I have been back and forth to doctors and hospitals for the last 4 years with Endometriosis symptoms and they have decided to give me these zoladex injections every 4 weeks for 6 months starting tomorrow to find out if i have endometriosis i am really worried about it to the point i keep putting it off. I have not been given much info on it and am worried about the HRT. Has any one had to use this treatment and if so can any one give me any info on what its like.
Please help very scared and worried.
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sarahCh
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Hey i was the same as u with not much info at all. I would speak with ur consultant or doctor and get them to explain properly to u exactly what can happen. I have been on decpapetyl and i hated it, i wasnt given info so when i severe side effects i was terrified but if i had the knowledge first it may not have bn so scary. It affects us all differently but do not agree to anything until u know the full info. I made that mistake im afraid. xx
First of all Do Not start zoladex until you have done your homework on the drug, and informed your family of the side effects and possible consequences and prepared yourself, your home and your work colleagues about what lies ahead if and when you do decide to start.
It does not matter when you start the drug.
It does not matter who gives it to you, whether that's your GP or a Gynaecologist or a practise nurse.
So first off do not have that implant tomorrow, it can wait.
Tell your doc you want a little time to think about it. Even if that is all you were attending the doc for tomorrow, I would suggest you phone and rebook the appointment for a few days time so you have enough time to think it through, read up on it and prepare.
You should NOT be being put on zoladex for endo without being diagnosed with endo.
Using the drug as a diagnostic tool instead of surgery is unethical and dangerous.
surgery is cheaper than a 6 month course of the drug for starters, and it is cruel to put anyone on these drugs without them having a diagnosed reason to be on them. Whether a GnRH patient has a good or bad experience on those drugs, I would imagine 100% of the endo ladies on this forum would agree that it is not a substitute for a diagnostic lap op.
If your gynae suspects you have endo, you should be refered for a diagnostic laparoscopy first and foremost if that is possible. Or even open surgery if a lap op is not possible.
Then when you are known to have endo for certain, you need to try different treatments for it first before getting to the GnRH stage. It should be a last resort not a 1st and certainly not given if you are undiagnosed.
The drug Zoladex is a GnRH drug, one of many, all with similar side effects and risks and rules. Zoladex is given by an implant in the stomach changing side of stomach each month.
It is a cancer hormone treatment. it is listed on all the cancer websites.
It is a very powerful drug, possibly one of the most powerful you will ever have to take in your life time.
Not a decison to be made quickly or without preparation.
You will need support from family and friends in many ways and they must be part of the decision process. If you have children or pets then you need to have arrangements in place for them to be looked after when you cannot even look after yourself should that happen and it might.
I'm not saying it will happen, but it does for so many women, that it is definitely something you need to be aware of and have plans in place for, in advance if at all possible.
there are many websites around with women reporting on what GnRH drugs are doing and have done to them, and it can be a really hard struggle to get through the treatment for a significant number of patients.
whether you are a cancer patient or an endo patient the side effects and risks are the same.
It does NOT cure your endo, at best it will relieve pain from endo while on it, but that pain will return afterwards. It pauses the progress of endo, but that is just a pause, it will return to where you are now if you have endo.
The first step after delaying starting zoladex, is to read the patient advice leaflet. (see below)
Don't assume your gynae has read your full medical history before suggesting it.
Many have not.
So check out if you are a suitable patient to be on that drug. Look at the unsuitable patients lists and check if any of that applies to you.
Next you need to know how the drug works. It starts by the implant releasing a flood of chemicals targetted at the pituitary gland in the brain which is where the sex hormones are made. This flood overloads the pituitary gland causing it to shut down.
This has various complications on the function of the rest of your body in addition to causing your ovaries to stop producing the hormone oestrogen which feeds the endo.
Another bit to switch off is the thermostat that controls your body temperature, which causes hot flushes and cold chills.
This can be a few times day or several times an hour every hour 24/7. It varies a lot.
And for some ladies, they can find relief from this by taking HRT drugs to add back a few of those missing sex hormones. The HRT may help or may make things worse. it doesn't suit everyone, but most ladies have reported an improvement by taking HRT, but not everyone agrees.
The patient advice leaftet lists some but not all the side effects you can experience.
Ignore the fact that they say some patients 'might' experience some of them. MOST patients will experience many of them and that's not too bad if they happen one after the other, but when you have several happening at the same time it can be a wicked experience.
Not necessarily painful, but messes with your head, your moods, anger, short temper, depression, the worst teenage temper tantrums you ever experienced even worse than when you were a teen. For this reason you need to warn your family what to expect when your character changes and you start acting like a woman possessed by the devil at times and for no apparant reason. Your family will probably bear the brunt of these mood swings and it can be a very unpleasant experience for them as well as you.
And don't expect you will have any control over it because often you do not.
Loss of short term memory, hallucinations, weird dreams, uncontrolled thoughts and images in your head. (for these reasons - I suggest you keep a running diary of your experience so if you are forgetting you have record to refer back to.)
Then there are the physical side effects: blurred vision, hair loss (from mild to significant and noticeable- it varies), tingly skin, itchy skin, rashes, hives, dizzy spells, migraines or headaches, sensitivity to light or noise, bone pain, joint pain, muscle pain, palpitations, racing heart rate, sickness nausea, upset tummy, hot sweats and freezing cold chills like you have a raging fever all the time.
These are some of the lesser of the side effects there can be several more serious ones, and your family should have a list of them to know what to look out for and get you to hospital if they happen.
Problems passing wee, liver problems, heart problems and so on are serious complications.
Now the hope is that at the end of treatment these will wear off and you will return to normal, but there are risks that some of these side effects do not recover after treatment.
Also while you may only get 6 or 8 of the side effects you can get most of them at some point in the course of your treatment and the worst days are when several are happening at the same time. It can make you almost suicidal at it's lowest point.
Not everyone gets a severe reaction but you do not have a clue when you start if you will literally be lucky or dreadfully unlucky, so prepare for the worst and hope for the best.
As for libido- it will hit zero, you are chemically castrated so do not expect to have any emotions about wanting a sex life, it will vanish.
BUT equally do not get pregnant either. this is not a contraceptive drug even though it stops your periods. it is a highly toxic drug and causes birth defects in babies and miscarriages so avoid pregnancy by always wearing a condom for sex (BC pills don't work with zoladex) and carry on with safe sex for 4 months after the last implant you have put in, even it is just the first one only, as the residue of this drug can stay in the body up to that long.
There are a lot of websites with a lot of experience and info about these drugs so take time to read them. Not everyone has a rough time, but so many do, you must be aware of that.
Firstly here is the website linking to the GnRH drug Zoladex patient advice leaftet:
the website for the UK accreddited endo surgery centres is:
bsge.org.uk/ec-BSGE-accredi... try and get refered to one of them if you are diagnosed with endo by surgery and they have not done anything to cut out the endo or laser it back. In other words they just looked inside but the surgeon doesn't have the skills to tackle endo.
There are two kinds of gynaecologists (at least), fertility experts and endo experts. you do need to find a surgeon who is an endo gynaecolost and knows how to surgically remove endo from tricky bits of you if you are found to have endo. A lot of the regular gynaecologists don't have the experience or skills to recognise endo or tackle it.
Lots to read up on.
I would never say don't have GnRH drugs if you are found to have endo, but definitely don't start till you are sure you do have endo and you are ready for what the drugs might do to you. Personally I had a bad experience on zoladex and wouldn't touch that stuff ever again but I did manage 4 months on it after diagnosed with stage 4 endo.
As it is used as a form of pain relief, you can do just as well having 6 months of periods with adequate pain relief if only the doctors would be prepared to hand over decent strength pain relief instead of these toxic GnRH drugs. All the manufacturers agree on 6months max in a life time for these drugs on endo ladies, though some women do find they work well enough to ask to stay on the drugs for longer, but that is against the advice of the manufacturer and it will result in bone density loss to the pelvis, spine and skull and put them at greater risk of fracture and you won't be any psition to sue them either if your long term health is compromised by side effects..
A 6 month course of the GnRH drugs will leave you with the bone density of a woman who has had 10 years after menopause naturally. In other words with the bones of a woman of 65 regardless of what age you are now. Your gynaecologist will not know if osteoperosis runs in your family so if it does, do not touch these drugs whether you have endo or not.
Zoladex has been the best thing I have tried so far. I've been on it for 5.5 months now and really don't want to stop it.
It did take around 4 months for me to get used to though. Accepting my sex drive is now 0 was hard, and changing my behaviors to stop dehydration due to hot flushes took me a while. I also got stomach bugs in months 2 (possibly) and 4 (definitely because my partner was sick the next day) which worried me a lot because my "normal" cycle causes me to vomit so I wasn't sure if zoladex was working as expected.
It also didn't kick in until the second injection. I got my period the first month and it was longer and more vomiting than usual so that was a pretty hard start. The side effects (hot flushes and vaginal dryness) hit pretty quick after the 2nd injection.
Most of that u say does not happen..... especially memory loss......
Have u been on this drug??
I'm on it & not had any problems as yet....the most I'd say u can get for some people is like having a period each mth.....but at the mo I Have not experienced any emotions other than glad to be taking it to help save my life.
I think that although this response is very comprehensive, it's also slightly terrifying. When I was contemplating taking zoladex I saw this response and it totally freaked me out and made me seriously contemplate not doing it.
I'm fact, the majority of info I found on the Internet was frightening, and mostly painted it in a very negative light. As someone that is currently taking this drug, I wanted to write something so that people could see that for some people there can be a really positive experience of using zoladex.
It was always in the bag of tricks offered by the gynae and I never wanted to go there. I'd read the horror stories and I wasn't prepared to face them becoming a reality. Well, after a 6 week long period, including anal bleeding, and having to wear what can only be described as adult nappies, I became desperate to try anything. And so the zoladex began! And I can honestly say it is the best thing I have ever done (so far)! I'm 2.5 months into it, so perhaps it's early days but so far it's been a dream. I had the worst period of my life that lasted for 4 days about a week after I started the injections (was completely bed bound) but once that went, it has been amazing. Almost all of my symptoms have gone and I'm living a pain free life! I'm not taking any HRT and so far the worst of my symptoms is a hot head during the day (like when you blush) and a need for fresh air, and at night I get night sweats that sometimes wake me, but it's literally just waking up feeling a bit hot and sweaty, pulling off the sheets and going back to sleep. I keep a bottle of water by the bed as sometimes a swig of this cools me down the quickest. I also keep a water spray bottle and mist myself till I feel cool.
I always used to be terrified to take it after hearing the stories of others and I can honestly say that of all the treatments (4 laparoscopies, the pill continuously back to back, mirena coil etc) it has been the best one with the least symptoms. The other great thing is that because I was running the pill back to back prior to this, I've actually felt less hormonal on the zoladex. I've actually felt more like me - happier, no mood swings and an increase in libido, so much so my other half can't quite believe his luck - sex and it doesn't hurt! Even the injections themselves have been absolutely fine. Not half as painful as I anticipated.
I haven't posted this to brag, but to ensure those contemplating this treatment hear at least one positive story about it. I'd do it again in a heart beat and I'm going to be gutted when I have to stop! I know everyone is different and it might not work for all, but some of us do have positive experiences sometimes š
Good luck ladies, I wish everyone could find a treatment option that works for them š¤ š
Also, in case anyone is interested, I've started a blog in which I give all the gory details of my experience of having endo. It's not meant to be informative, more of a no holes barred (literally with my endo) experience of day to day life with the disease. Please feel free to check it out:
I think you've got a comprehensive answer already lol. I had a 6 month course of zoladex and a few years later a two and a half year course. It helped with my pain a great deal and I do not regret it at all. However I agree that you should be diagnosed first. They wouldnt put a cast on a leg to see if its broken! Unfortunately I've learned you have to make a fuss and push for what you need yourself, whether its lack of information, not being bothered or laziness doctors don't tend to offer the best advice (yes I'm generalising and they can't be experts on everything). Demand a referral.
I totally agree about being informed and avoiding feeling rushed into anything. Zoladex is a big step and should only be used when you know what it's being used for! I know there are a lot of horror stories out there, as there are with many drug treatments, but Zoladex isn't all bad. I was on it for a couple of years some years back (I have stage 4 endo attached to pretty much everything) and my latest stint on it is coming up on 5 years. I still have pretty vivid memories of crippling pain, massive blood loss and a real fear of not being able to hold down my job pre-Zoladex so to be honest I would have tried anything. I'm a single Mum working full time so losing the ability to work would have meant losing my house.
I manage the side effects in a variety of ways. My wildly variable thermostat with humour and layering clothes; my mood changes with exercise, meditation and generally trying to be kind to myself; weight gain, exercise again; occasional antibiotics for breakouts. And the scariest one for me was the development of osteopenia in my spine; I took up long distance walking and now I actually enjoy bone density scans as my bone density is actually improving with age and going closer to the normal range!
Perhaps I'm trying too hard to be positive as I have no other option* but after benefiting from reading others' posts for a while now I thought it was about time I added something that would possibly help someone reading who may be using Zoladex as a 'last resort'.
* Not intending to scare anyone off surgery but coming up on 5 years ago I went for an ovary and tube removal and was one of the (VERY FEW) unlucky ones. I had an undetected bowel perforation (not a specialist endo surgeon) and after emergency surgery, peritonitis, intensive care, a temporary colostomy and many, many complications over a summer spent in hospital no one wants to operate on my mangled insides again! So GnRH is it for me for now and to anyone else in the same position it is possible to lead a happy life on Zoladex with manageable pain levels. I am a bit of a tree hugger now after the whole near death melarkey though!!
Are you using hrt with zoladex? My gyno said I should start adding back oestrogen but I'm pretty scared because I don't want to start throwing up and getting migraines again
Nico1 - I think its good you have something positive to say about zoladex I had my first injection a few weeks ago and just feel generally ill but nothing I cant cope with compared to the pain i usually get, this is a last resort for me but to be honest i would literally try anything to stop how i was feeling before.
So many scary stories are put on here about the zoladex, my gyne also said i would read a lot of bad press about it but the people who it works for generally never comment as they are just able to get on with there lives. Really hope it works for me and im not just being stupidly optimistic!!!!
Hi DoubleL, optimism is the way to go, nothing stupid about it Hormone treatment isn't an exact science (as synthetic hormones are probably as unpredictable as natural ones!) but if it's manageable for you now I doubt you'll veer drastically off course. I do have some cycles that have a certain 'characteristic' e.g. breakouts, gut disturbances, more pain than the last cycle, but I do have some where I can almost forget about endometriosis for days or weeks at a time - bliss when it happens! When I say cycle, I'm on the 12 week dose, seems to work better for me than the 4 week one. Although it tends to 'run out' for me the last week or 2 when bad pain returns so my GP and Consultant have allowed me to do it on 10 weekly intervals. Whatever way your treatment pans out, good luck with it!
On a general note about decision making to do with health, particularly for the stage you're at sarahCh, I went to an Endometriosis UK information day a couple of years ago and a Consultant there said something that stuck with me. It was something about us all being unique and basing our decisions on our goals rather than fear. We all have our own unique focus across issues such as pain management, fertility, work/life balance etc. and a positive first step is to ask ourselves 'what do I want?' and assertively inform medical professionals of that, repeating and reinforcing when necessary. For me I'm blessed to have a son, who is a bit of a miracle given my diagnosis, so my goal isn't more children but to have as symptom free a life as possible with as clear a head as possible (a tramadol fog of a life wasn't for me) and no more high risk surgery. So Zoladex it is - until some clever sod comes up with something better...
Thank you everyone for your comments i have only just read through these comments, i did go and have my first implant this afternoon. i walked in and bursted into tears the nurse who saw me was eve so nice we went through everything and all though she thought it was strange that i had not yet been diagnosed with endo she still talked me through it all and said it was worth a try as i saw a 'specialist' they know what they are talking about.......reading these post it now makes me question this???? now iv had the first one guess im just going to have to see how it goes from here but right now i dont feel to great about what i have done to myself now its all to much and all because they wont check properly! i hate feeling this nervous about it and now reading about what i could possibly go through! i had looked up a few things but not knowing where to start really confused me even more im only 27 and dont know if i want to go through this anymore! Thank you again for all the info you have sent me! xx
Hugs to you, I didn't mean to scare the carp out of you, I just hoped to catch you before you had the implant so you could do a bit more homework in advance, but seeing as the deed is done, and before you start the side effects happening, write down the side effects and pin them to the fridge (you could be visiting it or the freezer to cool off quite a bit so it's as good a place as any), and let mum and dad or siblings or partner know what to expect.
It's not forever, even if you can get through 1 month and decide to stop, it is your choice. If you feel it wasn't so bad and want to go for month No.2 that's your choice also.
I really hope you have an okay time on it and that you do get relief from pain, but whether you do or don't, your gynae should be scheduling a lap op for you to be properly looked at inside for signs of endo. It will be calm all through the zoladex, till you start ovulating again, so don't have any lap op till you are back bleeding again as that is the best time to get diagnosed, when the surgeons can easily see the patches of endo being active (and therefore attack the with a laser or surgically remove them) they can be very hard to spot if you are on zoladex or even if you are on the pill and the endo is not currently active.
Wishing you the very best of luck in the world and remember we are here, someone wil be here most hours of the day and night and many of us have done the GnRH drugs or are doing them as I type, and can hopefully answer your questions or offer a sympathetic ear if you need to rant. Take out the ranting online not with the people in your house. LOL.
thank you so much for all your help! i have just called my mum and told her i was freaking out my other half and my dad on the other hand are going mad about it but i think i just need to get my head around it as you say i might be just fine but i think im going to seek a 2nd opinion about it tomorrow just to put my mind at rest a bit! i will defo make sure my list is on the fridge ready for my visits lol thank you again im sure i'll be back soon x
Hi. I dont know if you are still on this forum still but i had to reply. I remember reading your post about zoladex 6 months ago. I really didnt want to do this drug but was almost pushed into it. I researched it and thought give it a go, the hospital would surely give me all the important info etc etc....i was totally pain free for the 6 months...but i wish i had never ever taken it. My friends dont recognise me. My gp said she didnt recognise a pic i showed her from this time last year. I now look ill. I lost two stone. My hair is falling out. My menral health has taken a nose dive. I have borderline personality disorder anyway and really the hospital didnt make me aware of any risks to my mental health. I am basically a nervous wreck. They are refusing to believe that how i am now is a result of zoladex but the facts show i have gone downhill since i started it. Im gutted because obv having no pain has been amazing....but it isnt worth losing my hair, i love my hair, and i sat on a main road in my pjs wanting to die during a psychotic episode thanks to zoladex being given to me when it shouldnt have. Hospitals should read notes and make you aware that its basically an aggressive drug. I read on here that people take it on and off for years??? You are meant to have it 6 months and no more. At best all it does is mask symptoms and fix nothing. Honestly the last 2 months of side effects have literally ruined me. Hoping my life improves soon. Xxx
I've had an interesting read through all the post. I've been diagnosed with endo for over 23yrs several ops of laser removal every form of hormone including 10 yrs on the Depo. My last resort now at my age is full pelvic clearance which after time I've accepted. I have my children which were a struggle due to miscarriages etc.. So thankful. Anyway I've been prescribed zoladex for two months along side another HRT pill for the side effects. My personal experience after that first implant nearly a month now was a new lease of life. I was actually 99% pain free for a while. I'm due my next implant Monday and feeling crap this week because all my symptoms are back. I feel it works for me as a temporary fix till my surgery. I read all the information and frankly it scared me too, but in comparison to the side effects of Depo and other medication I've had its no big deal. With every drug it will effect each of others differently. Take care all. X
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Hormone treatment isn't an exact science (as synthetic hormones are probably as unpredictable as natural ones!) but if it's manageable for you now I doubt you'll veer drastically off course. I do have some cycles that have a certain 'characteristic' e.g. breakouts, gut disturbances, more pain than the last cycle, but I do have some where I can almost forget about endometriosis for days or weeks at a time - bliss when it happens! When I say cycle, I'm on the 12 week dose, seems to work better for me than the 4 week one. Although it tends to 'run out' for me the last week or 2 when bad pain returns so my GP and Consultant have allowed me to do it on 10 weekly intervals. Whatever way your treatment pans out, good luck with it!
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