Well, my hubbie's RARP in Chicago on 5/13 went well as far as no surgical complications (I was worried about clots), the biopsy results confirmed the Gleason 4+3 dx but did NOT 'upgrade' it, and all the tissue PLUS lymph nodes were CLEAR thank heavens!!
But he is discouraged about the leakage issues 3 wks out although he knows it takes time, etc. He has begun his PT but is having to change his Depends 3x a night (so total 4) to avoid overflowing. Some DAYS he CAN PEE NORMALLY i.e. standing and can wear regular briefs + pads, but others he's not able to get much out and leaks copiously and is discouraged. [When the catheter was removed, the nurse injected fluid in his bladder, I guess, and it ALL came out from his 'noodle' as I call it :)]
I would appreciate very, very much hearing your stories of how this all went for you, whether it's better or worse than the experience my hubby is having.
I'm sure it's important to note he was in retention and on a Foley for months before the surgery; his PT does say the muscles are weak but NOT DEAD!!
Thanks in advance,
Jeri and Steve
Written by
AliceinW57
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Doing lots and lots of Kegel Exercises helped me over come leakage and it slowly faded away. I was off depends in a few weeks. Everyone is different and IMO its key to focus, push and have a desire to win back all previous capabilities was totally key. Exercising everyday and pushing slightly beyond what I could do previously was helpful.
Don't give in or up, fight your way back. Own and rule your recovery!
Hi Jeri, I am sorry Steve is having trouble with incontinence but three weeks is nothing. My RP was in 2018 and when the Foley was removed I leaked like Niagara Falls. I could not pinch it off at all, it just flowed out. My Uro's PT gave me great information about how to do the kegels; I never worked directly with a PT but I know it is very helpful for many guys. I did my kegels diligently, maybe 30% more than I was told to do. I was much better after about three weeks but still used pads or briefs. I continued to improve but I remember, sometimes it was one step up and one step back. It is hard to remember exactly but I was pretty continent at the 7-8 week mark. I was just using a paper towel to catch the occasional drip. I continued my kegels daily and think I was fully continent at the 10-12 week mark. I still do a set of kegels occasionally.
Try to keep Steve from getting too down or frustrated. I'm pretty sure his muscles got very weak from using the foley for months prior to surgery. Any muscle will atrophy pretty quickly with complete inactivity. I think it takes some real time and tons of exercising to build the muscles back up. I'm glad he's working with a PT which I believe is very helpful. Look for those green shoots and ignore the backward steps. Again, three weeks is nothing.
Cystography (X-raying) is a more secure way of testing the tightness of anastomosis, yet, the test with the fluid injection that nurse did, is better than remove and pray. A way to monitor his state of healing is, when he does pee, do it into some container and measure the volume. Volume increase day by day or weekly will be indicative of improvement.
I had np with leakage after 4 weeks post RP however I would assume he's a bit of a special case due to his issues pre-surgery and his age. For me, the progression to being dry was NOT linear. Don't look for gradual improvement as gains seem to come in leaps and bounds. Also, he's VERY early in the process so don't let him get frustrated!
One issue I did have was bladder retraining. I wanted to void constantly. I kept a log and held it longer and longer each time and after about a month I was back to voiding like I did my 30's.
Glad to hear about the positive pathology too!! Good luck to ya's and keep up with the Kegels!
Hi - leakage following surgery is not unusual. Your husband’s doctor should have told him that. And his PT is spot on, leakage will subside in the next few weeks. He should concentrate on pelvic floor exercises, and make sure he is seeing a pelvic floor Specialist. That is huge. But tell him to be patient. He’ll gradually move from Depends to a smaller pad, and then finally a shield. Tell him to maintain a positive attitude, do his daily Kegels and get on a PT pelvic floor specific program. Good luck!
Glad to hear that your husband is doing well. I had radical prostate surgery in 2013. In addition to my prostate, they had to remove several nerves and some muscle. All that has left me with mild incontinence. I went through PT and built up my muscle but still experience incontinence. In addition to a pad, I also use a penis clamp. Mine is the Wiesner clamp but there are others. Hopefully his PT and Kegel exercises will improve his situation. Give him my best
RP in September 2018. It took me 3-4 months to get reasonable urinary continence. My brother had had a RP several years before, and he told me it only took him a couple of weeks, so naturally I was scared it wouldn't happen for me--but it did.
Everyone is different--give it time, and lean on the docs and PTs. I did my kegels early on, but got discouraged and gave up. Not sure if it helped--didn't seem to, but again everyone's different.
A few things stand out to me with these comments. Everyone is different, patience, and kegels, kegels, kegels. My RP was in 2019, so just reached 5 year mark. I lack complete continence to this day. Some days are worse than others, but overall I would say that most of my leakage occurs with the typical "stress incontinence" factors, like lifting, squatting , sometimes going up stairs, and most annoying (sorry to be so graphic), straining even slightly to pass gas. I still wear a very thin pad, called TENA purchased on Amazon...there are different thicknesses depending upon need. These are so much more comfortable than any others I tried, and so thin you really don't notice. So, my advice, like the others, try not to despair, be patient, and do your kegels.
Yeah. Everyone is different. I was dry at night, laying down, but soaked the diapers out during the day, for a month. Then soaked the pads out during the day for a few months. Minor stress incontinence now and then now.
The way it works is this: A male has three urinary sphincters. That's why we get annoyed at you ladies, who only have one, on road trips. Well, two of ours are in the prostate, and are lost, and the one that remains is "voluntary" (vs the other two were involuntary), and really lazy after not really being needed for decades. The brain, however, does not like to be "wet", but it has to learn when, how, etc to tighten this sphincter. So, for everyday stuff, the brain learns fairly quickly; and then when it encounters something new a few months into it, it is surprised and leaks; but it learns.
It's kind of like learning to walk. So many different muscles must learn to do their part; and do it without the you consciously controlling all these muscles. So, even tho this sphincter is voluntary, the brain figures it out, and just does what's needed in the background w/o conscious input. Tho it gets surprised every now and then.
There are also certain things that will cause leakage no matter what. Sitting on a hard surface just the right way seems to short-circuit the lines of communication. (Lotta friends have told me the same thing on this. So, it's anatomical.)
I think Kegels probably help. I do just a few a day, but do like 40 seconds. The theory I read is you want to thicken these muscles to support the sphincter, bladder, etc. And, anaerobic "weight lifting" builds muscle. It works for me, tho is non conventional.
One thing I've learned reading this forum and talking to people is there is no "standard outcome" for any of these things. The surgeons of course will tell you otherwise.....
Find a Physical Therapist who specializes in bladder control/incontinence.
Early on with them - ask them about electronic stimulation. There are very expensive machines that use a rectal probe to twitch the muscles in the pelvis. This can be used every evening while sitting around watching TV. There are also close to identical machines and probes on Amazon and AliExpress for a very small fraction of the cost of the "medical grade" ones - these are intended for sexual stimulation. They work equally as well for the same purpose. These automate kegals for you. No effort is needed on his part, they'll just twitch away while he watches TV (reads a book, whatever.)
That helped me go from a Depends maxi/day to a mini-mini per day that just gets slightly damp from spurts when I change position rapidly. I now need nothing at night - I can hold it for 7-8 hours in bed.
Find the PT, and go from there.. good luck! My lack of control was caused by an over-zealous urologist doing a "green laser" turps on me for lack of flow. Went from lack to excess in one afternoon. He's been fired.
Just like others say, have patience and keep up with exercises recommended by Physical Therapist. Been 3 months post surgery for me and still only slow return to continence. The penile clamp has helped with control while back to work as requires fewer pad changes. I also am learning to be patient and do more exercises.
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