6 weeks post RALP; update, comments, questions

Thank you to everyone for their input and help over years. I did active surveillance for a gleason 6 for almost 10 years, then a gleason 3+4 came along. I was trying to decide whether to do radiation or surgery. I decided on surgery because I had some urinary issues (weak stream, leakage after urinating) that the radiologist was concerned would be made worse by radiation, especially given the location of the tumor. And there would be very few options for treatment afterwards. Flomax did not help. So as much a I dreaded surgery, I did it. Had a great surgeon by reputation. But now, I have regrets.

First of all, it chaps my hide how much the surgeons (and I talked to a few) downplay the recovery and side effects. A week with a catheter about killed me. And that was just the beginning. Side note for those considering surgery--go ahead and wear depends even though you have a catheter. Mine leaked all over the place, which is very common. Even though it's common and depends should have been recommended to me, they weren't. I had to figure it out on my own.

Also, there are some surgeons who use a suprapubic catheter, and I would recommend anyone considering surgery to factor that in. My surgeon seemingly did a good job, says it went well, nerves spared, etc. He's a big name. However, in retrospect a wish I had a surgeon who knew how to communicate, and cared about communication. Because mine does not, I am left feeling alone and with lots of questions, regrets, etc. And the follow up has been terrible.

Six weeks post surgery I am continent only when sitting down or laying down. I'm incontinent when walking and standing. The only thing that has improved post surgery is that now by doing a kegel and holding it, when I get up I can make it to the bathroom. Very depressing to be this incontinent. And I've had no luck whatsoever with erections. They have me taking 5mg cialis every day. I haven't really felt like involving my wife because I spend all day pissing myself. But we'll have to figure something out there.

From everything I've read on here, at my age (51) I expected to be doing better than this at this point. What do ya'll think?

-Jason

Your body goes through some pretty rough trauma with this surgery. We all heal differently. Try to stay positive, though it's not always easy. Having a catheter is not a pleasant experience for anyone. You got through it! You mentioned one thing has improved since surgery. Be positive with that improvement and build on it. I did so many keigels I can probably crack walnuts with my pelvic floor muscles! Two years after surgery, I still do them. The nerve bundles experience trauma as they are moved during the operation. They don't like that. To have anything resembling an erection only six weeks after surgery seems unrealistic. Took me 12 months to get anything close to normal erection and I still improved after that. it's a very gradual healing process, you don't just wake up with a great erection one morning (in my experience) I used a pump several times a week to keep the tissues stretched. As far as doctors, both my Uro and surgeon are very educated and skilled with the little to no personality. Academic introverts with little gift for chit chat. My dad was a doctor and you couldn't get him to shut up! We're all different. You should receive many replies to your post. We all have our stories to tell and there are some great people here. Ignore anyone on this board who says you should have had radiation instead. They made their decision, we made ours. FYI, I was 57 when I had my surgery. Good luck and stay positive!

JRK, keep doing your kegals. Seriously. Eventually it become automatic and you don't even realize you're doing them.

Most doctors won't even consider doing things like a sling or a AUS for at least 6 months to a year. You're still healing. Like others, I was surprised at how much the surgery took out of me. I didn't really feel good--sleeping well, able to do normal physical things, for at least 6 months, maybe longer.

Thanks, Stephen.That's what I need is a plan. All they gave me was information on the basic kegel and sent me home. I'll definitely try the different positions.

A lot of people promote RT these days over surgery, but when you have urinary obstruction issues RT doesn’t make a lot of sense.

It would have been helpful had someone measured your sphincter length from the MRI and determined your incontinence risk before surgery. I would have the images reevaluated for sphincter length determined. If it is short, all the levels in the world won’t help you.

Also there is a bit of an art to doing kegels properly. You have two muscles involved in the process. Ask you surgeon to send you to a physical floor therapist.

The erectile function returns, you are likely going to ejaculate urine. If all else fails, an artificial urinary sphincter is an option.

jason,
my surgeon was also weak in the area of setting expectations for side effects and healing. so i just rolled with it. unfortunately, i pushed myself too hard too early and ended up with a nasty hernia. so be slow and gentle with yourself for the next few months. i had no idea how involved the RALP surgery was until i watched a video on youtube. it takes a long while to heal. and i didn’t become continent until about 3 months after surgery with plenty of kegels and physical therapy. all the best to you!