Here is my Mirena story—What I finally posted on forums when I was struggling to find answers. I posted this on October 15, 2010....
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Hey ladies,
I'm finally writing all of this down because I know how desperately I've been looking for any sort of answer regarding what in the WORLD is happening to my body due to the Mirena. I apologize in advance for the long post, but I figure it may give some woman out there some information that she is searching for. If not, at least it is just one more post to show the world that we are not crazy here. We are very sick...and we are desperately trying to get better.
I was actually one of those women who had the Mirena put in after the birth of my first child and had no problems. I told everyone I knew how wonderful and convenient this form of birth control was. I used it, it worked, we decided to have another baby, I took it out, got pregnant the next cycle....everything seemed flawless. After the birth of my son, I had it inserted again at my 6 week post partum appointment. Within two months of insertion, my body started falling apart. Unfortunately, since I didn't have issues the first time, I didn't have it removed because I never made the connection to the Mirena until it was in for 17 months. That was when I started seeing thousands of posts of women who were suffering just like me...and reading their symptoms made me feel like I was reading my own journal. I literally cried when it hit me that the Mirena was the cause. Yes, I cried because I was angry--but I also cried because I finally felt like I had a real answer...a reason WHY I was falling apart. I finally knew that I wasn't just going crazy.
Here are my symptoms:
ANXIETY ATTACKS (I NEVER dealt with anxiety before, and suddenly I was dealing with them constantly--horrible ones that would literally take me to the ground)
LOWER BACK/HIP PAIN (I was going to the chiropractor twice a week and it didn't help at all)
BLURRY VISION (I have had it confirmed by my Optometrist that I have lost over 60% of my vision in my right eye in the past 12 months)
OVERALL "FOGGINESS" OF THE BRAIN--All the time. Feels like I'm half out of it and have to concentrate so hard on everything.
ABDOMINAL PAIN (I went in to my OB, and they found pockets of blood in my abdomen--they have since reabsorbed)
WEIRD "PATCHY" GOOSEBUMPS--This is a weird effect that I deal with multiple times per day. I get these weird patches of goose bumps...like in patterns on one arm, or only my right leg will be covered and not my left, etc. Only lasts for a few seconds, but happens constantly.
HEARTBEAT ISSUES--I've had to go have testing run because my heart rate starts jumping all over the place
FEELING LIKE I'M NOT GETTING IN ENOUGH OXYGEN WHEN I BREATHE--Sounds weird, but that is the only way that I can explain. I sometimes "huff" a lot to pull in more air.
WEAK HANDS--Out of nowhere, everything from my elbows down to my fingertips get so weak that I have to concentrate with everything I have to simply hold a glass or type a word correctly.
AWFUL MOOD SWINGS--I went from the most relaxed person who enjoyed being out at the park with my kids to a woman who was too overwhelmed to do ANYTHING. Doing laundry was too overwhelming. Taking my kids outside was too overwhelming. Taking a SHOWER--for goodness sakes--was sometimes too overwhelming. So, I became this "shell" of a woman who felt so sick and counted down the hours until I could just go to bed. I would yell at my daughter for stupid things. I knew it was me going overboard with my reaction, and yet I could do NOTHING to stop it.
EXTREME AND CONSTANT FATIGUE--I'm talking so tired all the time that daily life seemed almost impossible.
INSOMNIA--That's a strange one because, like I said, I had such awful fatigue that you would think that I would fall asleep at a moment's notice. Nope. Can't even tell you the last time I slept through the night without problems.
I went months not knowing what was wrong. I started off finding other "reasons":
"I have two kids three and under, and I'm just tired."
"My baby was born with a medical condition that we didn't know much about; he's in a lot of therapy...I'm just really stressed out."
"I'm getting my Master's degree now on top of everything. It's just a lot to handle."
Does this sound familiar, ladies?
BUT....as time went on, my side effects got worse and worse...and it seemed like one body system at a time was just shutting down....and I was POWERLESS to stop it. My body was shutting down...my mind was shutting down....my emotions were shutting down..... I felt it happening, and I was terrified because I had no idea why. Like most of you, I kept quiet about it for the first several months because I was EMBARRASSED. Who wants to admit out loud to your loved one--every day--that you are too overwhelmed to load the dishwasher, or you yelled at your three year old because she dropped her sippy cup on the floor, or you put your kids in front of the television for an hour so that you could go to the other room and cry for no apparent reason?
Or...even worse...who wants to have to say out loud that you are afraid that you are losing your mind? Yep....that was me. I sincerely thought that I was slowly going crazy, and I couldn't do anything about it. But, in true "woman of the household" fashion, I kept it in because to verbalize it made it true...and made me sound weak. THAT was unacceptable--and far too scary to do.
I was in a horrible place. I'm sure I sounded like a hypochondriac, I KNOW I had to seem like the world's laziest woman when my husband would come home and I had done hardly ANYTHING regarding the home. I KNEW how it looked.... I KNEW that I wanted to be better and do all of these things....but I also knew that I simply COULDN'T--and worse, I had no idea why.
Here is where I'm at now--I am almost three months post removal, and I've been to the doctor most recently to address the panic attacks and the weakness in my hands. He, of course, has referred me to a neurologist to rule out MS, ALS, etc.... After reading all of the other posts, I'm sure all tests will come back as normal (just as all my blood work has), but I haven't been to the neurologist yet. I'll let you know. He also gave me a bottle of 10 Xanax pills so that I can take one if I start having an attack. He thinks this could all be anxiety. I know differently. Not only have I never dealt with anxiety before this (and now it is almost debilitating at times), but my last attack hit me WHEN I WAS ASLEEP. That's right, I woke out of a dead sleep and couldn't breathe. Something is PHYSICALLY doing it to my body.
Just yesterday, I was at the doctor to demand that he check the silicone levels in my blood. I have seen far too many posts from women who are suffering from silicone poisoning because of the Mirena. When I requested the test, my doctor looked at me like I had three heads. "I've been a doctor for many years, and I've NEVER run a silicon test. This test is pointless." My response, "Well, now you have--and it isn't pointless to me."
He continued to talk to me about how it probably won't be covered by my insurance because it isn't part of his "treatment". Okay, fine. I'll figure it out. Run the test.
Then, he proceeded to say, "You know, even if you are right and it is silicone poisoning, there is nothing that you can do about it, so it seems unnecessary to do a test for something you can't change anyway. My answer, "Maybe I can't take any medicine for it...but I'll KNOW. I'll FINALLY have an answer to why I'm so sick. That is worth the WORLD to me at this point. I've been scrambling for answers for over a year, and if this blood test finally gives me the WHY that I've been searching for, it is worth it to me." (Plus, if there ever is a lawsuit...I want that level noted in my file).
By what I've learned so far, it looks like most of the women who share my same symptoms have any or all of the following things happen to their body:
1. Their body is thrown into Estrogen Dominance, complete loss or progesterone or some extreme hormonal imbalance. This device provided all of our progestin for us, so our estrogen kicked up to meet it. Then, the IUD was suddenly taken out, the estrogen is still pumping like mad, but our bodies haven't figured out how to start it's own progesterone again yet.
2. Silicone poisoning--Apparently, part of the IUD is a silicone compound. Yes, we were told that it couldn't enter our bloodstream. I don't buy it. I know a girl that had hers tested (She has even posted here I believe) whose silicone levels were three times over the abnormal limit. THREE TIMES.
3. If there was a malfunction of the device...especially a malfunction enough to have the silicone "holding cell" of the Mirena break apart and enter our bloodstreams, that--according to an Internal Medicine Specialist--means that the hormones that were in that cell all came out at once. That's right, ladies--that is FIVE YEARS worth of hormones that spilled into our bodies at one time. Knowing that, how could we NOT be on the edge of falling apart? Did you know that, when the Mirena is perfectly operational, that it put in our bodies the equivalent of TWO progestin pills A DAY????? (If I had known that, I never would have had it inserted in the first place) Yep, and that is when it was working CORRECTLY. Imagine now, FIVE YEARS of it spilling into our systems at once when it doesn't.
So, there is a possibility that, if the silicone tests come back positive, that we not only have five years worth of hormones in our system that our bodies are frantically trying to figure out how to deal with, but we also have our blood at a toxic level. Think about it. If something is wrong with your blood, OF COURSE your ENTIRE body will eventually be affected--your blood is pumping through all of it....your brain, your heart, your spine....
I am not a doctor. I don't claim to be. But, I've sure seen my share of them lately, and I've spent hours upon hours gaining information from other women who have gone or are going through the same suffering that we are now. They all seem to have the above issues in common, and that is why I think it is important to put them all together and post this. I'm trying to post something that was what I was looking for during one of my many desperate and fear-filled searches for possible answers. I'm not trying to give a diagnosis to anyone. I'm simply giving information for each woman to weigh against her own symptoms and decide what to do to start fighting for her life back. Think about what tests to run and go make it happen.
It angers me to think that the only reason I even changed from the pill to the Mirena was because I was a nursing mother, and my OB told me how much "safer" the Mirena was than the pill because it is localized to the uterus, and therefore, nothing entered the bloodstream or milk supply to the baby. What new mother wouldn't make that decision when told that it is the safer choice for her newborn? Most of the time now, though, I try to move past as much anger as I can that dwells on the past--because I can't go back and change what has happened to me. I am now trying to focus that energy on getting better. I have to admit, I have my strong days and my weak days....but I'm fighting.
Now that I am three months post removal, I'll try to explain where I'm at. The blurry vision and foggy brain are constant and consistent--even now. The anxiety attacks, back pain, and weak hands come and go and don't seem to follow any sort of pattern. However, I do notice a definite improvement on the amount of time I deal with a sore back. It used to be all the time. Now, I have good days and bad days. I definitely notice a VAST improvement in my mood. I'm so thankful to say that I am having some good days again--days where I find myself singing while I'm wiping the kitchen counter...days where I want to have a tea party with my kids. In that way, I feel like I am starting to get ME back...slowly, but she is in there, and I'm going to keep trying to get her out. One day is good...the next is bad...I never know. I may never be 100% again as far as my physical health--I simply don't know the answer to that yet. I do know this, though: I'm NOT going to stop fighting to get my life back.
Here's what I'm taking now: (To current blog readers--This is NOT the detox...this is what I was trying at that time....)
--I only take a Xanax if I need it. Anxiety is awful.
--I take a B Complex Vitamin every morning
--Evening Primrose Oil supplement daily
--One Biotin supplement daily (my hair never fell out like many of yours did, but it did get coarse and brittle...I thought it was our water softener for the longest time! :-)
--I also take a supplement (it's a powder that you mix as a tea) called "Natural Calm". It is a Calcium/Magnesium compound that I really believe is a large reason why my back pain is feeling so much better. It could also be helping with the anxiety according to the claims.
I'm also, depending on what the silicone test reveals, am planning on doing some sort of detox for my system. I have also found an herbalist (actually, my mother did) who has some herbal oil supplements of some sort that are supposedly supposed to help connect with any sort of petroleum-based toxin in the blood and help you excrete it. Worth a shot, right? If I'm still struggling, I'm evening considering trying acupuncture--seems like a lot of women out there got some relief from it. I'm just trying other things first since acupuncture is not covered my insurance and can tend to get expensive. However, I'm willing to try anything at this point. I even joked to my husband that I would wrap my head in a cow placenta for two weeks if it would give me my life back. ;-)
I also take an all natural herbal energy supplement (four per day) to help me out with my fatigue. It helps me out a lot.
I think that's it. I will keep you all updated on what I find out, and know that I am praying for ALL of you. I know, all too well, the hell that you are going through. I'm right there with you--but I'm going to beat this thing...and so are you.
Blessings to you all.
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Well, there you go, everyone. That's my story. I'll be back with more of my past posts soon....
I'm a new reader and just posted my story on the AboutLawSuits site. Your symptoms are so much like mine it's scary. I'd never had an anxiety attack until Mirena. Also, it's very interesting that you said INSOMNIA... I've had weeks where I would be up for 36+ hours at a time. I just thought it was a side effect of the coffee habit I picked up to combat the drowsiness on a daily basis.
ReplyDeleteThank you so much for helping me feel "sane".
Of course you are SANE....we all are. It's scary how much this little device makes you doubt that for awhile. Yes, the insomnia was TERRIBLE. I would just sit in bed and cry...just begging to fall asleep for an hour. After the detox, I was finally sleeping normally again. Blessings to you, and please keep me updated!
ReplyDeletewhat were you taking the evening primrose oil for? im curious cause i was once prescribed that by an herbal doctor to regulate my periods, and so when i had the mirena removed i tried it again cause i wasnt having periods (and im still not its been over a year and a half since removal) but it didnt work all it helped with was the terrible mood swings which i still suffer from.
ReplyDeleteHi Jen. I was taking the Evening Primrose Oil because I was td that it could help with my hormones and anxiety. As you can see in the post, I ended up doing a detox and a completely different set of supplements later because the Evening Primrose Oil, etc., just wasn't working for me.
ReplyDeleteIf you are looking for what to take, please refer to the supplements under "The Detox" post. That is what you need to do first....get those poisons out.
Please let me know how you are doing! Blessings.
i saw that too, i know that the evening primrose oil helps with many things, and i like it cause its all natural, in fact i just bought more to today cause my mood swings are horrible again. and ive had my mirena out for a year and a half already i dont know if theres anything left for a detox to take out of me
ReplyDeleteI think that you should try the detox...and I think that you should talk to Dr. J. about possibly trying the bio identical progesterone (oral). The Evenig Primrose did absolutely nothing for me, but doing the detoxing and then regulating my hormones changed everything.
ReplyDeleteI had a mirena put in 6 weeks post partum with my son and when he was about 3 months I started with the anxiety. then The pain in my back and legs. My vision started going. I now where glasses... My symptoms are so simalar to yours!!!! I am happy to say that I had my Mirena removed when he was around a year, so it has been about a year and a half... I am almost 100%... I still have a little anxiety every once and a while, Still days of extreme fatigue... But I feel like myself!!! I always thought that maybe it was my Mirena, but every doctor told me know it was anxiety!!! You want to believ your doctors, but I beleive noboby knows you like you know your self!!! TRUST YOUR INSTINCTS!!!! thanks for your post!!!!
ReplyDeleteAfter reading this full post I felt like, as you stated, I was reading my own journal. What really hit me was your talk about the dr. giving you Xanax for anxiety and running blood tests and MRI to rule out neurological issues when you had never had any anxiety in your life. I was there last year. Waking up out of a dead sleep unable to breathe fully, numb/tingly hands, face, and legs, shaking limbs, my body clenching up so tightly I would have to immediately go to the bathroom, feeling like I was so nauseous and dizzy that I might throw up or faint at the same time. It was unreal. I only took the Xanax a couple times because I didn't want to use it, but when I did, it helped me to fall off to sleep. Post removal I am dealing with the mood swings, the extreme anger about something ridiculous, or extreme sadness/depression, and thten I'll swing back to "normal" where I can interact with others. When all symptoms started I called my OB and asked if it could possibly be the Mirena I was reacting to that was placed the month prior. I was completely shot down and told to go to a reg. doc. because it was definately not the Mirena. Which I did and nothing was ever found. Now, post-removal, my OB refuses to help me because I no longer have Mirena in. It's like they KNOW that they will get their hands dirty and they play dumb and refuse to touch me with a 10 foot pole.
ReplyDeleteReading all of this has brought so much to light I had my second Mirena put in today. And I am experiencing Insomnia like never before and have found you all . Let me just say the world makes some sense again. I dont even know how long a blog it would be to describe want the first five years were like. I am ending the saga . Thank you so very much If I could cry I would!! Tears of Joy and relief
DeleteOMG I am 4 1/2 years in with the mirena and I have all of the same symtoms only I also feel pregnant for about 3wks now I have gaines aleast 20 pounds during this period. I have chronic leg pain tingling in the arms and lets not talk about the fatigue and tireness,but everytime I take a pregnancy test it comes up negative but this time for sure I am surely convinced that there is something in there.....I even tried to get my dictor to take it out a year ago but she was against it and said I should wait but for me the wait has been to long and is now about over. Thank you ladies for putting your stories out there u never know who you can help
ReplyDeleteOh Williesmom....don't get me started on the pregnancy symptoms. I forgot to put that in my post. I can't even BEGIN to tell you how many times I took pregnancy tests because I just KNEW I had to be pregnant. I had every pregnancy symptom in the book, and I even had that feeling like a baby was kicking! I guess it was just muscle spams. It happened ALL the time with that stupid thing.
DeleteAll of this rings so true for me as well!! I just got my second Mirena removed after over 10 years total time. I'm excited to finally be free of it and pray some of these symptoms go away before too long. I have been dealing with terrible fatigue, pregnancy symptoms numbness and tingling in my extremities weakness in my legs off and on to the point that I had an entire neurological workup done bc of suspicion of MS. The brain fog was interfering with my life and job and I also dealt with hairless. I didn't link any of it to the Mirena until recently.
DeleteI know this is so late but did your tingling and numbness go away? I’ve been having it for a week (I’m 5 weeks out from removal) I’m scared stiff. Neurologist is sending me for an MRI
DeleteHi everyone,
ReplyDeleteI am so sorry for everything you all have been through and wish the best of luck!! I have had the mirena for 7 months now,I decided to get it after trying many different pills and they all caused something (made me crazy, mean, depressed, bleed forever, or all of the above). Thankfully, none of these things have happened to me, that I noticed. I've always had back pain (I have been told that have an extra disc), I've had anxiety since my freshman year of high school, and haven't slept good since before pregnancy (my daughter is 26 months), and can't tell you the last time I felt like I had enough energy. Anyways, I got here by searching somethings about mirena. I'm quite worried because I've had it since mid november, and there has not been one change in my period, I have always had heavy 5-7 day periods. I don't know if that is something I should worry about or not but I was hoping you all could help.I still have bad cramps and upset stomach with my period. I always use overnight pads, most of the time a tampon with them. Lately, I have been gaining weight, having pregnancy symptoms like heartburn (I never had it until I was pregnant and then when my twin sister was), my stomach feels like somethings in there (that full bloated feeling), my hips, ankles, and knees hurt, I've even had dreams I was pregnant ( I did dream I was before I found out I was with my daughter, and when my cousin was- we're really close and our babies were born 6 weeks apart.) And I'm on my period so it's almost impossible to be pregnant but, these dreams are really making me worry, last week I dreamt that I was really far along and felt like my stomach was going to rip if it stretched the tiniest bit more, and that I was in labor, when I woke up, I could still feel it all and had to look to make sure lol. I'm sure these dreams sound crazy but, I promise it's true. Sorry to be so long, I feel like I'm out of options with birth control and dealing with heavy periods. I only feel crazy now around the time I'm on my period (either before,during,or after) so, that's a plus. Any advice or opinions will be greatly considered and appreciated!
Hello: I was once like you with the heavy cycles for about 9 days, and wearing overnight pads during the day. It was bad and then I started using the Nuva Ring. My cycles are very light for about 6 days and I wear a pantyliner. The Nuva Ring worked wonders for me. You put it in for 3 weeks and remove on the 4th week.
Deletehas anyone had tiny black metal looking specks coming out of their skin?
ReplyDeleteOh my gosh, YES! I just got my Mirena removed and they popped up worse than ever!
DeleteI'm having all of these symptoms and more, i believe it's the mirena plus metal allergy. does anyone know what kind of metal the threads are?
ReplyDeletethank you so much for your help
Just wondering if you were ever checked for pysudotumor cerebri, I was diagnosed with it after seeing the eye doctor for my vision loss. It is basically increase production of spinal fluid which gives you symptoms of headaches, vision loss, neck and back pain and multiple other symptoms. I believe the mirena caused me to get this because I started having the symptoms about 4 months after i had my mirena inserted and ptc is attributed to hormones and weight. They say other forms of birth control can cause this but that mirena won't because it is supposed to be localized to the uterus but I don't believe it for a second. I had my mirena removed and am now waiting to see if it makes a difference.
ReplyDeleteDid this make a difference for you?!
DeleteAm also having vision problems and am looking for a diagnosis. Should mention that I've been on hormonal birth controls for years, but only had symptoms a few weeks after getting mirena. Not sure if it's related to previous b/c or Mirena.
I am curious if the vision problems slowly resolve with time? I am struggling to find answers as to mine, I'm 2 months post removal and haven't noticed any progress yet!
DeleteDid your vision ever get back to normal?
DeleteI am so glad I found this blog! I got the Mirena about 6 months after having my twins in 2008. At first, it was fabulous. I'll admit I always was aware of the threads, and I'd sometimes feel a lot of cramping, like the IUD was moving when I was having a bowel movement. I thought it all was normal and ignored it. I also found my anxiety and depression worsening as well as my libido disappearing. I brought it up with both my primary doc and my OB/GYN and they attributed it to being a mom. I have had terrible back and hip pain the past two years, and those problems were attributed to my weight, but they didn't clear up even when I lost weight. I also have a tendency to have a lot of charlie horses and foot cramps and tingly hands and feet and recently was diagnosed with plantar fasciitis and ulnar neuropathy.
ReplyDeleteThen, I started having terrible headaches last summer right before my period (only had 1 or 2 a year). The headaches were so bad, I was worried I was having a stroke. I was bed ridden for days. This was also accompanied with pregnancy symptoms like nausea, hot flashes, vivid dreams, frequent urination, sore breasts, exhaustion...
I concluded it must be the Mirena and had it taken out a week ago. During the removal, they did a swab and found I had another bacterial infection (never once had one prior to the IUD). And I just got a call today saying I have a uterine infection (they did a culture of the Mirena and found E coli).
I am furious and scared and embarrassed. I cannot believe that this birth control could cause all these problems.
I'm so glad I found this! I have had Mirena in for 1 year today,,,I have been hospitalized on 3 separate occasions for panic/anxiety attacks that were so bad they had to give me Adavan. I have felt for the past week that I was going crazy, my head is foggy like I have a head cold, I can't concentrate, hot flashes, sweating palms, cramping...EVERYTHING YOU NAMED! I have blacked out so many times I have lost count. I am terrified that I will black out and injure or harm others. I don't remember anything. It a very high level of anxiety. NONE of this ever happened to me until after I got my Mirena. I have recently started having vivid horrible dreams...my sister says she has them too...she also has Mirena. I was sitting in the restuaunt tonight looking at my 2 yr old...her face kept blurring out of view. I kept thinking how much I loved her, I kept kissing and hugging her- so scared I wasn't ok. I said a prayer, and by the time I got home all I could think of was my Mirena. I started my research and came across so many people just like me! 'm making an appt. in the morning to have it removed!
ReplyDeleteI just cannot believe what Im reading
ReplyDeleteSorry guys sent it too quick
ReplyDeleteI have the mirena in since Dec 2010 a year n 3 mths after my daughter was born. Was fascinated with it n the no periods was fantastic.
I suffered some nausea for about 4 wks after insertion, n everything appeared fine.
During the past two years Ive had alot of lifd changes, home repocessed, relationship ending, house move n financial issues. Also dreadful anxiety. I would have been claustrophobic but this just seemed to spring from no where n get bad real fast. I went to my gp who prescribed plexapro, was ONE week on then n it went through the roof, cldnt drive go outside think straight etc.
I came off them, attended counselling n had some CBT. Nothing fully worked but did improve. People kept asking when did this all start! You were so outgoing carefree a pick myself up n dust myself off kind of girl.
It had been niggling that the insertion of my mirena n my issues were running at the same time, along with constant sore swollen breasts, which resulted in numereous pregnancy tests all neg.
Anyway last week I had a thing where a pain shot up the back of my head followed by a dizzy spell n a funny vision for a few secs. Really bothered me said it to gp cld it be mirena she said `ah no that wldnt do that` checked coil cldnt find strings had scan its still there just moved up a bit.
Anyway Im gna have it removed to see does it help with anxiety etc coz Im so sick of it.
Maybe it wnt make a diff but Im sure I have a feeling it will.
Ive no idea how theyre related or why no one thinks of it gps etc. This forum has confirmed what Ive been pushing to the back of my mind!
No harm getting it out for a while n see where I go from there x
Wow! I got the Mirena inserted in April 2011. I was always leery about getting it and should have researched beforehand. I trusted my OB though and since she said it wouldn't have any side effects I went ahead and got it. We had just had our third child and I'm horrible at remembering the pill. Big mistake from the beginning. I bled for months after. Horrible lower stomach pain and bloating. It was so bad that I couldn't even touch my lower abdomen. OB said it "could be" normal and checked position. Position was okay. There was pinching in my inner thigh area for several weeks. I should have had it removed right away but I convinced myself that I was going to get it out after I was done breastfeeding anyway. I noticed my milk supply dwindle down to nothing. Horrible anxiety. Horrible mood swings. It didn't really hit me that the mood thing was from the Mirena until around September 2011. The pinching and bleeding went away eventually after many weeks but I was one of the unlucky ones to actually get a period every month. Pinching and achy joints came every month around ovulation. I was never checked for cysts but I'm pretty sure I had them monthly. Or maybe I just felt the pain and then popping from ovulation? To this day, I still feel my pain in my ovaries around ovulation. Maybe I'm feeling them get full and then release? In October 2011, the string moved up inside. It was horrible! They scratched me going up and then coming back down. I asked about it and was told the stings could occasionally go back up and come back down and that it was normal. I had it taken out the first part of November. Very heavy bleeding followed and then the Mirena crash. I managed to get pregnant that same month with no complications. We weren't planning to get pregnant but I'm very thankful that the whole pregnancy went great. Fast forward to today...just got my first period back 2 weeks ago. Now I'm having that lovely hip pain and pinching again which I'm guessing is ovulation. I've been having it monthly since my little one was born but I just decided to search it today. Just amazes me how many women have had such a horrible experience with Mirena! I try to spread my experience with anyone asking that hasn't had it in the past (and even those who may have at one point). I'd hate to have someone regret the decision to get it because all they did was ask friends and were just giving the "it's convenient" response.
ReplyDeleteI'm so glad I found your blog!! For 2 years I suffered through so many symptoms and didn't connect any of them to the IUD until I started feeling phantom kicks and doing research. I didn't understand how I could diet, eat 1200 calories a day and STILL be gaining weight. I literally had to starve myself to lose weight. Worse, my tummy always looked like I was 6 months pregnant while I was slim everywhere else. My mood swings were horrible. I felt like I was on a roller coaster every day. Laughing one minute, crying the next. Then my periods started going crazy. I'd get 2 in one month, then the next would be late, the next would last for 10 days, and the next would last for 2. Then the flooding started, gushing blood flowing down my leg. Hip pain followed; crippling pain. 2 months in physio and it wasn't getting better - no one knew what was wrong. I was 35 and had a freaking CANE for 2 weeks. I was tired ALL THE TIME but harldy slept and when I did sleep I had nightmares, horrible nightmares. Then the depression started "what is wrong with me?" I would wondering... "what is WRONG??" and then I found hundreds or thousands of women like you and me and I realized it was the IUD. I counted back through my calendar and yep - isn't that odd - around 2 years ago, when I had my IUD put in, that's when my symptoms started. I just didn't link them up. I had no clue. No one ever told me that the IUD could cause this. Worse, when I brought it up at the dr. at the clinic she said "you're on the copper IUD so it can't be the reason for some of your symptoms".. when I mentioned Copper Poisioning, her whole face changed. She knew that I KNEW and that I was spitting mad. I had my IUD taken out 3 days ago and my bloading is already decreasing. I feel calmer already, happier. I know its a long road to recovery but your blog is going to be my touch point so that I don't lose focus. The whole point of this is to say THANK YOU SO MUCH for creating this blog. So that women, like me, don't feel like they are CRAZY anymore. We're not crazy. We're victims of a horrible illness brought on by the IUD. We aren't crazy and we aren't alone.
ReplyDeleteMy 5 years are up and I'm planning on getting my Mirena removed hopefully next week. I survived the entire 5 years with only irregular periods in the beginning and sometimes painful intercourse. I have gained weight that i can't seem to loose unfortunately. I got the Mirena because i have very painful periods and i don't want any more kids. I stopped having periods and i love it. I was almost tempted to get another Mirena once this is removed, but i think it's time i let my body get back to it's old self again. I know that could mean a Mirena Crash and painful periods again but I will get through it with a heating pad and pain meds. I have read many post and hope my body doesn't freak out after i have the device removed. I'm so sorry most of you guys have suffered so much because of the IUD. I pray things will indeed get better for you all.
ReplyDeleteThank you for this great blog!! I really know all these side effects... Tomorrow my nightmare will end - removal of Mirena - yeah! I will NEVER ignore any symptoms of any medication, NEVER ignore ME again. Greetings from Austria, Europe.
ReplyDeleteI like many of you didn't connect the dots until I started reading blogs such as this. My symptoms included: severe lower back pain, pain that would shoot down my leg, mood swings, anxiety, severe vaginal itching (I constantly felt as though I had a severe yeast infection even though all tests indicated that it wasn't yeast. My doctor prescribed me estrogen cream to treat the vaginal itching!! More hormones...just what I needed!), and worst of all, severe insomnia. Many nights I would be up all night long for 2 days straight. I lost 2 of my dearest friends this year due to my anxiety, and roller coaster moods. I didn't mean for it to happen, but I just wasn't myself and couldn't explain why. After the collapse of my friendships, I couldn't deal with all of the drama surrounding it and felt like my life was spiraling out of control. I am 33 years old and have never had, anxiety, insomnia, friend issues or drama like this in my life up until now. I had mine in for 11 months before I became so scared reading blogs like these that I removed it myself a few weeks ago. A few of my symptoms got better immediately (the itching went away right away!, but many of the other symptoms such as the insomnia, back pain, and anxiety are still there. I guess I'm just glad to hear that I'm not crazy. This has been one of the worst years of my life and even though it's been horrible, I'm glad to finally get some answers as to why I have been feeling like a completely different person! I hope and pray that I am able to get back to "myself" again soon. Thank you to everyone for sharing. It has brought me a great deal of comfort knowing I'm not alone in this!
ReplyDeleteYou are all life-savers! I have had the same problems and this plastic hunk of junk poison is getting an eviction notice from my uterus now that I know I'm not crazy.
ReplyDeleteI had my Mirena removed almost 2 weeks ago... after 4 years of suffering and not knowing what this iud could do to you (because the ob/gyn did not tell me the possible bad side effects... only the "good" about it...) Ive always had anxiety but never depression n anxiety to the point of thinking I had heart issues and had to be on many different anxiety meds until the Mirena..I would wake up w/a racing Heart every morning and have heart palpitations constantly..I can finally say they have calmed down and my heart no longer races all crazy upon awakening..I was not aware that Mirena had hormones because no one told me until I Read others' posts. overall I felt like complete crap for almost 4 years... getting the Mirena removed was one of the best things I ever did for my body..I have 2 little girls and I'd rather me and hubby have another than suffer for another 4 Years... it was hell !!!
ReplyDeletePlease take natural progesterone or use a progesterone cream!! This will help balance your hormone levels and reduce estrogen dominance.
ReplyDeleteWow just found this today! I have the same problems plus developed a type of eczema on my hands. I researched and am amazed that most of my problems are from the mirena needless to say I am making an appointment to take it out immediately!!! Thank you for all of your comments!
ReplyDeleteI am literally crying right now because, after reading all this I know I'm not crazy. I have had this iud for almost two years now and it's been Hell. Terrible anxiety, heart palpitations, mood swings and this awful eczema on my hands. Now I know it's got to be the Mirena and I'm calling my doctor first thing Monday morning!
ReplyDeleteI've struggled for two years over random symptoms - all similar to those described here. I had my mirena taken out two days ago and have felt incredible since. i'm nervous for the 'crash' and will look into the progesterone cream. good luck to all of you and please let the others who still need the truth find it and return to health.
ReplyDeletei have spent the lat year of my life losing my mind. I am getting my mirena out monday i am going through the worst panic attack of my life right now!
ReplyDeleteI've only just begun to have symptoms...16 months after my second IUD. I have a lot of the same symptoms and I've had several tests done but they've all come back normal. I have over 20 meds that the doctors have prescribed for anxiety, depression, migrains, etc and I'm physically drained. I don't sleep but I'm extremely tired...I feel like I've exhausted my options as my doctor says that I've had a ridiculous amount of medical attention for no reason at all. I'm scared and a physically, mentally, and spiritually weak. It's hard to function, it's hard to do anything. I've been healthy up until six months ago. Since then I've been to the doctor two to three times a week if not more just for the doctor to send me home with no answers. Twenty bucks an appointment gets pricey when you're going in to see several different doctors a week. Help, where do I start? I just want my life back.
ReplyDeleteThankyou for posting this. I just came from my GP as I asked her to take mine out as the extreme fatigue, mood swings etc are getting to me. She talked me into keeping it as she said the tiny amount of hormone it releases wouldn't do anything to me. I am sick of feeling this way. I have three boys under 5 and I am yelling at them for silly things I shouldn't be yelling for, im tired all the time, its a struggle to do anything, my mojo has gone.. My vision is also blurry and thought was just because im tired. After reading your post I am going back to get it out.
ReplyDeleteThanks for your story. I had a horrible experience as well and felt so alone other than looking online at others having similar difficulties. I got my Mirena in in April and I bled for three months straight but my doctor said not to worry and it can just be "wonky" for the first 3-6 months. Then it stopped and I just had random spotting and cramping but nothing too bad. Then in December I suddenly got blurry vision and double vision as well as painful joints. I looked online and saw that others had had this side effect. I brought it up to my doctors but none thought it was possible. They did 25 blood tests, urine tests, x-rays, MRI, and sent me to a neurologist, ophthalmologist, and rheumatoid arthritis doctor, but none of them could explain the vision and it was only getting worse, I couldn't drive or really function. I called to schedule getting it removed (they wanted to make me wait three weeks, but I pushed and got in 1 week later). Within 48 hours of removal my vision was back to normal, my joints are still pretty bad but hoping they return to normal as well. The doctors still think it is unrelated yet have no answers. I am pretty sure it was the Mirena.
ReplyDeleteYes its the mirena I have the same things happening and a year after removal still have the problem with blurred vision and joint pain.
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ReplyDeleteI really cannot believe what I am reading but I do so with deep gratitude. I have had the Mirena in now for around 6 months. Yesterday, I was doing some reasearch on mental health facilities in Australia because I have been "doing" anxiety for the past 3 years, however in the past 3 months I have seen a marked spike in anxiety attacks and GAD/SAD symptoms. Anyway I rang and spoke with the director of a particular health retreat and one of the first questions she asked me was what contraception I was on, specifically was it the Mirena?? I was gobsmaked at the very least to find out the direct connection between increased anxiety and general poor health and the Mirena. I usually do a lot of research due in part to a prior history with anxiety I am very mindful of taking any medication that may increase symptoms I can believe I missed this!!!! Today I made an appointment for next week to get the bloody thing out and I cant wait. Whilst I understand that it will not take away the anxiety from reading the posts on this blog it sounds very hopeful that it will reduce it.. But what really astounds me is that I have had other symptoms too that I would never consider being because of the mirena, such as tingling hands, weakness in my limbs, increased neck pain and failing vision!!!! My god!!! Bring on tuesday the 29th April is all I can say. Thank you to all of the wonderful woman who have shared their stories to assist others make informed decisions.
ReplyDeleteBe well everyone.
Wish I had read these posts before I chose to put merina into my body, I am only going on my third week and I have the worst anxiety and panic, I have random night sweats where I literally have to get up and change. I can't get warm I'm always cold and I feel like I'm having heart palpitations and my legs are achy and feel strange... I went to doc to get it removed because I know I just don't feel okay and she refused to take it out saying that it's not the merina it's me and I need to treat my anxiety :-( she asked me of I wanted to start taking pills and I said no I really believe it's the merina she said it def cannot be as the merina only releases minimal hormones into the body.. She said that I need to persevere with it and that was that I wanted to just cry I feel like I have this thing in me and there is no going back.. I have started to contemplate that maybe I am possible going insane and that it's not the merina! After reading all of the above I am back to believing it's the device I just want to get it removed I just don't understand why they said no! Now I have no idea what to do :-( I have also been awake for hours hence the time of writing this post... I'm so lost on how to get this thing removed!
ReplyDeleteI'm having my first baby in Nov and I'm scared to get the mirena put in after what should I do??
ReplyDeleteThese posts have helped so much. I have had the Mirena for 6 months now and the panic attacks started happening weeks after I had it inserted. I seriously thought I was going crazy. I have very little stress in my life so I couldn't figure out why I was waking up having anxiety attacks. The weirdest part was they would start when I was doing absolutely nothing or just sleeping. I have had extreme mood swings, blurred vision and the shakes. I was seriously worried something was really wrong with me. I have been to emergency, had an EKG, blood work and wore a holter monitor for a day and everything cae back normal. When I told the doctors I had the Mirena I was basically told that wouldn't be the cause. Needless to say I have an appointment to get it removed. I hope everything returns to normal again. Thanks to everyone for all this information, it has helped immensly!
ReplyDeleteI have had the Mirena now for 6.5 mths. Am losing my vision in one eye. Its deteriorated to the point where I have been prescribed multifocal glasses. I had excellent vision in both eye prior. I am scare that I will lose my vision further. I will be removing the Mirena within the next few weeks.
ReplyDeleteI too have been dealing with side effects of the mirena even 5 weeks post removal. I can't wait to get back to normal again. Its been hell. I had it in for 18 months. After removal the anxiety seems to have worsened. I think its because I didn't have any bad symptoms when it was in. Good luck to us all
ReplyDeleteOh dear lord, I feel like I have just had a massive shot of 'sanity!' I have had Mirena for nearly 5 years. For most of the time it was fine although I suffered with severe back pain from the start but 10 months ago I started with night-sweats, heart palpitations and then INSOMNIA (this is in caps because it has caused me such heartache) then the anxiety and panic attacks kicked in. I thought I was going mad!!!!!!!!!!! I started to see a therapist and spoke to my GP who wanted to put me on anti-depressants. I am having the IUD removed next week and am hoping that my symptoms start to get better. I have a question though, am I likely to be able to get all the detox supplements here in the UK?
ReplyDeleteHi ladies - I just created my own blog about the copper IUD. Many of my symptoms were extremely similar to your reactions to Minera. I'm trying to get more visibility for my blog, I want women to be aware of the risks of this type of BC. Please check it out and leave a comment if you have time!! http://copperiud.weebly.com/
ReplyDeleteI've had mirena for 12 days only and I get very similar side effects like
ReplyDeleteconstant bleeding, bad headache, I feel nervous, anxiety , mood swing, vivid dream also about baby and my depression started to getting worse. I have an appointment in 2 weeks time I wanna take this out. I had implant and wasn't that bad just headache which I have since then. the doctor is not getting into blood steam but it is :o(
Thank goodness I have found your comments.
ReplyDeleteI have had my mirena in for 2 years over which time I have had burred vision, numbness in my leg, stomach pains, dizziness, vertigo, constant fatigue.I have been to doctors and had scans as they have diagnosed gall stones and a DVT... both of which have been clear..I have had numerous blood tests which are all clear. After reading all your comments and other online comments I have linked these to the coil!...I had never thought of this and no doctors have ever suggested it.
I am going to have it removed tomorrow and will be praying that all these horrible symptoms disappear so I can return to a normal life x
I am leaving a reply here, because it was only a couple of weeks ago I was frantically searching for anything to help me. I took my own Mirena out (was super easy) as I had had enough of almost 2 years of migraines, increasing depression and anxiety, and many other symptoms. I definitely crashed after (not everyone will) with massive anxiety attacks and emotional crying and shaking for the first week. I took some anxiety meds from my dr for the first week (never needed them before) but then decreased, and now, almost 3 weeks since removal I am feeling much much better. So, if you are like me, and want a story of hope (most people don't bother to come back and report that they feel better), hold tight. I thought I would NEVER improve, but I am almost back to normal. Same for my sister. Felt terrible for a week or so, but then felt better. No migraines! Best of luck to you all xx There is definitely hope. I don't think we should all buy into the 'never be the same again'. Its not helpful, and it made me feel worse. No, you might not be the same person, but in my case, I am 2 years older, am back at work from 7 years as a SAHM, and in the process of a house shift. There are many reasons why you might be different post removal, but focus on measurable things like less headaches etc. (of course if you are depressed though, seek help, even if its just something to get you through the worst of it) xx
ReplyDeleteHow did you take out your own Mirena?
DeleteI am happy I found this blog. Kudos to you all for sharing your stories! It is very brave to put it all "out there" on the internet. And you are all helping so many. :)
ReplyDeleteI have endometriosis and have had heavy bleeding, irregular cycles, migraines, bowel problems, severe menstrual cramps and the like all because of the endo.
Over the last 14 years of treatments, I have tried just about everything from different pills, to injections, to supplements to patches. Right now I am on Aygestin. I have been offered Mirena 4 times over the last 2 years and I get a bad vibe about it. I won't be asking for it. Intuition says don't do it and there is a reason why.
I am staying away from it. Thank you everyone for your stories and honesty. If I didn't read these I may have went against my intuitive feelings.
Love & Light (and Healing),
Jess
My experience is a little different to most of the above at least to start with. I had my first mirena in 3 years the improved periods made it a godsend until.It just came out.my body rejected it The replacement I had in 8 years and honestly I had no problems periods stopped felt fine until 2 years ago when I suddenly was struck down with full body pains and unbelievable fatigue which fluctuated in its severity I didnt link it to mirena even though my doctor couldnt pin point a reason for my symptoms. I had mirena removed a month ago thinking I had probably passed menopause at 56 years old. Since then my moods swings have been extreme such lows and I have insomnia, hot flashes and fatigue has worsened. body pain is still present but comes and goes. I am hoping this is all a reaction to removal and quickly improves as it is really no way to live.
ReplyDeleteThank you for sharing your story! I had mine removed only yesterday and couldn't be happier about it. I wish I had known in advance what was awaiting me... I knew a few ladies with Mirena, very content. Unfortunately, I have experience a wide range of side effects. It ended up being a nightmare and I wish I had never done it. I suffered from terrible fatigue (I'm talking here sleeping 12-15 hours a day, yet remaining exhausted), disturbing nightmares, bad acne, oily hair, lower back pain, lower abdominal pain, pain when making sudden movements or sneezing, breast tenderness and immensely frequent urination. Plus an ovarian cyst, which after having grown bigger within weeks, was recommended to remove surgically.
ReplyDeleteHaving spent A LOT of money on ultrasounds, cancer tests (the cyst), acne products etc. I decided to remove it after 3 months. Unfortunately the strings went missing. It was very scary, but with a great gyn it went smoothly, and after having been on a pill for 2 weeks only, everything is back to normal, including disappearance of the cyst.
I have most of these symptoms its horrible I hate the mirena. I'm getting mine removed on Friday and hopefully will start to get my life back.
ReplyDeleteI have most of these symptoms its horrible I hate the mirena. I'm getting mine removed on Friday and hopefully will start to get my life back.
ReplyDeleteI had Mirena for three months. First month was wonderful...no period. I had suffered with extremely heavy periods for 10 years prior. I am very estrogen dominant so the hormone specialist said mirena would be perfect for me since I respond so well to natural progesterone (my body loves it) and because he also said with Mirena it stays local (biggest bunch of crap). So three months into my mirena experience I hadn't slept day or night in weeks couldn't even take a nap.. awful! Terrible back and neck pain I spent hundreds of dollars at my chiropractor and my acupuncturist with no relief which was baffling because they always fix me up in one shot. My acupuncturist did some tests and said I was testing high for toxins encouraged me to watch out for preservitives and pesticides...strange because my diet hadn't changed. I was crying all the time and looking for jobs out of the area to leave my husband...what? I've been with him since I was 17! I also love him...but I was crazy! Then the acne started terrible cystic acne everywhere and my hair started falling out in massive amounts and I had such bad tremors in my hands I couldn't even pick up a coffee cup without spilling. Finally I Googled problems with Mirena and wham! It all made sense. I removed the thing the next morning myself. (My insurance didnt cover removal) Within a week the acne and my emotions felt better including neck pain and I could finally sleep. The hair stopped falling out within the next two months and tremors improved. It's been three months now and the only continuing problem is hand tremors which is pretty scary. It's not as bad but when I eat my hands really shake and when I write it's the same, basically anything that requires delicate hand control. I hope it corrects itself. So bummed.
ReplyDeleteInteresting to read everyone's experiences with the Mirena. I do know multiple people who have had fantastic experiences and would urge anyone reading this comment thread to assess whether Mirena is right for them based on their own knowledge of their body and the help of a good and attentive doctor. It's such a personal thing and our bodies are all so different! I really don't want to dismiss or deny the very different experiences of others!
ReplyDeleteThat being said, I've also been having some of the issues many of you described here and completely sympathize with how debilitating this can be. It's awful and insane to me that the health and well-being of so many women seems to go unnoticed and that so few of us are truly educated as to how our birth control methods may affect us before having these prescribed to us. It's not our job to have to, like, research this and try and decipher reliable sources from unreliable sources. We should be able to rely on our doctor's to provide this information to us BEFORE we make decisions!
I have had constant headaches daily, which is not something I've ever experienced. These came with vision disturbances - I have problems focusing, see double, and it feels as though I just can't reconcile what I'm seeing in my right eye with what I'm seeing in my left eye. Everything is constantly "moving" slightly. I have a high prescription and go to the eye doctor frequently and during my routine visit found that I have swelling in my optic nerve and increased pressure with some vision loss in my left eye. My eyes have always been healthy, I just have high astigmatism so this was strange to me. I was referred to two hospitals immediately.
I've had a CT scan, seen a specialist, and am going for a follow up in several weeks. From what I've read and been told by doctors, it really sounds as though this may be pseudotumor cerebri but don't want to jump to any real conclusions just yet.
I did have Mirena removed just recently after having it for three months (and, yes, the weird symptoms have been there for just under three months) and am fortunate enough to have a gyno that took me seriously. She is monitoring my progress, as she believes this really could be related to Mirena.
Other side effects include rashes on my face, neck and chest and crazy absent-mindedness. I forget conversations I've just had and am having to write EVERYTHING down, not like me, and something that has definitely affected my ability to do my job.
Do any of you have any experience with pseudotumor cerebri? Do symptoms improve? Has anyone won court cases against Bayer/Mirena? Very curious to hear more about this.
Last thing: I think it's really important for us all to remember that we're not the only ones going through this. You're not crazy, and you're probably not imagining that you feel like crap. Keep track of symptoms, stick up for yourself with doctors, and don't feel like you should keep sticking it out on whatever medication because things "might get better." Always good to determine if what you're experiencing is a side effect or an underlying problem and take care of it either way.
I can't believe some of the stuff u wrote in this post because I can relate so much and Mr Dr thinks it's other things. The kicking in stomach feeling, insomnia, the extreme tiredness, getting upset with my kids for no reason, loss in interest in sex, hair falling out. And I had mine for at least 2 years before any of these symptoms even surfaced. The 1st 2 years were good I can't say I remember anything going on. Til the last year couldn't sleep tiredness started. The fluttering in my stomach. I really though it had to be other things but now that I've taken it out the insomnia hasn't gone away. But not as tired or fatigue. And the headaches I have had are so bad that I cry and take a hot shower til it goes away. That's my worst symptom. But hopefully removing it will make this go away. It's only been 3 days so I guess I have to see what happens. Thank u for ur story, makes me feel that I'm not alone in this crisis. I don't no if I will ever be safe with birth control again.
ReplyDeleteHello - my hair is falling out in large amounts and the evil IUD has been out for over a month ... can anyone tell me how long their hair fell out for?
DeleteThis is a very good post. Just wonderful. Truly, I am amazed at what informative things you've told us today Pregnancy Week by Week
ReplyDeleteIt is so interesting when you read this to see how many symptoms are present in all of us. I'm 44 and have had the mirena for a total of 10 years (2x5 years each). From a contracptive point of view, I have loved it. I had it put in after the birth of my second child. I have not had a period for approx 8 years. I had the symptoms mentioned above all at different times and never made the connection - I have suffered from tiredness (maybe due to Mirena, but possibly due to age/running a household, working, having hubby and 2 kids to look after), but I've also suffered from things like heart flutters, anxiety, trouble catching my breath, infections etc. I made the decision over 2 weeks ago to have the 2nd one removed and not have another mirena replaced. I wanted to give my body a chance to free from anything foreign. Removal was painfree and very easy. I had a bit of cramping that day and light bleeding for approx 10 days and now nothing. From all I am reading I am of course worried about this "crash" that people talk about - but I'm also trying to remain really positive that there can be some great outcomes also. I'd like to say that I'm feeling really different to when I had it in, but honestly at the minute, I'm not - you quickly remember how annoying it is to have a period (even just the 10 days of light bleeding - argghhh!). I feel like I've made the right decision for my own body! Will post back in another month or so to let everyone know my progress.
ReplyDeleteHave had the Lorena for about 10 months. I am 43 and have Chrons I wanted my tubes tied but since I have had multiple abdominal surgeries doc said Lorena would be better because tubes would be an open surgery with weeks down time. Within the first 3 months I returned to my doc with all types of issues severe back pain bleeding 3 weeks a month, yes light but still. Kept telling me have to give it time. Ok I trusted her, 5 months in now having heart flutters back pain more headaches than normal and FATIGUE, now most of my life I have been a person who only slept max 4 hours and have been completely fine, now I was sleeping 10+ hours a night and needing more, still bleeding light 3 weeks a month, cramping around ovulation and getting a strange grey discharge. She put me on a small dose pill, main issue I am a smoker, please don't judge, she still hesitates doing the surgery even though I have been begging. First month after adding the pill, bleeding stopped, but joints are very sore, more sore than my usual with Chrons, have strange pain in my armpit around ovulation, hair loss still and still FATIGUE. I am going for a visit next month and demanding the removal and getting the surgery. Also, the weight gain has been insane. I spent a year before the Lorena and lost 60 lbs, was happy and healthy, I have put on 45lbs since this and nothing is taking it off. Thanks for all who shared, I know my body, esp having Chrome I know when things aren't right. Well lesson learned. I will post how things go after removal.Thanks
ReplyDeletePlease tell me I have found an answer to my extreme fatigue! I have just now linked the mirena to my symptoms. I've had it for about 6 months and have recently noticed how extreme my fatigue is. I literally get out of bed to go and lay on the couch all day. This is not me. No energy to cook, clean or do laundry. Sex?!? Ha!! I hope my dr. agrees with me.
ReplyDeleteThank you so much for writing this. I honestly felt like I was losing my mind I even accused my partner of cheating on me and became paranoid even though it is ludicrous as he has never given me any reason to doubt him. I Recently started suffering with crippling panic attacks and like u while I was asleep they would wake me up feeling like my heart was beating too fast and I would just feel like my world was collapsing in on me. My body a few days ago rejected the Mirena and it fell out it obviously knows it's no good for me so I am hoping that I will now start to get better. Thank u so much for making me feel less like someone who is crazy. Thank u so much x
ReplyDeleteThank you so much for this blog and everyones response. I will be 50 in Oct and had my Mirena for 34 months. After reading this blog a week ago I realised all of my symptoms has to do with this "poisen" object in my body:
ReplyDeleteDry hair, skin, eyes, blurr vision, constant dizziness, extreme low bp, back and abdominal pain, swolen painful heavy feeling feet, extreme fatique.
Had mine yesterday removed by the gyne and this morning already feeling a difference!
Dr said before removal it is not the Mirena, must be something else, well I have news for him. Removal was not painfull.
If you have the same symptoms, get it removed asap.
Regards
Susan
This comment has been removed by the author.
ReplyDeleteI'm the author--I deleted this because I have no idea why my google account changed my name to Sustain in the Membrane-- weird. I posted again below as just "Anonymous". TY.
DeleteSo thankful to all you ladies and this blog. I thought I was losing my mind. I'm 32. I've only had the Mirena for about 5 months but the extreme fatigue is no joke. I've been overcompensating with 2 extra cups of coffee a day and when I take naps--it's for 6 to 8 hours instead of 2 to 3. That is not normal for me. I'm so frustrated being this fatigued. I had pneumonia a few months ago and just recently got on a good allergy/asthma schedule, but the fatigue and blurry vision is so terrible. I'm definitely going to get this thing taken out. Thanks ladies. The worse part of all this is that the doctors don't seem to believe that Mirena is the cause.
ReplyDeleteI called my doctor today, and she said my symptoms "shouldn't be related" to my IUD. I'm going to have it removed regardless. The vision/brain fog makes me think I have a brain tumor. Did you have yours out yet? Having positive results? I need to know that it will get better!
DeletePlease let us know if it gets better ! I need reassurance
DeleteThank you so much for posting this I felt so alone, I've had my marina removed for 2 weeks, I've had panic attacks whilst out shopping, been feeling like a zombie, extremely tired constantly having to have naps, not able to sleep at night. I had the marina removed due to suffering with high blood pressure and having edema in my lower legs and I wanted it removed as I had read it could be the cause. I feel terrible so not only am I suffering from the side effects of the coil removal, I am also having side effects from the blood pressure tablets so I feel a complete mess. I am dreading when my actual period starts as I have had the Marina for 9 years and not had a period all that time.
ReplyDeleteHello!
ReplyDeleteThank you so much for posting this. I've had the Mirena in for 15 months and about a year ago, after 3 months, I noticed my life going downhill, particularly in the mood, depression/stress, and tiredness department. Because it was the beginning of winter my doctor attributed it to SAD and the accompanying vitamin D deficiency.
Fast forward 6 months and I'm more tired than ever. I've also been diagnosed with IBS which largely showed itself in weight gain (gained over a stone), extreme bloating and very bad cramps - and that is on top of the "period" cramps I had on an almost weekly basis in spite of the lack of actual blood.
I finally had it removed 2 weeks ago when I connected the dots for the first time and have been crashing pretty hard since. Extremely stressed, emotional (seriously, I have days when I can't stop crying ), and SO tired. My doctor seems unconvinced its coil related (in fact, she keeps urging me to get a copper coil and tells me horror stories of pregnancies in spite of condom use) and completely dismisses my extreme exhaustion. I really hope things will look up again soon because I'm at the end of my tether.
How are you doing? I'm hoping to get mine out in the next week or two. Hoping that things will get better with time but hoping to hear of positive results from others who have had theirs taken out. I can deal with a couple of bad months if I know there's an end in site!
DeleteAnyone have success stories following removal of their IUD? My vision and brain fog are out of control, and I've just recently linked that it's likely connected to my IUD. I'm 9mo postpartum and have had the IUD since April. I thought I was just living in the "first time mom fog," but things are getting worse instead of better. I'm so scared I have a terminal illness or something horrific. I'm scared of getting the stupid thing taken out because I'm afraid it won't help...would love to hear some positives about life after the IUD is out!
ReplyDeleteI had mine removed almost two years ago and haven't had any of the problems I was having since! I'm not sure exactly what side effects you're experiencing, but I was struggling with brain fog (legitimately felt I was going crazy, forgot everything), vision disturbances, swelling of the optic nerve, massive hair loss and daily headaches.
DeleteI opted to live life without any form of hormonal birth control after that experience and it's been much better! I really hope you see some positive results for yourself at well - it is no fun going through this stuff but know you're not alone <3
Wow!!! I have had Mirena since August of 2013 after my son was born. I took it out briefly, but my OB/GYN reccomended that I put it back in because my periods are either non existent or they are like a waterfall for months at a time with heavy clotting. And my cells were changing, so he said the Mirena will help protect me from Cervical Cancer. I had to get it replaced in September of 2016 because it had slipped out of place and had fallen almost all the way out. Since 2013/2014, I've been struggling with EXTREME Fatigue. I mean, I literally cannot control when I will fall asleep. I fall asleep all day. I have zero energy or sex drive, and major mood swings. Not to mention, I never had anxiety before until now. My legs have insane pain and I get these awful pains in my head. I even have had some blurriness in my right eye. I've been begging the doctors for answers for at least 3 years now and they do absolutely nothing to help me. They have diagnosed me with Idiopathic Hypersomnia and given me some meds to stay awake....They don't keep me awake. I've met with other specialists that basically act like I'm crazy or tell me to just lose weight. I never thought it could be my Mirena until I randomly got a period a few days ago and haven't had one in like 1.5-2 years before now. So I googled and found this blog! Has anyone had confirmation that the Mirena is what caused their problems?
ReplyDeleteYou are not alone! I have had my life turned upside down due to the insertion of the Mirena IUD just over 4 years ago in June of 2013. I had a procedure called endometrial ablation and then the mirena put in at the same time. Mine was not for birth control as my husband had a vasectomy but for anemia due to heavy menstral cycles. Like many of you my health deteriorated over time.Extreme fatigue, nausea, rashes heart problems, extreme bloating, depression,phantom kicks looking and feeling pregnant yet knowing it was not possible.Then the anxiety attacks began and so on. Once I decided it had to be the Mirena I demanded that I have it removed.I am now 4 months post removal, quit taking all medications and FINALLY I am slowly starting to feel better each day. I have now been diagnosed with Fibromyalgia and Vastilitis which I believe were caused by having the IUD. I continue to have heart and blood pressure issues as well as weak hands but as I continue to see the Doctors Rheumatologist, Internest and Family they too think that It is Possible that this Mirena affected my health. They have seen the signifigant decrease in inflammation, bloating and energy levels since it was removed. Also have had two normal periods and with each cycle inflammation improves.The doctors now recognize I had an allergy to the Mirena. I have begun educating myself about energy medicine Yoga and have noted many improvements. I made a decision to let my body rid itself of all the poisins and toxins and not take anything other than the occasional ibuprofen or aleve to help with the pain. I was taking all kinds of meds anti depressants you name it. I also have not been able to work for almost 6 months now, ended up on short term disability.Just know that we know our bodies and if you feel something is not right trust your insticts and DEMAND ANSWERS. YOU DESERVE A HEALTHY LIFE!
ReplyDeletethank for your nice writing
ReplyDeleteI am so glad I found this blog. This is the third mirena, I have had inserted. This was initially for very heavy and painfully debilitating periods which I have to say it did address and I got my life back. However on reading all this information, I can identify with lots of the symptoms, bad weight gain although I have not changed eating or exercise habits. Feeling anxious for no particular reason, depression, tiredness, body aches, insomnia etc, that I have decided to have it removed soon. I am now 62 so hopefully, there will be no more bleeding. I also have hypertension which started a year after my mum died with all the stress but it is worrying to think the mirena could be a contributing factor. The older I have become the more I feel that we should not fall for the claims of Big Pharma. They only want to make money and do not care how sick they make people feel. God bless you all and thank you for all your comments. Wish me luck.
ReplyDeleteI will be 41 next week, 3 kids (18,16 & 12) and have Mirena for 2 years now with no periods after couple months from getting it. My health problems are increasing each month it is scary and it is very hard to live like this.
ReplyDeleteI have lower back and hip pain, weight gain (about 10kg)and still gaining , extreme fatigue and tiredness,painful pimples and thick hormonal hair on my cheen and cheeks ,I feel sick , lifeless , all my insite women's parts hurt , zero libido ( best don't touch me),migraines ,nausea eczema on my hands, bloating,and who knows what else .My doctor run some tests couple days ago like blood , urine , x-reys and all are normal ,Monday I have ultrasound and decided already to book appointment on Tuesday for removal just can't live like this any more I need my life back and hope for good recovery from this poison.God help me please .
I have had my Mirena in for 3 weeks. I will be getting it removed next week! I got the Mirena 6weeks after my son was born. My milk supply was immediately cut in half. (Which people say can't be a side effect because progestin apparently doesn't affect milk production...I call bullshit) I have severe lower back pain and can't hold my son for more than 15 minutes at a time. Cramps, headaches, mood swings, extreme fatigue even though my son sleeps through the night. I wake up and my hands hurt and are tingly. My skin has become really dry and flaky and it used to oily. My legs and hips hurt a lot. This thing has been a nightmare and I am so disappointed in the Dr and nurse for not being more familiar with these side effects that I not only have experienced but have read hundreds of stories about. Women should be warned!
ReplyDeleteI'm really glad I found this page, I have just had my coil taken out after 5 years, it's been nothing but hell. I've had more problems than I don't know what in this time, every investigation going and found nothing. I have had hair loss, hear flutters, headaches, weight gain, pains in my legs, depression, extreme fatigue, numbness and unexplained pins & needles in 1 leg! Out of breath and blurred vision. Oh and itchy skin. I feel so optimistic that things will get better now. My G.P was fuming I wouldn't have another put in, refuses my symptoms are to do with coil, sorry but I know my own body.
ReplyDeleteI'm so glad I'm not alone with this. Thank you for posting this . I've had 5 years of hell
So encouraging yet scary to read. I have had the mirena fitted to deal with heavy bleeding and clots and was my only option as I can't have the pill and we hope to start a family once my bleeding is under control. The doctor said to keep it in for at least a year to make any difference at all. Before Mirena, I would bleed heavily with clotting for about 30 days at a time with a month break in between. Now, the heaviness and clotting has calmed down, but I have stringy brow skin come out nearly every day and I'm bleeding a little every day too. I'm a newlywed, so the impact on our intimate life is massive. To top this, I am experiencing contractions, period pain, woozy head, headaches, mood swings, low mood, I feel like crying all of the time, I'm struggling to lose weight, and I'm so flipping tired all of the time. I wasn't a great sleeper pre-mirena, but now I'm up during the night far more often. When I do sleep, I never feel as though I've actually rested. I went back to the doctor for check ups, and they said I just needed to persevere and remember that the end goal is to be able to have a family. So I'm looking for support in how to survive Mirena. Taking it out is a last option. I want to keep going for now, but to manage symptoms better. Anyone got any advice?
ReplyDeleteI ended up having it removed a month after I posted this. Immediately I felt like I'd woken up from a deep sleep. I did gave a withdrawal bleed with a coupe of clots but nothing like what I'd experienced before. My husband said that within 24 hours he'd got his energetic wife back. I haven't had a period since...So about 9weeks period free...the longest gap in 2 years. The doctor I saw was a sweetheart. She said the coil didn't suit about 2/10 people and that because I'm 34 and hoping to have children, she wouldn't prescribe anything else until have a better understanding of my cycle unless symptoms get bad again. It felt wonderful to be listened to finally. So for now, we're waiting to see what my next natural period is like, whenever it arrives, and then we'll have another look then. In the meantime, I'm happy to have the coil and it's horrendous side affects gone. Ask the best weigh your hormonal journeys!
DeleteI have had my mirena iud since 2016 after I had my son . I have noticed that I have double vision and blurry vision in the mornings and also sharp pains in my abdominal area and back. Also have been bleeding now for a month straight. It has not stopped,really think it has something to do with the mirena. Anyone have the same symptoms as me. Anyone have any advice for me?
ReplyDeleteGet that Mirena IUD out. I feel like I'm a Mirena Survivor because it almost killed me. I only had mine in for 3 weeks, the first week I became very ill and my vision became blurry, I went to the hospital and they wouldn't even take it out, the second week I went back the blurriness was worse I felt sick my stomach was hurting, my back was hurting, I have burning down the side of my neck like I was having a heart attack, and pressure to my heart, the third week I went back because the second week they didn't take it out when I went back to third week I was in the back of the ER and I could not breathe anymore that's the only way the hospital was going to take it out. The ER wouldn't take it out I had to go to OBGYN and keep that thing in over night because the ER doctor wouldn't take it out after he told me I was going to die if I didn't get it out. Get that Mirena IUD out it's killing women. It's killing us.
DeleteI'm a Mirena IUD Survivor as well nice to meet you. The hospital I'm going to is acting like I'm the only one that this is happening too. I've been researching this medication since April and found so many horrible things about this medication. My Mirena was removed 3 years ago and I'm still suffering, the adverse side effects won't go away and I don't know why. The doctors don't even know why, so that's why they're calling me crazy, and now I'm starting to feel like the doctors are crazy or hiding this from the government so the Mirena can keep killing us.
ReplyDeleteMy blood pressure is messed up. I have blurry vision I was 20/20 now I'm 20/40 and I have to wear glasses. I have headaches everyday, my stomach hurts, my back hurts, the burning sensation down my neck and arm still there, chest pain, and my doctor don't believe me.
I pray for us all and I thank you for posting this blog I'm going to use it to show the doctors that I'm not the only one that has experienced the adverse side effects of the Mirena IUD.