Long term zoladex use: Hi, I've been on... - Endometriosis UK

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Long term zoladex use

miss-ruby profile image
3 Replies

Hi,

I've been on zoladex for 3 months and am having another 3 month treatment. My consultant has said he is not overly happy keeping me on it for risk of osteoporosis (I'm 27) I've tried a mirena and cerazette, both weren't effective. Has anyone else had zoladex for more than 6 months?

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miss-ruby profile image
miss-ruby
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catswhiskas profile image
catswhiskas

I'm 27 and was on zoladex for 15 months. My consultant started to get concerned after me having the implant for more then a year, because of osteoporosis and also because your body starts to get immune to it after so long.

I was being referred to another hospital for my surgery, so my local consultant chased them up and I was seen pretty quickly after that.

They now say where I was on it for so long that my womb and ovaries have all shrunk, but that is expected and that now I won't be having them it will start to increase in size, they even said that I should still fall pregnant relatively quickly.

Don't worry just yet, but if you see it becoming a long term thing, start chasing your consultant!

Good luck x

JulesUK profile image
JulesUK

First time I was on it was just for six months but the second time was for almost two and half years my consultant said as long as I was taking hrt I could stay on it as long as I wanted. I found being on it helped a lot with the pain so I preferred to stay on it for long period. I decided to stop for a while and my doctor said I could go back on any time I wanted. Not surprisingly after a couple years I was back in having another lap. From my results the injections didn't affect my reproductive organs its just the growing endo that trys that! I think my period came back about 6 months later after the long course but the longer the better in my case!) I didn't experience getting immune to it at all however the three monthly injections didn't work for me (wore off too quickly) so I always stuck to the monthly ones which I found to be more effective for me.

I was about 32 when I first went on it and about 35 the second so I'm older than you but I don't regret going on it at all. I think there are tests you can have to check for oesteoperosis so maybe you could get regularly checked? Good luck, take care x

Impatient profile image
Impatient

Dexa scans x-ray your trunk bones (skull, spine, pelvis etc) to check for bone density and degree of loss over a period of time.) Anyone who uses these drugs AGAINST the manufacturers maximum life time recommended dose of 6 months, will not be any position to sue anyone if they do end up with long term side effects like heart disease and osteoperosis or any of the other side effects that these drugs cause that don't necessarily recover once the drug is stopped. it would be far cheaper to have a decent endo surgeon do a thorough job of surgically removing the endo lesions, than stay on these drugs.

So before deciding to continue or even to go back on them, push for an appointment with an expert surgeon and see what can be done to rid you of the actual endo lesions where possible.

Not a decision to be taken lightly, and if your GP is reluctant to let you have the drug for any longer. that speaks volumes about his concerns for your longer term health.

You're only 27. Say you have the drug for 2 years, lose a quarter of your bone thickness inside in that time what will you do after that to combat endo? The endo will still be there just waiting to erupt in to life again, and you won't even be 30 years old, with the bones of a 65 year old woman. Something to seriously consider before continuing.

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