First post RALP followup with Urologist - mixed feelings

[jaybojammer]

Well, I had my first follow up with my urologist since Davinci surgery and the ultra sensitive PSA was 0.007. That's the good part. I also had a UTI since the surgery (caught by my PCP at my annual physical two weeks ago) and was given Augmentin (it's working), but I don't know if he was trying to console me or tell me I was lucky when he said another surgery patient after me had a UTI too and was admitted when presenting to the emergency room with sepsis. Geeze... didn't know what to say after that.

Then we discussed the incontinence that follows surgery and I said my progress was good. I graduated from pull-ups to pads after two months and now I'm down to 1 pad a day (actually today was my first day to try going without one and I had no leaks). His grad student that I spoke to before he came in said that's good progress and whatever stage I'm at when I hit six months will be about the best I can expect.

Then I changed the subject to ED and what can we do to rehab that function. I explained I had experienced some firmess and lengthening with considerable effort though I wouldn't call it anywhere near sufficient to do the job. Maybe a 3-4 on scale of one to 10 but that was only after I added another 10 mg to my daily 5 mg tadalifil regimen. I asked if that was ok and he said be careful with low blood pressure, but I got an odd feeling that he wasn't interested in my outcome in that arena.

So, I guess I should be happy with the PSA level and real good progress doing the Kegals, but although he doesn't seem to be concerned with E function, I damn sure am. Should I consider looking for another Urologist to follow up on that or is there value in sticking with the guys that dissected me?

[Tall_Allen]

You should talk to a urologist who will put you on a more rigorous penile rehab program including pumping ed meds, and trimix. Improvement of erectile function and continence can continue for some time with supportive therapy. You might want to read this book: Saving Your Sex Life by John Mulhall

[dadzone43]

Tall Allen's advice is sound. As to the search for a urologist who actually wants to talk to you about erectile function -- well, good luck. It is ironic to me that the medical specialty that has the most to do with the genitals and genital function is so uncomfortable talking to patients about it. I got more out of a conversation with the female urologist at the Men's Health Program at my local hospital than from five visits with the other one. The other one is a cold fish type. I expect he is a good surgeon but prefers his patients asleep. He does good work on penile implants according to two men in my support group.

So--

get a pump and use it as often as you can. I am not good enough at this either with re-

membering to use it every day

try tri-mix gel. I did not have a very good time with it; in fact I was glad when the trial

was over. My reaction was unusually strong with genuine pain in the perineal area.

Surgeon preferred "discomfort" but I quickly corrected that language and told him

him I knew the difference

masturbate. It helps to remember why you are putting yourself through all this and the

pleasure is not what you remember but it is still good

continue with low-dose medications to promote blood flow. You are waiting for the

nerves to come back on line. Maybe they will, maybe they won't, maybe they will

partially. I am a skeptic about "nerve sparing" surgery and think that the urologists

use this notion to allow them to forgive themselves for what they have to do with us

I am waiting (today actually) for my delivery of Bi-mix injection stuff. The trial run was good.

I did not do penetrative sex before the surgery, so it begs the question. But there is something about the erect phallus that is part of male identity I think.

[fluffyfur]

This article is not recent but we see Dr Wang at MD Anderson for penile rehab. If your uro seems blasé about next steps, I would definitely seek another that specializes in rehab after RP and wants to help urologytimes.com/cosmetic-s...

[cpcohen]

+1 to the previous suggestions.

You need a sexual-function specialist, if you can find one. As said, most urologists are useless in that area.

. Charles

[MNFarmBoy]

Regarding ED and penile rehabilitation, in addition the above, I have the following to offer: The urologist who performed the RP, and the physician's assistant who works with him, recommended use of the VED daily beginning 8 weeks after surgery, in order to avoid loss of elasticity. Being fearful of loss of elasticity (which I believe is what made use of the VED somewhat painful the first week or so), and mindful that the VED is supposed to take the place of nocturnal erections, I am continuing to use the VED daily until & unless nocturnal erections resume, except I take the morning off the day after using TriMix.

Also, I’ve found that I can multi-task, shaving or flossing & brushing my teeth during VED therapy. That also helped alleviate my wife’s concern that I might be enjoying the VED therapy.

I bought a manual VED system from Encore via Amazon (scurry 2 Pack Collapsible... amazon.com/dp/B00RR5PVO6?re...) which has worked fairly well over the ~12 months that I've had it, although the pump seems to require more strokes than when it was new.

Beware what the VED sales folks might try to push onto you: The medical group arranged for a session with a representative from Timm for their PTV and Osborn systems. She agreed that they would submit to my insurance the Osborn ErecAid Classic ($159), which appeared good enough for me. However, when their central sales rep finally followed up with me ~2 weeks later, she told me that the only device they would submit to insurance was the ~$299 system with battery-powered pump. I was especially irritated that their delay in replying to me was delaying start of its use, so I searched the web and Amazon and settled on the one described above.

We are also using TriMix penile injections successfully. The recommended frequency for TriMix that I received is no more than 3 times per week, and also no more than once every 2 days. Of course, I don't enjoy the mild pain and discomfort from sticking a hypodermic needle into my dick, but for me that is a small price to pay for the ability to have intercourse. The monetary cost for me (central U.S.A.) amounts to ~7 USD/use, including the single-use syringe and needle. I understand that use of TriMix and similar entails risk of e.g. Peyronie's disease and possibly other side-effects, but I have no indication of any so far. Also, it seems like, due to e.g. scar tissue from the needle, there might be an ultimate limit to the number of injections that one could ultimately tolerate, which it seems likely to be associated with the risk of Peyrones syndrome.

Best wishes!