Zoladex for severe endometriosis

[Spangalow07]

Hello everyone.

I have had a diagnosis of severe endometriosis for a few years now, which makes me very lucky compared to some, but i am really struggling to cope with everything recently. My endometriosis is very severe and my consultant has advised 6 months of Zoladex to try to assist with the pain management whilst I am on the waiting list for extraction surgery. The list is obviously long with covid waiting times etc so this is a last resort to keep me going whilst I wait.

Has anyone else taken Zoladex and have any hints or tips for managing side effects at all?

I feel like such a failure going into the menopause at 32 and having no kids of my own and it is really getting to me. Unfortunately I lost both tubes due to severe adhesions and my ovaries are polycistic and not playing ball, so becoming a mum via ivf is looking really slim too. I just want to feel better and feel like myself again for both my sake and my partners sake, as it is so much to deal with currently and really taking its toll on every day life. The Zoladex sounds really severe and my consultant did warn me it will not be a walk in the park so wanted to reach out for help.

Any help and advice welcomed, thanks so much x

[Lilmuzza]

Hi Hannah sorry to read what you have been going through. I was given Decapeptyl for a few months, I know its a different drug but it really did save me. I also had to take HRT with it as well. I mean yes I had hot flushes but nothing was as bad as without it.

I started on a fertility journey, I've never been able to get pregnant ever. I was so focused on the baby side of things that I was neglecting myself as it's all I've ever wanted. But the more time has gone on I think I just want to be well and not be this ill all the time. Never give up hope I truly believe what's meant will be. I'm not sure if I've helped, but you are most definitely not a failure. Xx

[Spangalow07 in reply to Lilmuzza]

I do feel so poorly that I just want to live a 'normal' life, I joke with my partner i have 1 week a month where I feel well enough to socialise before my cycle starts again - laugh otherwise you will cry! The issue is feeling guilty my partner is almost stuck with me and having to life through infertility because of me.

I know the Zoladex will hp with the one week a month window, hopefully meaning I will not have that issue anymore, but I am concerned for the social implications (feeling like nobody will relate to me as I am so young) and having to explain to my family and friends what is going on.

It is horrible feeling so lost because of this happening to our bodies, never know what to do for the best. X

[Vicky2708]

Hi Hannah, I was diagnosed with severe Endometriosis in 2017. My Consultant wanted me to start zoladex straight after my diagnostic laparoscopy but I refused. I was 29 and he didn't have time to tell me what it would do to my body. After a couple of months, I ended up on zoladex and it gave me my quality of life back. I don't really remember all that many side effects but I don't know if I maybe have rose tinted glasses now looking back. I know this isn't the case for everyone but I feel you read of more horror stories than positive ones. We're all different - hope this helps. If you have any questions, feel free to reach out x

[Spangalow07 in reply to Vicky2708]

Hi Vicky, thanks for taking the time to comment. I am looing forward to getting some quality of life back, I currently function well one week a month and it is really hard to try cram everything into 7 days before I start to feel the effects of my cycle. I am really struggling to get the consultant to write the script and book an appt to have the Zoladex administered at the moment, been waiting a month for the script to be written and as of today the consultant has still not signed it. I find it so hard to remain positive when everything can sometimes seem to be against us whilst dealing with Endometriosis, it is like we have to constantly fight to be heard and cared for properly!x

[Vicky2708 in reply to Spangalow07]

You're welcome anytime. I'm sad to hear that you're struggling to get the script, do you know why this is? If not, it make me worth an ask of their secretary. I can absolutely understand struggling to remain positive but please know you're not alone. Do you have an Endo UK support group local to you? You can find details of UK based groups via endometriosis-uk.org/find-a...

Take care, Vicky x

[patssweetheart]

I only managed 2 rounds of zoladex the joint swelling and pain was to much for me but that may have been because I’m in my 50s Sending 💕

[Chloehawkins_]

I’m 21 and I’m on zoladex - and honestly the first 4 or so months were basically pain free, and couldn’t recommend enough. I’m having a few issues now though (I’m nearly at the end of my course) but they think that might be due to starting me at such a young age etc and possible problems with my ovaries, they are looking to see if this has been caused by the zoladex. Obviously it comes with its side effects but Endo wise, it has mainly been very helpful x