Adenomyosis. Mirena or Hysterectory??? Help!!!

Hi. I've had endo for as long as I can remember and with one lap have more or less been in control of it. I'm now 44 and for the last six months have been in almost constant pain, which has now been diagnosed as Adenomyosis. I went to see my consultant again today and he's left me with the choice of either the Mirena coil, which he said might cause me problems due to my cesarean scar and has a 30-40% chance of helping me, or a laparoscopic sub-total hysterectory, where they would also remove one ovary, which is obviously major surgery but has a 90% chance of curing me. I've got two teenage children and don't plan on having any more.

I am so confused and really don't know which option to go for so wondered if anyone on here could give me any advice??? Part of me thinks I should perhaps try the coil first but then I've been told it can take at least six months to settle in to see if its effective and then if not, I'd have an even longer wait for the hysterectory, and still be in pain. Then again I'm not sure its the right thing to go straight for the surgery option, which obviously has risks involved and a fairly long recovery.

Thank you so much for any help xx

7 Replies

  • Tricky! I had the mirena fitted with my lap last november when diagnosed with stage 2 endo. I had constant bleeding felt really low and had it removed after 2 months. It really works for some people but for me it was a big no no. Research it! Good luck x

  • Tricky indeed - I am usually completely anti-hysterectomy, but if they are sure that the pain you are suffering now is caused by adenomyosis and you are absolutely sure that you have no more practical use for your womb, then it makes sense to whip it out. I love my Mirena to bits, just had a second one put in, but I have to say that despite being absolutely brilliant for the bleeding, it has done little if anything for my pain.

    Also, I know nothing about how a Mirena would react to a C section scar so can't comment on that

    The other thing to be aware of, although I'm sure you know, is that a hysterectomy won't cure any remaining endo outside of the womb and there is the possibility that the additional scar tissue that the hysterectomy would generate would give it more to feed on and it may flare, but as you say you've got that under control I'm guessing they're monitoring you closely or you are very in tune with what's going on so that needn't necessarily be an issue for you.

    Hmm. If they are happy that they can do it via laparoscopy, it does sound as if it wouldn't be too complicated. And if they're leaving you with one ovary, it's not going to plunge you into menopause. Overall it does sound as if you'd be better off without that womb!

    Good luck :) xxx

  • Hi there, I was diagnosed with adenomyosis in May and my consultant wanted me to try the Mirena first, he said it was because it has been known to help with the pain side of it. I'm in constant pain 24 hours a day and my painkillers don't always help. I had the mirena put in end of June and so far, no difference. He said it could take 3 months but I've read other women have waited as much as 6 and 9 months for any relief. This is my fourth treatment since 2007 and I'm finding it hard to be positive. All I can suggest is maybe give it a try first as it doesn't involve major surgery, I've read that a few women have found it helps. Then, if it doesn't help you, go for the hysterectomy. It's a tricky one for sure, I have said that if this doesn't work then it may be hyst time. If the Mirena does work for you then no need for the surgery. Hope you can get some relief either way.

    A x

  • I have been diagnosed today with adenomyosis as they couldn't find any endo yet the treatment I'm on works for endo and adeno and it's working for me. Might be worth asking if you can try this first. I'm on norethisterone, it's a high dose of progesterone and completely stops your periods. I was in constant pain and ending up in a&e whenever I came on my period until I tried these tablets. I take them all the time and only break every 6 months. I'd ask your GP if you can try them before anything else hun, good luck and I hope they work for you as well as they have for me xxx

  • Hi, I had the mirena for suspected Adenomyosis a year ago, after I had a c-section. It took 6 months to settle completely but it has provide me with a much needed break from the constant pain/bleeding/lack of oomph etc, obviously do what's right for you but it may be worth a go. Good luck with everything x

  • Thanks so much for all your advice. The pain is now getting worse and is really affecting my day to day life so I have just contacted my consultant to say I think I am going to opt for the hysterectomy!! Gulp! Hope I've made the right decision x

  • Hello.

    I am in a similar situation that you were in a year ago.

    Can I ask if you went ahead with the hysterectomy ?

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