Extending zodalex treatment and symptoms?

[Chester28]

Hi all,

I wondered if anyone could help or advice.

I have been on zodalex and hrt for 5 months and will be my six month injection next month. Zodalex has helped with my pain a lot and have been able to do things again, however I’ve started to notice that my old symptoms have been creeping in again and been getting other symptoms this month too. My body feels achy all over, brain fog, struggle with concentration and feeling fatigue.

I am supposed to be having my last injection next month, however my Dr said that they can review it and see if they could extend it until I have my lap surgery. I am still on the waiting list and dunno when my surgery will be, so I am 50/50 with it all as it’s helped so much with the pain of my endo, but now I am getting these symptoms I am worried that they could get worse if they extend me being on the injections.

Has anyone experienced this and have any advice on what I should do?

Thank you ❤️

[claudia_91 Moderator Endometriosis UK]

Hi Chester28

Lovely to hear from you. Sorry to hear that these symptoms have returned for you. The fatigue and brain fog is really tough to deal with, I can really empathise as I've experienced this myself. I'm afraid I don't have experience of Zoladex and cannot comment on that but others may be able to.

I don't know if you're aware, but Endometriosis UK run support groups across the country for people with endo to connect with each other and share stories and advice. The groups are run by volunteers who have endo too. You can find out more about them here: endometriosis-uk.org/find-a...

Ultimately, it would be best to discuss the symptoms and treatment plan with your specialist when you can. Hope things improve for you!

Take care,

Claudia

[Chester28 in reply to claudia_91]

Hi Claudia,

Thank you for your reply ❤️.

Aww thank you and sorry to hear you’ve experienced it too, it is not nice to have and to go through ❤️.

Thank you for your advice I have managed to join a local community on fb now and they have been very supportive.

Thank you for your help ❤️

[CupcakeL]

Hi,I’m at a simular point but with decapeptyl rather than zoladex, my consultant has just left it that I’m on the treatment until lap but I am currently getting the brain fog, fatigue and loss of concentration too, I’m due my 8th injection next week.

I’m considering trying the mini pill until surgery as now I’m not in pain it might be more help 🤔 it’s really hard to decide what to do isn’t it.

My only advise would be don’t just stop the injections, I missed one a couple of months ago due to being ill and after a couple of weeks all my old pain and symptoms were back and it hit me like a ton of bricks.

xx

[Girlfriday1970 in reply to CupcakeL]

If it's any consolation I was on it for almost 3 years while waiting for my surgery due to COVID. Keep going x

[Chester28 in reply to Girlfriday1970]

Hi thank you for your reply ❤️.

Ahh thats good to know you can be on it for a long time. Was you taking hrt with it as well?

So sorry to hear you’ve had to wait three years for surgery 😢. I hope you’re surgery went well ❤️.

Thank you for your advice I will definitely keep going with it ❤️

[Chester28 in reply to CupcakeL]

Hi thank you for your reply ❤️.

Ah it is horrible isn’t it I mean don’t get me wrong I am not in so much as I was before, but it does sometimes feel it’s one thing after another and just my body feel exhausted all the time, even if I do a days work I am shattered now 🙈.

It is good to know that other people do experience these symptoms with the injections so it does sound like a common thing to get. Yeah it is so hard to decide on what to do, as you are scared of making that wrong choice and you don’t want to go back to having that pain again.

I definitely don’t want to go on any pills as I’ve not had great experiences with them, so think I am just going to stick with the injections and see how the months go, hopefully it was just a bad month I had with it 🙏❤️.

Aww so sorry you had to go through that, that must of been horrible 😢! I do find when I a due my next injections my old symptoms do slowly creep in again so I can imagine missing an injection is a horrible experience 😢.

I wish you all the best and thank you for your advice and support ❤️❤️ Xxx