Please advice needed - remaining pain to wee !!!

I went for my consultation after laparscopy to remove endo. Told him I still experiencing pain (sometimes extreme) when weeing (a symptom i originally went with prior to endo diagnosis) - however because it is a lot of the time rather than just along side my period, he doesn't believe it is endo and has referred me to urology!!

does anybody else out there with endo have pain passing water most of the time.

Please help as im not confident of this dismissal that it could b endo on my bladder as i dont believe he looked at bladder during lap???

xx

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  • Hi Claire87, I am experiencing the same thing after my lap, however I only got the pain most of the times when I have my first wee on mornings. This occurs even if had my first wee after 3 hrs of sleep. The pain comes and goes and I was given antibiotics for it but the pain still comes and goes. I also had a urine test and everything was clear. My doctor thinks it is the endo causing it, and said if the pain continues he will put me on continuous birth control pills for a while. For the last couple of weeks the pain has subsided however the pain still comes and goes. It could be the endo causing it, don't know. Sorry I can't be much more help, but I thought you should know that I experienced the same thing. At one point I thought it was the zoladex treatment causing it. I even posted a question on here asking about it.

  • Hi Claire

    I have a massive endo lesion on my bladder. It was one if the symptoms that first led me to getting checked out. I did things the opposite way round to you. I saw a urologist who carried out a cystoscopy and biopsied endo which had grown through into my bladder. I'm still under the care of a urologist and an endo specialist. The uro keeps an eye on my bladder and kidneys etc and they plan to work together surgically so being referred to a urologist doesn't mean they don't think its endo but the kind of investigation you need to be sure needs to be run by a urologist ( in my experience). Hope this helps a bit!

  • And yes I get pain all the time when weeing but worse around my period.

  • Thank u so much - this does put my mind at rest i thought i was going to have another 7 year fight on my hands!!!

    Thought because i said pain is most weeing times (yes esp in morning or full bladder) he's referred me as he thinks it may be kidney stones, which i personally have no belief of what so ever !!!

    What do the urologists do.......test / scan wise?? If i go in and say i have endo will they test me straight away for that on my bladder?? x

  • You definitely need to let him / her know where you have endo in the rest of your pelvic cavity. If it's on your uterus for example then it's right next to the bladder so could easily have grown on there and stuck the 2 organs together. If you say you have bladder pain they will generally need to look inside using a cystoscope which is a rigid camera. Will be done either under local or general anaesthetic. Once it's confirmed they tend to want to keep an eye on your ureters in case the endo spreads as it can block them and cause damage to the kidneys. They usually run a Mag 3 Nuclear scan to check this- injection into a vein then watch your kidneys while you lie under a scanner. Mine hadn't spread but the lesion in/ on my bladder is big and I'm having to fight to get them to operate on it. I want it gone as I had pain on emptying, pain on filing up, a feeling of never being able to empty it and constant pressure. The only relief I've had is prostap which has been great for last 3 mths but about to end. :-(

  • aww dear. Well the endo was my uterus , my ovaries were stuck with it and also some on my bowel, had it lasered in sept. But i have this feeling he didnt even look at my bladder as he showed me no pics or even mentioned it when i explained about the pain! Right well at least i no what im going into now. Just feel like its one thing after another, grinds you down doesnt it?!!

    I worry that it on my kidneys, in fact i posted the other day if u could get endo on kidneys an someone replied yes :(

    Yes it terrible u have to fight so hard , as i say it took my nearly 7 years for someone to listen and diagnose endo, u know your own body, so just keep fighting hun. xxx

  • I had lap a few weeks ago and I also have this pain. I had it before too but much worse since. Just the last day or two its not every single time I go but a lot. Really painful in the morning, I can't stand up straight after it.

    It doesn't sting. It feels like a pain inside possibly bladder?

    Is this the same as you have?

    I'm afraid I don't have any answers for you but I I feel glad I'm not the only one! My g.p said it was probably just pain after. the lap but I feel like it's more than that.

  • yes funny enough i had this pain as a symtom as well as pain to poo, since him lasering it all off my bowel 8/1 0 it no longer hurts, which is what leads me to believe that i have endo on bladder :(

    Yes like pressure right under the pubic bone, and yes standing sometimes after can feel painful to.

    The only reason gyne refered to urology is because i said pain is 8/10 of weeing, he said he think kidney stones, but im not convinced - i seriously believe endo has gone onto bladder. xx

    Its not pain after lap otherwise we'd have it wirth other things hun im sure!! get yourself back up there xx

  • I have pain as my bladder is filling up, so really, constantly. When I go loo it goes for around 15 mins, sometimes. I know I have endo back on my bladder because my symptoms are exactly the same as before he removed it at a previous op. I am having another lap in 2 weeks and he is aware that I have it back on my bladder amongst everywhere else. X

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