Chronic urinary retention - anyone had this?

Have had repeated urine infections and constipation for a very long time, gradually got worse at about age 17 to the point I can hardly pee at all and if I do it is only a small amount. Had a normal cystoscopy w/urethral dilitation in October, forty plus normal urine tests etc, normal bloods for kidneys, normal abdominal ultrasounds. Was rushed to A&E on Tuesday with acute retention - hadn't peed in 22 hours. Catheterised, passed 1ltr within about 5 minutes, and kept in until 4pm on Thursday - catheter taken out on Wednesday evening after which I managed to pee sort of normally but not totally - I can go, I go enough to colour the loo water in the morning, but during the day I am only going tiny bits (about 40ml) every two/three hours.

Going for a number 2 every hour or so, but again only small amounts - had to use a glycerin suppository yesterday to get things going.

Have now seen two consultant urologists, plus up to eight different doctors in hospital, plus two gynaecologists. They are thinking it is a side effect of IBS or some kind of muscular problem, maybe to do with dyspraxia. I have been told as well it could be my medication so have been advised to start withdrawing from it (escitalopram) so am now taking 5mg as opposed to 10mg.

I'm no longer sure what to do, I am drinking about 2 litres a day and it's just making no difference. I am only peeing about 500ml a day if that.

Have bought some cystitis relief but I don't have any burning pain or abnormal frequency, just a bit of a sore tummy. If I am quite honest I no longer feel the need to pee - I have to force myself to go every 2/3 hours and have to push down to go.

Nurses told me to take a book/magazine into the loo with me but that makes no difference - at the worst I have sat for forty minutes with nothing happening..

What do I do next? GP surgery can't see me for weeks and don't know what to do, hospital are dithering over doing another dilitation under anaesthetic. Noone has ever diagnosed me with anything - I have basically had to do it myself through google, have come up with underactive bladder and found a drug that apparently will help - is it worth phoning my doctor and asking if I can at least try the drug? I don't want another anaesthetic if I can help it!

Anybody else had the same, anyone got any advice on what to do? Am sick of living my life worrying about peeing!

A good example is you know after you've orgasmed, it's nigh on impossible to pee? I have that ALL the time..

(edited 12 years ago)

Reply 1

almasy

I can name at least 4-5 different cancers that could be causing it, the fact that nobody you've seen has had that checked despite finding none of the more likely causes is pathetic, and to think i pay tax money for that...

any drugs you're taking, stop now cause they could be a cause.
and eat healthily, if that's not fixed the problem then PANIC.

Reply 2

Mr. Tizzy XII

To be honest, if "two consultant urologists, plus up to eight different doctors in hospital, plus two gynaecologists" can not give you the proper advice, I don't think anyone on TSR will be able to (See almasy's post).

Taking advice from anywhere other than a professional source should be done so with due consideration, and I wouldn't really recommend it. :unsure:

Reply 3

InArduisFouette

have you had urodynamics etc ? while a cystoscopy and urethral dilation have shown that the bladder wall is reasonable and that there is no urethral cause for poor flow - you really need a proper urodynamics assessment

has anyone suggested intermittant catheters to ensure that you bladder is draining fully ?

have you had a USS of your kidneys for hydronephrosis? as this is common in people with neuropathic bladder from neurological problems - which while there may not be a neuro cause for your problems the symptomology sounds similar

despite other posters positing theories about Cancers, that is unlikely vs the effects of continued poor drainage leading to the bladder becoming stretched and having reduced tone - also the cyctoscopy would have shown anything invading the bladder or a bladder Primary ...

the constipation will not help as constipation is a regular cause of acute urinary retention ...

(edited 12 years ago)

Reply 4

InArduisFouette

Original post by Mr. Tizzy XII

occasionally health advice on TSR can be useful there are a number of practicing health professionals who post on TSR including myself and people like Renal, Subcutaneous or Helenia (among others) there are also some reasonably sensible med students who realise the limitations of giving advice over the internet.

people who jump to a conclusion or start suggesting definite courses of treatment are the ones to avoid ...

Neuro-urology is a specialised area of practice with a limited number of Experienced Consultants who are mainly based in a limited number of trusts ( those with SIUs or other neuro rehab facilities),

Reply 5

Mr. Tizzy XII

Original post by zippyRN

Point well taken Zippy, just wanted to try and warn against taking random advice. :yy:

Reply 6

thegodofgod

Original post by almasy

I pray to a nonexistent god that you never work in any area of health care, not even as a first-aider in an office.

Your 'advice' is abysmal.

Reply 7

daisydaffodil

Original post by almasy

Thanks for that Almasy - that made me feel good...

I am holding onto the fact though that the consultants I have seen specialise in bladder and urinary cancers though and I am praying that they would know what to look for.

I have had a full ultrasound as well during which my pancreas, stomach, aorta, bowels, bladder, kidney, uterus, ovaries were all fully checked out and pictures were taken during the uss. They said it was all normal and nothing weird going on. I've also had a lot of abdominal exams with people listening to my tummy and pushing it, surely to goodness they would know by now - especially since things have been going on for years. I've also - as I said - had lots of urine tests and kidney tests.

And my symptoms do come and go - for the last twenty four hours I haven't experiend *as* much difficulty peeing and have been passing a bit more.

Am currently withdrawing medication but will take a while, due to my mental health they aren't keen on me going without at least some SSRI in my system..

Anyway -

I was supposed to be getting urodynamics yes, but somewhere in the last year or so it seems to have been forgotten. So I wonder if I should ask about that one again..

Intermittent self catheterising, noone's ever spoken to me about - the only thing I was told I'd get if I failed to pass urine at all would be a foley catheter for two weeks.

I'm dithering over ringing my consultant's secretary in the morning and asking if I can see her to discuss everything, doctors seem to be very good at "You're the patient, I'm the doctor and I'll tell you what to do.." .. Ideally I think they should do urodynamics/cystogram (which was planned anyway but then forgotten) and a flexi cystoscopy. I could do without another dilation due to the pain after and recovery times..

Thank you for the good advice though (and the reassurance from the rest of you that I probably don't have the dreaded C :P) xxxx

Reply 8

InArduisFouette

daisy persue the urodynamics as a matter of urgency ( boom boom !)

ISC might be an option if you are making enough urine but the the bladder isn't emptying fully it;s considerably less invasive and less likely to cause problems than having an indwelling catheter and the current generation of female length ISC catheters are mega discreet ( one of the speedicath ones comes in a little case like a lipstick)

Reply 9

Kage

Woh, that sounds bad. I would certainly change medication or stop it completley to check if symptoms slowly go.

I find it odd how you can go so long without going at all. If the bladder is filling up, surely you would feel it? If its not filling up, it seems like your body is retaining fluid rather than letting it out as it should into the bladder for you to get rid of.

It must have hurt surely when you were at the hospital, and managed to get rid of 1 litre from your bladder in that short time?

Either way, something is definitely not right and it saddens me no doctor can tell you anything.