Zoladex?: Hi I'm new on here, bit of... - Endometriosis UK

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Zoladex?

as1981 profile image
8 Replies

Hi I'm new on here, bit of background...

I'm 31, had my first lap in 2000 and another last summer, been suffering for years. I recently moved to a new area so went to GP to see if a new person would help! I had a son 8 years ago and bled for 10 months afterwards with no help!! I have mirena coil (2 yrs) and take Norethisterone daily, been bleeding continuously & in pretty much constant pain. Saw new consultant yesterday who was great (finally!). She agreed this can't go on. She has booked me in for a Zoladex injection next week, and to take Tranexamic Acid, as I have tried every other route. I'm a bit dubious about actually having the injection but willing to give anything a try! Who else has had this? And how have you found it? Any comments, good or bad would be really appreciated...

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as1981
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Chrissie66 profile image
Chrissie66

Hi as1981 :)

I think most people on here have had Zoladex at some time or another, it's the 'go to' drug for endo.

Basically, it puts you into a false menopausal state, so it switches off your periods and all that they entail. If it works, and most of the time it does, you'll have relief from the pain and the bleeding will stop, or at least dry up to a slow drip!

The bad news is that like every other drug, it comes with side effects, and I won't lie to you, they're not pleasant. But everybody is different and what might floor one person is a breeze for somebody else, so you really need to try it for yourself and see what happens. You also need to give it at least 2 months to evaluate it properly; the unfortunate thing about it is that the side effects come on pretty much immediately but it can take a bit longer to do its job, so for a little while you have the worst of both worlds - but if you go into it forewarned, it's easier to deal with mentally.

The most common side effects are those related with the menopause - hot flushes at any time but especially at night, mood swings, headaches and feeling sick - but they can give you synthetic add back HRT to help with all of that if it proves to be too much.

Over the 20 years I've had endo, I've 'used' it to give myself some pain free windows and it's been brilliant. I've just come off a six month course which was given to me because a cyst suddenly popped up from nowhere on my ovary in October, and surgery is not a option for me; 6 months later the follow up scan showed that the cyst had completely disappeared. The stuff works. It often feels like you're putting poison into yourself! but it works.

As for the injection itself - that very much depends on your tolerance for injections generally, I think - I personally have mine done by the practice nurse at my GP surgery and it takes 30 seconds. And that's including me climbing on and off of the bed. It smarts a bit, and it may bruise a bit, but there are far worse things in life!

Give it a go. As I said, you need to give it at least 2 months, but if you really think you cannot cope with the side effects, they'll just stop giving you the injections. Also, there is a very similar drug called Prostap which is supposed to be identical in every way apart from the name, but it's not; some ladies who can't tolerate Zoladex do well on Prostap and vice-versa. I actually started the first two months of this latest course on Prostap and changed over to Zoladex for the last four months. There are ways around everything. :)

Good luck!

C xxx

hillidoos profile image
hillidoos

hi, i started zoladex four months ago and for the first two weeks it made my endo pain so bad i ended up on morphine but then it just stopped completely, i am still pain free!!! i started the hrt liviel at the same time as the night sweats are really bad but this took about four weeks to start working, now though i get slight flushes but no night sweats and no other side effects to speak of i would stay on both for ever if i could lol. As for the actual implant it nips for a couple of seconds then nothing so don't stress over that it is def worth a try so good luck.

lippylouise profile image
lippylouise

Hi

I was on the Zolodex injection for six month and had to take Tibolone-HRT with it. The hot flushes and mood swings weren't great but i had no period and it was great. But and this is a big but, 3mon exactly after my Endo all grew back, cysts and and endometrium and now im in and out of hospital like a yoyo. The thing is we are all different though, and although it didnt work for me it may work for you. I have now come to the conclusion that you, can stem Endo but not stop it.

Emma

uglyduckling profile image
uglyduckling

I have been on Zoladex for the past three months due my fourth short soon, there are a lot of nasty side effects but for me it has made me finally stop bleeding, I am still in agony everyday but you have to live with it as I have been told so many times but my doctor, I am seeing the most senior doctor tonight for a double appointment finally I might get something good from them I will keep every one up to date after this appointment.

If any one ever needs to talk I am here for you.

Kind Regards

Emma-Jane

as1981 profile image
as1981

Thank you ladies,

I'm booked in for a week on Monday so will let you know how it suits me.

It's so nice to have found this site and realise just how many people are in the same boat, and to get this advice & support!

Thanks again,

Angela

Imarevel profile image
Imarevel

Hey I've been on zoladex for 9 months on with HRT. I bled quite a lot at first but after first few weeks stopped bleeding at all.

It has helped my pain and I've stopped taking nearly all my pain killers. My only issue was that for the first 3 months I was on monthly injections which was great. But then they moved me into 3 monthly injections and I felt it ran out around the 8-10 week mark. I have since seen my consultant and he says this is quite common and has since put me back in monthly.

It's only licensed for 6 months usage but with HRT. And regular bone density scans it seems to be safe for longer if working.

I feel more like me again than I've felt in years!!!! Only thing it doesn't help is my extreme tiredness. But guess I can't have everything!!!

They main side effect I suffered from us weight gain, I put on 2 stone in a month. But I'm happily going to stay on it for the foreseeable future as its the only thing that has given me any relief.

Hope this helped :)

Also if your looking for anymore support try the Ednometriosis UK website or phone service and they can give you some info on zoladex.

cwillow profile image
cwillow

Hi Just wonderinmg how you goton woth the zoladex? I hope ur doing well on it. I had a lap 3 weeks ago and patches of endo removed then was given zoladex injection 10 days ago but no relief in pain as yet,. i was just wondering if this has been your experience or have you felt relief yet? Thanks Caroline

yorkshiredancer profile image
yorkshiredancer

Hi, in 2 weeks time i will have my 6th and last one ever of prostrap. i started on zoladex but the it was changed to prostrap after the 3rd implant to help nhs cut backs!

Still not sure what i think of this form of treatment, my endo pain was compareable to child birth but only for 2 days in the month. With occasional pains which were not too bad arround ovalation.

While on this treatment i feel like every day is a struggle joint and bone pain is the worse, probably made much worse with my 29lb weight gain which i put down to being down in the dumps. I seem to not need to sleep at night as i just cant to sleep, so spend hours reading or tossing and turning yet i am always feeling tired!

on the whole i'm a moaning, moody very old feeling 43year old.

On the plus side i can soon look forward to finding out if the endo has shrunk enough for them to remove without causing damage to my kidney, ureta, bladder and bowel. Good Luck Everyone xxx

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