Zoladex=Scared!!!! Advice needed!!!! ?? - Endometriosis UK

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Zoladex=Scared!!!! Advice needed!!!! ??

petlamb19 profile image
10 Replies

Hi ladies, I'm meant to be having my first zoladex injection on Wednesday. I'm really scared about having it done due to all the bad symtoms I've read about on line!!! Really thinking about not having it done and asking consultant to just go ahead with total hysterectomy.

So confused and really don't know what to do!??

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petlamb19
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10 Replies
Dusty22 profile image
Dusty22

Hey.

Sorry to hear you're so scared. I was too when I got my first zoladex injection, I read all the opinions online and totally freaked myself out!

Everyone is different and will react differently to treatments. I didn't like the side effects with zoladex, but they were nothing to be scared of. Pain wise they made such a huge difference and I was pretty much pain free for the duration. Obviously the decision is down to you, but try to keep in mind that the zoladex injections effects are not permanent and so if you try them for 3 months and don't like them, you can stop getting them, that is what I would recommend before asking for the hysterectomy.

If you have any more questions, please just ask and I'll help as much as I can.

Hope you are ok. Sending big hugs.

Emily xxx

petlamb19 profile image
petlamb19

Emily thank u for your positve reply it really is lovely to read your kind words.

Did you have hrt when u had the zoladex? I'm struggling to understand why hrt is given if it can make endo grow!! My consultant wants me to do 3mths then I meet with him to decide on weather to have total hysterectomy. He thinks that my quality of life will b much better after the surgery. It's so hard to make a big decision like that in so few months. X

Dusty22 profile image
Dusty22

Yeah, I started taking livial after the 2nd injection. They gave me that specific hrt because it works slightly differently than other ones apparently. I'm not sure about all the technical science-type stuff, but I think it was the case that livial contains a chemical that mimics hormones rather than containing actual hormones that will make endo worse. Confused? Me too! I did sit and cross examine my doctor until I was assured that the livial was a smart move though and perhaps you would benefit from doing the same...

I don't know what you've tried so far for your endo, but my gynae doctor no longer gives zoladex, they give decapeptyl injections, which is really similar, but apparently her patients prefer it and report less side effects.

Hope this helps, let me know if you want to ask anything else, I'm obviously not an expert, but I know how much it helps to have someone who has been in a similar position to ask things that the doctor can't answer if they've not experienced it.

Sorry for the EPIC reply! :)

Xxx

Hello,

I had my first Zoladex injection 2 weeks ago and am completely fine with no side affects at all that I've noticed (yet, I suppose it is early days), so try not too worry. I would think it was worth trying before going for a hysterectomy -although obviously I don't know what your personal circumstances are. Also bear in mind that most people are prompted to write online when things don't necessarily go well or there are problems. They say on average ppl tell 10 ppl about a bad experience they have but only 1 person about a good experience - so for every bad review of Zoladex there are probably 10 good ones that ppl haven't written about because they're fine so don't feel the need to reach out. (That is what I say to myself when getting freaked out my reading scary things online anyway!).

Good luck with it all. xx

Pands profile image
Pands

HI, I can completely understand your worries! I had a lap and excision surgery in Oct 2011 and as I came round from the lap I was told by the surgeon that he recommended I had a course of zoladex for maximum benefit after the surgery. This wasn't something I knew anything about or had heard of (at that time as I was new to the whole endo thing) and I had a couple of days to make a decision and so I really didn't have much time to talk to anyone medical, just some half-hearted online research as I was recovering from surgery and felt grim.

Anyway I did the 6 months and it really helped my pain and I had no periods after the first one. However...side effects - there were a few but not as many as I read about or worried about. I did get a terrible terrible headache after the first one (dr said it was probably migraine) but that didn't happen again. Lost weight (and I am slight to begin with) but think that was general lack of moisture in my body, I felt very scrawny. Some hot flushes etc, I also had a *ahem* short temper with a lot of 'RAAAAHHHH-ing' at people, mainly family. Towards the end of the 6 months I did feel rough and was pleased to come to the end of the course. I was given a livial prescription but seemed to react quickly to it and only took it for a few days over the entire 6 months as it made me feel ill and bloated and sick. Once I stopped the livial I felt less rough so I just stuck it out without the HRT. My dr didn't seem at all shocked that I didn't get on with the livial- she just said to stop taking it.

I am now 8 months on from the end of the zoladex treatment and my last few periods have been better than they have been for years. For me it was worth it but I wouldn't truthfully be happy to have to take it again at any time soon. My consultant said that as I was on a monthly injection if I really felt that the side effects were too much that I could simply just not continue with the course and in some ways that made it better - as I always felt I could just stop each month if I felt I wanted to. I just got through a month at a time.

Good luck.

Jojo23 profile image
Jojo23

Hi.! I Completley understand what you are saying as I was in the same boat as you last month! I stayed up most of the night before reading side effects on the web and Completley freeked out and decided I wasn't going to do it. Then a couple of lovely ladies on here said it had been really positive so I decided to go ahead. I'm really glad I did as the only side effect I have had so far is a couple of headaches. Please do give it a go as I'm only 3 weeks into my injections and I feel better already. Am due my second injection 4 th jan and then one more after that before I go back to the consultant . Anything is worth a go to get out of pain I also got told to take sage tablets for hot flushes and haven't had any so far, let me know how you go but it's never as bad as you think xxxxx jo

cupcakegirl profile image
cupcakegirl

Please don't rush into a hyst as I know many ladies who still have problems with endo after a total hyst and it's much harder to treat then.

I spent two years on zoladex without HRT - the main side effects I had were weight loss and hot flushes but I happily put up with them because it was the best I've felt in many years. The hot flushes are unpleasant but nothing compared to endo symptoms. I stayed on the zoladex way too long and now have ongoing hormonal problems but you should be fine with a 6 month course. You can always stop, so id say try it and see how it goes before a more drastic option.

petlamb19 profile image
petlamb19

Anna, panda, cupcake, and Emily,

Thanks so much for your advice. I feel confident about giving the injection a go and hope that I get a taste of pain free living for a bit!!!

Thanks again

Xxxxx

leslog31 profile image
leslog31

I notice women only are responding to answers on zoladex please note for men with prostatic cancer it can work for many years i have advanced, and it worked for at least 5 years until i then had radiotherapy also, and now 11 years am stilll receiving zoladex with added zytiga eg abiraterone i can say it works longer than zytiga there are effects with hot sweats but better than having chemotherapy with many more side effects

Impatient profile image
Impatient in reply toleslog31

Women only are responding -because this forum is for endometriosis- which men do not suffer from.

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