Anyone else experienced this?

Hi, so I had injection number 3 of zoladex about two weeks ago and my menopausal symptoms are only now kicking in. I mean, I'm getting hot flushes, so many hot flushes. But that's not what I wanted to ask. Has anyone here experienced joint pain just in the knees since being on zoladex, and should I be concerned? Also I have a small eczema-type rash on my biceps and thighs since starting the course, could that too be related or just coincidence? The waiting list to see my Dr is about a month so getting to see him is not easy and the triage would only tell me to book an appt with my dr and so it'd just be a nightmare. Has anyone here had anything like this before? Thanks :)

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  • Hi there, I haven't had Zoladex, but I have had Microgynon and with this terrible eczema, pain and Migraine. My naturopath always says what is in the outside is also on the inside. I switched to Cerazette and my skin is much better, no more itching and only a little dry,but that's because I clean out Rabbits all day. ;0))

    Still waiting for the Cerazette to be effective with the Endo and Adenomyosis though, just had the most painful period which apparently I am not supposed to have at all. :0(

    Take good care of yourself and don't let the itchy eczema go on too long it is miserable, you have my sympathy.

    Good luck

    Jen xx

  • Could you ring the surgery and ask for an emergency appointment? Or INSIST you have to speak to your doctor urgently and get him to call you. At my surgery you can ask for an emergency appointment, or ask for your doctor to ring you. When I rang my doctor last week he was worried about my symptoms post op and thought I might have an infection and told me to come up to the surgery immediately for an examination. He said, "I'll fit you in. Don't worry." I've even had a doctor come in early for me because I told her I was freaking out with the pain. Surely my surgery can't be the only surgery that put the patients first? Seriously, if your surgery are this bad and you can't even get an emergency appointment with your GP I think a) you should complain or b) find a new doctor. Good luck getting the medical help you deserve. xx

  • I had knee pain especially when I bent down on Prostap but it passes as the injection wore off x

  • You can get joint and bone pain as a side effect of Zoladex. I had pain in my cocyx which made it hard to sit down!

    I wouldn't be surprised if your rash is caused by it too. In fact I just googled it and mild rash comes up as a possible side effect.

  • Hi! When I was on Zoladex I got terrible joint aches. It felt like the aching you get when you have the Flu. x

  • Thank you for all your answers! My GP's don't do emergency appointments with my specific doctor, just whoever is on triage. Or that is what they keep telling me. Its a shame as my actual doctor is brilliant, the practice just sucks. Does the knee pain wear off after you've finished the zoladex? Also, about the bone loss, does it happen to everyone who takes the zoladex without HRT, and can your bone regrow its thickness given time and the correct nutrients? I'm just concerned as I have significant bone loss in my mouth due to having had a operation on my mouth followed by 5 years braces. My teeth are already wobbly to the point where I will lose some in the near future, so I'm worried this will make them worse and/or prevent me getting implant teeth due to lack of bone thickness. I will, if I have to, stop the zoladex to save my teeth. I'm 20, I do not want dentures. Emz88, I'm so sorry you have it so badly :( What other treatment have they offered you? Was it 3 months by the doctors orders or because you couldn't cope with the side affects? So far a little improvement on the pain but I think that is more to do with coming off the pill than with the actual zoladex itself. I may be wrong. I have had a few side affects, namely hot flushes, a weird rash, more hot flushes, achey knees, chronic nightmares and spottier skin. I hope I don't get anything worse. Three down, three to go...

  • Firstly it has only been almost 2 weeks since i stopped the zoladex (was due 4th jab on 20th March), so i doubt my knee pain will stop that quickly, lol. I don't want to scare u, but i was given the zoladex straight after an emergency laparotomy just before xmas (by the hospital) without being given any choice of treatments...let alone them going thru side effects, pros & cons! So yep pretty traumatised, as i was only diagnosed with stage 4 endo, after the hospital surgeon cut me open (with intention of removing cysts), but was shocked to find all the severe endo & said it was too dangerous for her to remove my cysts, so only drained them instead (reality is she wasn't a endo specialist surgeon, so was not skilled enough). Didn't know i had stage 4 endo when i was admitted to hospital, but they did know i had 2 x 10cm+ cysts & had mentioned to them that gynae said i had endo (just not sure what stage it was). When i had a follow up appt (2weeks after emergency op) with a generalist gynae she said it was a 3mths zoladex treatment & then told me my insides were all stuck together (frozen pelvis). This shocked me so badly that i suddenly realised i hardly knew anything about stage 4 of this disease, as i had only read the basics on websites like the NHS, but they never mention anything like your organs/insides getting stuck/fused together!

    Anyway, i think its important for us endo ladies to get clued up & understand more about our condition. Endometriosis UK is a good starting point, so is endometriosis.org, but i've found endopaedia to be really educational (if u really want to know the hard truths & full facts of severe endo). I also joined EndoMetropolis, which is a great facebk group (please bear in mind this group is not for chit chatting, ranting or raving), its an educational group, where endo sufferers ask Qs relating to their endo & the amazing thing is that quite a few well known/famous endo specialists in the States like Dr Dulemba, Dr Andrew Cook, Dr Ken Sinervo & Dr David Redwine are on hand to answer our Qs & provide help/advice as they are part of this specially set up endo help group. The creator of the group Libby is from the UK & has stage 4 endo herself. She is a great lady & very passionate about raising awareness of endo. She even contacted Dr Redwine when he retired to set up the 'Endopaedia' website as well as the EndoMetropolis group to help us endo ladies out.

    It was only thru reading stuff on that website & thru chatting to the endo specialists in that group that i suddenly realised that i needed a endo specialist consultant & not the generalist gynae the hospital had provided me with! So found myself a endo specialist in my area. Am due to have my first keyhole lap with him next week, so fingers crossed he will be able to remove my large cysts, separate my fused insides & remove alot of the deep infiltrative endo.

    Does your endo specialist do excisional surgery? As EXCISION really is the best treatment for endo! I am 34, been suffering since i was 12yrs old, yet only got diagnosed when it was too late. If i had been diagnosed when i was younger i would def have agreed to excisional surgery to prevent my stage 1 from developing into stage 4. GnRH drugs & other hormonal drugs only supress the symptoms & pains... once u stop taking them u will only be in pain again as they don't actually get rid of the endo! But many specialists will give u them to help with the pains till u have an op.

    Sorry for the essay, but ladies, please educate yourselves as knowledge is power. I found it great being able to actually have an intellectual conversation with my GP & endo consultant & being able to understand what they were referring to when saying things like superficial endo (less than 5mm) & deep endo, rather than sitting there clueless wondering what they were on about in the past. Its also handy to stop u from being fobbed off, we have to really stand up for ourselves! I was fobbed off for 22 yrs about my pains & misdiagnosed countless times. So please educate yourselves to prevent doctors from fobbing u off xx

  • Forgot to say that everybody is different. For some ladies it takes over 6mths for their periods to return after taking the last zoladex jab. But for some their periods return within 2-3 mths. So there is no set time for when side effects will stop exactly. But according to some of the US specialists it usually takes around 3 mths for the zoladex to completely leave ur system

  • Thank you for your reply! I'm so sorry you've been treated so poorly and given so little clue into your condition! I'll definitely check out some of the websites you mentioned. I only have stage one and the gynae said they cannot excise the small bits, (which are scattered throughout my pelvic area, on my abdominal walls, ovaries and over my ureters up near my kidneys) especially not as excising the bits over my ureters would cause the pipes to burst and me to urinate into my abdominal cavity. Is it possible to remove the small bits if you have a skilled enough surgeon? I'm not going to lie the knee pain is more debilitating than the endo and I don't think I will be continuing my course of zoladex as its making me unable to work. And if it makes the bone loss in my mouth worse I definitely will not be continuing. I was told by my gynae that as my endo is only stage it'll shrivel up the lesions so they no longer exist. Are they feeding me false hope? After I have finished the zoladex I will be having a mirena coil inserted, have you had any experience of this? Good luck with your operation, I will be thinking of you x

  • Nope haven't had the mirena coil. But if my specialist offered it to me i wouldn't take it as i hope to start ttc at the beginning of nx yr. Its just the same with anything some ppl have had bad experiences with the mirena coil, but some have had good experiences. Thats why its important not to rush into agreeing to anything ur specialist/gynae offers u straightaway. U can always say to them to please give u a week or two to think about it, then ask other endo ladies both on here & EndoMetropolis for their experiences (as well as the endo specialists themselves for their views, as well as pros & cons) to help u decide.

  • I'm not surprised they are sore! Wow so much surgery... You really think he would have saved time and money my just doing it all in one. But there we are, that's the NHS for you isn't it. No my gynae isn't a specialist and they simply told me all they would do, if they could, was burn off the lesions. No mention of cutting them out and apparently mine cannot be removed as they're too small and most of it is over my ureters so removing them would also damage my pipes and its too risky?

    Frankly I think my gynae has bullshitted about a lot of things, which is really worrying as I have to go back as my GP thinks I have a cervical prolapse and I don't want to be fobbed off with "do pelvic floor exercises" as I did them for MONTHS thinking it could help ease my endo pains. (it didn't.) Don't suppose you know anything about cervical prolapses? I don't want the mirena coil either, it sounds awful. I don't think I'm going to be able to continue my zoladex treatment due to knee pains and other horrible side affects and I don't really know what my options are. I hate this disease, I am so bloody sick of it.

  • I've recently had my lap & I had severe endo in many places including both my ureters which were 'plastered' and both stuck down apparently. I researched loads before choosing my specialist bc I knew I had severe endo & would need a skilled surgeon. Anyway he was more than capeable of dealing with all my areas of endo including my ureters so it sounds like your surgeon is saying its not possible to remove based on his skill rather than on whether it is possible generally. My consultant is in Manchester. If you would like details pm me. Best of luck xx

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