Worried about spontaneous bleeding while on Zoladex

[Hfm89]

I’ve been on Zoladex since October and up until this month I have been pain free! I had my last injection 2 weeks ago and a couple of days ago I started getting cramps back and a bit of spotting and now I am having really intense waves of pain and bleeding just like before. I’ve tried looking online but everywhere seems to say that bleeding should stop with Zoladex in the first month. I’m so disheartened because I thought I’d finally found something to keep the pain away! The only downsides to the injections for me have been the hot flushes but they tend to be at night so have been manageable and thinning hair but for me has been manageable for keeping the pain away- until now. Has this happened to anyone else? Is it worth speaking to my GP about - getting myself a little worried that’s somethings not right but my GP isn’t usually very helpful and I’m not due to go back to the consultant until March so any advice on your experiences would be greatly appreciated

[R_elep]

Hi. Sorry to hear that you’re going through this, but just replying to hopefully reassure you! I had exactly the same when I was on zoladex (this time last year actually 😮).

For all four months that I was on it. I got bleeding, thinning hair and hot flushes and random cramps. I was worried at first but my consultant told me that in ~10-20% or so of women, the zoladex doesn’t stop bleeding. Wishing you all the best!

[Hfm89 in reply to R_elep]

Thank you so much for replying! I guess I should be happy I had 3 months pain free and hopefully I find something else that works. What did you try next if you don’t mind me asking?

[R_elep in reply to Hfm89]

I know it’s frustrating but try focussing on the small wins I guess? I only had 4 months’ worth in the lead up to my laparoscopy surgery. And at my surgery I had the mirena coil fitted

[635703]

been on it since Aug 2021 - I experienced the same and felt exactly as you have. Had to take my painkillers. All I can say is it went over time.

Do you have HRT? To add back the hormones?

[Hfm89 in reply to 635703]

I haven’t started HRT - my consultant said to try the injections without HRT as the HRT can cause endo symptoms to increase. Generally I can manage the menopausal symptoms - the hot flushes are intense but I only seem to get them at night which I can cope with. A small bit of brain fog but I’m generally a bit ditzy anyway. I’ve also just had 6 inches cut off my very long hair to try and help me with the thinning of it. They might be more side effects than some are willing to accept but for me to be almost pain free since a couple of weeks after starting them it’s a trade off I’m ok with! Are you on HRT?

[635703 in reply to Hfm89]

yeah, tibilone. I really struggled with menopause symptoms when I had my first zolodex injection.

[Shorty9]

Hi Hfm89,

I too started zoladex in Oct due to have my 4th one today. I had small bleeds and spotting until December, that's the first month I've not had anything. I have also been amazed by how pain free I've been but like you these last couple of weeks I've started to get some pain again, but it comes and goes and never lasts long and doesn't bother me as it was a million times worse before! I also suffer from Fibromyalgia and it has easily halfed my overall every day pain, but some is creeping back in- but that could be due to other things like stress and tiredness for me.

It might be worth having a chat with them as I think we all experience these things individually, and as your seeing a change in pain levels where your uncomfortable, I'd give them a call.x

[Hfm89 in reply to Shorty9]

Thank you for taking the time to reply! I had really intense period and pain pretty much as soon as I’d had the first infection which lasted around 10 days and then up until a week ago have been completely pain free. I didn’t even think about things like stress and some extra alcohol over the festive period playing a part (alcohol is always a trigger for met endo flares!) I think you’re right and I will give my doctors a call and I think looking at it I’m not in as much pain as I was before so even if this continues it is far batter than my pain levels before starting Zoladex!

[Shorty9 in reply to Hfm89]

I think the festive period with all that extra food and drink along with the build up and then being around more people than usual etc can be triggers for some people. It is for me. It could also be your body adjusting, as I say I had bleeds and spotting until last month which is the first time it didn't happen. I had some pain each month but it was that mild I didn't even take pain relief! So when it does come and go it's totally tolerable and not for long periods of time for me.

I just think if your worried or have questions, it's always best to speak to your gp or gynaecologist. That's what I've done today about a few things and I feel so much better for it. Good luck and I hope the pain remains low for you!