Can no longer wee,can this be due to endo??

Hello all

Just wondered if anyone has any experience of endo causing bladder to stop working properly?? My 1st appointment with gyni last may for pain n infertility,coincidentally showed me retaining urine.i was not aware & can hold up to litre wee without realising (healthy bladder holds 300mlish before need wee) after a whirlwind (& quite frank nightmare few months) I am diagnosed with severe endo (following a lap),pain most days,had failed IVF & have been prodded & poked within an inch of my life :-( my bladder doesn't work at all now & I self Cathetarise 5-6 times a day.the bladder consultant will not commit to bladder not working due to endo but it's got to be that surely??? It's everywhere else. Well hope I have not gone on too much I am quite a strong person but feel very alone some days (family many miles away & few friends here) thanks anyone,keep strong :-) (or have a big glass of wine) Lou x

13 Replies

  • God you poor thing I really feel for you. I've had a couple of nasty UTIs since my lap on Dec 18th and I've felt miserable, so you have my sympathy. I don't have any answers I'm afraid, although I wouldn't be surprised if it was endo. Could it be an infection?

  • Unfortunately not (although I have had 3UTIs since diagnosis) not stones either(had CT,MRI etc) i had ureodynamic tests that show my bladder basically doesn't push out my wee.i reckon the endo has just damaged it beyond repair?? desperate to find anyone else who may have same (not that I want anyone else to have it,if u know what I mean) thankyou for comments,speedy recover x

  • Have they checked you for kidney stone, ct scan or X-ray can show it up, I had a 9 mm stone and whilst I was in hospital the lady next to me had the stone in her tube from kidney to bladder and she couldn't wee, just a thought, hope you get sorted some,xxx

  • I don't know if this will help anyone but my friend went today with bladder issues and they have said no caffeine as can cause issues. May be worth stopping if you drink coffee etc see if helps

  • Hi, it might be worth asking your gp to refer for an ivp test which is a test to check your urinary tract with xrays taken at time intervals.

    Hope you get this sorted soon xx

  • Hi,

    I know exactly how you feel, for years I had uti's and they did every test going. It turned out I had a narrow uretha and I had bladder retention. My bladder is enlarged due to the retention. Like you I had to catherterize, gradually its was reduced to once a day. I have had 6 urethal dialations. Now I don't catherterize anymore and no longer see the urologist. My endo seems to have settled in my bladder and is painful in other areas now. I still get uti's but not as frequently. I know its hard but keep positive and if ever you need a chat you can always sende a message. Xx

  • Hi, I'm new to this forum but read your post & felt compelled to respond. I have stage 5 endo, had 2 laps, failed ivf attempts, have been prodded & poked over the last 2.5years. Pain is controlled temporary by zoladex now so is more bearable.

    I can relate to your problem with difficulty in having a wee...please get it checked out. I had the same in October, had a renal tract 3 scan last week on kidneys and have since discovered the endo is causing issues with my kidneys (one kidney function is now at 30% rather than 50%). From what I can gather the endo has attached itself onto the kidneys (as well as bladder, bowel & other areas) and also the uretha pipes - causing urine to not drain properly & back up to the kidney...hence the problems. I should have been having a 3rd lap this week but the op has been cancelled & I'm bring referred to a different specialist who can hopefully deal with this. Hopefully you haven't got this added complication but thought I needed to share my experience.

    Endo is a long and painful journey - I try to remsin upbeat but the pain can be quite draining.

    I wish you all the best x

  • Hiya joD_123 thanks for you advice.i have had a test where they hooked me up to machine (via bladder & vagina) n monitor various activities n results.their conclusion that my urether opens but I have no pressure of bladder to push out the wee.they don't know cause n will not commit to saying endo,said it just happens sometimes n doubtful will return to ever being able to wee without self cathetarising.Cant complain as NHS & they have been good just want more answers n poss other opinions,must get saving for private.its rubbish hey sorry to hear of your struggle too,it's just rubbish if you ever need message/talk/email pls do so. All the best Lou :-)

  • Dear Loubielou1,

    I am sorry to read that you are struggling in this way. I can but offer you some information and some useful links:-

    You also reference the delicate issue of fertility so I have included some detail on endometriosis and fertility and some associations you may or may not already be aware of:-

    I do hope this helps.

    Take care,

    Simonetta, Endometriosis UK

  • Thankyou Simonetta this is very kind of you to send to me,I shall read with interest much appreciated regards Louise

  • Hi LoubieLou1 just wanted to share my experience with you. I know exactly how you feel. I really struggled to have a wee for quite a while, it got to the point where I was having to massage my own bladder to try and make myself wee. Id sit on the toilet for ages and ages knowing I needed to wee but nothing was coming out. This improved when I started having injections monthly to put me through temporary menopause. Really hope you get some treatment that can help x

  • Hello Louise, how awful for you to be going through this. I can't say what the cause is for certain. One possibility worth considering, is adhesions from previous operations. Even one laparoscopy can leave adhesions. If one has wrapped itself round your bladder, this could account for your problems. Perhaps you could ask about this, next time you see your Doctor/Consultant.

  • Thanks azure sky & sammy. I have resigned myself to my bladder never recovering & cathetarising for rest of life now.i do blame the endo as no one can tell me diff TBH.It started before the lap. Just started inj to put me in the menopause so you never know.i will never give up hope to be normal & pain free again best wishes loux

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