Just had my lap and been diagnosed with endo. Have had cysts drained and extensive endo everywhere, very worried as dr wants to fit mirena.

[Mrscinq]

[Chrissie66]

Hi

What are you specifically worried about? The diagnosis or the Mirena?

C xxx

[Mrscinq]

Both I suppose. I've heard lots of things about mirena and very worried about long term prognosis.

[Hidden]

Hey there,

Some women find the Mirena an absolute miracle - no periods (once the initial spotting settles) and good control of symptoms. Others have problems - I suffered side effects and had mine removed after 7 months. I generally find that if I understand why the doctor/consultant is recommending a particular treatment for me I can accept it or debate depending on situation. Knowledge stops me worrying too much usually.

As for Long term prognosis with endo it is so variable for different women - your age, fertility status/choices, whether you work/what you do, response to treatment etc all play a part in how it will affect you. When the endo isn't controlled life is tough but sometimes I look back at times when I wan't coping and think to myself "but the pain wasn't even this bad then" - I think I have learned ways of managing the pain and my life around the condition. And my fab husband is invaluable.

Information and support are the watch words of Endometriosis UK (charity) they have a great website endometriosis-uk.org/inform... and nationwide support network endometriosis-uk.org/suppor...

Hope this is helpful! x

[Jojo23]

Hi just to say after my 2nd lap I had the merina coil fitted and after the first month I've not had a period for over 2 years its helped massively xx

[Chrissie66]

What RockChick said, all of it

Apart maybe from the knowledge thing, unless you're getting that knowledge from your own experience, your own consultant, the endo sites RockChick mentioned, or the lovely ladies on here. Try not to read too much on the internet; remember that people tend to report horror stories much more than they ever post success stories.

There's an excellent book, Endometriosis For Dummies, which I still dip into now and then after 20 years of living with endo, especially when I need a bit of calming down! It's on Amazon here - amazon.co.uk/Endometriosis-... and you can probably get it from all other good book shops too

With regard to the Mirena - I've just had mine replaced after five brilliant years of it, it's in the 'settling down' stage at the moment but I know I have to give it some time to do that. After my last one 'kicked in' it was brilliant, my previously brutal periods were reduced to a day of pink spotting, if that.

This disease is a bit of a pig (that's putting it mildly) because it's so unpredictable, and everybody will have different experiences with it. I know it's scary when you've first been diagnosed, and it's absolutely no fun, but it won't kill us. And what doesn't kill us makes us stronger, apparently!

Good luck, and you know where we are

C xxx

[Impatient]

It's been fantastic for me... but I am a little surprised the gynae didn't discuss possibly fitting a Mirena in the conversation BEFORE your op, so if endo was found as suspected, he could have put the mirena in while you were knocked out cold. By far the very best way to get it put in. Most women (even non endo ladies) have a really uncomfy and often painful time getting it put in them.

So if you do opt for it, and they want to put it in while you are awake.... do take very strong pain killers before going to your appointment, so they have kicked in.

It doesn't work right away, but builds up over the course of a few more periods, then all of a sudden if you're lucky, the periods stop, though you can get occasional pale pinky spots of diluted blood when you 'wipe' after a trip to the loo, it's nothing at all to what real periods are like. I wouldn't say it is completely symptom free as I do get the odd niggle of discomfort, nothing that needs pain relief though, and OMG no more period cramps and pain.

And I did manage to have one more new ovarian cyst which burst and hurt a lot.

Overall, I have a completely different life now I am on it. Saves an absolute fortune in sanitary towels/tampons and pain killers and no more stress about when I would be 'on', or what activities and holidays to book and when. All of those stresses are no more, and it is liberating not to have to worry, not to have to take the pill each day, not to have to carry emergency supplies in one's handbag every day.

For me it has been really life changing. I wish to god I had had this 30 years ago (it wasn't invented then) and ever since !! LOL.

[Efarms37]

It is great to read the success stories for mirena but there are always two sides. I have tried 2 mirenas both for around 7 months and just couldnt stand the side effects so had them out. I was really frustrated because it is an easy solution for endo if you can get on with it. The reason I had a second fitted is I wanted to make sure it was the mirena causing weight gain,bloating mood swings etc and it was. I am now using natural progesterone cream which I find highly effective and does not give any of the side effects I was having from the synthetic progesterone in the mirena.