How long have u been on decapeptyl?? - Endometriosis UK

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How long have u been on decapeptyl??

Pureunicorn
Pureunicorn

Hi, I was just wondering how long some ladies have been on decapeptyl? And if anyone knows how long it's safe to be on it? I feel like I'm being fobbed off by my consultant, I know that covid19 is stopping everything but does that mean it is safe to keep going on this as I wait for surgery 🤔

Any advice would be great

Thanku xx

13 Replies
oldestnewest

Hey, i was on it for around 7 months whilst waiting on my surgery.I also took tibolone alongside it.

The first month i had a massive flare,but this is quite normal so have some decent pain killers on hand.

If you can get through that it’s worth it! I had no pain for 6 months.

The flushes were quite bad but i was terrible at remembering to take the tibolone. Its probably worth a shot, its just temporary and everything goes back to normal within a couple of months once you stop taking it.

The break from pain gave me a chance to get my strength back.

Its a big decision so take your time and do lots of research x

Pureunicorn
Pureunicorn in reply to Sadie205

Hi, thanku for ur reply, I've been on it for 8 months and I've had the HRT from 4 months (hot flushes were a killer!!) I'm just waiting for a hysterectomy but I dont know how long that will be now 😒 its definitely helped with my pains xx

Hi! As long as you are on HRT too then you are fine to stay on it for as long as you need to. If you don’t have HRT then it’s six months max but with HRT you can do longer x

Pureunicorn
Pureunicorn in reply to b_bart88

Hi, thanks for ur reply, yes I'm on HRT, I started it at 4 months in! I know I've got to have a bone density test after 1 year so I think that will happen before surgery now 😒 x

b_bart88
b_bart88 in reply to Pureunicorn

Yes same with me, but my consultant doesn’t want me to have a hysterectomy until my son is old enough to get into bed himself, shower etc so we are looking at 3/4 years. Hopefully the injections carry on working and I can wait that long.

I really hope it works for you, I find the patch works a lot better for HRT than the tablets too x

Pureunicorn
Pureunicorn in reply to b_bart88

I'm lucky that my children are old enough to do things and help out and my husband is great too, just a bit worried when I do have it done about getting them to school but probably by the time I have it my son would have passed his driving test 😂 xx

I’m in the same boat as you! I’ve been on it for 6 months now and am on a waiting list for a hysterectomy. Consultant has just moved me onto 3 monthly injections as she’s stated clearly I could be looking at 2022 for my OP! 😣 I started on the HRT patches 4 months in as the headaches and hot flushes were so unpleasant. I’m happier now with the combo of patches and injections. Pain has turned way down in volume! I feel there’s ‘something’ but it’s not pain. I worry about long term use as well but as the consultant says it’s the best choice to be pain free but it’s my choice-I can come off it for a few months if I’m worried and restart it. But I think I’ll stay on it as long as I’m feeling ok. Good luck!

b_bart88
b_bart88 in reply to Mheulgio

I know what you mean about it feeling like there’s something but it’s not pain! Sometimes I feel like a heaviness you’d get before a period, it’s strange! But like you, the patches help so much. I now have a coil plus oestrogen only HRT patch and it’s a brilliant combo 🙌 I hope it carries on for you too!

Mheulgio
Mheulgio in reply to b_bart88

🤗

Pureunicorn
Pureunicorn in reply to Mheulgio

Thanku, I know what u mean too about a heavy feeling or feels like something is swelling up inside (mainly right side) sometimes I cant even touch it cos its tender/painful, I just want a good night sleep without pain or discomfort, I dont think that's alot to ask 😴😕 xx

I’m unsure and worried about exactly the same. March will be 12 months of having it. They told me it’s exactly the same as have Hysterectomy, with Tibolone as add back. Headaches are side effect. I am estimated March for surgery. Due to COVID who knows when it will be, I ache now. If I come off it I would struggle to work / look after my children. But also look at the long term side effects.

It's so crap! When I last saw my specialist she said that if I'm on it longer then 1 year I need a bone density test but she said u should have a date and surgery before that!!! Not looking that way now 😫 I can feel it's not working as well as it was, I've got a phone consultation with my gp tomorrow about pains on my right side and ribs, it's really affecting my sleep and now my life in the daytime, they sent me for a ultrasound so we will talk about the results and where we go next, I just feel like I'm being past from one person to another! Xx

I’m going to ask about a bone density test as I ache more particularly my feet and in my toes.The month before I bleed for 2 weeks and the pain in my left side is returning. My left Fallopian tube is stuck to my uterus so could be a problem. I’m sorry you are being passed from one person to another. It’s not a good time and hopefully this time they can get COVID into control.I hope your Gp can help tomorrow.

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