zoladex injections? Hysterectomy? Any ex... - Endometriosis UK

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zoladex injections? Hysterectomy? Any experiences really appreciated..

Heartof3 profile image
14 Replies

so i have atleast a years wait for a hysterectomy, i can't stand this life ruling pain anymore. My specialist said i could try zoladex injection whilst I'm waiting?

I'm so sensitive to side effects & hormones , and there seems to be alot with zoladex , let alone hysterectomy 😖

after years of pain & trying everything,i just don't know what to do for the best anymore 😞

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Heartof3
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14 Replies
Jennylar profile image
Jennylar

Hiya, i’m just finishing my 11th month of zoladex and told I have to have a break. Its brilliant, just make sure they also give you tibolone to stop the hot flushes and side effects of menopause. I’ve found it a Godsend. I think people who dont get on with it dont take tibolone or they take normal HRT which has its own set of problems with moods etc. tibolone is different, it makes your own body produce what it needs as its broken down by your liver, rather than giving you synthetic hormones.

Heartof3 profile image
Heartof3 in reply toJennylar

Thank you so much for your brilliant advice. I will ask my specialist about that.Did you not get sny symptoms from using tibolone? X

Jennylar profile image
Jennylar in reply toHeartof3

To be honest I go nuts from synthetic hormones, get oily skin, spots, mood swings and put a few stone on too but with Tibolone i’ve had none of that, I’ve only put about 4lbs on but I can tell its water weight because if I take water tablets it comes off and is just on my belly. Although I dont know if its the tibolone or the zoladex that causes it. Mentally feel great though, better than I ever have. Toward the last month or two I have been feeling achy and sore back and joints but thats again, because of the zoladex and early menopause symptoms which is why I have to have a break. They said with menopause/chemical menopause when under 55 your at risk of osteoporosis so have to have a few months break.

CJJA profile image
CJJA in reply toJennylar

so helpful after just being told its too dangerous for me to have another bowel resection and hysterectomy so they want to keep me on zolodex for a long time. Im 42 so they hope that I will start menopause when I come off and that will help with endo. Just had implant 2 and my night sweats are manageable but defo going to ask about Tibolone as worried about oesteoperosis. Thanks so much :)

CJJA profile image
CJJA in reply toJennylar

Oh also can you keep us informed if the endo pains come back whilst your off it?

Pureunicorn profile image
Pureunicorn

Hi Heartof3,

I cant comment on zoladex injections as I was on decapeptyl but I did take and still do take tibolone HRT, I had my hysterectomy in March after a 2 year wait and at the moment I can honestly say it's the best thing I've done, I've not had a single painkiller since 4 weeks after my surgery and I've nearer felt so good, I know it's still early days and it's not the same for everyone but I can only tell u about my experience, I did try other things before the decapepty injections but nothing helped. Good luck and hope it all works out for u x

Heartof3 profile image
Heartof3 in reply toPureunicorn

Ah that's amazing! So pleased for you.I am on the wait list for a hysterectomy, 2 months & counting! Think i have along wait on the NHS!?

Thank you so much for your reply x

Pureunicorn profile image
Pureunicorn in reply toHeartof3

One thing my specialist said to me was if the decapeptyl injections worked then the hysterectomy should too. Good luck with whatever u choose to do xx

Heartof3 profile image
Heartof3 in reply toPureunicorn

That makes sense actually.Aww Thank you ❣

Bassem1979 profile image
Bassem1979

It’s good to hear when people have good experiences, but am due to have my 3rd injection but considering if I should stop… to be honest my side effects have been quite good in comparison to some but am losing my hair quite bad which sounds quite vain but it’s really getting me down to the point where I don’t want to go to work or go out. I ve had hair extensions to make it thinker but because my hair falling out that much you can now see and feel the extensions and I ve not had them in 2 weeks yet. If I carry on with the injections by the time I get my op I will have no hair left and the longer I go on it might cause permanent damage and not grow back. I am only 43. Please advise.

Heartof3 profile image
Heartof3 in reply toBassem1979

Ahh i litrally just replied to your post 💖 my inbox is always open if you want a chat.Xx

Endosis22 profile image
Endosis22

I understand wjat your going through I just took zoladex a week ago after having bad cyclic pelvic pain, my endometrial ablation failed and I just gad it done 4 months ago. I xanr here looking for answers , the pain subsided but now im anxious irritable and hace really bad nausea. Hoping someone has answers here

Heartof3 profile image
Heartof3

ah bless u. Sorry to hear your struggling, i feel your pain. It's a constant battle isn't it.

Hopfully someone can help u x

Kmc2018 profile image
Kmc2018

Heyyy I was on it for 6months. Zoladex and HRT, It all depends on your body. Hrt and zoladex cause me a few problem but these where minor. But each person is different I would 100% say try it for yourself but keep an eye on symptoms. Make sure to get you bloods checked during it for iron, folic and b12. X

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