Endometriosis UK
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I would like to hear your experience with Zolodex injections.

Hi everyone,

Hope you all had a lovely pain free Christmas, hope you all have a healthy, pain free, new year 2016.

I went to see my surgeon last week and he has confirmed that my Endo and adhesions are back😞

He did an internal scan and I found it painful, he didn't like the feel of my insides. My ovaries, bladder and bowels are hurting all over again. I have been on antibiotics for over a month now due to having too many UTI. My GP thinks that by being on antibiotics for a month it will let my bladder heal and hopefully stop the bladder infection from returning. I'm still in pain, the pain is manageable but have noticed the burning, cramping pains are coming back.

My surgeon wants me to go on Zolodex injections for 3 months. Last time I had them it made my Endo worse and made the pains pretty unbearable.

I was waif anyone has had these injections and if it's helped them.

Sweety

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Hi just had my 5th today. First month was really horrible . Zoladex makes me severely constipated so I take Laxido which has been a god send, it also bought on severe depression (have suffered with this most of my life) but had never felt so desperate. Now on antidepressants although I'm currently weening myself off these. I now feel better than I have done for a very long time. Will yours be one 3 month injection or one every month for three months?

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Hi, thanks for replying back to me. I'm due to have my 1st injection next month, it will be for 3 months 1 injection per month. I'm already on depression tablets, and on antibiotics. Do you suffer from loss of appetite? I don't feel hungry at all and I have to force myself to eat when I start to feel shaky and weak. I've been diagnosed with celiac disease recently.

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Hi my appetite was non existent for the first month but it's fine now. I hope you get some relief with the Zoladex, but be aware that things will get worse before they get better. Hold in there. If you need any advise let me know.

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Thank you, will do

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Hi, I had my first Zoladex on the 16th December, after my lap, I had a large cyst removed, my right tube removed, I have been told I have severe endo it's on my bowel and pelvic wall. I have experienced terrible bone pain all over and the night sweats are terrible I'm emotional and get tearful at the drop of a hat. I went to see my GP yesterday because the bone pain is unbareable at night I can't sleep. She was brilliant and specialises in gyni she has put me on tramadol and zopiclone to help me sleep. Today I'm having a good day and as each day passes by I do feel like I'm dealing with it more. My GP said it can take at least 12 weeks to recover from the surgery but dealing with the hormonal consequences alongside can be unbareable and frustrating. I find the support from this site is like a life line at times because everyone knows exactly what your going through, their advice and support is fantastic. Zoladex will have differing side affects to each and everyone of us but you've got to try. Look after yourself get plenty of rest and take your time to decide what's best for you xx

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Hi thanks for replying back to me. I had Endo inside and outside sitting on my bladder, had it inside my bowels, on both my ovaries. My insides were all stuck together. I had hystercretomy done, and my left tube was removed. Been diagnosed with celiac disease now due to damage bowels. I don't really have a choice but to take the injections. I'm so fed up of having numerous operations due to Endo. Painkillers don't work on me, so I'm hoping these injections will help. Not looking forward to the side effects.

Sweety

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Hello Ladies, I hope you had a lovely Christmas.

I've had 2 zoladex injections since laparotomy & diagnosis of stage 4 endo on 6 Nov this year. Last injection to come on 5 Jan then scan on 14 Jan.

So far I've definitely experienced the hot flushes but they pass quickly. Oddly I've had moments of feeling calm. Seem to be ratty and feeling tearful at the end of each day but attributing this to low energy levels.

I have however had a niggling pain on my left side since the op a day injections: it feels like a cyst to be honest. It was bad today when walking round for a while and I feel wiped out and emotional. I'm due back at work next Friday. But already worrying how it will go as if my follow up scan on 14 Jan is OK there's a chance I'll be starting IVF straight away. Of course this is now panicking me no end and I'm not quite sure how to cope with it all :( X X X X

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Hi thanks for replying back to me. I'm already having low energy and feeling extremely exhausted, loss of appetite, trouble sleeping due to the antibiotics I'm guessing these injections will make my symptoms much worse.

I'm not working, I haven't worked in 6 years due to Endo and having so many operations every year since 2009. It's been very hard and stressful for me and family.

Sweety

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Hi everyone, thanks for replying back to me and informing me of your experience with Zoladex injections.

I know sometime in 2016 I will have another operation due to Endo. It never ends. My last operation was last year (2014) November and I was pain free for 6 months, then the pains started all over again, I feel like I'm never going to move forward with my life. Endo is really disheartening, stressful, depressing, and exhausting.

I really hope you all find some way to cope better, and hopefully have a painfree new year. Wishing you all a painfree, good health, good luck for 2016.

sweety

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Hello Sweety, I'm so sorry to hear you have had such a tough time with all of this :(. With everything that's been wearing you down recently, it may be the zoladex will give your body the break it needs for these 3 months and some much needed respite I hope. I know after my op, the surgeon was really keen for me to start zoladex to 'give my system a complete break' from the endo.

I see you've already had the injections in the past and unfortunately things didn't go well - I'm still learning about everything endo related but I'm not sure if your Surgeon might be able to consider an alternative given your past experience? Fingers crossed they should take absolutely everything into account before they begin any new treatment for you - at the very least they should be taking note of how you reacted to zoladex first time around. I will keep everything crossed for you X X X X

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Thank you, I will be speaking to my surgeon again just before having the injections and will ask if there is anything I could take other than these injections. I'm hoping that whatever I take will give me a break for a while. I'm just so tired all the time, even doing simple housework I feel so tired.

I will keep note of my symptoms and will let the surgeon know.

Thank you for your help.

Sweety

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I had a 6 month course of zoledex and it worked brilliantly for me. My periods and pain stopped after the first month and neither returned for 5 months after the course finished. I didn't take any HRT just managed the symptoms of the menopause as best as I could .

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Hi, thanks for replying back to me.

I don't have any periods due to having hystercretomy a few years ago. I still have both my ovaries although my left one is smaller than the right one. I'm going to try these Zoladex injections for 3 months and see how I go. I want to avoid having another operation for as long as I can.

I'm glad the injections worked for you. How are you now?

Sweety

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Hi I would like to warn about the possible long term side effects of having Zolodex injections. I had monthly injections over two and a half years to treat breast cancer 20 years ago. I was a "guinea pig" for the drug and informed that it would increase my chances of having children, rather than chemotherapy, and that I wouldn't lose my hair. However years after treatment I was told by my surgeon that he was 99% sure that the treatment had made me infertile. I had all the usual symptoms with the drug such as hot sweats, and early menopause, although the bleeding came back six months after the treatment stopped. However, I have had stomach issues ever since treatment started. During the treatment period I would often curl up into a ball in excruciating pain, and over the years my stomach pains, bloating, and diarrhea and intolerances to food have increased. I am at the stage now that I have had private intolerance tests done showing that there is hardly any foods left which my stomach can digest. The doctors never help and all they try to give me is anti-depressants, because I cry when I try to explain to them how bad things are! I have suspected for a long time that Zolodex is the cause of my issues, although the doctors will never admit this. The closest I came to an admittance was a year ago when a doctor replied to my question about could it have been the Zolodex injections with "it could be". Life is so bad for me now that I have to work part time from home because I need the money and its all I can cope with. I am scared to go out because I cant be too far from a toilet and it is so sore to walk any distance. People may think I should be grateful to be alive but I don't live I just exist. Please think very carefully because I don't want this to happen to anyone else.

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Hi, thank you for the warning. After reading your post I'm so glad I decided to stop having the Zolodex injections. I'm so sorry to hear about your problems. I thought my problems were bad. I mean apart from having endo everywhere I have adhesions, I have celiac disease, disc protrusion, thinning of my hip bones, eating disorder, bad depression, bad anxiety, sleeping problems. I'm in constant pain day and night.

I'm also scared to go out on my own in case I feel dizzy or if I need the bathroom which I am always needing. Like you I am not enjoying my life I am just existing, I have to live because I have children and they still need me. If they didn't need me I know I would have committed suicide a long time ago.

I'm due to have another operation to remove yet more endo and to remove both of my ovaries, my surgeon wants to put me on Livial tablets for my anticipated menopausal symptoms, to tell you the truth I'm scared of taking tablets like that because I'm worried about long term side effects on my body.

Sweety.

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I'm really sorry to hear of how much you are struggling too. I too have suicidal thoughts because I feel there is no reason to carry on anymore. If it wasn't for my lovely husband. I think I would have done by now too. I understand your fears of taking more medication. I am struggling with menopause at the moment too and I am not allowed to take anything to help because of the breast cancer. The flushes and mood swings are driving me mad.

If you ever want to talk let me know.

Take care of yourself x

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I didn't realise being a woman was so difficult. I used to love my life, but now I hate it. Sometimes I think men have it easy.

Glad to hear your husband is very supportive and is your rock. You need that someone to turn to when your having a difficult day.

I'm here for you to if you ever need to talk.

Take care.

Sweety.

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I know how you feel I hate mine most of the time too. I feel sorry for my husband as we have only been together a couple of years and I'm always too ill to do anything with him now. At least he is understanding the two men I briefly went out with before him both hated me being ill and couldn't bear to look at me because of my mastectomy, both physically and mentally hurt me.

I often try to push him away because I know his life would be better without me.

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That's so sad. My hubby hubby can be understanding one minute and the next he can be very hurtful. My hubby comes with me to some important appointments but he's not there for me emotionally.

I'm glad to hear your husband is very supportive of you.

Sweety

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Apologies for the late reply. If you ever need to talk things through always happy to be someone to lean on.

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Hi, sorry for the late reply, for some reason I'm not getting any notifications.

Thank you for your kind offer, I will definitely take you up on that.

Sweety

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Take care of yourself x

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Hi Sweetyassi,

I believe that it is my duty to warn everyone out there about the long term side effects of having Zoladex injections if you have been offered this particular drug.

I was given injections of Zoladex directly into my stomach from 0ctober 1996 for two and a half years for breast cancer. I have had terrible stomach issues which began with me often ending up crawled in a ball on the floor with excrutiating stomach pains during the years the drug was administered to me.

Ever since this began, on the numerous occasions that I have been to doctors and specialists about my stomach problems I have continually asked if they have been caused by the Zoladex injections but I have always received a resounding no as a response.

My symptoms have been like a snowball gathering speed down a steep hill. I now have had to stop working since November and on a good day I have diarreah 3-4 times in a day, up to 11 times on a bad day. I get bad lower and upper back pains, a lot of headaches, I have to wear pads when I go out, I have urinary accidents, if I try to walk too far I get sore and itchy, and I can often wipe and there is blood. I am so malnourised now and losing a lot of weight. This often means that I "space out" and cannot take in what is being said or what is happening around me.

Luckily I am now being looked at by a specialist who used to work at the Royal Marsden hospital in London. At long last I am being told that they are 98% sure that the Zoladex has caused my condition, but they cannot comment if the correct cause of my conditon not being diagnosed for so long would have given me a different outcome. The top specialist also says that Zoladex is a nasty and aggresive drug. Even if the outcome would have been the same at least being correctly diagnosed would have stopped the doctors giving me the wrong treatment for years.

The specialist tells me that my condition is a rare side effect from having the Zoladex injections. However, I would disagree with this statement. From my research I can see that Zoladex was approved for use by the FDA (Food and Drug Administration) in January 1996, and I was given my first injection in October 1996. I was obviously a "guinea pig" for the new drug. My first husband and I discussed it recently and we both remember the doctors being keen to push the Zoladex injections onto me, saying that I would not lose my hair and I would still be able to have children with me only being 26. I wasn't really bothered myself, and I had already prepared myself for chemotherapy, but you think the doctors know best. As it turns out a few years later, I was told by the hospital that they were 99% sure that the injections had sterilised me! With me obviously being one of the first to receive this Zoladex treatment for two and half years for breast cancer, I will obviously be one of the first to have survived for twenty years after this treatment. Therefore also one of the first to now show the malnourishment and weight loss effects of being misdiagnosed for so long.

I was previously diagnosed with IBS (Irritable Bowel Syndrome) for years, when all the time I actually had IBD (Inflammatory Bowel Disease) caused by the cancer treatment. I was often treated as if the condition was "all in my head" and was given antidepressants which I never needed for many years. One of my major complaints is about these antidepressants. I recently paid for my medical notes and was very shocked by what I read. They started me off with a mild antidepressant, amitriptyline, which I can understand because yes in small amounts this can be used to treat the IBS which they thought I had. However, instead of continuing to look into what was the real cause of my problems, they did a few test and labelled me as IBS saying it was "likely".

Then as time went on I was given stronger and stronger antidepressants, and lots of problems were caused when they tried to take tme off them too quickly, and then put me on them again. I am naturally a very a strong woman who has coped admirally with many bad moments in my life before I was given mood altering drugs. However, these drugs changed me and actually gave me the symptoms which they were supposed to cure. I was also shocked to see from my medical notes that when I went to see one of my doctors about perimenopausal symptoms that he actually put me down as suffering from anxiety. Even though another doctor gave me treatment for menstrual problems the month before. I obviously was perimenopausal because I have not had a period for years now. Please see the attached article about The Viscount, Luke Montagu. What happened to him in a lot of ways mirrors what happened to me by wrongly being given antidepressants;

dailymail.co.uk/health/arti...

Please make sure that you consider whether you wish to take Zoladex very carefully. Personally I believe this to be a very poisoness drug which needs to be removed from circulation.

It may be too late for me now. I am still being tested but the damage may be to great too fix, in which case I will just continue to waste away. I just want to ensure that this does not happen to anyone else.

If anyone has any questions that I can help with please do not hesitate to ask.

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Hi,

I’m so sorry to hear you went through all that because of Zoladex injections. It’s so heartbreaking to hear that there’s nothing out there to us, even taking medication is risky.

Thank you so much for sharing this with me, I really appreciate it.

Sweety.

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