Hi guys, so I’ve been on zoladex for 3 years now, recently i saw a new consultant and it flagged to him I’d never had a bone dexa scan... i didnt realise how serious until he said for me to not have my next injection until I’ve had one... I had the scan and low and behold I’ve got osteoporosis in both hips!! Im shocked, angry and upset because now I’ve got to come of my zoladex treatment and god knows what thats going to do after 3 years of pain and bleed free life. I’ve now got a solicitor involved to file for a medical neglegence claim and they are more than satisfied that I will win considering this could of been avoided! Has anyone else had an exeprience like this on zoladex I’d love to hear your story if so because i feel super let down that noeone ever checked if i had a scan in the whole 3 years 
even though my new consultant told me this should be done annually especially as im only 21!
Help! Diagnosed with osteoporosis after 3... - Endometriosis UK
Help! Diagnosed with osteoporosis after 3 years of being on zoladex with no dexa scan :(
We're you not given hrt!!! That is meant to help prevent it.
Hi thank you for your reply, so over the 3 years i’ve been on and off HRT and different contraceptive drugs, i would go on one and then it would bring back my bleeding... so the consultant would take me back of it until the bleeding went again this was usually 1-2 months and then i would try a different add back hormone! This went on for three years until feb this year were i was given the coil! This finally worked well with the zoladex for me and i thought it was the end! However now im coming of zoladex so god knows whats going to happen its generally just been experimenting with different drugs for 3 years along side it... started with different hrt’s then we moved on to contraceptives! Nothing worked so i was never on add back hormones longer than 3 months at a time
Regardless if your on zoladex you should be on the hrt consistently!! He could have added other stuff in but I was took of other stuff with the risk of clotts. Like I said your meant to stay on the hrt because of the risk of osteperosis iv got my hysterectomy next week it's open surgery and even with all my problems my consultant said he will not take both ovaries just one because of the risk of osteperosis and other health problems etc. You really should have been kept on it. The hrt is used for that reason. Have u been suffering with pain. Iv had really bad vit d problems to the point my baby was born with a bone disease ricketts because my vit d was that low so me having bone issues already I know how important the hrt is if your in medical induced menopause. Xx
Yeah i guess i was just used as an experiment thats how i feel anyway! Hopefully my medica neglegence claim comes through then considering it was their fault! I havent suffered with the pain for quite some time now it was only bleeding and a bit of pain when i was given the add back hormones it always went away when i was taken of the add back hormones! Ive had loads of blood tests now since they found osteoporosis and i think vitamin d was one of the tests ( i could be wrong) but they all came back fine!
It's dangerous osteperosis is really bad, not only that menopause causes other health problems too. Iv seen so many women on here and iv only been on this site around a month just fobbed off or not treat correctly. I know the NHS r so busy and really what would we do without them but a small few need to remember what profession there in xxx
I apreciate the NHS a lot and i know they are under pressure however the worst thing about it was it wasn’t the NHS... so i started with the NHS and then 2 years ago my company paid for me to have private medical insurance... so i was actually under the care of a private hospital / consultant, the only thing the nhs has been involved in is i would go to my usual doctors surgery to get the zoladex injections as they were done through the NHS! Im worried about the osteoporosis, ive not been to the bone speaclist yet but judging by your message its probably not the best thing to be diagnosed with lol
Xx
No, I don't have a lot of knowledge about osteperosis but my little boy had osteopenia related to rickets and lost around 40% of his bone density... Osteopenia is midway point to osteperosis so yes its preety bad!! My vit d deficiency wasn't relayed back to me on blood tests in pregnancy meaning my little boy was born with fragile bones and fractures he was under a specialist at Royal Manchester chicldrens hospital so u really wana be treated if there is treatment Xx
I’ve been told by the doctors that not all hope is lost and that there is treatment i csn have to delay any further bone denisty loss, just a case of getting an apointment with the specialist now to see my options! xx
How old r u again xxx
Sorry 21, so young to be going through that xxx
Yeah i know honestly just feels like its one thing after another, i’ve been prescribed anti depressents recently because after 5 years of crap with it all this was just the tip of the ice burg for me!
I know the feeling lol iv had 10 years of it and eventually having a hysterectomy aged 29. Try get a good night's sleep and some rest I know won't fix it but sleep always helps if u wana chat I'm here xxx
Thank you so much! And thanks for the chat today its helped get it of my chest! Xx
I’m sorry to hear about your experience xx
How did you manage to get a hysterectomy at 29??
I’ve been asking for years and years and YEARS!! And my surgeon refuses to.
Zoladex works for me so I cant see how it wouldn’t stop my endo pain. I don’t want kids and it would just make life easier.
He said too many people have had it and then regretted it but it’s so frustrating not being able to have it done.
I've had about 10 years of very heavy periods, significant pelvic pain, endo and little operations. Tried various medications and contraceptives nothing helped even going in toenopause didn't. Think alot of it was that I can't have any more children as its so dangerous for me, and my endocrinologist said if I had anymore id end up in intensive care (other health problems) so the fact I can't have anymore anyways was another reason I think also because we have tried everything this took a long time to get to this decision you also need a consultant that won't just give you 10 mins of clinic time you want someone that will sit there and listen!! Xx
I’d be finding a new GP or surgeon, they can’t refuse it’s your fertility not theirs to decide. It’s not up to them at all, it just makes me so angry to read that this profession still thinks they own the rights to decide women’s minds and bodies.
If you want one get one, change GP or just ask for a referral, they can’t actually refuse.
Sorry this has happened to you, hopefully you will get an appointment soon with a specialist so you know exactly what you are dealing with and treatment available to you. Try and stay positive and good luck with your claim also.x
Thank you so much! X
Sorry you are going through this. I believe Zoladex is only licensed for six months, some do carry on prescribing, but this is considered off licence and the consultant is likely to be more responsible. Your GP surgery in giving it also has a duty of care.
It’s worth double checking this though, I’ve had five, but fairly sure I’ve read the info somewhere.
Did the consultant ever ask you to sign any documents about taking it for a long period?
Hi thank you for your reply! No i’ve never signed any documents about taking it for over 6months, i wasn’t aware it was only licenced for that amount of time either which is interesting!
I don't kow how long it's licenced for but I was told its not a permenant medication also, and it's actually used for men with prostate cancer!! Xx
I think this is wrong. My specialist has always said I can take it as long as I want. 2 year scans always booked and hrt to be taken but I could take if for 30 years if I want.
Never signed anything. I’ve been on it for 3 years now and it’s the best thing ever
Hi
Not here to upset anyone, I’ve copied this from the product information leaflet
‘The length of your treatment with Zoladex will depend on what you are having it for:
To treat uterine fibroids, you should only have Zoladex for up to three months.
To treat endometriosis, you should only have Zoladex for up to six months.
To make the lining of your uterus thinner before an operation on your womb, you should only have Zoladex for one or two months (four or eight weeks).’
Normally anything outside of manufacturers recommend dose would potentially be considered off licence, this is down to individual doctors.
These are things the solicitor can check on. Is the original prescribing consultant aware of what’s happened?
It does say on the manufacturer site up to six months for endo.
Hopefully the damage is repairable and you won’t get the endo pain back. What did the insurance company say?
If it was working for me and it was suggested I’d probably try a bit longer, but as it isn’t, next month will be the last.
My insurance wouldnt aprove a dexa scan because i hadnt had a fracture so the consultant himself had to email my doctors to tell them to refer me through nhs considering the nhs were giving me the zoladex every month and thats how i finally got a dexa scan
That consultant effectively saved your life
I’ve been in contact with my solicitor and they have discussed my case with a medical specialist so im assuming they hospital / consultants have slipped up somewere because they seem to think its medical negligence, unfortunatly I already know that osteoporosis its irreversable damage to the bones the only thing we can do now its take medication to stop any more density loss and I think when i see the specialist they will tell me about a certain diet as I’ve done a bit of research, the insurance company dont really have any input they just aprove my apointments and treatments, i had been under the care of one gyne consultant for about two years now and she was the one monitoring my treatment telling me what to go on ext so she was more than aware of my treatment course and how long i’d been on it for. the only reason this has all come about is that she is not working due to personal reasons so I had to see another gyne consultant as i needed a follow up smear test ( after having an abormal one last year), he asked me a few questions and it flagged up to him that i had never had one
Sadly we don’t get told enough sorry this happened to you there’s a lady on here in a wheelchair because of it I got offered it and wasn’t told anything cake home and looked it up myself low and behold millions of stories how bad it is
She’s in a wheel chair?!?
Yes
Well hopefully that doesn’t happen to me then
She said it ruined her life
Do some research love they keep changing the name of the drug to try and make it legal but apparently lots of people fighting to get rid of it she has this Facebook page full of people who took it
To be honest i did a lot of research back when i started it 3 years ago, I never came across anything that alarmed me enough not to take it, if i’d known what i know now i probably wouldn’t but I had no idea, to me it was a god send because it took my pain and bleeding away!
Apparently this lady was on it for years aswell and didn’t know any difference till problems started cause she was on it long term I’m pretty sure you should have a case if it’s backed up right if you look up old posts you might find her comments she keeps telling people not to go on it but much of it gets ignored cause endo is a death threat in itself for some and they just want relief like you said
Do you know who actually writes the prescription for the injection?
This could end up being a claim against the surgery or both, not sure.
I’m assuming with mine that it’s the GP as it’s done there, but it’s the consultant that asked them to do it.
Can you see the consultant for the osteoporosis on your health insurance and speed it up?
If they’ve said that they’ve caught it at a reasonable time and it’s managed you could have no issues, try not to worry until you have the bigger picture. I know it’s not easy.
I’m not entirely sure who writes the actual injections... i know that the hospital letters from my consultant always say ‘ continue on blah blah’ another word for zoladex cant remember what its called) thats the same letter that goes to my surgery! And ive had the same 2 nurses for 3 years who have given it to me, i’ve seen so many people its hard to know whos to blame! Everybody really haha! I would get it on my insurance but my cover is ending soon due to the fact i have a new job so i wont be working for the same company who supplies me with it
My solicitor has asked for the info of every practice involved which is one nhs hopsital, one private and also my surgery, im sure they will figure out who was meant to be keeping an eye on me!
Maybe get in quick before you change jobs 
It'll be interesting to see what the solicitor sorts out and responsibiity. Will you ask the solictior for a copy of all the paperwork (likely they'll get it sent on disc, normally how it arrives these days)
Yes i’m going to make sure i get everything, hopefully i win because its not right that i’ve ended up more ill than when i started going to the hospital, this could of been prevented and now i’ve got a whole other illness to deal with along side my endo now!
I can’t see why you wouldn’t win. They haven’t given you clear information about the drug, if they took you off the HRT without explanation of potential conditions, both could be considered negligence. It will take time though.
Do you generally get on well with GP’s, or are you considering changing?
I had no problem with my gp’s or anyone who had treated me for anything The only time i considered changing was when i first went to the doctors concerned about the symptoms i were having they made me feel like i was over reacting and i pretty much had to demand a referal to a hospital after about a year ( this is when my endo journey started) I honestly had no idea about how serious this all was regarding hrt and yes they have taken me on and off hrt/ contraceptives the whole 3 years ive been on zoladex not ever been on one consistently
I’ve had no problems with most requests, had same issues being believed.
This seems to be standard practice 🤣
The coil isn’t a hrt add back. I didn’t get on with my first 2 lots of hrt and so I stopped taking it not realising the severity of it. Now I’m on an oestrogen only one and life is good.
My dr basically gave me a massive telling off for not taking one but luckily my bone scan was fine.
You are meant to have a scan every 2 years so if they haven’t done one then 100% neglected but I’m shocked.
But yeah, try on oestrogen only if you have the coil, they allowed me to do that and it has worked wonders. I’ve been on zoladex same amount of time and never do I want to stop it. I panicked so much with COVID about it meaning I would miss my injections, luckily I didn’t.
I didnt get on with the hrt patches so i was told i could try contraceptives instead of hrt and that would be a suficent add back hormone to take along side the zoladex, im not allowed zoladex anymore ive been told just to see how my coil works on its own, i think they mentioned me taking estrogen tablets to help calcium stick to my bones
Yeah I take the contraceptives.
They are still a hrt add back but the coil on its own is not good enough and so your dr has done you with poor information there.
The coil worked for me for about 2 years and it slowed my periods and lowered pains and I’m now on my third but that alone has stopped helping me after the first one I had. I’ve have the coil, zoladex and oestrogen only contraceptive and that’s the winning mix for me.
Just made sure you aren’t fobbed off in the future just being left with the coil as it probably won’t be enough.
Oh how savage haha they kept trying to put me on the coil after all these years of trying different pills along side the zoladex but i was adamant not to have it until last resort which is what we got to last feb when i finally said they can try the coil, if this didnt work it was going to be surgery for me, i saw your comment above about taking zoladex long term, if not for physical reasons I just want you to know mentally it has destroyed me, my brain is fried its not the same as it used to be, i cant remember anything anymore, even forget what i said mid sentence sometimes, i work as a bookkeeper and never struggled before but now i find it complicated, im not saying it happens to everyone but i just wish id been better informed about the mental side effects
I take it for endo. My brain was fried because I was in pain 24/7 so I do have my moments I’m known for already luckily but yeah, my memory is terrible.
Luckily that and weight issues are the only things I’ve had when it comes to side effects, I know people have full menopausal moments.
Luckily the grumpiness and just Terrible mood/mood swings have gone and as soon as I started taking zoladex it was like a weight lifted off my shoulder. I became myself again and I was robbed of so many years because of endo.
It’s all been worth it for me
But I hope it is and i hope you get what you need with the lawyer process.
Thank you for your input Xx
I’m 53 and had two Prostap injections last year over a 6 month period. I think these are similar to Zoladex, well, at least they do the same job. The Consultant advised he would only let me have two as he said they can affect your bones. He also prescribed Tibolone to counteract any adverse effects of the injections.
I think they are pretty much the same medication, very lucky that your consultant knew how risky they are
I was on zolodex for 5 years at that tie I was the only female in the uk with endo having been on zolodex for more than 6 months it was back in the early 80s . But even then I had to have a bone scan every 6 months. But as soon as it was stopped. I had a total hysterectomy. I never had another bone scan I am now suffering with pain in joints and tendon issues.
Now wondering if it has anything to do with that
I defo wouldn’t leave anything to chance, i’d get it checked considering ive been on it r 3 years and im only 21 with bone problems already it seems!
I have been suffering since 2006. I have had no scans no hrt no after care. I have given up with doctors. I cry with pain and take pain killers. I am so glad you have a case to persue I wish you all the best on a win xxx
I am so sorry to hear that, i’m determind to fight this and get my story heard, its unfair for so many women to just be fobed of by the people who are meant to be looking after them xx
While all of this is going on, what the the plans for you endometriosis? Do you have an excision surgery date?
I haven’t been given a plan, consultant just said he will see me in 3 months for a catch up ‘ if i want to’ because he wants me to just ‘ see how it goes’ just with the coil
I think even with all of this going on I’d be pushing for a conclusion and surgery date for the endometriosis? They’ve robbed you off for 3 whole years?
Yeah that is the plan in the long rung! My endo is managed at the moment my main focusing is finding out what i need to do about my osteporosis then i will focus back on the endo, yeah its crazy three years of my life wasted because turns out im having to come of the zoladex anyway lol so would of been better to just have had surgery in the first place!
I really hope your lawyers do a great job, what an awful way to be treated.
Thank you, me to!!
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