until about september when the itching started, sometimes it concentrates in one area, ie, hands, feet, stomach, breasts, at other times it is all over, it is unbearable at times, have spoken to doctor who said never heard of these symptoms but I am having it taken out this week as i am convinced the Mirena is causing this itching. If anyone had these problems and got it removed and it made a difference, please tell!!
Not_a_doctor - I got Mirena in May of last year and although I love love love not having to remember a contraceptive, there have been changes that I never associated with Mirena until recently. I had never had a yeast infection before and in the past year I've probably gone 5 months without itching. I kept thinking I wasn't taking care of myself right so I started eating better, especially yogurt because I heard that helps. Nothing seemed to work so I went to the doc and sure enough I had a yeast infection. Monistat 3 cleared it up for a while and then it came right back. Besides constant yeast infections I had bacterial vaginosis which the doc said just "comes out of nowhere and anyone can get it" She gave me a 10 day treatment for that and in about 3 months it came back! Now I have always had a healthy, normal smelling, normal discharging private area and now I keep infections, don't smell nice 25-50% of the time and I discharge like a water faucet. The Mirena is the only thing that's changed in my lifestyle so you tell me. This thing is gone as of next week.
Smoore74 - I am here to say that I had my mirena removed in October of 2007. Within days my skin began to appear more normal. And my headaches are gone and so are many of the other symptoms. I do not regret it one bit. What I have begun to notice is that now in the 24-36 hours prior to my next "period" the itching of my skin comes on and for a day everything itches back to the no medication can help it or stop it phase, but then when my "period" shows up it gradually fades. My OBGYN still thinks I am nuts, but my allergist and rhuematologist believe that I am still experiencing the last of the side effects. All I know is that now 4 months later I have my energy, my skin feels normal and I only have 2 small spots that are still healing, but they are where the initial rash was for over a year. I am also here to say that money or not there is soemthing wrong with mirena. I am pretty healthy I do not smoke or drink but in the time I was on Mirena I had hives, severe allergic reactions, my arms and hands would go numb along with my legs. My skin became paper thin like an older persons skin, and just having something brush against it would cause welts or cuts. Now it is better, my hair is not falling out in as big of handfulls, and every week I see more improvement. I cannot say how bad this is as the worst thing it did was the emotional problems. Do you know the toll it takes to go to doctor after doctor and have tests done only to be told it is in your head, or that it is probably cancer or soem other disease. I was 32 - 33 years old, and just married. It is nice to know I am not crazy, but the damage is done I mean my husband and family are still here, but the fights and rants won't be forgtotten as I lashed out at anyone who didn't understand, well no one really did. I do not regret having it removed. I hope some day like in England and Australia that the US will list skin conditions, numbness and allergic reactions on the pamphlet. I am more than happy to talk with or communicate further. I hope all out there who read this just at least stop and think about it.
Eire - I have had mirena for 3 years and have experienced horrific skin allergies and even been diagnosed with hay fever. My allergies were trigerred by dust, nuts, wheat, perfume, body lotions , rubber and basically the so called wheel marks and hives were unbearable. The allergies seemed to intensify in he evenings where my whole body would break out in itchy marks. Though the leaflet mentioned skin irritation( i am in the republic of ireland) my doctor is/was reluctatnt to have it removed and prescribed anti histamines for me. After reading his i am definately having this thing removed. I have developed an itchy rash around the skin sorroundingg my vaginal opening and no thrush or fungicidal cream is working.his is the last straw and there has to be an easier way of birth control.I am not ready to be reduced to a pill popping allergen .
Carlyandlee - Hi there -- I know this post is a little older (from back in September) but I'm going through some very similar skin problems, and I had my Mirena IUD removed today thinking that it's causing me to break out in hives all over my body. It didn't start until I'd had the Mirena in for about 6 months. If you see this, could you please respond to me, and let me know if your hives went away after your Mirena was removed? I am hoping this is the case for you and for me.... if not, I'm going crazy trying to diagnose myself with what could be triggering this. My situation sounds VERY similar to yours. Thanks!
Newmember08 - I had Mirena inserted in early January 08, within 3 weeks my face and eyes were swollen very badly. I also had a bad case of sinusitis.I was going to have Mirena removed, but it fell out a few days before scheduled removal. The swelling has gone down gradually since then, but I still have swollen under eyes (especially the right eye) and occasionally swollen lids. My right ear is still blocked. Seeing an allergist in one week (have been to many doctors). Wondering how long before I look and feel normal again. Anyone else get these problems? I've never experienced anything like it before in my life (I'm 34 years old).Has been hell.
Saved1 - I had Mirena inserted on October 07, since then I have had very abnormal periods, very light periods as a matter of fact but lasting almost 3 weeks, It was horrible, I also experienced low energy, fatigue and even started to feel depressed 6 months after...........I lasted 10 months with the mirena and I just had it removed a week ago.......I feel much better, I already went through a normal period and my sex life is back to normal......I tried the patch too, but it gave me leg pains and numbness.....so I'm going back to the pill.....
Tina7234 - Hi all - I just had the mirena removed yesterday (inserted March 11, 2008). Since having the mirena, my joints ache!! Especially the knees. My husband volunteered for a vasectomy (sp?) thank goodness.
I can't wait for my system to go back into balance. For those of you having symptoms, listen to your body and your gut instinct.
Cgallagher - Did anybody have horrible hair loss? I only had mine in for 6 weeks and i got it removed yesturday!!I have a 4 month old and i am following weight watchers and going to curves fitness centres 4 times a week . When my daughter was 2 and a half months ols i had lost all my baby weight plus 17lbs..since Mirena i have continued my program and gained 7lbs!! in 6 weeks!! my joints are screwed up it hurts to stand up my knees are so bad..Nausea..depressed..but the worst would have the be the hair loss!!! my hair line had recieded over an inch in the last 6 weeks..unbelieveable..why are do'cs so quick to say it's not the Mirena..I live in Canada and the dam brochure did nto even mention hair loss..i am a Pharmacy Tech and my CPS which is a reference the doctor's use does not mention it either...so horrible iam now 25 and balding..i have post phoned my wedding scheduled for mar 2009 indefinalty untill i get my hair back..i can't believe how much this product has ruined my life in 6 weeks...i feel so hopeless...
Carpenter - I had mirena put in Aug. 2007. For the last month I have not felt right. I have always been a heathly person, but ...what the hell is going on. My ankles and feet are killing me, yesterday I had a huge tender bruse -that I don't remember getting- and is magicly gone today, headaces, my energy level fell of the truck, nausea, cramps, and my right eye keeps twiching. Could it be the mirena?
Amber881 - I've had Mirena for almost 2 years. I've sometimes felt like bugs crawling on me, making me itch like crazy. Then started the discharge, and varginal itching. It's so bad I itch it raw. I thought I was crazy. I've been on so many prescriptions trying to clear it up. I suddenly thought today about the Mireana and when it all started. It's comming out. I also suffered from horrible mood swings. I don't feel like my normal happy self. I just hope it won't take long to recover. If there's ever a lawsuit I'd be the first to join up, since none of these side effects are even listed. I've already had the cyst that thankfully went away. I'm done.
Spence_me - Hello all. I too am a new recipient of this "miracle" called Mirena! I just had my third son in late July, and I had weighed my options, and with some STRONG convincing from my OB/GYN, I had decided on the Mirena. I had it placed on September 20, 2008, and no more than two weeks later my hair began falling out! Now when I say "hair falling out", I mean every time I would brush off my shoulders, brush, comb or wash my hair I would get hand fulls! The hair loss got sooooo bad, that I couldn't sit down to a descent meal without finding MY hair in my food. I'm always bloated. I bleed for weeks on end. My neck, arms, legs, and breasts are soo itchy it's rediculous. I have had to treat a new yeast infection every five days since placement, and this, from a person who has only had a yeast infection maybe TWO times in my life. I am an emotional wreck. I mean, right now as i'm typing, I'm tearing up because I thought that I was going crazy. My marriage is on the rocks because I'm so temperamental, and heck, my husband and I have been waiting for love making for LONG ENOUGH! My newborn is only 3 1/2 months, and I can honestly say that I've had only about TWO weeks total to deticate to the intimacy of my marriage (now keep in mind ladies, that the last two to three months of pregnancy are not ideal for an emotional "stress ball" to be having sex either, so you do the math). But I am PROUD to say that I WILL BE CALLING MY DOCTOR 9 a.m. MONDAY MORNING TO SCHEDULE MY REMOVAL.!!!!!!!!!!!!!!!!!
Esee - Hello....
I had the Mirena IUD placed in me on Wednesday ( yep...8 days ago!!!!! ) I am having Kaiser remove the darn thing TOMORROW!!! I broke out into hives all over my arms, legs & stomach. The itching has been unbearable!! I had Kaiser give me a shot of "some sort of steriod shot yesterday".. I felt better within half an hour...they prescribed "prednisone" to control the rash, but honestly my rash is pretty much back today...I am counting down the hours to get the IUD OUT TOMMOROW!!!!!!
Vtownmom - I had Mirena put in after my 3rd daughter in Jan. Shortly after, I began getting bumps on my legs and chest. They were filled with a clear liquid and there was no end to it. The skin irritation was so bad, we removed the IUD. Fast forward a month....Well, the itching is unbearable, I breakout all over my body, and I'm having the worse pain in the va-j-j area. Feels like tiny needles. Has anyone experienced this??? I have marks that look like scars all over my face and arms;yet, they weren't there 3 weeks ago. Also, it seems to be a lot worse at night time and in the heat. The worse part is, my 2 youngest daughters are begining to experience the samethings. I went to a dermatologist, who had no idea what he was doing, he said the marks were old scars. When I told him they only appeared a few weeks ago, he looked at me as if I were nuts!!!!! The pediatrician had the same reaction. Can anyone please spread some light on this... I have a 2 year old, who was up all night screaming with vaginal pain;which, I was also experiencing.
Sable1981 - OMG! I too am going thru this. I have my Mirena put in feb. 2009 and taken out April 2009. When will the hives go away? This is crazy and my doctors think I am nuts too!
Natashainohio - so i have wondered about other peoples itching. is it just in the vaginal area or all over? i have constant itching and its driving me crazy! and its not just in the vaginal area its EVERYWHERE! i have scares now from where it itches so bad i cant stop myself from scratching! my breasts have scares and even my thighs...HELP!
Wbianchini - OK, I had my Mirena inserted 2 weeks ago. I had a heavy bleeding for about a week, which is tapering off. Very fatigued, terrible low back, and neck pain, little stabbing pains in my legs, cramping calves, pain in ankles and feet. Itchy skin and headache. As I can see alot of other women are experiencing this, I was starting to think I was getting arthritis, I am 35 and it does run in my family, does anyone else have this muscle and joint aching, especially in the back of my legs and behind the knees.
Paru26hotmail - Ihad mirena put 3 weeks ago,after 8 weeks of my delivery, am bleeding since than ,itching started since 2weeks , i did not had any skin problems before more on my thighs,back legs,am 35years,iam a dentist ,idont know what to do?
Gillycoops07 - After 10 weeks I finally had the Merina removed today and although sore, I am just so relieved. Prior to the Merina, I was on the pill and happy. I was an avid mountain biker (burning 2500 cal/session as recorded from my heart rate monitor 3 x week), a runner (1500 cals/session 1 x week) and attended spin class once a week. I am a project manager for a pharma company and most importantly a mother to my 10 year old daughter (whom I raised almost single handedly prior to meeting and marrying my husband 2 years ago). I was a highly motivated, happy and positive thinking person who dealt with whatever life had to offer. In the 10 weeks of living with Merina, I have experienced mood swings, irratability, low self esteem, lethargy (became disinterested in most activities), sadness, spotty neck, face and back, bloating, stomach cramps, back pain, joint stiffnes, 12lb weight gain, old looking skin on hands and general feelings of inability to cope with my job, exercise and life in general (is it me? am I going insane?). The last week has brought an itching vagina and feelings of allergy around my sinuses. I had mine fitted at a local family planning clinic but called my GP to have it removed as I couldn't wait for the next FP session. Strangely, he enquired (during a telephone conversation)if I had felt coerced into having Merina fitted, which I didn't. He asked me to come in to chat first however, on my arrival, he immediately acknowledged that I had made my decision and removed the device. I did wonder if he knew that there was more to the Merina than the patient info leaflet provided. I am shocked that the info leaflet didn't mention the extent of the side effects as these should have been obvious during the clinical trials. I am restless tonight as I am still sore however, I hope that my positive old self will return soon and I can get back to normal asap. I hope my post has helped someone in someway. Love to all.xxx
Tracy129 - Thank god I have read this site, I have been having terrible itching and buring in the vaginal area for over a year now, its so bad i am crying shilst writing this message, my gyno dosn't seem to know whatw wrong with me my gp just gives me HRT, I now have inplants which I don't think I need, I have been to a dermatologist and he dosn.t know either, I get so swollen and sore down below its unbeleivable. I was on thrush medication on and off also for a couple of years, I am just at my witts end.
Lina79 - I have experinced the same symptoms and was beginning to lose hope. Thank you for this post. I was also beginning to think I was crazy.I have been dealing with strange rashes and horrible joint pain along with numbness. I was going to see a rheumotologist but instead I am calling my ob gyn.
Michele1977 - I got mirena in august 6th and 2 days later had severe itching all over my body,called ob/gyn she said it was not the mirena, that i should go see my primary dr. , they say it most likely is mirena . I had it removed yesterday...they say it will take a few days to get out of my system....now i'm just waiting for the itching to stop... hopefully it does.....becareful ladies
1000lashes - Are you kidding me?!! I am ready to go pull the damn thing out myself after reading all my own symptoms in YOUR words. I am so miserable I want to crawl out of my skin. Yes hives, yes joint pain, yes yes yes. Wow. I really wasn't sure, I just had a sneaky suspicion, so I Googled Mirena and hives. Glad you all are there. Now I have no doubts. Thanks, I am making an appt NOW.
Mstrenahs - Ladies, I had Mirena put in, March 2007 around May 2007 the joint pain began and has gotten extremely worst. I feel cripple at times and instead of 45,years old. I feel 80. I had eye twitching, sore breast, foul odor, swellen in my limbs and hair lost. But the worst of all is the joint and muscle pain, Now that I have read the post on this site. I know I must remove it ASAP. After 3 and a half years of issues.I must have been crazy. I just didn't want to get pregnant, I have a 3 and a half year old. But it's got to go. Thanks!
Erin2109 - OMG! I still think I'm crazy LOL..But my soon to be husband thinks I'm not but..I don't know what to do about this. I want to get it removed but then I don't. Mirena you made my life MISERABLE! My hair is falling out, I have ugly acne, my back and joints are sore, and I'm always getting yeast infections! UGH!!!!!!
Nc_chikka - If your husband feels like he is being poked during sexual intercourse, the strings on the mirena need to be clipped shorter! I have had the mirena for almost a month, the only reaction I had was from the IODINE used in the sterilization of the mirena before placement ..because I am allergic to iodine.. took benadryl it went away, good to go ..... haven't even had a period this month( just a little discharge ) WOOHOO, and I am hoping that doesn't change!! Now that I am into the 4th week of having the mirena, my arms break out in hives more often then before, and worse than before... Much worse than if I were to eat shellfish even!! I am hoping that my body will adjust and this will go away, or maybe it is some thing else I am allergic to, time will tell,,,, as I am not using the mirena for birth control , I am using it to control heavy bleeding during my cycle,, so I am very pleased,, I will gladly deal with rashy arms, rather than putting my life on hold one week out of the month for an unnecessary horrible period!!
Good26 - I am 41, have had the Mirena for three years. I have pressure induced angioedema so bad just one day of work will cripple me, started out the same as many others, itching of my scalp, then all over. I thought I had bugs! Red bumps at base of my scalp leading to huge welts at top of my head! Bled on and off for almost 9 months of insertion, vaginal discharge started changing becoming thicker and then started smelling foul. I now have to douche once a week! Very chunky like bits of tissue way up inside. Then started the huge itchy, burning painful bumps, almost like a lemon sticking off of me. Went to doctor, received steroid shot, pills, and told to take antihistamines. If I have any pressure on any part of my body for more than a few minutes, the area itches, swells, burns and hurts! Then came the thyroid disorder. After reading all of these posts I have made an appointment for tomorrow to have this alien being removed! I pray this is what has been causing all of this. Oh...and my tongue and throat are even start to swell. Breasts hurt, back aches...I'll post next week again and explain whether or not I find any relief. I'm scared I am going to go into anaphalctic shock and die!
Melann - Oh wow... I have had itchy feet and very, very, very bad joint pain... Had a battery of test taken, blood work and all... I hate to say it but I'm happy to have found this site.. Now I don't feel crazy...
Deacetylase - Hi all,
My wife is experiencing many of these same symptoms. She had the Mirena placed just over two years ago and has since been diagnosed with rheumatoid arthritis (RA) with secondary Sjogren's syndrome (dry eyes, mouth). Her pain first presented in her fingers approximately 11 months ago (34 yrs old) and rapidly progressed to a near-debilitating state. She now has pain throughout her joints, especially in her wrists and knees. She is continually exhausted and bruises very easily. She has also experienced severe lower back pain and pain over her hamstrings, and she was recently admitted to the hospital for bladder infection-like syptomes that were NOT resultant from an actual infection. In retrospect she noted the bladder spasms were more like the tension felt on her uterine tendons during pregnancy.
We have a team of very qualified docs looking after her, but they are baffled by the aggressiveness of the RA and its utter resistance to medications, including high-dose steroids. In fact, they are now second-guessing the diagnosis of RA altogether.
As a physician and scientist respectively, my wife and I are often skeptical of anecdotal medical information found on the web, especially when there is no published scientific literature describing correlations between Mirenea/levonorgestrel and RA. Indeed, there is a common age demographic for Mirena use and RA diagnosis (i.e. many people actually suffering form RA will have also had a Mirenea placed just by chance). My sister (an OB/GYN) has not heard of such a correlation, though she is actively researching it now. My wife has also stated a gluten-free diet given the anecdotal evidence linking gluten with RA symptoms.
I am curious to know how many of you have either experienced or heard of similar experiences, especially those occurring > 1 yr after having the IUD placed. Also, is it the general consensus that the affected individuals "truly" get better after removing the device, or are the symptoms mildly improved (or even psychosomatic). I doubt the low levels of levonorgestrel (in the femtograms I believe) are the culprit, but perhaps her body is developing an autoimmune response to the devise itself.
Thanks in advance for your help - just looking for new ideas.
Italiangotess - I too have these symptoms and am outraged that they are marketing this product still with these kind of symptoms. I have severe itching and it creates a hive rash that is unbarable. I went to my doctors and they said it was a bacterial infection and perscribed me medication that made little diffrence. It seems to reaccur and never completely go away. It starts in the vaginal area and begins to spread to my ears, eyes, nose, stomach, face...everywhere. I didnt even know this could be caused by my mirana. I never thought to put 2 and 2 together until i came across these post so thank you and needless to say i am having it taken out!!!!!!!There will be a lawsuit for this conceptive too. no surprise.....I regret getting the mirana and wouldnt recomend it to anyone. The itching is so severe i am itching my skin completely raw and causing scars. I also have been expieriencing severe migrains(that ive never had before). I got the mirana 1/2009 and it is now 3/2011. I'd rather have poison ivy!
Nikkidarnell02 - Thank you guys so much for these postings. I've had mirena for 1 year and for the last couple months my arms and legs have been aching. I read all the side effects and figured I must have arthritis as well. Recently I purchased Proactiv for the terrible acne on my cheeks. Well, since I haven't had sex in over six months I think I will have it removed as well. Once again thanks for everyones input.
Heceta - Several years before having the Mirena inserted, I tried the Depo shot. Soon after, welts formed all over my body and I took on a Dr. Jekyll and Mr. Hyde personality. It was awful! I went back on a combination birth control pill. I decided to take the advice of my doctor and get an IUD. After getting the Mirena, the symptoms seemed to show up one at a time and, by the end of the year, the reason seemed obvious and I had them take the Mirena out. Most of the symptoms I had been experiencing lessened in intensity soon after the removal. The symptoms that went away included severe and constant bloating, loss of libido, agitation, painful breasts, weight gain of 20 pounds, depression, and moodiness. Some symptoms I am still experiencing include itchiness, breakouts on neck, face, right arm and left thigh, oily skin, stiff and achy joints, fatigue, cold intolerance, forgetfulness, crazy menstrual cycles, and hair loss. I lost some weight but am now having a hard time losing more. Recently, I started noticing tightness in my throat and swelling in my pinky joint. I have also been diagnosed for the first time with BV.
I discussed my issues with my former gynecologist and he said that all women bloat but it is odd that many of my symptoms went away after having it taken out. Now, I go to several specialists including a dermatologist and an orthopaedist. The dermatologist told me that she has had patients with the same issues and they were all on Mirena. My new gynecologist recently performed an ablation due to my heavy periods. I looked up some information and found that Mirena and Depo are both progestin-only products and there are androgenic effects associated with them. It appears that my symptoms are similar to those associated with hyperthyroidism so I wonder I’ve developed an autoimmune disorder from Mirena. If our bodies are always trying to fight off allergens, can it compromise our autoimmune systems so severely that we develop other issues?
Andyandsami@gmail.com - anyone who had hives from mirena-can you please please please tell me how long it took for the hives to go away?? I had mine removed a week and half ago and have yet to have total relief-just a little!
Minty262 - I had the Mirena in for about 2 months or so, I'm 26 and have never been pregnant. During the first 2 weeks I experienced intense dizziness, so bad I went back to my OBGYN and she chalked it up to something besides the Mirena. The dizziness did subside, so I thought maybe it was just my body adjusting to the newness of it all in my system. Shortly after I developed joint pain like you wouldn't believe, and I am a healthy person, who regularly runs long distances and lifts weights. I was so exhausted, I came home from work every day and napped for 2 hours, and slept through the night - I woke up STILL feeling tired even with all the sleep. I finally did some research when I could barely walk and started getting numbness and itchiness on my feet. I decided to get the Mirena out, I wasn't going to wait around for it to get better, or potentially worse. My obgyn did it happily, but believed my symptoms could be attributed to something else, I hope and have a feeling she is very wrong. I'm going to wait a few months for my body to straighten out to even worry about BC.
I think the Mirena may be great for some women, but to ignore obvious similar symptoms of so many others is unethical and irresponsible of both Bayer and the medical community.
My symptoms included
Acne
Joint and Muscle Pain
Dizziness
Extreme Fatigue
Numbness and itchiness
Eye Twitching
Some could have been related to the anxiety I had from the whole experience, but whatever - here's hoping they all go away.
Anni - Dear girls thank you so much for sharing your experiences. Mirena was offered to me as the perfectly safe answer to my contraceptive issues - I was going to take my trustworthy gp's word that this was a real revolution in contraception, and people were only saying great things about it. I am shaking here, thinking of the suffering you are going through, and the obstinate refusal of health professionals to admit it is Mirena to blame. I hope your bodies quickly recover balance - check out eating 'primal' - that is cutting out a lot of sugars. there's some great websites to go to. my partner has cured his arthiritis this way. Love Anni
Kenzie702 - I had the mirena iud for almost 4 years and I have gained 25 pounds, have had major mood swings and a huge loss of energy. I am tired all the time to the point that some times, i feel as if I am a robot. While I had the Mirena, I had irregular pap smears and had to have blood work and many other tests done to try to determine the cause of all the pain. I had my IUD taken out on Wendesday and since, I have broken out in hives all over my stomach, back and neck. The removal was not painful for me and went rather well. Has anyone else suffered from hives after the removal? My doctor believes that it is a way for my body to adjust after the loss of the hormones from the IUD. I just want to be normal again and continue to live my life without the mood swings, groggyness and pain. How long before I become me again?
Hb in Ca - I have had Mirena for 6 months. I had a really bad hives breakout that wa all over my body. I tried removing all possible variables from my diet and any environmental things like new detergents, soaps, etc from my daily routine. I had intense itching all over my back, arms and thighs. It lasted for two months. I called my OBGYN, as a last result and read lots of blogs about Mirena and all-over body hives. He did say that two other patients had rashes all over and the only way to know for sure whether it was the Mirena, would be to take it out. I decided to wait it out and go on some very strong prescription antihistamines the my general Dr. Prescribed along with a week of Prednisone.
I'm happy to report that my hives went away and they haven't been back for almost a month now. I'm just glad I didn't have to take my Mirena out.
I know a lot of people like me were looking for answers and updates like I was to confirm what finally resolved the problem. So I wanted to come back and post my comments here in case it helps any of you figure out what to do.
Long story, short...My hives are gone and I didn't have to take mine out. Good luck ladies. Hope you figure out your health issues a well.
Mirenaintolerant - Holy Cow batman! I had mine inserted 2 days ago and am freaking out..I have Fibromyalgia and in pain already but since it was was inserted my hips, knees, leg and well just every whre is way worse...calling my MD and having it removed Monday morning...I am itchy already tooa nd suffer hair loss and truly can't stabd to gain any weight because I am so inactive already and I have felt like crying since Thursday night right after it was installed. Clearly based on the above and all the other sirtes out there about how bad Mirena is how can they still be offering it to anyone my goodness...I also have been feeling uber bloated and suffering major cramps that shoot up and and down this is insanity...I do not care who thinks I am nuts it is going...probably setting a record only in for 4 day's..but just no way I have a headache since I woke up at 2 AM Friday morning and keep in mind I where 150 Fentanyl pain patch and take Hydromorphone for pain already no way I should be suffering like this...man Doctors are really all about the money pushing these things even though it appears it is problem fpor then 1 in 1000 based on the above...Good Luck to All and bless you!
Good26 - Mirenaintolerant...sounds like you may want to have your thyroid checked. It "IS" normal to have some horrible discomfort after insertion. What they called a little discomfort to me was almost as bad as childbirth! However, I lost half of my hair a few months ago due to my thyroid counts being way off and serious weight loss. You may have the opposite as an under active thyroid. Two days may not be enough time for your body to get used to it. I do have several friends that love theirs. It just wasn't right for me.
Mirenaintolerant - Good26, thank you very much, however because I keep loosing and gaining and already have hair loss by the handfuls...my Thyroid has been checked...so I just think it may not be for me as well and yes...this day 3.5 and it is still hurting and yes quite like childbirthing...low back pain, hip pain and tummy cramps...I hav enot been able to eat since Friday..as I feel like I have eaten a whole trukey...so its time to get it removed and as I am not using it for birth control it can go and i will just stay on the iron meds...I take so many meds already, I was just trying to omit a few...however the pain and discomfort is not worth it and really if you factor in the serious amount of pain meds I am on...I should not be feeling anything...and man oh man this is torture..not to mention my Mother dies 2 years ago of matastized breast cancer which originated from hormone meds she was on for menopause...so my bad should have done more reseach before allowing them to insert espeically considering I paid for the stupid thing..its crazy..again thank you so very much for your kind words, however I just can't go on suffering...as I suffer already with the Fibro, O/A, DDD and depression..its gotta go!
Take care of yourself!
Kmckeough - OK, well this makes sense. I had my Mirena inserted about 2 months ago. Since then, I've had swelling in my face and a hive-like rash. My knees are really sore - I am a runner and have never had issues with my knees. I've not been running in months now but they really hurt and crack all the time when either going from a sitting to standing position or vice-versa. I've had pins and needles in one of my fingers. Also, a couple of days ago, I started getting pain in my leg (hip, calf) and foot. It's now switched to the other leg/foot. I think I will contact my doctor. I'm afraid that if I leave it in much longer, the conditions will become irreversable.
Kcarter - I am so very thankful for these post!! I had the Mirena put in October of 2009 and started having the vaginal itching shortly after. I went to the doctor countless times and it's always the same. ( Possible yeast infection) they always say. I have been to several different clinics and doctors and ask if it could possibly be the Mirena since that is the only other change in my lifestyle and they all say (oh, the chances are very rare and disregard what I have ask. 2 1/2 years later I finally started to do some reaserch and found these posts. Thank God!! I now not only have the horrible vaginal itching but have had servere hip and pelvis pain, and the itching has spread to my stomach and back, my hair also comes out like crazy. I've read enough to know that my feelings were right and i'm having this thing removed this week. Maybe then my skin can go back to normal and I won't be so ashamed to let my husband see my body due to the nasty looking raw rashes all over me. Good luck everyone!
Hailey56 - Miena destroyed my 22 yr old daughters life. She had horrible allergy attacks after having the Mirena for a year and a half or so, suddenly became allergic to everything and/or for no reason would have attacks, she had to use her epi-pen and go the hospital several times a week - over 30 times - because of the allergic reactions, before we figured out that it was the Mirena. She couldn't breathe, broke out in hives, horrible itching all over her body, passing out and throat swelling etc. The anaphylaxis episodes have went away for the most part since having it removed but she continues to suffer from extreme neuralgia in her hands/legs/feet/jaw, it is so painful nothing seems to help. Her health is so bad, it has ruined her life. We have been to every doctor, specialist, and had every test known to man. I have never seen another person suffer the way she has in the last 2 years, and it's all because of MIRENA, no doubt about it.
Good26 - HAILEY56!!! Have your daughter cut out all of the propylene glycol in her life! It is in everything and does not show up on allergy tests because it is not an allergy, it is a sensitivity. It takes a while for your body to stop reacting to it. All natural foods, all natural products. Burts bees are pretty good and Jason's tea tree body soap work great. Tom's all natural toothpaste and deoderant. I had huge swollen painful welts all over my body, if I sat on a hard chair or my socks or pants pushed on my skin, they would swell up and itch and burn. Ponytails would cause bumps and lumps all over my head. Does this sound like what she is going through? It is terrifying and debilitating, it took me 3-6 months to get back my physical and mental health and doctors did not help. Propylene glycol is in all medicines! Steroids were the only thing that helped but those are dangerous too!
Kmckeough - Just wanted to update my post. I had my mirena inserted near the end of January, 2012. I started having an 'allergic' -like reaction within days. Then, I had many lupus-like symptons, (there's even a condition called 'mirena induced lupus'). I had the doctor remove the mirena in early April. The mirena had been in for 9 weeks or so. Immediately, the swelling/rash in my face went away. The hives went away. The pin and needles in my fingers went away. The lower back pain went away. The only symptom(s) remaining were pain in my ankles and knees. Well, after a month or so, (I'm now 5 weeks post-mirena), that pain is gone, too. I did take some detox supplements so I'm sure that helped. I had read that the joint pain takes a long time to dissipate - it did take longer than other symptoms. But, now I feel normal. As for my periods, well, we'll see what happens. I had the mirena inserted because of terrible menstrual cramping and very heavy bleeding. When the doc removed my mirena, I had bleeding, (sometimes very heavy) for about 3 weeks. It eventually went away. I seriously had every symptom of lupus. Now, nothing. Good luck to you all!
Tomopteris - Hey all- I am so happy that I found this. I am 20 years old, have never had children or have been pregnant, and when I told my doctor I was going to hitchhike across europe and couldnt take pills, he recommended the mirana. I got my Mirena put in January of 2011. After a week or so of spotting, my periods stopped all together. I have always had light periods, so I did not think it was too strange for them to go away completely. I had no problems and all was good for about 7 months. Then... the rash started. First on my feet. I was hitchhiking through Europe and as it got worse, I thought maybe it was bugs, maybe it was the water, but never did I think it was my birth control. By october 2011 I had horrible itching on my breasts, arms (worst on the arms!), legs, labia, and tiny blisters on my hands and feet. I felt like I had bugs, not to mention I had suddenly started to have mood swings, lower sex drive, and horrible headaches. I saw a doctor in Poland who assumed it was scabies because i had a rash on my hands. It wasnt scabies. I saw a doctor in Serbia who said I was allergic to bread (which I DID randomly develop an allergy to wheat, but now its gone). It wasnt the bread. another doctor said it was possible eczema but she was unsure due to the nature of the hives and the other symptoms. On may of this year I began to have full on allergic attacks along with randomly reacting to latex, nylon, adhesive, and even tomatoes. I finally got in to see a dermatologist and he was a bit puzzled by everything going on and had even mentions a possibility of my body reacting in shock to CANCER when it dawned on me... ITS THE MIRANA. Today I began researching and finding this thread with sooooo many similar stories and for once I have HOPE! I have another appointment next Thursday and I plan to get my mirana out as soon as possible. THANK YOU ALL SO MUCH.
Mirenaskin - I removed mirena 4 days ago and am so afraid to stop taking prednisone because my rash gets worse at night still. How long does it take for the itch/hives to subside after removal? Anyone know?
Jammon - I am so overwhelmed by all the post i have read in the last 10 mins. I had may mirena inserted in feb of 2011. Since day one actually on the way home from dr. office i started expierencing itching in the vaginal area. Needless to say I thought it was due to the newness of the IUD and that it would take time to get use to!! Well here we are 10 months later I have Dr.s scratching thier heads. I keep a yeast infection. I have been perscricbed the strongest of meds with no relief. I am driving my family crazy. I have consent body aches, headaches, fatigue, LOSS OF HAIR, NO SEX DRIVE, itchy everything. I feel like I have bugs crawling in my scalp. Needless to say My OB Dr. is determined its not from my IUD...but what else could it be. All these symptoms started the day I had this IUD placed..I would much rather birth children than deal with all these symptoms....
So I am getting a second opinion and changing Dr.s and having this IUD REMOVED asap.! Then I will be scheduled to have my tubes tied! Never in my life have I expierneced pure HELL...Good Luck to all who are suffering! Get second opinions and spread the word that the MIRENA is a life altering, unessesary way of life!! Thanks for all the positive feedback that has eased my mind. I know now that I am not going crazy...its real..THANKS AGAIN!
Heceta - Jammon, I am so glad you realize that you are not going crazy. My physician didn't think it was the Mirena either. Getting it out sooner than later will make you feel better. I was experiencing severe bloating (like carrying a bowling ball around). This was alleviated soon after having the Mirena removed. I also experienced the symptoms you described. It scares me to think that some women will experience autoimmune issues if they react to the IUD this way and don't take it out. May your health return to normal!
Mirenaskin - I found out it was silicone poisoning! Take it out you are allergic. It will remain in your blood stream for about two weeks. Do not get on prednisone or allergy medication it will only destroy your immune system more.The only thing that helped me was to go on a strict diet that will quickly repair your drained adrenal glands. Your body is sending out antibodies that are attacking itself. Mainly your largest organ, your precious skin and its receptors. Wikipedia or search, how to repair adrenal glands. I also got an skin antibiotic from my dermatologist- that seemed to clear the body acne.
Treacle1018 - itchy@trow- i have had a merina in july- its my third month now, i thought its judt me or all in my head. all the itching and dizziness is present to me sonce day two of insertion. my husband blames me of not drinking pletny of fluid, which i do anyway. he hates nad disgust on me itching all over.. i had a before flawless skin before.now ive have rashes alll around my body and scratching is unstopable. i went bacl to my gp and complained, she didnt believe me at all... i ask her to take the mirena out, but she idnt think that dizzines is a side effect. im going back next week to my gp after what i read on here, im not taking chances of ruining my skin...and my marraige. also my husband dont want to have sex with me anymore coz he feels something sticking inside me! i wonder how we can avtually sue the merina company!
Djsimpsonblog - Hey ladies, I have had my Mirena out for almost 2 months now after having it in for just under 2 years. The itching all over my body was unbearable and still is! I still get dizzy and have had terrible anxiety. I get numbness from my elbows to my hands, back of knees to toes with swelling too and now numbness in my face.I had it removed because of the itching, but since having it removed it hasn't subsided and all this tingling and numbness started. My doctors all think I'm crazy, but you have confirmed my gut instinct. They tried to put me on anxiety meds and depression meds, but They don't work. Don't let anyone tell you it's not the Mirena. I get itching mostly at night and worse when I get hot. Has anyone found any relief in treatments or when does it subside?? I am so afraid it irreversible. My skin is so thin, I get allergic to everything that touches me. Please any past Mirena survivors reply to us!! Even if its not good news. To help others....I take a Zertec at night for the itching, which seems to help...and help me sleep. I now know all Mirena survivors are vitamin D deficient, so I take 4000 units of vitamin D, 1000 units of B12 and a multi vitamin, which has helped with the fatigue and dizziness. This Mirena has ruined my life. I felt great the week after getting it removed with my sex life returning, then subsided about a week later. I hit my wall of anxiety, itching, dizziness, numbness, insomnia, and constant fatigue at about 6 weeks after being removed. I haven't recovered yet. Please anyone give us information on how long this will last? I believe symptoms are worse depending on how long you had it in. Does anyone think that too?
Hailey56 - 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, singular, hydroxizine, benadryl, and zantac (which is a stomach medicine but also a histamine blocker and very important to prevent allergy attacks) and eventually she finally quit having the allergic reactions post mirena removal and on this medication. Now she is on just a few allergy meds but rarely has attacks. She has to be very careful of her environment though, during all of this she went gluten free which really helped we believe, and also started using fragrance free products such as detergent etc, uses air purifier, etc. There is something about the mirena can destroy a women's immune system and make them allergic to things they've never been allergic to before. Go see an allergy doctor as soon as possible and though they probably won't admit it's the mirena causing this, they should be able to help with the itching. This is happening to thousands of women worldwide, and causing so many other horrible side effects! It does get better though with time, so don't lose hope and keep fighting. You are not alone! Best wishes, hailey
Mirenaskin - Ah I have had mine out for three months now. I instantly got a depo shot with removal of mirena and everything cleared up 3 weeks after removal with a healthy raw food diet and bactllerim for acne and any possible infection going on inside my body. My immunologist doctor said I had lichon planus an immune disorder, or possibly an allergy to silicone. Silicone poisoning. now everything like I said, cleared up 3-4 weeks after removal now 2 months later I am due for another depo,, and I have a cold... I have hives again.... first time ever since. Its hormonal or immune related, but I'm sick of it.
Heceta - Depo and the Mirena are synthetic progesterone-only contraceptives. Perhaps you are having a reaction to that. I was on Depo and experienced hives, weight gain, mood swings, bloating, etc, etc. I then used the Mirena and all heck broke loose! I've read where the Mirena does not have system effects on the body but I am convinced it does. I recommend reading up on synthetic progesterone to see if you are having similar reactions. If so, perhaps you could try another type of contraceptive. There are those which come in a combination form. Any drug is going to have side effects but we, as individuals, need to figure out what we can stand and what we can't. I could not deal with the severe reactions I had to Depo and the Mirena so I decided to get the Essure. This is a permanent method so you have to be at a point where you aren't having more children. Hope this helps.
Djsimpsonblog - I just sarted my period for the first time, 2 month post Mirena. I had one full nifht of no itching in over 6 months, then Bam...it was back again a day later! I am at my whits end with the itching. It bring anxiety and insomnia and not to mention ruin my sex life in my marriage. Who feels sexy while you feel like bugs are crawling all over you? I have been to allergist and dermatologists and nothing helps. I had severe allergic reactions to allergy shots, so had to quit. I have tried countless creams from my dermatologist and nothing helped. Not only did they not work, they seemed to make the itching worse. The only thing that "helps" is a cool shower and a Zertec. Even then, it doesn't disappear, its just less faint. I can't sleep because of this. I swell extremely bad at night too in hands and feet. I just wen back to my general doctor who took my blood...all was perfect except I was extremely vitamin D deficient. She said that vitamin D is one of those vitamins that can make yur body do some weird things. She gave me a prescription strength, vitamin D, that I take once a week for 8 weeks. I just started it yesterday, so will let you knowif it works and if she is right...
Djsimpsonblog - Well, I wanted to write and let you know the update with the prescription vitamin D, given to me by my general doctor...I have been on it for a week now and saw immediate results the next day. The itching has stopped for the majority which in return helps me sleep. I've had one small attack, which comes if I get overheated, but it went away quickly with cool air and lots of water. I am due for another pill in 2 days, I take one 50,000 units as 1 pill a week. I can tell I'm due though, so might take it the night before instead. Try vitamin D! It works and hopefully my body will start producing it's own soon!
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