UPDATE ON NEUTROPENIA AND MIRENA COIL

UPDATE ON NEUTROPENIA AND MIRENA COIL

ITS BEEN A WHILE IM AFRAID, BUT I AM IN NEED OF A GOOD OLD MOAN, SO HERE GOES. THE LAST 2 YEARS HAVE BEEN HELL ON EARTH. I HAVE DEVELOPED SEVERE CHRONIC NEUTROPENIA AND MY NEUTROPHILS HAVE BEEN VERY LOW THROUGHOUT THAT TIME. HIGHEST POINT 0.8 LOWEST POINT (AT PRESENT 0.1). THEY PUT IT DOWN TO MY RA BUT I AM NOT CONVINCED. I HAVE HAD RA FOR 25 PLUS YEARS BUT NOT ALWAYS BAD. I DONT THINK I HAVE A PROPER DIAGNOSIS YET. I GO EVERY MONTH TO THE HAEMATOLOGIST WHO CHECKS MY BLOOD AND SENDS ME ON MY WAY.

I AM DUE TO HAVE A HYSTERECTOMY ON 12TH MARCH TO REMOVE THE MIRENA COIL THAT WAS FITTED ABOUT 11 YEARS AGO NOW. AFTER LOTS OF SCANS ETC THEY HAVE DISCOVERED THAT THIS IUD WAS NOT EVEN INSIDE MY WOMB BUT HAD BEEN INSERTED THROUGH MY UTERINE WALL INTO THE MUSCLES ON THE OUTSIDE OF MY WOMB AND THERE IT HAS BEEN ALL THESE YEARS. I JUST KNEW SOMETHING WAS WRONG. MY FAMILY THINK THAT THIS FOREIGN BODY INSIDE ME MAY HAVE CAUSED MY WHITE BLOOD CELLS TO BE SO LOW BUT THE DOCS DONT THINK SO. THEY MAY NOT OPERATE IF MY NEUTROPHILS DONT RISE A BIT. I SPENT 6 MONTHS IN ISOLATION IN 2012 BECAUSE OF GETTING NEUTROPENIC SEPSIS, AND AGAINST DOCTORS I WENT BACK TO WORK BECAUSE I COULDNT KEEP MYSELF LOCKED AWAY ANY LONGER. THE DOCS SAID I WAS WALKING A TIGHTROPE BY GOING BACK TO WORK BUT WHAT COULD I DO. I HAVE HAD 18 MONTHS BACK AT WORK BUT NOW I AM NOW OFF WORK AGAIN WITH THE 0.1 READING AND MY COMPANY WONT PAY ME MY WAGES ANYMORE AND HAVE EVEN STOPPED MY ANNUAL LEAVE ACCRUING. TALK ABOUT KICKING YOU WHEN YOU ARE DOWN. THATS WHAT YOU GET FOR 20 YEARS LOYALTY TO A FIRM.

I WAS ALSO TOLD I HAVE A SERIOUSLY LOW VITAMIN D LEVEL. I HAD A DEXA SCAN WHICH I HAVENT GOT THE RESULTS FOR YET. MY JOINTS AND MUSCLES HURT ALL OVER MY BODY. I AM ON HYDROXYCHLOROQUINE AND WAS ON CYCLOSPORIN BUT THEY HAVE TOLD ME TO STOP TAKING THAT BEAUSE MY NEUTROPHILS ARE SO LOW AND THEY HAVE PUT ME ON ANTIBIOTICS. THE CYCLOSPORIN WORKS AGAINST ANTIBIOTICS.

I AM WORRIED ABOUT THE HYSTERECTOMY, EVERYONE SAYS OH YOU WILL BE BETTER ONCE THAT IS OUT, BUT THERE WAS NOTHING WRONG WITH MY WOMB IN THE FIRST PLACE. MOST WOMEN HAVING THIS SURGERY ARE USUALLY MUCH YOUNGER THAN ME. I HAVE TURNED 60 NOW AND NOT IN THE BEST OF HEALTH AND IM WORRIED ABOUT THE SURGERY, WORRIED ABOUT THE BLOOD, WORRIED ABOUT PAYING MY BILLS, LOSING MY JOB, LOSING MY HOME, BEING WORSE AFTER, ON AND ON AND ON. OK THATS ENOUGH THEN, MOAN OVER. THANKS FOR READING. LINDA XXX

PS I REALLY DONT KNOW HOW I GOT A YELLOW FLOWER ON HERE :)

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11 Replies

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  • Linda i had to have a hysterectomy just before my 60th birthday because of scar tissue when my daughter was born. I have regretted it to be honest. I was in so much pain it was a relief when it was over. You might find your health comes back after the op as the object causing all your problems will be gone and when you have recovered you may find you can go back to work. Your not planning on having anymore children are you,then you won't need your womb anymore and it will bring you some peace of mind regarding your health. Love Sylvia.xxxx

  • Thank you Sylvi, Im hoping i don't regret it either. Its not the best age to go through surgery is it? I will let you know how it goes. Thanks again. Love Linda xx

  • Linda I had a Mirena and it was one of the most evil things I think I have ever experienced it caused me no end of grief. Theya re also supposed to be removed no longer than 5 years after insertion so whoever was looking after you certainly wasn't and how negligent of them to have punctured your uterus. It suspect it has been one of the added causes of what is wrong with me. I also had a hyster after having it removed and it was one of the best things I have ever done. I no longer have the misery I suffered with for most of my life. Hystersisters is a great supportive website and is about all things hysterectomy I would encourage you to go there if you have any questions. Good luck and I hope it goes well for you

  • Thank you so much. Yes the Mirena should have been removed 5 years after insertion, at least they would have found out then that it was in the wrong place and I would have been 6 years younger than now for the surgery. When i saw the doctor at 5 years they just said if its not causing trouble i may as well leave it another 5 years! The first 2 years after it was inserted were agony for me (no wonder). I even went back and they said it was ok. I have a solicitor on the job but I feel like all the medical people are treating me rather cold now. I have to go down that road because I could lose my job over this and if that happens, my home too. This has been a very hard decision for me to make, having the hysterectomy. Thanks again for the good wishes. Linda xx

  • I had excruciating pain with the Mirena and it seemed to cause all sorts of other problems too. it is plain negligence on their part. stick to your guns and make them accountable. I hope you are successful.

  • Hi Linda, I would like to wish you all the best for your surgery and hope it will be the turning point for you. I've had a Mirena coil in the past and it caused me nothing but problems but to have it inserted incorrectly and left for so long is just appalling. You've had a terrible time but hopefully this will be a new beginning for you. I had a hysterectomy in April last year and also found the hystersisters site very useful. There's also a Facebook group called hysterectomy sisters UK which has a lovely supportive community like this one which I would highly recommend. Warm hugs to you x x

  • Thankyou for your support. I will try the hystersisters site. I should never have been put in a position like this but it is good to know that there is somewhere i can voice my concerns. Thanks again. Linda xx

  • Hello Linda, I'm sorry to hear you're having a such a tough time. I also have consistently low neutrophils (not as low as yours but much lower than normal range) and they are considering referring me to an expert, I think it may be an immunologist but not 100% sure. I also had low vit D (I don't know if there was a connection there) and the DEXA showed borderline osteoporosis in hip and spine. Good luck with your operation.

    Also - the way you are being treated by your workplace is terrible and even sounds unlawful - have you spoken to the Citizens Advice Bureau about it? You could also write to your local councillor/MP.

    Take care, Fran

  • Hi Fran, thanks for your concerns. I do feel let down by my company and will have to get some strength from somewhere to fight them. I also feel like the doctors have just put me on the shelf and don't know what to do with me!. xx

  • Hi Linda, I just found this guide from CAB which gives advice on what to do when your employer won't pay you when you're off work because of sickness - hope it is useful: adviceguide.org.uk/wales/wo...

    It's upsetting having low neutrophils and feeling like the doctors don't know why. I really hope things improve for you soon. xx

  • thankyou so much, i will check this out. xx

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