Side effects remaining for years after a long course of zoladex? Help!

I'm afraid this will be quite long but I'm in desperate need of help - has anyone had aong course of zoladex and continued to have side effects years afterwards? I haven't been able to find a single person who is also going through this and I feel so alone.

I started suffering with endo symptoms in 1994, age 12, and was finally diagnosed in 2004. I have relatively mild but widespread endo and have had tried every option available to me in terms of surgery, hormonal treatments and pain relief. I've had 5 laps, the most recent in August where they fitted a mirena coil which is causing unbearable pain and depression, weight gain etc. I agreed to keep it in until February but then it's coming out.

The thing that's concerning me the most are the after effects of a course of zoladex. I started it in 2007 and it was incredible - it helped my pain and massively improved my fatigue. Because it was the only thing that had helped me, my endo specialist kept me on it indefinitely - he warned me that it could affect my bones but I was willing to take that risk. About 8 months in, I started to lose my libido alongside all the usual side effects. This gradually worsened until I couldn't do anything physically intimate at all - some incidents in my childhood didn't help, but they didn't cause me any problems until my libido went.

I stayed on zoladex for 2 years - at about 18 months it stopped working as well and gradually deteriorated until it was just side effects and no help. I'd moved by then and my new gynae suggested I stop it. I went straight into tricycling the pill as my periods are so horrific I didn't want them back!

Most of the side effects stopped quite quickly, within a month or two, but my libido didn't return at all. During breaks from the pill, I'd get hot flushes, night sweats, mood swings etc again. I was worried I was in the menopause permanently so I went back to the gynae - he said it was just because I'd gone straight on the pill and my body hadn't been able to return to normal. Around this time, I had to leave my job because I was so ill and my husband and I moved back to my home town. Once I'd stopped working, I stopped the pill for as long as I could manage - after about four months, it was clear my endo was spreading but there was no sign of my libido so I went back on to the pill.

I saw a new pain specialist who mentioned in passing that the high dose of morphine I take affects my hormone production - I am trying to reduce it but it's hard as I'm in so much pain and I don't know if that's the problem since I had no issues until the zoladex.

It's now been 3.5 years since I stopped the zoladex and this problem hasn't improved. I was starting to think it was all psychological but about three times in the last couple of years, my libido has come back on its own for about 48 hours and then gone again. I can immediately tell the difference when it starts and stops and I'm able to be intimate with no problems - then it goes again. This suggests to me that there is a physical problem.

When I saw my current gynae for my lap follow up in December, I got up the nerve to ask to see someone about my hormones and briefly explained the situation. He said they could do a blood test there and then to check my hormone levels but he didn't think it would show anything. I asked if it was okay to do the test when I have the mirena coil and he said it wouldn't affect it. After I left I realised that these tests are meant to be done at a particular point in your cycle but obviously with the coil I don't know where I am.

Last week I got a two sentence letter saying my thyroid and hormones are normal. That was it - no suggestion of doing anything else, no help, just that there's no problem. I wish this was true! I don't know what he tested for or what the results were as he didn't tell me. I don't know if there's something he didn't test, if the coil affected it, it was the wrong time or of he didn't know what he was looking for but I'm certain there's a problem with my hormones, otherwise I'm going insane.

I don't know what to do now - I want to go and ask my gp for a referral to an endocrinologist but I'm worried that this hospital letter will prevent them from agreeing to send me. This is causing serious issues in my marriage and I need to know why this is happening and try to fix it.

I've been looking since 2009 and I haven't been able to find anyone who is or has been in a similar situation after a longer than recommended course of zoladex. Is anyone else going through this? I feel like I'm going mad and that no-one understands, and the doctors don't seem to care. The pain and fatigue are bad enough - I don't need this as well. I just need some answers.

If anyone has been there and knows what might be causing this, I'd be so grateful to hear from you.

Thanks

x

24 Replies

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  • I've been off zoladex for 14 months, and yes I too have not yet got back to normal. In my case the overwhelming side effect that drives me up the wall has been my loss of short term memory. It has improved slightly, or perhaps I am more used to finding ways to cope, but essentially it is so radically disabling from what memory skills I had before that it troubles me several times a day. I just cannot retain even the most important bits of information, like it's my turn to pick up the kids from school. Or I've left the cooker on. Really can be very alarming and scary to have this worry everytime someone tells you something important or you start doing something that could be dangerous, like leaving the iron on.

    On the pain side, I have been okay, I do have a working mirena installed that has stopped my periods YAY!

    But I do understand and sympathise with you. I do try and warn the women on here about to use zoladex fo the 1st time that they must only do so when they have fully read and understood the consequences, because the drug is so powerful and potentially very damaging indeed. And Doctors simply do not pay anywhere near enough attention to warning their patients in advance of what zoladex can infact do to you, long after you have stopped taking it.

    I wouldn't touch it with a barge pole ever again, nor would I recommend it to anyone else.

  • Thanks for your reply - have you told any of your doctors about this and are they vaguely interested? It seems they're happy to give us drugs with side effects but not too concerned when something like this happens. I too struggle with my memory since the zoladex but not to the same extent.

    I have to say, in my case, I thought it was an amazing drug and for the first year it was fine - if I'd only had a six month course I suspect I wouldn't be having these problems. I wasn't warned that the side effects could continue long after the course was finished and I had never spoken to anyone else who had been through this either.

    It probably sounds like a minor issue to lots of people but it's causing such a huge problem in my marriage and I don't want to lose my husband over it - it's not just not having sex, it's the total lack of intimacy and it's causing so much tension and resentment on both sides. I don't understand why it's happening so I can't even explain it to him properly.

  • hello, can you email me catrom2@yahoo.com - I'd like to discuss your situation.

  • I'm only on my second lot of Zoladex went to the computer at work couldn't remember how to find the Internet on it! Feeling really tired with it! X

  • It's strange because everyone reacts so differently on it - I have chronic fatigue and it got a lot better on zoladex, plus I lost weight when I know others who put it on. It's really unpredictable.

  • Cool, were you normal weight before taking zolodex?

  • it sure messes with your brain...no doubting that.

    I was a lot more tired on it than off it, and i didn't gain weight, but then i was sleeping so much and forgetting i hadn't eaten. One small bonus.

    And my GP said the memory loss would either slowly recover or wouldn't. There isn't anything he could suggest to improve the situation except to write lists... and that's only any use if you can remember where you put the list and what you wrote was sufficient to remind you what it was for.

    e.g pick up kids at 4pm. (doesn't say where from or which kids, or where they needed to go afterwards.) My lists have to be so detailed to be of any use.

  • Yeah, I make lots of lists too - I have lists of lists! I've now started adding in setting an alarm on my phone and writing what it's for so it flashes up, saves me from having to remember to check my lists!

    Do you have any other symptoms that would suggest your hormone levels are off? It seems to me that there's a possibility that the effects of the zoladex haven't gone away completely, but if you have no other symptoms perhaps it's damage rather than an ongoing problem. What a nightmare, I'm so sorry.

  • I'm so sorry to read about your problems. I don't think gynaecologists realise that by disrupting one hormone, it also disrupts the entire endocrine system which is very finely balanced. Strangely enough my daughter who has recently moved to USA has been referred by her gynaecologist to an endocrinologist (but then that's America and health insurance rules!)

    Could you possibly afford to see an endocrinologist privately? You should also ask for a copy of your blood test results which you could take with you. I used to struggle to pay privately but I always felt listened to in the private set up.

  • Unfortunately I can't really afford it - I had to leave my job a few years ago and I'm not well enough to get another. I have my own very small business but it doesn't make much money, especially at the moment and my husband is having to pay for everything at the moment so money is a bit tight.

    I'm going to take my husband to see the GP with me - hopefully they'll listen a bit more if he backs me up. If they don't take me seriously then I guess we'll have to find the money from somewhere.

    I think the most upsetting thing is how disinterested the doctors are - either they don't believe me or they don't care. I told my gynae at the same appointment that I've been having excruciating contractions since the cool was put in - his response was that he doubted it was the coil. That was it. He didn't examine me to see if it was in place or send me for a scan, or plan to look into the pain to find out the cause if he thinks it's not the coil. He then said I should give the coil a few more months to see if things settle. Either he isn't really listening or he doesn't take me seriously, or he doesn't care. I realise he must see people in a much worse state than me but that doesn't mean I'm not suffering - I have no life between the pain and the fatigue. I don't think they understand that we wait anxiously for month's for these appointments and what happens is so important to us - seeing us for a few minutes and brushing our problems aside isn't really good enough.

    It's not even worth me asking for a referral to a specialist (the hospital I'm at is now meant to be a specialist endo centre although I've only just found this out - they are far from specialists!) as I know there's nothing they can do - I've already tried every treatment and had 5 laps so it's a waste of everyone's time, especially as my endo isn't severe and my pain is most likely nerve related,

    Honestly, I think it troubles the precious egos of these doctors when they can't fix us so they just don't want to know - the gynaes want patients with fibroids or cysts that they can remove and improve the patients life. They don't want people like me who just stay ill whatever they do.

    I'm hoping the gp will have been sent the actual test results so I can get a copy otherwise I'll have to go via hospital records. I don't understand it - I'm certain there's a problem with my hormones. If that's true, how could he test them and say they're fine? All I can think is that the coil has affected the results, or there's a hormone he didn't test for, or he doesn't know what he's looking for. I'm sure they're meant to be done at a particular time in your cycle and I thought it had to be repeated at another time to check for the changes in levels that show you're actually ovulating and that things are normal. Maybe I'm wrong - he is the doctor so I should probably listen, but it doesn't make any sense to me.

    Sorry - I didn't mean to rant again. I'll update when I've been able to get an appointment with my gp.

  • Cupcake girl thank you for bringing this issue out, in January 2010 I was diagonized with endo I was 27 full of life. I didn't know anything about endo I was on hospital for a different condition but I was complaining of pains in my tummy they ran all test including cancer but they sent me for some scan and X-ray just to know what was wrong with me. After d result came back they told consultant who treats endo, cos I was in dangerous place cos d tummy was making my other condition bad. D consultant came to d ward to explain to me that I have d worst endo he had ever seen and he told me I will take zoladex for 6 months and will need 3 or more lap to help me. When I stopped d zolDex my period didn't return for a year, before I sound d alarm I went back to gyno who said my body will get back to normal he gave me microgynon to see if it will return my period. My partner and has been ttc for like 5 years so not having period means we can't reAlly get pregnant. Then I started having these shin pains that could make me go insane, no painkiller was working and I was taking heavy dutty painkiller like oxycodone, fentanyl, diamorphine. After my research I realized one side effects of zoladex is born pains. After no period we were refer to fertility. I am sorry I went d long way pls understand me, so 4 years after stopping my treatment my period hasn't return so cupcake girl I feel your pains we human are different and that zoladex strewed me over. I believe my body will be normal again after d drug wears off. I believe the doctors should tell d patient that minority of d people who had it for treatment are having problem with d side effects years after. Their last dosage

  • I'm so sorry you've had so many problems with zoladex - if it's any consolation, I think even an endo specialist would have recommended the same course of treatment in your case, as if the endo is so severe they would struggle to remove it. That doesn't make the symptoms any easier though. I should also add that it gave an almost normal life back for a year or so.

    Firstly , you need to get a referral to an endo specialist who can perform excision surgery if you haven't already. That is very important if your endo is so bad.

    I'm so sorry you're still struggling like I did. It's so terrifying. I initially told my husband not to worry, that my hormones would go back to normal... But over time I lost confidence in that and started to believe I'd never have normal hormones / sex drive etc again.

    My hormones have improved - the only way I know is that my libido returned in October. I had a month long bleed in September so decided to take a break from the pill. After a few weeks, I felt my hormones shift - my libido returned and my skin is worse than a teenagers. I don't think things are totally right - my cycle seems to be much longer than before - but it's definitely better.

    So it took over 4 years from the time I stopped to things starting to get better. However, I was on it for 2 years so things were really screwed up in there, and I've spent almost all the time since on the pill or with the Mirena coil.

    I had tried coming off the pill a couple of times to see if that helped but it didn't, but the last time I tried was before my coil went in in 2012, so it's possible that it could have sorted itself out sooner.

    Personally, I would have thought that the pill would be stopping your body from returning to normal but that's just my theory. Based on my experience, if I'd been able to stay off the pill the whole time, I think it might have come back sooner but I can't know that. My endo would have probably gotten a lot worse though.

    I wish I had more answers for you but ask your GP about having your hormone levels tested and ask them to refer you to an endocrinologist if that doesn't tell you anything.

    Give me a shout if you want to talk x

  • Thanks for the reply I did all hormone test which said my estrogen was low and LH AND FSH were normal only to repeat d test a year later which says all my hormones were low. During those time I was a moment away from suicide but thank God for my support system. My endo went quiet since I had d treatment even though I still get the pains. I was given HRT to help with my low estrogen before I was put on it I don't have any strength, I was forgetful, tired. I went on d HRT to help get my body back to normal exactly 4 years since I first had d injection I had a bleeding which feels like my period d first blood was dark like chocolate and started going red but since I haven't had period in 4 years I can't tell the difference. And maybe I have accepted that I would never have period again cos that was what d doctors told. Cupcake thanks for the offer but you have helped me by writing that your body hasn't got back to normal after 4 years in my head I thought I was d only unlucky one with this horrible side effect from zoladex.

  • No, you're definitely not the only one. I thought I'd gone into early menopause or something, but that didn't make sense with my symptoms. I was having withdrawal bleeds on the pill but I can't remember how long it was before my periods came back it was definitely a while.

    If your blood tests are showing problems with your hormone levels, they should be referring you to an endocrinologist for further investigation and help - they are hormone specialists so should be able to help you. They also need to check that this is caused by the zoladex - it could be something else and it's being missed.

    You could have a look into some of the herbal remedies that are supposed to induce a period (things like raspberry leaf and pennyroyal). I know some affect hormones and some cause uttering contractions so you'd need to do some research.

    I had resigned myself to never going back to normal but I did - or at least things are better, I'm not sure if they're normal. I'm thinking of buying an ovulation kit to see if I'm ovulating since the docs aren't interested.

    How old are you? Do you have lots of time left for TTC? If it were me. I'd try to reduce stress as much as possible as this affects periods, make sure I am a healthy weight and have a healthy diet and consider stopping any hormone treatment so my body child sort itself out. You need to decide for yourself obviously.

    All the best to you xxx

  • Thanks for your reply am 31 and African in my culture being in that age and not a mother and wife yet it's kind of stigma. Yesterday I had a lecture from older sister about what am I doing in regards to marriage and kids. I have been with my partner for 8 years but we broke up inbetween and he

    had a child. We have been ttc for about 6 years now and from the fertility investigation I have low ovarian reserve combine with my

    endo and they said our only option is ivf. Last year the pressure and stress was too much on me and our relationship so we made the decision to take a break so that I could heal mentally and take the pressure off our relationship which was a very good ideal. Cos I believe if am going to go through ivf my body and brain must be in the same place. I have also accepted that since zoladex started a chain reaction my body might not be normal again. Hopefully very soon we will go back to the fertility cos after taking a year out I believe we will be ready to face treatment

  • Wanted to update for anyone who's since come across this as I know there's not much info about this out there.

    It took me a year to get my mirena coil out - rye gynae cut the strings too short and it had to be removed under general. It was very traumatic to say the least. Once it was out I went back on the pill for a few months but I had a month long bleed and decided to take a break.

    My libido came back within a couple of weeks of stopping the pill, like a switch being flipped. It hasn't gone away for the last four months although its settled slightly so I think it's here to stay.

    If anyone has similar problems, push hard to get answers - I was in hell for almost five years after I stopped it and no-one cared. Stick up for yourself :)

  • Hello ladies,

    I just came across this post- posted 2-years ago.

    I first used Zoladex when I was 23 I am now 38. I thought I was the only one who had suffered severe, ongoing side- effects of absent libido until I read this post today.

    To date my libido hasn't returned and I would strongly advise anyone having this treatment to research the side effects first. I was once in a long term relationship which sadly ended which I belive was a result of my problems.

    I took it in total over a course of four months but noticed a change within the first month, to date the problem is there and so far medics have not been able to find a solution.

    I would love to hear from any of you.

  • Hi there, it was me who posted this. I've spoken to lots of other people who've been on zoladex and have only heard of a couple of people who've had this symptom continue long after finishing zoladex so it seems to be very rare but it does happen. It gave me my life back for a while and allowed me to continue with my career for years, but it did cause my problems for a long time afterwards.

    I'm so sorry that you've had this issue for such a long time, I thought five years was bad. Did you say you were only on it for four months? The others I've spoken to who had this were on it over the six month limit like I was.

    Can I ask, when you came off zoladex did you go on to another hormonal treatment like the pill or anything else? I went back on the pill as soon as my periods returned. A few years later I had the mirena for about a year, then went back on the pill when that was removed. I tried to tell the doctors there was something wrong with my hormones but no-one would take it seriously. In the end I came off the pill and have taken nothing hormonal since late 2013. As I said, my libido returned within about a month and has not gone away since although it is lower than it was when it first came back. My GP eventually agreed to test my hormone levels, they only did a day 3 test and by then my libido was already back - it showed everything was very low in the range. My hormones still aren't right - I barely eat but I'm slightly overweight (I went down to about 7.5 stone on zoladex, I'm now about 10.5 on an identical diet with the same amount of exercise), I get acne all over my chest and back especially near my period, I have awful mood swings etc. Clearly things still aren't right.

    If you are still taking the pill or anything like that I would stop it all and give yourself at least six months off to see if this improves - after such a long gap it may take time to work, if it's going to work. My Endo has gotten much worse and I've developed adeno but I feel much better now this issue has resolved and my hormone levels are stabilising.

    If you have any questions, please ask x

  • Hi, I had Zoladex for a year just over 3 1/2 years ago to help with endo on my overies after having lap excision of endo twice & hysterectomy. The Zoladex helped to start with. I stopped the injections after a year as the benefits there at the start were no longer helping & was sent for a dexa scan to check bone density which was normal. I went through a nasty divorce straight after due to DV. I found out a year later I had a severe herniated disc at L4/S1 on my back after being slammed into a door handle, I was not sent for an MRI for a year due to the normal dexa scan & was told pain in back was mechanical. Anyway I had surgery on my back a year after it was diagnosed which didn't work. I had trapped nerves which are now damaged causing severe siatica, numbness & tingling. 3 weeks after surgery I also developed DVT & 2 pulmonary embolisms. I am now 3 1/2 years on & I have oesteoarthritis throughout my back & neck, I have had a second clot since being on warfarin & I take a cocktail of medication for my pain which has put me in a wheelchair. I have not had a second dexa scan. Does anyone think that the Zoladex could have been a catalyst which weakened my bones allowing OA to set in? My memory is now useless, I have no libido & I am deeply depressed. I now suffer with blocked ears all the time, headaches & I am so tired. I don't dream anymore & I have no interest in life. I am now on oxicontin (after being taken off of morphine), along with pregabalin, amytriptaline, citalipram, tramadol & paracetamol. I was diagnosed with severe vit D deficiency so now take vit D for life & my liver function is borderline. I have bladder problems, constipation & symptoms of serotonin syndrome (diagnosed) I have since been diagnosed with fibromyalgia but I believe my probs are hormone based as I have excessive sweats day & night & serious weight gain despite how little I eat. Has anyone else experienced any of this? I haven't had my overies checked since I stopped Zoladex or another dexa scan. All my symptoms indicate an auto immune problem but tests are always normal but low normal. I am desperately miserable & want answers & want to know if Zoladex could have caused all of this.

  • i have been on zoladex for 12months and i am having the same problem with my libido. i just had my last shot 1 month ago and im fearful that it also wont return.

  • I have just come across this post. I was on soladex for 5 years I was having it one a every 3 weeks for endo I came off it because it no longer worked for me and the endo was growing again it was everywhere pelvis lungs , bladder, etc. My only option at the time was a total hysterectomy no hrt. I was 30 years old that was 18 years ago.

    I had no noticeable side effects except my veins are more prominent on my breasts, but now I suffer with short term memory loss, extreme fatigue and severe pain in my limbs. I have to wonder if its associated with being on soladex for so long. When I was on soladex it was only recommended for max 6 months. My gynae thought I was the only female to have been on zoladex for longer.

    I am lucky I never had lose of libedo quite the opposite. Even after hysterectomy

    I really feel for those that have had severe side effects from the drug that literally saved my life. Before the drug I couldn't get out of bed without being in severe pain and flooding everywhere.

  • I had 5 year course of zoladex 20 plus years ago, I don't know if the health problems I have today are connected with long term zoladex use they only started 8 years ago 12 years after I stopped zoladex use. But I have something between ms and fibro not in either ball park. But numbness and tingling in arms and legs nerve tendon and muscle issues, and my bone density is not as it should be used to be over high now lower than normal. My legs suddenlybstop like no message gets through. I don't know what has caused it long term zoladex use or immune system

  • Hi I was on Zoladex for a 6 month treatment period. I had Stage 4 Endometriosis. While on it, I lost weight, had a great libido, less pain. They said it would cure my Endo. It didn't. Years later I almost bled to death as my uterus had been so badly affected by the constant heavy periods that I developed adenomyosis. I was forced to have a hysterectomy. That was the best thing I ever did. I kept my ovaries and it was 8 years before I hit a 'mild' menopause.

    Unfotunately, my health has never been great especially since taking Zoladex. My local GP warned me that taking Zoladex was a concern to him (my specialist put me on it). My GP said it was a pretty heavy duty drug and could have many long term and serious side effects. I was under pressure by family to 'get well', so I felt I HAD to go on the drug and give it a go.

    Since that time, I began developing many stomach issues. Constant tummy pain. It took years to find what was going on and even then...not to any satisfaction. My liver has constant development of cysts. No biggie but they shouldn't be there and it has been suggested the toxic nature of Zoladex may have played a part.

    While trying to find why I had such severe stomach pain, I had an MRI which showed my Gall Bladder Walls were enlarged and inflammed. In the same test they accidentally found a Cyst on the tail of my pancreas. Due to the possibility that it may turn malignant, they removed it. At the time I didn't realise how serious it was. They thought I would keep my GB at that stage but it wasn't to be as pain persisted and they ended up removing my GB.

    I have continued to have regular scans on my pancreas and have a new update on this but will come to that.

    As Zoladex can cause a lot of bone issues, I have regular bone density tests as well.

    4 years ago, I was diagnosed with a PVNS Tumour in my elbow. Suspicious that this has been caused by Zoladex but no definite on that. I also have severe joint, muscle and tendon pain and have nerves impacted.

    This week, after experiencing regular pain once again in my upper quadrant, I had a series of tests, which have shown that I now have a pancreatic cyst/tumour in the side and onto the main branch of the pancreatic duct. My bile duct is also enlarged. I head back to specialist this week to see what the verdict is...if its a watch and see..or an operate.

    The thing that is VERY important here. After a lot of research into Zoladex, I found a series of lab tests that were performed on rats (closest thing to human DNA). The rats were given Zoladex and many developed pancreatic cancer. As you can imagine this is something that is more important than anything that other women know and DO NOT take Zoladex.

    For me..........I am very concerned. I will update you after my specialist appointment.

    All my best

    Keri

  • "He said they could do a blood test there and then to check my hormone levels but he didn't think it would show anything."

    I've heard this too from gynecologists. It's right up there with "get a hobby."

    I'm so sorry you're suffering. Please, please get yourself to an endocrinologist. Or more than one, if you need second opinions. I know that's a lot to ask, but it really looks like that is your way forward. A gynecologist cannot help with this, and may even be too proud to admit it.

    Your libido returns once in a while, so it is possible it can return to stay with the right help. Your endocrine system has been affected and requires a specialist. Please don't doubt yourself.

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