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Original poster

Can I refuse zoladex before hysterectomy?

32 replies

GCAcademic · 12/01/2023 23:21

Consultant wants me to go have zoladex for three months before hysterectomy to shrink fibroids so they can attempt the surgery laparoscopically rather than abdominally. It sounds awful and I’m worried about the side effects and how I’m going to manage at work (busy, high-pressured role, long hours, etc, that I need to be on the ball for). Frankly, I’d rather take my chances with having the surgery done abdominally. Am I allowed to refuse?

OP posts:
Original poster
GCAcademic · 12/01/2023 23:22

Sorry about typos. It would be three injections, 28 days apart.

OP posts:
Valhalla17 · 12/01/2023 23:26

I would go with it OP. I had 1 injection and that actually lasted a few months. I didn't need any others and it did help with shrinking before surgery. Are you having heavy periods as well?

The side effects scared me too...after I had the injection in hospital I read about it and was worried...but it was fine. I had some night sweats but otherwise OK. It did the job.

Perhaps agree to one and then see how it goes?

In the end my surgery began laparoscopic but had to be done abdominally, but either way it shrunk the fibroids a bit which I'm sure made it somewhat easier to remove.

mowly77 · 12/01/2023 23:28

I’m sure someone more knowledgeable than me about this particular treatment and procedure will be along soon, but I have major ill-health (cancer) & you are free to refuse any treatment you like. It’s your choice entirely and your body.

But I would also suggest trying to talk to some people with first-hand experience of the treatment if possible, or getting a second opinion, as it may not be as bad you think.

Reading about the side-effects of any drug or treatment make them all sound hideous. But everyone reacts differently.

ConfusedGin · 12/01/2023 23:30

How large are the fibroids? I would assume not all that large if the doctor thinks that they can be shrunk to make laproscopic surgery an option. (I ask as I haven't been told that it may be possible for me after my treatment - I'm still expecting open myomectomy)

But I have had Zoladex to try and shrink mine before surgery and the worst part for me has been the night sweats, which yes makes sleep a bit more broken but I've functioned at my full on role. Probably no worse than the effects of the anaemia the fibroids caused to start with. Hot flushes for me tend to be contained to the evenings when I'm home and can sit about in shorts and vest.

I had one larger, slow release injection rather than the three but no scans since to check they have shrunk.

Original poster
GCAcademic · 13/01/2023 19:55

Thanks so much for the replies.

The scan was over three years ago, so I expect the fibroids have got worse (the bleeding certainly had, though I’m now on the mini-pill which has made the bleeding a lot lighter) but the largest was 12cm and there were a lot of them, at least enough to rule out some other procedures. It’s reassuring to hear that the effects were no worse than anaemia.

I’m also needle phobic and just about managed to get myself jabbed for Covid, but I hear this is a big needle in the stomach, which is on another level . . .

OP posts:
ConfusedGin · 13/01/2023 21:07

I am also not a massive fan of needles but can get through vaccines, blood tests if I just distract myself and pretend that they aren't there. It wasn't that bad.

On the side effects vs anaemia. Yes I had another broken night of sleep last night, but I also managed to miss a dose of iron for the last 2 days and honestly the woozy / slightly tipsy / moving but not spinning feeling I've had from that is worse. And yes, I've taken all my iron tablets today.

I bought a little portable fan that I take to the office and have by the bed for the night sweats. I can normally cool off in 5-10 mins

user1471462656 · 13/01/2023 21:44

I had 9 months of Zoladex after laparoscopy for endometriosis. The needle is larger than I expected but the nurse always used a numbing spray on my stomach first and it’s over so fast.
I was given the option of switching from the monthly injection to one that lasts 3 months so could you ask about that?

Also my consultant prescribed HRT to take with it and I had no noticeable side effects.

TwigTheWonderKid · 13/01/2023 22:29

I've been on Zoladex for the past 9 months to shrink a breast cancer tumour. I'm also on Tamoxifen and I've had zero side effects from either drug. The injection is over in seconds and really doesn't hurt.

LulaK · 16/01/2023 13:31

You absolutely can refuse. Your body, your choice. But I had them and wasn’t nearly as menopausal as I was expecting, just a bit hot now and then. And I’ve had an open hysterectomy and it’s a big op, laparoscopic has a much better recovery time. I think it might be worth it.
I lay down for the jabs and didn’t look. Certainly no more sting-y than a vaccine or blood test. It is a bigger needle, but it’s going into belly fat not a vein. It’s not too bad at all and very quick.

ConfusedGin · 16/01/2023 16:41

I'm having another (unplanned and final) injection tomorrow, if you would like an update from a wuss on how it goes. At the moment, I'm choosing to look at the hot flushes as saving on heating.

On a more serious note, most of my colleagues hadn't even realised I'd been anaemic for so long, or having the injections. It's likely yours will be as wrapped up in their own day to day to notice. If it's forgetfulness you're worried about, a notepad and pen can help but I'd focus on making the surgery and recovery as easy as possible

Original poster
GCAcademic · 16/01/2023 17:25

Thanks for the replies! Yes, I'm freezing at the moment, and feeling that some hot flushes may not be altogether unwelcome! I'm just a bit worried as a lot of my job involves being "on": teaching, lecturing, chairing meetings, but it sounds like not everyone has particularly bad side effects.

Will definitely have to lie down for the jab. And not look.

OP posts:
Chihuahuasrule · 16/01/2023 17:30

Of course you can refuse.....but open surgery on larger fibroids carries more risks , with chance of longer Hospital stay , blood transhuson etc which will mean more needles.

You could have the first injection. And see how you get on?

LulaK · 16/01/2023 17:40

Yes that’s a good idea as @Chihuahuasrule says. They come in a one month or three month dose so you could try one month and see.

ButtonMoonMrsSpoon · 16/01/2023 19:03

I've been put on zoladex for the same reason. Had 4 now.
I refer to it as being microchipped 🤣
It's been brilliant for me, a few bouts of hot flushes but it's stopped my bleeding and it's so nice in that respect.
It doesn't really hurt as such, I find it more like a pinch but then it's done.
I've been given hrt from this month but I'm more wary of taking that and want to find out a bit more about it first but the zoladex for me is a blessing.

Original poster
GCAcademic · 16/01/2023 19:35

I refer to it as being microchipped

Nooooo! My poor dog screamed the place down when he was microchipped.

But, anyway, coming around to trying one month . . .

OP posts:
BergamotandLime · 16/01/2023 19:40

Of course you can refuse but after having them for a year pre-surgery for removal of a huge fibroid, I would highly recommend them. I actually got Decapeptyl which you get in your bottom (nowhere near as bad as it sounds!). The flushing got to me after a while but I was then given add back tibolone which made a massive difference. It completely stopped the bleeding and my iron levels came back to normal pre-op and it made it much easier to remove. I had a myomectomy though.

Quattro · 16/01/2023 19:51

I had an open abdominal hysterectomy last year for a massive fibroid. I had to have daily blood thinning injections into my stomach (self administered) for two weeks after surgery. I think this is standard to prevent clots. Just in case that’s a factor for you to consider.

QueefQueen80s · 16/01/2023 20:06

I refused. Had abdominal and recovered in 3 weeks (no pain at all etc)
I'd read they can mean your ovaries won't last as long, and some people saying the menopausal damage done in those months isn't worth it.

But not trying to scare you, I'm sure most women are fine. I decided on c sections for my babies as refused to be just a statistic pressurised to go natural to save money but I could end up with longterm birth injuries. And it was same with this.. felt like I was being pressured just to make surgery easier and cheaper for them, not caring what would happen to me longterm.

Original poster
GCAcademic · 16/01/2023 20:17

Quattro · 16/01/2023 19:51

I had an open abdominal hysterectomy last year for a massive fibroid. I had to have daily blood thinning injections into my stomach (self administered) for two weeks after surgery. I think this is standard to prevent clots. Just in case that’s a factor for you to consider.

Yikes! Was that because it was an abdominal hysterectomy or is that standard whatever type of hysterectomy you have?

I can’t imagine what would be worse. Having to inject myself or having my clumsy husband do it . . .

OP posts:
Quattro · 16/01/2023 20:25

I think it’s because the recovery is longer with abdominal surgery, so you’re less mobile and more susceptible to clots.

I didn’t mean to alarm you, I was just thinking that the zoladex might be worth if you got to avoid the blood thinners. As you said you are needle phobic.

If you do end up with them though, the blood thinners are not that bad, honestly. It can sting a bit but I developed a technique which minimised the stinging.

Original poster
GCAcademic · 16/01/2023 20:29

Quattro · 16/01/2023 20:25

I think it’s because the recovery is longer with abdominal surgery, so you’re less mobile and more susceptible to clots.

I didn’t mean to alarm you, I was just thinking that the zoladex might be worth if you got to avoid the blood thinners. As you said you are needle phobic.

If you do end up with them though, the blood thinners are not that bad, honestly. It can sting a bit but I developed a technique which minimised the stinging.

Thank you, that makes a lot of sense. I hadn’t thought about blood thinning injections. Shudder!

OP posts:
LulaK · 16/01/2023 22:08

@QueefQueen80s makes a good point. I got rid of my ovaries at surgery anyway so protecting them wasn’t a factor f

LulaK · 16/01/2023 22:09

(clumsy fingers)

..for me but I’m older. Worth thinking about.

Original poster
GCAcademic · 16/01/2023 22:21

I'd like my ovaries out (I've sadly known too many women who have had ovarian cancer and died from it) but my consultant is opposed to it as I'm "only" 48. Personally, I think this is close enough to menopause. And if the zoladex is going to exacerbate the symptoms / effects of menopause, then I'm not sure why keeping the ovaries is such an issue.

OP posts:
QueefQueen80s · 16/01/2023 23:18

GCAcademic · 16/01/2023 22:21

I'd like my ovaries out (I've sadly known too many women who have had ovarian cancer and died from it) but my consultant is opposed to it as I'm "only" 48. Personally, I think this is close enough to menopause. And if the zoladex is going to exacerbate the symptoms / effects of menopause, then I'm not sure why keeping the ovaries is such an issue.

Ahh okay if you're having them out anyway/going into menopause then not an issue.