Treatment options Zoladex or wait and see

Stage 4 endo, diagnosed a few months ago, large chocolate cyst removed along with ovary. Consultant strongly recommended Zoladex but I'm very frightened about the side affects. Hysto was also mentioned although they said that wasn't an option right away. I have 2 children and have been told that the Zoladex may affect my chances of having more. My GP is not v knowledgeable and said they would defer to what the consultant has recommended.

Since the diagnosis I have started to lose my hair, I feel tired all the time no matter how often I rest. I have also recently become achey with niggling abdominal pains (like before the endo was diagnosed) and periods of severe pain that takes you're breath away. Menstrual cycle has become shorter but much much heavier.

I haven't started on the Zoladex even though my surgery was a few months ago. I'm so scared of side affects, have heard it can make you gain weight too.

Anyone who has had the course of Zoladex ( consultant recommended 9 month course) help with any info- shall I just continue the wait and see approach. I have been thinking of getting a second option from an endo specialist but have no idea about how to get a referral to an Endo specialist centre or whether it would even be allowed or needed.

7 Replies

  • Sounds like you are having a hard time :-(

    I spent ear avoiding Zoladex, and wish I'd had it instead of my most recent surgery.

    Side affects aren't too bad (even without add back (HRT))... And I usually get every single side effect :-)

    Try it, but give a few moths to settle in... Most people I know love it and want to stay on it for as long as possible.

    In the long term, a couple of months isn't a long time if you dot like it... But if it works its a god send!

    Be aware that there are different HRT's available, just like the pill... So if you have a pill you get on with then maybe there is a similar HRT which would be the best for you.

    Good luck... And remember that the hot flushes are nothing compared to the pain!

  • Hi,

    I can understand why you are aprehensive but from my experience (stage 4 endo, 2 x laps and a ruptured appendix due to endo, no children and 29 years old - suffered since I was 17) I have had pain that has got worse and worse over the years, which about a year ago became unbearable and a week after my laparoscopy and removal of lots of endo it was all back and no better. I started my course of zoladex in May and am having last one now but so wish I could keep it forever (only similar thing is a total hysterectomy and salpingo-oofrectomy) because with the exception of the hot flashes which compared to pain had is nothing - I feel almost no pain x I would go with it, it really does work x

  • Thank you for your replies, I have been putting off the Zoladex for a while even though I had an underlying feeling that I couldn't realistically do the 'wait and see' approach.

    Is it worth asking for a referral to a specialist endo centre? My gp doesn't have much info about endo and I don't think I will get to see the consultant again as he told me the only time he would see me would be if I needed more surgery or developed another chocolate cyst but he also said there would be no regular screening/scans or checks.

    The impression I got was that unless I presented at A&E they would pretty much leave me to my own devices after the course of Zoladex. Which didn't make sense because surely regular checkups and monitoring would be better than waiting for something big and unexpected to happen and then try and fix it?

    I have never had any major health issues or surgery but in the last few months I have had an ovary removed and major abdominal surgery (they couldn't do keyhole) so I guess it has knocked me for six in a way. Still trying to make sense of it all.

  • they wanted me on zoladex too, same as you i felt very unsure, being 25 the side affects put me right off, but i was told its the best chance of getting pregnant after a course of zoladex........they all say different, probably why i am so unsure, what one consultant says is right the other disagrees, so i guess its down to me, so i am being monitored aswel as procedures, dye, maybe the ballooning, had my lap and treatment in may and after and 5 months the pain has eased alot :) still very tired (maybe more so) ibs too, but lets see xx

  • Hi hun, I haven't has zodelex but have had hormone injections (they are all pretty similar i think) quite a few of my symptoms like your own and the side effects definitely outweigh what you are going through now and i didnt have hrt treatment with mine. Your body does adjust as well. only you know what is right for you, so good luck xxx

  • Stripyspots... Yes! Get a referral to an Endo centre! (If you are near london) The one in London at UCHL has very very good specialists, not that I have been, but it has been recommended by lots of people!

    Good luck!

  • Thank you for all the replies I think I will go for the Zoladex but also ask go for a referral to specialist centre. I wish I had known about this site a few months ago it would have helped with my dithering. :)

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