Norethisterone

[Milton1]

Has anyone used this to help with endo I've posted previously about my history with endo I had surgery 3 months ago to excision and remove a number of endometrial nodules was told should go 3 years pain free well it's been 3 months and bang the pains back ! They've now put me on this 3x daily at 5mg for 6 months but pain is still there are these actually any good ????

[Hidden]

I was given it earlier this year - managed 5 weeks of it then had a pain flare up and was put on cerazette instead. My BSGE consultant said it's not really a great treatment as it tends to cause depression. But I am very much of the mind that everything is worth a shot.

[Milton1 in reply to Hidden]

Yeah I WAs quite surprised as I have post traumatic stress disorder how do you get on with new meds they put you on ?

[Hidden in reply to Milton1]

I have to be honest, I am not finding the cerazette very pleasant. My pain levels are down enough that I can manage my pain at home but I am having a lot of problems with bleeding (4 very heavy periods in 13 weeks plus spotting inbetween). It's also given me bad skin and bloating and I am gaining weight at an alarming rate. I'm also having night sweats. The hosp have told me to expect it to take up to 6 months for the bleeding to settle but have said that it might not given that I've bled on absolutely everything they've tried. I am due for another lap in a couple of weeks when they are going to take me off the cerazette and give me zoladex instead so I am persisting with it but I don't think I could take it long term.

[Hidden in reply to Hidden]

I've been on Norethindrone for 5 months and like you the first 5 weeks were bliss, I didn't have to take any pills and then I was hit with pain. I went to my gyno and she didn't give me another option and I saw another one and he told me that I shouldn't be on pain if I'm not having periods and if I'm on it.

I took 2 by accident in September and I somehow had a painfree day.

Can I ask if Cerazette was harder to go on side effect wise?

I just want to say thank you posting this comment! I thought I was going crazy since I was still in pain Xx

[Hidden in reply to Hidden]

I am finding the side effects of the cerazette harder but when I was put on the norethisterone I was also on decapeptyl. Now I've been off the decapeptyl a while the hosp have said that my oestrogen levels are back up which is why my daily pain is a lot worse. Generally the cerazette is making me feel pretty crappy :/ but it's a short term fix to try and keep my pain at a level I can manage at home while I wait for surgery.

[Yalda]

Hi, I have severe endometriosis and adenomyosis. I had 3 surgeries. i was prescribed Norethisterone but I didn't find it helpful because I still had pain. However it helped my bleeding.

I found Zoledax more helpful.

[Milton1]

To be honest I don't know why they've put me on it I don't have periods and it certainly don't help pain wise docs drive me nuts !! I'm so sorry to hear that I hope you feel bit more pain free soon

[Hidden]

I've been on 5mg of it for 5 months, the first month was amazing, I wasn't taking painkillers or anything and then I got a kidney infection and it all went downhill from there since I'm now in pain everyday.

However I once took 2 pills (by accident) and I was pain free it was amazing.

[Milton1 in reply to Hidden]

Lol the end bit made me chuckle I've only been on it a week so will keep going thanks