Norethisterone

[Nataliex]

Hi, I had fairly major surgery 7 weeks ago - excision of endo from uterosacral ligaments, ovaries, behind uterus and removal of part of my bladder where the endo had grown through. They got all the endo out and I'm mostly healed now but still left with adenomyosis and the consultant is now suggesting I take half a tablet of Norethisterone per day to help with the remaining symptoms and stop the endo coming back. Does anyone have any experience of Norethisterone?

Hope every one is feeling OK today.

Thanks!

Nat

Xx

[AngelaW1234]

Hi nataliex, I’m really sorry I don’t have experience of norethisterone (except I used to take it to stop menstrual flooding- it was a true lifesaver) but I wondered if I could ask about the uterosacral ligaments? At my lap 3 weeks ago the surgeon found severe ‘deep rooted’ endo on my uterosacral ligaments but he told me he couldn’t remove it during a lap and had cauterised it instead to help prevent further growth. Did you have to have a laparotomy to remove this and did you experience really severe pain beforehand? Im very lucky to have minimal pain and my surgeon said that further surgery to remove it would depend on my pain. Sorry to jump on this but I haven’t seen anyone else with experience of the uterosacral ligaments. Thanks ever so much xx

[Nataliex in reply to AngelaW1234]

Hi Angela, my op was keyhole but was robot assisted with 7 different entry points. The main issue for me was the bladder though as the endo on my uterosacral ligaments wasn't deep rooted like yours. It was a 6 hour operation with two different surgeons and the robot so it was fairly extensive but I feel hugely better already. I had my surgery at the Cambridge University hospital Addenbrookes as that was the only place that had the right tech (robot etc). Apparently they usually only do that type of op on cancer patients but it may be an option for you as much more can be done through keyhole with the robot than without. Where in the country are you? I was in severe pain before the op and it was a really horrible experience and recovery so although everyone is different I would only consider it if the pain is really severe and impacting your life.

Xx