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Have anyone had postrate surgery. Can you share your experiences. Did you have any incontinence isues? If so, how did you deal with it? Thanks

superb_h wrote:Have anyone had postrate surgery. Can you share your experiences. Did you have any incontinence isues? If so, how did you deal with it? Thanks

Yes, in 2022 I had a radical robotic prostatectomy with 100% bilateral nerve sparing for Gleason Grade 7 Prostate Cancer.
Results were complete removal of the tumour, which was wholly contained within the prostate gland itself. Hadn't spread anywhere else.
Thankfully I'm still here and currently cancer free. All PSA tests since surgery have been zero/undetectable for PC. That's the good news.

The bad news is that the side effects have been awful, despite the nerve sparing procedure. I was 100% continent and had good erectile function before the surgery. But I had terrible urinary incontinence immediately after, with extremely heavy leakage requiring up to 7 heavy duty pads per day.
Didn't want to go anywhere or do anything much as a result. It took about 18 months to get it to a more or less manageable level but I still often required pads. Tried various approaches to fix it, mainly pelvic floor exercises and medication for overactive bladder, which had limited effect. Eventually the leakage became trivial but very persistent, and it still really bothered me. I'm very active and was always pretty fit prior to my RRP, and I'm very intolerant of any leakage however small. So I went to a urologist specializing in post prostatectomy incontinence. After urodynamics testing I was formally diagnosed with overactive bladder. I wanted to get a urethral sling fitted, but was told it wouldn't be possible to get the tension correct due to the trivial level of leakage. It could either cause urinary retention or might actually make the leakage worse. So I was put on a further course of a different overactive bladder medication, which had zero effect. In the end I was offered a procedure to inject Botox into the wall of my bladder. I had that done in July 2024 and the symptoms have mostly disappeared. I still occasionally get some trivial leakage but it's usually manageable, although it still really affects my self esteem when it happens. I'm basically 100% pad free but sometimes I'll wear a very lightweight one, just in case, for strenuous sustained activity, or if I'm going somewhere important where even the smallest accident would be embarrassing.

I also had absolute zero erectile function after the RRP. For 3 years I put up with that and tried all of the more conservative treatments - pills, Trimix injections, focal shockwave therapy and using a medical grade VED. I had no improvement whatsoever and nothing provided a workable solution for me.

Finally, 9 weeks ago I had an inflatable implant installed and it's going really well. In addition to regaining control over my erectile function, I've also noticed some incidental positive effect on the residual incontinence. When active I seem to now have very few instances of any leakage at all, fingers crossed. I read a study done some years ago in South Korea where post RRP patients with significant incontinence were given penile implants. The premise was that they should leave them partly inflated at all times to prevent leakage. It was a very small study but the results were promising, with most patients reporting zero or dramatically improved incontinence. I don't leave mine inflated but wonder whether the same effect is happening due to increased pressure on the urethra from the implant cylinders. There is a lot of gear down there now and it noticeably takes up some space.

I did not have surgery but had proton beam therapy radiation. I had ED for a long time before this treatment due to cardiovascular disease so that was no surprise. I got an IPP which was great. I wish I had not waited so long. About a year and a half after the IPP I developed severe urinary incontinence. I tried a penile clamp with some success but could stand it for only about 2 hours. Then I found the same study from Korea where men who had undergone radical prostatectomies with resultant incontinence and ED received IPPs. Various inflation levels resulted in 72% of the men obtaining successful control. I thought, I can do that! I found 30% inflation was optimal for me. It did not significantly increase my bulge and was quite manageable. I also thought that the success was due to the added pressure on the urethra which acts like a sling. Then I came upon the idea of going to 100% while sleeping at night. I discovered that this was effective, and I did not need to inflate during the day. I still maintained control. I think this is a sort of toning therapy for the urethra. At any rate it works for me. Two other FT member have reported to me that they also have success with this protocol. 100% inflation at night does not bother me and waking with morning wood has erased many years. Plus, I am ready for any opportunity that might present itself. Try it. You'll like it. Let us know how it goes.

doctuth

doctuth wrote:I did not have surgery but had proton beam therapy radiation. I had ED for a long time before this treatment due to cardiovascular disease so that was no surprise. I got an IPP which was great. I wish I had not waited so long. About a year and a half after the IPP I developed severe urinary incontinence. I tried a penile clamp with some success but could stand it for only about 2 hours. Then I found the same study from Korea where men who had undergone radical prostatectomies with resultant incontinence and ED received IPPs. Various inflation levels resulted in 72% of the men obtaining successful control. I thought, I can do that! I found 30% inflation was optimal for me. It did not significantly increase my bulge and was quite manageable. I also thought that the success was due to the added pressure on the urethra which acts like a sling. Then I came upon the idea of going to 100% while sleeping at night. I discovered that this was effective, and I did not need to inflate during the day. I still maintained control. I think this is a sort of toning therapy for the urethra. At any rate it works for me. Two other FT member have reported to me that they also have success with this protocol. 100% inflation at night does not bother me and waking with morning wood has erased many years. Plus, I am ready for any opportunity that might present itself. Try it. You'll like it. Let us know how it goes.

doctuth

Thanks doctuth. That's really interesting, I'll definitely try those protocols. I'm only a few weeks into cycling and still have significant discomfort at 100% inflation after about 45 minutes. So I'll leave the overnight strategy until I've broken in the implant to a more comfortable level. Do you have a recommended sleeping position? I'm usually a side sleeper, which I guess would be less likely to put pressure on a fully inflated implant. In the meantime I'll play around with the ~30% inflation when out and about. I've noticed that after a cycling session I rarely have any continence issues, even when completely flaccid. Maybe residual pressure in the cylinders helps, as I usually still feel somewhat firm for quite a while.

Pre IPP I used a penile clamp at times, but also found it uncomfortable after extended wearing. But it was often a lifesaver for me when I was reluctant to go out and didn't want to wear a pad. The one I have recommends that it is released every two hours. I haven't used it since long before the IPP surgery and I think it would be way too difficult/uncomfortable at present. In any case I haven't really needed it for some time.

Yes, involuntary morning wood is a thing that only exists in my memory. But at least we can create our own now .

Thanks for your reply. I think that the inflation protocol will definitely help you since your leaking problem is minimal. I have a Titan with the largest girth available. My girth is 7.5 inches so there is a lot to work with. Having a full shaft may add to my success. I usually press the deflate button and let the fluid equalize. If I try to deflate to the max, I get a significant back fill after a few minutes which leaves me at about the same results. Plus, I add one pump to reset the valve and make the next inflation easier. All of this leaves me with a constant chubby which I would estimate is about 15% inflated. This might also aid my control during the day. I am now a definite show-er but it is all good. I didn't get the implant to have a flaccid penis. I had that for far too long.

Regarding sleeping position, I have always been a side sleeper. Tenting has not been a problem. But even when standing, I hang at about 4-5 o'clock. My natural erections used to be at about 2 o'clock. My guess is that the implant is straight and when fully inflated is relatively heavy. My bone pressed length is 7.5 inches so that is a bit of a lever-arm. So even lying on my back it tends to fall between my legs. Maybe that is too much information.

Regarding the clamp, I had a humorous experience. I needed a CAT Scan to check an abdominal Aortic
aneurysm. While preparing me for it, the nurse removed my pen and my clamp from my shirt pocket. I knew it would show up on the image, so I had tucked it in that pocket to void any embarrassment. She said, "What is that?" I said, "You don't want to know." She said, "Yes, I do!" So, I explained in detail and warned her that she may also see some significant hardware in the lower region of the image. She smiled and proceeded. You are only a few weeks into this journey, but you will eventually have a collection of your own adventures. Embrace it!

doctuth