Backed into a corner

I was pressured into having the minera coil fitted a couple of weeks ago, I've been told to try it for 6 months but I've no idea what happens after then? My endo specialist said I will be removed from his register as my endo was minimal and treated in surgery and to have a baby or the coil. I physically couldn't cope with a baby right now so my only other option was the coil, if it doesn't work will I have to start everything again I'm terrified that the past 3 years I've spent doing everything the doctors said, waiting for appointments, having surgery etc mean nothing and in 6 months time I'll be back to square 1. Also can I really be removed from the register, I thought that endo grows back and what if it wasn't all removed I've already been told by my endo nurse its probably deeper routed than what could be burnt off? What should I be expecting from the coil, all the pills sent me crazy which is why I came off them but none helped with the bleeding and pain. Sorry for all the questions and stuff, I'm 22 and really don't know what to do or how to cope with the doctors and all I understand how difficult it must be for them but why don't any of them seem to give a crap???

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  • We all get removed fro the register once a surgery is completed - until next time we need a surgery then we go back to the GP and ask to be referred back to the gynaecologist and onto the register we go again.

    Surgeons are ONLY there is you need a surgery.

    If you have had one to remove all existing endo - which it sounds like that is what they have done then you no longer have need of surgery for the time being, and it is a case of managing your periods as best you can by trying to stop them long term and thus reduce considerably the chances of new endo transferring from the womb to new locations any time soon. All the inbetween surgery treatments for endo are done in consultation with you GP or the local family planning unit - both of whom can prescribe the period stopper methods of contraception to you.

    Mirena can take up to 6 months to stop your periods, mine stopped at 5months.

    Some ladies have managed to stop there's even sooner than that.

    It works by thinning the lining of the womb over a few periods so each regrowth of menstrual lining gets less and less till it eventually stops you having periods while at the same time it causes the cervix to produce more cervical mucus goop which holds the mirena in place and plugs up the cervix protecting it from harm allowing any irritation from heavy bleeds to recover and heal (cervical erosion problems) this pplug also prevents sperm entering the uterus which adds an extra barrier of protection from pregnancy.

    Once your periods are stopped then that's usually it for the lifetime of the coil which is up to 5 years.

    You get your life back free of periods, period pains, endo pains too can cease, ovulation can sometimes stop in some women as an extra bonus.

    And you live a normal life until the coil needs replacing or you decide that you want to start a family and have it removed so you can try and conceive.

    My coil has been in over 3 years and utterly transformed my life now that there are no periods to worry about. I did get a blip in year 1 with two consecutive periods and worried it had failed early - but they were just a blip and since then nothing at all -no spotting even. Not a peep of activity from the uterus. It has been marvellous.

    It's only 20% of the hormone dose that birth control pills give you and because the dose is so low- the risk of side effects is also much reduced.

    I don't have any - other than I don't have periods now. Can't fee the coil, no cramps, no bleeds, no bloating, no monthly cycle of upset bowels either.

    There are loads of endo ladies on the coil and making the most of their new found freedom. It is only a very tiny number that for some reason cannot get through the settling in stage and wait for the little miracle to happen and your periods coming to a halt.

    And it is completely reversable if you do decide to try for a pregnancy - it can be removed and you should have a normal period cycle kicking off right away to get you ovulating and growing a normal menstrual lining ready for a pregnancy.

    Give it a chance because it honesty can be life transforming if you can cope with the wait for it to get to work properly.

    It might be all you need now to get your life back on track. IF on the other hand it does work but you are still plagued with endo problems - then you can still ask to see the gynae for more surgery and leave the mirena in place while having that op. It doesn't need to be removed for endo surgery.

    Stick with it - you're bound to be amazed at what a simple little gadget like mirena can do for you once it has done its job and stopped the bleeding. I am thrilled with mine and have every intention of getting it replaced with another when the time comes.

    I'd had endo 29 years before being diagnosed, stage 4 with laparotomy surgery on large cysts and lots of endo. Far too much endo to be removed in one surgery and it is deep infiltrating endo in bladder and bowel. Mirena has given me back my life again, even though I know there is still plenty of endo inside me. Just the fact that my periods and pains have stopped after such a damned long time is absolute bliss.

    the worst part is getting the mirena installed - everything after that is a doddle, and even if you do get twinges and tweeks of pain while it settles in -they are not as bad as period pains or endo pains can be. Once the layers of cervical mucus goop have built up you shouldn't feel anything in the twinges department. You can literally forget it is there. Certainly in my book the mirena is the best of the options available due to the low dose and the length of time it should last you. It's way better than anything else i have tried over the decades.

  • My doctor has mentioned that my gyno may recommend a mirena for me and I was a bit apprehensive about this. I've read its harder for women who have not had children to have it fitted etc and can take longer to settle. My husband and I can't have children so that is not an option even though we want a child. I've had dismissive doctors (female docs surprisingly) but I've now found a doctor who is very thorough and very supportive. Do you have an option to have a different GP at the practice you go to? Try to hang in there. x

  • yes you can ask for the installing of mirena to be done with anaesthetic or pain relief and be done at the gynae outpatients at hospital if you prefer. You are entitled to that help if you think it willbe too painful to be done without help.

    I've never been pregnant either - AND I have a bicornuate uterus and the mirena has been put in one half of the uterus (under a general anaesthetic) - and it is retroverted too.

    If I can have one fitted so can just about anyone - with the right help and expertise.

  • Thanks for the info :)

  • I would say stick with the coil, but if it isn't right for you look to alternatives. Your story sounds very familiar to my 2014 - had surgery at start of Jan and was given the ultimatum of 'you should have children now or the coil if you want to have a chance of ever having them' - a lot to get your head round when you're not ready or in a position to have kids and you've just had surgery.

    I would give the coil a chance but monitor side effects, period changes etc and review if it is working. I've had 10 months of misery on the coil - constant bleeding, teenage skin, hair loss, tears - I was holding out hope that I'd be one of those women who's periods stop but I just ended up being anaemic.

    I don't want to put you off, just be realistic and speak regularly to your Dr to establish if it is right for you. I had the words from January ringing in my ear, but when I spoke to my Dr last month because I'd reached breaking point with the coil I feel more reassured there are alternatives.

    I really hope you have a good experience with the mirena - good luck, may the hormone levels be in your favour!!

  • Thanks for all your replies. Impatient, it wasn't the surgeon who I spoke with it was an endo specialist the surgeon I met on the day of my surgury and haven't spoken with since but I'm getting the impression that's pretty normal. After the op I was still in agony daily and saw the endo nurse who sent me to the specialist who struch me off. I then went to my gp who was confused why if I still had pain why was nothing more being done, after getting an angry response letter from the specialist gave up and told me to try the coil. So far I'm still in agony, I'm hoping it will calm down and work but after not really getting a proper diagnosis for my pain and having all my endo supposedly removed when the coil comes out be it 6 months or 5 years either way they still have no clue what's the problem, what would be the next route after endo has been eliminated on not causing the pain? Again sorry for the questions but everyone one here seems to know and be willing to share a hell of a lot more info on all of this than any professional I've asked xx

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