Advice with decapeptyl injections - Endometriosis UK

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Advice with decapeptyl injections

Cactus80 profile image
7 Replies

Hello ladies, hope everyone is well.

I'm looking for a little advice. I have had my first monthly decapeptyl injection today before my endo surgery which is no time soon. Ive to expect an increase to my endo symptoms but does anyone know when this is likely to happen and how long can it last. Ive also been given hrt patches and have no idea when to start these, maybe when flushes start? I should have asked but totally went out my head xx

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Moon_maiden profile image
Moon_maiden

Two weeks after starting Zoladex I started the HRT. I had last injection three weeks ago and ran out of HRT end of last weeks. It did say continue for 6 weeks after last. GP said it didn’t matter if I didn’t continue, just let them know if any adverse effects.

Lofty1589 profile image
Lofty1589 in reply to Moon_maiden

Was your Zoladex used before surgery? Mainly asking because not being on HRT with drugs like Zoladex can compromise your bone density

Moon_maiden profile image
Moon_maiden in reply to Lofty1589

No it was after lap when symptoms didn't ease. It can comprise the bones and is only licenced for six injections. Some consultants will prescribe after this, but you need regular bone scans.

Lofty1589 profile image
Lofty1589 in reply to Moon_maiden

I am waiting to get another appointment so I can request a bone scan. I was on Decapeptyl for 6 months and then went straight onto Prostap. I’ve got my 3rd injection in just under 2 weeks and that hasn’t been checked. My Vit D3 level has dropped right down though

Moon_maiden profile image
Moon_maiden in reply to Lofty1589

I discovered last year my vit D was low, I bought some capsules and it is increasing, taken a year though to get to more normal levels. I've heard tablets aren't always so good which is why I got capsules, but you can buy a spray. Vit D isn't strictly a vitamin. B12, magnesium and iron are other nutrients that can be deficient.

Might be worth getting a scan if you haven't had one.

Mheulgio profile image
Mheulgio

Hi there! I had my first injection 3 weeks ago. I can’t be on HRT for a blood clotting condition so I have to just deal with the side effects. First 3 days were pretty bad with hot flushes and anxiety. But that eased off by the end of the week. Endo pain was definitely worse and had an acute sensation of squeezing/cramping for the last 2 weeks with lower back pain. By week 3 that eased off and now I just feel ‘heavy’.

I’ve put in easily 5-8 pounds and the FATIGUE! It’s ridiculous! I’m having to take naps at work and am passed out by 9pm most nights. Contacted GP about it as feel unsafe even driving down days.

But I will say the actual endo pin has eased off but it’s hard to say as I do have a 3 week cycle and typically have a ‘calm’ week each month.

Next injection is Wednesday coming. I’ll be curious to see if I get the side effects in the first week again or if my body is acclimatised, so to speak.

I had instructions for the HRT to start as consultant considered putting me on and I was advised to start the day I got the injection but it was going to be a pill.

I hope you find some relief!

Cactus80 profile image
Cactus80 in reply to Mheulgio

Thank you for your reply.

I'm feeling ok but only been 2 days, got my usual pains but nothing out the ordinary as yet. I do feel a bit weird and lightheaded though. Thanks again. Hope you get on ok x

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