Zoladex Injections: I’m waiting on a total... - Endometriosis UK

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Zoladex Injections

LL-911 profile image
16 Replies

I’m waiting on a total hysterectomy due to endo, fibroids and PID. I have seen a consultant on the NHS and also private to speed things up. Whilst I am waiting my private consultant wants me to have Zoladex injections. How have you all found this? Xx

16 Replies
Heartof3 profile image
Heartof3

Are they leaving your ovaries?I'm also waiting for a total hysterectomy, leaving my ovaries in. I was offered zoladex injections too,but I refussed As they give you menopause symptoms, which I don't want as I'm trying to avoid this by keeping my ovaries.

Although I've read good & bad reviews on them, you have to do what feels right for you 💜

LL-911 profile image
LL-911 in reply to Heartof3

Thank you for your reply 😊. I am having everything taken out including ovaries. I have just turned 50 and perimenopausal; the hot flushes and brain fog started some time ago, unfortunately 😳.

Take care xx

Heartof3 profile image
Heartof3 in reply to LL-911

Ah bless u.I hope all goes well for u 💜

TedLocat profile image
TedLocat

Hi LL-911,

I’ve just come to the end of my zoladex treatment, and although I experienced the usual side effects of hot flushes etc, they completely outweighed the endo symptoms I was experiencing. Since March of this year (when my zoladex started), I have not had 1 of my usual endo symptoms, so my personal experience of them is that they’ve completely changed my life for the better!

But as Heartof3 has said, you have to do what you feel is right for you.

Best of luck with everything x

LL-911 profile image
LL-911 in reply to TedLocat

Thank you for your reply 😊. Hopefully I won’t have any side affects too. Now waiting on my GP to sort the prescription.

Take care xx

TheUntamed profile image
TheUntamed

I had Zoladex for five months pre-surgery without HRT. Usual side effects like feeling the heat more and dryness, but the crippling endo pain completely disappeared and periods finally stopped. (They’d been going 3/4 weeks with the Mirena.) I felt better than I had in a year and it made the surgery less traumatic because there was less inflammation.

csytasista profile image
csytasista

Hiya. I was on Zoladex for a year, came off for 5 months and am now just back on it. Menopausal side effects (reduced by addition of HRT) - but life changing in terms of reduction of endo and PMDD symptoms. I am relieved to be back on it, despite the side effects. I'm 40, only have one ovary and have been perimenopausal for a few years. I am waiting for an appointment with an endo specialist - to discuss options for surgery including possibly removing my remaining ovary and womb. x

Jingles11 profile image
Jingles11

Hi I’m also waiting for a total hysterectomy due to multiple fibroids,endo and adenomyosis .I started Zoladex about 4 weeks ago and to be honest so far it’s been a god send. I had excessive bleeding and clots with horrendous pain both have stopped. I do have mild menopause symptoms but that’s nothing in comparison to the bleeding etc.I’m 51 and was having peri symptoms anyway…also it’s easier when it comes to surgery as it reduces the bulk of the uterus and helps with blood loss .I also had Zoladex ten years ago pre surgery for fibroid removal and I can’t remember too many difficult side effects.

Cloverwolf profile image
Cloverwolf

I had a lot of mood symptoms at first for the first two months but I seem to have adjusted now. I am pleased my periods have stopped I was ending up in A and E with the pain.

Fenblue profile image
Fenblue

I’m nearly at the end of my 6 months of Zoladex (& HRT) post op and it’s honestly been amazing. Zero endo symptoms, of course some brain fog and tiredness but I would take that any day over the pain I was having before.

Pecas profile image
Pecas

LL-911 My experience with Zoladex has been quite negative this time. I have had endometriosis for over 20 years, I have had 4 laparoscopies and this is the third time that I am on Zoladex. In addition, I have had fibroids since the beginning of 2020.

I will have my 5th injection of Zoladex next week and I still have a heavy period as usual and horrible pelvic pain that goes on until my feet. I have seen about a 20% reduction in endometriosis symptoms only while I do not have my period.

I was not prescribed HRT and the menopausal symptoms are very difficult to manage too, especially the severe hot flashes. Previously, they were better when I was on Zoladex.

ferns80 profile image
ferns80

HiI was on zoladex for a year before surgery about 4 years ago. I had the pill as add back. I was 38/39 with stage 4 recto vaginal endo.

When I first started it I had a really heavy painful bleed but after that periods stopped, I was able to come off heavy duty painkillers and return to work. Didn’t really have any side effects of note.

I’m now on the waiting list for full hysterectomy and ovary removal and this time have been put on Decapeptyl instead with HRT as add back. Have had a few hot flushes but nothing major, but I have had quite bad joint pain and swelling in my fingers which I never had with zoladex. Endo Pain is mostly gone - just flares up on occasion.

Unfortunately I think it’s probably one of those things that just affects people different and you probs won’t know until you try it. I was quite worried about side effects before I tried zoladex but the pain started to get so bad I knew I had to try it and it did work very well for me.

Charlie_lt98 profile image
Charlie_lt98

I’ve been under private consultants my whole journey as the nhs just weren’t interested and were adamant it was IBS. I have a laparoscopy a month ago and my follow up 2 weeks ago and was told I have a non communicating unicornuate uterus and I need to have the non communitive part removed by an adolescent gynaecologist. Whilst waiting to see them I my consultant told me to try Zoladex injections which my GP would be able to deliver. I spoke to the GP and they point blank refused because I am too young (23) and that they only deliver Zoladex to cancer patients if instructed by a oncologist. Currently in limbo with whether I should wait till I see the adolescent gynae or speak to my previous consultant about how to proceed…

My endo consultant said that they would give me a HRT patch to manage the symptoms of menopause because a sudden drop in hormones could send me a bit crazy…

This isn’t much, just sending my experience xxxx

EndoTTC profile image
EndoTTC

Hi LL-911,

I was on Zoladex for 3 months pre-op, it did completely stop my periods (and endo symptoms) but I really suffered with the side effects, I wish I'd taken the HRT they gave me. By the time I decided to give the HRT a try it was too late as it takes at least 4 weeks to kick in. Side effects for me were incredibly intense hot flushes (feel more like mini panic attacks), night sweats, almost complete lack of sleep.

Zoladex + HRT (if that's an option for you) would definitely be the one to go for!

Good luck xx

Devongirl2022 profile image
Devongirl2022

Hello,

I am currently waiting for my 4th zoladex injection to be done but I can honestly say like many others have said it’s been a complete life changer for me.

I haven’t had a period (apart from the odd light spotting) and my endo pains have nearly completely stopped - I’ve got severe stage 4 endometriosis. I do get really bad menopause symptoms but they completely out weigh the endo pains and I’ve been put on medication to help me with these ( especially the hot flushes & night sweats)

I feel like I can actually plan to do things and not worry about if I’ll be able to attend because I’m in to much pain or worry I’ll need the bathroom😔..

I had an operation done end of June but unfortunately once they opened me up I was a lot worse then what they originally thought so ive been put on zoladex to help with my pains but to also make the operation a little bit better and hopefully less complicated.

You have to do what you think is right for you though and that may mean giving zoladex a go and if you don’t get on with it you can stop it.

I hope it all works out ok.

❤️

Greenlady48 profile image
Greenlady48

hi

Sorry for the late reply

I’m in exactly the same position

I also have endometriosis and adenomyosis that caused the really large fibroids. I’m awaiting a full hysterectomy as I’m now 51 and blood tests show post menopause.

I had 3 lots of zoladex and honestly all it did for me was give me a really heavy period. And made the pain worse.

As once again there’s no cure for what we have they try everything.

good luck 🍀

I

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