Norethisterone long term

[Menora]

I have been told I must take norethisterone for 6 months. I must stop bleeding so much as I have become so anaemic (long story - fibroids). It’s the endometriosis level dose of 3 tablets a day.

The problem that is causing confusion is when to start to take it. GP is even not quite sure. I recall consultant saying start when you like and just take pack after pack but she did not write this in the letter and the guidelines in the leaflet and BNF say you need to start on a particular day of your cycle. My period has just ended so this means waiting 3 more weeks to start and bleeding again.

Has anyone had advice they can start any point of your cycle?

I was prescribed this at this same dosage for constant heavy bleeding and was advised to start taking it immediately. Northisterone is all very well and good but it will only treat the symptoms and not at all address the underlying cause. I found that a break in it started the bleeding again (I finished my tablets a few days before I was scheduled to have ablation surgery).

What is the consultant proposing to do re the fibroids which is likely to be the root cause here of your bleeding?. Will this person perform a myomectomy?.

Thanks for replying - I have started them immediately!

In 2015 I had a Mirena put in for heavy periods. In 2017 I started to bleed really heavily and haemorrhaged and the Mirena fell out. A scan showed fibroids pushing into my bowel. I had an ablation after that. They were smaller then and just in the uterine lining.

4 weeks after the ablation I had a fairly large period so I knew straight away it didn’t work. I had another Mirena put in which worked well but suddenly after a year, the Mirena expelled in another haemorrhage and a scan showed the fibroids were now even larger and in the muscle walls.

The consultant I saw in Oct 2019 said to me that removing intra muscular fibroids is really complex and risky. She said she didn’t really want to operate at all due to the risk of blood loss during an op and to try all the medication options first (norethisterone or zoladex false menopause for 1 year as a last resort)

I went away and decided not to take the norethisterone as it’s another hormone but this may have been a mistake! Periods are regular every 30 days, 8 days of bleeding with 4 or 5 heavy enough to need a tena pad.

From Oct 2019 last bloods and now, my hb has dropped to 78. IMO the bleeding has been no worse than it was before anyway in fact now at least it’s regular. During the Mirena loss times I lost a hell of a lot more blood but this may be a cumulative effect? Sustained blood loss over time? Red blood cells are ‘small’ so GP scared the crap out of me asking about bowel cancer red flags

I have a ferritin of 2 now. I am feeling pretty depressed by all this

I'm sorry I can't add anything further than to say I would ask for a new consultant. It is not acceptable to treat the symptom but not the problem. You cannot live like this OP, I'm sorry you're going through this. X