Incontinence after Radical Prostectomy

Hi Richard,
I had the Op 29th sept 2016, I had the catheter out 3 weeks later and leaked and leaked, it really got me down, I could feel myself peeing all the time and it was horrible so I know how you feel, I have read that it can take anything up to 2 years to get dry as it is down to lots of things such as experience of surgeon etc, also age can play a big part as the older you are the weaker the muscles and the longer they will take to get up to strength, there is a phone APP for Android called Prostate Aerobics which you can download for free it is very good, I am down to 1 small pad a day now and dry most of the time just small drips and dribbles, all the men who are dry straight away are very very lucky but I don't think there are many, everyone is different, hope things improve soon,
best wishes
Paul

Hi Richard, how sad that your surgeon did not give you realistic expectations of the treatment option you had chosen. As you are only 13 months post-op I assume you are still under his care? What has he said or done about it?

The official NHS statistics say that 90% of men will be dry by 12 months after surgery but they count 'dry' as using one pad or less per day. So officially you are almost dry although it won't seem that way to you.

Why are you still leaking and what can be done? Well that depends on what is causing your incontinence. when you had the op they cut through your urethra and some of the pelvic muscles that control the bladder - your brain has to relearn how to control the muscles much as when you were being potty trained as a toddler.

The other type of incontinence is as a result of permanent damage being done to either the urethra, the muscles or the valve that opens and closes your bladder (for some men this has to be removed and then replaced during the op, not always successfully). This type of incontinence cannot get better by itself and may need further surgery.

If you are dry at night and only leak through the day you are more likely to be suffering the first type in which case you need to make sure you are diing your oelvic floor exercises correctly and possibly ask for a referral to the incontinence clinic to see whether bladder retraining would help.

If you leak day and night then the more serious damage may have been done. Sadly, if your surgeon was dismissive of the risk beforehand he may not be very proactive in getting you further help now. What you need is proper resting of your flow rate, your fluid intake and output and probably a scan to see how well the valves are working. If the surgeon won't arrange this, speak to your nurse specialist or ask the GP for help with a referral to the incontinence clinic.

Don't be fobbed off.

Is anything improved. Lynn makes very key points. You need to get proper diagnosis before 3 months. Ie as I understand 3 muscle groups and nerve control obviously. Very complex. Things that spring to mind .. are you voiding completely or retainining any urine. Dry at night ?

Are you restricting or even avoiding caffeine and alcohol completely?

I was so so lucky as dry in less than 48 hrs , however visiting urology twice and the lady there was so professional and informative. She told me to cut out any cranberry and fizzy stuff. Treat the bladder kindly etc.

Although I do Pfe before and after. I can't hold muscle for more than 3 or 4 secs. However I can do at least a minute of very quick pulls. I don't do them every day. I do these random. You need to find out whether this is muscle or nerve signal. On another positive it's been 2 yrs since my RP and ED is going in the right direction., excuse the pun. So nerve signal rerouting . Maybe regrowth does occur. I have zero nerve sparing. There's massive trauma in that area as you know. You need to start making noises in my opinion. I'm no expert however urology has plenty of gadgets to see exactly what is going on with you.

Hope this helps.

Edited by member 02 Mar 2017 at 12:06  | Reason: Not specified

Hi Richard,

I,m 18 months post da vinci prostatectomy and i,m still leaking, i was hoping to be ok now as about 6months ago i went from wearing the

bloody awfulwrap round tena thingy,s to a the little v shaped ones you put in the front... alas things didnt get anty better, i,m still only

using about 2 a day which is great i spose listening to a lot of the guys on here but i must admit its been getting me down.

Last week i had my appt with my urologist, ( the one who did the surgery doesnt see me anymore) as my psa has been 00.5 or thereabouts from just after my surgery  and YES that is fantastic :) so i,m "remotely monitored" but the waterworks :(  anyway my uro seems to think after 18months

there isnt much chance of any improvement... so i.ve studied all the options botox, sacral nerve stimulation et etc and the one that ive

opted for is an advance sling, trouble is as you know its difficult to get anyway opinions on this apart from the ones that come up when you

ask mr google... i p.m,d a guy on here called john aka fireblade who very kindly told me how it was a successful op for him and he was glad he did it, other than that only Tony p seems to know anything about this procedure ... by the way i,m dry at night, always have been

and i,m fine when sitting down, but like someone else who posted leak a fair bit as soon as i stand...

i dont want this op but also dont want to wear pads for the rest of my life.... i,m on the waiting list at a major hosp in Leeds and the dr said

it may be 3/4 months..i,.m hoping for a miracle :) but if i do end up having the op i,ll post my details of surgery, pain, improvement etc on here so anyone else can be informed, ive had some great info from people like Lynn and Bri and many more on this site and am grateful for that :) Anyway all the best mate

Hi Lola,

Occasionally the Gleason score is downgraded when the Prostate is examined in the lab but where there is a change it is more often upwards. Either way, I don't think in itself this affects the degree of incontinence, the subject here.

i think also that it depends on your lifestyle as well as all the other factors like experience of surgeon and so on. i was always a very fit man doing many sit ups each day, and yes at one stage i did have a clearly defined six pack and also used to run marathons.
I was very disciplined after my full RP doing my excercises regularly and although i am fully dry now i still do the excercises at least every other day, especially after having 36 session of radiotherapy.
So i really think that there is no guide lines to this problem post op, we are each individual with different levels of fittness and body strengths.
i was very naughty as i still continued to drink red wine and the occasionaly malt whisky, but i will not drink any carbonated drinks now if they contained any sort of artificial sweetners, as i used to drink Diet Coke like water now i will not touch the stuff, i read up on the artificial sweetners and think they had a lot to do with my prostate cancer, i also now drink tea with no suger ugh dont like it but wont use sugar.
What i am trying to say and very badly is that we are all individuals and all react differently to the way we recover from the surgery, we are all different and have different DNA to aid our recovery dont get dispondant or discouraged by others sufferers stories.
Measure your progress in baby steps, you will get dry and make a full recovery, good luck to you.
Tony