Reason for my continued incontinence: "Stricture"

Hi Jefnef,

We're all keeping our fingers crossed, and wishing you good luck...

Glen

Hi Jefnef,

I'm watching your progress with interest, as I may end up where you are.

I had a cystoscopy 10 days ago, which confirmed narrowing of the bladder neck. The urologist dilated it, knowing that it would be a temporary measure. If it made a difference to my continence, he said, I could then have the surgery to make it permanent. He said my continence may go backwards for a while, but that would also be temporary.

At my request, he measured the distance between the bladder neck join and the sphincter. It was nearly an inch, which is too far away for the stricture to have any impact on the sphincter, he said. I was concerned that during the operation they may have made the join too close to the sphincter, but I am now satisfied on that point.

He said my sphincter was healthy, not the typical "stovepipe" sphincter of an incontinent person. It was grabbing the scope strongly as he wriggled it around - "not the sphincter of a 20 year old, but certainly strong enough to provide continence", he said. "So why isn't it working", I asked? He does not know.

I asked him whether I had a shorter than normal sphincter, having read of a Sloan Kettering study that linked the pre-prostatectomy length of the sphincter to the time taken to become continent (the longer the better). He said mine was a bit shorter than normal, consistent with my lean build, since the length of the sphincter is the thickness of the pelvic floor muscle at that point.

After the scope and dilation, I passed urine a couple of times with some blood, then some 2 hours later, I had an episode of urinary retention which required a return to the hospital. By the time my urologist got to me some 4 hours later, my bladder was bursting with 440 mls of urine, equivalent to my pre-surgery bladder capacity. The interesting thing is that both he and I were expecting to see a blood clot come out when the catheter was inserted, but the urine was totally free of blood. In the absence of any mechanical blockage of the bladder such as a blood clot, the only conclusion according to my urologist was that my sphincter locked closed and very competently held back a bladder full of urine. This proved to him that my incontinence was not due to lack of sphincter strength, but rather an inability to harness that strength effectively.

I had a catheter in for 48 hours, and following removal I had a couple of days of slightly better control (ie., I could get to the toilet after sitting for a while with less loss into the pad). The last 4 days however have been worse than normal, with virtually no ability to hold anything after getting up from the chair, and even filling my pad through the night (11 pads yesterday). My flow is demonstrably improved though.

So now nearly 11 months post surgery, why won't my clearly strong sphincter stay shut in it's default position? Two possibilites come to mind:

(a) Have the nerves have not fully recovered and the signals to and from the brain are disrupted? I asked the urologist if perhaps excessive nerve damage had occurred during the surgery and he said it was unlikely because the nerves to the sphincter were mostly below it.

(b) Is it a hormonal deficiency of some form, depriving the muscle of the necessary elements to fire correctly? If it is, then why is it only this muscle and not other muscles in my body which are affected?

Has anyone got any ideas? What about acupuncture - anyone known of anybody who has successfully recovered from post-prostatectomy incontinence through the use of acupuncture or similar?

Berb

Jefnef. Hope you're doing better and that the pain is easing up. Glad your stream is better, and I'm keeping fingers and toes crossed that your leaking improves greatly! Let us know how you do.

Hey Berb, Just wondering... How many pads a day are you using now? Are those full pads or are you counting any pad used? I use the Depends Underguards. I keep a pocket calendar with me to keep track of my pad usage. When I change I will put a . if the pad is only about half used. I put a / if it is a full pad. On occasion if I push one too far and completely fill it to the point of leaking out I will charge myself with a /.
This way I can actually see if my count goes up or down. It does also depend on how much I drink and how active I am. I currently use about 4 pads a day.

Good Luck.... KW

Hello everybody,

And Berb, I hope your condition improves. Don't know if we are in the same boat physiologically or not, but we're definitely suffering some of the same symptoms.

I got the Catheter out today, what a relief. Unfortunately, my continence condition seems unchanged, perhaps worse, but it's only been a few hours since the procedure. I'm praying for some improvement. I'll go back for another scope in one week. I'm actually pretty depressed right now, having been hoping for some significant improvement. But I am dripping when I am standing... just like before.

"Standing" by...

Thanks for the support and the kind words, puget.

I am trying to think positive. Perhaps it just needs a few days to settle down. I got up this morning and worked in the yard, something I haven't done in a while. Nice morning, chased the dogs around, enjoyed myself, but I soaked a pad in 45 minutes. So I am not expecting a miracle-- which is what it will feel like if I ever stop dripping.

I had my one week post cath follow up today. The surgeon scoped me again and said that my stricture is gone and healing well.
He said that he expects my continence to continue to improve for the next week or two.
However, then he prescribed a "Cunningham Clamp" for me. He asked that I wear the clamp when I am standing or walking around so my bladder has a chance to fill up. He said to urinate every few hours and to stop and start my stream several times while urinating.

?

Is this really effective therapy? I really felt like when he prescribed the clamp that this was kind of like saying "Well, we have tried everything I know how to do, so if it still leaks, put a clamp on it!"

Right now I am using anywhere from 3-5 pads a day, depending on how much liquid I take in and how much I am standing or walking around vs sitting or lying down. This is maybe one or two pads less than before the surgery. I'm doing my best to keep a positive attitude about this, but more and more it looks like I am becoming one of those statistical outliers that never regain complete continence.

Does anyone have any experience with this "Cunningham Clamp" therapy? I don't find it very comfortable, so I am really hoping there's a tangible benefit there.
Thank you for sharing.

http://www.renewintimacy.org/pdfs/UIbookSample.pdf

Clamps must be released every 2–4 hours to empty the bladder.  Allowing urine to
remain in the bladder for prolonged periods increases the risk of urinary tract infections.   

  Do not use a clamp in conjunction with other incontinence devices (except absorbent
pads), with indwelling catheters, or with implanted penile prostheses.   

  Contact your doctor immediately if any swelling, bruising, discoloration (change in
color), or sores develop on the penis while using any clamp.  In many cases some simple
adjustments and additional practice using the clamp will alleviate the problem. 

  Do not use near open sores.  After sores are completely healed, the clamp may be used
again. 

  Patients with altered mental status should not be allowed to wear a clamp. 

  Do not hesitate to contact your physician if you have any concerns or questions about
using a clamp.

If a clamp is not properly positioned, secured too tightly, or left on too long it can cause
swelling, bruising, and ulceration (sores) on the penis.  If these signs are ignored, deep tissue
necrosis (destruction of the tissues inside the penis) may occur; this damage cannot be seen. 
Because of these potential complications, doctors and other health care professionals may be
hesitant to recommend clamps to their patients. 

Berb, to answer your question, Yes I am able to hold urine in my bladder. If I sit a while and some builds up I can retain most of it untill I go to the toilet. I seem to hold better when the bladder is almost full. I am thinking it engages the internal sphincter when the urine starts to build up. I am slowly being able to retain some while I am on my feet for long periods at work.
I am down to about 4 full pads a day. I change more often than that but that is only to keep from having a leak out at work.
My Second opinion gave me the info on the clamp, sling, and AUS. I did not even consider the clamp. Holding off untill my therapist tells me I am not making any more improvement in muscle tone before I give in to the sling or AUS.
Keep up the good work.
KW

Hello all, and Happy Holidays

I'm 2 months post bladder neck incision surgery now. I am still just as incontinent as I was after the prostatectomy unfortunately.

I contacted my local urologist a month ago and asked him if he would consult with me on the incontinence issue, and he basically refused to see me. Seems that he feels the incontinence issue is the responsibility of the surgeon and he just won't treat me for it. I've called Moffit Cancer center and left numerous voicemails for my surgeon, and faxed him twice asking for a referral to another urologist and requesting a call from him to discuss my condition. No return call. Very strange.

In any event, I would like to try some other treatments. Perhaps biofeedback, or really anything at this point.

Jefnef,

Sorry to hear of your continued incontinence.  I (and othes here) have been there and done all of that.  Male Sling is for mild incontinence and sounds as if yours is not mild.  Neither did I consider any surgery until I ran out of all other options.  Just had the AUS and had it activated yesterday.  Instead of drip, drip, drip, I am dry, dry, dry.  I am glad I had the sphincter installed.  Everyone has to make up his own mind. Hope and pray the best for you. 

Gene214

To Jefnef

PLEASE read my post of 8/20/2008 about your incontinence.  With the system I now use it is possible for me to be away from a bathromm fo as much as six hours.  No more wet padsto dispose of and no more adhesive stuff where it doesn't belong.  I was very incontinent and dicouraged but this has given me a new life.  Try it you will like it.

Jerry