Perimenopause Bleeding & Norethisterone

Women's health
1

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.

Thanks

 

2

Please go see an ob/gyn.  Have you had a biopsy for uterine cancer? I think it might be a necessary precaution. xx  

3

Hi Lynda

Thanks for your reply. I am under an ob/gyn and have had three biopsies since 2015, all of which came back ok apart from the fact I have simple hyperplasia. xx

4

Hi honey, dont panic I have passed clots that looked like a pound of liver! I once passed what is called a cast and I'm not kidding it looked like a foetus. It is not uncommon to have these awful bleeds especially after coming off norethisterone. I'm sure if anyone had thought this was serious you would have been seen urgently by now. I have two fibroids which they have left alone. I'm on hrt now together with a mass of vitamins to help me through. I have to stop my hrt for 6 weeks due to a special blood test. Dont know how I'm gonna cope with that. Dont rest on your laurels if you are concerned keep on at the drs until they do something for you that actually works. I wish you well. XXX

5

Thank you so much Tina, that's a real comfort. I wish you well too with all that you're going through xxx

 

6

Well, I think a hysterectomy would be a good thing, considering all you're going through. Hyperplasia can change at any time.  You don't want to mess with uterine cancer!  I know.  Best of luck to you! xx

7

Thank you hun, at least we have eachother! XXX

8

Thanks Lynda. After spending a day in A&E yesterday with even the strongest pain meds not touching the pain, I am now going to be referred for a hysterectomy. I just hope it doesnt take too long. I wish you all the best to you to xx

9

Please do let me know how you get on!  I am recovering from surgery to remove a tumor and some lymph nodes after 6 months of chemo.  Expect to be referred to a radiologist to mop up any remaining cancer cells.  That's why you need to have that hysterectomy--so that doesn't happen to you! xx

10

Hi ladies, how did you get on with this?

I was put on norethisterone after the heaviest bleed ever with clots the size of my fist, very similar to what the OP describes. I am 45 and started getting very heavy although painless periods last year with a few really scary episodes when the bleeding just wouldn't stop. Two hysteroscopies failed to remove a small fibroid because of where it was but the 2 biopsies came back clear so they said it was hormonal and put me on the progesterone only pill Cerazette. For me this was the pill from hell as I bled for the whole 3.5 months I was on it. This culminated in my having to leave work at 10am due to the worst flooding ever which wouldn't stop. I am also a teacher so you can imagine how horrified I was but fortunately I made it to the loo in time. Ended up in an ambulance and A&E and was then admitted to a ward. They gave me norethisterone which stopped the bleeding within hours and I haven't bled for 10 days now although still wearing a pad, just in case!

I am going to take it for one more week and then come off and see what happens. Also been referred to a specialist but no idea how long I'd have to wait. Horrid stuff. Just want a hysterectomy as I can't put up with it any longer. I used to be very fit and healthy, running 3 times a week and going to the gym up until last year. Now not only I can't exercise but it's also preventing me from doing the job I love which is really depressing