urinary retention... what to do about it?

[ncbez]

I am 33 years old (female) and have been suffering urinary retention since childhood (I can't remember exactly what age it started).  I'm not aware of having had UTIs as a child, just difficulty urinating.  However, I suffered repeated cystitis/infections between my mid to late 20's.  It all "came to head" when I was 28, when I had an infection which spread to my right kidney. I had to go into hospital in an emergency, because I was unable to pass water for about 18 hours and was in terrible pain... I was catheterised and was admitted for about a week for a few tests, although they came to no conclusions. Since then (Nov. 98), and up until now, I have had to self catheterise.  In Jan 1999, I returned to hospital to have a small op "urethral dilatation" as an outpatient (which didn't help that much frankly), and following this, continued to see a urologist for about a year (for ultrasound scans of my bladder and kidneys every 3 months).  He then referred me to a uro-neurologist at another hospital who has been doing extensive research into urinary retention in women.  So, I therefore had a few more tests, which suggested I definitely have some abnormality in the urethra, that the sphincter muscle is too tight and that I have a very large bladder. Inspite of their "research", they didn't help me much.  They did not give me any cause, (apart from the fact that it might be congenital) and they only offered one solution, an operation to install a neuromodulator(?)... but it was established that I wasn't a priority because I only have partial retention, not total retention. The only other solution I was told was to continue self catheterising which is what I'm still doing. By the way, although I never really have a sense of urgency in the bladder/urethra like normal people do, I can still feel when my bladder is full.
Fortunately, I have recently changed my general doctor, and when I told him about all this, he was actually very concerned about the fact that I have been self catheterising for the last 4 or 5 years(almost every day), and that the specialists have not come up with any other solution.  He said it was a mistake to send me to a neurologist, and he is going to contact and re-refer me to the urologist for different tests (he said sth about urodynamics?). My doctor seemed to be convinced that there must be another solution, he also said that if I continue using catheters for the next 20 years or so, and don't find another solution to this problem, I will eventually have back or kidney trouble.  As for myself, I'm also not keen about the prospect of having to self catheterise for the rest of my life!

Considering I have had this problem since childhood, is it possible there may be some progressive damage to the kidneys? If so, is there any way of finding out? Any tests?
I would also appreciate any help and advice about my condition, and would be grateful for any suggestions... anything else I could do, or have done...?  Many thanks, Nadia.

[Kevin Pho, MD]

I would agree that urodynamic testing would be helpful.  They can include the following tests:

- Cystometry (or cystometrogram) evaluates bladder function by measuring pressure and volume of fluid in the bladder during filling, storage, and voiding.
- Uroflowmetry measures the rate of urine flow.
- Urethral pressure profile tests urethral function.
- Leak point pressure determines the bladder or abdominal pressure when leakage occurs due to increased abdominal pressure (Valsalva or cough) to assess urethral resistance.

The purpose of urodynamic testing is to aid in understanding physiologic mechanisms of lower urinary tract dysfunction, thereby improving the accuracy of diagnosis and facilitating targeted treatment.

Regarding damage to the kidneys - if you have been successfully self-catheterizing, this should be minimal.  To confirm this, periodotic creatinine levels can be obtained.  

The specific treatments for neurogenic bladder would be dependent on the results of the urodynamic testing.  Options may include surgery or a suprapubic catheter if self-catheterization is less of an option.  

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Thanks,
Kevin, M.D.

Bibliography:
Flesh.  Urodynamics.  UptoDate, 2004.

[Mina985]

A related discussion, Urinary retention was started.