Decapeptyl injection long term use?

[Lillybob]

Hi there! I have just had my second Decapeptyl injection that lasts for another 3 months. My Gynae has changed his mind about operating and wants to keep me on this long term, he says he has a patient who has been on it 10 years, has anyone else had experience of it over the recommended 6 months? Thanks! Lx

[Nicola79]

I was on decapeptyl, my injections were monthly and was meant to have. 6 month course but unfortunately due to side effects I only managed 4 months. I was told that they prefer not to have you on it too long and it's not a long term solution. That's what I was told so I would look into it further if I were you!

[Clem01]

I'm in the same situation as you. I was due a hysterectomy in Sept but then they tried the depo injection & I stopped bleeding for the first time this year. My gyn now wants to delay my hysterectomy until Xmas to see if this works longer term x

[daffodil]

I was on decapeptyl for 2 years and it was miraculous for me and I would absolutely have opted to have it long term,but was refused any more.It has significant effects on bone density and I now have low bone density,so they will not give me any more.I am in same position as you ,in that for other health reasons I have been delaying hysterectomy for at least 6 years and it was decided to try to medically manage my endo.As the decapeptly was so effective( no pain for 2 years and no periods)-none at all) I begged to be kept on it,but it is only licensed for 6 months treatment.It maybe psssible for you to manage a few years,but 10 yrs is a long time and your GP would I presume be prescribing outwith the rules? Actually I wish we as patients could decide( eg like when you consent to drug trials) as I would happily have decapeptyl long term,due to the huge improvements in my quality of life.

Surgeries to excise endo do have significant risks but done by the correct skilled surgeon seem to be the best way of getting the endo out.I think also your age has to be considered? I am in late 40s,so hoping for natural menopause -which ain't coming!Check out the accredited endo centres -there are lots of posts on here -and make sure your surgeon is not just backing out as he/she has not the skills.

The other thing to consider is that it is only a temporary solution and when you do come off it,you will have a massive flare.This is what Ive been experiencing,since last October when I came off long term Depo Provera jab.All the hormone treatments are the same -they don't cure,just hopefully( and not always,as some ladies do not respond) stop periods and prevent further spread of endo.Every single time I have had a treatment,which has helped I have ended in hospital with the flare after stopping.

Hope this helps?

[Lillybob in reply to daffodil]

Thanks everyone...such a headache when you can't trust the medical profession isn't it! Take care xxx