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Endometriosis UK
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STILL HAVING PERIODS AFTER 6 MONTHS OF PROSTAP...

Hi All

I have stage 4 endometriosis. Was diagnosed last September. I have now been on prostap for 6 months together with the pill and still having periods. Is this normal? I have had all investigations as to how severe the endometriosis is and where it's damaging/sitting. I am back at the hospital for discussions on Tuesday but I know they are just going to suggest to stay on prostap as the operation is major. Anyone with any advice would be great. Thank you x

10 Replies
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Exactly the same as me!!! I have just had my 5th Prostap injection. for the first 4months I was told to still take my pill but I have still been having heavy periods throughout. So this month I have been told to stop taking my pill as that may be affecting the Prostap working properly. I know that everyone's bodies work differently. Just tell the doc you've still been having periods and query whether you should be taking your pill still or not. I was told only to take my pill (mycrogynon) to counteract the side effects of the Prostap.

I really hope you get the answers you want on Tuesday 😊. Sorry I can't help more. X

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Hi hun it's awful isn't. I am on that pill too. Last time I mentioned I'm still having periods they said it's fine. But I keep getting different answers. How long have they told you you can stay on the prostap injection for? They have told me no longer than 12 months but then what happens after the 12 months :( x

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My doc seemed to suggest that having periods isn't quite normal but that could just be me misunderstanding her. My injections don't seem to be affecting the pain either - I am in just as much as I was without the Prostap :(

All my doc has mentioned so far is me doing a 6month course so I have one more injection left if that's the case - I am happy to stop though if it isn't doing anything. Just not sure what the next step is for me :(. x

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I'm on the pill and injection and they seem to think if I now stop the pill the injection should fizzle my periods out. I'm not bed bound how I normally would be but still have it tough. They have said I can stay on for another 6 months but then no longer. My case is being reviewed for a 2nd opinion in regards to surgery. Will find out more end of May. You just feel like it's all 1 big rollorcoaster and getting nowhere. :( I know exactly how ur feeling hun x

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Yeah sounds like your in pretty much exact same situation as me. I just hope I don't have to do another 6months of injections tbh.

Yes! I am just fed up of this roller coaster though haha. I have my fingers crossed for you that you get the answers you want in May xx

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What stage do u have hun do u know? Thank u I hope sorted soon for u too x

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I don't think I've been told which stage but from what I understand it is just mild. X

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Hi - I'm not entirely sure why GPs are giving the pill as well as prostap as the level of oestrogen in the pill might be likely to be adding too much back. But the main issue for you is that your endo sounds significant. Prostap would normally be ineffective for stage 4 - has it stopped your pain? Can you let me know from your surgical report where your endo is?

Are you being seen by an endo specialist? Have a look at my post on finding a specialist to establish if you are. If not then stage 4 requiring a major op must only be dealt with by a highly skilled surgeon. x

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Hi Lindle

Thanks for your reply. It's mainly my bowl and bladder. Not inside just yet it's pressuring on them both. I have been to my appt today and she's advised a 2nd opinion has been requested in regards to surgery. I'm under pennine Oldham which are specialist I've seen 3 of them there. Bowl bladder and endo. I mentioned still having periods whilst on prostap and now she's suggested to stop taking the pill and my periods may fizzle out bit now I'm not sure what to do. I'm back end of May to see what the 2nd opinion results are but also not sure if to take the surgery or carry on meds. What would you recommend? It's all so hard n difficult x

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Hi again - I have been looking through your posts and the first thing is that so far you have only had opinions from the one place. As you have endo on your organs and not inside and the prostap has helped your pain then you might find that Liverpool gives you a different opinion on surgery. Most endo surgery, however complex, can be done safely through laparoscopy by a very skilled team of surgeons. Obviously wait to see what they say but the most important thing is that you feel confident that they are confident in their ability. The top surgeons do this sort of complex surgery a lot and perhaps your current specialists might be looking at a worst scenario outcome due to their limitations. x

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