Getting the Mirena Coil removed - Endometriosis UK

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Getting the Mirena Coil removed

Spaghetti_12 profile image
10 Replies

Advice needed please, I feel desperate!

After having a laparoscopy and the mirena coil fitted in feb 23 for endo I feel I’ve had constant problems.

I was still bleeding constantly for months after so I then started having prostap injections in October of last year. That helped until my last injection around 8 weeks ago. I had some bleeding a few days after and I’ve since been bleeding for 3 weeks straight. The hot flushes have also come back so I’m now on oestrogel as well. I know the coil isn’t for everyone but I’ve really given it a chance.

Has anyone come off of everything and just let their body do its thing? Or is it not wise for endo. I just feel my hormones are all over the place and I just want to feel myself again.

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Spaghetti_12
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10 Replies
bearbellabailey profile image
bearbellabailey

hey I had the coil fitted during my surgery in October and only lasted 5 days before my doctor booked me to have it out at the surgical unit my oxygen levels had dropped the bleeding and pain was horrific my pulse was through the roof the second it was out it was the best feeling in the world the instant relief I got as soon as it was out was the best feeling in the world then started decapeptly injections which stopped my bleeding completely I do have overlaps of the injection sometimes every 6 weeks when it's a 12 week injection but that's now suspected bowel endo xx

Spaghetti_12 profile image
Spaghetti_12 in reply tobearbellabailey

I think I definitely need it out! Glad you are better now it’s out x

PeriMenoEndo profile image
PeriMenoEndo

I had mine removed after 3 weeks post surgery. It was too painful and made my bladder symptoms worse. I’d had one before for 6 months and it dried everything out and then I got a chronic UTI which has never gone. Some people get on well with them but we know our own bodies so if it isn’t right for you, get it removed. Some doctors in the US and Canada prescribe continuous utrogestan (body identical progesterone) for suppressing endo/adenomyosis so I’m trying that alongside oestrogen patches and vagifem as my bladder needs oestrogen but my womb doesn’t 🤦🏻‍♀️ Such a puzzle isn’t it?!

Spaghetti_12 profile image
Spaghetti_12 in reply toPeriMenoEndo

It really is a puzzle! I’m just fed up of being told to try this and this and it will help. I think my body has had too much and it needs a break from it all!

PeriMenoEndo profile image
PeriMenoEndo in reply toSpaghetti_12

If you feel like that, have a break! Have you come across Lara Briden before? Her blogs are great and it might be worth trying her diet and supplement advice for 6 months and see how you go. Good luck, I really sympathise. It’s not an empowering feeling following medical advice that makes you feel worse. Id also really advocate for some hippy yoga and lots of pampering- we need nice sensations in our bodies to counteract the pain to help us feel safe…and feel less pain as a result. Check out Curable too, might help alongside the diet and supplement regime x

RosieFalkor profile image
RosieFalkor

I’m having mine out today!

I’ve had it in for 8 months after my doctor persuaded me to give it time. In this time I’ve had palpitations, face tingling, extreme exhaustion, back pain, and ended up having 5 days in hospital with suspected pulmonary embolism! I’m ok, but enough is enough! I wish I had trusted my instincts and had it out quicker.

Spaghetti_12 profile image
Spaghetti_12 in reply toRosieFalkor

That’s just it, we know our bodies and I’ve been trying to tell myself that it will sort itself out but it’s not happening. Hope it goes well today on having it removed x

Sunset-lady profile image
Sunset-lady

Doctors need to stop giving women diagnosed with endo progestin. It makes things worse. We need natural progesterone. Get it out xxx perhaps go back on prostrap once it's settled.

Sunset-lady profile image
Sunset-lady in reply toSunset-lady

I'd be very careful with how much estrogen you are taking. That's possibly what is prolonging and exacerbating the bleeding. If you have endo then you'll probably be estrogen dominant xxx

shadyshaderton profile image
shadyshaderton

Hi

The first merina coil I had for about 4 years then it was causing problems as I think it had reached end before usual 5 years.

I was persuaded to give one another go and did but withing a few weeks I was in all sorts of pain and generally unwell with a&e visits where not even morphine was helping. I had to fight to get them to remove it urgently (3rd trip to a&e in a week). Within a few days I was back down to my normal pain meds. And was put back onto prostap

All I can say is you know your body and if you were experiencing additional pain etc just with the coil in and these haven't resolved with the extra stuff they've put you on then go with your instincts.

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