4th zoladex injection

[Lilly2010]

Hi can anyone tell me what happened when you stopped zoladex injections I'm on my 3rd injection and this month has been awful I've had flare ups mainly every day where as at the start I wasn't having any at all my stomach is so sore and bloated I just don't no what to do anymore,I'm not sure if the injections aren't working any more but I'm so fed up with the constant pain everyday

[plotments]

I stopped it after the forth injection...similar to you it just made everything worse. They did say it could make endo flare up but would calm down. After no change with the forth one I decided to stop it. It didn't even stop my periods in fact it was making me bleed every two weeks. That was in March 2021 since then I've only had five periods and have no idea where I am in my cycle. The flare up has calmed but still in a lot of pain. I feel much better since coming off it though.Have you spoken to endo nurse or consultant about it?

[Lilly2010 in reply to plotments]

Yes I've told him about the muscle aching but only lately am I have so many flare ups but with the muscle aching he said take an anti inflammatory an hour before even with food I'm bad now too it's just getting me down so badly at the moment like today I was in pain for a full 3 hours xx

[plotments in reply to Lilly2010]

So crap what we have to put up with.. has the prostap stopped your periods? Are you taking HRT as well?

Have you tried a hot water bottle? No magic fix but it's soothing.

[Lilly2010 in reply to plotments]

No all I've got is codeine fed up living a life where I can't do anything without painkillers I'm on nothing else but this injection and I've researched so much about this hrt too I've not had a period for about 2 years I was on hormone pills for my endo for 3 months then straight on to this injection I've emailed my specialist and asked him what does he suggest I do going to cry if he says carry it on and bare with it x

[plotments in reply to Lilly2010]

Totally understand how you're feeling. They've no idea what we're going through, like to see them try prostap and just put up with it!! I feel like a tube of smarties I'm on that many meds at the moment.Speak to them about HRT, Some consultants wont give prostap without it as it protects our bones plus helps with any menopausal side effects.

If your not happy taking it you don't have to, just tell them it's not working for you. I went straight from the pill to prostap, think body sometimes just needs a break from it all and needs to get on with what it wants to do naturally for a bit.

Get yourself a water bottle or wheat bag, like I said no quick fix but anything that helps a little is worth trying.

[Lilly2010 in reply to plotments]

Yeah I use a wheat bag Its constantly attached to me I get such bad back ache to forever in epsom salt baths its just so draining isn't it feel like screaming sometimes for someone to listen like my gp the other day he went "just take period pain medication" was like wow you really have no clue this is far from period pain I feel like I have barbed wire stuck inside me xx

[plotments in reply to Lilly2010]

Oo a bath, forgotten what one of those feel like. Haven't been able to get in one for a year now...crazy. Used to love having a soak.That's how I describe pain, like barbed wire is wrapped around things and someone is twisting it tighter and tighter.

Don't know what's more draining being in constant pain or having to constantly push GP for help.

[Lilly2010 in reply to plotments]

When I need a gp appointment now I always ask for a female because I may as well talk to a wall with a male gp who knows absolutely nothing about endometriosis I get really weird pulsating feelings really low down do you ever get those? Or am I just the odd one 🤣 it's so strange

[plotments in reply to Lilly2010]

I get that sensation as well, hard to describe put not nice

[Aprilray in reply to plotments]

Hi, I am i just 8my 2nd zoledx shot, and I am scared of the side effects, the 1st one was horrible, my doc convinced me to use the hrt, angeliq however looks like there us a shortage, and I am petrified when these side effect begins.

[Lilly2010 in reply to Aprilray]

Have you had the muscle aches yet? Mine started on the 2nd one and the hot sweats that wake me up nearly every day at 4am feel like I'm on the bloody sahara desert 🤣

[Lilly2010 in reply to plotments]

I've been taking of the injections now he finally listened to me so happy! Hahaha xx

[plotments in reply to Lilly2010]

That's brilliant news, hopefully your body will settle down soon.Take care

[Ggrif]

Hi Lilly. Reading your message makes me so sad, I feel your pain!

I am one of the lucky ones I feel and last year got a hysterectomy which was very much needed for my situation.

I suffered for years with endo and also adenomyosis, the pain was unbearable, I started on the prostap injection but that wasn't strong enough so about 2 years later I went onto the zoladex injection. It took me about 5 months for everything to calm down, it was great the first two months then bad for 2 months but by the 5th injection it was fab again, I was on zoladex for a year, they then decided to tell me I shouldn't really be on it for that long, but I was dreading coming off of it as things were going so well, they started me on hrt from the start but that made everything so much worse, if you don't need hrt then I'd advise not to have it. It gave me the most awful headaches, I know for some people it's great though. I pushed for a lady gyne, nothing against men at all but I've had so many gynes, both men and women and tried 3 different hospitals! Finally I found the most supportive lady gyne and I'm still in touch with her to this day. She checks on me and even had me in to check my hysterectomy scars which they don't normally do. I know it doesn't help much with me saying I'm ok now, well kind of ok, 4 and a half months post op and getting there everyday.

I know your not fond of zoladex but if your gyne won't do anything else then please keep trying it. Maybe push to see someone else. When I was at rock bottom with the pain I phoned my Dr every single day and pestered them. It was awful and I hated doing it but I needed them to know I was serious and in so much pain. I honestly wanted to end my life, it got that bad I couldn't even walk.

If you need anymore advice then please contact me and I'll try to help. The gynes will keep you plodding on but they need to help you more, your a human being and only young! I'm 38 and now I can start to get on with my life, I know a hysterectomy isn't for everyone, I totally get that but there are so many other things they can do for you. They just need to know you really can't go on in this much pain. Good luck lilly

Gem x

[SilverBirch7]

Mine flared up around the 5th injection but it has settled again. Just had my 6th(last) and it hasn’t flared again. No idea what happens now they are finished!!!! I hope it settles for you, it sounds horrendous x

[Lilly2010 in reply to SilverBirch7]

This will be my 4th one the side effects I get are so bad 2 days after the injection I'm only on them till march thank god but I'm like you what happens when they stop

[justmai]

I was a test case for zolodex injections I had one every month for 5 years until I had my hysterectomy this was 23 years ago I had no side effects other than leave me with prominent veins in my breasts at that time but all it did was stop my periods didn’t stop edit growing. Was still in pain every month. But and I’m not sure if related or not have gone in to develop m.s later on about 10 years ago.

[Escapologygirl]

HiI was prescribed 3 3month doses of decapeptyl injections and I stopped after the 2nd one so after 6months as the sweats migraines muscle ache and dizziness was so bad even my gp refused to go ahead with the last one. My periods stopped a month after the first injection and the depression and constant crying just went into overdrive. Went back to the gp and he was like no this is not ok you were never like this before. He referred me to another gynaecologist who again pushed me coil and then the mini pill but the pill made me gain weight and extremely constipated and miserable and more depressed. So I think they have no clue what they are doing. This was all just since May 2021 and still have not had a period and wondering if I will. If you don't want to continue then don't its your body and you know what is best

[Lilly2010 in reply to Escapologygirl]

I've emailed my specialist asking what to do next because I'm so miserable on this like now it's been 3 hours with constant pain and no pain killers are touching it xx

[Escapologygirl in reply to Lilly2010]

I hope you have a good consultant and get answers sadly mine just asked if I was following the instructions and give it time when I complained, he even asked if the gp knew what he was doing! I found the only thing helps is lying on my left side in bed , I hope you get some relief

[Lilly2010 in reply to Escapologygirl]

I've been taken of it now so happy hahaha xx

[Escapologygirl in reply to Lilly2010]

Oh I'm glad hon takes a while with the 'withdrawal ' but I know I felt a lot more 'normal ' after than when I was on it

[Lilly2010 in reply to Escapologygirl]

My gp even agreed as much as its helping with the endo the side effects are giving you no life and making you so down and depressed he needs to take that into consideration so he's said to come of them and book a phone appointment so I'm not sure what he will do next I've only had one surgery to diagnose the endometriosis so not sure if he may operate again xx

[Escapologygirl in reply to Lilly2010]

Sounds like you are in a similar situation to me except when my gp saw the side effects I was having a week after the 2nd injection he thought I'd had a breakdown or a severe allergic reaction and refused to give me any more injections. When we contacted the consultant he was like 'are you following the instructions?' To which I was like yes medical degrees are not bought in the poundshop! So I got another referral to another gynaecologist and again he pushed the coil couldn't believe my reaction to the injections prescribed the mini pill which also didn't agree with me. I gained a stone even though my clothes still fit me and I was so depressed and miserable and cramping. I came off it and feel better not being on a treatment if that makes sense. I am so tired dizzy and sore but at least its not exacerbated by injections or pills. I wish you luck