Mirena coil has perforated my womb!

[Poppyella]

Hi everyone

I am new to this site today and I thought I would post about my experiences with the mirena coil and to see if anyone else has been through anything similar.

I had my mirena coil put in in May 2008 when my twins (baby's 3 &4) were 4 months old. It was absolutely excruciating and I almost fainted as I got up afterwards. Having had a copper coil before I conceived the twins, which was painful but bearable, I did wonder why the experience had been so different.

Well roll on 2 years later...............2 years of fatigue, mild depression, weight gain, decreased libido and the absolute worst - horrendous irritability, and I mean the worst rage possible, caused by minor things. So having googled irritability and the coil and reading up on common side effects, I decided in March to have the mirena swopped back to a copper coil.

I went to the FPC (couldn't face the GP who has inserted it!) and after 10 minutes of prodding about, they told me they couldn't find the strings. Both she and I presumed they were just too high up the cervix and the coil was still in place, after all it had been 2 years without getting pregnant.

So she sent me for a scan. Abdominally - nothing in utero. Transvaginal - nothing in utero!!! So she thought it must have fallen out so sent me for an x-ray just to make sure. (me, in the meantime, thanking God that I hadn't fallen pregnant despite a missing coil!).

Well, there it was, floating around in my abdomen!! The gynacologist I have seen since is convinced I had it inserted too soon after the birth of the twins (he recommends waiting 6 months so that the uterine lining isn't thin any more). And it perforated during insertion - hence the agony!!!

Well, I am now waiting for a laparoscopy on November 12th to have the thing removed. I am really praying that by doing this, despite it being in the wrong place for over 2 years, my symptoms I mentioned before, will disappear. Do you think the hormones are still affecting me despite it not being in my uterus? Maybe that 's why I didn't fall pregnant.

Anyway, sorry for such a long post, I would be really interested if anyone has any experience of the same sort of thing. Thanks.

Poppyella

[Mercedes519]

OMG Poppy that sounds terrible! I really feel for you.

Had a Mirena for three years and didn't have any problems with it. Was considering having one put back in following DD birth and was advised to wait until 12 weeks to make sure the cervix was more closed but nothing about lining thickness. Was this specifically because you had twins or was it a standard piece of advice they had?

[booooooooooyhoo]

sorry you had sucha horrible experience. can i just ask though. didn't you do any reading on the side effecst of teh mirena before you decided to have it? and at what stage post birth it should be used from?

[Aitch]

you poor thing, how awful for you, i hope your operation goes well.

[whomovedmychocolate]

Blimey, that sounds awful.

I know they say you shouldn't have it done soon after birth especially if you are breastfeeding.

Good luck with the laporoscopy. The hormones may take up to two months to abate after removal IIRC. The cells with hormones in still expel the stuff even if they are not in the uterus.

[RaisedFromPerdition]

An ex-colleague had one years ago. Got pg, assumed it must have fallen out. Had a baby. Had some pain a few years later. Was v frightened. Same thing, coil was in her abdomen but had got lodged into something (I forget the details) and started causing pain.

It is a very small risk but obviously terrible thing to happen to you.

Good luck with your op. Ex-colleague is all fine now. She was more shocked than anything else.

[Poppyella]

Hi again

Booooyhoo - yes I did read up on the side affects but I guess, as with alot of things like this, it was that age old saying 'oh they won't happen to me'. And I suppose I thought that they wouldn't really be that bad. I do think it is a fantastic form of contraception, you don't have to think about it and for me anyway, my periods are regular and light and pain free. I just wish I didn't feel so irritable all the time !!! Also, lots of my friends have it and it suits them really well so I presumed it would me too. It's only now that I have started to read up about it that I think I might (and I'm not saying definately) be feeling this way because of it.

I am really worrying that even after it comes out I still feel the same. But I have got to try without, for my sake and that of my family tbh!!

The dr said to wait 6 months but I have read in lots of places you only need to wait 3, so I guess I was just unlucky!.

Anyway, I'll let you know how the op goes.

ttfn

Poppyella

[booooooooooyhoo]

ah right, yes i have been tehre two with other things. it just came across in your post that you were very angry that you had these side effects, as though no-one had made you aware they were pssoible. sorry if i am picking that up wrong. i hope you get sorted and the side effects disappear with it.

[belgo]

How awful.

Did you have a caesarian section for the birth of the twins?

[Poppyella]

Hi Belgo

No, I had vaginal births with the twins. It wasn't without complications, acute twin to twin transfusion right at the end of labour, but that's a different story....

Luckily they were both head down when i was induced and i had had really quick and easy labours for the other two.

Booooyhoo - I guess when I was writing that post I was in an irritable frame of mind!! Sorry for seeming angry, today I'm quite calm!! Hopefully I am not genuinely some psycho nutter bunny boiler and it is the coil to blame lol!

poppyella

x

[Maz17]

Hi Poppyella

I hope you see this posting. I have just registered so I could respond to it. I have had the exact same thing happen. Your posting is my story almost word for word. I hope your op went ok did they manage to get it out?? It would be good to hear from you.

[judawn67]

Hi,

I have had exacly the same problem but they also fitted me with another coil.There was no xray given until after the 2nd coil was fitted because i kept going back with pain.They cant find the coil on a scanand have no idea where it is .It can only be shown on xray.I am now on a waiting list to have it removed but i am so worried .Can you let us know what happened .Thank you x

[EmmaRoyle]

Hi, ive recently had the copper coil put in, and im having pains in the lower part of my stomach. when i had i put in i was told that i would be shown how to check that it was still in place, i wasnt and didnt realise till i got home, but i know the basics that you have to feel for the strngs. ive checked several times and cant feel the strings, so im now starting to think its not been put in properly. has anybody else had anything similar and got any advice?
Thanks, Emma

[alfits]

Hello ladies : ) i am also new to this thread.My name is mandi and after checking and searching lots of searches regarding the Mirena i thought i would ask my questions on here if anyone can help me that would be appreciated.
Firstly i must say that i had my coil fitted in 2003 after having my last child.Did not have many problems with it really and even my periods deserted me!! which is great really so was very happy.I had breast cancer in 2006 and was told that my body went through a natural hysterectomy and that i didnt need contraception but me being me kept the coil in to be safe.I regulary checked my coil and in june 2007 realised i could no longer feel the strings.I was worried and went to my doctor who also confirmed she couldnt feel the strings either and made appoinment with a gynecologist around 2 weeks later.
I turned up and had a vaginal scan and it was told that my coil had expelled itself and was sent on my way.I never thought nothing else and just went home.Well this september i had to go have a x ray on my hips for a problem that i have and when he showed me the xray my coil was there!! OMG i couldnt believe it,its way over due to come out like by 3 years? i dont know what to think now and how are they gonna get it out of me?The specialist laughed and asked me if i had been doing bunjjy jumping!! lol.Well it is right up high under my ribs on the right hand side.I have an appointment on the 13th october so will know more then.I do hope that someone can advice me on this and i wish all the very best for all of you dealing with this kind of ordeal.take care all : )

[alfits]

This is for you Emma : ) sounds to me you should go get checked out.It can only be one of 2 things! The strings were cut too short or you have lost the mirena!! i would go asap as you dont want to wait like me and have to have an operation : ( good luck and let me know ok.take care x

[iomegawoman]

Hi, I'm new to posting on MN but i thought i would tell you my story. I had the mirena in from 1999 to 2002 after the birth of DD1 with no problems and no periods, it was brilliant. I had it taken out to conceive DD2 who was born in 2003. My gynaecologist put it back in 12 weeks after she was born and that was when the pain started. I had three years of pain and constant bleeding and the GP and Gynaecologist saying that it "should settle down, come back in 3 months" every time I complained. Eventually ended up in A&E where the doctor on duty said that it had slipped into my abdomen but he couldn't take it out as he was not trained to. He gave me an appointment for the gynae clinic the next day - where they denied that there was anything wrong at all but did take it out for me! I hope it works out well for all of you and if you are having problems that you get a sympathetic doctor.

[alfits]

hiya Iomegawomen,after reading your threat i think that its discusting that a professional can say its not a problem to have a coil inside your abdomen.Its a foreign body which can rip your insides and leave scarring!what is the world coming too.Seems to me they like sticking these things in but wont take them out.I hope your better now and if your like me wont be having that mirena again.good luck and take care

[falasportugues]

I have just discussed coils with my doctor, who says there is a 1 in 1000 chance of perforation happening, and that they always know about it straight away when it happens, due to the pain.

I am now distrusting my gp a bit over the information she gives. I think they sometimes think the information they have is 100percent correct, but it does not seem like good quality information to me.

I will not be going to my gp to have it fitted, but use the hospital clinic with a family planning nurse. I am hoping it will be safer with somebody whose role is specifically family planning rather than a gp who does a clinic once a month.

I thank all you ladies who have shared your experience with us on this formum. it is really helpful to others, and I hope that you have all found it useful as well. good luck with your procedures.

[iomegawoman]

Thanks alfits, I'm fine now and I won't be getting it in again! Hope you are keeping well.

[akay12]

I had a copper IUD coil fit 8 weeks after giving birth when I was solidly breastfeeding so therefore my womb was still very soft and contracting a lot as I fed my daughter, but I was assured by a DOCTOR that this would be fine and would not cause any problem (if i'd of only known was was to happen).

So I had the coil fit and I was instantly in severe pain and suffered sharp pains and cramps but ut it down to the coil settling in. I could not feel the strings at any point and it took 3 months of me begging for them to do something for things to actually start happening. So I went for a scan...nothing, went for an x-ray and they could see it diagonally pointing towards my spine but couldn't give me any indication as to exactly where it was so I had a very swift MRI scan as my coil was copper and therefore luckily my husband picked up on the point that due to the MRI scanner being an electro magnetic field this could cause a current and the coil could set on fire (thank goodness he was there to point this out to them as they were clueless to this fact) therefore agreed to quickly send me into the machine and straight back out. Due to the speed they didn't determine anything from this scan so I had keyhole surgery and they found nothing. I begged for another they eventually agreed to perform another key hole surgery and then had to cut across my abdominal (like a section but into my abdominal not womb) Eventually they found it wrapped in some fatty tissue under my bowel, the fatty tissue saved my life as this protected it from perforating my organs. It was beginning to go septic and it could of so very easily been a very very different outcome. Thankfully I am here to tell this story and to warn other ladies as I know they are still fitting coils to new mums who are solidly breast feeding!!! please do not!

When they had removed the coil I was so ill I was down to about 6 stone in weight and was losing my hair I was so weak and obviously lost all my milk and due to being in hospital for so breastfeeding my daughter was snatched away from me. I internally bled after the operation and they failed to notice this, I had lost half my blood count they didnt know where just 'topped me up' gave me 4 units of blood tranfusion. I was so so weak I didnt argue although I did think I must have clotted somewhere interanlly as they said I idnt lose much in theatre, they sent me home and sure enough I did have a huge clot a haematoma and my wound literally exploded and blood hit the ceiling I collapsed and was rushed in for surgery again!!! This time they did ensure I wasn't internally bleeding and got rid of all my infections.

I was assured that in the future having any pregnancies should not be any problem. Several years later when we decided to have another baby everything was fine I conceived almost instantly and everything was going smoothly up until I was around 7 months pregnant and then I was advised by a senior consultant to maybe consider having a C-section as the coil did perforate my womb and therefore will have left scar tissue and this leaves a risk of my womb rupturing during labour. I bled alot at about 8 months they could not determine why so I saw this as my body's way of warning me that a natural birth was out of the question. I had a planned c-section and during they found a large loop of bowel attached to my womb (adhesion) another senior consultant was called into my operation and they decided to not detach the adhesion as it may perforate my bowel. Thankfully my daughter was delivered and is perfect but they did struggle maneuvering her head around the adhesion.

I have been fine since and hopefully no bowel obstruction etc will occur in the future. We really really want to have another baby now but I am very very worried about the outcome if we did and really should thank my lucky stars that I have two beautiful healthy girls and I am here to tell the tale. My consutant in a recent meeting has said it could end up in a colostomy bag... it may not, it may end with a vertical incision down my tummy...it may not, it may end in a hemorrhage...it may not. In my eyes its a huge risk.

If this post has prevented one person from going through what I went through I will be very pleased.

[tabby1001]

Hi Poppyella
Just read your post, I would be very interested to hear how you got on, I have a copper coil, that they said was also pushed up into the abdomen and that to leave it as fatty tissue will grow over it and it will be fine, this was 12 years ago. I am now thinking I do not want this foreign body in me, but not sure what the procedure would be to remove, the doctors just laugh at me for thinking it may be causing any problems.

[SLCaldwell]

I had a mirena for 5 years with no issues at all. It was fitted under anaesthetic whilst I had a ovarian cyst removed (along with half my repro system) caused by endometriosis. I had a new coil fitted 9 months ago and think it may have moved inside. I have started to get a stabbing pain towards my left hip / back every so often but what else I have noticed is I need to
to the loo as soon as I need to go, otherwise it really hurts and I can’t hold on - it’s like I am going to burst. I haven’t ever been able to feel my threads but I am a bit squeamish down there after all my history...
Has anyone else with a moved coil experienced what I have?
I am going to see the nurse ASAP to check my threads.

[Soph297]

Omg totally panicking about my coil! Mine has also perforated my womb! Had it put in 19m ago and was in agony! The woman said I mustn’t have a high pain threshold but I know I have, I never cry through pain and I was actually crying and barely able to walk! The ladies who have scanned me say they’ve never seen anything like it :( it’s also horizontal and now my womb is deformed.

[Lrickman123]

Hi, I'm new to mumsnet and joined to post on this thread! I had the mirena coil put in 6 weeks after my little boy, when I had it fitted I was in excruciating pain and had very heavy bleeding and severe pain for the following 6 months. I went back to a different doctor and asked them if they could remove the coil for me as i was unable to look after my little boy properly due to the pain, when the doctor tried to take out the coil he couldn't find the strings and referred me for an ultrasound. Nothing to be seen on the ultrasound. I was then referred for an x-ray which showed the coil had moved into my abdomen and that's what was causing me the pain! Two weeks later I was on for keyhole surgery to have it removed all of which went well and they managed to remove it without any problems (two weeks healing afterwards). I'm now 1 1/2 years down the line and trying to have baby no. 2 but I'm only having periods every 3 months and as of yet we have not managed to conceive. Before the coil I was very regular with my periods, I don't know if the irregularity has been caused by the coil or not but I will be going to the doctors soon to find out. If you feel like something isn't right then push on with the doctors because I was going back to them weekly after having my coil put in to be told it was all normal and even at my 6 week check I was told everything was ok (I found out later on that the doctor had lied and that the coil had already left my uterine wall by that point). You know your body better than anyone else!

[Suem1968]

Hi I'm new to the thread, I've only come across this thread. My story : Quite some months ago I started to get upper right quadrant Pain under my ribs, I have been hospitalized several times, cutting a long story short.....my gp sent me to a gastroenterologist, I recently had a CT scan (last week). Yesterday I was having horrendous pain under my ribs, and down in the appendix area I had an emergency appointment with the gp yesterday, who sent me to hospital straight away thinking that I had appendicitis, following blood tests and the emergency reporting on my CT scan, it turns out that I my mirena coil that was fitted 2 - 3 years ago, has perforated my uterus, I couldn't have children and had my original coil fitted quite a number of years ago, I have had several others fitted over the years, due to other medical problems. I incidentally had an ultrasound scan internally and externally, back in May, I got a phone call saying nothing to worry about, but we've seen an abnormality thickness in the womb, we need to watch and wait, 6 - 8 weeks when I will be asked to have another ultrasound scan......fast forward to yesterday, I'm probably going to have that ultrasound scan tomorrow afternoon, they wanted to keep me in hospital to keep an eye on my pain, but I wasn't guaranteed that I could actually have my scan tomorrow, so I decided due to having an interview in the morning I didn't stay in...so I'm basically facing a major operation with a scope to see what is going on they were very worried about the pain I was in, .....I'll keep you posted

[lolaflores]

Hi everyone,
My daughter 26 had a scan that showed her coil perforating her uterus. We so far have had no word about any treatment for it.
She is with Royal London and we cant' even get through to the gynae appointments or the medical secretaries.
She is in pain and so worried about the damage it might be doing or sepsis.
Can anyone tell me the average wait time for an urgent referal? There is one made but no appointment shcheduled for the procedure.
Any feedback would be greatly appreciated.
Her story pretty much mirrors everything Ive read here.
my heart goes out to each and everyone of you.