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Posted 2/17/2010 12:17 AM (GMT 0)
One of the things I think new patients like myself would love to hear is how the patients who have had more time since the surgery are doing. Status updates help.  Here is mine:

Three weeks exactly since my robotic surgery. I am 52 years old, 4.4 psa,  3+3 Gleason. Leakage is as bad as it was from the first moment the catherer was removed.  I am wearing several pads a day.  I stopped doing the Kegel exercises because I found that when I did them, I would get blood in my urine.  I wouldn't have blood otherwise.  I figured I better let my body heal first.

An erection is not even on the radar. However, I had an orgasm today.  I had a hard time believing that it was possible to have an orgasm without an erection, but it is.  I started self stimulating with the right hand and, per my doctor's suggestion, stimulated the tip of my penis with the left hand.  It wasn't intense but it was pleasurable.

I am hoping the leaking improves...soon.  I can't see the light at the end of the tunnel and it is scary.

Posted 2/17/2010 12:57 AM (GMT 0)
Runer,

You are so very soon out of surgery, and major surgery at that. Sounds like you are doing pretty good so far. I think you are wise to stopping the Kegels for now, if they make you bleed when you do them. There is a lot of internal healing that is going on right now, and it is important to let your body heal naturally too.

Good luck to you,

David in SC
Posted 2/17/2010 2:38 AM (GMT 0)
Runer,

 Hang in there. Its still very early recovery stage. I know 3 weeks seems like a long time,but you have to be patient. At times i thought i might be wet forever, and then 1 day about 3 months out i noticed ahuge improvement. When it happens you will start to feel normal agian....turner

 

Posted 2/17/2010 3:09 AM (GMT 0)
Runer,

I can't begin to tell you the number of individuals that I have discussed the orgasm without erection issue with, and that they were amazed that that could even occur. And several weeks after my surgery (May 04,2009) I discovered that it can and does occur. Now, 10 months post-surgery, and still no erectile function, I continue to have orgasms without erection. They are very strange in feeling, and I can't even begin to describe where they actually originate from, and at times are somewhat painful. There is a element of pleasure with it, but it is not anywhere like the intensity or pleasure that occured before surgery.

Your leakage will hopefully resolve soon, I know that mine did a few weeks after surgery, however there are still times that the dribbling occurs unexpectedly, catching my quite by surprise.

Here hoping that your urine leakage will resolve within a short amount of time.
Dallas
Posted 2/17/2010 3:21 AM (GMT 0)
Yes, hang in there.  Penil rehab was not even a concept in '93, so it was over 1 1/2 years before the Dr agreed, after my questioning, to a pump.  By that time, damage was done (shrinkage, scare tissue no longer elastic, etc.).  Yes, the floppy orgasms are tough in that it takes forever, but the feeling is still there!!!
Posted 2/19/2010 2:01 AM (GMT 0)
Thank you all for taking the time to respond.  Sometimes it feels good just to know that someone who understands what you are going through is out there listening and taking the time to respond.  I don't know any of you and I already feel a sense camaraderie.

It is encouraging to hear that for the most part, the leaking improves considerably in a few months.  It sounds like ED continues to be a problem for just about everyone.  That is disappointing. I had excellent erections prior  to surgery and would be thrilled to have one that was half of what it was which should be enough for penetration, without the need for injections which I fear like the plague, no, worse than the plague.

Posted 2/19/2010 4:23 AM (GMT 0)
Runer: has you Dr. started you one any of the ED pills. Viagra, Lavitra or Cialis. Many start patients as soon as the Cath is removed.

Jeff T
Cajun Country
Posted 2/19/2010 12:26 PM (GMT 0)
Runer,
Yahoo! Glad you had an orgasm - and I'm glad to hear another doctor allowing some stimulation earlier than 6 weeks after surgery. It will only help things heal...and help you mentally. My surgeon told me to JO every day - good for blood flow, nerve healing and my heart!

You have lots of options with the ED. Orgasms will improve, even limp ones. It improves in plateaus - like everything in PCa. Include your email in your profile, would you?
Paul
Posted 2/19/2010 4:41 PM (GMT 0)
Well, it's all a bit odd, but at the end of the day, better a limp orgasm than none at all. I only waited 1 week! And honestly, it hurt like heck...pain and pleasure has never been my thing, but never the less, it was only a day before I did it again, and again...

The good news is that here I am almost 3 years past surgery, and well, with Levitra I achieve a good response and so I can choose...efficient orgasm without erection if I don't take the meds, or a more normal one if I choose to take the meds. It all depends on whether I'm going at it alone or my wife :)

Amazing that we have this Forum to discuss. Who would have ever thought...
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