Leakage after Prostate Cancer surgery: Concerned about travel and pads

@surftohealth88
Hi,
Did your husband joined pelvic floor physical therapy sessions or did he do anything else ?
I am using 4-5 pads everyday. My skin is sensitive, can't tolerate fabric of diapers so I have to use pads inside my underwear.
I am in 7 th week after the surgery. So far there is no improvement incontinence.
Thanks for your advice and support.

@eshan

My husband had one PT session before surgery and one after surgery but he did not find those essential, which does not mean that for others they do not offer great help.

He had easy time understanding muscle movements in pelvic floor and understood how to isolate and do correct Kegel immediately so he resorted on doing exercises at home. He started exercises 2 mos before surgery and continued them until he regained continence.

Honestly, he did very basic exercises, easy and boring stuff. Kegel's he did multiple times a day while doing other things - if he was sitting working at the computer or watching TV he would do them than, when he was taking shower in the morning and before sleep he would do them standing, if he was standing in line shopping he would do them there.

Kegel PLUS pelvic floor he did once a day after dinner - maybe 20 min total. He used online videos and books and phone app. "Easy Kegel" which was easy and fun.

His incontinence after catheter went out was moderate - about 75 ml in 24 hours and it was getting better and better every week with some big improvement jumps that were sudden and with no particular reason . For example - amount would be 35 to 40 ml a day for 2 weeks than literary over night it would be 20-25 ml a day, than that would stay for a week or 2 and than it went suddenly to 10-15 ml and so forth. The improvement is steady though , up and down but steady toward going down in amount.

I would strongly suggest that you buy small digital scale ( on Amazon, about $16) and place it on bathroom counter and start measuring exact amount in grams and record every pad. Weight pad before use and after use and the difference in weight is amount of urine (1 gram = 1 milliliter). That way you will clearly see a trend. Also, that will help your doctor know exact amount that you leak - pads are not good measuring method since one person can change pads more often than the other regardless of the amount of urine. I never understood doctors who ask : "how many pads", that is ridiculous IMHO.

Wishing you the best of luck and try to be patient with yourself < 3. Everybody is different and needs different amount of time to recover. In the meantime avoid alcohol, coffee and other caffeinated drinks, spicy food and drinking huge amount of any liquid all at once. No heavy lifting either !

Please feel free to ask if you have additional questions .

@surftohealth88

Thanks for writing this email in detail. It gives me some encouragement that light is at the end of tunnel.

Don’t be surprised about long term urgency incontinence and sudden urgency.
Do your Kegels at least twice a day. If you have a lot of urine each time, use a #5 or 6 pad in your underwear or use a pull up.
When you feel an urgency, get to a bathroom quickly. When your urine stream stops, do a Valsalva maneuver to eliminate any residual urine in your bladder.
BTW, you will notice that when you stand up after sitting or laying down, you will get urgency because the urine in the bladder will quickly gravitate onto the bladder trigone.
There are other tricks that I will not go into at this time.
Dr B

This is my 1st post although I have been reading comments on this site for months. I am 75 and had my robotic surgery at Mayo last September. The info that the doctors give you concerning post surgery is correct as well as what the many members on this site have said. It takes TIME and dedication to doing Kegel's to achieve continence. In my case the 1st month+ after surgery was tough, diapers and numerous pads. It progressively got better and after 4 months I was down to 1 pad a day and none at all at night (gravity, I guess). At the end of month 5, we travelled to New Zealand and Australia for a month returning just days ago. Everything went well except I needed many bathroom breaks on the airplane and during the land trips. I think the break in a home routine as well as the time (6 months) finished the job as I am now almost 100% back to normal. It is a slow process and most guys want a quick fix to things. Good luck in your journey.

Thank you Captain Brent for your post.
This is my 7 th week after the surgery. So far there is not much improvement. I use about 5 pads per day. It is really frustrating to sit home. I do kegels all day long. I am hoping to get better as time passes.
Thanks for sharing your experience.

Stay strong! Two and a half years post RP I am mostly dry except for the gym. And a medium pad works.

If you can find and afford one, please find a Dr of PT that specializes in treating men post RP. They do exist in every American city. Recovery for me was far more than Kegels.

Next diet. For me sugar and caffeine caused increased leakage. To the gentleman who noted to weigh your pads and journal the difference. Do that, its important to see what's going on.

Stay hydrated. Lack of water causes your urine to be more concentrated and this irritates the bladder.

Remember, today you are alive and with the grace of God on the road to a healthy life.

@eshan I understand completely! I am 5 months post prostatectomy. I still have leakage but a lot better off than at first. T take pelvic floor physical therapy which helps a lot!
My “ secret weapon” for times I travel or have to be in public is an “ external catheter “ which you can buy on Amazon. It fits like a condom with a tube and strap on leg bag to collect leakage. It is a life savor when you have situations you want to be sure there are no accidents!
It is so good you may be tempted to wear it all the time. It don’t! It’s good for special times but tents to inhibit leakage improvement since you will not have a normal urge to “ hold it” since the flow is continuous. I were mine once or twice a week for events or special occasions. Hope this helps!

@eshan Have you spoken to your urologist about a AUS (artificial urinary sphincter) implant? I got one 14 months ago and couldn’t be happier.

Hi Jim,
I have an appointment with my urologist on April 8.
I will talk to him about AUS.
Thanks for the suggestion.