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The Simon Foundation for Continence

Need your advice

As the admin for this community, I would like to know what kind of information or topics would be helpful. I don't want to post info that is of no value to anyone. Please send me your thoughts on things you'd like to know more about, how to do's, where to get a product,news, or whatever is relevant to you. You can post your thoughts or message me. And I will be sure to follow-up on your recommendations and advice. And please be sure to post your questions and concerns so that this growing community can respond. I know there's lots of great advice and experience among us. Thank you!!!

4 Replies

I wonder whether catheters would be a topic of interest. I understand that there are various kinds - permanent or temporary, urethral or suprapubic. Perhaps they would reduce some of the issues associated with diapers for some people? - by reducing the amount of urine to be soaked up. Experiences of the various kinds of catheter might be of interest?

Catheters have often been accused of causing urinary tract infections, but are they worse than wet diapers? Perhaps UTIs would be another topic to discuss?


Excellent suggestions!! Thank you.


I had my 6 month exam after my combined prostatectomy and diverticulotomy. My psa continues to be undetectable....03. I still, however, continue to experience incontinence. At times it's only small dribbles, but at other times major floodings. Sometimes I can make it to a restroom if one is nearby, other times not. I have also days that I'm dry. As a result, I'm afraid to go without wearing a diaper of some kind. I would like to know if unpredictable incontinence is normal? Will it be somewhat of a permanent issue since I had poor control before my surgery? I just wish I would know one way or the other. This may sound strange, but I almost wish it was permanent so I could get on with life without having to think about whether or not I should wear a diaper or take my chances. I'm not receptive to an artificial sphincter or bladder sling. I don't see that form of management as any more discreet than a diaper, and more of a chance for something to go wrong. In other words, I have had enough with the poking around "down under". Thanks for hearing my concerns.


I am assuming that you are letting your surgeon know about the continued leaks (small and large). If not, you should!

And I am wondering if the surgeon has recommended any type of pelvic floor muscle exercises with a physiotherapist to help. Please ask about this if you have not discussed this option.

From my reading on the topic, I have often seen that it may take up to 12 months before you know if things are going to stop, or if there may be some permanent leaking. But again, this is really something to discuss with your surgeon and to let him/her know of any kinds of leakage that you are having. At the 12 month period, you may want to discuss other interventions that might be of help to you, depending on what you are experiencing at that time and why (these may be a bulking agent, Botox, medication, etc.). I understand not wanting another major surgery.

In the meantime, if you are like me (as I never know when I will have an explosive sneeze that may cause a leak), when I go out, I always have something protective on. That way, I just don't have to worry, and can feel confident.

I hope others in the community will offer their ideas on this as well.


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