Prostap - when do I start it?: Hi ladies... - Endometriosis UK

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Prostap - when do I start it?

Dartmouth93 profile image
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Hi ladies, I recently paid to see privately a BSGE accredited endo specialist who was great. He thinks my symptoms all relate to endo and thinks it was missed in my first lap last year and so wants me to have Prostap for 12 weeks to see how I react, and if my symptoms improve then we know it’s my womb etc causing the issues (I’ve previously been told by other DRs it’s probably just IBS). Since my op in august I’ve only had 2 periods and I’m currently 40 days late (defo not pregnant). The leaflet he gave me on prostap says I need to have the injection within 5 days of starting my period, is this the only time I can have it? I’m just getting frustrated and a bit low having to wait because I have no idea when I’m going to come on because I’m so irregular at the moment 😞 also any advice or experiences with prostap / having a negative laparoscopy would be really appreciated. Thank you x

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Dartmouth93
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Moon_maiden profile image
Moon_maiden

I’ve had Zoladex, it didn’t help with the pain. My regret is not having MRI before starting it to compare with after. I think mine has been underestimated the whole way along. I think the main thing the Zoladex did was to sort of calm it internally which made the MRI not show what was there.

Dartmouth93 profile image
Dartmouth93 in reply to Moon_maiden

Thanks lovely, I’ve heard so many mixed things it’s hard to know what to think isn’t it as we all react differently xx

plotments profile image
plotments

I've had prostap on two separate occasions and they never mentioned anything about it having to be started at a certain time of your period, although it does say that on the leaflet. They just ask when you had your last period. First time on it had bad menopausal side effects, hot flushes night sweats painful joints and a very low mood, but endo pains eased after the second month. This time round they have given me HRT to help with side effects so I haven't had any, but it has put my endo symptoms on a major overdrive so hoping that will calm down soon. I have my forth injection in three weeks time.

Good luck

Dartmouth93 profile image
Dartmouth93 in reply to plotments

Oh that’s interesting! I’ve just rang his secretary to see if they can let me know whether I can have it now rather than wait as I’m going months without a period at the moment. Thank you I hope it calms down for you soon x

Lindle profile image
Lindle

I think I have replied on the group I run, but will repeat it here for the benefit of others.

You have said that your consultant wants you to have Prostap for 12 weeks to see how you react, and if your symptoms improve then you know it’s your womb etc causing the issues. But be aware that symptoms from your womb and symptoms from endo are very different things. The injections stop the ovaries from producing oestrogen and so stop your endometrium building so you don't have periods. Also the hypo-oestrogenic state causes reduced inflammation within the pelvis and in the body generally. So if the pain goes away there is no way of knowing in any specific sense what is/was causing it. It certainly doesn't mean you have endo.

Conversely, if it does nothing for the pain and you have symptoms of deep endo it is more likely that you do have endo and that it is deep because deep endo is fibrotic and causes nerve impaction and adhesions that stick organs to together so they pull on each other. These sorts of pain won't be resolved by Prostap.

It is a very powerful drug with potentially serious side effects and it won't actually prove anything or rule anything out. So I should think carefully. You don't have to take this before having a lap - a lap should be based on your symptoms and not on a reaction to Prostap.

When you first have an injection it causes a dramatic increase in oestrogen levels before the ovaries shut down (the flare effect). This can last up to 3 weeks or so. The reason you should have it within the first 5 days of your cycle is that your oestrogen levels will be naturally low then so you will tolerate the surge better. If it is started, for example, mid cycle when the natural oestrogen level is peaking and the endometrium is at its thickest you would then experience sky high oestrogen levels and the endometrium would continue building to excess. You would then expect significant bleeding, and probably pain, once things finally settle.

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