endo and mirena: Hi all, I have had the... - Endometriosis UK

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endo and mirena

Wede profile image
Wede
19 Replies

Hi all,

I have had the mirena coil now for almost 3 weeks and have experienced pain since it was fitted. I had it done just over half way through my cycle and started to bleed the day before I would have been due on anyway. I have been light bleeding now for 11 days and like I said had pains throughout.

Has anyone else had a similar experience or is it just too early to tell if this is going to work for me?

Thanks 😊

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Wede profile image
Wede
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19 Replies
Fizzypoptastic profile image
Fizzypoptastic

Hi there,

I had the Mirena implant a year ago. I bled / spotted almost daily for 4 months. I then had light bleeding once a month for a further 6 months. I haven’t had a period for 2 months now….can’t say I miss them tbh. Mirena has calmed all my Endo symptoms. Wish I’d had it sooner.

Best of luck. ☺️

Wede profile image
Wede in reply to Fizzypoptastic

Thanks for your comments. It’s encouraging to hear that it’s calmed your symptoms down and periods too, that’s what I’m hoping for 🤞

Thanks for replying x

Jem33 profile image
Jem33

I had the mirena fitted on day 34 of my cycle which I think was a big mistake as they fitted it when I was due to have a period and ended up with an acute infection one month in. I lasted just over 3 months before having it removed as the pain was unbearable everyday even moving it felt like something was stabbing into my womb. I also only had 5 days in those 3 months with no bleeding or brown/black spotting.

They checked it was still in the right place and couldn’t see anything untoward with it in particular so did try to wait out the 6 months they recommended for it to settle.

When it was removed it was like a release of pressure and although my endo pain is still there the pressure and stabbing pains have gone.

My advice is you know your body better than anyone and will know what’s right and what’s not. Take a diary of your symptoms and keep in touch with either your GP or Gynae if it’s not settling.

Good luck 🤗

Wede profile image
Wede in reply to Jem33

Thanks for your comments and I’m sorry to hear it didn’t work for you 😞 I’ve read mixed reviews on the coil but it’s my last chance saloon before a hysterectomy so I thought I’m going to have to try it at least. I’m going to leave it another week and then contact my GP to see what she says.

Thanks for replying x

Jem33 profile image
Jem33 in reply to Wede

oh yes it definitely works for some ladies I just wasn’t one of them sadly. I really hope it works for you though.

Have they considered decapeptyl with tibilone for you before a hysterectomy? That’s what I’m trying but not even a week in so couldn’t really offer any info on what it’s like yet.

Wede profile image
Wede in reply to Jem33

I haven’t heard of that, I had prostap injections and couldn’t tolerate the headaches so only had 2 months worth and had to come off it.

I’ve had the mini pill aswell but just continuously bled on that even with 2 tablets a day and as I’m anaemic it just wasn’t worth it.

I hope that works for you though, I will keep my 🤞 x

Jem33 profile image
Jem33

I think that’s the same thing as decapeptyl.

So sorry your going through all this and now at the stage you are.

Sending you warm hugs 🤗

Wede profile image
Wede in reply to Jem33

sending positive vibes and hugs to you 😊

AppleandPear profile image
AppleandPear

Same as others said, Mirena didn't settle down for about 6 months, and have had increasingly less of a period, at about a year there is hardly anything. I would say the endo is okay but I have adenomyosis and overstrained stomach muscles and pelvic floor and constant inflammation because of the condition. If you still get muscle spasms, twitches or bladder retention and generally sore muscles because of it, I highly recommend 5 mg to 10mg of amitriptyline a night, and sitting as little as possible (get a standing desk).

Wede profile image
Wede in reply to AppleandPear

I have been prescribed that but haven’t taken it as of yet. I will look into the multivitamins and iron as I’m constantly tired all the time. I have a B12 injection every 3 months but it doesn’t seem to make a difference anymore 😫

AppleandPear profile image
AppleandPear

Oh yeah, take multivitamins and extra iron, we all tend to be borderline anaemic with this and you'll feel run down when you don't need to be.

Minnie153 profile image
Minnie153

Hiya,

Cramps are normal as is bleeding on and off for the first 6 months, but once settles I loved mine it helped pain and bleeding for almost 11 years (changed every 2) until I hit perimenopause then needed hysterectomy for constant bleeding and developing more endo due to bleeding.

Hope you manage to persevere, I think they’re a great help.

Good luck

Wede profile image
Wede in reply to Minnie153

thanks for your comments, glad to hear it worked for you but sorry you had to go through everything else. X

LawsTra profile image
LawsTra

The first coil I had fitted by my GP was not done properly and had severe pain for 2 1/2 years. I had it removed and all pain suddenly stopped. I had a new one fitted at GUM clinic where I was scanned to ensure it was fitted properly by the gynea doctor and had no problems or pain since. Doctor should have advised you to expect some blooding in the first few months until this settle. Go to your local GUM clinic to get it checked and explain. Don't go to gp they are useless and you don't need to be referred to clinic

Wede profile image
Wede in reply to LawsTra

I’m due an appointment with my consultant and an ultra sound as I have a cyst of my ovary so they may be able to check it there x

LawsTra profile image
LawsTra

Hope all goes well with you I have only seen my consultant once in 17 years. She only seems to communicate via my GP. I also have PCOS, endo and fibroids.

F1Lucy profile image
F1Lucy

Hello!

I had one fitted and bled lightly for about 6 weeks afterwards. Had a lot of pain too. It gradually eased up and then I bled every now and then (really random and not fitting with usual patterns). Sometimes just for a day or two at times.

After 6 months and starting to wonder if I should have it removed, the bleeding stopped and the pain really reduced to almost nothing. I've had it in 3 years now and I'm really pleased I did it.

Unfortunately I'm not waiting for a hysterectomy as I have another 6cm cyst. But the mirena really helped until this nasty little cyst appeared.

I think it can take a little longer than we think to kick in, maybe it's because of endo messing with everything. Really hope it offers you some relief soon!

Wede profile image
Wede in reply to F1Lucy

thanks for your comments, are you having a hysterectomy did you say?

F1Lucy profile image
F1Lucy in reply to Wede

Hello! I am. I have another cyst which grew through the fallopian tube, so the consultant suggested it as a way to hopefully sort things out. When I had the mirena fitted, I'd already has one ovary removed about 10 years before. and I went about 3 years with the mirena without any issues at all

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