Zoladex nightmare & appointment hell!

Just had my gynae appointment today. 6 months of zoladex and i am done. Although virtually pain free, other side effects have ruined me. I sat in this appointment today crying and desperate for answers, reassurance and maybe a future plan. I am still really annoyed that i wasn't really given many options or was warned of the effects this drug would have on mental health. Wasn't even the consultant who saw me today, even though the reception staff sat me in a side room as i was hysterical in the waiting area. The member of the gynae team i saw, totally swerved all my questions and complaints. She said she didnt feel it was the zoladex/tibilone that has affected my weight, my hair, my violent mood swings etc. They suggested i had a depo implant then and there and then go on my way. No other explanations. Nothing. I didnt want anything else in my body today and just want everything to go back to normal. Ive basically been discharged and told to speak to them again 'when ive sorted my head out'. I am really scared now. The injections and hrt have stopped. I am hoping any side effects will stop. I am scared all the pain will come back. Scared about going from chemical menopause back to normal. I feel really stuck. Pisses me off that she refused to accept that this drug has caused the side effects but then said they are only allowed to give u 6 months of it because of the risks?!? Im sick of seeing different people who all tell you something different and there is no continuity of care X

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  • oh my god.. your story mirrors my experience with a well known hospital... When I went back for my consulation with the gyno in Aug, i explained that im experiencing panic attacks, hair losss, major anxiety, blurred vision... the consultant said that perhaps i need to see mental health... I explained my mental health was perfectly fine before I was on the injections, HRT and mirena coil!! she also discharged me from the hospital!!! I was given 8 of the injections so I am praying I will return to normal..,

    whilst you are worried about your pain returning, i think your mental health is alot more important...

    concentrate on getting your head back, drink lots of water...

    fight the battle with the pain when it eventually returns but at the moment you truely did the right thing.. no more chemicals... some of these doctors ruin peoples lives then shrug their shoulders when you question their decisions.. now is the time to concentrate on yourself xx

  • I am totally stuck now. I have lots of friends who are going to try get me thru this. Im just scared now the injections just stop and ive been passed back to gp with my life upside down. X

  • speak to your GP,apparently hospitals discharge patients when we dont follow their ‘advice’ because they are paid again for each referral they get... therefore firstly let the side effects wear off which will take time... then ask your GP to refer you to a completly different hospital...

  • Iv had my 3rd zoladex implant plus on hrt still got mirena coil...feel absolutely terrible still flooding period wise achy bones especially feet anckles shoulders and arms,terrible tummy ache ...had enough why do we have to suffer xx

  • Hello Charley-rae

    I too am using zoladex was on prostap. I am also coming up to my 3rd injection. Been continously bleeding since May. Despite using hrt and having mirena coil. Been told it takes a while to settle but I am losing hope as I don't seem to get better. Everytime they change my meds I get more bleeding and the Dr's say it will settle. I hate living like this :-(

  • Its awful having to live with this. You get sick of trying things and feeling like not improving. Hang in there x

  • Good plan. I feel fobbed off. They werent listening to me at all.

  • I know this might be a long shot but have you tried natural bio identical progesterone cream? Xx

  • Not yet. I am so freaked out and pissed off that they just wanted me to make decisions then and there. I feel like my poor body just needs a break. Xx

  • These hormones seem to cause more damage than good. I'm to scared to take synthetic hormones. I feel for you. While your trying to come to terms with this look into bio identical progesterone cream do your research I think it may help you. Although run it by your gp too see what they think. I hope this nightmare ends for you soon 💗🤗😘

  • Thanks will have a look. You get disheartened dont you. Everytime ive been to hospital i see a 'member of the team' and never the actual consultant. They all tell me something different and never read my notes! I agree with you, these synthetic hormones are very dangerous Xx

  • I can't afford to go through this rubbish I feel for you really do im paying to go see a specialist direct and see what he suggests. This passing from pillar to post is unfair. Are you not under bsge.xx

  • i felt the same as you. but now im not wasting anytime with these doctors...

    concentrate on yourself to get better...

  • I had trouble with zolodex and hrt too. I had my first period last month in a year as I was on cerazzette then 5 months of zolodex with hrt. My symptoms have started to subside after e months. I’m going to yellow card it along with other stuff as the side effects were worse than the Endo. Also I don’t know what kick backs the doctors get from prescribing it. The pain is back but I’m trying other ways to deal with this. Good luck x

  • Think i am going to have a break before anything. Any hormone based stuff just freaks me out now. Im scared about what happens to my body now. Just no continuity of care, nothing. Xx

  • No more hormone based stuff... im totally with you

  • Hi! When you stopped the zoladex and hrt did u just have to wait and see what happened? I wasnt told of anything to do to make the change easier or anything? You just stop the injections and thats that?? X

  • I told the consultant that I would stick it for as long as I could then I’d stop if I felt I needed to. She just kept saying zolodex was the best option with hrt to help the side effects. I stopped the hrt after 4 months as no benefit felt. Then the zolodex a month later. I saw mother consultant 6 weeks after final zolodex and he understood why I couldn’t stick it. So I just stopped and carried on with dietary changes and acupuncture. When I saw the consultant we agreed a wait and see approach as in the year I have been under bgse nothing has improved if anything I’ve had more symptoms. I’m seeing the pain clinic in December ( took 6 months for appointment) so we’ll see what that does. For me the pain is because my left ovary is mangled with my uterus and bowel and I get a lot of bowel pain with my period. I don’t know what else can be done as surgery isn’t really an option as I’m too complex and risky.

    My gp Is more understanding about the side effects.I’ll just have to find other ways to heal myself while I wait too see if the pain clinic can help. X

  • That is exactly whats going on with my ovaries and bladder and bowel. Surgery too risky. Ive had a crap experience on zoladex. Totally pain free on zoladex but horrific side effects. Next step they said was depo implant but im sick of hormones so now pain management...if they sort it. Its all so exhausting isnt it. You start to lose faith. I read on here that people take zoladex for years etc...when others, myself included are told 6 and no more. I would love more for pain free life its just not worth the crippling side effects. Hang in there you xxx

  • I agree. If I find something that helps me I post it on here, sometimes it can help others but still trying to find a solution for the pain. X

  • I think if we come back in a next life, we should come back as men!! X

  • I agree and all doctors, consultants etc who are useless with Endo get to come back as women with Endo.

  • Yep.lol x

  • Sorry im asking you more questions but when you stoped the zoladex was that it? You werent put on anything else to ease you back out of chemical menopause, they just stop zoladex and thats it? X

  • Yes. That was it. The consultant said if pain was a problem my options were the pill, pill or mini pill. They wanted me to take the zolodex for longer I’m sure they would want me on it for longer than 6 months if they had their way regardless of drug companies advice. It has shrunk the Endo but only slightly and I’m still under urology as ureter and kidney also affected. Got another scan for that on Friday but mri showed ureter problem again so we will see what that shows. I had a stent for 6 months which was aging I couldn’t sit down and peed blood the whole time on top of other symptoms, they put the longer stent in which was helpful as I’m under 5 foot. They even admitted they had caused me more problems. Bloody men!

  • Bloody hell you are going through so much!!! You must get really pissed off. Its confusing. Im going to miss being pain free but def not worth the shit effects. Have you read on here so many people have more than the 6 injections? Surely we should all told the same x

  • I think we are all told the same it’s great and that’s what you need but you may get minor menopausal symptoms like hot flushes. They just don’t tell us the whole truth as if they did mo one would take it!

  • I'm sorry to hear your experience, sounds terrible :( I've been recommended zoladex by my consultant, but the practise nurse at my gp is reluctant to do it as she is aware of the side effects and said she's never treated anyone my age. May I ask your ages please? I am torn between dealing with the pain and waiting for my laparoscopy and cyst removal, or giving that a go and hopefully getting a break from it - although I'm hearing so many bad stories. The mental health aspect worries me too, nobody has mentioned this to me despite my medical records stating, and me making clear at appointments, my mental health is improving from a serious bout of depression. I'd rather suffer endo pain forever then go back to that dark place. Xx

  • Hi! You sound like you are having a tough time bless you. Its so confusing trying to take everything in and work out if you are doing the right thing. I am 41 in november. Only got diagnosed with endo in 2015. I have cysts and the consultant wanted to take the cyst/ovary, they looked in and found everything stuck up with endo and so couldnt take it without causing damage. I would get as much advice as you can about zoladex. Ive had depression for 20 years. They knew this when they offered me zoladex and i wasnt aware if how much it affects mental health, especially if you already suffer with mood disorders. I have been totally pain free, which you would think would have imoroved my mood..but ive got more and more depressed as the months passed. Some people have no side effects from it. If you are worried about your mental health you could maybe make sure you look into help available to you...or maybe try 3 injections and see. I wish id not had the injections purely because i feel so low and ive hit the biggest low ive felt in years. Get as much advice as u can xxx

  • Hi I’m 44 and had Endo since my periods started but wasn’t diagnosed until 2008. You can try the zolodex but take the monthly not the 3 monthly injections that way you can stop more easily if there is a problem. Also keep a symptom diary that way you can see the benefits and problems for clearly and this will help you to know if the zolodex is helping or hindering. I only know about the side effects as I read the pil that came with the zolodex that tells you. But I had other things worsen which I don’t think were in the pil, same as with the zolodex. It works for some but not others like everything. I personally wouldn’t take it for more than 6 months as that’s what the drug company who make it say and they should know. If it’s that bad I wouldn’t want to take it at all and it shouldn’t be prescribed. Good luck x

  • Totally agree with everythibg youve said. People have said on here theyve had it for years so which consultants are right. My original one said 6, another 9 and another 12....then on monday they said 6! Wtf x

  • Thank you both so much. It is really hard to decide, my laparoscopy won't be until early next year so until then I don't know how bad things are other than a large cyst on my left ovary that my ct and ultrasound scans detected. I am only 27 and have no children and my practise nurse said she's not experienced that before. It is so helpful to know the experience of others, she wanted to go with the monthly one if at all to see how I cope and like you said the side effects will go quicker if I can't stand it! Thanks again xx

  • hi , I am 39 and was given 8 injections, even though I told them that I wasnt feeling well after the 7th injection... Im waiting for the effects to wear off..., this is the worst time in my entire life.. I am now on anti depressants, hoping and praying that no long term damage has been done to me...

  • Its shit. Im fed up

  • hi ive been on prostap now for 7 months. my last laperoscopy in feb (3rd one) was an open and close affair as everything was a bloody mess. my endo has mangled my ovaries stuck to bowel and uterus and uterus stuck too, odbly i didnt think i had that much pain, only when i had a period felt like id been run over by a bus that lasted for 10-14 days but for about a week a month i felt fine... but until i then stopped periods with the prostap i then realised just how much pain id been putting up with and felt fab for the first 5 months. but now i am so tired my bones ache my hair is awful i feel ive aged 10 years. im 49, i was hoping that i could just stay on this as i limp towards the normal menopausal age maybe with some add back livial(tibolone) which ive i not tried yet....they want to operate and remove everything do ureteric stents and likely to need a bowel removed too... my appointment in portsmouth endo centre is in 2 weeks i have no idea what to do and dread getting the periods back but hate aging before i need too.. i feel a shadow of my normal self...... and dont get me started on my memory some days i think i have dementia....

  • Hi jfh61

    Your story sounds so stressful for you. You have so much strength to keep going!. Im convinced it is the zoladex that has made me ill. My consultant says my bladder and bowel are all stuck together. They wont even consider a hysterectomy. I hope you get some answers and can move forward. Dont be forced into anything and vet loads of advice. Its awful going through all this pain but i agree that not knowing yourself and feeling like a shadow of yourself is so damaging. I totally feel your pain. Sending you much love xx

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