Delayed Decapeptyl or GnRHa injections - Endometriosis UK

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Delayed Decapeptyl or GnRHa injections

atealdeer profile image
8 Replies

Hello,

I have Decapeptyl every 28 days. Due to cancellations this week with the strikes, I'm going to be having my injection 8 days late. The first gynaecologist who injected me told me to avoid going more than 3 days late with it because I might suffer symptoms. I think she meant with it wearing off and then my body trying to shut down again, I don't know. I don't expect I'll bleed or anything as it seems to take ages for cycles to return from what I've read. I always think I feel different the last few days before my injection, as if it's wearing off, but I don't know if that's real. I'm just a bit worried. Has anyone had these gaps before and can tell me what to expect? I'm hoping it'll be fine as I have a busy month ahead. Thank you for reading!

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atealdeer profile image
atealdeer
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8 Replies
Emmy31 profile image
Emmy31

I had a couple of weeks gap due to finishing my initial 6 months and seeing my gynaecologist. I did start having increased pain again but other than that I was ok. The pain wasn’t as bad as pre injections. I then went onto 3 monthly injections. I am just at the end of my first 3 months. I don’t think these suit me as well as the monthly ones. But my gynaecologist did say that some women suit one more than another. So I am looking to go back to the monthly ones again. X

atealdeer profile image
atealdeer in reply toEmmy31

Thank you so much for replying. I was mainly worried about pain, hot flushes and mood, and now I won't worry so much.

Did you try the 3 monthly one for convenience? A private gynae mentioned it to me as an option for convenience once you know it works for you, but the NHS who are actually treating me haven't mentioned it and I'm pretty sure I mentioned it and they dismissed it. I did wonder if it you get slightly different reactions to it, sorry you feel it doesn't suit you and I hope your doctor is happy for you to switch back. I used to get my jabs done at my GP which was really helpful, but the hospital keep insisting they do it since my yearly review and op, so pushing for the 3 monthly had been on my mind, but I don't want to mess up a largely good thing!

Emmy31 profile image
Emmy31 in reply toatealdeer

yes I did. It was through the NHS. She said to try them whilst I wait for my laparoscopy as this will be a good year.

I’ve only had the one but so far I’ve had palpitations (GP investigating), and increased pain over the last few weeks as I come to the end of the 3 months. I didn’t have any of this with the monthly ones. Everyone is different so my gynaecologist just said to stick with which suits me best. She said theoretically if you’re ok on monthly you should be fine with 3 monthly however a handful of women find increased side effects with 3 monthly. You could be absolutely fine. It’s definitely worth asking about if you are on them long term.

I’ve got my next injection next week so will ask if I can go back on monthly. I’ve got my next gynae appointment in June/July time. She did want me to come off them before my laparoscopy but I didn’t want to go a year waiting without them so I may need to come off them soon anyway as my op hopefully gets nearer.

Good luck with it all. Xx

atealdeer profile image
atealdeer in reply toEmmy31

Hi, sorry, I accidentally replied to my own post rather than to yours!It's down there v 🙃

atealdeer profile image
atealdeer

I think I will either push to get them at my GP, who are perfectly willing to give them, or maybe ask for 3 monthly.

Is the gynae suggesting coming off it so they will get a clearer picture of things during the lap? I was on the injections for a year before my diagnostic lap. As much as living a much less painful life was amazing, I understand that the injections can cover things up and they only found a single patch when they'd expected mine to be quite widespread, and I was told that more could have been hidden because of the Decapeptyl. But I totally understand not wanting/not feeling able to come off it! I'm now really scared to come off it, even though it has affected my blood sugars (I'm already a diabetic) and so I'm taking even more medication!

I really hope your wait for your lap isn't as long as you think. My work set up made me a good candidate for the cancellation list. Maybe you could push for that, if only a little bit of notice would work okay for you?

Emmy31 profile image
Emmy31 in reply toatealdeer

yes she said she would prefer me off them pre lap as they can give a false negative. I really didn’t want to go back to how I was before so we agreed the current plan.

Aww thank you I hadn’t thought about cancellations. I’ll ask when I see her next.

Xx

atealdeer profile image
atealdeer in reply toEmmy31

I don't think I could have done without the injections in the lead up to my lap. When I was waiting for the results of my DEXA scan I was so worried that I'd not be allowed to continue, but my bones are fine. Fingers crossed for the cancellation list! ❤️

Emmy31 profile image
Emmy31 in reply toatealdeer

thank you. Fingers crossed all continues well with you x

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