Thursday, October 20, 2011

As promised....my update.

Hey everyone.  Thought it was about time for me to give a detailed update on how I am doing, where my symptoms are, etc.  I'll try to cover everything that I can think of, so bear with me.  :-)

What I will do is write down a list of what all of my symptoms were at the beginning of this whole thing (two years ago!), and then I will write a description following that explains where I am with that symptom now.  Please feel free to put any questions that you may have as a comment, and I'll be sure to respond.  As far as a timeline, I had the Mirena removed about 14 months ago.  However, my symptoms were starting to really affect my life about a year before that.  I had the Mirena in for 17 months before I made the connection and had it taken out.  I had the Mirena inserted in April 2009, and I had it removed September 2, 2010. 

Okay, here we go:

LOWER BACK/HIP PAIN--This was probably one of my very first symptoms that I got (probably 2-3 weeks after insertion) that just didn't make any sense.  I knew that I didn't do anything to injure my back, and suddenly, I was having multiple days where my lower back hurt so bad that I would just lie down and cry.  I went to the chiropractor and a massage therapist constantly, and it just wouldn't help.   UPDATE:  I still have some residual pain that seems to creep up randomly still, but it is nothing like it was.  I can say that the excruciating pain went away right after I had the Mirena removed.  Now, I have some lower back pain every once in awhile, and when it hits, I have a difficult time leaning forward without pain.  It comes and goes.  However, 95% of that back pain went away the moment I had the Mirena removed.

ANXIETY/PANIC ATTACKS--Anxiety was probably the issue that first really made me wonder, "What is going on?"  When it first started, it was minor...things like noticing that I was much more emotional during various times of the month, etc.  Soon, though, the anxiety got to the point where my heart would race, and I couldn't "talk myself down" from it.  I remember, before I got really bad. and long before I made the Mirena connection, talking to people I knew who suffered from anxiety to see if that is what it was.  Before I had the Mirena, I never had a single anxiety episode in my life...not even close to one.  By the time I was at my worst, the anxiety was, by far, my most debilitating issue.  I was having panic attacks that would hit me, not just during the day, but also in the middle of the night while I was sleeping.  There would be times when I would literally pace from my front door to my dining room table and back to my front door...over and over and over....for hours because my body would not let me be still.  I couldn't sit, or I just felt like my body was going to explode.  It felt like my blood was on fire or I had so much adrenaline pumping that I had to keep moving or something terrible was going to happen to my body.  This is a tough one to explain.  I remember trying to carve Halloween pumpkins with my family last year, and I had to leave the table because I simply couldn't do it.  Instead, I went up to my son's nursery, sat in the glider/rocker, and rocked back and forth for two hours bawling my head off because I couldn't even carve a stupid pumpkin with my husband and kids.  I can honestly say that, for whatever reason, my anxiety got worse right after my Mirena removal before it got better.  By what I'm hearing, it was because of the immediate yanking out of all of those hormones and my body was unable to make its own progesterone anymore.  I went from a TON to NONE, and I think I went into almost a kind of hormonal shock.  I'm sure it is part of the now famous "Mirena Crash" that we read about.  The attacks were random and spontaneous.  I remember sitting in a Boston Market restaurant with my two kids when one hit out of nowhere.  Nothing stressful was going on at all.  I was having a wonderful lunch with them, and suddenly my heart was racing, my vision was blurring, and I knew that I had to get out of there.  I grabbed the kids, put them in their car seats, and just sat in the front seat for 45 minutes until I knew that I could drive.  I remember telling my doctor that, out of all of the symptoms that was suffering from, if I had to choose just one for him to fix, the anxiety would be it.  I lived in constant fear of when the next one was going to hit, and when they did...they were AWFUL.   These were attacks that I wouldn't have wished on my worst enemies.  This was the time I completely disappeared to most who knew me.  Even my friends didn't really know where I was because I simply vanished for about 7-8 months.  It was because--at my rock bottom--I was pretty much unable to leave my house very much.  The thought of doing anything was simply too overwhelming.  I can't begin to explain how much that is NOT like me.  I love doing new things, meeting new people, loving life....but during those months, it simply became far beyond what I could handle.  When I did make trips out (because I forced myself), I can't even begin to explain how hard I had to pretend to be okay.  I remember being unable to do laundry some days because the thought of needing to walk up the stairs and separate the laundry seemed too overwhelming.  How sad is that?  Many times, I would have so much adrenaline pumping during the attacks that my body would just shake uncontrollably until I would finally vomit.  UPDATE:  Praise God, this symptom is now a thing of the past! The main difference was noticeable right after my very first three-week "turbo detox".  It included all of those supplements every day (see my post for that information), infrared sauna treatments about every other day (to sweat out as much of the toxins as I could while my liver was detoxing them out, and what I could call "liver zapping" where I had to lie on a table with this patch over my liver that would send currents/little shocks into it to help it with the toxin overload.  When I came back to my home three weeks after my detox, I walked into my front door and started crying because it was the first time that my head seemed clear....like I was really present there--in my home--in a very long time.  I stayed feeling great for four months before my next "crash" hit and I detoxed again. 

(As far as my crashes are concerned [the times when all of a sudden all of my symptoms returned and I was really sick again], I crashed 2 weeks after removal, 2months, 4-5 months and again at around 8 months.  I detoxed twice but have never gone without some level of supplemental support.  I currently take probably around 80 a day to support my systems.  I haven't crashed since, and I am now at 14 months.  Yes, it is a lot, and I am looking forward to the day when I won't have to take them all anymore, but I compare it to the fact that I am taking only whole foods based natural supplements--ZERO medications (because they are synthetic...which would just add more poisons/toxins to my system).  To me, it is important because one day, I will be able to walk away from this and not have to worry about being dependent on any sort of anxiety meds or heart medication that they tried to make me take.  I do think the fact that I have been placed on bio-identical progesterone has helped tremendously.  Until my body can figure out how to make its own progesterone, I still need to take it twice a day.  I am still holding out hope that my body will eventually get strong enough to fix that.  Every month gets better and better, and I just keep focusing on that.

ABDOMINAL PAIN--When it was at its worst, I did have an appointment with my OB/GYN where one of the nurses did an ultrasound on my abdomen and told me that I had pockets of blood in my abdomen.  UPDATE:  Thank goodness, this is another symptom that has been completely healed.  I'm guessing that they have since reabsorbed because I don't have that constant pain anymore.  The only time that I hurt is during ovulation--lots of pain during those couple of days--but I will explain all of that later in the post.

BLURRY VISION/VISION LOSS--UPDATE:  Unfortunately, this is a symptom that didn't get better.  Some days, my vision is blurrier than others, but my eyes are really struggling.  As far as my right eye, the vision tanked soon after I had my Mirena (I have it in my file what my vision was before, and by a year and a half later, I fit the "legally blind" category for that eye.  I wish I could tell you all that it has improved, but it hasn't.  I think I am going to just have to accept the blindness that occurred. 

HEARTBEAT ISSUES--Back when I had my Mirena, I got to the point where my heart rate was just jumping all over the place.  UPDATE:  Thankfully, that symptom has completely gone away!

BREATHING ISSUES--UPDATE:  This is, unfortunately, still something that I am dealing with.  Some days, I don't have a problem at all.  However, on some days, I have a really difficult time with my breathing.  The only way that I can describe it is that it feels like I just can't get in enough air/oxygen when I take a breath.  On those days, I have no choice but to constantly "huff" in big gasps of air to keep from getting dizzy.  I'm thinking about seeing my doc about possibly getting an X-ray of my chest...just to make sure that there is nothing that I need to address there.  I'll keep you updated.

TEETH CLENCHING--I know....weird.  I hit a period right before my Mirena was removed when I could involuntarily clench my teeth as hard as I could, and I wasn't doing it myself.  I would sometimes do it to the point of my jaw hurting, and yet I couldn't unclench them.  UPDATE:  Thankfully, that is another symptoms that is long gone. 

AWFUL MOOD SWINGS--This is one of those symptoms that you hate to ever admit that you dealt with but, like I promised, I won't lie or sugarcoat anything.  Back when I was at my worst, this was a very real issue that I was dealing with.  For those who know me, I am just about one of the most "let's enjoy life" kind of people who just doesn't get worked up about much.  However, at my worst, I would have these mood swings that would take me from feeling absolutely fine one moment to literally feeling like my blood was boiling and I wanted to scream....and absolutely nothing happened to get me to that point.  I've talked to a lot of women who feel a lot of guilt about that symptom because they got to the point of throwing things, etc.   I never got to that point, but I can honestly say that there were times where I felt like I could have on the inside.  When I would start feeling that, I would literally get up, remove myself from any other people, and either go on a walk or go into my son's nursery and rock back and forth in the glider until I could feel that feeling pass.  UPDATE:  Thankfully, this is a thing of the past!  I don't have any more of the huge "up and down" swings that I used to have.  Honestly, the only thing that I notice is that sometimes, at the end of my cycle, I do have moments (an hour here or there) where I can feel really "uneasy" and I know that there is no reason for me to.  It is minor enough, though, that nobody would ever know, and it passes quickly.   I have been told to take an extra progesterone pellet on that day because it is probably a progesterone issue.  I am happy to report that I am back to my happy-go-lucky self most of the time.  I'm not proud of that symptom, but I'm not hiding from it either.  I have to own it as part of my past journey....but I'm just glad that is over.

"PATCHY" GOOSEBUMPS--Yes, I know how random that sounds, but was part of my symptoms.  UPDATE:  Unfortunately, it is one that I still occasionally get.  I will, out of nowhere (I don't even have to get cold), get goosebumps.  But, they are not normal goosebumps that cover my whole body.  Sometimes, it will just be one leg that gets them...and sometimes it will be various spots on my body but in a weird pattern that doesn't cover the whole area.  I have no idea what that is all about, but I still do it.  They don't hurt or anything, but they sure do feel strange.

I also sometimes have an insensitivity to extreme temps.  I was just in San Diego for vacation, and we went to the polar bear exhibit.  It was obviously cold in that building, but we were only in there for maybe 10 minutes.  My hands got ICY cold.  When I got out of the exhibit, my hands started doing that "thawing out" thing where they actually felt like they were burning a little.  That burning feeling in my hands lasted for two days!

NUMB/WEAK HANDS AND ARMS--As I'm sure you remember from my earliest blogs, this was the symptom that really made me jump into action because I knew that something was horribly wrong.  Here I would be...everything just fine....and then all of a sudden, I couldn't feel anything from my elbows to the tips of my fingers.  They just went completely weak and so numb that it felt like my lower arms/hands simply didn't exist anymore.  I think this was about the time that husband really started to take serious notice that something was really wrong with me.  I remember him coming up to the office upstairs one day while I was working on grad school, and I was just crying at the computer.  He asked me what was wrong, and I remember just staring at my hands at the keyboard and saying, "I can't type anymore....I can't feel my hands....Why can't I feel my hands?"  It was so scary.  I couldn't pick up a glass take a drink....nothing.  At this point, this was when my doctor wanted me to start of the route of seeing a Neurologist and get tested for Multiple Sclerosis.  I was two weeks away from setting up my lumbar puncture/spinal tap when I found out about the silicone poisoning in my blood, and I left to do the detox.  UPDATE:  PRAISE GOD, this is symptom that went away as soon as I completed my first detox. 

INSOMNIA--At my worst, I would get about four or five hours of sleep every three days.  Nothing would help.  I remember crushing two Tylenol PMs into powder and drinking them down, and it still wouldn't help me.  This is obviously not a symptom that you can handle for very long.  I would be so exhausted, want nothing more than to sleep, but I simply couldn't.  It felt like my brain was going a thousand miles a second at all times, and it wouldn't let me sleep.  It got to the point where I would have my three days of no sleep, and then I would crash, my husband would have to take the day off of work while I was pretty much unconscious upstairs, and then I would wake up....only to start the cycle over again.  Going that long without any sleep surely doesn't help the feeling that you think you might be losing your mind, that's for sure.  UPDATE:  Again, I am thrilled to announce that this symptom went away after my first detox and it hasn't been a big problem since.  I have some nights where I wake up a lot with night sweats because of the hormone damage, but it isn't anything major. I can't even begin to explain how nice it is to say that symptom is a thing of the past.

EXTREME AND CONSTANT FATIGUE--At my worst, I spent most days in such a state of fatigue that I could hardly function.  The only time I would have any energy was when I was in the middle of a panic or adrenal attack, and then I would immediately return to this state of feeling like I just ran a marathon in cement shoes.  My body had nothing with which to function, and my mind was so sluggish that I was just this empty shell of a person who wished she could walk across the room.  UPDATE:  This symptom is soooooooo much better.  Like I explained in an earlier post, I have my "good days" and "bad days".  Depending on where I am on my cycle, I have days where I have fantastic energy and you would never know that I ever had a problem, but I still have days (usually around ovulation) where my body and mind just feel exhausted for no reason.  Everything seems more difficult to do on those days.  Luckily, though, they are sporadic and much less frequent.

JOINT/BONE PAIN--Don't ask me about this one.  Like I said before, I swear, this thing gave me Osteoporosis or something.  UPDATE:  Don't get me wrong, I have days where I feel fine, but wow....I have days where it feels like my joints are on fire and my bones hurt.  I can't even walk up my flight of stairs without having to sit for a bit on my bed because my legs hurt so much from doing it.  I also have a pretty consistent relationship with my chiropractor now because my lower back will start slowly getting more and more painful when I try to bend forward, he will work on me, and I will feel better for a period of time before I need to visit him again.

Okay....I think that addresses all of the issues from when this all started for me and discusses where each of those symptoms are now.  One thing that I will try to discuss in my current struggle with ovulation.  I am thankful that--even though it is a painful/difficult couple of days, at least I am ovulating.  I know way too many women who had this stupid thing throw them into early menopause.  I'm glad that my body is still ovulating each month....it is just VERY hard.  It honestly feels like, during those two days, my body and hormones have to put so much focus on trying to ovulate that the rest of my systems have shut down a bit to make it happen.  It is the weirdest (and very frustrating) thing.  When my body enters that window of ovulation (which lasts 24-48 hours like for most women), EVERYTHING hurts...and everything is so much more difficult to do.  My abdomen hurts, my joints ache, I'm so tired I can hardly stay awake, and my mind is a jumbled mess.  My vision worsens, and I have such a horrible "brain fog" during those two days that it is sometimes difficult to have a coherent train of thought.  And then....as quickly as it began, and as soon as my body ovulates...BAM.  It is like someone immediately turns back on all my light switches, it is like it never happened.  I have done this long enough now that I just know that, when it is time and I start struggling, I need to just dig in my heels, do the best I can, and remember that in just a couple of days, my body will snap right back out of it.  I am hoping that, now that I am doing the bio identical hormones to clean out the rest of the synthetic hormones, that this part of my body is not permanently damaged.  It is my hope that, as more time passes, my body will figure out how to makes its own progesterone again and be able to ovulate normally without everything else suffering in the process.  For goodness sakes, before all of this, I couldn't have even told you when I ovulated--it was that uneventful and symptom free.  I'll keep you updated on how that progresses.

Okay....I know that this was a really long post, but I promised that I would give an update.  I remember when I was so sick how much I would check in to the forums and see if anyone posted an update and how they were doing, how long it took, etc.  Overall, I would have to make a general statement that--out of everything that I suffered from, all I have left at this time is partial blindness, bone/joint pain, periodic issues of feeling that "brain fog", and a very difficult ovulation window (okay...it's a bit funny to preface that with"all I have left is"...).  Yes, that stuff is unfortunate and very frustrating, but when I compare it to where I was a year ago....there isn't even a comparison.  I have my life back--yes, I still have some struggles here and there that shut me down a bit--but nothing that I can't handle.  I will continue to take the supplements and bio identical hormones until I no longer need them...continue to pray for further healing...but celebrate the HUGE strides that I have made so far.

I promise to keep doing it for you.  Hope it helps.  Please let me know if you have absolutely any questions.

Keep fighting ladies.  We are all still in this together.  We are just all at different parts of the race.  Hopefully, I am nearing the end of mine (and if I'm not, I will continue to be honest about it), but know that I'm staying there at the finish line until you can join me.  It can happen for you.  Don't forget that, and don't lose faith that will.  What a day of celebration that will be!

Big hugs coming at you.  Have a fantastic week.

33 comments:

  1. Thank you so much for sharing your update. I had the mirena removed about a week ago and have been struggling with many of these same new symptoms. It is so helpful to know other women's experience. THANK YOU

    ReplyDelete
    Replies
    1. Hi Mommies,

      I had the Mirena removed 6 month ago and since been struggling with anxiety attacks and insomnia after seeing a couple of GPS I ended up seeing a psychologists. He put me on 3 different meds all for anxiety and depression. Of these meds are S6 and others can even make you addicted. I am feeling completely negative about taking so many meds. ANY ONE OUT THERE THAT HAD THE SAME?

      Delete
  2. Mirena pretty much destroyed me. I lived in nothing but constant pain for 3 years. From when I was 24-26 years old. Specialist after Specialist trying to tell me I had MS, Nerve issues, Fibro, and all sorts of things. I was a lab rat for medication. Not to mention a doctor who did nothing but throw vicodin/oxycodone my way--how was that to solve anything?? When I got the Mirena put in it (March 2008) was the most excruciating pain ever, and I've had two natural births. I kept telling them something was wrong! They told me to take tylenol/ibproufen that weekend. Didn't help. I could not find the string, and went back for a follow up to make sure it was placed right. The doctor kept looking and looking, and finally said "I think I see it" you are good to go. I went to a urologist who did a CT Scan on me since I had some kidney issues with my pregnancy which was 3-4 months prior. All was fine other than a minor kidney condition I have. He suggested off the bat that I immediately take copies of the scans to my OB/GYN because it appeared my IUD was out of place, but they are not specialists in that so to go ASAP. My doc wasn't there, but as soon as she reviewed the scans she had me come back in immediately. She could not find the IUD via string, did an ultrasound- not in uterus.(This was in JULY 2008) She said it had to have perforated the uterus. I KNEW IT from the start, but they kept telling me all was fine.

    So from March-July I had an IUD growing into my abdominal wall. I have photos from the surgery, and you can actually see where it was attaching to my abdominal wall. That was removed, and I had my tubes clamped while in there. I believe that was another mistake in itself. I never had relieve once the IUD was taken out.

    The pain I lived with for 3 years (worsening every step of the way), and all of the money that went into finding answers was just insane. ER visits in the middle of the night for excruciating pain, MRIs of my brain, Chiro, Accupunture- etc. I was desperate!

    Last December I had a hysterectomy. Partial. I don't have to take hormones since I still have my ovaries. I was 26 years old having a hysterectomy.


    The OB/GYN surgeon (who I call my miracle doctor) that I saw here (I had moved to an entirely different area) was the only one who took me seriously. All other doctors and specialist would look at me and automatically say "You are too young to be in this kind of pain" Well NO CRAP! What did they think I was there for?! I was a fine healthy young woman until this happened. Now I will never have another child of my own. I tell everyone I know about this because it is VERY real, and a lot of women just don't know the risks.

    After the hysterectomy, I knew as soon as I woke up that the pain was gone although I was still in pain from surgery. Amazing how that works. I really hope more people wake up and realize just how big of a risk there is that this one piece of plastic hell can change your life in the blink of an eye.

    ReplyDelete
  3. So thankful to have read ur 14 month post of which I really enjoyed. Keep them coming!!!! Well written too! I believe I need to detox and read that you had a liver zapper procedure done. Please elaborate. Like what is the medical name of this procedure? I need to definitely pay for this detox procedure bc unlike you 'm still have reoccuring panic attacks, dizziness, Difficulty walking, blurry vision, slight brain fog, headaches and irregular menstruals although I feel like I am ovaluating and fatigue fatigue fatigue. I'm actually 2 year post Mirena. The only thing that I'm taking at this time is Vitamin B's. I tried Progon B but felt really sick after taking one pill so I never took another one. I actually crashed 2 days later by having the worst panic attack ever while on my job which was so embarassing. If u can provide some advice feel free to do so at Nashira.Alston@comcast.net

    ReplyDelete
  4. Hi,
    I wanted to ask a few questions about things from my mirena. I have had past issues with my stomach bloating looking like I am nine months pregnant within an hour. Every doctor I saw wouldnt even look at me and just say that its irritable bowel syndrome.... I had a colonoscopy and upper endoscopy done and they could not find any reason for my pains and swelling and every other issue. Now recently I have become depressed had anxiety severely, can feel things moving in my stomach, severe insomnia and high sex drive (I know that one doesnt seem bad but when it's running for over six hours for no reason til 5 am its irritating), leaking breast milk, I mean the list goes on and on. I am planning on getting it removed but no one will take the time a day to even look any further than a pelvic exam and they all say its not the mirena. One doctor actually asked me if I was making it all up I felt like yelling ya because I had nothing better to do with my life than come into your office and spend all this quality time with you every other week..... I just really want some help and advice on what could be doing this....

    ReplyDelete
  5. Just get the Mirena removed cgelly....seriously....dont wait. Its the worst thing I have ever put in my body....and did so much damage to me just like everybody else on here.
    It causes all those symptoms you have described and more. Just ask your doctor to remove it. Dont listen to them telling you..."Its NOT the Mirena"...Because it is!

    ReplyDelete
  6. The Mirena has ruined my 20's. I just turned 28. I had the mirena put in when i was 24 and just had it taken out about 7 months ago. I have lost many relationships because of of my anxiety, depression, mood swings, and constant sadness throughout the years. It makes me sad bc i still have some of these symptoms even after 7 months. The anxiety- sadness hits me hard 2 weeks before my period. I stay in my house, don't talk to anyone, force myself to do my homework and force myself to go to work. This is how I felt the whole time I was on the mirena, now its just two weeks out of each month. I am going to the doc Thursday to get my hormones checked out. My OB pleaded with me not to get the mirena taken out bc he believes these symptoms have nothing to do with the Mirena. My last OB was a big promoter of the Mirena too. I don't get it. I'm just glad that I finally found out after all those years that the mirena was what was making my life a living hell. Oh, and my hair has finally started to come back in, thank goodness.. I was literally going bald. My eyesight is horrible now, Im a -8 in both eyes now. I feel like the mirena has aged me 10 years, no lie. I'm so glad I found this site. I am going to look into different detoxes. Does anyone recommend one?

    God Bless Everyone that has dealt with this,

    Cassandra

    ReplyDelete
  7. The Savvy Savin' Momma--Wow! What a terrible experience! I can't even imagine! I feel like I went through hell and back, and I didn't even have it embed itself in my body! I can't imagine what it was like for those of you who did! A hysterectomy at 26....you poor, poor thing. I completely agree with you. People just don't understand what this tiny little thing can do to a woman. All we can do is just keep spreading the word.

    Nashira--I will have to ask Dr. J. was the liver zapping thing was called. I'm not sure myself. I never asked. As far as the Progon B, are you sure that is what made you feel poorly? If so, I'm so sorry to hear that. I never had any bad feelings from using it. It helped me a lot during ovulation time when I struggle the most.

    cgelly-- When I read your response, I had an 'Aha!" moment....I had completely forgotten about the side effect that I had when I still had the Mirena inside of my belly feeling like something was actually moving around in there! I can't even begin to tell you how many times that I took pregnancy tests because I was just positive that I had to be pregnant because it literally felt like a baby was kicking in there sometimes. Once, I even saw my stomach move! Don't ask me what that is all about. It never happened again once I had it removed. I agree with anonymous....you need to get that thing out of your body ASAP!

    Cassandra--"Two weeks before your period"....yep, that's ovulation. That is the toughest time for me as well. It makes me sick to read your statement, "My OB pleaded with me not to get the Mirena taken out..." What in the WORLD? Why should they care? That makes me so angry. Do these people get some sort of kickback for the amount of time it stays in our bodies? For goodness sakes, we are telling you that we are sick and we know that this is why....just take it out! Grrrrr......

    ReplyDelete
    Replies
    1. Hi Proud Momma Fighting Back. I've read somewhere that the docs get a certain amount of money from Mirena for every one they put in? I'm not sure if that's correct or not though. My doc put me on Loestra 24 about 2 months ago. It seems to balance me out. I like it so far. ;)+

      Cassandra

      Delete
    2. Dear proud mama
      I am suffering from almost every symptom you did. I just had my mirena removed two days ago (may). My main problem is I am having severe panic attacks. I got my mirena in february and in april I started having horrible anxiety and panic attacks. I am constantly panicking thinking that I am dying and I'm miserable. My question is how long did it take for your panic attacks to go away? In desperate need of help. thank you!
      Whitley

      Delete
  8. "Do these people get some sort of kickback for the amount of time it stays in our bodies?"
    Funny you should say that, but I heard that they do. Remember this thing is promoted as being great because you can leave it in for 5 years. It doesn't look good when everyone is getting them out after a year or two. I have known two women who had to break down and cry before their doctors would remove it! So yeah there does seem to be some reward if they keep it in women as long as possible. I have also heard that if you say you want to have another baby they will remove it readily for you, but not for any other reason. This suggests to me that doctors must need to record the reason why they are removing the Mirena. And that reason doesn't make the product look bad. But if they have to record that women are having adverse effects then who knows maybe all this information is being collated by the FDA or something. Anyway it makes sense to me that Bayer are offering some incentive to doctors to put the Mirena in and keep it in.

    ReplyDelete
    Replies
    1. I am about to have my Mirena removed -can't get an appt before mid May that's 6 weeks away and I am seeing a rheumatologist before the removal, I am 50 years old and on the edge of menopause, I have always been fit and vey strong and this bloody thing has reduced me to a physical mess in 3 years. I have gained 20kg and have excruciating hip and hand and wrist pain, and weakened ligaments the thing is poison. I am pretty sure that the doctor who put mine in has shares in the company that promotes or manufactures the things. He was not supportive when I said I thought it was causing pain, and told me to wait it would settle. well it hasnt. it is worse. I have got another doctor who is going to do the removeal for me as soon as she can fit it in. I am not impressed. My very mild asthma has exaserbated and my lung function is down and i have experienced heart arhythmia. Over all, not happy. :(

      Delete
    2. Hi, I feel your pain.I'm 49 have had 4 lupron injection since June and took provera pills for add back. Dr suggested Mirena ( for heavy bleeding) I got it in less than 2 months ago. Right away got horrible allergies, sneezing and watery eyes. Asthma that I haven't had for over 12 years. Went to gyn today with cramping and begged her to remove. Said she would examine me but not remove. Upon examining found it had dislodged or it was never attached. She removed it. Thank God. I will now go back to the provera pill regimen of 14 days a month. My asthma is better already.

      Delete
  9. Oh and I forgot. One woman I read about on a forum somewhere said she rang her doctors practice to get it removed and the receptionist said that none of the doctors knew how! What crap. If they are trained to put it in they are trained to take it out.

    ReplyDelete
  10. I really appreciate all the info. I just got mine removed about an hour ago and I already feel better. I only had it for 3 months but I had horrible back and hip pain and really intense anxiety. So glad I got it removed.

    ReplyDelete
  11. I got mine removed last week. And my stomach hurts me soo bad I don't no what to do. Somebody please help me I've had it in 2yrs and decided to get it removed because my mate could feel it, and it was moving. Now I'm in so much pain.. grrrr

    ReplyDelete
  12. i just want to share my experience with mirena. i got my mirena inserted in february 2013. it was very painful and i had problems the entire time i had it. it started with long periods and progressed from there. my period lasted the entire time i had it in and every time i had sex the bleeding gotn even worse. slowly over time, looking back, i realizze that my life started going downhill after i got the mirena inserted. i was moody, exhausted, and anxious. fast forward to april 2013. my heart is racing, chest and left arm hurting and tears are rolling down my face. i am in a full blown nasty panic attack that i have never suffered from before. i legitimately thought i was dying from a heart attack. i got over that and went on with my life. as the next month passed my panic attacks became more frequent and more severe. these are the things i feared in different panic attacks: heart attack, stroke, blood clot, tumor, anaphelactic shock, seizure, coma, hole in throat. the main one was a heart attack. in early may i began having daily panic attacks about the things above that i mentioned and every one of them felt so real to me that it became crippling. i lost 10 pounds in seven days, i wasn't eating sleeping, drinking, talking, anything. mmy life felt ruined. on may 17th i made the connection that the mirena was the problem when i googled "mirena panic attacks" and found many other women with my same problem. i called my doctor and immediately got in removed. today is may 21st and im already feeling tons better. i havent had a real panic attack since i got it removed and every day i improve a little bit. im determined to get my story out there to help other women. do not get the mirena!

    ReplyDelete
  13. One week after taking out the mirena. Feeling about 80% better. Still having a lot of anxiety and was just prescribed klonopin yesterday to help me sleep but im getting better little by little. There is hope

    ReplyDelete
  14. Hello,

    I had MIRENA inside of me for three years, and the only thing i can say is that ,,magical'' invention ruined my life. Mood swings, candida overgrowth, thyroid problems, blood circulation problems, heart palpitations, extreme anxiety with panic attacks, hands trembling, brainfog, digestion problems, extreme weight gain, hair loss, memory problems, insomnia, skin problems, allergies and i was never allergic to anything, joint and back pain. I'm living in Lithuania and here nowone even talks about side effects of mirena and i asked my doctor but only said that its all in my head because i have panic and anxiety disorder, I always was really happy, energetic, mom and wife i liked travelling, meeting friends, never even had any health problems untill i put in that trash inside of me. I think its reallly serious the woman have a right to know that this product is a total junk because doctors out of their own profit never gonna say real true about the quality of this evil mirena it made me go through hell and i'm just 31.

    ReplyDelete
  15. I had my mirena in for almost a year. I had horrible acne and weight gain. I got it out 3 days ago and have already lost 1 pound. My acne is getting better also. I would rather take a pill everyday than have that mess.

    ReplyDelete
  16. I had my mirena in for the full five years. I was fighting Every day with severe pelvic pain, yet told it was not from the iud, that the pain was in my head. Nobody believed me, my husband even told me to stop going and wasting the money. I was diagnosed with pid last year and was not told it should have been removed then. When I asked drs to take it out, they all told me I had to go back to who put it in. I had moved from that town and that was not an option for me. I just got it removed Monday, two days ago. They had to call in a specialist to "reach the string". The pain didn't hit until an hour after I left the office. I am still fighting with pelvic pain and on birth control pills. I am hoping the pain goes away soon. I have had mood swings like crazy,no anxiety. However the insomnia is there and no period has hit yet, although i am just hitting the three day mark. Alieve doesn't do much for the pain, ice packs help. Just want this battle to go away. After searching for a dr to remove it and finally being told it was not in my head, my husband finally knew I was not crazy.

    ReplyDelete
  17. Yes, ladies i believe you!! I have fought through this also for 4 years. I had no symptoms initially then after3 years I thought i was going crazy! I became depressed.... felt no joy, then panic attacks, anxiety, joint pain in my hands. My hands swelled and became tingly and red. I had panic attacks that caused me to almost go to the hospital.... my heart racing.... feeling lile i was g to die...could not control it! I'm terrified i have an appointment for removal in three weeks!

    ReplyDelete
  18. Our stories are the same with back issues, never broke a bone all natural birth, and crippled, 6 years later still issues nothing I can't handle, I not brought to my knees, I can walk straight, and occasional nerve issues, With all the Pt... I know It works now finally... Dr. practice medicine on us... fight back... they are not always right... steroid injections, pills upon pills... Unreal we even fda approve this for women...

    ReplyDelete
  19. Ugh. I had my Mirena out in like August and had lower back pain (horrible pain) since the december before that but I still have really bad back pain. Going to the OBGYN today about pelvic pain I still have.

    ReplyDelete
  20. Ladies, if you are having Mirena-related issues, please please please consider finding an acupuncturist, particularly one who understands the hormone-related points. Mirena did some hellish things to me, but I found a TCM practitioner who made the suffering so much less terrible. Incidentally, the acupuncture he did also turned out to be good for my generalized anxiety and dysthymia, so it was definitely a silver lining. I am beyond sensitive to drugs and herbs now, so I have had to take my treatments very slowly, but women who aren't so sensitive can probably benefit from herbal treatment as well. If you are in SoCal you can also visit my acupuncturist - his name is Michael Padilla in Orange. Please spread the word that this is a very viable treatment for the horror show that some of us have had to deal with! I hope everyone can heal from the mess Mirena can leave behind.

    ReplyDelete
  21. I had the Mirena in for almost 4 years and I started to have stroke like symptoms. After researching on the web, I realized that it might be the Mirena. I had it removed, even though the OB thought I was nuts and the symptoms stopped. Then the Mirena crash. For years, I've had panic attacks and other strange symptoms. They mimic all kinds of different diseases and issues. I finally went to a different OB many years later and they discovered basically a mess in my uterus: polyps and fibroids, in addition to an ovarian cyst. Got most of that cleaned out. Also turned out that my body stopped producing its own progesterone because it got used to the high doses from the Mirena. I started taking progesterone pills and wow - most of my symptoms are gone, especially the panic/anxiety attacks! Still have a few like ovulation cramping and some uneasiness, but I'm like a new person. When I looked up the symptoms of low progesterone, it was uncanny! It mimics all kinds of different problems like thyroid etc. I'm also seeing a natural medicine person to see if I can kickstart my own body's production of progesterone. Hope this helps someone out there who is suffering like I was!

    ReplyDelete
  22. Hi there, i’m almost 28 years old and I had the mirena coil in for just over 3 years, my doctor recommended I switch to it from the copper coil as I was struggling with heavy periods and depression from it.. I wish I had never listened to them.

    Swapping them was straightforward enough, a little uncomfortable but fine, i felt immediately better and for a year or so after didn’t have any major problems, other than some mild anxiety. Gradually over the course of the next 2 years the anxiety worsened to the point where i would wake up with panic attacks every morning, i’d be constantly exhausted, have headaches, cry over nothing, my skin was disgusting and i lost all interest in being intimate with my husband. I felt as if i couldn’t function or be the wife and mother that i want to be.

    2 months ago i went to my doctor to ask for it to be removed, she couldn’t find it.. i waited 2 weeks for a scan which showed that fortunately it was still where it was meant to be, but the strings had been cut too short (I’m sure they were fine before so I have no idea what happened).

    I made another appointment and had 2 nurses try to remove it, which they couldn’t, so a week later my doctor – instead of referring me to hospital – decided to try again! She made a joke that she was certain she could have removed it and that it looked as if she was lying.. sent me home to await my hopsital referral for surgical removal.

    2 weeks ago I had it removed under general anasthetic, procedure was quick and relatively painless just some cramping and bleeding afterwards, the bleeding has stopped now.

    However, although my anxiety went initially, it has returned over the past couple of mornings and i’ve been struggling to control it – I think it coincides when I am due on my period, but i am yet to have one. My husband had a more ‘serious’ operation recently and I need to care for him and my daughter, I am due to start full time work again this Monday, and I just want to have it under control. I’ve been taking Kalms, rhodiola, drinking tons of water and chamomile tea and eating as cleanly as possible – I don’t want to take the antidepressants the doctor has given me, I can’t afford to make it worse. I’ve read that 5-HTP is effective, although it can make you drowsy so be careful if you’re driving!

    It seems like there is no immediate fix to this – if anyone would like to message me and keep in touch about concerns or to track getting better i’d love to hear from you, a lot of forums i read don’t have very recent posts. My e-mail is rifhanley@gmail.com

    Take care of yourselves, and remember, it won’t last forever!

    ~ Eva

    ReplyDelete
  23. I cannot tell you how helpful it was to find this blog. I am 20 years old, and had Mirena inserted just before turning 19. I had it in around the same amount of time as you. My relationship (which thankfully we got back together) failed miserably, I was depressed, more anxiety than I ever thought possible, 3 different kinds of anxiety medication later, and I decided to have it removed in early October of this year. I am still fighting the anxiety daily and while it's incredibly difficult, finding posts like this are wonderfully hopeful. Thank you so much!

    ReplyDelete
  24. Thank you so much for this post! I have had my mirena iud for a year and a half and I honestly cannot begin to explain how much pain I am in almost every day and night. It is so emotionally draining as it is physically draining. My boyfriend and I have had so many fights because he tries to be by my side but it's emotionally and physically draining him as well. I have panic and anxiety attacks daily and my whole body goes numb. Most days I cannot even feel my hands or they're extremely weak. My body feels like I am a lot older than I am (I will be 25 on Tuesday) and I get nose bleeds very often. I feel like my throat, nose and lymphnodes are swollen and my neck hurts all the time. I went to the ER three times within a two week span because I literally thought that I was having a heart attack. I feel helpless and most of the people around me try to understand but they never will. It is awesome to hear that a lot of those symptoms will be of the past once I get my iud removed!

    ReplyDelete
  25. Thanks so much for sharing, I have pretty much the same symptoms you do. I removed my IUD about 2 months ago. I still experiencing them, but they are getting better and better. I still experiencing the numbness in my arms and fingers which scares me a lot and that is what took me here. The hip pain is also something else. Can't really describe what it feels like, but I am sure you know. Thanks again for sharing, please continue to share your update. Looking forward to see your update.

    ReplyDelete
  26. I'm 23, and I had Mirena since Nov 2012. I never had a panic attack prior. Beginning July 2013, I started having these random attacks. Every attack goes the same way: sounds amplify, lights brighten, everything spins, I lose my balance, a shooting cold feeling goes from my stomach out to my limbs, and that's when I know I need to find a restroom, my body empties out (diarrhea and vomitting, simultaneously), I shake uncontrollably, I become tachycardic, my mind races, I get horrible chills, and all of these symptoms last for 9-12 hours straight. The first couple of times I went to the ER. Within a few months, those panic attacks were hitting me at any given point and time, with no known trigger, on a daily basis. I've missed school, I've missed work, some weeks I can't even leave my bedroom, let alone my apartment.
    It's embarrassing to try to explain to someone why I can't leave home. I am so scared to be somewhere where a bathroom isn't a foot away from me, and then to have to go through a full attack somewhere in public.
    I had Mirena removed July 2014. They had to forcefully dilate my uterus in order to remove it. Incredibly painful.
    In normal panic episodes, for most people, it's an overwhelming feeling of impending doom or a fear of death.
    It was never like that for me. For me, it was that each episode was so horrific to go though, and to watch that clock go by so slowly, and to know that I'll probably be like this tomorrow.... I was never afraid of death in any of those moments. I hoped for it, and contemplated it, just so it would end.
    Let me put it to you this way: when I was 17, I had my wisdom teeth removed. The pre-op Valiums did not take. The Novocain did not take. The Laughing Gas did not take. My doctor continued, regardless of me asking him if I was supposed to be fully with it, and able to feel everything. I would rather go through that again, if it meant I would be freed from the panic chains that render me unable to live.
    I weighed the pros and cons, and based on the list of side effects I had read from Mirena, I opted to have it implanted. Because severe, crippling, debilitating panic attacks weren't a side effect on the list.
    I wish I could go back in time, and change the choice I made to get Mirena. I used to be so much fun, outgoing, and I loved traveling.
    I'm out ER costs, doctor visits, evaluations, blood tests, medication costs, at least $16,000 in top-notch therapist expenses, $1,000 on my honeymoon (luckily I got some coverage on it)....and all of that may really suck.... but what about my life? Is my life wasted now, because I've done all the tests, there is no help for me, and Mirena did its damage? I feel so, unbelievably trapped. I am a shell of a person now. And, I am so sorry that I let down everyone who was relying on me.

    ReplyDelete
  27. Here are symptoms of an infection from Mirena:
    Potential symptoms of a Mirena IUD infection may include:
    Abnormally Late Menstrual Period.
    Abnormal Vaginal Discharge.
    Chills.
    Fever.
    Flu-Like Symptoms.
    Missing IUD String.
    Painful Sexual Intercourse.

    ReplyDelete
  28. I had mine removed in august after i started having what i thought was a heart issue (it was actually panic attacks) and they actually got WAY worse after they took it out. they then proceeded to put me on two EXTREMELY strong antibiotics which made my panic attacks worse. prior to this time i never ever had anxiety issues. while my mirena has been out since august 12, 2017 i am still having panic attacks although not as frequent and i feel so exhausted after them. i went to therapy for this as i was discharged from the hospital with only "anxiety" when i swear there had to be more to this. i had all the abdominal pain and everything so they said "go gluten free" and i did for a month and it was absolutely horrific the headaches i had. i am glad (but saddened) that there are others who have had similar experiences. it makes me not feel so alone

    ReplyDelete