Sore joints on zoladex? Is this normal??

[sbactive]

Hi all

Gosh, I can't get out of bed anymore without looking like an old woman, I'm 42 and used to run, gym, pilates etc. and be quite fit, after four zoladex injections I've gained a stone, my joint ache so much I can't move for a good hour in the morning and don't ask me to do anything after six in the evening, and none one pair or trousers fit due to spare tire round my middle. Arghhhhh!!! They want to keep me on this injection indefinitely, I'm not sure I can cope with that. Not sure I'm coping with all this! People just seem to think I'm making it up or it can't be as bad as I'm making it out to be, I've just stopped even bothering to,talk about it.

I have a great partner but he has his needs and although he's understanding I just feel I'm denying him, and myself for that matter!!

This sucks.

Sorry for the rant I'm just about at the end of my tether.

[Hidden]

Hello..... I'm sorry to hear about your suffering. X

I had my one and only injection of decapeptyl (GNRH drug similar to Zoldex) earlier this year ! The first two weeks were ok and then I started to get severe side effects. These included hot flushes, bone pain and migraines. These side effects were worse than the endometriosis and I refused to have the second injection.

All of the GNRH drugs have serious short term side effects and long term complications. Even with HRT these drugs are extremely powerful.

The drugs do not cure endometriosis but only puts it to "sleep" for a while. When you stop treatment the Endo will "awaken" and cause trouble again. So for me the serious side effects were not worth any short term relief I got from my Endo symptoms.

I am 43 and have had Endo for 22 years. I also have adenomyosis and have now decided to have a hysterectomy and my endometriosis excised. The hysterectomy will not cure the Endo but it will cure me of the adenomyosis.

What other treaents have you tried?

Are you being seen by an Endo specialist? since joining this forum, I have become to realise that the best treatment for Endo is surgical excision.

Best wishes,

Barbara

[nikki297 in reply to Hidden]

Hi

I am so glad I read this post. It is me! I also want to stop decapeptyl as I get terrible migraines that are more debilitating than pain before. I have suffered with endo for many years. Had surgery took drugs and had a period of remission in my 30's. it is now back plus adenomyosis. When you say hysterectomy do you mean everything? Are you having endo treatment at the same time? I feel like I may have to go for everything if I make that decision as I think a lot of my pain comes from constant cysts in my ovaries on top of pain caused by adenomyosis. I'm actually pretty scared about this decision but I do feel like I've had enough. I'm the same age as you! I was hoping for remission again and surgery and drugs worked for me before. Not this time which makes me think adenomyosis is the main culprit for the pain but I really don't know. Any advice would be welcomed.

[Impatient]

I was on zoladex - lasting only 4 months of hell before that was more than enough for me. And yes painful joints, muscles, veins, bones all very much what i experienced among a huge number of side effects on zoladex.

My advice is give up the zoladex. it is meant to be an attempt to improve your quality of life not make it worse, so when you have had a bad reaction there's no benefit at all to staying on the drug and risking even worse side effects as the loss of hormones takes effect in so many different ways in the weeks ahead. It is a ghastly trip for many of us and the very best course of action is to stop and allow your body to recover in the weeks afterwards.

Trouble with this drugs is they shut down so many hormones when really we endo ladies only need one or two to be stopped so our periods and endo have a pause.

The rest of the hormones we need for normal bodily functions are best not tampered with. It's like taking a sledge hammer to crack a peanut.

the pains can come and go, some days were much worse than others and bed rest was the answer for me when the pains came on. Pain Killers didn't seem to do much ..sadly!

[sbactive]

Thank you for your replies, yes Impatient the days are either good or bad, they seem to be bad on a worsening scale however! My cysts and endo are not treatable by excision surgery or any surgery due to previous abdominal ops, I am starting to look at other natural treatments but these are all generally costly as as work is near impossible as I am a sports mass age therapist and pilates instructor money is in short supply! I feel really stuck and hate going to the gp all the time as they just tell me the only thing I can do is take more painkillers and why can't I work? It's not that bad surely.... I have been offered counselling! Hmm, not very helpful.

I am rally at my wits end, I want so much to research and find alternatives but my brain seems to not work properly now either and I find myself forgetting the smallest of things. My mother gave me a few little notepads for my handbag bless her.

There is a lot of 'I' s in this and apologies, I should and probable could say 'we' as it seems there are a lot of us in this position.

Barbara and Nikki I hope the surgery works for you, sadly no one will operate on me as it is too hazardous. I'm considering stopping the injections and seeing again how bad the endo feels, given the painkillers I am on and still having pain this may not work... Targinact twice per day, gabapentin three times, amitryptiline before bed and top ups of paracetamol. Problem is, what are these all doing to my other organs!!!!

Phew, maybe it's worth a try... I hope we all get relief, and soon, take care

Steph x

[Bokkie]

Hi sbactive, YES, YES AND YES to all your symptoms. I was on Zoladex for 6 months last year and had exactly the same. I am still battling to get rid of the huge spare tyre around my middle and other weight gain but it all seems to be here to stay....My joint pains also started whilst on Zoladex. I then went onto Depo-Provera jabs which just exacerbated the problems even more. I am 48 and it's as if my joints are 80! I am currently waiting for a bone scan. I am on no treatment at all now for my stage 4 Endo and Adenomyosis. Since stopping all treatment 4 months ago I have actually had less Endo and Adenomyosis pain than I had whilst I was on it! I think I must be a rare case there though as I haven't heard of that happening before. I am making the most of that at the moment in case it comes back again. I am currently taking 20ml Floradix Saludynam medicine (is a liquid calcium, magnesium, zinc and vitamin D formula; 50% herbal extracts) twice daily and 2 sprays a day of DLUX 3000 daily vitamin D oral spray for my bones and joints. Got both in Tesco Chemist. The Tesco nutritionist and pharmacist recommended them for my Endo related bone problems. Been on these for 3 weeks now and have definitely got less joint aching and pain. Might be worth you giving it try??? Good luck! xxxx