Dealing with Endometriosis

Hi I'm 21 and I was diagnosed with endo in 2013 after a long battle with my doctor about the severe crippling period pain I had, they sent me to have scans done and diagnosed me with endo.

I've had an operation to remove some of the endo and was advised to have the mirena coil fitted.

I have had the coil fitted for 10 months now and have been having really bad periods again, I've also got the pain back and its nearly as bad as what it was before i had the coil fitted, some days im in that much pain all I want to do it lay in bed and cry, thats how bad it is, ive been taking Naproxen for the pain and that helps but when the pain is really bad it seems that doesn't work either. The doctor has told me that the coil is not working for me anymore and that I need to go back and see my consultant at the hospital.

Has anyone else had this problem with the mirena coil?

Any information would be great.

9 Replies

  • I have a slightly different story to yours in that I haven't been diagnosed with endo (yet). I used to have 2 week periods with intense pain on one or two days during it and was advised to get the coil which I did 19 months ago.

    My periods have got lighter, and I had the expected settling in pains and bleeding but about 9 months in I started getting more and more low level pain and random spotting through the month. I was given the pill for 3 months to see if that helped (it didn't), then after a year I had an ultrasound to check it was in the right place (it was). Then I got my referral back to gynae.

    In October the junior gynae dr thought that I wasn't getting on with the coil and wanted to take it out but gave me Norethisterone instead to see if that helped. In January I went back for a follow up and although the bleeding was better the pain is now almost daily. This time a different junior gynae dr said I should have a laparoscopy but wanted to keep the coil in as she thought it probably was helping.

    So after that long story I've worked out that either the coil is causing my problems, or it's not prevented them from getting worse. I have my lap in a couple weeks which should be interesting. Did your GP suggest taking the coil out or are they leaving it up to the consultant?

  • All of what you just said about the pain is very similar to me.

    My doctor has said about having the coil out but is leaving it up to my consultant, she said that they may also want to do a laparoscopy, and that I may have to have the coil removed via surgery as she thinks the endo may have grown over the coil. I've also been getting most of the side effects of the coil and one of the main ones thats affecting me is the nausea.

    but the doctor also said that it may be producing too much of the hormone and that may be the reason why im getting the bad nausea.

    I am currently awaiting an for an appointment from the hospital to go and see my consultant, which im hoping isnt going to be too much of a long wait because i just want this sorted, this has been a 2 year battle to try and get diagnosed and get the pain under control.

    before i had the op and after it i was on tramadol 2 4times a day just to ease the pain, they then put me on a course of treatment that worked really well, but i was only alowed too be on it for a maximum of 9 month.

  • Hi Samantha,

    I had the coil fitted about a year ago now and like you I still got the pain my gynea decided that I should go on the depo provera injection alongside the coil to see if that helps. I had my second injection last week and think it is making a bit of difference with the bleeding but not so much the pain. It has settled a bit but not as quickly as I would like but hopefully with time this will settle down more.

    Hope you find something that works for you

  • Hi thank you for your reply, my only problem is I got the coil because I can't have the injection, implant, the mini pill or the combined pill as they all react badly with my body, I've had it where I've been on constantly for 6 months, or I've had severe side effects to them. The cool was the one thing that I hadn't tried that the doctors said would be the best thing I've ever tried.

  • Im sorry to hear that. I know how you must be feeling it always feels like you take one step forward and 6 steps back. Would they consider doing another lap on you to see if its returned/spread. I was told basically to get pregnant I was fuming they wont do another lap on me because of my bladder doesnt work since my lap.

  • Oh and the thing what worked was it Zoladex by any chance

  • I don't know about them doing another lap, I am just going to have to see what they say.

    Yeah zoladex is what they put me on, it was great, I had no pain and no periods! I was in heaven aha xxx

  • I thought zoladex was amazing too seemed to be the only thing which really worked wish you could go on it long term would make life easier. x

  • yeah wish i could go on it long term, it was the best thing that worked and so far the only thing that worked.. xx

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