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Mirena coil

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milady Sun 06-Sep-15 13:08:25

Hi, I am post menopausal and was experiencing hot flushes, night sweats and prickling/ itching sensations for 16 years. After several referrals to dermatology, allergy etc I saw a gynaecologist who put me on Tibelone HRT , 'no bleed' but unfortunately I did bleed and so they inserted a Merina coil. I then developed strange neurological sensations to include tight feelings around my legs, stinging, pins and needles in hands and feet, but worst of all incredible icy sensations in my arms and legs.
To cut a long story short I have now seen a neurologist who thinks I have peripheral neuropathy(small fibre) and is sending me for a head and spine MRI scan.
Most of the worst neurological symptoms started after the Mirena was inserted so I have now asked to have it removed which happened two days ago. I am now bleeding, feeling light headed and very out of sorts.
I find the whole thing overwhelming and frightening.
I don't know whether I should come off the Tibelone as I can't face a return to the hideous night sweats and hot flushes and I am afraid for the future regarding the neurological disorder as it is apparently progressive.
The icy sensations have been a little better since removal of the coil and I am seriously hoping that the other neurological sensations will subside.
Has anyone else suffered neurological symptoms on the Mirena coil?

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Grannyknot Sun 06-Sep-15 13:26:36

Hi milady I don't know anything about the M coil and neurological symptoms but just wanted to say you sound as if you are in a state. The coil was only removed two days ago so you may feel better after a few more. I stopped HRT abruptly because it didn't agree with me and that made me feel ghastly. I was working for a psychiatrist at the time (who had been an obstetrician) and he said it was my body adjusting. So give yourself a bit of time and take it easy.

I've always been a bit dubious about "depot" style of hormonal medication, for myself. You were clearly desperate with menopausal symptoms.

flowers I hope someone with more knowledge than me comes along soon.

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Grannyknot Sun 06-Sep-15 13:29:58

There's loads of discussion about it on Mumsnet:

www.mumsnet.com/info/search?query=mirena+coil

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milady Sun 06-Sep-15 15:26:20

Thanks so much for your response. Yes, I have looked at mumsnet but of course all these folks are a bit younger than me and generally not post menopausal. I am 64 now and was put on HRT before, then taken off again when 52 as I developed fibroids and my sister got breast cancer so all things considered it didn't feel safe to stay on. They wanted to do a hysterectomy at the time but as I knew that the fibroids would go , once I was. truly through the menopause and off the HRT so I said no thanks.
It's all so overwhelming isn't it? I went off it the first time cold turkey and like you had a miserable time with mega night sweats , flushes and total insomnia. So I'm rather afraid to come off it again and must wean off this time at least.
During the course of the investigations I have been found to be very Vit D deficient (reading of 14) and this has been remedied with a supplement. Before seeing the gynaecologist I was offered Prozac for the hot flushes and prickling! I declined as we have Glaucoma in the family...a contraindication to its use...no one thought of that, I found out by looking on the Internet. Then I have been offered Lyrica for the neurological symptoms before a diagnosis. This has been dragging on for so long now and I feel exhausted by it all.
I would like a holistic approach taken by the professionals and so have tried a herbalist , acupuncture and had a bio meridian assessment. All to no avail as yet.
Beginning to feel out of control of this situation and very afraid that the MRI SCANS might throw up something sinister or that the blood tests and conductivity tests will not be able to find the cause for the neuropathy. If this is the case the situation might not be able to be remedied and will be progressive.

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