Incontinence day 1

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@Wowjustwow

Please talk about your incontinence and feelings with all the medical staff to educate us men more. For your mental health. Know that this is a place to see others' experiences.

You are not crazy and what you are experiencing is more normal than most admit or care to remember.

At 8 weeks, I was ready to take my life. I had no clue. At 3 weeks I was using 12 depend pullups a day. Thankfully my GP and urologist / surgeon were great at keep tabs on me.

Like most people said 3 to 4 months and you will start to see improvement. Do your kegel exercises. At your 6 to 8 week follow up - ask to be referred to a pelvic floor physical therapist. Some guys had mention that they were referred to before their prostatectomy.

 

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I found that Michelle Kenway's YouTube video, "Kegels for Men - REAL TIME Daily Kegels WORKOUT" to be the best because there is a time clock and you can follow her instructions in real time. I started using it 6x per day and still use it 3x per day. Her video helped me recover enough to resume hiking about a month after catheter removal with minimal leakage. I now hike 6 miles/day with 20 lbs of weights without any leakage while I'm walking. I think my pelvic muscles automatically clench while I'm walking. I don't have to think about it.

Everyone heals at a different rate so try to be patient.

 

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I am now 48... Actually 55 hours post catheter removal. For any new people, myself included, that first day is a OMG moment indeed.
I made it through Friday and Saturday night with only dribbles from a slight cough and a very short moment of laughter that a dear friend provided.
I didn't sleep much night #1, scared to death I'd wake up swimming in urine. So I went to the toilet basically every hour or so.
Night #2 I took a chance and slept 3+ hours before waking up to go to the toilet.
There still is no urge of any kind to pee. Just the knowledge that I know there's urine that needs to come out.
I have been doing kegels periodically throughout yesterday and today.
Doing 4 sets yesterday and having done 4 sets today ( still looking to do a few more today)
Being careful not to over work myself.
I have come to a even keel place that is all about time and kegels. And fate.
Just a little update for anyone interested.

 

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Wowjustwow: The first few weeks I went to bed with the Night Time Depends plus a Depends mattress pad. The Depends did a good job of containing the liquid. I don't think I ever wet the mattress pad. Having both alleviated the fear of getting the bed wet and helped me get some sleep. I soaked the Night Time Depends frequently such that I had change them several times in one night. Things improved pretty quickly though. But I was not getting much sleep the first week or so.

 

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@jcdunn101

I have been using a mattress pad as well. The very same one since night#1.
Nothing on it as well.
I'm going to be very honest here...I was not at all emotionally prepared for what to expect. I'm seeking out this forum, I did find solace in the comments and knowledge shared from all the people who shared. Thank you.
I'm just coming to a understanding that this situation, is unlike any situation I have ever encountered. I am grateful for life and in doing so I am prepared to embrace the struggle and roll with it.
Thank you all for your shared moments of your own doubt and depression, as well as your moments of achievement. All is appreciated.

 

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I can't take credit for the following critique as "what engineer in their right mind would run a hazardous waste line thru a recreational area" but years ago our life expectancy was about 60 years old and I am 75. (think about the guys who thought up Social Security) At any rate someone did, and one in six of us get to pay for it, physically and emotionally. I have been very lucky with the incontinence aspect, but I have been fighting it too. I already know from experience how important it is to help others with their struggle. One it gets your mind off your own problems, because someone else has worse issues, Two, the karma generated by your support for others comes back to you in a big way. (check upvotes on your posts, nice to know I actually helped someone ) Stay tough, stay focused, and don't even think about giving up. Not an option!

 

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I cannot say that I was unprepared for what may happen going into surgery. I had a local doctor in Kentucky and a very good surgeon in Tennessee. My local urologist gave me a book on prostate cancer I think before I even got my pathology report from my biopsy. I hesitated to read but did and I am glad I did. Prepared me well for what to expect. But still in the back of my mind I thought, I am young I will do better than that. I’m some ways I have and in others I still struggle. But I am still here to struggle.

 

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@Alh63

Might I ask your age at the time of your surgery?

*I'll not even delve into any "ED" discussion at this juncture, fore that is a entirely different beast.
But another uncertainty that weighs heavily on all US I'm sure.
Can't help with the incontinence either, added stress.
Smh

 

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No problem, I was 56 when I got my first psa test. Less than a month later I had turned 57 and already had biopsy results. I had to wait about three and a half months for the surgeon I wanted.

Sorry long explanation, I was 57 and am now 58. Sorry if I gave the impression that I am younger. 56 just seemed young to be facing cancer that I know can be harsh. I now know through this forum there are others who have been diagnosed and treated much younger than myself

 

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55 y/o male. Had robotic-prostatectomy this past Dec 2021. I use 1 Depends (night defense) per evening and about 4 regular Depends during the day. My nights aren’t too bad. The leaking at night hasn’t fully subsided but I can tell it’s getting better. During the day the leaking does not stop unless I’m sitting. I’m two and a half months post op and started physical therapy. The Incontinence is really doing a job on my psyche.

I am glad I visited this site. I feel better knowing that what I’m experiencing is normal but still an awful experience. Including not receiving enough information on what to expect post catheter removal.

I’ve received my first blood work and happy to report “cancer free”. I’ll take it and continue to do my kegals and PT. Good luck guys and keep spreading the word.

 

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Glad to hear you’re cancer free Vasquezlg! I know the incontinence is a pain. I’m 5 months out and when I’m up and about, sometimes I leak like the Titanic. Do your Kegels, try to limit caffeine and alcohol. Hang in there. Won’t lie, you’ve got a long way to go. It’s a marathon, not a sprint.

 

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@Vasquezlg Sounds pretty similar to my experience and very similar to most of the men on here. Hang in there. And congrats on the bloodwork. That first one is a big relief when it’s good.

 

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@Vasquezlg You are doing good - Glad to hear you are going to pelvic floor physical therapy.

The 2 month point was my breaking point. I expected incontinence, but did not understand how much and how often I would leak.

We all have different time frames from 2 months to 12 months.

Keep up the work. I added walking into my routine slowly at first and built up to 2 miles in 35 minutes.

 

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Thank you all so much for the feedback. Really good to hear I’m not alone with my struggles.