Friday, January 21, 2011

My Mirena Story (A Cautionary Tale)

DISCLAIMER: I really don't like talking about this (I'm a really personal person), but I feel it is good to get my story out there, especially if it might help someone else to make a better and more informed decision about this type of birth control!

Okay so story start just before my son Cyrus was born, a little over two years ago. At what ended up being my last regular doctor visit before he was born my Midwife asked what we planned to do for birth control after the little guy came. I had honestly never given it a second of thought. I guess I just always thought I would go back on the pill like I was before we started trying to have a little one. She told me I essentially had four options: The shot (which I was very much against due to large amout of hormones and some friends terrible experiences), the progesterone only pill, an IUD, or nothing (including barrier methods, and natural family planning). Well we knew that we were going to want to wait a while and she knew we were planning on breastfeeding so she strongly recommended the IUD. Now I was so very out of the loop on birth control methods, as I had been so very far from needing them for most of my life, that I had never heard of the IUD. SO she gave us some info to mull over. It turns out there are two kind currently on the market, a copper coil 10 yr one (Paraguard) and an all plastic hormone releasing 5 yr one (The Mirena). Despite misgivings about the safety of the devices from my parents (I honestly didn't have anytime to ask anyone else before I made a decision, oh MOPs friends if only I had known you then!) my midwife convinced me the Mirena was my absolute safest and very best option! And me, the self diagnosing, Web-MD, internet junkie that I am, I did NO FURTHER RESEARCH on the matter. WHAT WAS I THINKING?? So in a disturbing turn of events we were informed by our insurance that they would not cover the procedure if my Midwife did it (which she thought, as we did, was ludicrous) so I was sent to a brand new Dr. I had never before met. She entered the room like a bumble bee, dressed in what my husband deemed a most inappropriate manner (really stilettos and a mini dress to work?) she talked to us for no more then five minutes, took a painful measurement of my uterus, replied that she must have measured wrong and took a second measurement, loaded the Mirena and inserted it. I experienced sudden excruciating pain! Seriously similar to child birth pain! This was the "slight pinching" I had been warned about?? I couldn't stand up straight it hurt so badly! Hubby asked "Is this much pain normal?" scantly clad Dr said it was and recommended some Advil. Hubby basically carried me to the car were I sat in a ball trying to think past the terrible cramping I was feeling. We got home and I discovered that not only was aI cramping but also bleeding very heavily, like post baby heavily. The cramps lasted all day and into the night, and the bleeding lasted almost two weeks. I have since found out that while it is common to have some cramping and bleeding, what I experienced is not common and... well I'll explain...
A month later I go in to have the device checked by the same Dr. She tries twice to find the strings, while telling me that it is common to not be able to find them (I have never been able to feel them) as she has cut them very short. On her third try she claims success and tells me the device is where it should be! I tell her that I don't really like it, and ask when the spotting will spot, She tells me "Oh soon, soon" and to give it more time... so I do. At my 6 month postpartum checkup I tell my midwife that I am unsure about the Mirena, and worried that I can't feel the strings, she tells me not to worry and to give it more time. Hubby gets a job at UNMH and we switch to LoboCare Blue Cross Blue Shield. (The aforementioned Dr, Midwife, and insertion all happened be at the Lovelace Woman's hospital) by this time I am VERY unsure about this Mirena, as I began to wean Cyrus my cycle started back like normal, not lighter (or not at all) like was promised of the Mirena, I m also feeling some strange side effects including depression, some more personal symptoms, and more troublesome increased anxiety. On my new patient visit to my PCP I tell my new Dr that I am still not sure about the Mirena and could it be causing the symptoms? She thinks this is very unlikely since the hormones it releases are very localized, and tells me for the third time (from the third Dr) to give it some more time. Flash forward one year, I am having serious doubts about the Mirena, mostly due to SEVERE panic attacks, that seem to come from nowhere (serious it feels like I am going CRAZY) and some extremely disturbing dreams about miscarrying because of the Mirena or about it falling out and not noticing. I have now gone online and read horror story after horror story about Mirena side effects. Most of all I learn I am not alone. Hubby and I talk about it A LOT. He is very concerned about the panic attacks (after all he spend night after night working with psych patients), after sitting next to me in bed while I experience one we decided together, it is time to get this thing OUT!
Just about two years to the day of getting it in, I go to my Dr (a new one, my first PCP has finished her residency and we have a brand new baby resident). I tell her the symptoms and she LISTENS and AGREES that it is time to get it out! She goes and gets her supervising and they come into remove it right then! I'm loving her so much for finally listening to me, yet at the back of my mind there is a voice telling me (and I honestly believe this was the Lord preparing me) "It's not there. They aren't going to find it. But don't worry it will be okay." And shocker, they can't find it! But they tell me not to worry, this happens all the time. They ask when was the last time I felt the strings, and I tell them that I have never been able to, and that the Dr who inserted it told me she cut them very short and I probably wouldn't be able to. They let out big sighs and say, "Oh that is good news, I'm sure that is is just short strings" they send me to UNM's elite IUD removal team at the Center for Reproductive Health. Our first appointment the resident reassures us, this happens all the time. He looks for it and can't find it. He goes to get the ultrasound again I heard the voice "It's not there, he won't find it. But don't worry" and after an extremely embarrassing internal ultrasound (much sympathy to all of my gal pals who have ever had to endure this) they again CAN'T find it!! So now the Attending comes in. The esteemed Dr. Singh, the IUD expert. She tells me there are three possibilities. The most likely, it fell out and I didn't notice (to me this seems unlikely as I am pretty sure I WOULD have noticed), the next more likely but rare, it is embedded in the lining of my uterus (I find out this is more common when used while breastfeeding, and when device is inserted within the first 6 month postpartum, mine was inserted at 8 weeks postpartum) , and the last most unlikely, it has perforated my uterus entirely and is free floating in my abdomen. So they send me out for x-rays. I know in my head and in my heart that it is still in my body. SO when the resident calls to tell me that they have located it on the x-rays I am not surprise. He tells me not to worry and that by the location they are assuming that it is embedded (completely encased) in the wall of my uterus, so they send me to ultrasound, where I undergo an abdominal ultrasound and another terribly fun internal ultrasound. Again the voice in my head says "It's not there, they won't find it. Don't worry." And I call tell by the look on the tech's face as she goes around and around that she can't find anything. So even before the Dr calls I already know... it perforated my uterus. The clinic calls with the news, and as they ask me questions about me insertion, they are sure, and I am sure that it has never really been in the right place. In fact they hypothesis that she either partially perforated my uterus at insertion and the contraction of my uterus due to breast feeding pushed it the rest of the way out, or she completely perforated at insertion and was not honest about feeling the strings at my followup. Only the Lord really knows for sure what happened! SO they send me for a CT to triangulate to exact position (adjacent to my uterus next to my right ovary) and I go back in the clinic where they explain how they will remove it by laparoscopic outpatient surgery, which they schedule me for.
Yesterday I checked in for surgery at 9:45am and we were done by 3:30pm. Every single person that helped me yesterday was absolutely amazing! And I felt the prayers of all my friends and family! I know the Lord was with me, just as he has been all along. I didn't choke the night before and need to drink water (the ladies in my small group know I was very worried about this!! lol) and Todd was able to sit with me the whole time in preop which made the time go by so much faster! (And poor guy, he was so tired as he had just got off from a 12 hr shift and hadn't gotten a lunch break) I was in surgery for 45 mins and the amazing Dr Singh (I truly believe, being led by our amazing Lord) found it without incident and GOT IT OUT!! And today, after more then two years, I am MIRENA FREE! Praise the Lord. (Insert two gross pictures! The first is the pictures from the surgery of them grabbing the Mirena and then of my guts Mirena free! The Second is my dyed belly with my 5 mil incisions)

So here is why I am writing about this. First: for anyone considering an IUD I want to encourage you to do your research, and to REALLY pray about it!Which is something I am ashamed to say I never did (well beforehand, I have spent many hours praying about it since then!). Spend some SERIOUS time prayerfully considering this option and do LOTS and LOTS of research! Ask lots of questions! Read every message board you can find! Ask all of your friends, boy, I wish I had!
Second: If you do decided this is the right thing for you, be VERY VERY careful where you go to get it in! If your insurance covers it I really would recommend going to Dr Singh or one of the other Drs at the Center for Reproductive Health. Because they are careful, and they they know what they are doing and they listen to your concerns. And while I won't ever be getting another one, if I was I would go to Dr. Singh. Make sure you ask your Dr about their experience, and ask around (even look it up online). I'm much to trusting and through this I have learned not all Drs are created equal. And listen to me sisters with free (government health care) just because it is free doesn't mean you don't deserve to be treated well, and listened to!
Lastly I have a more universal point... God is always with us! I learn this more everyday and in every way! He was with me when I had it put in (even though I never bothered to include Him in the decision), He was there with me through all my misgivings, and I truly believe He was there keeping me from getting pregnant all these months while it was where it was not supposed to be, and He was there giving me crazy bizarre dreams and promptings to get it looked at! And He was with me through all my panic attacks, and He was there with me when the fourth Dr FINALLY listened to me! And He was with me in the CT tube, and ALL day yesterday! And He worked through all of my dear friends' and family's prayers. And I was calm and not fretful for the whole procedure! As my dear friend Michele (who can speak so much to this in her own life recently) just said on Tuesday as she talked about her call rolling over 5 times on Paseo. God wasn't just there as her car rolled over and He saved her life and kept her precious girls from even getting a scratch, but He was there with her everyday that she was at home with four girls feeling overwhelmed and lonely. It is so easy to see Him is though or scary times, but He is always with us! Even in the still and quiet and mundane things! AMEN! That is something I needed to be reminded of! God is good! All things work to His glory!

26 comments:

  1. Wow, Sarah, I had no idea. A lot of my friends have IUDs and this was an incredibly informative blog...I am so sorry you had to go through all that. :( I am so thankful that you are okay and you are recovering. Love you! <3

    ReplyDelete
  2. I found your blog through an internet search. Thank you for sharing your story. I have been having severe pain for 6 months and was even hospitalized for a week with no diagnosis. After having an x-ray Friday to check my hips (genetic problem) I was told my IUD was not in the correct position and could be the cause of all my pain. Your story has helped me prepare for what might happen. Hopefully I will know more soon. Thanks again!

    ReplyDelete
  3. Sarah,

    I'm SO glad you posted this!! This is so informative and so good to know. We were recommended to get an IUD too and after talking with you, I'm so glad we didn't. I'm so sorry that you had to go through this, but I sincerely hope that it helps a lot of people make an informed decision.

    Love ya, friend!

    ReplyDelete
    Replies
    1. it depends what hospital you go to and who puts it in for you. I have the IUD as well as my godmother and friends. WE love it and we have no problems with it.

      Delete
  4. Thank u for the post. I am going through something similar with the doctors sending me for ultrasound after ultrasound trying to find it. The dr who put it in I believe perforated at insertion as well as I was in a LOT of pain similar to child birth (I was literally shaking) and bleeding for almost 2 weeks afterwards. I also felt a prompting from God to go get it checked as I was not ready for more kids and was actually not wanting it out yet. I just knew for some reason I needed to go in and get it taken out.
    A friend finally took an x-ray for me and it is sure enough outside my uterus and now I have to figure out what to do about it since my insurance doesnt cover the surgery. Do you know how much the operation cost?
    Thank u for your post I am glad to know someone out there understands and can offer support

    ReplyDelete
  5. Thank you for sharing this... I too am going through something like this... I got the Mirena inserted after the birth of my daughter(April 2010)... my Dr made the Mirena sound so wonderful. After insertion I had some pain but not anything like what they say to expect during a perforation. I asked my Dr if I needed to come back in 4 weeks to check it and he told me "Nope, just come back for your annual this time next year and feel for the strings every month." I never knew if I was actually feeling the strings but I had no pain.. I bled for about 3 weeks after insertion, then stopped... no bleeding since. Fast forward to June of 2011 I start bleeding.. this lasts for three weeks, mind you we've since moved to Okinawa Japan(previously in Mtn Home, Idaho) so I call the Dr. I talk to a nurse she says this could be a side effect of the Mirena since I've stopped breastfeeding a few months back. I tell her I want it removed I don't think this is natural, I have the Dr's appointment and my new Dr informs me he doesn't see my strings and do I think it could of fallen out... I go in for an ultrasound... no IUD then I have an x ray done... turns out the IUD is now in my pelvic cavity on the right side. :( Now I'm waiting to hear back from the OB on a different base than we're at and find out where to go from here. I am so scared about everything. We want to have another baby is this going to prevent that? What if this thing is in there nicking organs or I get sepsis? I too wish I'd known more about the risks... since this experience I've been researching online and I think this is grossly under reported and occurs more often than the Dr's like to admit.

    ReplyDelete
  6. Perforations occur less than 1 in 1,000 IUD placements ie it's a very rare event. Also too many doc are pushing the Mirena over Paragard (copper, non-hormonal), hormones have side effects and they compound the rare problems that do occur with IUDs. Many docs poo poo the hormone side effects of Mirena and say it should only be affecting the uterus locally and that it can't effect women systemically, which just isn't true.

    My first IUD was placed poorly, one arm never extended all the way, it stayed that way for an excruciating 3 months until we removed it. My second Paragard has done well for 2+ yrs although it is too long and the bottom of it sit in my cervix. We are now looking to ordering a Flex T, which is far more flexible and shorter.

    In short despite my drama with IUDs I would still pick a copper one for my primary choice of birth control.

    Always thoroughly research your choice of contraception.

    For IUD discussion with other IUD wearing women - http://iud-divas.livejournal.com/

    ReplyDelete
  7. okay i have to be honest.. i only just had mine put it 2 weeks ago mon... im still cramping lightly at times its enough to bring me to my knees but normally i can take it.. i am bleeding lightly but its not alot... should i be worried...?

    ReplyDelete
  8. THANK YOU SO MUCH! I got my mirena put in a week ago and it hurt excruciatingly. When I couldn't feel the strings I knew that something was up. I stumbled across your post and knew I needed to see the doctor. Without hearing your story I wouldn't have been so persistent about getting answers or insisting on the xray when nothing turned up on the ultrasound and they assured me it must have fallen out. Yeah right! Sure enough, it had perforated my uterus and had migrated out to float by my pelvis right where I had been feeling pain. I have another doctors appointment tomorrow and then I hope they will schedule the surgery, I just want the dang thing out. What should I do until then to ensure it doesn't get any worse? Without your story, I never would have caught it this early. I've learned its important to listen to your body, do lots of research before making a decision about birth control and to choose you OB/GYN carefully, experience is much more important than bedside manner!

    ReplyDelete
  9. Wow, as I was writing about my (not so traumatic) Mirena story, I came across yours. Thanks for sharing. Most women know their bodies and we do need to pay attention more.

    ReplyDelete
  10. I am SO SORRY to hear you went through all of that! :( Women really need to listen to their instincts and their bodies... just as Natasha said above; we know our bodies better than anyone else! I also believe God gives us our first instincts so if you feel there is something wrong, there normally is. Am so glad you are doing so much better now.

    I had a Mirena IUD put in on August 8th by a wonderful gynaecologist here in Hamilton Ontario and haven't had a problem. I had some cramping for a few days but took an over-the-counter PMS/cramping medicine and was just fine. I just had my follow-up ultrasound the other day and it is perfectly in place with no concerns.

    I agree women should do a lot of research and praying before they get one inserted... but they should also realize that for every woman posting about a bad experience, there are probably hundreds and thousands of women that had a perfectly pleasant experience with theirs but felt no need to post about it. People are quick to tell others when things go wrong and normally stay quiet when things go well. Just a thought...

    ReplyDelete
  11. Wow that's a huge bummer, it sucks that this happened to you! I'm from Australia and have never heard of this happening! I've had two iuds so far (the mirena and then the copper t) and I've never had any problems and doctors have always been amazing and helpful.
    I'd say your problem was bad doctors not the iud!

    ReplyDelete
  12. Great post! Sorry it had to come from a painful experience. You are right though ... research is key. I wish I had done more before using Mirena. If I did, my body might still be in one piece!

    Here's my Mirena story if you are interested:
    http://www.learning2walkagain.blogspot.com/p/my-story.html

    Thanks for sharing yours!

    ReplyDelete
  13. thank you for sharing your story i have had my implant for 3 months and i have been in terrible pain the whole time and non stop bleeding the docs say to give it more tima and the pain and bleeding will stop. ive had pregnancy symtoms for the last month i have a doctors appointment in a week.

    ReplyDelete
    Replies
    1. i got my iud on nov 30 2015 and i was bleeding for 3 months im currently taking a pill prescribed by my doctor to help stop the bleeding and ive been feeling like im pregnant 24 7 and my stomachs getting bigger but i havent done anything in 5 months and my pregnancy test came back negative the day i got my mirena iud in so its weird

      Delete
  14. Thank you for sharing your story. I also have a mirena horror story. I agree that education is key and not just from drug companies and doctors but from real people who experienced it. I would like to share my story with you also if you don't mind. feel free to read it and link your story in my comments so more people are exposed to stories like yours and mine. thank you,
    Jennifer
    http://4boysforme.blogspot.com/2013/01/my-mirena-nightmare.html

    ReplyDelete
  15. Sarah,
    I hope you don't mind that I added your blog by a link on my mirena story. That way woman have a way to look at all these stories at one time. If that's not ok with you let me know and I will take it off. Love you! Miss you and hope you are doing good.
    Melissa
    My mirena story http://josenmissy.blogspot.com/2012/12/diagnosis.html

    ReplyDelete
  16. BURQUE! I think it depends on the person for me the iud works great i don't bleed anymore no pain hasn't move at all. i love it got it in 2010 and i plan on getting another one in 2015!!

    ReplyDelete
  17. Impressive stuff here. The information and the aspect were just wonderful. I think that your viewpoint is deep, it’s just well thought out and truly incredible to see someone who knows how to put these thoughts so well. Good job!

    mirena recall

    ReplyDelete
  18. When you had your surgery was it painful did they put anesthasia?

    ReplyDelete
  19. I'm another one with a Mirena story to tell. But mine is not finalised yet

    http://wp.me/p2F4Wo-3I


    ReplyDelete
  20. Today every one wants to earn lots of money so to fulfill this purpose many medical device manufacturers are starting to use low quality product and this is really responsible for the Mirena Recall..

    ReplyDelete
  21. since i had my coil fitted ive had nothing but pain in all muscles and joints tingling in hands and feet i was diagnosed arthritis i was of healthy body and mind and cant believe how my health has deteriorated in a year after been fit and active im in pain every day and emotionally upset physically and mentally all these aliments i have might be caused by the marina coil if its right then i want the bloody thing out

    ReplyDelete
  22. Thank you so much for sharing this story, like yourself, I don’t like to share this kind of information much, but your story really did help me.

    I had the Mirena for the last 5 years and a part from the pain on insertion and the pain for about a month after, I found that everything was ok.

    Two weeks ago, my 5 years was up and I went to the hospital gyno to get the Mirena out. Something was telling me NOT to get another one, however since I was in with the gyno, and the assurance that everything would be okay and also assurance that this is the best form of birth control for me, under pressure I reluctantly agreed to get the Mirena replaced.

    As soon as it was replaced, I knew something was wrong, I spoke about this with the gyno and he assured me it is normal to have cramping etc.

    A few days later I went and saw a GP, I told him I didn’t want the Mirena in anymore and I wanted it removed, I told him I felt something was wrong and he advised me to go home and think about it before I make such a big decision and remove it. I went home and thought about it and decided that I really didn’t want it, I still have cramping and, I feel something is wrong, so I went back to the GP, he reluctantly agreed to remove it. He then advised me that he cannot find the strings and I would need to go back to the gyno for internal ultrasounds etc.

    I went back to my gyno today, he asked why I wanted it removed, I told him what I told my GP, I felt something was wrong and I wanted it out, I had been having severe pain in the left hand side of my stomach since the insertion, he then asked me what contraception I would go with, I told him this was the LAST THING ON MY MIND right now and all I wanted was to have the Mirena removed. He reluctantly agreed, once in the chair, he then advised me he is unable to find the strings (this was after 20 minutes of searching), he then proceeded with an internal ultrasound. He found the Mirena on the left hand side of my uterus; he advised me it was on the wall. He again attempted to get the Mirena out for another 10 minutes, after the pain was too much to bare, and the excessive bleeding that had occurred from the first attempt of removing it, he kindly advises I will have to go back in next week to have it removed under anaesthetic. If he is unable to get it vaginally, he will have to attempt to remove from my belly button.

    Needless to say, I am 100% scared out of my brain, as I have never had anything like this happen to me.

    All I can say is that women know their own bodies, and if you do have a Mirena inserted, ensure you read up on it, research, research, and research!!!! Also if you feel that something isn’t right, it’s probably NOT right…. Do NOT let GPs or specialists tell you otherwise. DO NOT listen to them, we know our own bodies, we know when something is wrong.

    I just need to get through this next week and hopefully my life will go back to normal.

    ReplyDelete
  23. I am so sorry you have to go through all that pain and I too heard so many cases like this and this kind of post are very helpful in increasing the awareness among women. Keep posting and keep growing.

    ReplyDelete
  24. This felt like it was me as I was reading it . No one believed me for 4 years my back pain & how much I wanted the iud our. Well it was inside of my colon & to this day ( 6 years ) I have the worst periods & back pain . That thing caused permanent damage And I tell everyone not to get it

    ReplyDelete