difficulty getting Prostap injection - Endometriosis UK

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difficulty getting Prostap injection

SLIB profile image
SLIB
12 Replies

hello fellow Endo patients. Is anyone else stuck in the middle of the ridiculous scenario of not being able to have their 3rd Prostap injection.

I was told by Preston Gynae it had to be them,they cancelled the appointment the day before I was due to attend are now refusing and stating my GP should be doing it as part of the CCG agreement. GP has refused saying its not them and should be Preston Gynae,in the meantime I'm doing all the ringing round and have started my periods again with Endo pain as it has taken so long and still got to wait until August. I do hope they don't say no as I might very well explode in frustration ! And in the week they announce all new doctors willbe trained in women's health, inc Endo care, what about existing GPs?sorry for the rant but it so ridiculous

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SLIB
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12 Replies
PurpleChase39 profile image
PurpleChase39

Did gynaecology write to your GP ?Are you having add back, hrt that they want your doc to continue to perscribe?I would speak with your gynaecologist secretary and ask them to sort ? If you've been seen by them they should be sorting it for you.

I'm due to start prostap 3 injections next month and having tibolone hrt to take with it. My gyno wrote to my gp asking them to continue my hrt after they had given me the first prescription.

Hope you get sorted xx

SLIB profile image
SLIB in reply to PurpleChase39

Thankyou PurpleChase39 the problem is Gynae did write to GP only asking them to provide 2nd injection and now Gynae won't provide another appointment and GP is refusing. So fed up that I have to do all the ringing around and complaining and they won't talk to each other

PurpleChase39 profile image
PurpleChase39 in reply to SLIB

It is a nightmare how you constantly have to chase up everything 😞 as if you dont have enough on your plate. Really your gynaecologist should carry on giving you the injections if they gave you the first one ?

I hope i dont have this trouble with mine. I was supposed to start this month and that's when i contacted my gynaecology secretary to ask when it is ? She got back to me saying 3 months after your first one, which i told her thats what im ringing, to find out when is my first one is ? as you haven't sent me any appointments? 🤦‍♀️ my gynaecologist told me in June that i would start July.

I hope you get it sorted with PALS 🤞

bertie1606 profile image
bertie1606

Hello, how frustrating for you! My gp has always done mine after a letter from my gynae. I'm on my second course of 6 injections. If you originally were having them done by gynae then they really should be continuing them or write to you gp to get them to do it. I think it's time to get PALS involved. If you look at your hospital website there should be info on how to contact PALS and explain to them what's going on x

SLIB profile image
SLIB in reply to bertie1606

Hi Bertie, already contacted PALS and now complaint to GP, yes MP is next

bertie1606 profile image
bertie1606 in reply to SLIB

It's frustrating how we have to jump through hoops just to get the treatment we need, best of luck to you x

PALS and if no luck there go to your MP for help.

Mustang2598 profile image
Mustang2598

Hi,

Preston prescribed prostap for me until I have urgent which could be 12-18 months. Not had any problem with my Gp doing it.Preston should have put it in a letter though. Gp can’t give it without Preston saying you need it.

I’d contact pals if u aren’t getting anywhere with Preston. They can sort it for you without all the telephone calls.

vic777 profile image
vic777

HiYou could also try the CCG, ask them to resolve the issue if its funding related.

lol84-07 profile image
lol84-07

I've had this issue last few weeks chasing, (lead consultant was off with covid) they've finally sent a letter to GP, so just waiting for them to get it in then another stab for me, oh the joys. Coincidentally I found out that the team completing my surgery dual gynae/uro/Colo only get 1 day a month for the complex surgeries therefore urgent (I'm about 14th in the queue) is around a 12 month wait 😭

SLIB profile image
SLIB in reply to lol84-07

Hi that's really frustrating to hear, I hope you don't end up waiting as long as that

lol84-07 profile image
lol84-07

Thanks, I've been in the urgent list since last November, had an MRI which showed how bad inside was so I was put into the complex list, unfortunately I've got full thickness 3 inch bowel/rectum involvement and that's what they could see on the scan from December, so hoping the prostap as at least halted any progression xx hope you are able get your jab sorted soon for some relief xx

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