Prostap has it stopped working for anyone

Hi have been taking prostap for 6 months it was working great but this last injection it hasnt kept the pain at bay, I have had an MRI and they have found bilateral adrenal cysts , I was sent for a ca125 test and my reading was 9, so they have just kept me on prostap for another month.I had bad pain last night in my pelvic area and back and sides, can prostap stop working, and if so why? I had a lap a year and a half ago found endo on ovaries, womb and bladder, had it lasered off also had a ablation so haven't had a period since.

3 Replies

  • Hi - I see that 8 months ago you were put on the waiting list to see an endo specialist when your endo came back after your lap. You said that at the lap they dealt with it as best as they could through laser. So what happened about the referral to a specialist as I should think you need seeing by a skilled surgeon for full excision of the endo that was still remaining. You have mentioned the possibility of a hysterectomy and have been on prostap to see if this is likely to resolve your endo which has helped with some of the pain but you feel it has stopped working.

    The problem is that even if you are at an age that a hysterectomy and ovary removal poses no other health risks (such as bone loss) you would still need all the endo excising first to give yourself the best chance post hysterectomy. Unfortunately any of the medications will usually only be effective at halting endo if it is mild to moderate and not for anything more severe as endo can produce oestrogen itself in its own cells without the need for ovaries. Also fat tissue produces oestrogen and is the main source in feeding endo after a hysterectomy. Keeping weight down can have a dramatic effect.

    Basically I should think you need to push for the appointment with the endo specialist for a thorough excision then think of the hysterectomy if it's appropriate. How old are you and are you a healthy weight?

  • Thanks for your reply, I am 43 and I am 5'4 and weight 8.7 pounds so I think that's a healthy weight. I asked to see a specialist the problem is I live on a small island in Scotland and the specialist is on the mainland. I went to a private specialist to have my endo diagnosed and can't afford to do that again. I see a gyno that comes to the island once every 3 months and he seems to know a fair bit about endo. I had to fly to the mainland for my MRI scan. I didn't see anyone after my lap, no follow up etc, only when I had symptoms again and I went to the doctor that I was referred again.

  • Hi again - your weight is good so that is in your favour but because you are still having symptoms when on prostap it is quite possible that your endo would continue after hysterectomy since it is effectively already doing so without the use of your ovaries. It would be a personal choice whether to take oestrogen replacement at 43 to help your bone health but that could stimulate it further if it is still active already. Basically, if considering hysterectomy for endometriosis you do have to first make sure that all possible endo present at that time anywhere in your pelvis is properly excised to give yourself the best chance of non recurrence. There are two NHS specialist endo centres in Scotland, Edinburgh and Aberdeen. Aren't you allowed to go to one of those? You should expect to travel for proper treatment. Have a look at my posts on finding a specialist and on endo after hysterectomy. I hope everything works out OK. x

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