Will I need another lap for possible endo on kidneys, urethral tubes & inside bladder?

Hi everyone,

I have stage 4 endo on & inside my bowel, on my uterus, fallopian tubes, ovaries, rectum, outside of bladder, endo & scarring in the pouch of douglas, aswell as andenmyosis, pcos & adhesions. In the last several months I have had endless kidney & bladder infections, as well as not being able to wee properly, awful pain & blood in my wee. Last night I ended up having to see the out of hours GP for yet another infection.

I am due to see a urologist on Thursday, as one of my GP's concerns is that the endo could have penetrated my bladder wall, & spread to my kidneys & urethral tubes. He told me that it was very likely that the first thing the urologist will want to do is give me a cystoscopy to look inside my bladder. But I know that this will not be able to see what is going on with my kidneys & now I am wondering if I am going to need to have another lap.

Has anyone else been through something like this & able to share their experiences of give any advice?

Thanks :)


11 Replies

  • Hi - when you say you have stage 4 in all those places, how has it been diagnosed and what has been done treatment wise?

  • Hi,

    Was diagnosed via a lap last april as well as a colonoscopy around october time. No treatment has been done so far as the supposed specialist I saw last year just fobbed me off so my gp got me put under the care of the bowel team as well as a referral to pain management & gynae services. All I have at the moment is painkillers until they decide what to do x

  • Crikey, poor you being left like that. But actually it is a good thing. You have very complex endo and should only have this operated on in an endo centre where there will not only be a highly skilled laparoscopic surgeon (specialist gynaecologist), but a colorectal and urology surgeon who will co-operate in dealing with everything. Have a look at my post on how to find a specialist - this really is vital for a case like yours. x

  • Thankyou hun. The guy I was sent to was supposed to be a colo-rectal endo specialist but he just fobbed me off- my gp has spoke about sending me to the endo centre in Southampton but I've been seen at 3 different hospitals now & I just want to get the tests out of the way. Will definitely look at your post though. I have a blog which explains alot about my condition too: dizzydollypop.blogspot.co.uk/


  • Hi Dolly

    I'm speechless really that you are being left like this being sent from pillar to post between hospitals that don't know what to do with you. Whilst I said that it is a good thing that no one has yet done much with your insides to mess things up more your endo will be getting worse and it is vital that you are dealt with as soon as possible in a specialist centre where there will be an expert gynaecological laparoscopic surgeon working with colorectal and urology surgeons too. Your GP should be getting onto this as it could take some time to get an appointment through while these other tests are being done. Just be sure not to let anyone else operate on you in the meantime.

    Could you private message me the name and hospital of the colorectal endo 'specialist' that fobbed you off so we can check him out. x

  • Hi Lindle :)

    I know, it's absolutely appaling! Its gotten to the stage where I'm debating going private- I was doing some research last night & been looking at my options again- decided that I'll be going back to my gp in the next week or so & having a big chat about getting a referral because it's gone on long enough :( will inbox you the details of the "specialist" & post links to pages about him xx

  • P.s- this was the post I made after the first appointment I had with him:


    It took me days to get my head around just how shocked I was over the way I was treated!!!


  • Hi there

    Could I ask if you have kidney pain? They found endo on my bladder in my lap. I've had blood in my urine but tested negative for infection. They've ruled out kidney stones as well. I have had excruciating kidney pain for 6 months now. Im now on morphine for the pain.GP says it's prob referred pain from the endo on bladder. My consultant semi stumped. Just had mri and waiting for results. He said probably surgery after that.

  • Hi hun,

    Yeah I get alot of kidney pain :/ I'm on a cocktail of pain stuff including morphine. They know I have endo on the outside of my bladder & the big concerns are that it has penetrated into my bladder & spreading to my kidneys & urethral tubes. My left side is usually the worst pain wise. The urine dips usually show infection as well as blood & protein. My GP has said I'll almost certainly have to have a cystoscopy & I'm worried I will need another lap to look at my kidneys. Have they ruled out the possibility of kidney endo with you? Xx

  • Thank you so much for replying! It's rare to find ppl with bladder endo and even rarer to find those with kidney pain.not that I'm happy anyone is suffering.

    When this all started it wasn't too bad but got progressively worse. The kidney pain is either a throbbing/aching that lasts for hours or sharp stabbing pains that make me cry out and whole body spasms. The pain started in my back at the ribs and sharp pains round my right side. Now I have the pain at the back on both sides and sometimes it travels down one side. Atm I'm on tramadol,morphine, amytryptaline and naproxin. Even then I'm still having pain.

    No one has even mentioned the possibility of endo inside my bladder to me. I did read up on it and found that kidney pain is a symptom of endo inside urinary tract. I also read about it travelling up ureters so I am worried!

    I can't believe that after they found endo on outside of bladder in my lap and with my history of kidney pain, no one seems bothered about checking inside urinary tract.

    I'm sorry I can't offer advice in your situation, but I really appreciate you taking the time to talk to me.


  • Snap! Your pain sounds exactly like what I get! I also find that I get blood in my wee, sometimes it feels like I am peeing acid, hurts to wee, my bladder won't empty properly & i find I have trouble "getting started" when I need to wee. They have me on morphine, tramadol, co-dydramol, codeine, co-codamol & paracetamol, which I can take depending on how much pain I'm in, as well as a load of other stuff.

    Whenever I pick up my monthly prescriptions I get some funny looks walking out with what seems like half the pharmacy in these two huge paper bags! My room looks like a bloody chemists lol.

    It sounds as if you really need to get checked out again hun- I'd hate to see someone else suffering in the same way as me. Don't worry about not being able to give advice- it's comforting to know that someone understands what I am going through! & I am glad to be able to talk to you- if you ever need a chat then just feel free to message me anytime :) xx

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