Coming off GNRH analogues

[Awwy]

Hi,

I have been on prostrap and then zoladex for the past 2.5 years.

This was to help with pain which it did initially and i have been waiting for so long for an op. One year ago my consultant said persevere bit longer.

Its only licensed for a 6 months and I'm concerned that I'm doing more damage. My weight has gone up by 4 stone over 2 years.

That is one of the reasons I want to come off. Even though my bone density scan was ok within range im still concerned as my bones ache. My mobility is decreasing and I just feel really unwell.

No one seems to be bothered about my symptoms and keep saying everything is 'within range.'

Will I be classed as refusing treatment?

Im changing to a new consultant and have an appointment next week. I am sure he is going to say reduce weight. In a previous post i have talked about my struggle. 1500 calories and not lost a pound over 6 weeks.

☹😢😭

Any advice on what to expect appreciated.

Thank you kindly.

[CryBaby91]

Hi Awwy

First, it is your body and YOU decide what treatments you have in your system. Not the doctor. If you feel they are having a knock on effect on you then you are absolutely within your rights to stop treatment. I did! Yes it reduced my pain, so I was happy about that. But the effects it had on me in other areas were not something I could manage, and the worries I had long term with bone density and dementia risk were also not worth it in my book. So, if you feel that you've had enough and reached the end of your rope then you can say no. Yes it is "refusing treatment" but you're not doing anything wrong AT ALL. You have that right as a patient to say no this isn't for me anymore. If they've made you feel like you can't say no then that is really out of line, my nurse constantly reminded me that I could stop at any time. It was one reason that I persisted for so long, because it was my choice. Please please talk to your nurse and explain all this to them, you should be allowed to stop and ask for a different course of action. I've been referred to pain clinic now to try non hormonal therapy, that might be worth enquiring about?

Xxx

[Awwy in reply to CryBaby91]

Hi CryBaby91

I was referred to pain clinic in August last year and have got an appointment this year in April finally.

Brain fog, sleep issues etc... just feel like I've swapped being in severe pain for lesser symptoms.

They keep me off pain killers, but I've become less mobile now not sure if that's totally to do with them as I have lupus aswell.

Thank you for your advice. 💜

[CryBaby91 in reply to Awwy]

Gosh lupus too! I had doctors testing me and poking me to see if it was lupus for years but they could never say for definite yes or no. Small world haha sending spoons your way!

I totally get that, you really are swapping pain for other symptoms lol it feels very unfair sometimes! I hate the limited treatment options we have it's like we have to have contraception/hormones or nothing! Whack us on painkillers and tell us to diet and do exercise lol. My doctor probably doesn't believe me that I already do yoga lol.

Have you tried CBD oil at all? It can be helpful for reducing inflammation. If you're also having nerve pain it might be worth chatting to the pain clinic about tweaking your meds and seeing if there's a better option. I've heard good things about swimming too, if that's an option for you? Xxx

[Awwy in reply to CryBaby91]

Hi,

I know lesser of two evils 😈.

I know they dont believe you when you say you work out I just had a session with PT now. I would love to go swimming but the pools are just packed out at times I can go. I get about 20 mins if I'm lucky and they are 1 hour slots. Im really embarrassed now because of my size too so want to do ladies only but again the timings are when im at work.

Not tried CBD oil. Will try that once I have got the rest out of my body. I want to know what my normal is now.

💜

[635703]

do you have HRT with your prostrap?

My Consultant said it’s fine to go over 6 months with HRT as this adds back the missing hormones.

[Awwy in reply to 635703]

Hi 635703

Yes I have Tibilone.

Because im struggling with my body in general. I just want to come off everything and try and establish a baseline of where I am agree 2.5 years. X

[635703 in reply to Awwy]

aww lovely ☺️ I so understand and have exactly the same challenge. Today I am meal prepping!

So thankful I have no pain. No period.