Zoladex

Hi I have just started a 3 month course of Zoladex implants.

I was diagnosed recently with Endo (not told stage etc..) I was 'told' to have the implants and then see the gyny in December. (I also have PCOS which was diagnosed 13 yrs ago).

After a while of deliberation (really felt uncomfortable about the course of action) and symptoms that appear to be worsening I decided I needed to give it a shot (pardon the pun).

I had the first implant injected on Monday and have been keeping a journal of how I feel. (Doesn't help that I currently have labyrinthitis).

I have had very restless nights and last night was the worse. I'm being woken by alot of discomfort in my hips/pelvis/bum that appears to radiate down my legs. I'm also getting numb legs/pins and needles.

Has anyone else had these symptoms?

xoxo

9 Replies

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  • Hello,

    I also had labyrinth it's when first got the worst of my symptoms so I feel for you.

    Do you know how Zoladex works? It shuts down your pituatry gland to put you into a pseudo menopause.

    It creates a flare/rise of symptoms initially before things calm down. The first month is usually the worst for side effects. There are lots of side effects to be had, I had nearly all of them and they can make life quite tough.

    I don't regret going on them as it temporarily improved by symptoms but I got stuck in the menopause for 16 months as a result. I'm lucky as my periods have now returned but I know if you have other conditions such as pcos the chance of being stuck in menopause is more likely. I don't know your age so you may be ok with this and I don't want to scare you, but drs aren't very good at telling us everything. Please do your research and speak to Gynae before your next implant to insure they know you have pcos-I'm sure they do and any concerns you may have on Zoladex impacting your fertility.

    It can also cause osteoporosis so you should be on hrt or supplements to help you through the side effects. Please google the manufacturers instructions for Zoladex which goes through side effects.

    Numbness may be a side effect but can also indicate other serious conditions so I suggest to get checked out by your GP today.

    Sorry once again do not want to scare you, I actually found Zoladex helped me a lot but I made an informed decision after looking at the risks, it doesn't sound like your Gynae gave you this chance.

    Also when you stop Zoladex it's likely over time your symptoms will return, so the best treatment is excision surgery by an Endo specialist.

    Contact your consultants secretary to request your notes so you know. The severity and location etc.

    Good luckx

  • Thank you for your reply,

    I am 37yrs old. I've had many years of infertility (including 2 mc's and 3 x ivf attempts).

    A doctor came to speak to me straight after the diagnostic lap. I was not really all with it to be honest. She told me I have endo and need to see the gp for zoladex injections, then see the gyny in December. (3 months from lap).

    The Gp had no more info than me and advised me that if I didn't follow the hierarchy of treatment then the hospital would refuse to treat me.

    I've had many scans over the years that have shown the pcos so it's definitely there.

    I had started to see a nutritionist to try a more holistic approach but the worsening symptoms and the worry of not being able to be treated at the hospital, should I decide to go down that route at a later date put me off.

    My husband and I have been trying to have a baby for about 13 years (on and off). We have 3 beautiful adopted children and would like to complete our family with a new born.

    So we figured that the short term of the increased symptoms would be outweighed by the possibility of conceiving after the treatment.

    We were not aware of the potential continued menopause.

    My GP said they'd give me HRT if the symptoms showed I required it.

    I did do some internet research but that's all of the help we've had.

    The numbness has not continued. It is just through out the night when I'm off my legs. My legs/feet ache now but I think this is as a result of my hips/pelvis aching.

    xoxo

  • Lotsi the drug is toxic for a pregnancy and is anti-contraceptive so you absolutely must do all possible to avoid getting pregnant while on the drug. Use of barriers is essential - like condoms or diaphragm, use of lubricant is needed too as the drug shuts down your natural vaginal moisturisation process and sinks the libido to zero too.

    The traces of the drug can remain in the body for 4 months after a monthly dose, so even when you do stop the drug you still have a further 12 weeks of needing to use condoms before resuming TTC duties.

    I know there are some NHS leaflets that say you can start having sex right after stopping - but that is in direct contrast to the manufacturers own research, and with something so precious as a longed for baby - don't take any risks of another miscarriage or severely deforemd baby due to exposing the foetus to the drug. It is the last thing you want to have on your conscious if you can help it.

    The drug shuts down a baby's pituitary too - right when it is critical and producing growth hormones. Hence the safety advice with using the drug.

    Have a read of a previous post

    healthunlocked.com/endometr...

    Definitely a great idea to keep a diary - as one of the side effects is loss of short term memory function and in one respect it is better to forget the bad stuff - but on the other hand it is very frustrating not remembering things. Sadly the zoladex left me with long term loss of short term memory function and it is very debilitating and certainly not anything I was expecting to have to put up with still 3 years later.

    The risks with these drugs are down played by the doctors and the manufacturers. As Lillil said these drugs are not a cure, don't kill the endo cells off - just a stop gap to having what you really need for endo which is a decent surgeon - removing all existing endo cells.

    The patient info leaflet is available as a pdf free online on

    medicines.org.uk/emc/medici...

    but also read through that 1st website I mentioned on the previous post as there are different tabs for

    Overview of the drug, drug interactions, side effects and pregnancy warnings too, also read the 'for professionals' part as some of that will make things clearer to you about how the drug works with a super long list of reported side effects from the clinical trials bit further down the page. All useful data to be aware of.

  • I had 3 zoladex injections at the start of this year. I had the pins and needles and the aching bum, legs and back my back got so bad I was referred to physio but they said they didn't think it was anything they could help with, anyway that went a few weeks after stopping zoladex. It really didn't agree with me, I had insomnia, extreme night sweats and the back pain was awful oh and headaches well more like migraines that I've never had before. Doc gave me amitriptyline to help me sleep and they did helped.

    Some ladies on here swear by zoladex and other gnrh but I really didnt like it. I also had sickness. I'm not really selling it to you am I ha. Just wanted to share my experience so you know that any of them symptoms are probably caused by the zoladex. Are you taking any pain meds for the pain? X

  • Thank you for your reply. Having feedback from ladies that have taken it is invaluable. I shall see how this month goes and then perhaps reconsider.

    I'm not taking any pain meds.

    What form of treatment are you now on?

    xoxo

  • I've just changed consultants hun so waiting for excision surgery for endo and bladder and bowel. I had a diagnosis lap in may 2013 and had the endo burnt but been in so much pain since that. I've tried the zoladex and hated that. I have tried the implant which made me bleed constant and the contraceptive pill all bring me out in a rash all over my face and body so I'm allergic to that and can't take it. My last consultant said they couldn't help me anymore and id be stuck on these pain relief forever. I was so upset as I use to only get pain when it was that time of the month but whatever they have done to me had caused constant pain. I have recently paid private to see a consultant and he is going to.do excision surgery instead of burning it and he said once removed it will never grow back in the same spot again. Obviously it can grow back but not were he has removed it. So for now I take 10/500 co-dydramol and when I need something stronger I take 30/500 co-dydramol and if they dont help I take tramadol but I end up in bed for days when i take tramadol, unable to eat or sleep for days so i do try to aviod them, also I take amitriptyline every day to help me sleep, buccal tablets to help with the constant sickness feeling from meds and omeprazole think they are for heartburn from tablets and diclofenec which is a anti inflammatory. Sorry for huge reply I'm a chatter box of the tramadol xx

  • Gosh that's alot of meds!!

    Is it very expensive to go private? I have wondered about this. We went private when we had IVF. It was nice feeling like a human and not a number.

    I am going to try to go to yoga this evening. I've not been for months and hoping it'll help. I do have regular shiatsu also, that is great.

    I can't take co-codamol as it makes me very poorly even on a low dose.

    xoxo

  • I only paid for the consultant hun and that was 225 pound. I could of seen him on the nhs but it was over 14 weeks wait so i paid private and had to wait 4 weeks to see him private but better than 14+ I suppose. He is doing the op on the nhs though so it's not to bad. I think the ops cost alot to go private.

    Have fun at yoga. Good to stay a little active if you can. Not sure what pain meds you could take that are stronger than paracetamol if you can't take the co-codamol hun apart from tramadol. Hope you feel better soon. Let me know how you get on with the zoladex, it's different for everyone and some people say it calms down after a month so fingers crossed xx

  • I have read the other comments and whilst there are a lot of people on here that have horrendous side effects with zoladex I have found that I have only had occasional hot flashes. I have just had my third and final injection (I'm having a hysterectomy next month). I have found that I have more energy, no pain and generally feeling tons better with the injections. I never kept a diary, I don't think I could manage that so whether I would have scrutinised things differently had I been writing stuff down I don't know! I was super scared of having the injections and really panicked over having them at all - initially I refused them and was in tears about it before I had the first one. In hindsight I wish I had just gone ahead with them earlier in the year - I might have been able to have more children if I had as I was told one ovary was ok but after 7 months i was told I couldn't and ivf would never work (not that I wanted it). good luck with everything and I hope you manage ok on the zoladex x

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