Stopping zoladex implants after 2yrs - Endometriosis UK

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Stopping zoladex implants after 2yrs

Moley5 profile image
14 Replies

Has anyone had any bad side effects when coming off zoladex implants after having it a long while or did it make you feel better? I have grade 4 endo and i dread going back to as it used to be!

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Moley5 profile image
Moley5
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14 Replies

I've been on Zoladex now for 7 years. Recently I didn't get it for a while due to lockdown and my endometriosis flared very badly. I'm not yet back to where I was. I personally can't cope without it

Moley5 profile image
Moley5 in reply to

Ok thankyou. I am glad it works for you.It has been great for my endo pain but im aching a lot lately in my joints and pelvis/back and i know it affects bones and muscles,so i was worried

Moley5 profile image
Moley5 in reply toMoley5

7 years is a really long time! i was told my limit is next feb which is about 2 and half yrs for me?

in reply toMoley5

Unfortunately I just can't cope without it. I'd have no quality of life at all. It's weighing things up sometimes isn't it?

It isn't just the pain, more surgery could be needed and I've had way too much already.

It seems to do me nothing but good but I know it's not good for my bones.

Moley5 profile image
Moley5 in reply to

Thats what i worry about,i was told all thats left is a complete hysterectomy if i come off zoladex and i am still suffering.

Keke123 profile image
Keke123 in reply toMoley5

Are you taking hrt and calcium supplement? That’s what my dr has given me. We went through multiple hrt’s before I found one that really settled with me. And I just take calcium for my bones and teeth.

Moley5 profile image
Moley5 in reply toKeke123

Hi,i take the calcium ,but im not on hrt now because my gp didnt think it necessary and it made my side effects worse when i was?she checked my bones and all was good at the start of the year.i just ache like crazy now and my endo symptoms are painful again,it worries me

Keke123 profile image
Keke123 in reply toMoley5

I’d maybe look into the hrt again and go for a different one as it’s to stop your bones deteriorating.

I found by doing an estorgen only one was the winner for me but you deff need a hrt if you are taking zoladex. My consultant went mental when I said I hadn’t been taking one because I didn’t like how it made me feel. I had really bad side effects.

Or just go back to your consultant over your gp. They just haven’t got the knowledge in the speciality of endo/zoladex. ESP if you are worried. I’m quite lucky as mine is doing phone appointments.

Moley5 profile image
Moley5 in reply toKeke123

Thanks i will ask,im due my next injection on friday. Take care.x

Keke123 profile image
Keke123

I came off zoladex to have another lap surgery to get what had grown between surgeries and seeing that zoladex worked for me.

I’d say it was shortly between the 1st and 2nd month off the pain came back, I hadn’t been in pain for a long time so it felt much worse, I was tired, hormones flaring, I cried for about 6 months.

Went back on it as fast as I could and life is good again.

I was just so shocked at how fast the pain came back.

I think what is great about us women with endo is we get used to the pain when we have it constantly, we become numb to the actual magnitude of it. Sadly it will be a shock going back to that but prepare with meds, I had an electric heater that I couldn’t sleep without. All things to help with the endo pain returning.

Moley5 profile image
Moley5 in reply toKeke123

Oh no☹️,i may just stick with the zoladex til feb then.imscated to go back to the full pain again.thanks for sharing your experience.x

Crispy69 profile image
Crispy69

Hi, I’ve just come off it after 12 months of treatment. I had a flare the week after it was due but since then I’ve been ok. I think it’s because I’m still in menopause post treatment. But everyone reacts differently. I hope it’s not too bad for you xx

Moley5 profile image
Moley5 in reply toCrispy69

Thankyou.Glad you are doing ok.x

Moley5 profile image
Moley5

Thanks im glad you are feeling good.its good to hear other peoples experiences

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