Recovery of continence following prostate removal

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John. I have found the Coloplast conveens great for those days when I going away. I use pads when I'm at home. I'm surprised you have found a problem with the conveens. The important thing is to get the measuring wheel or ruler. Normally they send it to you but you can also access from the website. You measure your circumference. It is important to be totally dry and ensure there is no residual soap, for example, after washing. I usually use a piece of kitchen roll/ tissue to ensure complete dryness. My problem is getting the condom catheter off at the end of the day. I have to use an adhesive removal aerosol, otherwise it can be painful

 

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Just joined the forum. I had my RP on august 11,2022. I was warned that incontinence was to be expected post op and should improve some by 3 month mark. I had the catheter removed 2 weeks post op. 7 weeks out and I still have virtually no bladder control. Constantly trickling out. Only “progress”is getting a full sensation lying down or sitting then kegaling to the bathroom where I am able to empty for about 10 seconds but peeing the whole way there. I was so focused on getting rid of the cancer that I minimized the impact of the incontinence. Now I’m really worried that I will never get control back. I’m doing kegal exercises 6x a day and will start walking as many of you said that could help. I just thought I would see some improvement by now. I am 63, in good health otherwise and just returned to work today and it’s a struggle dealing with this. Just looking for some hope.

 

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Boomer,

While it may not be any consolation to you. You are doing all the right things. You didn't mention diet but anything with caffeine or alcohol won't help you with regaining continence.

The first signals the body is recovering from surgery is usually the ability to not leak while laying down or in a prone position. Granted when you stand up the bladder releases urine.If I read your posting correctly, you are regaining control while laying down. That is a positive sign.

For most of us we regained about 90% continence by the end of the first year. Some will report more and others less but 90% is a realistic goal. The last 10% takes continued vigilance on your exercise routine.

Even then it may give you peace of mind to wear a pad if you are going to be out for some time. I tell all my friends to accept and accommodate and get all with your life.

Best of luck.

Greensleeves

 

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@boomer59 Pelvic floor physical therapist helped me to improve especially with nighttime which is usually the first improvement.

My journey - notes that I made for my doctor visits. I weighted my pads and pullups, kept a spreadsheet, and converted averages to ounces. I used a digital kitchen scale measuring in grams - 1 gram equals 1 milliliter (close enough for comparisons).

Incontinence as I see it.
Type of leakage - standing - constant (overt) dripping every 2 to 10 seconds - bladder neck / external sphincter not closing.
While I am able to keep from squirting as I am standing up, the urine dripples or slow flow out within a few seconds. I am able to hold some urine in until I make to the bathroom.
I am able to push urine out (increase the flow rate) in the bathroom ( which I could not do or feel at 4 months).

My progression (leakage in ounces)
2 months - 60 oz; nighttime 2 pullups (strong stream shoots out Depend pullup using Northshore Go Supreme pullups)
3 months - 40 oz; nighttime 1 pullup (6 to 17 ounces)
4 months - 30 oz; Pelvic Floor Physical Therapy; nighttime from 4.3 down to 2.3 oz
5 months - 30 oz; stopped muscle relaxer; nighttime from 2.3 down to 1.4 oz

6 - 7 months - 20 oz; started Solifenacin for OAB - decrease due to SOlifenacin.

8 - 9 months - 17 oz; Mybytriq and Gemtessa - really did NOT provide much improvement and are not covered by my insurance

10 months - 17 oz; Uro-dynamics and cystoscopy - schedule male urethral sling surgery - 17 oz
12 months - Male Urethral Sling Surgery - (Sept 2022 one year - I recommend the sling surgery
13-16 months - self-catheterizations (1 weeks 4 times day; then twice a day; daily; then weekly; then stopped)
17 months to now (24 months) - I leak about a quarter of ounce at night. If I take migraine or headache medicine, I will leak more. I went down to just a pad in my underwear until April 29, 2022 when I released out of the pad and had to change my sheets in the middle of the night. I will always have the above sheet bed pad and wear depend pullup, pad, and underwear.

 

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Thanks for the replies. I’m just trying to get a sense of if I’m on course or not. I thought I’d see more progress two months out but then again I’m not known for my patience. I stopped alcohol at surgery and don’t do caffeine. My surgeon told me I’d be 100% incontinent after catheter removal but usually some control by 3 months. Even though I do have some volume in bladder after sitting or lying down I’m still leaking 24/7. My depends is soaked in am but as I said if I kegal and hurry I do void at toilet. I just am not seeing the progress I expected. It’s great to hear from folks who have been through this to gain perspective. Again l, thanks for both your inputs.

 

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I had RP in 2016. I am now 56. I have had to put on a light diaper when jogging. I am generslly ok at night and when in office. I guess this strese incontinence. I have accepted it. Live goes on.

 

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I saw little improvement in the first three months. Month four was impacted by me having Covid. Then I saw some improvement dropping from 600 ml daily to sometimes less that 100 ml per day. Three to six months is often quoted but other experts say it can take a year or even 18 months. Like you I had no other health issues, not overweight and reasonably fit. I am 67. Just be patient. Keep doing the exercises, avoid caffeine, fizzy drinks and alcohol. Also take your last drink several hours before bedtime - no night cap. I know it's difficult to be patient and I have days when I feel down about the slow timescale of improvement. I find pads warm, bulky and uncomfortable and sometimes use a conveen external catheter if I'm going out for a full day. It provides a nice relief from the constant feeling of wetness. I feel certain you will continue so see improvement over the next weeks and months

 

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I should say I am now six months post op.

 

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Hbrownlow thanks for your sharing your experience. It’s helpful to know that my experience is similar to yours and others.
Thanks

 

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I had my RP August 9th, 2022 with catheter removal on August 17th. 63 year old, male, in decent shape.

IMMEDIATELY AFTER CATH REMOVAL:

Right from the get go I had no leakage while sitting or lying down; however, as soon as I stood up I had to immediately rush to the bathroom while making a very conscious effort to “hold.” I did get to the bathroom “successfully” approximately 90%+ of the time. While standing or walking I had continuous leakage.

ONE MONTH LATER (APPROX. MID-END SEPT):

No leakage while sitting or lying down; when I stand up I still need to get to the bathroom. However, now I can take a few minutes (no rush) and don’t have to make an extra effort to “hold.” I have a 99% + “success” rate. While standing or walking, I now have only occasional squirts. Recently, I attended the neighborhood block party and was OK for a couple of hours before beginning to lose control while walking home. Most of the time I find one pad a day is quite sufficient.

On the whole I feel quite lucky to be doing as well as I am. However, still can’t wait to improve in a couple of areas. First, I have to make a trip to the bathroom EVERY time I stand up from sitting or lying down – it doesn’t matter if I have been sitting (or lying down) for 5 minutes or for five hours. As a result, my entire life seems to revolve around going to the bathroom, which is a real drag! Second, at night I was waking up and then having to take a trip to the bathroom VERY OFTEN. I started keeping track of the frequency and a week or two ago it was at least 14-16 times every night, which was very disruptive to getting good sleep – I’d get 4-5 hours of sleep and my Zepp showed it was all light sleep, practically no REM or deep sleep. The urologist started me on one 5mg Ditropan tablet every evening, and now I’m down to about 6 times every night. Per my Zepp I’m getting about 7 hours of sleep and a decent amount of it is deep and/or REM, so I’m feeling much better in the a.m.

Prior to surgery the urologist had (somewhat casually) mentioned incontinence as a side effect, but IMO did not sufficiently emphasize or talk about it. Luckily I had googled RP and also started lurking on the forum, so was as “prepared” as one could be. It’s not fun, but overall I feel I have been pretty lucky.

P.S. Yes, have ED too, but I’m not even thinking or worrying about that until the incontinence is history!

 

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Prior to surgery the urologist had (somewhat casually) mentioned incontinence as a side effect, but IMO did not sufficiently emphasize or talk about it. Luckily I had googled RP and also started lurking on the forum, so was as “prepared” as one could be. It’s not fun, but overall I feel I have been pretty lucky.

Welcome to the NAFC @Sni. It does not surprise me that doctors would take the less approachable route - because there not the ones emotionally handling it. I think the true and real doctors are the ones that listen more - and let you express yourself. I've found some diamonds in the rough from places I've been. Some very professional and caring; others your like a number.

It's nice to meet you and may you be active with us and can share more insight to others on these boards. You will find a many great people here.

Blessings In Christ,
Honeeecombs

 

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IMMEDIATELY AFTER CATH REMOVAL:

Right from the get go I had no leakage while sitting or lying down; however, as soon as I stood up I had to immediately rush to the bathroom while making a very conscious effort to “hold.” I did get to the bathroom “successfully” approximately 90%+ of the time. While standing or walking I had continuous leakage.
...

P.S. Yes, have ED too, but I’m not even thinking or worrying about that until the incontinence is history!

Thanks for this report! You were way ahead of me. I didn't have any continence at all while standing for several months. Now, after 3.5 months, down to 2-3 pads/day - still suffer substantial stress incontinence.

I have had no ED. Still getting used to dry orgasms. They are not the same for me... but I'm not complaining.

 

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@JRImattox said: "Thanks for this report! You were way ahead of me. I didn't have any continence at all while standing for several months. Now, after 3.5 months, down to 2-3 pads/day - still suffer substantial stress incontinence."


Yes, overall I have been pretty lucky with how things have turned out. A better understanding and awareness of how much worse it could have been has certainly contributed to my mental well-being!

 

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@Honeeecombs Thanks for the welcome When discussing my options (surgery, hormone/radiation therapy) my urologist was reasonably forthright about the pros and cons of each, but it was still clear that he believed and was in favor of the surgery option. While it was possible that this was because he would be doing the surgery, it didn't bother me. I had already done a ton of research and pre-decided that I would go the RP route based on the biopsy results, etc. All in all, the only thing I feel he could have done 'better' was to emphasize more that one's bodily functions would be the all-encompassing, daily reality of one's existence for an extended period after the RP, even in a best-case scenario!

 

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I have attended my first prostate support group meeting last night. I was extremely helpful being able to talk to others going through the RP process. I was the newbie and the others were from a couple of months ahead of me to several years. I am much less anxious about my incontinence as most of the attendees had very similar experiences with good outcomes after more time. In addition to kegal exercises and pelvic floor PT most all of them felt walking daily helped tremendously with regaining continence.
I am very happy with my surgeon but at my next follow up appointment I’m going to suggest that he steer patients to this forum and the support group. Between what I’ve read here and heard at the meeting my anxiety over regaining normal like function is greatly reduced. I’m 7 weeks post operative and just returned to work totally incontinent. It’s an ordeal but you all have given me hope that the path I’m on is normal and I need to have a little more patience. Thank you all for relating your experiences and giving advice.

 

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@boomer59

Do you mind telling

Where you live?

Where the support groups was - church, community center, medical support facility?
My surgery was in Sept 2020 - so with COVID there were no in person support groups. Zero Cancer has a monthly meeting with the email topics seeming for advanced prostate cancer.

Thank you,
Terry

 

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I live just outside Allentown PA. The support group is through St Luke’s Hospital in Bethlehem which is where I had my procedure. The contact info is:
Heidi Kelly
Program Coordinator
Cancer Support Community of the Greater Lehigh Valley
944 Marcon Blvd, Suite 110 Allentown, PA 18109
610.861.7555
[www.cancersupportglv.org]www.cancersupportglv.org

They met in person and via zoom- one member zoomed from California. It was a great group and very helpful and knowledgeable.

 

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I live just outside Allentown PA. The support group is through St Luke’s Hospital in Bethlehem which is where I had my procedure. The contact info is:
Heidi Kelly
Program Coordinator
Cancer Support Community of the Greater Lehigh Valley
944 Marcon Blvd, Suite 110 Allentown, PA 18109
610.861.7555
[www.cancersupportglv.org]www.cancersupportglv.org

They met in person and via zoom- one member zoomed from California. It was a great group and very helpful and knowledgeable.

Thank you for the insightful information @Boomer59; and welcome to the NAFC.

@NAFC; I think here would be a great opportunity to get more services up and running for socialization as we live in a more connected age.

I'm not entirely sure what we are looking at in the future as this is a dated board; I just don't want to lose the people I have met here and have helped me through the emotional and mental toll that continence issues bring. Same goes for mental struggles as well.

It's like a small town really; I have my support groups for other things so cancer is no different - however I wish there was something more we could foster here in the boards of the NAFC. Definitely have tried to build off topic discussions - just hard to keep the momentum going.

Maybe just is too personal of a condition - which I live through myself - but there's gotta be something more we could do here.

A random thought for the night.

Blessings In Christ,
Honeeecombs

 

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It's Monday, 3:24 am. My surgery is Wednesday. Pray.

 

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God will be with you. You will come through. The robotic operation is quick and you will be out of hospital in less than 48 hours. Yes you will have a catheter for a couple of weeks but that time will fly in.