I had my surgery 10 days ago at the Christiaan Barnard Memorial Hospital in Cape Town South Africa. My Surgeon Dr Greg Boustead assisted by Dr Dave Bowden.
Monday afternoon and I went home Wednesday mid day. I must admit that I thankfully “lol” did not know what I was letting myself in for. Not really. I just thought it was going to be much easier. More pain and discomfort than I expected especially with the catheter.
My partner Christo is a fabulous “nurse” and taking great care. Clips and Catheter came out two days ago and even though the freedom at first was wonderful I was a bit devastated as to the inconsistency and how I had no control and just getting more and more soaked. Wow “ why did no one tell me it was going to be so difficult “. Lol I have to humor this.
On a serious note the Dr explained that the inconsistency will get better in 48 hours ........mmmmm not yet really. Lying down no problem and I now put pressure on my penis head when getting up to get to the toilet. When sitting it’s sort of ok but some leaking. Standing up and walking around is not funny.
I don’t think I should allow this to get me under at this stage but I went to work for 2 hours this morning and standing talking to my staff it felt quite humiliating as I just got more and more soaked. I just could not control it.
It’s early days I am sure but boy oh boy. I don’t wish this on anyone.
Hopefully someone can share a bit of their experience...... I’m sure I’m not alone..... don’t we all just want to be fine yesterday.
Thanks to you all, I am sure the journey has just begun.
Regards
Paul
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Paul8300
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All men who have a prostatectomy experience incontinence. Your doctor should have told you what to expect. He also lied to you when he said it would get better in 48 hours - it won't. It usually takes 3 months at least, and most (80%) of guys will regain continence within a year. Even then, there may be occasional leakage (called "stress incontinence") when you laugh, sneeze, cough, play golf, etc.
You should have been instructed in how to do kegel exercises. This involves practicing tightening the muscles of the pelvic floor. Hold a contraction for 5 seconds and relax 5 second. Repeat 3 times. You practice them 3 times a day, everyday. In this way, you learn how to shut off the urine flow.
There are pads you can buy that you keep in your underwear that soaks up the urine.
If you weren't told about any of this, you probably weren't told about erectile dysfunction and penile rehab. Only 37% of men who have nerve-sparing surgery regain potency, and it is seldom back to previous levels. You should have started daily doses of ED meds, daily use of a vacuum pump, and, if ED meds alone don't get you hard, you should inject Trimix thrice a week. Starting these measure early may forestall penis size loss, which is common. There are other side effects, including climacturia, Peyronie's, anorgasmia, and dysorgasmia (Google them).
I hope you can switch to a different urologist who shows more care and is honest with you. Your surgeon has done his job - time to find a more patient-oriented doctor now.
Thanks for your reply. I suspect my Dr is trying to be very positive, he mentioned that the inconsistency will last a while but they believe that the operation went very well and that I should have a quick recovery.
I am doing the exercises but is taking caution.... don’t want to “damage” anything. I am wearing the pads, it helps a great deal.
The nerve sparing apparently was great but he has not given me any ED meds yet which I will follow up tomorrow. Hopefully I will feel safe to start to “play” and explore with a vacuum pump after the weekend.
Tall Allen is exactly right--they should have given you a much better idea what to expect. But he is also right in that you are most likely to have improvement over the next three months or even longer. I'm also with Tall Allen about erectile dysfunction and rehab. Ask about it and get help. Right now you are liable to feel very discouraged, and it's easy to get depressed. I was i pain, completely incontinent, and miserable at your point in the process. But if you take some positive steps to help yourself--and your partner supports you in this--you are less likely to be depressed because you are acting. Best of luck, and I hope you keep us posted as things get better!
Yes, it does sound as if your doctor could have prepared you better. It has been three years so I don’t remember how long exactly, but even doing kegels, I wore the diaper-style pads for a while. Then I graduated to heavy pads, and eventually to light pads. I still use the light pad just for security—the occasional unexpected lift and twist can be problematic.
It can be frustrating and humiliating along the way. There is no way for most of us not to be embarrassed when we leak. I found that my penis and the pads seemed to miss each other in alignment. Especially, early on, I would find myself in a public setting with a large wet stain. My solution was to use a couple of pads to cover the territory.
It took time, but I have been living a good and fulfilling life. I was even having a great sex life, until the cancer reasserted itself. Now I’m on Lupron, which has killed my libido. But it hasn’t killed the affection between my very understanding/supportive husband and me. It sounds as though you also have a great guy by your side. If you keep the communication going and he is able to be as honest about his feelings (it changes his life, too) as you are, you have a very good probability of a great, if different, life from here on out.
I am so sorry to hear that your cancer is back and trust that you’re going to be a winner. It’s great to hear from guys going through the same here and what you experienced. Gives one hope.
It seems for now if I’m taking it easy at home I can control it and I have to make sure that I empty my bladder often enough. Too much movement and walking at this stage gets the bladder flowing and I feel I have no control.
You are right I have a great partner as it seems you have and he is a star.
Hi Paul, the incontinence can be helped by training your pelvic floor muscles and strengthening them by a series of exercises. I've documented them in an earlier post. 3 sets 3 times a day, have helped me from a dribbling wreck, relying on initially nappy-type underwear (I think they were TENA), to thick and progressively thinner underwear liners. I found the liners were more effective with jockey type brief underwear, as they hold the penis up, whereas boxers allow it to hang and leak more. Practice each of the 3 exercises constantly. I am, 3 months post surgery 2 months and 2 weeks post catheter removal), now mostly continent, though still use 1thin pad approx per day. My urologist and oncologist recommend radiotherapy once the incontinence is as gone or almost gone; apparently the radiation therapy can temporarily increase incontinence. My urologist definitely warned me about the incontinence, but the physio who showed me using ultrasound, how to contract the pelvic muscles and do these exercises (and, if you're interested you can weigh the pads to see improvements in the amount of urine loss), and would be highly recommended.
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