Looking for feedback on Zoladex

[NikNaxx]

Hi all, hoping for as much feedback here as I can get from anyone who's tried Zoladex injectons.

For a brief background I am currently 28 and had a laparoscopy in October 2019 to diagnose and remove endometriosis.

I found out that I should have seen a specialist after this but due to covid, never received said referral. I just had my first appointment with the specialist however, explained that the pain has returned worse than before including pain when trying to use the bathroom (Endo having been found around the bowels and surrounding organs so this makes sense) and they do not wish to do further surgeries, but instead are heavily pushing for me to try Zoladex.

I requested an info leaflet and looked up reviews of the drug online- and honestly am not sure if this is something I should agree to....

A lot of the reviews are mentioning brutal side effects from pain to mood swings and infertility due to their periods not returning after stopping the medication. Most of the reviews praising the drug state that it is the stopping of the periods that helps with their pain but I am constantly in crippling pain whether I'm bleeding or not. I'm worried that this drug won't help me but will just add more long term or even lasting side effects on top of my existing pains and struggles.

I've also heard of massive mood swings and mental health changes on Zoladex and am already worried about that as I've been diagnosed with anxiety and depression for many years now that was never treatable.

Am I overreacting? is this drug worth the seemingly huge risks? If anyone is willing to share their experiences to help me make my decision before I have to have the first injection I would be really grateful- I don't want to live like this anymore but I'm worried I'll just be jumping from one hell to another or worst case scenario? doubling up on the negatives with no positives. Any advice appreciated, take care all!

[TogetherWeAreStrong Moderator]

NikNaxx thanks for being so frank!

[NikNaxx in reply to TogetherWeAreStrong]

Thank you for taking the time to moderate these forums and give everyone a space to get help and advice from people going through the same issues x

[635703]

I have been on it since Aug 2001. The first month was difficult and then the gave me HRT Tibilone to add back the missing hormones and I felt much better.

Remember, if you have bad side effects. You call Consultants Secretary to get an appointment or for advice from Dr.

Everyone’s side effects are so personal. I have anxiety and depression and it’s not affected me in that regard or with mood swings.

It’s helped heavy bleeding stop and given me relief from pain. The side effects aren’t always what happens to you and the only way you can know is to try it.

[NikNaxx in reply to 635703]

Thank you, it's a daunting prospect at first when you only see the negatives! Yours and all these replies have helped ease my nerves a lot though and as you said, all I can do is trial it and see, and hope for the best it seems

[girli1111]

zoladex was a positive for me. I was prescribed zoladex along with Livial (bit like hrt was my understanding). In my case I had a large endometrioma and the idea was to try and reduce its size before surgery. Pain was under control while I was on zoladex, and I didn’t experience negative side effects. I’m much older than you, amd was in my 40s at that time. Good luck with your informed decision making. I would like to know why they are not considering more surgery. Good specialist excision surgery took my pain away.

[NikNaxx in reply to girli1111]

I wish I knew honestly, I know there's a limit to how many surgeries they can do but I've only ever had the one diagnostic lap and at the time it was such a relief. I'd even had pain in my left leg making me unable to walk without a painful limp- all gone as soon as I woke from surgery and it's something I now know is a common side effect of endo which is crazy to think about.

Maybe I'm just getting greedy for that relief again but I'd have thought more than one surgery would have been viable. I'm already sick of the comments and judgement for not being in work right now due to the pain.

Thank you for taking the time to reply though, it's reassuring to hear more stories like your own where the drug has helped and not just given some horrific experiences.

[Nataliex]

Hi, I've been on zoladex for 2 1/2 years now and the symptoms have settled, except hot flushes and some joint pain. The first few months were not great as I had mood swings and what I can only describe as rage outbursts. That settled within a few months though. I'm taking zoladex for endometriosis and breast cancer so can't have HRT, which may well help you with any of these symptoms if you get them. It's completely removed my endo symptoms but my symptoms were mainly around my periods which have completely stopped on zoladex. If you decide to try it I'd recommend giving it a few months to settle down before assessing if it's right for you.

Good luck!

N

[NikNaxx in reply to Nataliex]

Thank you so much for taking the time to reply and being so open about your own struggles. Zoladex definitely is seeming like something that needs to be trialled first as it affects everyone so differently but these comments are helping me feel less scared of at least trying it out.

Thank you again and please take care of yourself, wishing you all the best in your treatments!~

[Awwy]

Hi.

I was on prostrap before I went to zoladex. Prostrap for me never worked and pain returned within about 4 weeks. I changed to a better specialist last year and they offered me zoladex.

Personally I have not experienced any mood swings on it. I was offered add back therapy of Tibilone. I do get hot flushes. My memory isn't great. The dire pain I was in though did subside. For me it's made my life better. I had to switch from 12 weekly injections to 10 weekly though. Again my symptoms returned as it wears off.

In addition to this I added in osteocare (private) as being on GNRH can affect your bones. I have insisted on a DEXA scan which I should have got at 12 months but got at 18 months and it showed everything was ok.

I have depression too and take antidepressants. It hasn't made it worse.

1. Everyone's body is unique to them do really have a think about what works best for you. If you are concerned about the affect on mental health get some check ins in place.

2. I would follow up on what the reasons are not doing any further surgery and seek a second opinion from someone who is more experienced in endometriosis.

I wish you all the best hun. Its a never ending battle. Take care of yourself.

[NikNaxx in reply to Awwy]

Your advice has definitely been a help, thank you! Honestly I'm realising that I might need to push a little harder or see a different specialist entirely from these comments.

I went unseen for 3 years when I should have been, only to have to endure a 6 hour round trip to the hospital with a specialist- and was in her office less than 3 minutes. I felt so pressured and disregarded and was asked close to nothing about my symptoms or problems since surgery.

Not easy when the prospect of speaking to strangers can bring me to tears with the anxiety! but I feel like I need to know more about what happened in that first surgery and more than a dismissive 3 minute appointment that could have been a phonecall and being forced into some treatment I have no knowledge of.

[Awwy in reply to NikNaxx]

Honestly know how you feel. Its like they gaslight you. You know how you feel. Demand the right treatment. I am in the middle of writing my letter of treatment that I have received which is very poor. Its taken them 2 years to do a laparoscopy and every organ and ligament including ureters are involved. There isn't an organ that is spare. Good luck. Let me know how you get on if you can. X

[NikNaxx in reply to Awwy]

I definitely will keep you up to date when I can, but sadly as you mentioned yourself its such a long process. I was on the verge of tears in the doctors office in pain after such a long trip and I found out the injections won't even be started now till April and I just have to suffer until then, enough to drive you insane I swear!

[Awwy in reply to NikNaxx]

Hi NikNaxx. Why can't they start until April? Was that your GP or consultant? What support have you got in meantime to help you manage.

Originally I was having my injections with a specialist nurse at the hospital but it was a long way to go for a jab. I asked them to write to my GP and now have a lovely nurse there who does it. It took a while to sort out.

I know its upsetting, you GOT this. You are a warrior. Reach out if you want to chat. ❤

[My_adventures]

Hi I only went on zoladex while I waited for surgery, was supposed to be only 6 month's, surgery took a year but I only took for 6 months, I refused any longer.

I didn't have the horrendous side effects others had, just didn't feel myself, insomnia, headaches and being tired were my worst symptoms - I know others are much worse. I just didn't agree with it for my body.

I know others take it for years, but personally I felt because it should only be used for 6 months... That's all I would take it for.

Its a hard decision to make isn't it, I felt like you when I knew I had to take it for longer. The support and advice isn't out there is it - or I found it wasn't at least.

Do what feels right for you is my best advice - not great I know!

Take care xx

[NikNaxx in reply to My_adventures]

Thank you, and its definitely better advice than I had from the specialist! Part of my anxiety over all this has been how dismissive the hospital has been and that I had to find the name of these injections and information about them from my GP instead!

It seems all I can do is trial it as you said and hope for the best! Some of the side effects like weakened bones and infertility are so daunting but these replies have helped me think less in negatives and worst case scenarios.

Thank you again for taking the time to reply and wishing you all the best for your personal treatments~

[My_adventures in reply to NikNaxx]

If you ever want to private message me feel free, I 100% understand what you are saying.

Have they offered you HRT with it as well?

[Goiaba]

I’m 29, on my second month of Zoladex/Prostap and never felt better. However it is being used as a temporary measure while I’m waiting for my hysterectomy. My doctor suggested it as a way of slowing my endo and adeno down as they are very aggressive and progress super fast. I first had a one month injection to see how I’d feel and now on the 3 month one. My doctor expects me to have at least 6 months on it and hopefully the surgery will happen then. I have had very little side effects because started Tibolone 10 days after the first injection. Symptoms I have start the week after I take the injection, mainly mood swings - I get very very annoyed and angry. It passed after two weeks or so. I have occasional night sweats and I feel like my reflux gets a lot worse if I take the tablet without eating anything in the morning. I haven’t stopped bleeding yet and my doctor says it’s because of my adeno, it’s a constant feeling of being on the last days of my period. De says it will happen eventually. I also feel like my bowel symptoms got considerably worse as I used to go to the loo more often whilst on my period. I have absolutely no pain apart from local cramps as I have a large cyst pressuring my right kidney. I am also on amitriptyline, which helps with the pain and mood too. Fertility is not a concern for me as I do not want to conceive, so I can’t comment on that. Overall I feel like this was the best treatment anyone has ever offered me. It’s not perfect, but I have little to no pain and I’m happy with that. I hope this helps you make a decision xxx

[NikNaxx in reply to Goiaba]

Thank you! I'm really glad it has been working out for you and thanks so much for taking the time to leave some feedback, some of the reviews were so daunting but hearing personal stories like your own have definitely been reassuring for me, thank you Wishing you all the best for your further treatments and surgeries! it's such a battle to deal with

[AmyPeeps]

I’ve just come out of a&e due to an horrendous reaction due to the abrupt stopping of my ovaries and the anxiety it caused led to a very horrific panic attack after a week full of anxiety as it was kicking in. I then had what they called an adrenaline attack and I honestly felt like I was having a panic attack. It starts coming out of my system Tuesday and Tuesday can’t come soon enough. Horrific. I wouldn’t recommend to anyone. I didn’t take the hrt. If I had I may have had a different reaction but who knows. I had one injection and nit having another. There are so many mixed reviews but I’d imagine if you have anxiety and depression anyway it’s not going to help in the least having tour hormones abruptly turned off xxx

[NikNaxx in reply to AmyPeeps]

Oh gosh that sounds horrific! I'm so sorry you had to deal with that. Thank you very much for being open about your experience with it though, I'd rather know things like this in advance instead of being told its all fine!

Hoping you feel better Tuesday and wishing you all the best!

[bunmum2]

I had an endometriosis flare up twelve years ago, it was acutely painful and I had to go to A&E. After approx. three days fasting, on a paracetamol drip in hospital, to help calm my symptoms, I had bowel probs. I had my first Zoladex implant injected in my abdomen. It bled but stopped after applying pressure. I didnt have HRT offered as my doctor was concerned I may have cancer. I had to wait about three months for the laparoscopy that would treat my endo. in the pouch of douglas with diathermy. I had one other zoladex injection, again it bled and shocked my GP who did the injection, it stopped with applied pressure. The zoladex did its job and more, I was told it stops messages from the pituatury gland, well it seemed to stop my entire brain from working. That wasnt so bad as I had been going through some extreme anxiety and upset at that time, and i was in a way grateful for the blank mind that it gave me, I couldnt even read a book! I remember just sitting in front of the TV all day not even knowing what I was watching, and my step Mum suggesting i read some books to keep my mind active Lol! She had no idea what she was saying. But it totally calmed the endo. down, I had been having pain all the time as well as very heavy painful periods, the injection stopped my periods too. Having had the two injections, I couldn't face the drama of the bleeding injection and the blank feeling any more so I tracked down a medical herbalist who was brilliant and put me on Vitex agnus castus as well a mix of other herbs i can't remember. But this worked for me, for approx three years. My periods never properly returned, i think I had a couple but they were much less of a problem. I am very sensitive to drugs/foods etc due to having M.E. I believe, if you aren't as sensitive to drugs, Zoladex may well help you, it certainly does what its supposed to do, and if it gets too much, you may find that only a couple of treatments are needed anyway. Good luck with it, I hope it helps.

[NikNaxx in reply to bunmum2]

Thank you so much for the reply! Sorry to hear you had so man issues with the injections but glad you found something that worked for you~

Honestly I've never had a diagnosis for any sensitivity- i don't even know if that's a thing? But in recent years I feel very sensitive to any changes in my body, from being able to predict my periods to having strong reactions to painkillers which make me sleepy and the anaesthetic used when I had laparoscopy (that scared me, I took so long to come around! usually i was the type to wake up before even back to my bed) I was telling the docs for years before my diagnosis something wasnt right before I finally got my diagnosis.

Hoping I don't have such severe reactions as you mentioned but at least I know better now what to look out for, thank you again and wishing you all the best!