Prostap injection: Hi all, not been on here... - Endometriosis UK

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Prostap injection

Pmpknpie profile image
11 Replies

Hi all, not been on here for a while. Just been to see my consultant again after having 2 operations to remove cysts and Endo last year. I'm gradually already getting the pain back I had, my doctor now says I have severe Endo, and some must be hidden under the skin?! Which they can't do anything about right now. The consultant said they aren't entirley sure what to do next... As I an young (24). They have suggested trying the injection, but I am feeling scared to do that. Crazy but this year I've just started to get back into the routine of work, and just having to cope, I'm in pain every day never goes away only if take tramadol it reduces it or stronger stuff. We are ready to start a family but understand if go ahead with injections I couldn't do this for at least another year. I'm so confused whether I am just delaying pregnancy for a pointless reason for something that may never work?!

Anybody got any advice? Did the injections help or make you feel ill?

My fear is my chances of pregnancy are going to reduce .

Thank you

Sophie

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11 Replies
aimee22 profile image
aimee22

Hi Sophie,

I was put on the monthly injections (decapeptyl) in July. The first month was absolutely horrible, my pain was exactly the same - if not worse, and I had new 'menopausal' symptoms that were horrendous and hard to deal with. I generally felt so awful and unwell.

Luckily I saw a really nice nurse who explained to me that the first month (sometimes the first two) is always worse and your body needs to adjust to it. She said that because of this, sometime ladies bleed during this time (I didn't).

After having a long chat with her I decided to continue with the injections and see if things improve. If they didn't, as I was only having the monthly injections (as opposed to the three month ones) I could stop them.

After those first 4-5 weeks, the change was incredible. I finally had my life back. The agonising pain that I had been in for God knows how many months was now bearable. Yes i has hot sweats and flushes, i became emotional and i had trouble sleeping.. but it was nothing like before.

I'm so so glad I stuck with the injections as I was able to get on with my life.. Go back to work, see friends etc.

I'm at the stage now where I have just finished my 6 month course and am waiting to start ovulating so that me and my partner can start trying to conceive. I'm young like you (I'm 23) and have been told that this can speed up the time it takes for your ovaries to 'kick back in', but i'm not sure how true this is..

Looking back, I didn't really ask enough questions about the injections, so you are doing the right thing. But please note that not everyone has the same experiences. I know i'm lucky that they seemed to work for me - but many other ladies aren't so.

All i will say is if you do decide to go ahead with them and find yourself thinking that they are not working.. Try and get past that first 1-2 months as that's when things improved for me.

I hope I was a little helpful!

Feel free to private message me if you have any other questions.

Aimee Xx

DaisyL profile image
DaisyL in reply to aimee22

I've had prostap for ten months (just finished) and taken hrt and it was amazing! I've stopped the injections now and unfortunately for me the pain is back but whilst on them I was me agajn! Good luck x

aimee22 profile image
aimee22 in reply to DaisyL

How long after stopping the injections was it before you had a period? I had my last injection 5 weeks ago and am unsure when to expect mine. I've heard it can be a year after? Xx

DaisyL profile image
DaisyL in reply to aimee22

I'm bsck on the pill so won't get one yet. Does it really take up to a year? X

vixstar84 profile image
vixstar84 in reply to aimee22

Have been scrolling through things and this is exactly what I need to read right now. It's 3 weeks tomorrow since my first Prostap injection for suspected Adenomyosis (I've had 3 laps this year for severe Stage IV endo and adhesions) and the last 8 days have been horrendous - even worse pain, bed bound, no appetite at all, intense headaches, crazy bloating, bowel issues basically a real worsening of symptoms. I'm trying to hang in there as I've heard it gets worse before better it's just how long you wait but I have my 2nd one next week so will try to keep going!! Thank you for the reassurance! 😊👍

Amyjadecook profile image
Amyjadecook

I have just had my last injection and I have had no pain what so ever which is good but I have suffered really bad with the effects off them. I've had to reduce my hours in work which is annoying. I always feel really tired (physically and emotionally) my body aches, some days I'm in high spirits the next I feel really down.

They are good in the fact my endo pains have gone but have been really challenging on my body. I'm only 20 so they are reluctant to do another lap. I go back 4th feb to see what they are going to do so hopefully they sort something before the pain starts coming back.

I've heard it can take 3-12 months for your ovaries to start working again.

Please don't let my experience put you off these injections because like I said they have completely stopped my pain unfourtuntly I have just suffered a little bit with the side effects

Xxx

FN75 profile image
FN75

Prostap gave me more than my life back - I didn't even know I could have that life! Sadly things do revert after the treatment, but it stopped me from going spare!

DaisyL profile image
DaisyL in reply to FN75

I loved being on the injections. Mine ended last week and I've been in bed off work and taking tramdol every since! What did you do x

Pmpknpie profile image
Pmpknpie

Thank you all for your comments, sorry delayed but been to well and trying to still keep at work, meaning I just sleep when get home! Exhausted!

I'm going to dry cope as I am and see if I get any luck on the pregnancy front. Not holding much hope after today's ultra sounds.

Any one else get really bad sharp pains in there left side and the feeling of something large trying to push through a snall space ( sorry don't know how else to explain it )

Had ultra sounds today and the person who did it said my left side seems ok just a small cust which she thinks wouldn't gove me the pain I'm having- she also mentioned something that no one else has- that they do say when have pain on the left side this isn't nessasarilly going to be where the problem is and could be linked to my bowel ?

Also she thinks they should be sending me for an mri scan as my right sound she doesn't know what's going on there and something doesn't look right! - this has now made me think I'm just not right and that there's sonething further wrong with my ovaries!

Thanks again - sorry but of a rant as feeling so confused and down today.

Hope everyone else is ok

Xx

DaisyL profile image
DaisyL

Injections gave me my life back. They worked amazing for me and got me back to work and living again x

Hi,

I had a 6 month course of Pro stap and the injections were fine, in fact it was great not having any periods. Being a bit older than you and at a point where my next step was hysterectomy if it didn't settle down, I was torn between wanting to fix things and the maybe of having a family. Things have settled since the Pro-Stap and if it gives you a break and you need one then do it. The Consultant said I could have HRT if I had side effects, I run stupidly warm anyway and didn't notice any hot flushes or other symptoms. I'm now in a position where we can try for a family when we are ready but the time the Pro-Stap gave me was much needed for a physical and mental break. Hope it goes well, whatever you decide.

Just spotted this was posted 4 years ago... oops. Hope all went well and is still well for you.

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