Nervous about 1st zoladex injection - Endometriosis UK

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Nervous about 1st zoladex injection

Mrscinq profile image
5 Replies

I've been told by my consultant that to treat my endo in the first instance I should have a mirena coil fitted and a three month course of Zoladex to help kick start the effects of the coil. I really don't want either but ill give the coil a go if it means in time he will give me a hysterectomy, I have heard really bad things about zoladex and at 32 I'm not sure how I feel about taking it. I suppose my main questions are. Are the side effects bad for all women? Can I stop treatment if I find I can't cope with it? Should I say no and demand hysterectomy?

Thanks for reading x

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Mrscinq
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babypink profile image
babypink

hya love ,,hope your ok ive had the coil fitted twice in total , hasnt been god for me either time wen ive tryed it give me sharp shouting pains in the bottom of my stomach vey bad sever cramps both time wen trying the coil i had it in once for 3 years and another time for 8months,, i gave it my best shot ,,but had to have it out ,,but some people its great for every bodys body react differently ,im on the dec injection very similiar to zoladex im 26 , been on it for 3months , hasnt taken the pain away not even slightly ,,but i have heard alot of people that it has worked for and been great for them , so im not the best person to be answering your question coz theys alot of people on here that could tell you how great it was for them , they dont normally like to give someone a hysterctomy before trying all the other options first, hysterctomy is normally one of there last options if all else fails ,,xxxx

Pookey profile image
Pookey

I'm waiting for a hysterectomy and in the mean time I've been given Zoladex. I'm on my second one and have no side effects etc. I was told the coil wouldn't really help with endometriosis although mine is really bad and one of my kidneys has failed due to endo in my uretea. I'm 42 so I can't wait for my op to just get rid of it all.

Good luck with it. I hope you are as good on it as I have been xxx

Impatient profile image
Impatient

hysterectomy does not rid you of endo. that's a myth, the 'only' benefit is to stop your heavy periods from happening while you are on it but with huge risks of side effects which will affect your life and could be permanent. Stopping your periods is what the Mirena should do too without the risks of the zoladex.

I had a Mirena installed at the same time as my 1st zoladex and had 3 more after it. Speaking with the benefit of hindsight, I wish I had not bothered with the zoladex at all, it was quite simply the most dreadful medication I have every experienced and I wouldn't touch it ever again.

The only reason it was given was to stop the periods right away, because the Mirena takes a few months to kick in.

However given that it is only a few months of a few more periods which I could have controlled with stong enough pain killers as and when needed, as I had been doing for years before the docs finally got me in for surgery, I really should have just stuck to having normal very heavy periods, pain and floods while they lasted, until mirena started working for itself..

Which it most certainly did, and it the very best thing I have EVER had medically speaking.

14 straight months without a period has been liberating in so many ways.

My only regrets with Mirena is that I didn't have it put in 20+ years ago, and that it only lasts 5 years, because I'd happily keep it in there till I get past menopuse age.

It gave me back a life I had lost. No more worrying about when I am going to come on, or how long it will last, or the everyday worry about flooding, the exhaustion from period pains and their meds, not planning any activities or social things because i would be 'on' and unwell, No PMT to worry about either, no food cravings for sweets before I came on, oh just so many ways life has improved and I don't even remember the thing is inside me. It really is like it doesn't exist 99% of the time. I do get one or two odd twinges occasionally but no more than that. Certainly not painful twinges.

My advice from my own experience is skip the zoladex, just have the mirena and put up with a few more periods till it kicks in. The zoladex is 24/7 side effects and you cannot escape them at all, whereas a period is a week or two at most of bleeding and pain which can be medicated to suit your needs, something which you are already familiar with and used to even if it flipping well hurts. It is worth putting up with a few more periods than risking the side effects of zoladex, and possbly irreversable side effects too.

That's my view based on my own experience. Others might love Zoladex, but they are a rare breed.

Sunflower846 profile image
Sunflower846

I had severe side effects with being on decapeptyl and wouldn't try it again. All woman are diff and alot I've spoke to loved it but it made my life hell and that was from my 1st injection. I have come off it and been put on provera tabs to try but just ask all the questions u need to as I was sent away with the injection with no information and my gynae wasn't very sympathetic when I went bak this week. Don't let them fob u off tho or pressure u into anything u don't want to do! Xx

Mrscinq profile image
Mrscinq

Hi. Thanks for all of the replies. I've M&S an appointment to see gp before making decision but based on your answers I'm 99% sure ill take Impatients advice and skip the zoladex as I agree that the pain is bearable and adding menopausal symptoms into the mix will just make my moods worse etc. xx

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