Zoladex experiences! : Hi all, After... - Endometriosis UK

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Zoladex experiences!

Hfm89 profile image
17 Replies

Hi all,

After moving to North Wales and waiting 18months for an ‘urgent’ appointment I finally saw a new consultant at the beginning of October. I am currently waiting to have my first Zoladex injection (waiting for my GP to order!) I just wanted to know what your experiences were like, I know everyone reacts differently. I’m in pain at least 3 out of 4 weeks of the month so I’m really hopeful this helps in at least the short term. My doctor warned me that it can make my symptoms worse initially - what was everyone’s reaction to the first injection? I have an holiday booked and I’m wondering if the injection will make me pain any worse than my ‘normal’ pain if that makes sense?! And how do you find the menopausal symptoms?

Any advice would be greatly appreciated!

Hayley

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Hfm89
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17 Replies
KlP28 profile image
KlP28

hello

I was put on Prostap injections 4 months ago. Think Prostap & Zoladex are pretty much same thing. I had my first 2 monthly injections & thought omg, I actually have some pain relief that works! I was over the moon! & then since my 3rd injection, disappointingly I’m back where I started. In pain most days again, having to take pain relief, which doesn’t seem to touch it.

I hope you have a better experience. Worth a shot right!? That was my thought process.

Good luck! X

Hfm89 profile image
Hfm89 in reply toKlP28

Thank you so much for replying!

Sorry to hear the relief was short lived for you xx

To be honest, if I get even 2 months of improvement I’ll take that! Did you take HRT alongside it? I’ve just got my appt through for tomorrow - excited but also very nervous about the actual injection 🙈 xx

KlP28 profile image
KlP28 in reply toHfm89

yeh, I’m on tibolone tablets (HRT). I have a couple of side effects of the menopause but I’ll take that over the severe endo pains everyday. X

Red1_rose profile image
Red1_rose

as you said it yourself everybody reacts differently.at the end of the day drugs are drugs and chemicals .zoladex can be fatal in time.i have had zoladex goseline its called .3 months it raised my BP ..4 months i was tired .blood sugar was rising .then i had accidents on the road not able to reach toilet in time..i was scared not knowing what was happening to me .and no GP No professional followed me up ..i could have died not knowing what is happening to me .and probably once dead it would have been written in my death certificate died of high blood sugar and high blood pressure and heart attack.i went through a lot with zoladex injections .

Hfm89 profile image
Hfm89 in reply toRed1_rose

Really sorry to hear you had such a bad experience with it xx

ShuBoo profile image
ShuBoo

Hi,

I’ve just had my forth Zoladex injection. My first one was as the monthly one in April to make sure I wouldn’t react and I’ve just had my 3rd 3 monthly ones. It took a couple of weeks to settle but it’s been a god send for me to be able to get on with my life.

I was also prescribed HRT from the outset. The sweats are awful. I’ve put weight on but the pain is massively reduced while I wait for surgery.

Good luck!

Hfm89 profile image
Hfm89 in reply toShuBoo

Thanks so much for the reply! Really pleased to hear it’s given you some relief. The majority of people I’ve spoken to have said the same that they do have some side effects but they have been a god send in comparison to the daily pain!

I had my first injection this afternoon and it wasn’t as painful as I was expecting and was over quickly. I have got absolutely awful cramping now and have started spotting - not sure if it’s just a flare up though not sure if it’s too soon for my body to have a reaction to it? Either way hopefully will start working for me soon!

Steffers profile image
Steffers in reply toHfm89

when I had my first one, the cramping started like u straight away (prob worse than normal cramps) and very minimal spotting as I’ve had an ablation

Hfm89 profile image
Hfm89 in reply toSteffers

That makes me feel a bit better that you also had an immediate reaction. I had a very rough night but seems to be manageable today with painkillers and tens machine!

Have you found it’s helped you once it settled down?

Steffers profile image
Steffers in reply toHfm89

yes, been amazing 😊 helped my skin as well which is a bonus!

Currently waiting for a hysterectomy (have tried the pill, medication and the ablation) when I had a gap between injection wearing off and seeing gynae it started up again. While on injections I forgot how bad the pain is, and made me Question whether to go for full hysterectomy but feel really confident it is now the right next step

Hopefully it works for u 🤞

Hfm89 profile image
Hfm89 in reply toSteffers

Hopefully the wait for your hysterectomy isn’t too long!

Mirena worked for me for a number of years, I always had to get it changed out earlier than the 5 years but the third one I had made me an emotional wreck and it didn’t keep either the bleeding or the pain at bay where the others completely stopped my periods and most of the pain.

Hoping Zoladex helps while i decide on a hysterectomy

Steffers profile image
Steffers in reply toHfm89

hope it works for you 😊

Runsooty1 profile image
Runsooty1 in reply toHfm89

hi there. I have just started Zoladex a week ago for Adenomyosis (other treatments have failed) did you experience bloating or swelling? I look pregnant. had this before the injections anyway but it feels worse..it may be the Adeno though as it has got worse for me. Any help appreciated! Thank you

Hfm89 profile image
Hfm89 in reply toRunsooty1

I only had mine yesterday but I seem to have reacted to it right away. I’ve had pretty intense cramping, bleeding and yes I have a very swollen tummy.I have both adeno and endo so am all too familiar with swelling! My consultant did say it can initially make things worse before you get any relief from it so here’s hoping it settles down for us both!

Runsooty1 profile image
Runsooty1 in reply toHfm89

thanks for your reply. I hope your symptoms settle down now you've started it. I've only had the injection a week ago and my symptoms have got worse I really hope it starts to work soon!!!

Hfm89 profile image
Hfm89 in reply toRunsooty1

I’m almost a week in too now. The swelling is going down - I was able to wear jeans again yesterday 🤣 but I’ve still got such a bad bruise where I had the injection! I’m still suffering too but still hopefully that it helps once my body has got used to it. I haven’t had any hot flushes or menopausal symptoms yet!

ShuBoo profile image
ShuBoo

I had mine this morning and it’s wiped me out, please make sure you are giving yourself a chance to rest. It does give you a rush of hormones so it maybe connected it may not but I know it’s hard to stop your head going round in circles.

Hope it does help xx

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