Non-stop nerve pain - something wrong wit... - Endometriosis UK

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Non-stop nerve pain - something wrong with mirena?

_Tamsin_ profile image
6 Replies

Hi all. It's been a while since I have posted here.

A year ago, I had the mirena coil fitted in an attempt to treat my endo. After about 6 months, it started helping. However a month after it was fitted I developed nerve pain in my pelvis, horrible pain that feels like electricity and makes me feel sick. I was admitted to hospital in the most agony I have ever been in, severe endo inflammatory type pain with nerve pain as well. The gynecologist concluded that the mirena had caused this nerve pain and put my on amitriptyline (75mg a night). It helped, but the nerve pain never went away, but was managable.

Over the last few months my symptoms have worsened and I have been in quite a lot of pain. My nerve pain has got really really bad, and over the last two weeks its got to the point that I am in constant pain, like I am being electrocuted from the inside! It is so painful and its not going away. I'm worried that this is being caused by my mirena and that its going to have to come out, because I honestly feel like it might be doing some damage in there.

Has anyone else experienced this? I'm hoping to get hold of my specialist nurse tomorrow so will hopefully get some advice. Not sure how much longer I can bear this pain though.

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_Tamsin_
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6 Replies
brunette33 profile image
brunette33

I had similar pain, but not has bad I had the mirena removed and felt so much better, im on a contraceptive pill called zelleta use to be called cerazette it helps more than the coil but still get electric type pain when due on, hope you get this sorted xx

_Tamsin_ profile image
_Tamsin_ in reply tobrunette33

Thank you for your reply, I'm glad to hear that the pill has helped you more than the mirena did. Hopefully will get some help from my specialist if she gets back to me soon xx

brunette33 profile image
brunette33 in reply to_Tamsin_

I do hope so, wish you good luck x

_Tamsin_ profile image
_Tamsin_

Thank you, just about to PM you x

Quietstar123 profile image
Quietstar123

I’m so glad I found your post. I have had the same symptoms but never linked the two. I have made an appointment to have the minena coil removed.

For 5 years I have suffered this pain with lost feeling in my leg/foot which resulted in a broken leg and many falls. Thank you for posting.

Henley13 profile image
Henley13

Did you have the Mirena removed in the end and did it help? I have pudendal nerve pain since my second last lap for endo when I had mirena fitted. The mirena really helps my adeno so I'm reluctant to remove it but the Pudendal nerve pain on sitting is really getting me down. Don't know if surgery caused it, endo is irritating the nerve or if Mirena has a part to play. All so complex!

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