I first logged in around the beginning of June after being diagnosed. There's been a long interruption. First I went ahead with hip replacement as planned, on July 27. I'd originally decided to wait for the prostatectomy so as not to have two consecutive surgeries, but then I ended up having a Da Vinci procedure on Sept. 20. I got the results of the first post-op PSA yesterday, which was 0. So that's good. The prognosis for continence seems good, though I haven't mastered it yet, by any means. The sexual prognosis isn't optimistic, since the prostate was enlarged and the majority of the nerves apparently were embedded in it, so I lost them. Since the surgery there's been virtually no response to direct stimulation of the penis, though I have slight nighttime erections and two that were somewhat more substantial, though nowhere near usable. I've been told by the surgeon not to expect much for the first three months, anyway. He recommends using a vacuum pump just to kind of exercise the poor guy, even if I don't choose to go that route for sex.
One question is what sort of pump to use. The surgeon recommends going to a sex shop, since I can get a product that's as effective as the medical type but much cheaper. Any recommended brands or styles? My wife and I have decided to call it a field trip.
I'm sure many have had this experience, of expecting more nerve survival and then feeling as if the rug has been pulled out from under us. I've had the depression and anger. Fortunately, I have work I like to keep me occupied, and my wife is terrific. We've had some sexual fooling around, enough to confirm that both of us still can have orgasms.
I guess I'm asking if people have suggestions on how to deal with this change of life. Realistically, the odds against regaining potency don't look great. Is there anything that give me a better chance? The various drugs? the injections? Exercises? Mystical incantations?
Thank you.

KMC51,

Read Tamu and Swimom's threads on E.D. 
There are many more threads and posters on this topic but I can't recall who started which thread.
Scroll down to the third or fourth post on the "....Helpful Hints" thread at the top of this page.
Our Moderators (Bluebird and Idaho) keep informative threads indexed there by topic.
Just point and click....

The main thing I point out is that most patients don't get usable erections without PDE5's (like Viagra), Vacuum Pumps, and/or injections until one to two years have gone by.

Using these things statistically improves the time required to achieve erection function.
They also provide therapy to the tissues in the meantime as nerves heal and trauma subsides.  Most of what I read suggests you create an erection one way or another once a week until your function returns.  It prevents peyronies and stimulates both tissues and nerves.
I also read that those who use injections get their function back, as a rule, sooner than those just using pumps and PDE5's.

Boy, I hear ya . . . Most of the advice you'll see on this forum, and echoed by my dr certainly, is patience, patience, and more patience. The fact that you're getting even some degree of natural erections suggest to me that some nerves are still present and beginning to regenerate. Cedar's correct that it takes a lonnnggg time for nerves to heal. My dr told me not to expect much of anything in the first 3 months, and then very slow, gradual improvement over the next 12-18 months. Some guys are luckier and recover much more quickly, but that's pretty rare. Good luck!

---

Puget

http://www.rejoynstore.com/impepu.html

Rediscovering what works can be an adventure.

---

Age: 57 (49 when diagnosed)

The fact that you are getting anything resembling an erection after just six weeks is very good.  I don't recall seeing your age, but it can make a difference.  If you are in your forties rather than your sixties there is a good chance that things will get working.

I had very little response early on, and used a pump with Viagra.  It was awkward and uncomfortable, so I was glad when I moved on to Caverject injections. I am still fine tuning. I see some response now without the chemical or mechanical help and hope the future will be looking up.

You can buy a pump online for about $60.Shopping.com lists recreational pumps from about $25.  The high priced model is $300 or $400, but it can be prescribed by your urologist and paid for in some cases by insurance.  Thus the much higher price.Check on line, I think mine was an Encore.  Happily I am not using it any more.  Use the Viagra regularly. It helps to keep things doing there thing.  If your insurance won't pay for Viagra you can get a generic from "All Say Chemist" an online pharmacy located in India.  There product is good. www.alldaychemist.com

 

Talking about the pump. My surgeon scheduled me an appointment with the rep who handles Response II from SomaTherapy-ED By Augusta Medical Systems Augusta, GA. Their web site is www.augustams.com It can only be purchased by prescription. The unit costs about $515. Medicare or Medicaid covers 80% and my supplement paid the rest. I wasn't out anything except the trip to the appointment. The company rep had some suggestions to follow and the literature with the unit backed his words. The booklet said to use the unit 5 to 7 times each week for several months. The idea is to get the penis back to accepting blood in quantity so every thing will get back on line. My surgery removed most of the nerves and I was told it might be 10 to 12 months until ED is not a problem. This said I am starting to use the pump and can see that it does get the blood pulled in. It is working. Good Luck and God Bless, Uncle Dan

---

Age 67
No symptoms, DRE negative, 10 - 06 PSA 5.44, 01 - 07 PSA 6.47
5 - 07 CT and Bone scans negative, 05 - 07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08 - 14 Dr. Dasari - Baptist Hospital, Nashville da Vinci RAP, five hours surgery
Some right nerve and all left nerve removed,
Hospital discharged 8 - 16
Pathology report Negative margins, Encapsulated, 50% left side
Lymph nodes 2 R & 1 L - Negative, R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
9 - 26 Great PSA 0.000, 9 - 27 Starting on meds for ED
10 15 Dry most of the time, occasional leak (dribble )
Viagra no help yet, will try Lavitra ?

KMC51,

Sounds to me that you are really motivated to get back into quality sexual intercourse. If this is true then you are a good candidate for injections. It takes a certain level of motivation to get pass the fear and anxiety of injecting you penis. Injections work whether or not the nerves were spared. You can try the pump and it is good for rehab but if you are like a lot of us on the forum the erection produced by the pump, while providing for penetration, just does not have the closeness to a natural erection as what you get with injections. My suggestion would be to get a pump of some kind and start using it everyday for rehab and intercourse if you so desire. If you have insurance they will pay for a prescribed model. In my case they paid 80% of the Vacurect pump I bought. You should discuss injections with your urologist. There have been a few cases on the forum where the urologist never discussed penile rehab or injections with the patient. The threads here on injections have a lot of good information and you can search the internet and find more. Properly done injections are nearly 100% effective.

Tamu

---

Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3

I think I lost my reply looking for the Helpful Hints. Anyway, thanks to everyone for your advice and experience. It makes me more hopeful. I'm 56, by the way.
While I'm at it, I have some questions about kegeling for continence. One source said to practice stopping during urination and holding for 10 seconds or so, so that's what I did for the first four weeks. The urologist just told me not to do that, but to kegel at other times. I think it was Walsh's book that said too much of this can make the muscle tired and lead to leaking. I suppose it varies from person to person, but is there any consensus about the best approach?
Thanks again.

I haven't been able to find that Helpful Hints thread.
Thanks.

KMC51,

The Helpful Hints Thread is actually at the top of each page.  For example, at the top of this very page where we find your thread.
It is the second (shaded sort-of yellow) "Thread" and it is actually called

Prostrate Cancer Resources, Helpful Hints, and Topic Thread Links

After you open the thread, you need to scroll down several posts to get to the index of topics.

As for the Kegel question, stopping the stream is one of the best ways to isolate the muscles for kegel exercises - Kegel exercises to be done while not urinating.  (I still do them all the time....)
One of my favorites is to stand over the toilette with a full bladder and cough and see if you can keep from leaking.....
The argument against doing the "urine stream stop exercise," after you have isolated the muscles - is that this flexing confuses the unconsciously controlled valve at the base of the bladder that your kegel sphincter is supporting.  The kegel muscles are not a vice-grip, but rather a "muscle tone" of many many pelvic floor muscles that are recruited in a coordinated effort/pattern/frequency -  to avoid fatigue and jump in to close the urethra and aid the bladder valve that opens and closes - more by your suggestion than command........
It is an art, like riding a bike that cannot be learned theoretically!

Thanks for your question on E.D.
The responses you received helped me a lot as I need motivation to take the time to work on these tissues.

C^Cedar
ICTHUS!

Cedar/Icthus,
Thanks for the clarification of the kegeling. I've been researching on-line, and it's not as simple as the urologist makes it sound. I think I have a basic hang of it, but it's probably not as precise as it could be. That was an elegant explanation, by the way.

I also am having problems with this kegel thing.  So far "doing a kegel" seems to make the urine come out instead of stopping it.  Maybe it just takes time.  Also, I had no nerve damage and have reason to believe at this point (about 3 weeks post surgery) that I will be functioning ok sexually, but you asked about an inexpensive source for a pump.  I have no idea if they are any good, but the following site advertises pumps at $25-$30:  Xandria.com.  I hope that this doesn't violate any rules, but feel free to delete it if it does.

I found good, specific info about kegeling online and also through the Helpful Hints entry, Sex and Incontinence, under the ED heading.

I would highly recomend having your Dr. refer you to a Physical Therapist that specalizes in bio-Feedback to treat incontenance.

I did not find mine untill about 6 months post op.  She now thinks alot of my problem is that my hip area muscles are too tight and the do not let the pelvic floor muscles pull upward to support the bladder like they should.  I have been gaining streingth and tone.  Only a slight improvement with the leaking.

 

 

 Hi ~  again.....KMC51  & Loved Ones…

  Hey ~ KMC,

Glad to see you're back.... The forum has grown tremendously over the past year so I'm so thankful you touched back base with all of us.  You definitely have had a busy schedule and now to know you are recovering is wonderful on both the hip and pc surgeries.

 

I've recently updated our Welcome Message...  It will help make things a little easier for you to navigate.  You can copy and past the links into a WORD document and save it on your computer.  Then when you need to look something up you have it at your fingertips.

 

Glad you’re back…. Stay close!  In Friendship ~ Lee & Buddy

---

mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)

Partial quote from above:

   Copied postings to help keep KMC51’s journey together…

 

11-12-07  Quote from KMC51's thread with no subject/title… (No Subject)