Zoladex experience

[x_b_x]

Hello.I have now had 2 zoladex injections and was wondering what anyone else's experiences have been like whilst on this injection.

Before zoladex I was on decapeptyl but was switched because it was giving me headaches and shortness of breath. To be honest I feel even more shit now.

I am struggling to even describe how I feel but I just do not feel right at all. Headaches again, feel out of it, struggling to breath, leg cramps, just all sorts really.

Just wondering if anyone else has had a negative experience with zoladex?

[Lothead01]

hi

Sorry to hear your feeling worse

I can’t comment on zoladex but I had Prostap recently (just 1 injection) and I’ve never felt so horrible esp mental health.. I plunged into this thick fog of depression which isn’t like me and horrible anxiety. Terrible headaches, insomnia, pain in hands and feet, no appetite. Literally just did not feel like me.. foggy head and zero emotion. It’s been at least 3/4 weeks since the injection would have stopped working and I’m still not 100 percent esp the lingering anxiety but I’m better than I was. . I have no idea how long these injections stay in your system but from others I have spoken too it can take a while because they are pretty strong..

the last few days I’ve been getting niggly pains again in my side where my cyst is etc so who knows what’s going on and when I spoke to a gp whilst in the thick of it all they didn’t really know much about it either.

How long do you have to have injections for??? Some people have said on here the first couple can be pretty brutal but gets better but I can’t tell you if that’s true. These drugs are really strong and affect everyone so differently. :-s

[Sez73]

Just like Lothead01 I was on Prostap not Decapeptyl or Zoladex but I think they all essentially work in the same way and like others have found, in a way to make you feel utterly dreadful. For this to be one of the key treatments available for women struggling with endo/adeno is an absolute travesty as I hear far more negative stories than I do success ones. I was very aware I didn’t want to jump out the frying pan into a fire taking the injections as I felt in such pain already, but instead of easing the pain the injections just brought a raft of additional horrendous side effects some of which you highlight too. Your comment ‘I feel even more shit now’ pretty much sums it up. I appreciate these injections may work for some but I’d be very interested to see percentage success stories!! Every side effect you mention I got too. I felt absolutely grim. Yes, the first injection can cause an additional flare in symptoms as your body tries to go against what the drug is stopping it from doing, but I found no relief on the second or third injection. They drove me eventually to a very dark place mentally which isn’t like me and I couldn’t take them anymore. I stopped after my third injection in March this year and am only beginning to start feeling more normal now so don’t believe so called experts who believe this poison only takes a month to clear your system, I don’t think that is correct at all. Great, if some women find them helpful, but there’s sadly an awful lot is us whose lives are more negatively impacted. I look back on the 3 months I was on those awful injections and can’t even recognise the person I was, nor remember much of that time bar feeling the lowest mentally and physically I’d ever felt. The only ‘helpful’ feedback I got from the consultant was that it was still useful to have tried them as it gave him a clear indication he could not remove my ovaries if I chose to have a hysterectomy due to the severe reactions I had, therefore meaning even having a hysterectomy would not rid me of all pain due to hormone fluctuations still occurring from retaining ovaries. Caught between a rock and a hard place springs to mind! I very much feel for you, I sympathise greatly and suffered exactly the same as you. I remember on a nice day trying to get into the garden to boost myself up and I couldn’t even pick up a small trowel & plant a tiny plant, I felt so fatigued, out of breath, legs aching, sicky hungover feel headaches and truly dreadful and doctors believe this is an acceptable form of treatment for those already using every ounce of mental strength they have. It makes me so angry. I am with you and feel very sorry you’re experiencing this too. I think doctors tend to want you to try more than one because of this known flare after first injection, so if u choose to go for a second, I’d think about things lots of your symptoms don’t improve and revisit the doctor for advice. You’re certainly not the only one this happens to and I think we, as patients, feel this obligation to willingly put ourselves thru this hell as a doctor recommends it. Just because they advice a treatment, it doesn’t mean it’s right for you, so stick to your guns and question if you feel you are going nowhere with it. All the very very best to you, I know how hard it is x

[Rainbow2468]

I'm on prostrap and not having any issues so far x

[Pixie1987]

sorry to hear your feeling rubbish… I was the same… had terrible hot/cold sweats, headaches, joint pain … which I am still suffering from 5 months after stopping and the worst for me was weight gain, which again I can’t seem to shift I was putting on weight weekly and nothing was helping keep it at bay… now I’m really unhappy with my weight

I was changed to decapeptyl but if I’m honest I didn’t really notice much of a difference other than the actual injection being a lot nicer and thinner than the zoladex needle

Hope you feel better soon and don’t have to suffer for too long… please bear in mind that I was on mine for 15 months so hopefully your not on this for too long and won’t suffer from the long term affects that I am

Sending lots of love x

[G3miniStar]

Sorry you're struggling I've had two lots of Zoladex (currently on second round) and those are all normal side effects unfortunately. You can have some forms of HRT whilst on the injections to combat them, I'm on Tibolone and I feel not 100% but better on it. Can you talk to your consultant / endo nurse?

[x_b_x in reply to G3miniStar]

Yeah I am on utrogestan and Estradot, I just feel meh. I was supposed to have a 3 month follow-up which is due round about now, but heard nothing. Tried calling consultants secretary but can't get through. Just got to keep trying.

[Morana]

Hey, hang on there! I had 2 weeks of headaches every other day before the second injection and after that it went away. I know that there are a lot of scary comments about Zoladex around, but my overall experience was great and headaches were my only side effect

[Sunset-lady]

Everyone responds differently as the responses show. Are you on add back HRT? I think zoladex is pretty brutal without it. For some women this drug is a life saver and they stay on it for years and years. For others it seems to take 3 months to settle and for some it never settles and it's an awful experience. I am starting it in January and I've done a lot of reading about it. I agree with the comments here about it being awful that this is the main treatment for endometriosis when it was designed for cancer treatment. Journal your symptoms and try to do everything else healthily if you can. Walk a lot and take supplements or try acupuncture. Sorry if that sounds patronising when you say you're exhausted. Eat a healthy diet if you can. Good luck and let us know how you get on.