My 'specialist' says that if I am having pain whilst having Prostap injection's, then it can't be Endometriosis. She's wrong isnt she?

So many women on here have mentioned pain despite having Prostap injections, so I know it's not just me. So when my specialist turned around and said it cant possibly be Endo alone, then I was more than a little surprised. My gut instinct was that she was wrong, but I bought it, and left the office crying thinking 'what the hell else is wrong with me then?'.
But having reflected, I think she's wrong..... isnt she? Woman can still have pain even when they are recieveing Prostap injections cant they? Is it time to get another specilaist? I thought she knew loads about Endometriosis... and I have always been happy with her in the past. But just by her saying this bold (and wrong) statement has made me think that she's another person who doesnt understand the complexities of the condition.
Can other Prostap users please tell me if they are still in pain, and what their specialist says about this?
Ive had 3 injections so far.

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17 Replies

  • Hi,

    I was on Prostap injections for 3 months and the side effects for me were so bad, I had to come off it. I experienced some pains, but the pains were not nearly as severe as they were before I started on Prostap. There is no doubt in my mind that the pain was caused by endo.

    Endo sufferers know their own bodies and where the pain is and how it feels. As much as we try explain it to doctors or non suffferers, nobody understands what we go through.

    If you feel Prostap is not working for you, ask for a second opinion, or another treatment option. Never settle for something you think is not best for you.

    Good luck X
  • Hi Fletch

    Generally, Prostap and Zoladex are supposed to shut down the cycle and supress the endo.

    But I am 99.9% certain that I ovulated over the weekend, despite being on my 5th month of a 6 month course. I'd know that pain anywhere....

    Seeing as she was so certain that your pain isn't endo related, did she give you any idea of what it could be? Or did she just let you leave her office with no answers?

    I've been with my gynae for years now and have absolute faith in her, so I understand how hard it must be for you to be let down by somebody you previously trusted - but at the end of the day, this is your body and your wellbeing. If I were you, I'd ask for a second opinion, as Ashley said, we women know our own bodies better than anybody

    Good luck xxx
  • Yes Chrissie, she's said she wants to refer me to a bowel specialist. But I have seen a bowel person before, and he asked me to point to where my pain was, which I did, and he said that from where I was pointing was indicated that it's not my bowel. My pain is too low down. So I just don't know now!
  • Hi sweetie, people often think that if your periods have stopped due to the various treatments then it cant be endo. YES it can and it does come back it has happened to me time and time again last op lasted 5 months I also have the coil in. I am now waiting for a hysterectomy. Keep your chin up sweetie and get a another opinion.
  • I think you've all given me some good advice, thanks ladies. I need a second opinion I think.
    The Prostap has definitely improved my pain, so in that respect it is working. I would say that I have gone from 90% pain, down to 70% pain, as a daily occurance. But despite this, I am not well enough to return to work, so really, in terms of my quality of life; I am no further forward.

    I have an appointment in mid March, so not long to wait.

    How do I go about getting a second opinion? Do I ask her, whilst at my appointment? Or would I be better just ringing the hospital?

    Thanks again
  • Go through your GP, they'll be able to refer you. Also, they should have it in your notes that you previously saw a bowel surgeon who told you that nothing was wrong in that area so they will understand your concerns.

    What IS it with some gynaecologists? I am so, so lucky with mine, and I know the vast majority of other people are in the same position, but if I had a pound for every time I'd seen that a gynae had insisted that the pain was bowel related....and another pound for every time somebody had had their bowel investigated only for the bowel surgeon to find endometriosis and refer them back to the gynae...

    I suppose bowel problems are easier to pick up with much less invasive procedures but when we KNOW that it's the endo, it seems like such a waste of time...
  • Hi Aimee,
    Im so gutted for you that you are still experiencing symptoms even on prostap- I havent been on that before but from what ive read you can still get the usual endometriosis symptoms.If I were you I would get a second opinion , you are entitled to it.As Chrissie has said it is totally dependent on the gynae you see- remember I told you about the gynae I seen at the beginning of the month who was convinced my pain was down to my bowels(it so isnt)- but when I demanded a second opinion/appointment, the second gynae didnt even mention my bowels and just ordered me to get another lap/surgery.
    I hope you keep on fighting for the right answers and treatment Aimee,
    Take care, Anneliese xxx
  • Hey Anneliesse!
    Have you heard anything new since you got your second opinion? Have you found out what surgery they're planning on doing?

    With me, it's other people's opinions that have made me doubt myself! The last time I spoke to you, I was going to ring the hospital and ask for a second opinion. But I told my family and boyfriend and they said 'no, you must trust her, she knows what she's doing, She's the proffesional not you blar blar blar' and so I backed out of calling.
    But I've thought about it, and you (and eveyone else) is right... Ive got to listen to my body! Not what people are telling me. And I lost that trale of thought for a while... But Ive seen the light! As supportive and lovely as my family and boyf are, and even; as lovely as my specialist is, none of them know how I feel.... and I KNOW it's not my bowel. So yes, I MUST get a second opinion and stop bleeding talking about it!!!! I need to just do it!
    Maybe I need to just come off the Prostap, and try something else. Zoledex or whatever it's called. But I wont be able to do that talking to a bowel guy will I? So I need to insist that I am not passed onto another department. It's important I dont.... Because the pain I am in will just go on for even longer, and I dont want that! Its been 14 months so far and not a pain free day. Im struggling to keep positive!

    On a different note... I thought I would let you know I am applying for Disability Allowance. The worst that could happen is that they say no afterall! So I can but try. I didnt know whether you'd tried it, or would think about trying to apply?
  • Hi Aimee,
    I hope you do decide to ask for a second opinion because its not fair that you are still suffering. Yeah and what you were saying about getting passed on to a bowel specialist, you dont want to go down that route, before I was sent to the gynae , I was attending the urologist since I was 18 because they were convinced it was a " bladder issue " , I got a cystoscopy and everything, but obviously it didnt make a difference because that wasnt the area that was troubling me. At the end of the day you know your own body and you know when something isnt right and if you have a gut feeling that it isnt your bowels , I would fight it all the way until someone helps you!
    Aww that's brilliant about disability allowance- I have heard about it and have considered applying for it, do you think I should give it a try?
    Also I haven't been for my pre-op assessment at the hospital yet but that's when i'm going to ask all about what the procedures going to be like, i'll have to wait until then because there is no point in asking my GP because she is totally clueless!
    Hope your well xxx
  • Yeh... Give it a try. I know your endo effects you as much as it does me so... why not? We can't work... and it disables us from living a normal life like eveyone else. So in my opinion; it is disability. The worst that they can say is no. And then you've lost nothing, gained nothing.

    Totally agree on the 'clueless' GP's. I dont even bother talking to mine about the ins and outs. They dont get it, but to be fair, they are always honest with me and say they dont get it! They always just say 'your best off talking to your specialist'. Great. I only see my specialist once every 3 months!!!
    Drop me an email when you've had your pre-op assessment.
    Good Luck xx
  • Omg I say its time to find a new dr!!! I've been on prostap for 2 yrs now and am still in terrible pain! Do not let them push you around! Stand your ground...bowel problems can be an issue with endo as I have. But the issue is the endo all over the bowels...its so sad when I hear stories like this :( stay strong. There's a great gyna outside of london...if this is easy for you yo get to message wishes hun xx
  • Thanks Heather, but I am in The Midlands.
    I agree, bowel problems are an issue of Endo... So it certainly shouldnt be a 'write off' on her behalf, which is what she wants to do.
    I'll get a second opinion. Thanks all xx
  • Hi Fletch

    Do you know what grade your endo is? Prostap and Zoladex will stop the endo being active and bleeding but if you have adhesions from the endo prostap will not stop those causing pain I know.
  • Hi Fletch.
    I am exactly where you are. I have an ovarian remnant and was in dreadful pain especially around ovulation and I started Prostap in November, have previously had Zoladex. It was only when I was still in as much pain after my third injection, and had yet another bleed that I cottoned on that something wasn't right. I have actually ovulated more since I started taking it than I was before, which is a bit mad. So I saw my consultant again last week and it's not my imagination - I seem to be metabolizing the drug too rapidly, so it hasn't suppressed my ovaries effectively yet. We are now trying with more frequent injections to see if that will do the trick.

    If you don't already, can I advise keeping a symptom diary? I recorded my pain, whether I was bleeding or not, my painkiller usage, and the dates of my injections and it helped to work out what was happening.

    I hope things improve for you soon. I do know just how you feel. I have never let the pain get me down before, but it has never been so bad for so long before, and it's driving me nuts.
  • omg Fletch - you sound exactly the same as me. Constant daily abdo pain that goes to groin, had 3months of prostap, gynae now thinks its not gynae as im still in pain on prostap. she is going to do lap for "peace of mind" but im referred to gastro too. i notice yr Midlands, i, Stoke and wondering if we have same gynae!!! my email is would love to chat xx
  • As an addition to the reply below, I travel to Birmingham womens hospital for my treatment so we're unlikely to see the same consultant. But, as you're relatively local, look up South Staffordshire Endometriosis Uk Support group on Facebook. I run a support group as a volunteer for Endometriosis uk. I will say, at the moment though im having a break from it as my endo is bad again. But like the page, keep in touch and you could come along to a future meeting when im better again. (I came off my prostap, big mistake. So stick with it)
  • Hi Claire, This post is very old now and im pleased to say that eventually the prostap started to work. It took about 5 injections until I started having some pain free days, but once they started, that was it. The pain became less and less and less until after about a year I became almost pain free. So, perseverance is the key. Keep going. My gynae was wrong. It wasn't something else. Our bodies just need time to react to these massive changes. So there is light at the end of the tunnel x x x


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