Going for the prostap... I think.. - Endometriosis UK

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Going for the prostap... I think..

roobiedoobie profile image
6 Replies

Hiya..

I was diagnosed with endometriosis a few yrs ago during a laparoscopy.

I've since had another lap and I go for the follow up on Friday.

The consultant said there was still endometriosis on my bladder and bowel that he couldn't get without risking damage.

I felt ok for a while but in the last month or so pain has returned, he said if I was suffering at all when I returned, I would have to have the prostap injections to clear it up.

I've looked into this before and I'm still not 100% sure it's something I want.

I'm petrified of gaining any weight as I'm struggling to shift it!

Anyone got any input? Good or bad?

Thanks

Xx

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roobiedoobie profile image
roobiedoobie
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6 Replies
Cola13 profile image
Cola13

Hiya, I never did the prostap injection but I did the zolodex injection for a few months before my surgery and for 3 months after having major surgery last year. Its caused medical induced menopause and slowed the endo from developing more. I loved having minimal pain because I wasn't having a period but the side effects weren't fun. Hot fluses were beyond crazy like I'm wanted to run around naked crazy loool. I could only have 6 injections because of the side effects of what is in the injection. I would say make sure you defiantley research this injection before making your decision.

I hope this helps x

NoEndoInSight profile image
NoEndoInSight

Hello Roobiedoobie,

This is the Special Product Characteristic leaflet for Prostap published by the drug’s manufacturer:

medicines.org.uk/emc/produc...

My recommendation would be that you also give your loved ones a copy of this to read so that they can help support you when you on this treatment. I would also recommend that you take a copy with you to any appointments you have with your GP / Specialists so that, if you do start to suffer any side effects, you can address them quickly and appropriately. Sadly not all doctors are very familiar with this kind of treatment so it can be really helpful to be able to refer them to the SmPC and say “I’ve started to experience this new symptom, Prostap’s SmPC lists this as a side effect of treatment so what can you do to help me manage it?”

Prostap is a GnRH Analogue/Agonist and suppress endometriosis symptoms primarily by suppressing your body’s production of oestrogen, but like all drugs it does have side effects. Many of the most problematic side effects are specifically caused by being put this oestrogen-deficient state - as your body uses oestrogen for so many different vital processes. This is why many consultants prescribe Prostap alongside a therapeutic dose of “add-back” HRT - to provide you with enough oestrogen to avoid severe side effects without reactivating your endometriosis. It can take a bit of experimenting to find the right brand and dose of HRT for you (every women is unique), but it may be worth chatting to your Specialist about your HRT options as it can be the key to this kind of treatment’s success.

Sorry that was such a long reply, but I hope it helps, x X x

PandoraPenguin profile image
PandoraPenguin

I had 3 months of Prostap before my last lap. It did nothing in terms of pain. My hair was a bit duller and my skin bit drier but a change in toiletries solved this. I didn't gain weight, in fact I lost but that was down to not eating due to pain and pain meds and working when sick. I had some hot flushes and night sweats and some moodiness. Night sweats were worse and I was already having some anyway, I had to keep spare PJs handy and a sheet to wrap up in so I didn't have to try to sleep on sweaty sheets, plus all the laundry. It was all really manageable and nowhere near the horror I thought it may be.

wanwood profile image
wanwood

Would you be able to have HRT at the same time to minimise the side effects? It makes a big difference.

Tillyfloss profile image
Tillyfloss

Hi. Hope you’re having a good day. I had 6 months on prostap; I didn’t know anything about it but the specialist said it was my best option and I was too shell shocked to argue! So glad I had it worked a dream no pain and only the odd hot flush. Took 10 weeks for my cycle to return and I didn’t realise they could be virtually pain free. It doesn’t agree with everyone but it’s got me back to being a wife and a mum 🌞.

Good luck

roobiedoobie profile image
roobiedoobie

Thanks for the replies everyone.

I went to my appointment today and given how things were when I had my op back in Feb and the fact the pain is back, he said I have no other choice than to have the prostap with livial.

He said my endo was extensive and stage 5.. Yet the internet claims stage 5 isn't a thing.. Lol

I go on Monday for my first injection.. Hope it helps!

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