Zoladex!: Never posted on here before...but... - Endometriosis UK

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Zoladex!

livvyjustine profile image
19 Replies

Never posted on here before...but, I had my first Zoladex injection on Tuesday, all went well. However Thursday I started to feel some pain, but Friday, wow the worst pain I had been in for a while. I’ve been unable to eat or drink since Friday, (it’s now Sunday night) been vomiting multiple times a day etc. Just want to know whether anyone else felt like Zoladex increased their symptoms? And how long it roughly takes to subside?

Thanks!!!

( I have stage 4 endometriosis)

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livvyjustine
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19 Replies
ladybird10 profile image
ladybird10

Hi there I had similar problems to you. I had my first zoladex injection in May last year I have stage 4 Endo too. It wasn’t explained that it gets worse before it gets better (I had to do lots of googling) The first month I felt worse than I ever felt I was in agony and had bleeding I was just told about menopausal symptoms.After that though I was more or less pain free I get slight twinges just before the injection is due again but that’s it. I’ve had my last injection now as I have surgery in a couple of weeks. I’m sorry you’re in a bad way now but hopefully you will feel better soon you’ve just got to get through this bit. X

livvyjustine profile image
livvyjustine in reply to ladybird10

Thank you so much, this helps a lot, at least I know that it’s normal now. Same, I was only told about the menopausal symptoms and to take the HRT tablets if they started

Jadeb1234567 profile image
Jadeb1234567 in reply to ladybird10

Hello, A personal question but are you planning on having children or had children?

I have stage 4 endo and have excision surgery in 3 months and will be on 3 months of zoladex but I want to have children next year ideally and I turn 30 in a month. I am just curious if anyone knows if it is normal to have zoladex then surgery then try to conceive?

Thanks,

Jade

Afrohair profile image
Afrohair in reply to Jadeb1234567

I know this is not directed to me but thought I would answer as I wanted to know recently!I have read on here people saying they have gone into early menopause with this jab and also periods took a while to return I’m planning on another baby and was offered this goodness knows why when you can be a risk to early menopause some people have tablets to induce their period again although sometimes people are ok with it

SKOLIVE profile image
SKOLIVE

Hi I’ve just finished my Zoladex course and I’m also a stage 4, I found a few different changes while on this:

- I didn’t have hrt due to a history of migraines.

I must admit I was anxious starting it as I’d heard mixed reviews. I felt unwell the first few days after the injection but after Soon after the daily pains and nausea which troubled me daily stopped. They say it takes 4 weeks to kick in but mine seemed to work sooner. I found my first 3 months were incredible I hadn’t felt so good in years! Only symptom I had was break through bleed every month which was abit of a shock.

Unfortunately my endo came back on the last couple of months which medically doesn’t really make sense and felt like a set back. A good bone health supplement may help as I noticed my joints became stiff and felt like they’d aged- it sounds weird but not ideal. (I know long term use is linked to osteoporosis.)

Fingers crossed you feel better and benefits while going through your treatment :)

livvyjustine profile image
livvyjustine in reply to SKOLIVE

Thank you for replying! Will definitely look for something for my bones as expected to be on it for around 6 months if not longer (until operation). Sorry about your Endo coming back! did the consultants give you any reason as to why/how it did? as I thought the Zoladex was supposed to stop it from developing further

vixstar84 profile image
vixstar84

Hiya, I'm also Stage 4 and did 2 rounds of 6 months of Prostap instead of Zoladex but think it's same thing just different brand. The first time I was worse the first 2 months and things settled by month 3 and the recent second round hasn't worked at all. I was told numerous times it shouldn't get worse first (by people without any endo knowledge!) but my Gyny (who I fully trust and is an excision specialist) explained it can definitely get worse first. He said the reason for this is because before your ovaries shut down/switch off there is a surge of estrogen released which makes your endo pain and symptoms worse. It can also take different durations to work - I was upset anf close to giving up on them after being hospitalised after 1st and 2nd but glad I stuck with them in the end as by 3rd it had worked. So stick with it and feel rest assured that it's normal, even poss after the next one but I'd say if no improvement by 3rd then speak to Dr or gyny. Hope that helps - my Gyny told me not to google anything or read too maby stories as the way it works or doesn't work is so different for each individual. Good luck! x

Ted39 profile image
Ted39

I don’t have Endo but was prescribed it short term for 3 months to shrink fibroids before surgery. I hated every minute on it, made me feel horrendous. It didn’t have the desired/prescribed effect that it should have. I too also had awful pain days and ridiculous blood loss while already being anaemic from fibroid blood loss. Joint and muscle aches, insomnia and panic were quite scary. My doctor told me it had thrown me into a profound menopause and persuaded me to persevere in the hope it would eventually work, but when I finally had surgery, the surgeon told me the Zoladex hadn’t shrunk the fibroid. I wasted 3 months of my life for nothing, I couldn’t even go to work as felt so bad!!! I also refused to take HRT when they were offered 3 weeks before surgery. I thought I’ve gone this far, 3 more weeks isn’t impossible. Just couldn’t wait to feel normal-ish again.

Praying real menopause will be a breeze after that?

So sorry to hear your struggle and hope it helps you because you do hear people say it changed their life for the better.

Stay strong and you can only try, but make sure you speak up if you feel worse. x

Moon_maiden profile image
Moon_maiden

Do you mind if I ask how you got on with the injection? Consultant has recommended it for a few months as he now thinks the endo is deep.

Many thanks

livvyjustine profile image
livvyjustine in reply to Moon_maiden

The first injection was absolute hell- like a week after it had induced the symptoms and it was way worse, was going to go to the hospital however i decided to just see it through and I’m wayyyy better, haven’t had any painkillers or been in any pain, going to get my 3rd injection in a couple weeks! Hope this helps x

Moon_maiden profile image
Moon_maiden in reply to livvyjustine

Many thanks, sorry missed the reply earlier.

Had it yesterday so will cross fingers and hope it goes ok.

Janeylou profile image
Janeylou

Hope your feeling better / improved now?

I had an injection last week and I’m feeling pretty rough. Had a couple bad flare ups with pain and last few days bad headaches on waking! I’m wishing I never bothered!

X

livvyjustine profile image
livvyjustine in reply to Janeylou

Heyyy, I get you 100%! Felt exactly the same way, i even wanted to ask the doctors if there was any way they could flush it out of my system! But I stuck with it and I’m much better off now, no pain whatsoever and I’m nearly 3 months in. I know everyone is different but I deffo say try and stick with it, it’ll get better girl X

Janeylou profile image
Janeylou

Thank you replying! did you get headaches, sickness? Try HRT?

I was sat in bed earlier and was thinking is there anyway i can get it out of me, i am really hoping it gets better, i got really bad endo had loads of awful ops and had kidney issues, tried everything, if this works i wonder if they will take my last ovary out!

Its all very scary at the mo! x

livvyjustine profile image
livvyjustine in reply to Janeylou

No headaches but sickness was crazy, vomited like way over 20 times each day and was unable to eat etc. I was given HRT but I didn’t take it as I felt like I’d be dependent on it to suppress the side effects of the menopause, and I’m happy as the hot flushes etc have really calmed down. But they were sooo overwhelming at first. Ahh I’m so sorry! If it helps my endometriosis pain was sooooo bad before. Used to have multiple ‘flare up’s’ each day, was on codeine and other strong medication most days. My whole life was impacted. I’m still waiting for a proper removal surgery, but I’m deffo a lot better and I hope it has the same benefit for you! X

Moon_maiden profile image
Moon_maiden in reply to Janeylou

Hi

Could I ask what kidney issues you had?

I was getting issues last year with pain and levels dropping. They went back to normal after starting desogestrol. This was before endo diagnosis. When pain kicks in it still includes kidney area.

Many thanks

Janeylou profile image
Janeylou in reply to Moon_maiden

Hiya,

Last year endometriosis blocked my ureter, ended up needing bladder reconstruction surgery & left ovary removed . My left kidney swelled I had severe hydronephrosis, my blood pressure shot up so high was poorly! I was trying for a baby at the time.... given up on that now. X

Moon_maiden profile image
Moon_maiden in reply to Janeylou

Many thanks, you’ve been through a lot.

Have your Kidneys recovered or more ops to go?

I haven’t had children, I’ve read how much this can effect things, I hope things improve for you.

I’ve only started to wonder if the kidneys are effected, consultant suggested MRI after Zoladex, have to see how things go. He now thinks it’s in the bowel.

Janeylou profile image
Janeylou

Thank you lovely! Wish you all the best x

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