Zoladex crippling back/hip pain

[Bookworm3371]

Anyone had this on Zoladex? I’m on month 2, with add back HRT and I can’t take it. I’ve managed all the crappy side effects so far but the past few days I’m in agony, my hip and back are in so much pain. I just collapsed walking to the bathroom, and couldn’t get up from the floor. I’m crying in pain, worse than the stupid endo.

I’m on this for 6 months to get on the hysterectomy list, I’m starting to think it’s not worth it, I’d take the endo pain over this any day. My worry is without the hysterectomy I risk my bowel getting worse, I’ve been told I have severe endo, ovaries and uterus fused, possibly attached to bowel too. Can any one relate? Apologies if this is rambling, I’m in so much pain and don’t know what to do

[x_emily_x]

I dont know about the zoladex but if you are experiencing severe side effects like this you should tell your doctor, you shouldn't be suffering like this. I have endo and it traps nerves and cause muscular skeletal spasms for me, meaning muscles seize up, usually in my lower back and essentially disables me. I've been in positions where I haven't been able to get up off the floor and any attempt to move has caused more spasm and more pain.

Its scary and lonely to go through.

I have asked for advice about it before and there wasn't much help. The doctor told me if that happens, just call an ambulance and stay at the hospital for them to take care of me, but no one wants to go so far or have a hospital as a hotel. Especially if you're in America.

The only advice I can give is to try to reduce the triggers as much as possible and prepare a back up in case it happens.

A friend who could help you go to the toilet if you need to, though its not an option for everyone. Pain meds, accessibility measures to help you move if possible, kitting out next to your bed if you literally can't move one day.

Its not easy and some of these may not even be an option or work or make it better but maybe the slightest bit of control in these moments will help mentally.

I know what its like and there has never felt like a solution in the moment to me.

Its up to you what you do but if it was me in this situation I would argue with my doc to get meds that don't cripple me.

I hope things get better for you 🙏

[Bookworm3371 in reply to x_emily_x]

I really appreciate your reply, genuinely, thank you x

[x_emily_x in reply to Bookworm3371]

Its okay, I only know about this one aspect unfortunately. I really hope you find the answers you need and get the treatment thats best for you 💖

[Womble84]

Hey, I've been on prostap for 6 months and just started tibilone. The prostap was pretty bad, mainly affecting my concentration and emotions, but it did help with the endo pain. Now with the tibilone added in I feel so ill! Like you I can't walk very far due to the pain - not only has my endo pain come back I have sciatic pain now too and I am so uncomfortable. My eyesight is so blurry too. It can't be right but my GP knows nothing about endo so it's not worth going to them. Don't see the gyne again until January but I've no idea how I'm going to cope until then. Seriously considering stopping the prostap and the tibilone. It's not worth this hell. So I don't have anything good to add unfortunately but just wanted you to know you're not alone!