Zoladex, any tips?

[ladyixie]

I'm about to start a course of the zoladex injections - has anyone got any tips?

[Impatient]

My Tip: Don't start it !!

it was so bad i haven't a good word to say on any aspect of it, as regards my own experience.

[ladyixie in reply to Impatient]

Thanks, can you give me any examples of how it didn't help?

[Impatient in reply to ladyixie]

Well I didn't even know what it was or would do to me when 1st implanted which wasn't a great start. The nurse came up to me just as I was coming round from anaesthtic after a laparotomy and told me to lift my gown and in went the implant.

Having had countless injections in all sorts of places - I assumed it was a pain killer - I mean a real one.

When I was discharged a few days later the letter stated I had been started on zoladex and should continue for 4 months.

So there's a combination of recovering from extensive surgery and trying to do battle with zoladex at the same time.

I have every side effect listed barring erectile disfunction of course. Not all at the same time continuous - but there was always a few happening and on bad occasions 8 or 9 side effects hitting at the same time.

I carried on - partly because I really by that stage was in no state to read up on the drug or what it did - other than the patient advice leaflet. and I stupidly believed that my surgeon would know what was best for me and not give me anything noxious. How wrong was I.

It's been 2.5 years - I still have side effects long after stopping the drug. The worst is loss of short term memory function - which is not as bad as it was while on the drug but is debilitatingly poor. It's not that things can jog my memory like they used to do, but that i have zero memory of what people have asked me to do, or instructions they have given me - or why i was in the car driving, or what my destination is - or what i need to get from the shops. Silly things you would take for granted each and every day - I cannot trust myself at all to remember.

I have great long term memory - everything before the drug is hunky dory and rely on that a lot but if i meet new people i won't remember them in 30 minutes time.

The side effects had me shutting myself in my bedroom for weeks and weeks. I couldn't remember if i had eaten or what i had eaten - mum took over making sure i ate meals regularly.

I would wake up with blurred vision - thus unable to drive or watch tv or do needlecrafts or anything much at all till the vision corrected itself.

I was feeling sick, upset tummy, dreadful pains in bones veins muscles, heart palpitations leading to a few panic attacks, hallucinations, sleep deprivation from the hot flushes which were 5-6 an hour every day and night. i did get used to those - they were one the least of my problems. Lost about 1/3rd of my head hair and most of my body hair.

After stopping the drug and the things started growing they have been in overdrive ever since. I have to remove excess facial hair and trim my eyebrows every other day.

Then there was the underskin tingles like ants crawling all over under the skin, oh an the depression and shockingly bad temper - worst teenage temper tantrums that i ever had as a teen, and my mum bless her realised pretty quickly that the drug was having such a profound effect on my health that she went to my GP to discuss it and came away with a 10 year old booklet from the drug manufacturer Astra Zenica which advised that a hysterectomy would cure endometriosis.

My anger outbursts were so scary and I had no control over them at all, other than to keep myself away from other people for fear of being physically violent towards them.

I am so not the person i became on the drug. My other doesn't tolerate swearing - i hardly ever ever swear in her presence - but i was so frustrated and unwell that i really was turning the air blue.

That's just the tip of the iceberg - quite honestly is was without question the worst medical experience of my life. And i have a colourful medical history behind me with kidney problems and gall bladder and all sorts stemming from internal deformities in the womb.

It doesn't kill of or cure or prevent you having endo - it can only be taken for 6 months in your life time because it is so toxic to the human body that the manufacturers will not recommendits use beyond that.

It works by shutting down the pitutary gland in the brain - all the side effects actually stem from the shutting down of this super gland - the most important in the body which is a hormone factory or rather a series of hormone factories.

These hormones which are no longer being produced are the ones you need for temperature regulation, metabolism, heart rate , blood pressure, memory, mood, bone growth, ovarian function, thyroid function and so on. Without it working the impact on so many body functions can be sent absolutely haywire....and it is completely unnecessary to do that.

All you want to do is stop periods and stop endo bleeding causing pain. It's like taking the worlds biggest sledge hammer to crush a few lentils.

Oh also the dried up skin and vagina, zero sex drive/libido, headaches to migraines, dizzy spells, the countless amounts of clothing and bedding washes due to the hot flushes and every hotflush if followed by cold chills that nothing seems to warm you up. Just flitting from one extreme to the other in a constant battle.

Apparantly if yo have fibroids then starving them of hormones does reduce their size and make surgery easier - if you have hormone related cancers of the prostate or breast then the drug can assist in holding back the growth of those cancer tumours - so for some people there are benefits, but for me - all things considered - and i have considered all things, I woud have been so much better just being left to have my periods after the op. Those horrid and painful periods I had already been coping with for 30 odd years. So long as I had suitably strong pain killers to take as and when required if required. Instead of the 24hr a day hell for over 4 months that i did end up with.

Partly my own fault for not quitting sooner and not doing my homework sooner, but knowing everything i now know about the drug - i don't think it should ever be used for endo, not just zoladex but all the GnRH drugs which act the same way to shut down the pituitary and i the process cause so much collateral damage.

none of us knows how our bodies will cope or react with the pituitary shut down - and some will suffer a great deal more than others do, some will have long term consequences if certain parts of the pituitary do not re-awaken afterwards and get back to full working order. you have no clues at all as to how your own body will handle this. it's a huge gamble and for what? a few weeks hoping that your endo pains will be eased...which having the right pain meds would do just as good a job and not have any long lasting risks.

that's in a lengthier nutshell my own reasons why these drugs should not be used.

Use the search box on the green bar and type in GnRH, Zoladex, Lupron, Prostap and Decapeptyl...all terms used on this forum for these drugs and there are PLENTY of 1st hand experiences written up for you to peruse through.

lupronvictimshub.com/index....

nwhn.org/lupron%C2%AE-%E2%8...

lawyersandsettlements.com/a...

If you do decide to go ahead knowing you have done all your research - then make a list of all the side effects to loo out for - inform those you live with and parents etc what you may go through and to make allowances for that and any changes in your personality.

Inform your employer than you will be on chemo and that you may need adhoc days off work if the treatment side effects are too much to cope with.

Unlike other drugs - once it is inside you you are stuck with whatever it throws at you in the coming weeks. It's not like a bad reaction to antibiotics or other tablets you take every day where you can stop and switch brands and try something else.

This stuffstays in your body for the whole month at a time - and the traces of the old implants remain in the body for up to 4 months after quitting. Though in that time the strength is not strong enough to suppress the pituitary from waking up slowly and begin producting of various hormones - and was each one gets back in business the side effects associated with the loss of that hormone will diminish .

Taking hrt will only add back the sex hormones that you are trying to suppress in the 1st place and yes that will help diminish some side effects - but it doesn't replace all the hormones that can be affected by the pituitary factories overloading and shutting down.

I didn't have and was not offered HRT. Only found out after quitting that I could have demanded it. - but damage was done by then and the long term side effects wouldn't have been reduced by HRt in any case.

VERY BEST OF LUCK if you do decide to go ahead - you will need every ounce of it.

[ladyixie in reply to Impatient]

wow thank you very much! This was very informative and sorry to hear about your experience.. i defo need to do more research

[Bokkie in reply to ladyixie]

I had Zoladex along with Livial HRT and it made me very unwell. Headaches, nausea and horrific mood swings. My blood pressure went through the roof and was so high I could have had a stroke! I am now on high blood pressure medication. I would never have it again. My memory is also quite bad now too, but not as bad as poor Impatient. I have been lucky there. I am now having no hormone treatment because compared to what Zoladex did to me I would rather struggle on without anything. x

[ladyixie in reply to Bokkie]

there seems to be a recurring theme of headaches and mood swings, i usually get these in the days leading to my period and its quite bad so i can't imagine how bad things will be if i start the injections!! thank you for responding i'll have to research hrt as well as it hasn't even been mentioned to me x

[030612]

Didn't help me either, I had ovarian cysts back before I had even finished my three months. Only. Only benefit was no period for four months. I was relieved to get off of it. Had I known what I know now I would not have taken it either.

[ladyixie in reply to 030612]

i've already got an ovarian cysts and endo as well. So they want to treat me aggressively hence the zoladex. Did you finish the course or you stopped?

[Endoworrier74]

its horrible hasnt helped me at alll only stopeed my periods if you do have it i would recommed taking hrt with it as the suffered with hot flushes and night sweats good luck sweeet hope its a beter experiance for you x

[ladyixie in reply to Endoworrier74]

they haven't mentioned having the hrt to me, may have to research it as i already get night sweats!!

[Endoworrier74]

I would research it sweet I didn't know until I went I my gp and he gave me a low dose bcp and it's helped me so much sode effects wise x

[Lacy14]

Hi Ladyixie

I've had two Zoladex injections so far and haven't experienced any negative side effects apart from the occasional hot flush. And I've had a few headaches but I'm not really sure if that's because of the Zoladex or not. It's been a positive experience so far in as much as the Zoladex has stopped my periods (heaven!). I have my second laparoscopy on 23rd May; I'm hoping to find out that it's made a difference. We'll see!

Of course everyone is different, but just wanted to share my experience. (Background - I'm 28, years old and have stage 4 Endo).

Good luck in your research and treatment xxx

[ladyixie in reply to Lacy14]

Hi Lacy14 thank you for your feedback, if I do decide to go ahead I hope my experience is like yours. I hope your laparoscopy goes well and its made a difference for you. x

[LeyaC]

I put a post up a while ago asking about zoladex/prostap. The responses were good and I'm booked on for Thursday. I'm now terrified of what they'll do to me. The one thing I'm worrying about most is of its shutting down the pituitary gland then will my fertility ever come back? I'm only 18 with no children and I've been advised to have children before zoladex just in case but I've been reassured by my specialist and so went ahead with it. Now what happens if he was wrong and I can never have children? I'm stressing out really bad now, I dont know what to do. Can someone help at all? Whether they conceived after zoladex or not?

Thanks,

Leya xx

[LeyaC]

See I've already been told to conceive by 20 so I'm worrying that if I dont and I'm starting the zoladex that I will end up having to adopt, not that its a problem but I'd rather have the experience first. I hope its ok to conceive afterwards :/

[ladyixie in reply to LeyaC]

Good luck I hope Thursday goes well, if you wouldn't mind please let me know how it goes/changes x

[LeyaC in reply to ladyixie]

Will do x

[Diagnosis21]

Hi Hun, the zoladex can help to conceive that's one of the reasons why they put me on it was because apparently its shuts your overies down hence having no periods and then when they wake back up again they kinda go crazy with ovulating and that gives you abit of a leg up. That's what my gynea told me last month anyway i hope this helps.

[Diagnosis21]

The zoladex has never helped me pain wise one of the reasons why they pulled me off it i had 5 injections of zoladex and has suffered immensely with hot flushes night sweats and my moods was all over the place. One minute id be freezing the next o was boiling and the temperature of the room didn't change. I wouldn't recommend having it solely for pain as its done nothing what's so ever for me. Only time will tell if its helped my ovulation.

[Hidden in reply to Diagnosis21]

Some doctors say that if GNRH does not help with pain..... Then endometriosis isn't the reason for the pain!

I've always wondered if that is fact or fiction?

[LeyaC in reply to Hidden]

I was told if the pain doesn't get better then its not Endo, yet I've been diagnosed, how stupid, eh??

[Hidden]

Hello..... I was very anti GNRH drugs. I hated the sound of the side effects and the stories I've heard.

However.... Since February I have experienced the worse pains I've ever had in my 20+ years of having Endo.

Two weekends ago.... I couldn't stand the pain anymore. I couldn't sleep and going for a poo was agony (sorry TMI). So I called my GP and together we decided that I would try GNRH (what my specialist recommended) for just one month. The agreement was that if the side effects were awful I wouldn't have the second injection.

I had my injection (decapepyl ) on the 8th April. I have only experience mild headaches and slight nausea.

My advice would be to try the injection but only have it for one month at a time. Then if the side effects are too bad, you do not have to have the next dose.

As I said, I only agreed to GNRH as I was desperate, I have Also wrote to my consultant and asked for a hysterectomy as I can not take anymore of the pain and the impact my endometriosis (and adenomyosis + fibroid + PCOS) as on my quality of life. I am 43 and completed my family.

Best wishes,

Barbara x

[Impatient]

maryna - use the search box on the green bar at the top of the page,

the keywords to look for are GnRH, Prostap, Zoladex and Decapeptyl.

you can also google the patient information leaflets for all the drugs which are freely available online but do not tell you any more than they are legally required to tell you - so it also helps to read up on what your pituatary gland does for your body - and thus what shutting it down can do to your body too.

you can delay starting GnRH of your want more time to research this before you decide to go ahead - delaying for 1 week or two, will not make any difference so take all the time you need to do your homework, decided if it is really something you and your family are ready for you to go through.

And if you don't want to have it no one can force you to have it, you just have to say sorry but I have done my research on the GnRH drugs and I am not ready to try the at this time. That way you still leave yourself with the option of having them at a later date should you feel you want to.

Do not expect doctors or nurses to know much at all about the drugs they prescribe other that what is told to them by the sales people for the big drug manufacturers who will spin the doctors a yarn to get them to prescribe the drugs and pay them bonuses if they do. It is a business, so the best thing you can do is actually be your own doctor. You after all are the only one who has your own best interests at heart and are not ruled by money making scams and promotional waffle and feebies from the drug companies.

Take your time to find out all you can and there is plenty available online not only on this website but dozens of other websites too. Take notes and save interesting websites you come across. If a question springs to mind then write it down and go back a research the answer later on.

very best of luck to you which ever you decide to do.

[Impatient]

I am so keeping my fingers crossed for you cuddlybarb. sound like (touch wood) you are one of the luckier souls. Hope to goodness it stays that way for you.

The difficulty is you just cannot tell from one hour to the next how your body will react to the depleted hormones issue, but so far so good and long may that continue.

[Hidden in reply to Impatient]

Hello Impatient.

My fingers are crossed too.... I was just so desperate!

How are you doing? I hope the mirena is still working well for you?

Barbara

[Donna1977]

I had arhs injectopn last month am due back tommorow

Was told woul put my body in o a temporary menopause. Nothing else have been ao ill for last four weeks violent nausea and headache s as if the rest of my normal side affect were mot enough am not even sure what to do now thet offered me hormone replacement havent tried that as yet. I would find out mpre information.