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Original poster

Copper coil perforated my uterus and bladder

20 replies

ginandtonic324 · 02/12/2020 16:58

Hi, I just wanted to share my experience more broadly since so far I have only been able to talk about this with close friends and colleagues.

I had a copper coil inserted in 2010, after a termination. My GP at the time told me they lasted 10 years and I never had any problems with it so I left it there unattended until this year, when I was planning to have it taken out. In nearly ten years, I ever got any advice to have a scan or anything. I think deep down the reason I never looked into having it removed before was that I was scared of the pain of having it taken out.

At the beginning of this year, I experienced pelvic pain and blood in my urine. I also had a bit of blood between periods here and there. I was referred to a urologist by my GP and it was discovered that the coil had perforated my uterus, and embedded into my bladder, which caused a bladder stone.

To cut a long story short, I was offered a laparotomy (major, invasive surgery) in the private sector as the doctor said that was the only way to remove the coil and the stone. I wasn't happy at all with this option as it would result in more scarring (apart from the caesarean sections) and a long recovery time.

I went to the NHS for a second view, but I didn't think they would be able to treat me because of the pandemic. I was lucky enough to talk to a very understanding doctor, and he offered to remove the stone with laser and the coil via hysteroscopy.

I had the procedure in September, recovered well and was lucky enough heal and not to need any further operations. But the whole experience left me a bit traumatised in the sense that I wasn't given any information before or after my coil insertion. I am aware that I should have looked for information and advice myself but because it never caused me any issues before, I thought everything was OK and never imagined the possible IUD related problems.

I was looking online and there are millions of cases of uterus perforation from IUD's around the world. In America, many women have sued the pharmaceutical companies for this problem, as it can lead to infertility in some cases. I would not go as far as to look to sue anybody, but I would like to share my experience and to warn other women about opting to use an IUD as contraception.

I know that a lot of women don't have any problems with IUD's but it seems to me that quite a lot have had serious issues with the coil and it is worth brining this into attention.

Please get all the information you can before making a decision.

OP posts:
Dowermouse · 02/12/2020 17:05

I've seen what copper bracelets do to the skin on my wrists, no way I'd invite that inside my body. Sorry you've had that experience OP, my sister has a whacking great scar from having an embedded coil removed.

BloodiedButUnbowed · 02/12/2020 17:08

I’m sorry to hear that. I had a perforated uterus with my Mirena coil, but luckily it didn’t affect my bladder. I had to have surgery to have it removed and luckily they were able to do keyhole surgery. I was NOT happy though!

BucksFizzForBreakfast · 02/12/2020 17:10

Gosh you are far from the first horror story I've heard about these coils - a few of my friends have suffered as well. I'm so sorry you had to go through all that - it sounds like an absolute nightmare. I will definitely never ever be getting one of these!

Original poster
ginandtonic324 · 02/12/2020 17:16

Thanks for sharing your experiences.

Dowermouse, you were very wise to stay away from the copper coil, Sorry to hear about your sister.

BloodiedButUnbowed, sorry to hear about your experience too. At least you were not open up completely like my first doctor recommended!

Luckily they removed both my stone and coil endoscopically so I had no scars.

I was so scared and angry too to have to have more invasive surgery because of a coil. I am aware I had a lucky scape.

It is such a shame that women have to go through this and the problem seems more common than advertised by the manufacturers.

OP posts:
Original poster
ginandtonic324 · 02/12/2020 17:20

BucksFizzForBreakfast, it was indeed a horror story. I spent most of this year researching and worrying. It caused me great anxiety due to the pandemic and having to wait for ages for the operation.

So good you never went for it!!

OP posts:
user541633589911 · 02/12/2020 17:22

I don't know much about this and have just been reading the NHS page about IUDs.

Did they teach you how to check yours was still in place? The info I'm reading says they will but I can imagine that may not always happen or may not be explained well. (Aware that what guidance docs say will happen and what will actually happen is not always the same!)

I read recently about the problems women have had with coils being used for sterilisation (the ones they inserted in the fallopian tubes). Must admit to being horrified that nobody foresaw that sticking coiled metal in a person's body would cause the problems it has, but still didn't make any connection to IUDs.

Thanks for flagging it.

I'm sorry you've had such a gruelling experience.

Winecheesesleep · 02/12/2020 17:23

I hated my copper coil but didn't have such a serious problem. Mine just gave me really heavy painful periods and I often felt it twinge randomly. I got it swapped for the mirena which for me is so much better.

Sorry to hear you had a tough time and hope you're feeling OK now.

Original poster
ginandtonic324 · 02/12/2020 17:39

Thanks for your comments and kind words!

I also had very heavy periods for a while with the copper coil but these stopped after a few months. I had very heavy, smelly discharge in the last years or so. In hindsight, I should have had it removed ages ago, and talked to my GP about these other issues.

I thought the discharge was related to something else, like yeast, or something like that. Again, lack of information and being too lazy to do more research early on.

OP posts:
yarncakes · 02/12/2020 18:56

I also had a perforation when I had the copper coil. Caused awful cystitis like symptoms every day. I'd curl up in bed after work and put a hot water bottle on my tummy. Having it taken out was the worse pain (nurse took it out via my vagina thank goodness didn't have to resort to surgery). The cramping and bleeding lasted days. I since suffered from ectopic pregnancies so I wonder whether they're linked, even though I got pregnant after having it removed.

Comps83 · 02/12/2020 22:29

My Aunty made me promise never to get the coil
She had one when she was 30 and it didn't agree with her
They went to take it out but couldn't find it but in the process they punctured her bowel
She ended up having a hysterectomy
Then she nearly died of sepsis
She's nearly 70 and they never actually found it !

LittleCabbage · 02/12/2020 22:32

So sorry to hear of your experience. Thank you for raising awareness here.

Original poster
ginandtonic324 · 04/12/2020 17:55

Thanks everyone for your comments and sharing your experiences.

I honestly wish that the risk of organ perforation was something that every woman getting a coil would be informed about. It wasn't certainly listed in the leaflets I was given. They did mention the heavy periods.

I would also advise against the use of a coil to every woman of reproductive age I know, but I understand that having all the information about the risks prior to insertion is key before making such an important decision.

I feel that because it is a woman's issue, it tends to be minimised, like other issues related to women's health, such as the use of vaginal mesh and the effect of epilepsy medication during pregnancy. It is usually after they have done a lot of damage over the years to millions of women that something is done about it.

OP posts:
Allamericanreject · 04/12/2020 18:03

I was "forced" by my gynaecologist to get a mirena coil. I kept refusing due to horror stories I have heard (mums perforted her uterus too!) But they said that due to possible thickening of the uterus I would very likely get cancer and the only treatment was a coil and if I didn't get it that there was no other treatment options..so basically coil or cancer.

This was in September I needed surgery to get it in and have had nothing but issues since. Continuous bleeding and constant really bad pains and cramps but they continue to do me off until it has been in for 6 months!

ducktape · 04/12/2020 18:33

I have had mine three years with no issues. I have to have annual smears due to previous abnormal cells and when I do, the nurse lets me know all looks OK with my coil. Can I ask if you had any smear tests during the stage that things were going badly wrong with yours? (I know that most people have them much more infrequently, I think 3 years is the normal gap where I live)

Original poster
ginandtonic324 · 04/12/2020 18:41

I did have a smear test right before the first ultrasound scan and it was all OK. I was by then having lots of discomfort and blood in my urine but my smear test was all fine.

I also had all my smear tests every three years before that, but they never showed anything wrong with my coil.

OP posts:
ducktape · 04/12/2020 18:41

Also, Flowers I hope you have made a full recovery. I agree that many people don't realise that this type of contraception comes with risks and the consequences can be very serious. My husband didn't want me to get it because a similar thing happened to someone he knew. So I take a lot of reassurance from those checks and am now worried that they could still miss something

Original poster
ginandtonic324 · 04/12/2020 18:45

Thank you, ducktape. As long as you have it checked regularly, you are in the right path. If you have a scan or checks every year, then if something goes wrong you will know in time to do something about it.

The worst thing is to leave it there for years without checks.

OP posts:
Original poster
ginandtonic324 · 04/12/2020 19:01

Allamericanreject, sorry to hear you were "forced" to have a coil and that it is giving you trouble. If it doesn't get better, I would personally look into having it out. Can you talk to another doctor for a second view?

I know we are not experts and we should follow their advice, but my experience is that even among experts, there are many approaches as to how to tackle the same situation.

In my case, one doctor was adamant I needed major, open surgery and the other one offered me the option of removing the stone with laser via cystoscopy, and removing the coil vaginally.

opinionatedfreak, thanks for the links. This is really good to know. In my case, neither my GP or any health provider gave me this information before insertion. I didn't look online at the time as I didn't have any problems but I know I should have done.

OP posts:
CaraDuneRedux · 04/12/2020 21:23

Way back in the late 80s my housemate ended up collapsing at work, haemorrhaging badly, and had to be rushed to hospital. She later described the coil as a slow, painful method of sterilisation. I never felt keen on the idea after that - mostly stuck to condoms.

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