stopping Zoladex: I have been on Zoladex... - Endometriosis UK

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stopping Zoladex

GenaG profile image
6 Replies

I have been on Zoladex for 7 yrs now and it has been great, but I feel that I would like to come off now. Has anyone else been on for a long time and if s odid you have many side effects? I now have advanced Osteoporosis which is a well known side effect for long term use , and for my bone health and other reason I have decided to stop. My consultant is happy for me to stay on for a long time yet - has anyone else been on this long?

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GenaG profile image
GenaG
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6 Replies
Bokkie profile image
Bokkie

I did not realise you could be on Zoladex for so long. I too would be interested to hear if anyone else has. Were you not put on HRT while you were on it to help protect against bone problems? XXXX

daffodil profile image
daffodil

I have not heard of anyone being on it so long! I was allowed 2 yrs of Decapeptyl and it was miraculous and asked to stay on longer.I was sent for bone density scan and it was found I have osteopenia and so I am allowed no more.I think I remember seeing that you can have long term as long as you take add back HRT and your bone density is ok,but in your case I am puzzled your consultant would let you keep going with advanced OP.However I don't know your history,so there may be others factors involved.I managed to keep the GNRH agonists going longer than 6 months ( recommended time)as I also have numerous other serious health issues which made it too risky to operate.If they can do a lap,I would advise that?Also when you come off Z,be prepared for a huge flare.All these drugs do is mask the issue-they are not cures,even if when you are on them you get great relief.

I have been seeing a herbalist and nutritionist who is treating my endo and also working on my bone density.Would be worth getting a complememtary therapist who would treat whole body,if you are able to afford this.

Go with you instincts -I would be very unhappy to keep going with a treatment which could land me in more pain in future.Having watched my Gran suffer so terribly with OP it is something I would not wish for.Re OP I can recommend some good books and also websites,if you want privately mail me?

Hope I have not been incorrect in this advice -have never had Zoladex but assume it works in same way as GNRH?

Sending you my best wishes.

daffodil profile image
daffodil

I do hope you have been on add back HRT.You are only allowed 6months without Hrt.

GenaG profile image
GenaG

Been on HRT but osteoporosis has now developed quite bad as a full HRT patch made me bleed again bad and pain was dreadful. I have decided not to continue with zoladex ..... I think for the last 6 yrs it was fantastic but the last yr has been hard . Is there any other treatments that anyone could recommend. Thank u xx

Bokkie profile image
Bokkie

Ask your Doctor about the Depo-Provera 3 monthly injection, but be prepared for quite a bit of weight gain; that's a side effect I have experienced but I also have no periods, so you must look at the pros and cons of it personally for you. Good luck. I hope you find the right treatment for you. XXXXX

GenaG profile image
GenaG

Hi. I am 43 yes old and since being on zolley I have gain 3.5 stones and have high bp . I dont think im allowed the depo or pill....... but will def ask... thank u

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