Zoladex - regular symptoms

[Siberianed]

I've just had my third Zoladex injection (four-weekly course) two days ago and I'm feeling absolutely awful. This seems to be a regular occurrence now but I have currently got what feels like a terrible cold, complete with bone/joint aches and headaches. I am currently on Tibolone as well, and have been taken this for over two months.

I don't want to unnecessarily bother my GP about it but I also don't want to feel like this continuously. I'm on a waiting list as I had a laparoscopic surgery in May 2024 where they found and excised a large amount of endometriosis but were unable to remove an amount in my Pouch of Douglas as it was too advanced for that surgery. As such, I have been referred to another consultant in an Endo Centre in order to have a full hysterectomy (which is what I've been asking for over the past five years) and the remaining endo excised. I'm still on that waiting list and when I chased this week, I was told I'd likely hear something around July.

Does anyone else get these regular symptoms from Zoladex? Am I best off just riding it out until I finally see the new consultant in roughly four months time?

[fearsmarrow]

hi - i got on really well with monthly zolodex after the first 2 months but with hrt gel and Utrogestan for about 6 months then i started to feel like you are for about 1.5 weeks after, and 4 days before so it felt pointless.

I had a 3 month one in feb and i felt bad for about a week but honestly the last 5 weeks are the best i have felt in about 8 years, it's given me some hope the hysterectomy might actually help, i was doubting before.

Maybe try a longer dose or potentially look at hrt change? (Appreciate the hrt might me making it worse). Might be worth a try?

I hope you get sorted, it's so miserable x

[Chartolfrey]

Hi ive been on zoledex 13 months while waiting for my hysterectomy.The 1st 3 months was awful but since then its so much better.

Ive had problems with hrt tiberlone so now im on the combi patches.

Still get some flares bur thats coz mine is so severe and my wait for surgery is 12-18 months.

I should get mine by the summer.

Dont feel like you dont wanna bug the doctor if your unwell or in pain just do it thats what i did

[Sunset-lady]

Could you swap to normal HRT as they sound like menopause symptoms? I was on it 14 months and towards the end it just stopped working. I had a hysterectomy last Saturday and I feel so much better already. If you feel mentally good 👍 on zoladex then you will hopefully feel good having a hysterectomy. My consultant says women who feel good on these drugs have probably suffered with PMDD most of their lives and I think i did without knowing it. Good luck xxx

[thebird1 in reply to Sunset-lady]

Hi Sunset Lady,I'm two weeks post hysterectomy/BSO. Just wondered how you're doing. I'm nervous that I still have endometriosis pain in my bladder ( which they've not looked at yet!). I'm trying to think positively and think it's only been two weeks so it's likely still aches and pains associated with surgery x

It feels so much better when I sit down now mind as I had recto-vaginal endo ( pouch of douglas)!

Can I ask what HRT you're on if any. I know I've asked the question before and there was a mixed response as to whether we should/shouldn't be on HRT post surgery.

Wishing you a speedy recovery.

[Sunset-lady in reply to thebird1]

There is very little risk of blood clots with transdermal HRT. My surgeon agreed with me. I took blood thinning injections for 5 days and now I'm back on one pump of estrogen gel and 2 utrogestan tablets daily. This worked for me and even on zoladex this combo still allowed everything to shrink so I know I'm not "growing" my endometriosis. I feel really good (rectovaginal here too). My bowels are still grumbling and my bladder hasn't totally settled but I had robotic surgery and the cuts are tiny. Mentally, I feel really good. Xxx

[thebird1 in reply to Sunset-lady]

That's great news x So pleased for you. I'm wondering if my bladder aches are possibly down to pelvic floor weakness too as everything was all stuck. Mentally I do feel better too. They've given me a combi patch 50/170 mcg ( 50 being estrogen). Because of bladder niggles I took it off and I've gone back to a 25mcg estrogen patch and X2 Utrogestan. Unfortunately, whilst on Zoladex etc I felt the HRT was flaring it up still so came off it. I was only on it a month before surgery. I guess I need to stop chopping and changing and go with it for a while. That's why I've asked the question re amounts although I know we're all different!All the very best for your recovery x

[Sunset-lady in reply to thebird1]

I think many women with endo cannot tolerate progestin. Whereas utrogestan seems better because it's natural. When I flare I add a really small amount of Ona's progesterone cream but I'm hoping I won't need that moving forward without ovaries x look after yourself x

[Siberianed]

Thanks everyone, really interesting to hear your experiences. I've messaged my GP surgery to see if I can switch to the 3-monthly Zoladex while I wait for the next gynae appointment. Aside from the first week post implant and few days before the next one is due, I'm actually feeling so much better. A lot of my symptoms have improved, and I've seen a huge turnaround with my PMDD.

I thought I might have a recall for a medication review with my GP at some point but it seems that's not something that's on the cards so I might have to push for that!

[thebird1]

I was on Decapeptyl for 8 months and then Zoladex for a month. I ended coming off both as the pain didn't feel any better....or so I thought! I came off them and the pain was worse. My back ache, hip pain and generalised pain was all worse so think it had been doing something. I'm now 2 weeks post hysterectomy x