Starting zoladex injections on Thursday .....worried about it

After years of surgery 7 x failed Ivf ,feel am at the end of my tether,been aneamic over a year,had ablation in aug....failed!, surgeon refused hystarectomy,as everything stuck down and in wrong place,won,t even attempt laparoscopy as to dangerous....I had a melt down last week and as I have been struggling to cope withworl(am a Carer) finally took GP advise and am signed off work,I start my zolidex on Thursday,worried about it.i have put on weight the last year or so as no energy and not been as active as I was am already depressed about my weight,the thought of putting on more terrifies me,but so does being ill,feeling very defeated at moment feel that endo has taken everything,not sure what to do for best love Jackie

18 Replies

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  • Hi Jackie

    I'm so sorry you are going through such hard time all these years.

    Have you thought of getting a second endo gynae opinion?

    You never know, someone else may have more knowledge, experience and another solution for you.

    Are you following the endo diet? it will help you to control the endo pain and your weight too.

    Jo x

  • Just awaiting appointment for second opinion @ women's hospital Birmingham,no not on the diet...but been reading about it sounds good,just I get so tired and down seems. Vicious circle.....so unmotivated,lost my job this week too,looking at this site has made me feel more positive,once my aneamia is sorted hopefully have more energy,love walking dogs but getting less and less,thanks so much for your reply only just joined up so was the first one xxx

  • Hi. I was similar. Had a frozen pelvis and my local hozy refused to touch me. I did have Zoladex and was worse after it stopped the side effects were worse than the Endo and I put 2 stones on. I asked for a 2nd opinion and they were NOT happy and kept trying to talk me out of it... one of the consultants even rang me up!

    Had excision at one of the specialist centres last year and the difference in attitude of the consultant was amazing.

    Any questions please ask.

  • Hi Sorry to here about the bad time your having.

    I was put on Decapeptyl to see if it helps. Although if as I have read u can only have for 6 months not really seeing the point. I had my 2nd injection 2wks ago at the mo I don't really feel better but trying to be patient. Suffering for migraines and extreme tiredness. Next step is a lap but must say on a positive note that I struggle with my weight I had just joine slimming world and after a slow start have lost 7lb in the last 3wk ( without exercise).

    My main prob that getting me down is the tiredness & constant pain in my back and my legs when I stand to walk I struggle to stand up straight and get moving so with that in mind can someone tell me what is a frozen pelvis , what are the symptoms and is it only diagnosed via a lap?

    Thank u . Hope you all feyel a bit better soon . At this moment in time I feel like I'm locked in some illness where u never get better . However I know things could be worse

    Mal

  • Thanks ladies that's really helpfull xxx

  • Hi Jackie! Please don't be scared! I am just at the end of a 3 month course of zoladex and its been great for me! It's not without side effects I admit but overall for me once your body adjusts to it you may really benefit! Remember that not everything suits everyone and you can only try! Exersize helped my extreme fatigue, controlled my weight and keeps me sane! Good luck with it if you do go ahead, let us know how u get on. Tracie xxxxx

  • Sorry to hear of your situation. I have had various surgeries too which include tubes being removed in separate ops and a few years later a lap and hysteroscopy where they found loads of endo and adhesions (scar tissue) and removed 'as much as they could' due to close proximity to bowel. I have tried Mirena Coil, Zoladex injections monthly plus HRT addback Tibolone. The Gyne told me that if Zoladex works it usually means it is endo causing the problem but if it fails then it is more likely to be adhesions at the root of the problem (sticking organs together - filmy scar tissue like wet spagetti is how he described it). Zoladex send you into oestrogen freefall by putting your body into a fast track menopausal state. Oestrogen feeds endo so the idea is to starve it of its fuel.

    Zoladex didn't work for me and yes it does give you some unpleasant symptoms consistent with menopause/PMT and in some weight gain, however, if it works its worth it in the end but definitely worth giving a serious go. Personally, if I was you I would search for a endo specialist gyne, not an ordinary gyne. They are few and far between but if you have a complicated problem they are likely to be better than an ordinary gyne, especially if endo is in the notoriously hard to get to 'pouch of douglas'. After attending a talk by a, Endo specialist Gyne a while ago, he seemed to favour a more radical approach to endo and adhesions. He said that unless you get every single bit out first time it is likely to continue to be a problem. If as is often the case it is on or around the bowel and bladder it gets complicated and some gyne's wont touch it for fear of perforation which is a genuine risk. That is why a specialist is best as sometimes they will work with a bowel surgeon if ressection is needed to aggressively remove all the endo and adhesions. As for your love of walking the dogs, I am with you on that too. I adore dogs and walking and it keeps me sane through all this but many days I am in pain or uncomfortable when walking. However, being upright is sometimes better once the endorphines kick in! Because of all the related bladder and bowel problems I am often nipping into the bushes! Sometimes when the pain is overwhelming I just stagger out with the dogs and sit somewhere with a nice landscape and the dogs seem to enjoy it too. I am on the verge of being referred onto a endo specialist surgeon. I am scared witless and have been putting it off but I know I can't go on like this forever, waking in pain daily with constant pain and symptoms not to mention the effect it has on me emotionally ie I have become a virtual recluse! thank god for animal friends.

  • Wow, I'm sorry to hear that you are going through so much!i am due my second operation on 10 December with my Endo specialist and bowel surgeon! A temporary colostomy bag may be in order, so I'm terrified, truly don't know how I will cope dealing with that every day!

    I hope you get the help and advice you need. Although I am terrified I have total confidence in my Endo consultant, she is amazing. Not sure where you live but you you could get to see her she is amazing. You can google her, her name is Caroline Overton.

    Take care

    Kelly x

  • Thanks juleyann so kind of you to take the time,your words are so helpfull,yes my dogs keep me going they make me get up and out even when I feel rotten,decided to go ahead with zoladex prob on Thursday,must admit feel anxious about it,got the name of a good surgeon will put it to my GP about being referred,good luck with everything and thanks again x

  • Hi Jackie sorry I can't offer you any great advice like the other lovely ladies on here but I can say that I too am due to start zoladex soon and I too am very nervous but i do know that everyone's experiences on it are different so I really hope they make some difference to you.

  • I did put on weight the second time however the first time I lost half stone over six months, the only thing I did differently was take sage tablets (for the sweating) so not sure if it was them or not but they did help. Also the zoladex helped with my pain a lot so I was just grateful for that. Good luck and best wishes x

  • Hi Jackie,

    I have had the Zoladex injections for 6 months now, and i was due for another 3 month injection yesterday but i decided not to have it. I had put on so much weight and my skin was so bad, i was constantly upset and crying and feeling really down so i have decided to have a break from the injection to see if it helps. Im only 19 so they were trying to save my fertility, all i can say is give it a go, you won't know until you have tried and some people find it helps them so so much and at the beginning it did help me too.

    Hope you feel better soon x

  • Hi ladies thanks for all your comments it means so much,I am thinking of not having my injection tomorrow,was going to leave it until after Christmas as we have a lot going on throughout dec and new year....was worried how I might be on the injection,at least without it i know what I am dealing with,then maybe have it in new year,just not sure what o do for best xx

  • Hi Jackie,

    Please dont be concerned at having zoladex. Im no long on zoladex treatment as inbetween operations and trying IVF, but i was on zoladex injections for around 3 years, and i have to say i have never been healthier or felt better. For the last year of my treatment i was also on HRT as after long term zoladex there are concerns for bone density etc.

    Good luck, x

  • Thanks for that x

  • Hi, I've just completed my 6mth course of Decapeptyl injections. It hasn't made me put any weight on. I haven't had any HRT and am due to see my consultant in Jan. Should be booked in for hysterectomy then. I was skeptical about these injections at first. I've had endo for 10yrs and nothing else has worked so I wasn't expecting this too. I feel as if I've got my life back. I've been pain free for the last 5mths and haven't had any bleeding for the first time in over 10yrs. Good luck x

  • So pleased to hear it has worked for you,and good luck with app in jan,many thanks for your imput x

  • Hi

    I'm sorry to hear about what you are going through. I'm on my 5th injection of Zoladex I've got the 6th one in 2 weeks. Now I'm not going to lie to you I have put weight on and it got me so down this is what brought me to this site I wanted to know if others were suffering with the same thing. I was recommended the endometriosis diet, I started last week and managed to lose 5lb this is just one benefit I now have more energy and my skin seems clearer and less dry.

    As for the Zoladex I recommend it I've had one laparoscopy but the rest of the endo has covered my bowel, since I can remember I have been in constant pain, ive been pain free for 2 months. I know this thing will come back but I'm hoping with t diet and a couple of lifestyle changes I will be able to manage it.

    Take care x

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