Rrice

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I’m new to this website. Age 71, otherwise active, healthy workout nut; diagnosed with prostate cancer in November; radical prostatectomy Dec 7. I had a huge prostate, so my surgery was more difficult than most, and recovery has been much slower than expected. Today (almost 5 weeks out), I have almost no control over my urination and intermittent pain near the tip of my penis, apparently aggravated by Kegels and by pinching my penis to make it to the toilet. Using 8-12 pull-up diapers per day. Would love to hear any suggestions for easing the pain while strengthening my pelvic floor. Thanks!

 

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Welcome Rrice. i am 66 years old, and had my RP last May. I cant speak to the pain in ur penis, but the lack of bladder control is something most of us on this forum have experienced. I had a month of no control after the catheter was removed, so depending on when yours was removed, you may only be 3 weeks out. I have said this before, you cant measure your progress in days, but in weeks and months. It will be glacier slow, but it will get better. I am currently at 1-2 Tena pads a day, but I was in the same position as you to begin with. It can be depressing, but use this forum as much as yu need to. There will be a lot of good advice and experience from this crew. Lean on us, we will help you get thru this. Keep up with your Kegels. Good Luck my friend.

 

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I'm 63, had my RP in August. I am just seeing an improvement in the last couple of weeks where I've dropped pad usage from 20-25 per day to 6-8 per day. I have always been 100% dry at night and mostly dry when sitting. You'll find that standing or walking or heavy activity the leakage is big. Like I said, it has been about 4 1/2 months until I've seen a noticable improvement when standing/walking.

 

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Rrice.
You are very early in your journey to recovery. Everything you have described sounds normal. I underwent RP in August of last year. Like you mine was a little bit complicated due to my “narrow and deep” pelvis per my surgeon. I was totally incontinent and didn’t see much improvement until 3-4 months out. The pain in the penis is frequently referred pain from deeper in the pelvic floor and can be aggravated with kegals and other things. The tip of the penis especially can be irritated from the catheter and pinching it may be preventing it from healing. I would suggest keeping the diaper on until you are sitting on or standing over the toilet.
The pelvic nerves take a long time to recover and it will try your patience.
Continue with the pelvic floor exercises, avoid alcohol, caffeine and other bladder irritants and go for walks.
I was very frustrated with my progress and it wasn’t until December that I saw real improvement.
I’m still not where I want to be but the progress is coming. November I was leaking less at night, December had a few nights each week dry in the am. Now I’m dry each morning and if seated. Still leaking quite a bit when standing but nothing like 2 months ago. I’m still wearing a diaper but thinking about trying to go to pads soon. The recovery is slow and not totally linear. 3 steps forward and then one step backward. Measure your progress in months or weeks not days. Congratulate yourself on taking an aggressive approach to getting cancer free and hang in there!
Good Luck!
Boomer

 

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I am coming up to my surgery anniversary the 18th of Jan. And it was a long road to where I am now. I started seeing gradual improvement in my first 4 months. But it was a very very depressing time....but do not give up!!Then great improvement to just wearing one depends a day the next 4 months. Then I slacked off the kegals and started to slide back down that hill to my 10th month. Meaning two depends a day. Started my kegals again and steady improvement to where it's usually one depends every 24 hrs. I could probably make it two days....but I like to be clean. Best advice is simple....expect the worst and hope for the best.But quit doing your kegals and you will only postpone your way back to health. And remember no matter what you read here....everyone is different. After a year now I am just living a Normal life leaking a bit, but I'm just used to it now and it no longer really bothers me. Good luck to you my friend. And keep doing your keggals and stay positive to yourself and your family. You will survive this battle too...believe me.

 

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I’m 74. Had my RP 9/12 (4 months out). Still leaking but some improvement, less at night, less in day time. Is use 2-3 pads daytime. Pull-ups (2)overnight now. Sitting to standing triggers leaks, as does sneezing and coughing. I’ve been doing kegels and a few other exercises given to me by my PT. If you haven’t done physical therapy, you should. Not only do they give you stuff to strengthen your pelvic floor, but tips on control when you stand, etc. You're very early in the recovery still. As you can see here, it can take awhile.

 

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A heartfelt thankyou to everyone who has responded. Sounds like I’m near the start of a marathon (that’s ok, I’ve run 14 of them)but if I stay the course there will be a finish line eventually. In the meanwhile, I’m not going to let the journey interfere with enjoying my second chance at the game of life!

 

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Everyone above basically said what I would have said. Surgery Sep 28 and currently 2 pads per day. Was using 6-7 moth after. Only thing I would add is walk. Think walking 2-3 miles day helped.

 

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Thanks Jimfrompa. Glad to hear walking helps. As mentioned, I was a runner and adding a few miles of walking is not a problem. Good luck with yours!

 

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I know this is not the forum for impotence, but what are you guys experiencing in that department? I am 4 1/2 months out from RP and asked my surgeon about getting an erection, and he prescribed 100mg of Viagra. He wants me to try half a tablet twice a week to see if that spurs any activity. I know it is not a priority right now, especially trying to get the leakage under control, but I don't want to let too many months pass, because I thought I read something where it's one of those things you lose it if you don't use it.

 

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That’s crazy mdoshen. I am dealing with same issue about 3 1/2 months post RP and had doctors appointment today. He said usually by now most people see improvement by now but try viagra and see if it works. Was hoping would be better by now but at least cancer free. Didn’t expect this at 57 years old. I was told post surgery my prostate was very big . Surgery took 1 1/2 hour longer than normal.

 

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Take a look at post comments in the following SEX! thread

Log In To Continue | National Association for Continence

forum.nafc.org

My doctor started me on daily cialis ( 5 or 10 mg ) the day the catheter was removed. I get the generic through GoodRX 10 mg 90 tablets for $40.

Think of it as a diet and exercise ==> While overcoming the incontinence is extremely important, you can not just have protein, we need veggies and carbs - all in moderation.

 

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Rrice, I can't add a lot to the advice others have given. Like many the first three months were very challenging. But things got a lot better after that but at 9 months I am not totally continent by any means. Today, for example, I got away with just one light shield. It was quite a sedentary day looking after my little grandson and I'm sure I would leaked more if I had been digging in the garden. Many say it can take a year or even 18 months. You will feel stressed dealing with the incontinence from time to time, but you will prevail. I wish you every success on your journey

 

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Rrice,
It's too early to say your incontinence will continue, but managing leakage at any stage can and should be addressed for obvious reasons. For nearby relief or a long lasting solution, I invite you to join other volunteers who are evaluating our external aid that impedes leakage day and night. We are patent pending at the moment (not yet for sale), but trying it and contributing with your feedback may enlighten you as to the management possibilities going forward. After five years or more, the design of our soft silicone sleeve aid is approaching what has always been our vision. (see my profile for a picture) There is no perfect solution for those of us who are incontinent to whatever degree. The answer lies in what compromises one makes to get through the day...or night. In our case, our soft flexible aid gives up a little in performance (perhaps 1 or 2 liners per day) for all day and often all night wear in comfort. If interested, pls send an email to amhelp@comcast.net so that I can forward info and instructions for your review. Best wishes, Fylee