Terrified of Zoladex

I'm a 32 year old lady, who thanks the heavens for her two boys, especially now I know how unlikely it was for me to conceive them! After a year of life threatening kidney infections and other complications, eventually I was diagnosed with endometriosis five years ago via laparoscopy and had laser surgery to remove adhesions at the same time. My gynae was more a fertility gynae than anything else, and after the op told me there were some bits on my bowel he didn't remove as they were too tricky but not to worry too much about it. I then moved house, my GP (only now confesses) lost my medical records and so thus no follow up and I fell out of the system. I was pretty new and naive to it all at the time though and didn't really take on board how serious endo is.

I was fine for the first couple of years. Then slowly symptoms started to return. although initially I didn't link them to endo. Urine infections, gastritis, manic depression the week before my period, chronic fatigue, low immunity and every cough and cold going, and horrendous period pain. It was October last year my new gp suggested the endo had returned. And then things went violently down hill. I couldn't work and was having crippling pain even mid cycle. The drugs went from ibuprofen to codeine to tramadol and then I have spent the last three months on morphine.

I eventually had my 2nd laparoscopy last week and I haven't been able to get out of bed since. My entire abdomen was smothered in it and every single organ too. So my insides have had a good messing with. He also diagnosed Adenomyosis.

I can't take artificial hormones as they give me a plethora of nasty side effects. And I can't have the mirena coil as I had a copper one fitted some time ago and my body expelled it. My gynae said this only really leaves hysterectomy as a treatment option. However, he wants to try me on zoladex for six months first. I really don't like the idea of it. Not one bit. I've done a good amount of research on it, which is what brought me to Health Unlocked. It seems like such an evil, toxic drug with horrific side effects.

What treatments have you ladies tried? Or had recommended? Or have you had zoladex? And did it help you?

Thanks so much for your help.

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4 Replies

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  • Hi there

    You are right test zoladex dan come with some pretty awful side effects

    But do remember all drugs effect different popple in different ways

    All I can say from my experienced is that zoladex changed my life for better the pain within a few weeks stopped .......I do suffer with hot flashes and fatigue but are nothing compared to the PaIn I was experiencing even after several surgeries

    It's a big descion to make maybe give them a go for a while if it doesn't agree then stop but only you should make that choice best of luck

  • I have just commented on another thread as felt I had similar things in common but I think we have almost have the same diagnosis.

    I am 34 and blessed with twin girls but am struggling with stage 4 endo and other issues. I had my lap in Dec and I am now on Zoladex -with add back therapy (just had my 4th injection), next month I will have my consultant appointment to go through my hysterectomy and discuss my options and complications I may have.

    I didn't really think about taking Zoladex I just did what I thought was needed for the surgery and getting through the next couple of months. I have found my extreme pain has almost gone but I really struggle day to day with fatigue and aching joints. However, I feel I am managing it and it feels more controllable than before Zoladex.

    I know there are horror stories on here and the list of possible side effects are as long as your arm but like one of the nurses said to me if you don't get on with it, you stop taking it. My advice is to give it a go if your consultant thinks this is the best next step.

    Good luck and please let me know how it all goes for you.

    Emma

  • Thank you Emma. It's so reassuring to talk to someone else going through it. I'm just so fed up with it. I don't even wanna think about any of it anymore. I feel like this wretched disease has swallowed up my whole life and I just want to get to the end. Sadly, I know that, it can and will be controlled and more manageable in the future, but it will never end. I sometimes look down at my belly button and ask my uterus "I hey have you done this to me"? And I feel mournful at the thought of a hysterectomy, like a small part of my femininity is being taken away. But at the end of the day I'll just be glad to get to the day when it doesn't rule my life anymore. And I know that day will be soon.

    Thank you for your kind response. It means a lot to me.

    Emily x

  • Emily, it really feels unfair sometimes doesn't it and I agree about the hysterectomy, I also feel hard to tell people I'm having it done for some reason.

    Please let know what you decide and how everything goes.

    Emma x

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