New to site - norothisterone/ newly diagn... - Endometriosis UK

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New to site - norothisterone/ newly diagnosed

chilli_button profile image
5 Replies

Hi everyone, I am new to the site as I was only diagnosed with endo

In May 12. Complete shock! Had a lap, hysteriscopy and wound exploration (opened my c section scar by 3"). Was diagnosed with stage 4 endo with adhesions to the back of my womb and bowel. makes sense of all the issues I have had over the years that I have just struggled with thinking it was "normal".

I have been reading some of your posts and sorry to hear what you are all going through and if through what you are going through someone could give me some advise I would be forever grateful. Of course if I feel I can help anyone I will (being newly diagnosed I'm maybe not so helpful)

I have been taking since march 12, 3 x 5mg norothisterone, the doctor under the advise of the gynea has changed this to 1 x 350mcg norothisterone. I started taking these 2 days ago and now I am bleeding (which I haven't done since my lap) and getting the unbearable waves of pain again. Has anyone else ever has the same?

I am due to have the merina coil fitted on 16th and have read some sorties both good and bad. My only other option is a complete hysterectomy with bowel resection, which at this stage my gynea thinks is not right for me.

Normally I can cope with everything, nothing fazes me, but this I just want to hide myself away (I cannot as I work full time and am so very lucky to have a 6.5 year old daughter).

Sorry not really asked questions just waffled but any advise would be great.

Thanks in advance x

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5 Replies
learidd profile image
learidd

I have been on northisterone for a while before having a zoladax injection for 3 months which temporary cuts of your ovaries which worked fantastic but you can only be on it for 6 months I stopped taking the northisterone and had the coil put in last week and so far do good in not taking it I would go back up to the five so that you can have coil put in cos if you are bleeding they won't be able to do it good luck hun and welcome to the site if you ever need to ask any questions the women on here ate really good xx

chilli_button profile image
chilli_button in reply to learidd

Thank you for your reply learidd. Yes I think I will stop the 350mcg norothisterone for now and start with the 5mg one again until I have had the coil, as my consultant wants me to have the coil and take the norothisterone together. xx

learidd profile image
learidd

sounds like a good plan im on the pill at the moment but finish that today so think that this is the thing that has stopped me bleeding all this time so bit nervous about coming off it i hope itgoes well the coil and make sure you book the first couple of days off and keep it completly fre as it was much better for me to know that i had them days to just chill and ride out the pain whilst reading mags and watching cheesy films lol

chilli_button profile image
chilli_button in reply to learidd

I hope coming off the pill doesn't effect you too much x thanks for the advice, I have booked Monday and Tuesday off, hoping that will be enough, hubby is going to work from home too so he can do the running around for me.

learidd profile image
learidd

thats good its not necessary but well worth it as it is very sore for a while good luck xx

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