Next step after Zoladex

Hi.

Need advice on any other things to try after zoladex for severe endo. Zoladex has been so perfect for pain relief...however over the 6 months the side effects have been horrendous, especially the last two.i had been prepared to continue on but i now can't cope. Any other experiences or advice?

Xx

55 Replies

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  • hi, what side effects did you get?

  • Hi!

    Usual hot flushes etc but really worsened my depression over the 6 months to the point where i have been suicidal. Really serious psychotic behaviour. My hair has gone really really thin which is making me feel worse.

    I lost so much weight. Been vomitting. Been paranoid. I was totally pain free but then everything else has taken its toll. Its the low mood and hair now i can't cope with. I have diazepam on top of my other meds and the crisis team involved!. Horrific. Xx

  • I had hot flushes and bad mood swings whilst in Zoladex. I eventually had a total hysterectomy for my endometriosis and ademyosis and am on h.r.t. I can honestly say it's the best decision I made after years of failed treatments. I am pain free and no nasty symptoms.

  • i have been given diazapam too... regret taking those injections!!!

  • have you stopped the injections?

  • Sorry I didn't scroll down, I too lost weight, ended up 5&half stone and suicidal, was taken off zoladex immediately and had to take fortisip to gain weight but of course ended up in severe pain so was put on steroids for 9 months then back on zoladex but this time with HRT and it was easier x

  • Bloody hell.sounds awful. I have been on HRT with zoladex but still can'tcope. Gutted because i love being pain free. Have just been washing my hair crying as it just pulls out. I am convinced it is that drug x

  • I couldnt take the HRT it made me nutty and stressed

  • hi leese16, how are you feeling?

  • Hi! I am still really stressed. More hair has come out. Fed up. How are you x

  • hi hun, still the same too.. lots of anxiety and lots of hair falling out....this is all pathetic.

    i dont know how to cope

  • Its not pathetic. Its a worrying time. Hope u get sum answers soon x

  • Hi. I had the same problem lasted 5 months but couldn't take the side effects any longer. I'm now only taking paracetamol again. Had my last zolodex at the end of May had my first period in a year 3weeks ago which was horrendously painful. Hoping this next one won't be as bad. I've made dietary changes and am trying aloe Vera juice to cleanse my bowel the week leading up to my period (if its regular) as my left ovary is tuck to my uterus and bowel. Hoping this will reduce the pain if my bowel is clear. I take various vitamins and supplements which may help too. I can't have surgery as my insides are so mangled it's too risky and complex even for bgse. I'm also having acupuncture which helps with some symptoms of which I have many. Good luck xx

  • hi bethleah, what side effects did you get?

  • Weight gain, joint pain, increased dizziness, increased wooziness, foggy brain (zombie like), worsening insomnia, hot flushes, heartburn, indigestion... x

  • How long did it take for the side effects to go away after stopping the injections?

  • A couple of months for the zombieness to improve and to be able to lose weight. I had hrt with it but lasted 4 months as it did nothing for me. I was still very tearful so I made up Bach flower remedy which helped with this as well as coming off the mess. I also had really bad nausea which ginger tablets helped with. About 2-3 months before the difference was noticed. But each of us is different. Before the zolodex I was on cerazette for 8 months which was awful. But I tend to experience the side effects more than most. This is why I only really take paracetamol for the endo. X

  • Hi!

    It's awful that taking something for the pain causes all the other problems. I wasn't told about how my depression could be made worse. The hospital kind of glossed over that one. I literally wanted to kill myself last week. Sat in the middle of a road in my pjs. It can only be this drug that has caused everything to go wrong and these mad episodes. All coincides with when i started the injections. My hair getting thinner and thinner is final straw. I am dreading the pain coming back but there has to be a better alternative to living like this x

  • I agree. They don’t tell you bad stuff just that it’s great. I wonder what kick backs they get from the drug companies to prescribe this evil stuff.

  • i was told ' a few menopausal symptoms' and its been 2 months since i stopped the injections... i have depression, hair loss, brain fog, confusion, major anxiety.. its really hard to deal with it all!!!

  • I get you. Try biotin to help with the hair and other supplements to help with other stuff. Meditation or yoga can help with the anxiety. Try milk thistle to help detox and get the drugs out of your system quicker along with aloe Vera and probiotics. X

  • Its taking such a long time to get the drugs out my system... I had 8 injections too!!

  • It’ll take time your body has to get rid of the drugs while still dealing with Endo and all the inflammation etc. You need to be gentle with yourself. X

  • im just hoping the anxiety goes too

  • Me too. Xx

  • I got some biotin and i take other vitamins. It sounds so vain but that was final straw that made my depressive episodes worse xx

  • Cut out fats, gluten, lactose, melon, increase soluable fibre like prunes, plums, Rhubarb. Reduce sweets and added sugar and no soya products or beer! Get some Good bacteria tablets from Health food shop. Remember Vits only work proply if Vit C is taken at the same time!

  • Hi I already do all this. Thanks

  • I took zoladex on two occasions; once for six months and then for two years with HRT. It was a temporary fix but not perfect or without its own issues. The only thing that's worked for me is the mirena coil.

  • So jealous the mirena worked for you. My doctors really pressured me to try it because I was sceptical and I ended up having 14 day periods in 28 day cycle. I didn't throw up when I got my period though.... But yeah I didn't think it was worth the trade off.

  • Hi, I had zoladex quite a while ago now. I found it to be a double edged sword. It's like trading one set of problems for another set of problems!

    I also experienced lots of side affects. I was given add back HRT to help (Livial) which helped a lot! It was a very difficult period of my treatment, a low point which was very hard at the time

    I have since had a couple more surgeries, I had endometrial ablation done and after that failed I opted for a total hysterectomy. That was 4 years ago now, I take HRT and am happy to say I'm pain free.

    I really hope you can find a treatment which helps, or at least side affects which are manageable for you x

  • You sound like you really have been through it! So pleased you are pain free!! I am endo pain free on zoladex its just i cant live with my depression how it is and then my hair has started to fall out. Getting thinner and thinner. I bumped into somebody last week who i hadnt seen since before the injections and she almost didnt recognise me. I cant go on like this. My review appointment is in monday. Xx much love xx

  • You poor thing! Have you tried mini pill? (Progesterone only pill)

    It worked for me for a while, stopped periods completely for a good few months, gave me a break from the cycle of endo pain.

    Let me know how your review appointment goes. X

  • Hi. Thanks for your reply! I haven't had a period for two years. I had an ablation which stopped all bleeding which is great. I lasted another year trying cope with pain and then tried the zoladex. Will look into this. Have a great week xx

  • My experience of the pill was it worked for 2 yrs then I found my body was making more hormone to counter act the Pill and then was worse for mths after coming off the pill then it calmed down again

  • Hi Lessie16... The depression is the worst thing and the hair thinning... How many injections have you had?

  • I have had 6. I wanted to continue them but everything has come to a head over this last month. I kept a diary and its amazing ive been pain free but other changes are just too massive and too upsetting to ignore. X

  • have you been getting severe anxiety like shaking

  • No just suicidal thoughts and crying.

  • Hi Leese16 (& Rajsam), I tried to reply to you both in a previous thread but it seems to have disappeared. GnRH Analogues/Agonists like Prostap or Zolodex are known to induce severe neuropsychiatric side effects in some women (this includes suicidal depression and anxiety). The manufacturers' advice for any women suffering mood changes while undergoing treatment is to seek support from your GP or Specialist - it their job and their responsibility to help you cope with such side effects until whatever time they are appropriately treated/subside.

    Leese I don't know if you've already done this, but you can download the manufacturer's guidance for Zolodex here:

    medicines.org.uk/emcmobile/...

    I really would urge you to print this guidance off, give it to your family/close friends to read and also take a copy along with you to your appointment on Monday. The safety warning regarding severe depression is quite clear and should help you get the message across that Zolodex has very seriously impacted upon your psychological wellbeing.

    In the meantime you are not going mad, you are just experienced very very unpleasant drug side effects. They can be treated / managed until they subside. Be kind to yourself if you can until Monday - watch some of your favourite movie tucked up on the sofa - or have a cuppa and some cake with a friend or your family. And remember that you are not alone, there are lots of us here online to try and help where we can, x X x

  • Hi NoEndoInSight Ive only just read your reply to my post. Thanks so much for your advice and kind words. My appointment was a waste of time. They discharged me because i refused to try the depo injection then and there, even though i was sat totally hysterical trying to explain how stressed and worried i was. They said to go away, sort my mental health out and go back if i wanted to discuss getting the depo injection. If they had read my notes they wouldve known id triedthat before. Everything they said made it clear no one had read my notes and they were all giving me conflicting info. They said if i was refusing help (!?!!) they would refer me back to my pain team for a longer term solution....i dont have a pain team. They never got me a team in the first place. I was told the zoladex was the next stage of treatment and thats that. Had i have known then what i now kno, i wouldve just tried pain management. Im starting to try to settle my mental health a bit now but its so hard. Im still having panic attacks etc. My hair is still thinning. My joints ache. Im seeing a dietician now to try keep my weight up. I kno the endo pain will come back so thats always hanging over me. I just dont want any more synthetic hormones. I need this drug out my body asap. Hope you are well and thanks so much for your reply. Sorry if ive rambled on. Xx

  • Hello Leese16, I'm so sorry to hear that you've still not been able to access appropriate and effective support from your specialist either for your underlying Endometriosis symptoms or to help you recover for the mood changes you suffered while on Zoladex.

    I was wondering what your relationship with your GP was like? The European Medicines Agency report (which is the report which highlighted the impact GnRH Analogues can have upon a patient's neuropsychiatric health) can be found online here (pages 1-7):

    ema.europa.eu/docs/en_GB/do...

    This report prompted the manufacturers of Zoladex and other GnRH Analogues to update their Patient Information Leaflets and the Special Product Characteristics to include warnings about the risk of neuropsychiatric side effects such as severe depression. Anyone prescribing or administering a GnRH Analogue should be aware of these potential risks and be ready to offer their patient appropriate and effective support should that patient start to suffer any such side effects.

    In an ideal world your GP should be acting as your health advocate and be helping you to manage both your Endometriosis symptoms and any side effects you suffer when prescribed any NHS treatment for them.

    Can you book a double (i.e. a long) appointment slot with your GP to talk over all of this. Maybe take someone with you who can help explain things if you start to feel overwhelmed and upset? Also take a printed copy of the European Medicines Agency report and also a copy of the Zoladex' Special Product Characteristics from Medicines.org.uk:

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

    That way you can say to your GP: 'I was prescribed this treatment and I developed severe depression/mood changes, which is a documented side effect of this treatment. These mood changes are not only distressing in themselves, but they are making it difficult for me to clearly and calmly communicate with my Endometriosis specialist or correct errors being made regarding my treatment history. I need your help to explain that Zoladex caused me to suffer severe neuropsychiatric side effects, that I have already unsuccessfully trialled the Depo-Provera treatment they wanted me to "try", and that I don't have a pain management team for them to refer me back to."

    Do you think you would be able to ask your GP to help you with this? Or if your existing GP has not been great so far, could you maybe try seeing another GP in the practice? Perhaps try one who specialises in Women's Health / Hormone Treatments (or even one who specialises in Men's Health as GnRH Analogues are also prescribed for Prostate Cancer and there seems to be more awareness of the impact these drugs have upon mood among Men's Health charities and clinicians).

    Remember, you are not alone so please don't feel you need to apologies for venting. I really hope things pick up for you soon.

    x X x

  • Thanks again for your reply. My gp has been useless. We are changing gps once my pain team referral has gone through. The system of actually getting an appointment is a farce. I have wrote to the consultant/hospital and explained whyi feel upset and how i think i have been given very bad advice. I think they knew i am already involved in mental health services that they needn't be concerned about it. My support worker and CPN are being helpful now. Its my hair thats causing my low mood now. When the endo pain kicks back in i def need some sort of plan and i will ask ti be referred to a diff hospital. Thanks so much for your advice. I dont expect to get a reply or reaction from the hospital.hope you are well xx

  • Zoladex is great to help with the major pain for a couple of years but I took it 10yrs non stop. It lower my hormones so low that I cemented mentally ill and depression started. I got brain fog was crawling around of the floor, some days I didn't know what day it was or couldnt be bothered to eat, wash, or contact anyone, dropped to 5 stone,went flat chested and felt worthless

  • hi, when you had Zolodex, how long did it take for the side effects to go away after stopping. Im scared that Im left with permanent side effects.

  • Hi, I've been on Zoladex now for nearly 5 years. I manage with the side effects although it can be difficult. However, I also take a daily tablet (Arimidex) which I've been on almost 11 years. It works in a different way but does a similar thing as Zoladex, blocking Oestrogen.

    I've had multiple radical surgeries in the past though nothing recent. My consultant doesn't want me to go through any more. It doesn't provide long term solutions for me.

    You may find Arimidex easier to tolerate.

    Good luck, such a rotten illness. xx

  • Im gutted i cant cope with side effects of zoladex so i do need an alternative. I want my body back to normal as soon as poss, obv the endo will be back...but im not myself. I look frail. Hair falling out. Manic mood swings. It needs to stop. Sending much love x

  • Hi, I was on Prostap (similar to zoladex) for about a year - it stopped the pain but I also had depression and insomnia - HRT helped. After that, I got a new consultant who was more open to my suggestions - I asked if I could try Depo Provera injections - Ive had them nearly 2 years now, no longer have periods and no pain - yippee! I've been told to have abone density scan soon, as it can affect that. Also it took around 6 - 12 months for everything to settle down - I had some random bleeding and periods for awhile, but I am a changed person now - I can plan ahead for once in my life, knowing I am not going to be in pain!

  • I was given zoladex on and off for 16 years. For the first 2 years it made me ill but then I was put on HRT and that gradually eliviated the symptoms. At some stage I was put on danol (danazol) but I found it worse than zoladex x

  • Hi leese 16. I am so sorry to hear you also have depression and hair loss on Zoledex. How are you feeling now? Consultant helped? I too am on Zoledex. I have only had 5 but I am going through all side effects bar losing weight. In fact I have gained, bloated and my breasts have also got bigger. I due back to see consultant next month and I am nervous what my options will be as change each trip as never see same consultant twice. I have been advised to look into option of removing my ovaries but I am only 38 and I am unsure if this is right for me.x

  • Hi LH38, thanks for your reply. Side effects are so hard to cope with when you are taking something to make you feel better. Sounds like you are having a tough time with yours. Its so bad that we all see different consultants every visit. It means they dont really know you or your case very well. When my endo flares up again, which it will do, im going to ask to be referred somewhere else. Sounds like youve got a lot of decisions to make coming up. Dont feel forced into anything and get as much help and advice that you can. Also think about if you would like to have children etc etc. I wish id never taken zoladex. Hope you manage to get some more helpful advice xx much love xx

  • I found great help going privately for help, the only trouble is if diagnosed privately none of my notes on NHS so years of trial and error as no dr's took into effect I had told them I had endometriosis. But possibly idea if you have the option. I have had one child, now 13. I had a miscarriage trying again for years that my husband said enough was enough. It's taken a while for me mentally to be in a better place but I now am confident I am ready to never have another child. I have two lovely dogs who are my child replacements and one 13yr old and a husband more than enough for me 😊. I hope you stay in touch. We'll all be up and down through it. Jittery days to ok ones xx

  • Hi LH38 Yeah no doubt i will be back on here with another moan. The hospital just discharged me cos i didnt want any more hormones. I dont have children. My partner has a 20 year old daughter and i have my 4 year old cocker spaniel. He is my baby!! Must be more stressful if you really want a family, i never saw myself with children, ive struggled with my health from my early 20s, had relationship and mental breakdown, i just thought it would be selfish of me...if that makes sense. Your husband and family sound supportive. Im sure i will pick up again soon, sounds vain but its my hair and these moods i just cant cope with. Trying to be kinder to myself. Much love to you and yourfamily xx

  • I sympathize regarding hair but stress also increases the loss. Good diet and vitamins and not straightening mine it seems better. Lots of yoga and dog walks I find keep me sane... just 😊 x I hope you get support you need. Here if need sounding board x

  • It was 15 mths before I settled down on it but it was still better than without. The thing that happened once my estrogen depleted and I was of a age when my menopause started, I started depression but once 6mths without it I started to feel better but the pain returned, I now take codiadrdamonal or morphine, I cant work and there is no sign of Endo symtoms, pain going or the damage its caused to organs and the digestive, bowel, bladder, or walking difficulties when I get inflamed, or stools refuse to leave. I have changed my diet too, cutting anything that has asthimines, lactose, gluten, soya or pips. I eat only soluble fibre and dont eat large meals but 6 small snacks. Good Luck.

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