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Hi. I'm looking for some advice and possibly reassurance from anyone going through the same thing as me.
Basically, I turned 50 in September last year but I think I have been perimenopausal since my early 40s. My periods started becoming erratic in 2015 and I had a scan which showed an endometrial polyp. This was removed in the July and my periods were normal after that until November 2015 when I started my period as usual but never stopped. The bleeding was light and intermittent to start with but by Christmas I was bleeding so heavily and passing such large clots, I couldnt leave the house. A scan showed a thickened lining and I was referred to gynaecologist, but only as a routine so didn't get an appointment until the August! Meanwhile, the bleeding continued and I became anaemic. I had a second hysteroscopy in September 2016 and a second polyp was removed. I started bleeding again at the end of October and again didn't stop. By this time I had moved county so had to start all over again with gynaecologist referrals. The bleeding became a bit intermittent and every time I saw the gynaecologist, I wasn't bleeding so we decided to watch and wait, but by mid 2017 the bleeding had become pretty constant again and I decided enough was enough and had an endometrial ablation.
I was so positive that this would be the end of my problems, but sadly it wasn't to be. I had the usual post ablation bleeding but this continued for several weeks before it stopped. I then had intermittent bleeding and brown discharge, until in November I had intense cramping pain and heavy bleeding again. I was advised I need another hysteroscopy and a pelvic ultrasound. The ultrasound showed a thickened lining at the top of my womb and a query polyp - result ablation had failed. The gynaecologist thought another hysteroscopy was a waste of time as the scarring from the ablation would prevent anything being seen and he put me on Norethisterone (progesterone) for 3 months straight, and to then repeat the ultrasound at that point.
The Norethisterone stopped the bleeding straight away and I had two lovely months of no bleeding. But then I started with intense itching all over my body, extreme fatigue, a need to wee every two hours at night (which compounded the fatigue), painful leg cramps and restless leg syndrome and headaches. A blood test showed my liver function was borderline and a repeat three weeks later showed it was abnormal. I was taken off the Norethisterone as it was felt this was the cause of my bad liver function. I am waiting to have a repeat blood test in a week to see if it has now improved.
I came off the Norethisterone on Thursday. On Sunday I had brownish discharge and in the early hours of Monday I had severe pelvic pain and started bleeding properly. The pain was unbearable, no pain meds would touch it and I was on the point of collapse and going to A&E when I had a massive bleed and the pain eased. A few hours later I passed the largest "clot" I have ever seen, which was about the size of my fist and looked more like tissue than blood (sorry if TMI!). The bleeding has slowed since then but I still have the pain, although not as bad.
Has anyone else experienced this when coming off long term Norethisterone and if so, does it settle down?
I think I am now going to ask for a hysterectomy as I need my life back and there's nothing else I can take that will work.
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