Norethesterone : Hello I'm newly diagnosed... - Endometriosis UK

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Norethesterone

Shell1967 profile image
18 Replies

Hello I'm newly diagnosed and only last month I was given norwthesteorne to stop a prolonged heavy period.i took it for ten days and it worked wonders,Is This a normal period period I'm having now 3 days after stopping it or just a withdrawal bleed? I also got told I could stay on this to help my periods and gun told me to start taking it tomorrow and I've read I should take it from day 5-26 of my period which is tomorrow ? Can anyone on this tell me if that is correct please xx

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Shell1967
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Emi-_P_17 profile image
Emi-_P_17

Hi I took Norethisterone prescribed by gynaecologist to stop a 31 day bleed I took it for 21 days and then was told to stop taking to have a bleed. I have severe endometriosis diagnosed by a laparoscopy in October. I started to bleed about 4 days after I stopped taking it quite heavily but it wasn't as painful as usual. I am also taking mini pill Desogestrel however this hasn't stopped me having break through bleeds and I still have pain daily. I had a review with gynaecologist and I have been prescribed  Norethisterone for 3 months without a break to prevent bleeding then he wants me to stop have a bleed then start it again. The idea for me is to try and stop the bleeding as heading down hysterectomy route. I was told to take it constantly but this is because mini pill wasn't a high enough hormone dose for me to stop the bleeding I think. I hope Norethisterone works for you and you find out correct dose for you. 

Shell1967 profile image
Shell1967 in reply to Emi-_P_17

Thank you yes I'm not sure what to do as in same boat as you,I saw gyn on Wednesday he told me to start it again today as have had a weeks break but he didn't tell me how long to take it for.on the leaflet it says for endo take on day 5-26. But am going to my gp tomorrow to make sure this is ok.do you have it deep like me ? An mri showed it in ovary sacro ligaments and bladder I think as lesion was noticed.after you stopped taking it after 21 days how long did you bleed for or was it continuous still? I stopped the tablet last Sunday,started bleeding Wednesday and still am now sunday but I was going to see if it stopped on its own so not sure how long to leave it as have 7-9 day periods anyway any advice ? Thanks so much Michelle xx

Emi-_P_17 profile image
Emi-_P_17 in reply to Shell1967

Hi Michelle I am not sure if I have it deep I haven't had an MRI the gynecolgist after lacroscopy said its severe and extensive and was attached to my bowel and I had an orange sized cyst on left ovary which he didn't manage to completely remove. I also have pain under my right rib which pain consultant and gyne think could b endometreosis related I am having steroid/anathetic injections on Friday to hopefully relieve pain. When I stopped taking Nortistrone I bleed for 6 days it was very clotty and heavy but stopped on its own was like a normal period for me but less painful but I am on the mini pill too so I am not ment to ovulate or bleed although it affects everyone differently. See what your GP recommends tomorrow from looking online some people take Northistrone for 6 months without a break to treat endo but I have only been prescribed for 3 months then to stop for a week to bleed then start it again. Let me know how u get on tomorrow hope it goes well :)

Shell1967 profile image
Shell1967

Yes I will😊I don't mind taking it at all if it helps with endometriosis? How does that happen do you know ? Xx

Emi-_P_17 profile image
Emi-_P_17

Hi I hope you got on ok at G.P. In answer to your question I think by stopping the bleeding it helps prevent further endometreosis developing but I am not sure sorry. I think Northistrone is just a higher dose of hormone similar to that in the mini pill :) 

Shell1967 profile image
Shell1967 in reply to Emi-_P_17

Hi yes both go and gyn rang I'm to take it for 3 weeks and have a week break etc.when are you supposed to stop bleeding as I had my period last wed and it has lightened up but not stopped so started norethestwrone yesterday and still lightly bleeding does it take a few days to stop ? Xx

Emi-_P_17 profile image
Emi-_P_17

Hi I stopped bleeding after about 3 days after starting Northistrone.  I am taking one tablet 3 times per day. I have noticed I  am getting water retention again and sore boobs :( That's good you have a plan now. I hope your bleeding stops soon X 

Shell1967 profile image
Shell1967 in reply to Emi-_P_17

Yes thank you I started it yesterday morning so hopefully will stop soon.do you mind me asking how old you are? I'm 49 xx

Emi-_P_17 profile image
Emi-_P_17 in reply to Shell1967

I am 40 in July. I have 3 children they are 5,9 and 10 luckily I managed to fall pregnant easily although I have always had heavy very painful periods. Was a bit of a shock when diagnosed in October with endometreosis.  My name is Emily by the way :) 

Shell1967 profile image
Shell1967 in reply to Emi-_P_17

Hi Emily it's the same for me I fell quickly with all my 3 and have suffered terribly. All my life with heavy periods but hitting peri has made it worse hence why I'm on norethesterone.how was you Diagnised? Mine was a scan via if heavy bleeding which led to an mri which showed endometriosis in ovary ligaments and bladder.now I know why I wee a lot !! Do you have it on bladder ? Xx

Emi-_P_17 profile image
Emi-_P_17 in reply to Shell1967

I had a laproscopy, ovarian cystectomy and divisions of adhesions and diathermy in October. Consultant said it was wide spread affecting both ovaries and attached to my bowel he didn't mention my bladder though. The cyst was the size of an orange but he didn't manage to get it all out because attached to ovary. I am still learning a lot about the condition and reading posts on this site has really helped me. :) I have found I wee more on Northistrone I think it's a side affect. Oh and I spoke to pharmacist today as I was taking diclaphenic for pain but in northistrone leaflet says not to take anti inflammatory with it. Pharmacist said it just increases water retention so I am going to try not to take it now :( 

Shell1967 profile image
Shell1967 in reply to Emi-_P_17

Hi yes I read that too.i started northesterone Monday morning and bleeding has gone to brown discharge is this normal as last month it just stopped the bleeding and I didn't get brown discharge? I suppose it's good it's slowing down xx

Emi-_P_17 profile image
Emi-_P_17

Hi yes mine did that for the last few days then stopped. Sounds like u are nearing the end at last :)

Shell1967 profile image
Shell1967

I don't think it was a bad period as only had the withdrawel bleed last Wednesday and Thursday and Friday were very very heavy and I mean heavy !!! Beach towel on bed just in case up and down every half hour but it did seem to slow down by Saturday and by Monday very much so a little bleed in morning then just spotting.i really wasn't going to take norethesterone but as I'm away tomorrow I was scared not too.you too? As your period stopped on its own were you too scared not to take it? Xx

Emi-_P_17 profile image
Emi-_P_17

My periods have been so much worse since the laproscopy it felt like labour pains and really heavy and clotty too. I had to put protection on the bed too! When I took the northistrone for the 21 days a few weeks ago my daily pain reduced and I felt much better in myself as I had been bleeding for 31 days constantly despite being on mini pill. When I had the break to bleed it wasn't as heavy or as painful. I feel really positive taking it now and knowing I hopefully will have less pain and no bleeding for 3 months sounds great too! I hope u benefit from taking it too and with u going away the timing is good for u as your discharge should stop soon :) have a lovely break away :) 

Shell1967 profile image
Shell1967

Yea mine was really heavy for two days but fine after so fingers crossed it will do me the world of good too 😊can I please keep in touch with you as were so similar ? Xx

Emi-_P_17 profile image
Emi-_P_17

Hi Michelle course we can keep in touch it's been good messaging you I don't feel as if I am going through this alone. Have a fab break and will look forward to hearing from u soon :) take care X 

Emi-_P_17 profile image
Emi-_P_17

Hi Michelle I was wandering how you are getting on. I am doing ok still getting some pain from my endometreosis but pain has much improved due to taking the Northistrone and it is so nice not to be bleeding for a change! Hope all is well with you? x 

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