Monday, November 7, 2011

14 months post removal

Hey everyone. I still consistently get on the CureZone.com "Mirena Side Effects" forum, and I saw a woman's post that said that she was finally symptom free, but it took until she was three years post removal before she could say that. I wrote her the below email because, as I am sure as you all know, it is so hard to find anyone on the Internet who sticks around long enough to ever post that they are all better. I see some say that they get up to about 90% at a year post (I am not one of those, unfortunately...but I am much better. I would say that, if I stay on my supplements, etc., I am at about 80%), and I also see posts from women who still struggle four years later. I am obviously hoping that it won't take me that long to recover, but this women's symptoms were similar to my own, and I thought that she might be able to give me some insight on what to continue to expect. I decided to post my email here because I thought that it would give you my update as well as a chance to see if any of you see any similarities with your situation. Here it is:
__________________

Hello, ********, I go by the tag "ProudMomma" here on Curezone. I saw your most recent response that, finally at the 3-year mark, you are completely symptom free. I am currently at 14 month post removal, and although I am much better than a year ago, I still have some issues that I was I interested in seeing if you still had them at after one year post removal and if you can honestly say that they are completely gone now:

-- I notice that I still struggle more around my period (right before and right after...but actually feel pretty good during it) and right before ovulation. I get really foggy-headed, very lethargic, sometimes dizzy, and just an overall uneasy feeling. During this time, my breathing, vision, and joint inflammation also worsens. During this time, there is also an overall feeling like I'm not fully present in the room or in the conversation I'm having.  I have to concentrate really hard to just be clearly "there" because I'm in such a haze.  I know that sounds weird, but that is what it feels like...like I'm half there.   As soon as my period starts or ovulation happens, it is like I snap back in to feeling good again.

--I also still have breathing issues that I can't seem to track down to a certain time. It is sporadic and random, but it is really bothersome. I constantly have to "huff" in a big gasp of air because I feel like I can get in enough air/oxygen when I breathe). This is not attached to any anxiety whatsoever. I just can't breathe very well on some days, and it bothers me that it doesn't seem to get any better.

--I still have days where I have zero energy...no matter what I do. Again, much worse around my period and ovulation.

--I lost a significant amount of vision in only my right eye (that was one symptom that made them concerned about a possible MS diagnosis at one point--the fact that I had quickly deteriorating vision in only one eye on top of losing the feeling in my hands). I never got officially tested because it seemed like so many of us did and got negative results. That vision has gotten to the point where I am legally blind in that eye. I'm wondering if,now that I am over a year post, if I should just give up on the thought that I will ever get that vision back. Did you ever have this symptom? If do, did it get better, and at what point?

--Lastly, I have days where my joints (and even my bones) feel like they hurt so much that I can't even get up my staircase without needing to sit down because my legs are just throbbing. This is even worse if it is on a "bad-breathing" day because, after walking up only 15 stairs, I am sitting down with my joints on fire and literally almost gasping for air.  Again, these are worse during ovulation and before and immediately after my period.

I just wanted to get your response because I see everything from some women feeling so much better after one year, and some still struggling four years later. Your past experience sounds very much like mine, and I'm having a day where I just really want to hang on to something....know what to expect....and what to accept.

Again, I am so much better than a year ago. The debilitating anxiety is gone, etc., and I am so thankful for that. Many other symptoms have also resolved. These are what I have left, but considering that two years have passed since my symptoms began (and it's been over a year since it was removed), I am still holding on to the possibility that these last issues may still resolve themselves.  And if not....so be it.  I just want to know.

Thank you so much for taking the time to read and hopefully respond to this. It means so much.
________________________

Well....there is the letter that I sent her.  I'll let you know what (and if) I hear back.

I'm not really sure why I still try to figure this out so much.  On my good days, I honestly don't think about it much--and I spend the day doing as much as I possibly can because I know that these days are fleeting and random.  Since I know that tomorrow could be a rough one, I spend my good ones being as productive as possible.  However, I am still nervous about the "what if" questions regarding a complete recovery.  I think it is is mainly because I am a high school teacher.  I am taking time off right now to be with my small children, but I will be returning in just a couple more years.  Currently, on my bad days, my brain still just doesn't work right.  It's so foggy and disoriented, and I find myself aimlessly walking around the grocery store because I forgot why I was there or where an item is located....and that makes no sense because it is a store that I am at every other day and I know like the back of my hand. It's frustrating as well because I know that I SHOULD know it, etc.   However, on those days, I find that I am more disoriented.  I have to try so much harder to make my brain clear, remember things, etc...  I'm assuming that it is tied to the hormonal damage since it seems to based on my cycle when it worsens.   It is mainly worrisome to me because that HAS to be a thing of the past when I return to teaching.  There is no way that I can pull off being a good teacher 98% of the time, but then I have to fake it through a few days each month because I can't follow the lesson plan properly or remember what I was saying.  If my vision never returns, fine....I can teach with one eye that doesn't work.  But, there is no way to fake it with a room of 30 eighteen year olds when your brain starts working in slow motion.  It is when I think about that possible future that I get nervous about whether or not I will get past that issue.  I am in a phase of my life now, as a stay-at-home mother, where I have the opportunity to adjust my day based on when I am more symptomatic.  I can choose to not attend that function or choose not to go the store that day.  I won't have that opportunity to "opt out" of certain days when I am a teacher.  I need to be on point each day, and it is concerning when I think about that unknown.  I am hoping that, when I step back into the classroom, this whole thing will be just a bad nightmare.  I need to hold on to that sometimes....so I continue to ask questions, try to find others, and continue to do everything I can to work on my own recovery.  As always, what I find, I will send out to all of you.  Keep those chins up.  We'll get there.

*************UPDATE*************************

I received a response from the woman.  Here it is.  Yes, it seems like two years is a long time to wait, but I'm already at almost 15 months post removal.....  Also, it means so much to FINALLY hear from someone that--even though it took a long time---she is okay now.  Anyway.....here is her response:



Hi, How are you? So sorry that I have not gotten back to you sooner ,I so feel your pain.  At my 14th month post removal, I still had a lot of symptoms--all the ones you described and more, but I'm happy to say that I'm pretty much back to my old self.  It has been a long lonely horrible ride. If it wasnt for all you lovely ladies, I don't think I would have made it !!! All my symptoms were a lot worse before my period and around ovulation--especially around ovulation for some reason.  I will give u a list of all the symptoms I had:

Dizziness
blackouts
pins and needles arms and legs
arms falling a sleep at night
eyesight was fuzzy and my eyes wouldnt adjust from light to dark properly
twitching muscles
anxiety
panic attacks
breathing issues EXACTLY how you described it
weird patches of goosebumps
muscle weakness in arms and legs
balance issues

There the ones that I can think of off the top of my head.  I had all these symptoms right up until about 2 years post removal, and then things started settling down after that.  I know 2 years is a long time--I don't know why it's taken so long whereas some people recover quickly.  The only thing I really think helped me was diet and exercise (when I felt well enough to start exercising again).   I wasn't going to take anything after the Mirena.  I will never take my health for granted ever again, but I promise you that things will get better.  For some reason,  it just takes some of us a lot longer.   It sucks, but you will get there.  

Love to you, and I will be here if you want to talk. 

*******************************

(Now....after I got her response, I wrote her this email....again, I will let you know what I hear back):

Dear ******,


Thank you so much for responding to me! It really means so much!

So, you can say that your vision returned back to normal as well after the two year mark? The main reason that I ask is because my right eye tanked so much (and they are both blurrier than before) that I've actually thought about seeing if I qualify for Lasix surgery. But....if I still have a chance for my vision to improve on its own, I don't want to waste the money on the surgery and then have my vision change again.

Yes, two years seems like a long time, but I'm almost at 15 months, and it just feels great to read that there is still hope that the rest of these symptoms may not be permanent.

You really have no idea how much you have given me by your response. Thank you, thank you, thank you.....



*************
(Again....I'll let you know if/what I hear back)--Blessings!

18 comments:

  1. I will be 2 years off mirena in January. I feel about 95% back to normal. The only problem that remains is what I call bad PMS - that feels similar to when I had mirena (but not nearly as bad). I think mirena brought on peri-menopause. We are never the same after having this terrible experience hence the quest to understand! Glad you are feeling better there is hope :)

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  2. I had mirena in my body for 2.5yrs when I found out I was pregnant (with it still in my body). The coil was not able to be removed during the pregnancy as it had pierced through the wall of the uterus and embedded into my abdominal muscle. Removing it would have probably resulted in immediate miscarriage. However, leaving it in my body also jeopardised the health of my body and the success of the pregnancy overall. Luckily my Son survived inside me and was born on 30th May 2011, weighing a very healthy 8lbs 9ozs with no apparent side-effects. The coil was located and removed at the birth. I still really struggle just before my period and don't feel better until a good few days after. Most people would call this PMS, but I don't remember feeling this bad prior to having had the Mirena. I can only hope that my Son has not been affected by the hormones of the coil that he was exposed to whilst in the womb. I tell myself that the very fact I fell pregnant must have meant that the coil wasn't doing its' job properly! And thank God it wasn't. The only good side effect I have had from this evil thing, is the most amazing baby in world. :)

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  3. Robin--I am so happy to hear that you are doing so much better! I can't wait to make the post that I am 95% better! I'm getting there...slowly but surely!

    Anonymous--Wow...what a scary time that must have been for you! I am so happy to hear that you were able to have a successful pregnancy, and that the Mirena didn't seem to affect your baby in a negative way. God is good and was definitely looking out for your little man! Keep me updated!

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  4. I'm so glad to have found your blog. I really could kick myself for not doing enough research on Mirena. I had it for almost 4 months and decided to have it removed when I noticed how angry and depressed I was. Worst of all, my hair was falling out and would not stop. It has only been 2 weeks but now I'm feeling more anxious and depressed and it doesn't help that my hair keeps shedding. Does it mater how long you have the Mirena? I hate that I can never find posts from women AFTER removal so thank you for this blog. It gives me hope that things will get better.

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  5. Anonymous--I don't really think there is a "number" regarding how long you have the Mirena vs. how many symptoms you will get. Obviously, it makes sense that, for each woman, the longer you have the Mirena in, the worse your system will continue to break down....but by what I have learned from Dr. J., a lot is also dependent on how each woman's particular body is able to fight back. So.....some women have it in for years and feel better right after removal, but I also know women who were worse off than I was and they only had the Mirena for half of the time that it was in my body. Each woman is different, and it all depends on how your body is able to fight back. Hope that helps.--PM

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  6. My hair has been falling out like crazy. I am 6 months post removal. Have you found any solutions to the hair loss problem?

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    1. Unfortunately, no, I still notice that my hair sheds like crazy. Every time I wash my hair, it literally wraps around my fingers and just pulls out in large amounts. I haven't tried anything specific, but I have heard from others that they used the hair products from Bosley (the company that does the hair implants--they also sells hair growth products), and they said that they had good results with it. If I keep losing it at this rate, I may have to give it a try. Let me know if you do.

      Hope that helps--PM

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  7. My Name Is Lisa Spitzer. I am a Medical Social Worker and I manage a number of sites helping women who have been hurt by dangerous drugs and medical devices. I hear from women on a daily basis regarding the horrors of the Mirena Silicone IUD and have written extensively on it. I have a Mirina IUD Helpline for women Injured by the Mirena. One of my site is breastimplanthelpline.com. In reviewing some of the silicone toxicity issues with silicone implants it becomes interesting to note how many of these symptoms are very similar to those from the silicone breast implants. I also oversee vaginalmeshhelpline.com. There are so many dangerous drugs and medical devices harming women that we must stand up and demand justice. Please contact me regarding your Mirena IUD complications. The Mirena IUD Helpline is here for you. We can help you connect to a Mirena IUD attorney. 1 877 522-2123. I am also hearing from husbands and boyfriends concerned about their loved ones. We are here for you 24hrs 7 days. You must come forward in order for the FDA to hear us as a group and do something about all these dangerous drugs and medical devices harming women.

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    1. I am one of the women here because of saline breast implants. Saline implants are really Silicone implants with saline in them. I got horrible health problems from saline implants and had them removed 5 years ago. Immediately my foul urine odor went back to normal upon explant, but my other symptoms of severe insomnia, severe head neck and back pain , muscle stiffness, and brainfog have gotten worse and worse. I want to SUE MENTOR implants because they KNEW these implants could cause autoimmune and hid the studies. I would like any info you have on any attorneys that could help me out here. Thank you.

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  8. see http://vaginalmeshhelpline.com/mirena-iud-another-dangerous-implant-harming-women-like-the-vaginal-mesh

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  9. Help! I had the Mirena from Nov 24th, 2011 until Jan 11th, 2012 when I had it removed due to extremely intense heart palps, anxiety attacks, dizziness and nausea that lasted for days on end. I had it placed to slow my monthly flow due to a fibroid tumor and during this time had checked myself into emergency twice for what felt like heart attacks, they kept me for 6 hours and found no issues with my heart after X-rays and a 24 hour holt monitor. Leading up to my surgery, I saw an internal medicine doctor who told me he felt it was the hormone in the Mirena and that the symptoms would subside however I had my first period a week after my myomectomy with no issues. As I further recovered, I started to feel pretty good barring the nausea and then 3 days ago my second period since surgery began and all hell broke loose!! It started with a major anxiety attack on day one that I had to drug myself & nausea ALL day. Day 2 of my period, I was sensitive to food smells and wanted to vomit at the smell of a grilled cheese sandwich which is my tag comfort food so not sure what that was about & of course had round the clock nausea. Today came the migraine from HELL that had me in bed all day! I need help, I can't take this anymore. I have gone from a successful career girl and single mother to an invalid who spends says at a time in bed. It is important to mention that I have NEVER suffered these issues before and have a very resuming nature as a result of tough life circumstances but how is that I only had this monster in my body for 1 1/2 months and I am still paying for it almost 4 months later. How is it that 6 doctors couldn't give me an explaination for these symptoms but when I say it's the hormone in the Mirena, they just laugh, pat me on the head and send me in my way. Why was the internist the only one who would admit that it was the Mirena? Can anyone help me? I have to back to work in a few weeks and I am just beside myself. Also, could it be linked to my period? though it seems inconsistent with my last period in Feb, it just seems strange that I got my period and all of these awful symptoms have returned...

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  10. Hi ladies, I too had hair loss with the mirena, I was searching on the net and someone recommended mane & tail deep moisturising shampoo and conditioner. I have been using for 4 months now and can honestly say my hair is much thicker and healthier looking,it's definately worked for me :) x

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  11. Hi Ladies
    i had mirena for 2.5 years. It took six months for debilitating panic attacks to fade. Over the next two years my depression developed leaving me in tears at the drop if a hat. My hair started falling out at the two year mark when the nausea and fatigue were out of control. I had the mirena removed on xmas eve 2012. the best xmas present I could ever have. I bled for three week straight after 2 years of no period and constant thrush. I feel as if my system was flushing the poison out. I still have weepy moments but can control them. I am the owner of my own destiny again. I have less hair loss already just a month later. Removal was the best thing ever. Thankyou all for your words of hope that gave me the courage to take charge of my body again. I even smile and laugh now.
    Sylvia x

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  12. Hi Ladies,
    I just had a quick question. I had my mirena removed over a year ago and before I had it put in my periods were very light. But since it has been out my periods are so heavy and they always have tons of blood clots in them now. After I got it out I asked my doctor if the clots were normal and she said yes but that the clots would go away with time. But like I said I have had it out for over a year now and there are still so many clots. I also deal with Hair lose from it. I ended up getting my mirena out after 3 years cause it broke through my uterin wall. And to top it off after several times of being to the doctor and the ER and them telling me that it was fine and where it needed to be when I finally insisted on having it out that is when they found out it was through my wall and that it wasn't even in the right place. Please let me know about the clots cause it scares me.

    Jessica

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  13. Hi everybody,

    Thank you all for sharing your stories, you give me hope and strength to not let this thing ruin my life. I wish you all the best and I hope you find relief soon. I had the Mirena placed in Jul 2012, due to severe Endometriosis, and had it removed Jan 2013. I am 7 months Mirena free. I had every side effect you all know about. I think the worst part about my experience has definitely been the aftermath. I have never felt like this before in my life. I go through mood swings, where I'm happy and then sad, and sometimes when my partner and I fight, I feel lifeless. This is so not me, I love her dearly, and I am so in love with her, she has been my biggest support during this whole nightmare, but I just don't feel like myself, like I'm trying so hard to just BE. I have lost interest in all the things I use to enjoy. I have no reasons to be depressed, I am very happy with where I am in my life, but I think the Mirena is working overtime. I could bet that my hormones are trying to rebalance themselves, and this is the result, a huge chaotic mess. I just want the old me! I promise to come back and update as soon as I start to feel better. MY thoughts are with you all xoxo

    -S

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  14. Hi everyone,

    I am also 7 months mirena free. I've had it for over 3 years but only noticed the symptoms in Oct 2013, which was pretty much the same as most of your symptoms. The main things were fatigue, zero libido, depression, anxiety, brain fog, insomnia and some more. Finally in December 2013 I requested it to be removed and had to insist that I wanted it out. I got it removed Feb 2014, I always felt that I wasn't comfortable with the mirena in but kept it in there. I figured that I had a good chance for my body to regulate my hormones since my symptoms just started at the time. Now it's 7 months later and although I do feel better now that it's out I still don't feel like the old me. I'm only 35 years old and have no family history of early menopause. I feel like the sexual side of me is dead I have no urges or sexual appetite although it was really healthy before the symptoms started last year. I feel like I'm impotent, which is a better way to describe it. Did anyone else do any detox or flushes to help get the mirena toxins out of the body? Or is this just a waiting game? I'm really worried and I don't want to start using anything hormonal to get my libido back. I'm hoping that my body will start to work back to its old self again :(

    Praying for a miracle
    DJ

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  15. I have had the I'd for little over a year.. I have just experienced blood clots and h e heavy bleeding, plus many of the other side effects without knowing they where caused from the I'd. Should I go to the ER??

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  16. I had my mirena for 4 years and recently had it removed in a quest to determine the cause of my chronic pain. As I sit here reading all of these posts, tears are rolling down my face. This was my second IUD, the first was the copper one. When that one started moving, my dr recommended the Mirena. I honestly thought it would be the same as my 1st IUD and didn't even question it or think to ask about side effects. For the last several years, I have suffered from severe, unrelenting chronic pain, no energy, brain fog, headaches, hair loss, anxiety, panic attacks and an over all change in who I am. I have literally spent thousands on doctors just trying to figure out what's wrong with me only to be diagnosed with Fibromyalgia and anxiety. Not once have my doctors ever even suggested that any of my symptoms could have anything to do with the mirena. This year I finally met my annual maximum out of pocket on my health insurance and decided to have my mirena removed and get my tubes tied just in the off chance that the mirena, a foreign body, could have something to do with the awful way i feel. I sit here crying now for many reasons. For years I have suffered and my family has suffered along with me. It's hard to explain to people that you feel miserable and aren't yourself and for no reason. I've had to leave my job because I couldn't in good conscience continue calling in sick. I have felt completely crazy, like this was all in my head and have been looked at like that by doctors and people who don't get it. I'm so angry and feel like I did this to myself because I didn't research putting this thing in my body before just agreeing to it. I'm angry that doctors recommend things and don't make you aware of all of the potential risks, risks that can be life altering and last a very long time. I'm afraid that I'll never be myself again. A small part of me is hopeful that the effects of this horrible thing will eventually work their way out of my body and give me my life back. I feel dumb for being so trusting and worried about all of the other medications I've been put on to try to fix all of the medical issues that have occurred because of the mirena. I'm so happy to have found this forum, I truly had no idea and had resigned myself to finally accepting that physical pain was just my lot in life. Thank you all for sharing. Today, I finally know that i am not crazy, how I've been feeling is real. How can we help other women be completely informed about Mirena and the awful, long lasting effects before they make the decision to have it put in? I would never wish any of this on anyone, it has changed my life in ways that I never could have imagined.

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