Endo & bladder/kidneys

Hi ladies

So in July had an awful Urine/kidney infection.

Having 2 lots of antibiotics I got rid of the infection but pain doing repeat yrine tests to check it came back high red blood cells & high white blood cells. Sample would be sent off to be grown & nothing could be grown so no infection.

However I have had to do repeat urine samples & blood tests every week since then.

So it came to ahead two weeks ago when I literally can't function like a human being now, I've not been right since July-

Chronic tiredness

Pain in tummy

Pain in kidney area & base of spine

Sometimes pain when seeing more so it's just after I've weed I get terrible pain

Constant urge to wee but then a dribble

I'm drinking & consciously trying to drink more but the fuller my bladder the more pain I get

I'm eating but not much really (I love food!)

I'm 12st as well 5.5.

Periods mixed but flooding

Pain when I open bowels




Every limb aches by the end of the share I feel 100years old

My head is puddled

Temperature up & down up & down

So now I've had several antibiotics form my GO they sent me for ultrasound which was horrendous pain but showed swollen kidneys & bladder doesn't empty properly

So the GP actually rang the new consultant urologist to explain & move situation along then rang me at 8pm at night to tell me what was said.

I got an emergency consultant appointment with urologist who said its definitely not endo.

He said he wants to do a utomology test (blow bladder up like a balloon via your urether & rectum & see what it does with all fluid) I really do not know if I want this test seriously I don't.

He said its not stones as none on scan.

He said for reason he didn't know or not telling me is my kidneys swollen not draining properly so the urine us back filling & poisoning me.

So then I went to see urology nurse because he wants me to self catherterise myself everyday.

I goes to see her & have a great time learning this new life skill for my CV.

I hve to self catherterise 3xs a day. This is to drain old urine out & flush my kidneys.

But I managed it once with nurse, once at home but I damned near passed out.

Then failed attempt yesterday morning but blood instead. Then failed attempt yesterday afternoon then bloods but a trickle like I'd scraped something I hope but no urine whatsoever!

I rang urology nurse & left a message no reply.

Today I'm going to ring my GP because they seem to be more forthcoming with ideas at lest as to what it might be & not keeping anything back.

The cons was brilliant very understanding of endo in no way dismissed it but said it definitely wouldn't cause this.

Who knows!

I'm off work or the first time ever, I'm still trying to be mum get the washing done etc & take my lad to school so when I'm driving I don't take tablets but then I end up in a star of mixture of pains.

I can't win I feel

Like I'm 100, I feel guilty for not doing catherterise right & am I wasting their time is it something else?!


#endo -#catherter #urine #kidneys

6 Replies

  • Oh Lizzie I just want to give you a massive hug!

    I've been self catheterising since December and I promise you it does get easier.

    Even now sometimes I feel that I can't do it and it just isn't going in. I feel it helps to stop calm down and try again later.

    Also there are different catheters you can use so speak to your nurse and she can give you some different samples to try.

    If you would like pm me and we can talk, but your not wasting anyone's time. It's not something you have ever had to contemplate having to do and it takes time to get your head around it and learn how to do it.


  • Hi

    I just don't know if after the first one it's necessary to of this myself......

  • You are not wasting anyones time. This is important. I have recently been diagnosed with hydronephrosis (fluid in kidney) but most likely due to scar tissue restricting the urine flow to the bladder. It is uncomfortable and yes it makes you feel grotty.

    Re the test they want to do, it doesn't sound fun at all but these things never are. It would be worth it to hopefully get to the bottom of things and maybe even make you feel better

    Good luck

  • I think that's what I have too, I know

    I have swollen kidneys from a build up of urine which is poisoning your body.

    Which in its self is hydrophonesis. But the urology consultant never actually said that word.

    He said he's not sure but would find out.

    In a kind way he was matter of fact but very good he didn't dismiss endo as a dies ease at all in fact he asked 'do you have any health problems' & I said endo to which he replied 'that's a horrid debilitating disease'

    But went onto say it wouldn't cause this.


    Maybe it would if it's scar tissue I've had 3 laps in my life so plenty of scar tissue there even if it's not endo actually in or around bladder.

    I don't want this test now because what happens if I go through all that with tubes up my bum whilst on awake I might add for him to say there's nothing there your fine.

    I have just stopped catherters as blood & just picked up my 7th lot of antibiotics last night so to leave it till Monday then try again......

  • For me they think my renal pelvis was distended because so much urine had backed up. I don't think / know if endo is causing or affected by it (this all happened after a lap in December, it seems there was some nerve damage). I've been on antibiotics since April now and although I have still got some infections I haven't become as unwell as I was getting previously.

    I'm also waiting to have urodynamics test. It's had to be postponed twice. I was really worried and worked up but the nurse showed be the tubes and what goes where and I'm not so worried now. I'm trying to see it as something I have to get done to hopefully get things sorted.

    I don't think you will be told everything is fine and you won't have wasted people's time as something is going on. Your kidneys are distended and your not emptying your bladder. Your kidneys are too important.


  • Hi, I just got my appointment through for a renal nuclear medicine scan DMSA which will tell me how my kidney is functioning. I'm terrified of losing my kidney as I'm a renal nurse who does dialysis so know what it all involves. I know I have 2 but its scary how easy it was for this one to have problems.

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