Endometriosis UK
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Decapeptyl

Hi,

I’m new to the forum and just wanted to know of other users experiences of Decapeptyl.

I was diagnosed with endometriosis on my bladder 2 years ago, I had an laparoscopy to laser the endometriosis off.

I am having the same symptoms again and I have been put on Decapeptyl.

I have been on it for 3 weeks but haven’t had much change, if anything it has made it worse.

How long does it take for you to start to feel better from take this medication?

Thanks

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I'm 27 have a cancer gene causes tumors all over my body. Throat chest bladder colon stomach and ovaries. That's sucks but doesn't scary me. Non of my tumors been cancer due to god. Problem is my 6 time having surgery on my ovaries so much scar tissue open me like a c section and all around my stomach. Now there is a tumor on my left they now have to remove everything on that side. Last time didn't see the other tumors till they open me up. Cancer tumors don't scary me what does is sex drive I have 2 kids but I want to please my man. Thinking of keeping it so we still have it do you lose all your sex drive completely?

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Hi Holly

I was started on Decapeptyl in March and for me it started to calm things down almost most straight away but I was warned that initially it could cause a bleed and a slight flare up. Apparently everyone is different in how long it takes their body to adjust to it. Are they going to see you again soon? I had a 4 week follow up and was then put on HRT as the hot flushes and in my case dry skin started to kick about then. Getting the right HRT can also take trial and error but mine agreed with me when they got the dose right. Are you under a specialist centre?

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Hi Maxi72,

To start off the pain got worse a few days after I had it, I then started to feel a lot better but then the last week it’s started to get worse again.

I saw a specialist at the hospital that said for me to get it from my doctors surgery. I haven’t got a follow up booked with my doctor but I think I will book one.

I’m not on any hrt but I’m currently suffering from night sweats and hot flushes.

The specialist suggested I was on Decapeptyl for 6 months and then see her after. So I don’t have to go back and see her until May.

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Hi Holly,

Can you please tell me how things have been since you last posted? I have been put on a 6 month course of Decapeptyl and had my first injection 2 weeks ago. I have had maybe 3 or 4 days since where I haven't been bleeding and experiencing pain. My gynaecologist didn't really go into detail about the side effects, so I'm a bit worried this is going to continue. I am seeing my GP for my next injection in a fortnight so would like to discuss my options if this is likely to continue.

I haven't officially been diagnosed with endo yet, I have had many many tests and my Gyno is 85% sure that's what it is, but she said taking Decepeptyl will confirm it either way.

Thanks!

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Hi Lucy,

I hope you’re well.

I’ve have had three injections of Decapeptyl now and after the 3 injection I have started to feel lots better. I no longer have the pain that I would get, I still get the issues with bladder urgency due to the endometriosis being on my bladder. I’m starting to feel less exhausted and more normal.

I’ve since seen my GP who has given me tablets to take to help with the hot flushes and night sweats etc. these haven’t started working yet but can take up to 2 weeks.

I believe for some people it can take a while for it all to kick in, for me after the third injection it seems to have worked. My GP said it can take a little while.

The first 2 months on it wasn’t great I was experiencing pain still and my pain would get worse after my injections. It maybe worth riding it out as it has certainly improved things for me.

The main side effects I have had is the hot flushes and night sweats and some dryness, but I have used replens as a few people online recommend this for dryness which has helped loads.

If you have any other questions, then feel free to message me.

Thanks,

Holly

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