Experiences of coming off zoladex or other long term hormonal treatments to conceive? Please help.

[hcromps92]

Hi there

I am 31 and was diagnosed with severe stage 4 endometriosis at 17. I've been on zoladex for nearly the whole time since diagnosis add back HRT and regular bone scans. Despite zoladex I've had a lot of pain, and have had surgery 5 times and each time endo has been extensive, so although zoladex has helped, it hasn't managed to totally prevent the progression of endometriosis. However it has made my symptoms mostly manageable with painkillers etc.

My partner and I have decided we want to stay a family. I am coming off zoladex in a few weeks (I've had my last injection). I am worried that my cycle will take ages to return after so long on treatment, that my symptoms will he difficult to manage and I'll end up in severe pain and needing surgery for large cysts etc and the NHS waiting lists are long and that ultimately we won't be able to conceive and I'll have put my health at risk for nothing. I know I don't have a choice though but to come off zoldex if we want to try and have a family.

Has anyone else had experiences of coming off zoladex after such a long period on it that can share any experiences? I'm keen to know how long it took for your cycle to come back, and anything you did to help manage your pain.

Thanks in advance

A fellow endo sufferer x

[slinky00]

Hi

I don't have experience being on Zoladex for such an extended period of time as you have but I was specifically put on Zoladex to tackle my adenomyosis for fertility reasons. I have having issues with embryos implanting when going through IVF and consultant wanted me to go into chemical menopause to suppress estrogen which would reduce my adenomas. So having zoladex despite wanting a family is something used by fertility clinics and people have had successful pregnancies thereafter.

It did take a little while for my periods to be regular once I had stopped zoladex (I was on it for 6 months) and used HRT during fertility cycles, so just because you have used these meds does not mean it will make having children impossible, might just take a little longer. I found it took another 6 months for my body to regulate itself and get back to normal, naturally. However, I went straight into fertility treatment which is monitored and regulated. However, if trying to conceive naturally it could take longer. I have suffered years with the struggles of having adenomyosis so I know considering coming off your long term medication to help control your endo must be very scary for you, but you have to give your desire a go and if you can't afford fertility treatment privately it might be helpful to see if you qualify for assistance in the meantime while you try naturally.

Sorry I don't have much specific information that may assist you, I just didn't want to read your post and not reply.

[hcromps92 in reply to slinky00]

Thank you so much for taking the time to reply, I really truly appreciate it. I know zoladex is used for people undergoing fertility treatment, I guess I'm just worried generally about all the unknown and dreading an increase in pain and the impact that could have on my life and relationships. But I suppose there's no way to know how it'll go without trying. Thanks again for responding, wishing you all the best.