On Prostap Injections again!! Anyone else had this treatment more than once??

[Oamanda6]

Hi Girls,

I'm 8 days post surgery (full abdo surgery) to drain two cysts and treat endo. The couldn't remove the cysts as they are stuck to ovaries. Biopsy has been taken as one cyst is 'odd'. Now I've been put on Prostap and been told i might be on it for upto a year!! This will be my third time on this treatment and I know that it's supposed to last for 6 months max!! Has anyone else been on this treatment more than once??? I've had two other surgeries in 2008 and 2011 both laparoscopic. I'm 35 and have no kids. My endo is now classed as severe and that's within a 2 year span since last treatments, is this really worth it!??

X

[Chrissie66]

Hi

Each course of treatment is supposed to last for 6 months max, although there are ladies on here who have been on it for a lot longer.

Over the last 15 years I reckon I've had a dozen treatments, six months on and six months off.

As to whether it's worth it - it depends why you're taking it - I personally used it as a means of having a break from the pain, and it worked in that respect.

Did they explain why they wanted you to go back on to it? Are they planning to quieten you down and then do more surgery?

C x

[Oamanda6 in reply to Chrissie66]

Well my endo has went from stage I to stage IV since my last laparoscopic surgery to remove a 14cm cyst and treat the endo, exactly 2 years ago. And I had 6 months on the injections too at that time. So my endo seems to just keep breeding despite the treatments I've had. My consultant is surprised at how much worse its gotten in a short period of time. I just worry how these treatments will affect me on the long term. Upto a year just seems a long time ESP when it's not really worked before.

Well he couldn't really do much for me when he operated as everything is stuck. So I just dunno what to do now. So fed up!!

A x

[Chrissie66 in reply to Oamanda6]

You poor thing

That's why I wondered whether the plan was to give you a year of Prostap then go in again when things are a bit quieter in there to see if there is anything at all he can do to make things easier.

You are right to be concerned about long term effects of the drug, it's a potent medicine and certainly not something that anybody should put into their body lightly. Do you think though for the 6 months you were on it that it did any good, in terms of symptom relief?

Also, what are the main symptoms for you? Pain, or bleeding, or both? And how do you feel about having children?

C x

[Oamanda6 in reply to Chrissie66]

Well I had lots of side effects because of prostap, so it was great for helping periods but side effects.. Not so good! I suffer migraines and it can play havoc with them.

My symptoms are abdo pain constantly which got worse when I had period. I had 1st period when I was 9 and tbh I've always had problems with heavy bleeding but the pain has peaked since 2008 when I was diagnosed with endo. I'm just fed up with it all.

I don't have kids and I'm no where near 'that stage'. I dunno if I want kids, but I know I want the choice.

What's your circumstances? If you don't mind me asking.

A x

[Chrissie66 in reply to Oamanda6]

I was diagnosed at stage 4 in 1992 after a cyst burst. Prior to that I'd had no real symptoms. Despite the fact that in the middle of it all I lost an ovary to endometriosis, I remained remarkably fertile but unfortunately couldn't hold on to the pregnancies; I had 18 miscarriages, all very early. We pursued private treatment for the miscarriages which made the endo ten times worse and now I am 47 with all of my organs fused together with inoperable endo and just hanging out waiting for the menopause to hit. I don't bleed anymore because of the Mirena, which has been a Godsend, but I'm in pain pretty much 24/7, and only Pethidine comes anywhere near touching it.

Gotta love being a woman!!

C x

[Oamanda6 in reply to Chrissie66]

Dear god! Here's me moaning and you have been through so much more :-(. So sorry to hear that.

I've lost one child when I was 18weeks, it's put me off trying again as I was so unwell. I have been told I would get IVF if I did want to try, but as you have mentioned, it doesn't do the endo any favours. Hormones are my enemy. I would consider adopting or fostering.

I just think people don't understand how bad things can be with this and this website is a god send to me. It's lovely to have support and hear other people's stories and opinions.

Ax