Nerve pain following Full hysterectomy with stage 4 Endo removal

[Pollyanne515]

Hello all,I wonder if anyone has some positive result from using nortriptyline for nerve pain post hysterectomy and Endo removal please?I am currently approaching 8 weeks post op, and still not very mobile, in a lot of pain and hardly sleeping. Surgeon recommended Amitriptyline 3 weeks ago, but it hasn't suited me in the past so I opted to give my body more time, to see how much it could do on its own. GP has suggested nortriptyline as I might tolerate it better, and physio thinks its worth a try to see if it can offer relief.

Obviously, I am anxious and would really benefit from reading any positive experiences. Many thanks for reading my post x

[girli1111]

Amitriptyline left me drowsy and I was switched to nortriptyline, it’s been much better for me. I have it for another condition. my stage 4 endo problems were solved after excision surgery and removal of my ovaries. I’m sorry you’re struggling right now.

[Pollyanne515 in reply to girli1111]

Thank you for replying, how long after your excision surgery did you start feeling better or pain improved?

[girli1111 in reply to Pollyanne515]

Within 3 weeks I think (it was back in 2017 though, so it’s been a while! I was not on the nortriptyline then though.

[Jennfer]

hi there, I was recently referred to a pain specialist - an anaesthetist. I would recommend asking for a referral rather than just taking medication, as they’ll give you all the available options to make the best choice for you.

[BloomingMarvellous]

Positive use here and I only take 5mg after the 10 lowest dose proved too sleep/fog making. Like you Amitriptyline was a no go . Life changing. Worth a trial but I know it doesn't suit everyone . My GP put me in it after pain team had frigging failed me and after an 18 month wait to speak to them ! So it's worth an ask and see trial ... GP put it alongside the Curable App . Great combo . Works on the nerve pathway which is often the main source of Endo pain.

[LME5]

I'm sorry you're suffering post hysterectomy. They should really be offering women physiotherapy post surgery. I keep reading about women who experience leg pain post-hysterectomy. Is that also the case for you?

[Pollyanne515 in reply to LME5]

Hi there, I am in a lot of pain still. Am seeing a specialist physio, who also agrees at the nerve pain diagnosis.To be honest, I just feel that I want to push for a scan, not that I expect there to be a specific problem, but I just need to be sure. Have suffered with Endometriosis pain for si many years, that this surgery was my hope to trying to live a normal life. And currently I'm afraid that's not going to happen 🤦😔

[LME5 in reply to Pollyanne515]

So many cases of nerve pain post-op. You're right to push for a scan, for thorough investigation. I understand why you feel so disheartened. Surgery is sold as a fix all, but it can come with it's own complications. One positive is that the physio confirms it's nerve pain. I imagine they may have a treatment plan for you? Plus a scan will also help with further insights.