Mirena coil: Hi ladies, Please can anyone... - Endometriosis UK

Endometriosis UK

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Mirena coil

Carriejoy profile image
9 Replies

Hi ladies,

Please can anyone relate to using the mirena coil for their endo control? I've had 2 laps in the past, and they finally decided to fit me with the coil during the 2nd. I was bleeding constantly with all other contraceptives. The mirena was perfect for nearly 4 years with no pain or bleeding. However, for about 5 months now I've have monthly pink discharge (sometimes suitable for a tampon) and the occasional black yukkiness that sometimes comes with heavy periods. My pain has also started to return. I'm not sure if it's the hormone levels running out? I've emailed mirena direct but have had no response and trying to get an appointment with my go is proving almost impossible at the moment! 

has anyone else had an issue like this? 

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Carriejoy profile image
Carriejoy
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9 Replies

I wonder if it may be coming to the end of its effective life. At my most recent appointment with my consultant and specialist nurse I was told that my coil would be replaced every 3 years (rather than 5) for this reason. It sounds like it might be worth scheduling a replacement but definitely contact your doctor to ask. X

Carriejoy profile image
Carriejoy in reply to

Thanks Janine, I was assured it would last for 5 years but did wonder if the hormone was running out. I'll keep pushing to see the gp, I do not want a 3rd lap 😖 

X

carolineeballard profile image
carolineeballard in reply to Carriejoy

Pretty sure it becomes less effective also.

Keep on trying to get your GP. May just be a case of fitting a new one.

And it is good to hear how the mirena has worked for you (and for such a long period of time!) Xx

LtAngua52 profile image
LtAngua52

Hi it only worked for me for about 18 months. They had trouble getting it out but they gave up trying to get a new one in. As they had 4 different people coming in to try I was glad! I was climbing the walls. I was then put on noresthisterone. Does sound like it's just time for a replacement though for you. Hope the next coil works for you again. :-)

Carriejoy profile image
Carriejoy in reply to LtAngua52

Ooh poor you 😖 I'm dreading the thought of having mine replaced whilst awake! What is noresthisterone? X

LtAngua52 profile image
LtAngua52 in reply to Carriejoy

They said the reason why they couldn't get the coil in was that I had a twisted cervix, which sounds like a 1970's rock band! There didn't seem to be a problem with fitting the first one though, mmm.

Noresthisterone was prescribed because of the extremely heavy bleeding, flooding, that I was getting as well as the extreme pain. I had an ovarian cyst removed along with one ovary. It stops periods totally. I was on it for just over 4 years and wasn't monitored except for the first 12 months. I have since discovered you are supposed to have regular monitoring.  I had to stop it last year before I had a tumour removed from my liver, because of the clotting issue with operations. Apparently, this benign (thankfully) tumour was caused by taking hormones. Noresthisterone as previous years of the pill the likely culprits! :)

Georgimama profile image
Georgimama

Hi , I too had a mirena fitted after a second lap, that was almost five years ago. I believe the pain started to build up again from about a year/ eighteen months  ago.... The GP told me it would be good for five years. Mmmm not sure about that, the symptoms of the endo have really taken root now and when I finally got a referal to the gynae clinic, the registrar now cannot find the Mirena. I am having a MRI scan next week to see if it is still there and if so where. I still have no periods which makes me think it is there. Are you sure the coil is still where it should be? 

Carriejoy profile image
Carriejoy in reply to Georgimama

I didn't think about it moving .... I've tried to palate my stomach and can't feel anything untoward. It just feels like classic endo pain returning. I am going to get an appointment and I'll remember to ask about the possibility of displacement. 

Good luck with your scan 👍🏼

Angelclaire profile image
Angelclaire

My specialist also said mine would need replacing after 3 years and not the usual 5. Explaining the hormone levels would have diminished too much for endo treatment. 

Mine is due replacement this summer and As it was placed during surgery I am not looking forward to bring awake this time. 

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