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Total incontinence 4 months after RARP. Is there a chance of recovering?

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Posted 5/1/2012 1:45 PM (GMT 0)

My husband is totally incontinent 4 months after RARP (catheter was in for 2 months). He is using 10 - 15 pads a day and 2 at night. He tells me he is doing Kegels, but I have booked him sessions with a specialist physio to try and help. I also read with interest the very old post about walking round with a cup (which I will get him to try too).

We know that it is going to be a long haul and he is an incredibly patient and self-controlled man, but it is starting to get to him. So any encouragement that there might be light at the end of the tunnel from other long-term incontinents might help.

Is there a chance of recovery before we go down the next route?

How long should we wait before thinking about the next steps (injections/sling/AUS)? Or at least starting preliminary enquiries to find the best specialist reconstructive surgeons in London?

Any advice would be appreciated.

Thanks.

Posted 5/1/2012 1:52 PM (GMT 0)
he was downgraded from a gleason 8 to a gleason 6 after the surgery? I'm not sure I've ever read of such a downgrade here before.

I think rehab with incontinence can take up to a year or so.
Posted 5/1/2012 2:33 PM (GMT 0)
I was in the 8+ pads and a depends pant per day for well over three months. It was months 4 and 5 before I had any significant improvement, and then it was unpredictable (8 pads one day, 3 the next, then a flood overnight and 8 the next).

The physical therapy suggestion is a good one. What we do as a kegel and what a kegel really is can be two very different things. Done wrong, they don't accomplish anything.

My uro advised that we would not discuss corrective surgery until at least one year out. By then I was fairly stable at 1-3 pads a day, and felt like I could deal with that.

Posted 5/1/2012 3:01 PM (GMT 0)
janem123, been there myself, but finally turned the corner at the 4 month mark. Still have an occasional accident (had one last night grocery shopping) and have experienced one setback with a few days of dripping, but dried out again and things are improving day-by-day. Hope your husband is doing keggle exercises. They helped me. Every time I'd drive during the day I would do a few sets while driving. 10 seconds holding, 10 seconds relaxed, set of 10 but no more than 4 sets a day. Once there's improvement, 10" leg lifts also helped.

Folks that never had an incontenence problem have no idea what a quality of life issue it is. Going out in public was intimidating. Extra pads were carried in pockets, small camera bag, and always a few in the glove box. Sex was totally out of the question while I was leaking, and the thought of oral made me and sweetie ill. But once the dripping stopped she jumped on the ED (pun intended). things improved over the past few months and I wish the same for your husband, best regards, hj
Posted 5/2/2012 1:48 AM (GMT 0)
Bump..This somehow came up as "No Subject..."
Posted 5/2/2012 2:14 AM (GMT 0)
so sorry to hear about your husbands situation, that is a pretty severe level of incontinence with that many pads per day. hope you can find the help you need. it is still early on, and hopefully, like other men in his condition, things will start to turn around at some point in the near future. if not, you do have the other options to consider, like slings, etc. there are several men here with them, with great sucess, hopefully they will chime in and give you some advice.

david in S.C.
Posted 5/2/2012 2:58 AM (GMT 0)
Welcome to HW. Incontinence is no picnic, but odds are it will get better. Somehow you and your husband have to keep the main thing the main thing, that is beating PC.

It took me 8 months to declare myself continent. Even then, continence is not like it used to be. Certain beverages, medications, coughs, sneezes, or awkward stances can cause occasional leaks. Actually I have gone back to wearing a pad to stop the potential for a leak at the wrong time. It allows me to feel morecat ease.

I think your husband will find fairly rapid steps to continence. In a few days, he could go from 8 pads to 4 pads. Then he may go back to 6 pads, and a few days later go to 3 pads. It's kind of like that for many guys.

Just try not to be discouraged. Being alive each day, not having PC is a worthy trade for me to have a drip or two.
Posted 5/2/2012 3:36 AM (GMT 0)
I to had the RRP and the UO told me it would take much longer to regain continence simply because the surgery was more complicated and more damage done. I remember not making any progress for the first three months, and it took up to eight months to really start gaining control. The URO that works with the U..O. said he would recommend surgery to put the implant in to control when I urinated and I said absolutely not. I will gladly wait for a few more months and fortunately, I waited and did kegels faithfully. It has been over a year from surgery and if I go into a coughing spell I have to go change my pants. I should wear a pad throughout the day, but I don't and so needless to say, I have to use alot of chlorine on my underwear.

Be patient, hopefully six more months will bring dramatic progress to your husband. It is so humiliating to loose both continence and find out you have total ED. It is so hard for a man to come to grips. I still am trying to deal with it. The continence part, when I have wet my pants, I just laugh and tell people around me that I am recovering from cancer surgery and they become so sympathteic. The ED has a greater magnitude of frustration and I don't know if surgery will be the way to correct that. If I did have surgery, I would have them do both the urinary control and the erection capability in and make be bionic.
Posted 5/2/2012 3:58 AM (GMT 0)
With a catheter in for 58 days it would be a while before your bladder remembers to empty when you tell it to!  For all of those 58 days you didn't have to do anything to pee.  I was suppose to have my catheter in for 7-10 days and ended up having it in for a month due to strictures at the tip of my penis due to the irritation of that darn "garden hose."   Hang in there, it is way to early to think about slings, etc.  Time to really concentrate on the kegels and note that improvement will come--slow yes, but will come.  I am finally down to 3-4 pads a day and wear one at night with only minor leakage.   My thoughts are that I can put up with this as I hopefully dodged a bullet.   Best wishes and we are all with you in your recovery.
Posted 5/2/2012 10:47 AM (GMT 0)
I was 54 days on the catheter, and going through 6-8 pads per day. I'm now just past 5 months post surgery and am down to 1 pad in 24 hrs. I measure my improvement in weeks, not days.
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