Tuesday, October 28, 2008

My Mirena Experience

When I first heard about Mirena (intrauterine contraceptive), I was excited. Mirena is a small plastic device the size of the palm of a hand that stays inside a woman's uterus for up to five years to prevent pregnancy. I had researched the product thoroughly and thought it would be the best type of birth control for us. After having my son, I had Mirena inserted during my six week postpartum doctor appointment. I remained happily on Mirena for 18 months without any negative side effects. One day I suddenly felt an enormous amount of pain and pressure in my left abdomen. After going to the doctor, I was referred to an ultrasound facility because the Mirena strings were not visible. At the ultrasound facility I was told there was no Mirena to be found and was continually asked if I had removed it. Of course, I answered no and was very concerned. Next, my doctor sent me to the emergency room where I underwent a cat scan. The test revealed that the Mirena IUC had migrated out of my uterus and was lodged in between my left ovary and fallopian tube. I was completely shocked and terrified by what had happened. I had previously researched this product and had never read any information about the device migrating. I felt let down by my doctor, and most of all the company, Mirena. Not only did my husband and I not have functioning birth control, but the possibility of future children was now at risk. When the doctors finally found the device in my body, I was informed that the only way to remove Mirena would be through surgery. Being a mother, student, wife, and photographer this was horrible news. I had simply wanted to be responsible and prevent pregnancy, not end up needing surgery because of my choice in birth control! Completely outraged and scared, I underwent the surgery. I missed two weeks of classes during my senior year of college, several weekends working at the portrait studio, time with my son and husband, and suddenly found myself in enormous amounts of financial medical debt.

I'm curious to hear if other people have had negative side effects with Mirena? Also, what information doctors are telling patients about this product? Please feel free to leave any comments for discussion.

23 comments:

Jenn said...

jackie! i'm so sorry to hear about that, it seems like a really scary situation. i personally don't have any experience with mirena, but i've heard a lot of other negative stories about it. a few women ended up losing it into their system because it slipped (somehow), although their experience weren't as bad as yours. and A LOT of women ended up getting pregnant even with it in. one woman ended up having triplets!

sorry that was kinda long, and like i said, these are just stories that i've heard from other woman. and i don't think i've ever heard of a positive experience, which makes me wonder how mirena can even be a choice for safe birth control.

anyway, hope all is well now, and your son is so cute!!

-lupo

Anonymous said...

Hi Jackie,
I had a friend with a similar story. She had the Paragaurd, the copper IUC, and it had perforated the uterus and was floating around in her abdomen she had the same situation happen and needed the surgery. The odds of this happening are something like 1 in 1000 cases. I have many friends who have IUC or IUD's and never experienced this problem. I'm actually planning on getting one at my six weeks post-pardom. I'm so sorry you went through this, now that I think about it it's scary I now know two people who have gone through it. I talked to my OB about the situation and they seem to think it's hardly an issue.

I hope everything is fine now, it seems terribly inconvenient. What, if you don't mind me asking, are you doing now for birth control? Are you taking the pill? I'm curious what options your doctor suggested.

Jackie said...

What's really interesting is that I've heard both positive and negative stories about IUD's. I even had the surgeon suggest that it was my doctor's fault this happened, as he hinted that she inserted it incorrectly. I really just want Mirena to list this under the warning section of their product. I feel very strongly that this is a potentially serious risk and my decision for this birth control may have been different if I had known.

I also find it very interesting that when asking doctors about birth control, they don't really dwell on the negative side effects. I've experienced that many of them highly suggest the product regardless of concerns. Currently, I'm taking a birth control pill in order to prevent pregnancy. It seems there are negative effects of all birth control. For example, the pill has hormones which cause me migraines, along with a less effective rate than Mirena. However Mirena was painful to have inserted and ultimately cost more pain and money than it was worth. Though some birth control is clearly more reliable and desirable than others, I wish there was an easier way to be responsible without having to risk my health.

SMTN said...

Jackie, I am happy you told your story of what happened! You can now inform other women of this situation and hopefully doctors will have an explination and a cure so that no one else would have to go through this painful time. Although you did have this happen to you I never once saw your life skip a step. Thanks again for telling your story!

Nicole said...

Jackie first I want to say that I am so glad you are okay. Your happiness and health are most important here. I have myself have no experience with thsi form of birth control. I am currently on the pill (orthotricyclen) and was previously on the orthoevra patch. Throughout my years on these products I have never had any issues. I guess I am lucky when it comes to side effects from these. Also, I remember years ago before beginning pills, and later when I switched to the patch, my doctor went over all the possibilities of birth control as well as the positive and negatives. I think it is the doctors responsibility to inform his or her patients of all the possibilities, including, in your case, migration of th iud. Additionally, I am wondeirng if you received any literature from the company about the product before you had it inserted that listed this as a potential risk. If Mirena does not list this as a side effect that they are at fault, I would think, of not fully informing their clients.

I am interested in the fact that eve here on this blog someone who has heard of 2 bad experiences is still considering using the product. I understand statics say the risk is small but what if you were that 1 in 1000? With all the stories floating around it seems like it is more than 1 in 1000.

Kenneth Brooks said...

Miss Jackie, I do not know you personally, but Nicole can vouch for me if you have questions.

One post mentions that similar results occur in one in every 1000 uses. I do not know how accurate this figure is, but if it is, on should be able to successfully prove negligence on behalf of Mirena and possible the doctor that preformed the procedure.

What information were you given by your doctor? Specifically, were you given a document that would amount to a product warrenty? At the very least you should be able to collect the funds that you are out (including interest) from Mirena, if you agree to settle outside of court. They would make you sign a gag agreement, but that may be worth the cost. Otherwise, in a trial setting, I would estimate a 80 percent chance of winning a judgement for medical costs incurred (plus interest) and about a 50 percent chance of collecting pain/suffering damages of under 10,000 USD in addition to medical fees. If you wanted to take this all the way, a tort action could be filed with a request for punitive damages. If successfull, you would be talking a lot of money. (8 figures) but you can count on Mirena sending the whole legal team to work on that one. Your safest bet is to get Mirena, and your doctor's insurance to settle out of court so that you can pay off your debts.

I hope you are well, and your situation does not become worse. If you have questions, you can contact me through Nicole Williams.

Kenneth Brooks

Kenneth Brooks said...

Pt 2.

I have been doing some pretty heavy research into this matter. The big factor that things keep boiling down to is liability. I have some questions for you that can help me draw a better conclusion.

Kenneth Brooks

Michelle said...

Jackie,

Although I have not had any experiences with Mirena, I have heard similar stories. That is awful that you had to go through this, and that in general, women are not given thorough or even accurate information that would allow them to make an informed decision.

Because I have endometriosis, I have been on birth control (name one, and I have tried it) since I was sixteen. I have had so many negative side-effects, like excessive weight gain, anxiety, depression, severely lowered sex-drive, skin discoloration, the list goes on. It was not until recently that I realized that these symptoms were side-effects of the birth control pill. When I tried discussing this with my doctor, she casually acknowledged it like it was common and no big deal.

The issue, as you know, is that it is a big deal! These are not individual problems, these are larger social problems! Women's health issues have historically been overlooked, and it continues to happen today. A woman should not have to suffer like you did in order to prevent pregnancy; it simply is not right. Clearly, women's health issues need to be addressed, and I applaud you for starting a very important conversation.

Janine said...

Hey Jackie!
I’m so glad your surgery went well, and I’m sorry you had to go through all of that. I don’t have any experience with ICU’s, but I have been taking birth control pills since I was 14 because I have Polycystic Ovarian Disorder. (I’m now 21.)
I had been taking a pill called FEMCON until this January, when my doctor switched me to YAZ. He though it would be good for me to start taking a lower dosage pill. I did this, and experienced the usual side effects that go along with switching pills (anxiety, mild depression, and mood swings.) However, towards the end of the month I had a 6cm ovarian cyst rupture, causing extreme pain. The emergency room told me it was normal since I did have PCOD, and it had nothing to do with YAZ.
I accepted this and continued taking YAZ. Almost exactly one month later, I found myself back at the emergency room with another ovarian cyst. I couldn’t believe it, but my doctor once again said it had nothing to do with YAZ. Skeptical, I continued to take YAZ. One month later, I was rushed to the ER again. I had 3 large ovarian cysts growing and rupturing! I had to have surgery, and miss almost 2 weeks of classes. Not to mention how much fun the recovery was, I also really enjoy the beautiful scars on my stomach.
This time around I expected some answers as to why exactly my PCOD was under control all of those years on FEMCON but the second I switched to YAZ, everything was thrown out of whack. Needless to say, I told my doctor to put me back on FEMCON, because I wanted to see if I developed any more cysts. I have been taking FEMCON since then, and have not had a single ovarian cyst since (knock on wood.) They can tell me that this was a total coincidence all they like, but there is no doubt in my mind that YAZ put my body in those situations. Since YAZ is also a very new contraceptive, I think that raises major red flags.
I hope this helped! Your son is getting cuter and cuter by the way!!!
-Janine (from mercy )

Kendra said...

Didn't I used to make jokes to you about babies being born with those IUDs implanted in their heads? Not so funny now... Okay, it was never really funny, because that stuff really did happen in the seventies.

Anyway, my mom had Norplants back in the early-to-mid nineties, and when she went in to have them removed, the implants had actually moved all around her arm so that the extraction surgery was way more complicated than promised. I think she had some other complication, but I really can't remember right now. I'll find out.

Precious Pink Pumps said...

I had my Mirena put in over two years ago - I have loved it. It has been very easy and the absence of a period and no mood swings has been lovely. Just this week however I have been bleeding and clotting very heavily. I am googling a lot of info but I getting more and more concerned. So will go to the Doctor. I had never heard of a migrating Mirena before. That is scarey.

Emily said...

I've never had a IUD, but a friend of mine has for a few years without problems.

I think the information given or not about birth control is really interesting. I had all sorts of issues, including intense migraines, when I began taking birth control. I knew they were possible side effects and my doctor was quick to change my prescription when I mentioned them.

What no one mentioned to me was the fact that since I am "overweight" many traditional birth controls are not as effective for me. Thank goodness I go hooked up with a fat friendly doctor who told me of this problem and recommended a good solution (Nuvaring) that has cut down my side effects HUGELY and provides me with more comfort in knowing it will be effective.

I think it is wacky that we can do research and ask questions, but we still don't always get the information we need from our doctors.

Anonymous said...

Hi Jackie,

I think it is good that you have posted about your experience. I wonder if you'll be able to connect to others. What will you do next?

Jackie Grutsch McKinney

Anonymous said...

Hi jackie. I am really glad I found your post and blog. I am having something similar happening with my mirena. My OBGYN feels and has proven that my iud is slipping, and that is causing a lot of pain, not to mention the extreme mood swings, the weight gain, increased headaches, the works. The only good thing about the mirena so far, I haven't had a period in like 2+ years. I will miss that, but I have an appointment to have it removed. I would rather run the slight risk of getting pregnant on the pill than worrying about this thing either coming out on its own or having it puncture my uterus or migrate to other portions of my body.

April said...

Thank you so much for posting Jackie! When I went to my appointment on Wednesday they couldn't find my strings for my IUD. I had a lot of pain the first few weeks I had it but knew it was a common side effect so I just wrote it off as that. I went for an ultrasound the next day and they couldn't find anything. The xray showed that it was out side the uterus in my abdomen. I will have it removed next week surgically. I too am breastfeeding my baby (had the IUD inserted at 10 weeks postpartum) and I'm really concerned how the surgery is going affect that. I can't get her to take a bottle! How long did you have to wait to feed your son after surgery?

I'm not sure what to do about birth control next. I think I might go back to the mini pill.

Thank you again for posting your story!

Anonymous said...

Hia Jackie. I'm excited that I found this site. I too am going through a very similar experience. I had my Mirena inserted at my six week postpartum check up as well. I've only had mine in for a little over 4 months now, but have had nonstop problems with it since it's been in. Well I decieded to have mine removed because of the side effects I have, and also because I did a lot of research and only heard bad things happening. So at the Dr. appointment they said they could remove it and of course I said yes, please. Well after tugging at my stings for awhile, they said it's stuck. The Dr. said let me just try one more time here, and pulled so hard she actually pulled the strings off of the IUD!!! So they sent my to see an OB/GYN, and he could not see anything. I had transvaginal ultrasound, they too found nothing. Then I had an xray, where they found something, but wasn't sure where it was for sure. So off to a CT Scan for me. The CT Scan shows that the IUD is half way in my abdomen, and half is stuck in my uterine wall! Which the OB/GYN is pretty sure that is how it was inserted! So now I go for surgery next week to get it out through a Laparoscopy! Which my husband and I cannot afford, or have the time for, but what choice do we have! They said it shouldn't affect having children in the future, which they better be damn sure of, or I'm going after them for it! My Dr. did not tell me any of the risks either, which I did continually ask about because I didn't know of any at the time. As for birth control afterwards, I did a lot of research, and my husband and I decided to use the Fertility Awareness Method. Which is just a natural birth control. If anyone is intested, I learned how to use FAM from the book Taking Charge Of Your Fertility by Toni Weschler, MPH. I would highly recommend this book for anyone having problems with their current form of birth control. Or check out the website www.TCOYF.com as well. I will keep you updated on my situation. I was also curious, if you don't mind answering this question. Did everything work out so that you still are able to have more children without any problems? That is the biggest concern for myself in this situation. We definitly want to have more.
Thanks. Danyilla

Anonymous said...

Hello Jacky. I feel your pain. I had my Mirena IUD put in place last December (3 months after I gave birth). I thought it was a great option, and since I have never had any health problems, I went for it. About 3 weeks ago (7 months after insertion) I started feeling cramps and got my period for the first time. But then a few days ago it was actual pain. So, I started suspecting that something had gone wrong with my IUD. I went to the doctor and they can not find the Mirena IUD. It has obviously migrated somewhere and I am having an ultrasound today. I hope it has migrated to a spot that they can remove without surgery, they might need to use forceps. But, this is such an unnecessary health risk. And I also agree that the doctors and the FDA are not doing their part letting us know the risks and how common they really are. I honestly believe that the statistics based on clinical trials on this device, could not possibly be accurate. Once I got back from my doctor's appointment, my co-worker told me the same thing happened to her. How come we hear about it so much when it is supposed to be a rare case? There is something wrong here and with the information being provided to the patients. What unnecessary risks they are putting our health and lives through! I hope I do not need surgery. It will disrupt my life, my work, time with my daughter and husband, my income. Completely no necessary. I will wait for this to resolve and then file a complaint with the FDA.

Anonymous said...

Hi Jackie
i'm a medical doctor in South Africa.
Last week i went in to see an orthopaedic surgeon about pain i have been having in my right hip. He sent me to have an x-ray because he suspected that i have a problem with my facet joints at L4-L5 level. The x-ray revealed that he was correct about the spine BUT also revealed that the mirena i had inseted 5 years ago was sitting near my left iliac crest!!!
After confirming this on ultrasound - i was advised by all doctors concerned that it shoud be removed.
Last friday i underwent laprascopic surgery to remove the mirena and .... guess what... they could NOT take it out
It's now migrated towards my left rib in the region of my spleen!!!
I went back to work today (only managed to see 2 patients) and now with this "rapidly moving" mirena in my abdomen i have been advised (by a general surgeon now -its no more gynaecological!) to have it removed -
So - next plan of action is to have a LAPAROTOMY - with a life long scar that no-one knows how big it will be.. just to remove the mirena!!!

naseeba

Anonymous said...

I had the Mirena IUC for 3 years now and I've been in pain every since I got it. The first time I went back to the doctor was to complain about it causing injury to my fiance (ouch!) and about the on and off pain I was having. She cut the strings back and told me that the "mild cramping" was normal and sent me home. Three weeks later I returned with the same complaint about the pain and that it was more constant than before. She pretty much said that the cramping was all in my head, told me to take some Motrin, and sent me on my way.

At this point, I was furious and refused to go back. I am with a new doctor and I had a papsmear done. Where's the IUC strings??? More like where's the IUC. After getting an x-ray on Friday, it seems that the IUC has migrated to the right. Exactly where I had said the pains were. What to do now? I'm not sure what's next. How safe is that?

Anonymous said...

Jackie,
I have a very similar story to yours. I am waiting to hear when my 2nd (that's right! my second) surgery will be due to using the mirena iud.
Please email me at pinkthoughts@hotmail.ca
We should connect and try to find other women who this has happened to.

Anonymous said...

Hi Jackie,
Thanks for sharing your story!
I got Mirena about 3 and a half to four years ago. The experience was horrible mostly due the the doctor I was seeing and her lack of communication in preparing me for what it would entail. She did however mention to me the very rare possibility that it could puncture my uterus. I blew that off and thought, "I can't wait to not have my period!" Unfortunately I had a horrible experience getting it put in (she needed to use two devices since something happened to the first one, she left me alone in the room multiple times, she never told me it would be painful to put it in etc.) A lot of this was due to the doctor's inexperience I believe. I definitely still got my period. In fact I bled for months pretty much straight. Then I had my period twice a month for quite a long time. Eventually it slowed and seemed to go back to a more normal schedule. Recently I had more problems and cramping or periods more than once a month. This and the stories of Mirena coming out with a baby being born scared me into going to ask about getting it removed. I talked to a great Nurse Practitioner and she was unable to find the strings nor "fish them out". I really have never felt the strings and I know that when I went in for a check up a few weeks after it was put in they were unable to find Mirena and had to do an x-ray. So, this week I had to get an ultrasound and an x-ray and it is floating in my abdomen. I have no idea how long it has been there. Has it been there the whole time?? Or just a few weeks or months? I have had no viable birth control as long as it has been out of my uterus. I will also need laparoscopic surgery. The gynecologist/surgeon I just saw told me that there is a one in 10,000 chance of this happening.

My sister had Mirena for a short while and liked it except that it was bad for her skin. Another friend has it and loves it. But, my experience has not been so great. Is that because of the doctor who was not experienced enough and did not prepare me for what was to come, or because of the dangers of the product? I don't know.
-Emily

Cecilia Ryan said...

I'd like to know if you have an update ? I am going through this right now, I just had surgery in march.2013. And am looking for more information lime if you were ever able to conceive after all this? I am terrified I won't be able to have children.

Jackie said...

Hi Cecilia, I found the healing process to be relatively smooth. It was more comfortable to heal from surgery than to feel the Mirena in my abdomen, personally. I'm happy to say that I was able to conceive and have a healthy pregnancy after all of this. My second son, Parker, was born April 20, 2011 and we had no problems getting pregnant. I'm sorry you went through this horrible process but I hope you find peace in knowing you will likely have children without problems relating to the Mirena.