anyone's endo sypmtoms continuing even with mirena?

[Sarah_Meriel]

Hi lovelies!

Wondered if anyone else feels a bit disappointed with the "miracle cure" that is the mirena?

My periods have nearly disappeared - win - but I still get pain. Random Pelvic pain, leg pain, period-type pain, varying from mild to severe.

I'm 7 months in to the mirena. I know I should probably give it longer, and that it's probably stemming the growth of the endo. I guess it's just the scepticism within me over any treatment I've ever had for this condition. Two surgeries have left me with what I think are adhesions, adding to the pain. Plus I know they never quite get all of the endo, and there are never any guarantees with it not growing back.

Also - sex drive has almost died completely since being on it. That's a big con, especially when this condition dictates so much of your sex life anyway!

Ok, rant over. It would be so nice to hear from you if you are feeling similar - or indeed if you feel like you have a success story to tell me!

Thanks, Sarah x

[Jublyt]

Hi Sarah

I've just joined but had a mirena in march following hysteroscopy and polypectomy. Since then I've had lots of bleeding, but old blood, with black clots, and find the pain is a lot worse since I had it. Also my tv scan 6 weeks ago showed a fibroid, haemorrhagic cysts and another endometrial polyp.

I keep having time off work due to the pain.

[Faybee87]

Same here! Keep being told it's the 'gold standard' 🙄🙄 I went to my gp a couple of weeks ago and had a bit of a hissy fit about the bleeding (I'd been bleeding since my lap in march from it) got given mefenamic acid which has stopped it and helped with the pain. I have also been reading the Period Repair Manual and as a result cut out A1 casein, started taking zinc and magnesium supplements and started doing yoga (done in that order, yoga would have been unthinkable with the way I was feeling before) . I honestly feel so good for it, it's been a bit of a revelation for me. Still getting some pain but not as bad and the difference it's made to my fatigue is almost miraculous. I was almost at the point of demanding they remove the coil but definitely think I can deal with it until at least 12 months have passed now. Sex drive is now coming back as well so I'm really pleased with that.

Have you spoken to your doctor? I'd definitely recommend that book mentioned above as if you haven't read it, it might give you some ideas of different things to try that could help. It has a great section on how to talk to your doctor as well. It's horrible feeling out of control of your own body and that's how we're made to feel much of the time.

Hope you find something that makes you feel better x

[MandaBunny]

Hi Sarah

Me too!! I've not been formally diagnosed. Had a "negative" lap last September, but was performed by a general gynea. Still convinced it's endo though.. which other condition causes severe abdo pain in cycles?

So they inserted the Mirena as I was having lengthy and heavy periods.

Like you -periods have dwindled to nothing, which as you say, is a bonus.

But I'm still getting cyclical pain.

This confused the heck out of me initially; pain without periods?! But I've since heard that you can still have a menstrual cycle without the bleeding.

I'm keeping a pain diary and lo and behold - the pain occurs exactly upon 2 occasions each month ie. Ovulation a "menstruation".

I'm now going to push for an appointment with a specialist as I just can't live like this anymore. It's gone on for too long.

Like you, my sex drive is in my boots! Which it has been at times anyway, due to the pain I have during intercourse.

I do dread to think what the pain and bleeding would be like without the coil though, so I'm sticking with it for now.

What do you think you're going to do? I suppose you need to weigh up the pros versus cons and for me, it's a definite advantage not having any bleeding!

I hope it works out for you darling.

Amanda xx

[AnnabelM]

Hi Sarah,

Your not alone!! I was told that it was the best thing out there. I've had the Mirena Coil for a year now and still have pain. I've had 3 severe flair ups and my bleeding is more constant now. Saw the endo nurse in April who put me on cerezette but still no change still experiencing pain and bleeding. I definitely don't think it agrees with me, and will be asking for it to be removed. All the best with yours and I hope that your pain settles soon x