Mirena coil

[Jade2997]

I’ve had the mirena coil since may but every month I’ve been bleeding a lot more than usual and I have been in absolute agony with it still and it last for about 3-4 weeks, the gynaecologist have said they think it’s endometriosis which is why they suggested the coil, but I was wondering if anyone else has had this coil and not had any help with it or if it’s just me? Maybe I need to wait a bit longer I’m not sure but atm it just seems pointless

[Chroom23]

Hi there, the coil didn't help me, I bled daily, heavily for a year with it. I had fibroids so huge they prevented urination on times. I'd tried everything else and nothing worked for me, so had a hysterectomy eventually. Which was the best thing for me. But I didn't have endometriosis, just heavy bleeding, made worse for me by the coil. I hope you get some answers x

[635703]

I’d you can get a GP appointment maybe try that first.

From 2007 to 2021 I have had Mirena coils. They were positively life changing for me BUT this was after a diagnostic laparoscopy to confirm I have Endo and ablation (burning off the Endo) Although I had a tangerine sized Endo cyst on my right ovary. That’s got to be exhausting right?!

So I cannot compare experiences with yours because our situations are different.

My personal view on this practically is:

1) Ring endometriosis.uk helpline but google opening times - get advice on a BGSE Centre. These are specialist Endo centres with experienced surgeons. Ask to see a specific Gynecologist who is an Endo specialist on that list.

2) Visit your GP or ring them. Write notes before phonecall. Tell them you want to be referred to see XYZ specialist endometriosis surgeon for a diagnostic laparoscopy please.

3) Tell the GP to get the Mirena out ASAP and explain why. You may also need a ultrasound scan to see what’s going on. You can ask the GP this too.

Take no bullshit and be clear, polite and firm. These are your rights. This is your health and your body.

Other may have stuff to add to this.

Don’t be upset if there’s a ridiculous waiting time as we are all in this position.

Unless you or your spouse has private healthcare. Or the spare cash to pay privately it’s likely to be a long wait.

Sending you a hug and so much love - I’m so so sorry this is happening, the pain and the bleeding is exhausting. You will be well again my lovely.

You take excellent care. I went in Amazon and bought an electric heat pad and a TENS machine. They help me. People love the BeYou period patches, balms and bath bombs. Personally I found cheaper chinese period patches, which are fab!

Do DM me if you want any info. Or a chat. Hope this helps X

[claudia_91 Moderator Endometriosis UK in reply to 635703]

Hi Jade2997

Sorry to hear you have been suffering whilst on the mirena coil. There is support for you here within this community. As 635703 has suggested, you can speak to someone by calling our Endometriosis UK helpline, which is run by people who have endometriosis and understand what you are experiencing. Details for our current rotas are here: endometriosis-uk.org/helpline

It would definitely be worth contacting your GP to discuss your symptoms, and asking about the possibility of endometriosis. We have information to help prepare you for your appointment here: endometriosis-uk.org/visiti...

Hope you find some relief soon. Take care 😊

[Jade2997 in reply to claudia_91]

Hi Claudia thank you for your reply, I have had several appointments with my GP and gynaecologist, I’ve had an ultrasound which they said seemed fine from what they could see but the symptoms I’ve explained to them over the past year is making them believe it’s endometriosis which has lead to them giving me the coil but It hasn’t seemed to ease the pain at all, I’m not sure if I should have it taken out or wait a bit longer to see if it starts to work, whenever I try and call my gynaecologist to possibly bring my appointment forward they never answer, I just don’t know where to go from here, I will definitely give the help line a call though thank you so much!

[Bobs0207]

I got the mirena fitted in May this year during my diagnostic lap which found stage 4 endo. I am waiting on another lap to get my endo removed. My first two periods with the coil were absolutely awful- extremely long, heavy and excruciatingly painful. I experienced daily pain until around August time, where I sometimes really struggled to walk and function normally. I was adamant it had pierced my uterus or something as it was so painful, but I had an ultrasound done a little while ago and it was in the perfect position. Even tho the pains were still awful, knowing it was placed correctly did help a little.

However, I have been in so much pain I’ve considered getting it removed several times. So I know the struggle in trying to decide what to do.

I was skeptical but I decided to give it a few more months. I’ve finally started to go some days with no pain at all. I also haven’t had a proper ‘period’ since August now (touchwood!). However when I do get cramps they are extremely painful, and come at the most random and unexpected times (currently sat here in excruciating pain!).

If you feel physically and mentally able to wait it out to see if it gets better then I would say try it. But I have to admit it really was a struggle at times and I couldn’t see how so much pain could possibly be worth it. It really is different for everyone.

Wish you the best of luck with it!!