Experience post prostatectomy

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I had my catheter out today. It seems now that the urine just dribbles out constantly. My bladder doesn’t fill, and so I don’t see how I can practice control. I am supposed to submit a urine sample Monday, but don’t know how that will work. I did not really know what to expect. Everything you hear is vague. Has this been everyone’s initial experience?

 

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I had similar first couple of days when tried to stand and walking. I am 5 weeks removed and am still trying to gain full control but is slowly improving. Do kegels, drink water, get rest and slowly get back into walking.

 

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start doing kegels right away. most doctors will not tell you what to expect. that was my experience anyway. i would not have done the op had i known. but thats water under the bridge. find a physical therapist who does pelvic floor therapy asap. don't wait. its been nearly a year since my rp. i'm still using a pad a day; surgeon expected i would be dry within 6 months. they lie. anyway, don't recall having to give a urine sample. you could try an external catheter to collect urine. you can get them at medical supply stores or even on amazon. You would also need a leg bag to collect the urine of course. Do some searches on this website. you'll find most any question has been asked and answered. Most answers you get here are very helpful.

 

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Ask for a referral to physical therapy. Getting early training should help you longterm.

But after just a short while, don't be discouraged. There's a definite curve. Your experience in weeks, months, will likely be very different.

 

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Same here. I am 7 weeks from surgery and 6 weeks from catheter removal. First several weeks are hard. After the first couple of days I started getting some control. Now I am doing fairly well. I still leak when walking at a faster pace and when I run. Trying to figure that out.

 

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Agree with physical therapy as just started today. It took 3 weeks to get in so get staryed early

 

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Not everyone’s but many of ours were very similar. Hang in there and do your kegels. I was 3-4 months 6-8 heavy pads per day and wore external catheter for a month after returning to work. Many here had similar experiences. You can probably go through old forums and get answers and recommendations. Like I said, do your kegels, walk as much as possible, and have patience. That was the hardest part for me. I had my RP in Sept of 22 and now I use one light shield per day.

 

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I had my radical prostatectomy on Feb 12, 3 1/2 weeks ago. I thought that my catheter experience was bad because I honestly had about 10% bypass and my pants were always wet as the urine would run down the hose, even when using a pad. Since getting the catheter removed more than a week ago, I have absolutely no bladder sensation or control. I go through 8-10 diapers a day, including 2 night time and a mess on the floor in the morning, when I get out of bed. When I sit on the toilet, it's a constant drip. I'm supposed to return to work in 2 1/2 weeks, but work as an auto mechanic and standing, moving around, and sitting in customer's vehicle with one uniform per day. I'm not sure how to deal with the work experience. I've called a pelvic floor physiotherapist, but haven't gotten a call back yet. What can help with this and how have other's found to deal with this? Thanks.

 

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@RickB external catheter seems to make sense. if i was still working, i would have been using one. though nearly a year later, I'm down to one pad a day, but do have external catheters if i make a long trip and find there's too much distance between rest areas.

 

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Hello Hunter B. If you scroll through many past postings, you will see that most of us experienced what you are going through. As Dpalena alluded to, start doing your Kegel exercises, keep hydrated and walk. Dont expect to see changes measured in days, as the improvements can be glacier slow. More likely in the 6 month+ range, your internal surgery will have started to heal, and improvements will be more noticeable. I am almost 2 years post RP, and i still use one pad a day, but i do not let that impact my life. I am still playing sports and travelling. Lean on your family and friends (do not be embarrassed), and this forum. There is a wealth of knowledge and compassion here. Good Luck my friend.

 

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External catheters are not fun to wear but very effective for those that have to return to work. I work in a hospital and am on my feet for 12-16 hours per day. Like I said in earlier post, I wore one for about a month until my leaking improved.

 

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@RickB external catheter seems to make sense. if i was still working, i would have been using one. though nearly a year later, I'm down to one pad a day, but do have external catheters if i make a long trip and find there's too much distance between rest areas.

any recommendations? I think I'd need a silicone one (condom catheter?), due to skin irritation. Thanks

 

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@RickB i like coloplast freedom clear LS. if I had known someone would be asking my opinion, i'd have bought stock in it. haha. not. they just seem to stick better. and don't leak. and are latex free and made of silicone.

 

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@RickB i like coloplast freedom clear LS. if I had known someone would be asking my opinion, i'd have bought stock in it. haha. not. they just seem to stick better. and don't leak. and are latex free and made of silicone.

Thank you!

 

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Hello all. My experience was similar. Immediately after surgery I was leaking around catheter as well as through it. After removal I was totally incontinent and began using kegals, walking and seeing a pelvic floor therapist. By two months post op I was able to stay dry laying flat to sleep but wearing diapers during the day. Work was challenging and I was frankly miserable. I reached a point after a year where I decided that since my surgeon, the therapist and had decided I would not see any more significant improvement that I needed to explore another option. I underwent a AUS surgery which got me out of diapers but still required 4-5 pads per day. Six months later I underwent a revision of the cuff on the AUS and I am dry unless coughing or lifting heavy things. I’m not advocating any treatment but you’re not alone in where you are in your recovery. It takes time-months not days to see improvement. Hopefully you will be like most and gain near normal control. Most 90% do by a year but even if you don’t there are options for recovery. Despite everything I’ve been through I still would do it all over again as my PSA is undetectable and I’m looking forward to spending more time with my family. Good luck to you.
Boomer59

 

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Unfortunately, predicting bladder control post-prostatectomy is like predicting the weather in 3 months time. We can have a general idea but, there are so many variables.

Your recovery depends on your age, physical fitness, continence pre-op, post-op exercises.

A common feature is regardless of what the various medical sites state, it will probably take up to 12 months to achieve an acceptable bladder control. If you don't have this by then its time to consider surgical options.

I was fortunate to consult an experienced physical therapist 2 months before my surgery who started me on Kegel exercises and who I saw for two-weekly visits post-catheter removal for 8 weeks.

I effectively did nothing for the first 4 weeks other than 20 min walk per day and regularly standing and walking around the house; lifting no more than 3kg; drinking 2L of water per day and PT guided Kegel exercises of 5 x 5 quick contractions 5 times per day. From week 6, 5 x 10s contractions 5 times per day were added and my walking distance increased.

I logged my water intake, urine output, and leakage (weight in pad) for 4 weeks post-catheter removal which helped me work out the times of the day I could be more active. I still log pad weight per day to monitor leakage.

Despite this I showed little improvement in the first 6 weeks. My urologist felt that this was due to an over-active bladder and prescribed my Betmiga. He also suggested that I didn't need to keep drinkig 2L per day, but to drink when thirsty or when my urine colour indicated I was dehydrated. This had an immediate effect and I had a significant improvement in bladder control.

Now at 20 weeks post-op. My typical leakage is ~10mL per day with usually no leakage overnight. I use 1 pad per day. I still have a spurt when I lift anything heavy, but I can walk 6km without leaking.

I still do my Kegel exercises and ensure that I don't become dehydrated.

Regularly post to this site...there will be someone with a similar experience to you who may be able to give advice.

 

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Welcome to the Club !
I know that all the information that we get are pretty vague and it's hard to have the same baseline to be able to compare. Knowing everybody is different, I will try to give my personal experience with as much as precision. Firstly, please forgive me for my English as I am not a native.
I am 62. Got my 35g prostate removed on 01/11/2024. Catheter removed on 01/22. I am almost 2 months after surgery.
The procedure went well and I was home after a night at the hospital. The catheter became a friend after 4-5days because I could have the best nights without waking up. It was painful for me because I was few drippings outside the catheter when walking. From the day after surgery, I kept walking. I was doing 4000 to 10000 steps a day. Sometime in a circle on the first floor.
When the catheter was removed, I had 100 % incontinent. Nothing stays in my bladder! Niagara Falls…
No leakage when I was lying down or seating but as soon as I stood up the pipes were flushing.
I had to use a Tupperware to avoid changing my diaper every 1h. At that time I was wearing a diaper with a pad! I had some depressing moment. It was hard to have no more control.
But I soon my catheter was removed I started Kegels exercises following the instructions given by my urologist. I saw a PT the 3rd day after removing the bag. It was really helpful. She had a sonogram to check If I was doing my exercises correctly.
I had 6 weeks off for my job – I know I was lucky – and I did the following:
- 3 times a day 3 sets of Kegels exercises (15 long and 15 short squeezes: lying down, seating and standing)
- Walk as much as possible – sometime power walks
- Doing plank and abdominal exercises
Two months later, got back to work. Bit of stress but I had to go back to real world.
I can now hold and go calmy to the toilet. I am still dripping when I stand but I am working on it.
I saw the PT twice. She gave me some good small advice. You have to teach your brain to communicate with your bladder so each time you are doing a move that will produce a leakage squeeze slowly always to tight then do your move and release slowly. The goal is to acquire a muscle memory for the brain to control the bladder. If you leak when bending, do it again but first squeeze slowly, bend, when release slowly. Even if it’s not working just do it each time !
Knowing that you are going with ups and down, please allow yourself sometime. You will see some improvement. Stay calm, stay discipline on focusing on the Kegels exercises, walking….
Let me know if you need more precision. Stay positive

 

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Hi Rick a fairly long contribution and good read recently on this site on the ins and outs of condom catheters . I find them easy to use and a very effective management of IC . There is a lot of trial and error but stay with it and in the end it will all turn out fine for you

 

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Yes, I'm afraid there is no short cut. It might take months, or up to two years. I am almost 2 years post op and still leak. Dry at night and very minimal if seated or sedantory. Still leak a lot more if very active and especially at present I have had a very bag cough for weeks which causes a leak every time I cough. I have my doubts if you'll be able to go back to work in such a short time and the suggestion above of a conveen or external catheter with a leg bag is worth looking into. At the moment with my cough it is a saviour.

 

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With regards to what surgeons tell you the commonly quoted statistics are that 80 per cent of men are pretty well contingent, which of course means that 1 in 5 will always have this problem to deal with and given the number of prostatectomies that is a very big number. It is also why a number of others on this forum are thinking about another surgical intervention. You are no where near that decision. I am simply responding to the comments about the information by the medical professionals and some men's lack of preparedness for what hits you when the catheter is removed. Mentally that can be tough and many experience treatment regret. However, I know many who have had radiotherapy combined with hormone therapy and that hasn't been a bed of roses either.