New Member....alive, but not particularly happy post RP

Hi..

I've read through some of the posts and hope this is acceptable as far as my introducing myself. I don't have all of the incredible detail that many of you post in your sig lines regarding your pre and post op status, but I will share what I do know.

But to the point, I had nerve sparing radical prostatectomy on 10/7/2013, just a bit over 3 weeks ago. I had an out of the blue abnormal PSA in April of this year of 6.x. Another in June of 10 prompted a biopsy. 1 of 12 was positive and the urologist strongly suggested RP. I'm 62.

Surgery was a success as far as removal of the prostate and finding no more cancer and clear path report on lymph nodes, in all, good. But now, as many of you, if feel like half a man. Prior to PC I had ED, but it was eminently and successfully treated with 50 mg Viagra. My partner does have vaginal orgasms and intercourse with an erect penis was a joy for both of us. It was all we did, but it was generally the climax (no pun intended) of our love making.

Granted, it's very early on, but the situation seems so incredibly hopeless now. Viagra has no effect at all. I can ********* to orgasm alone with difficulty, but the inevitable 'urine' ejaculate instead of what used to be there or even totally dry is fairly disgusting and nothing I want to subject her to. At the moment I am experimenting to see where I am. We are not to the point (I as much as anything for fear of predictable failure to get an erection) of trying to do anything as a couple. She knows of my sort of depression over this, but does not know of my experimentation and poor, pathetic results. She is supportive, caring and all I could ask for, but that almost hurts more to know that she cares so much and I cannot even come close to doing what we used to enjoy.

Predictably many of you will say that it's too soon and/or that there are other ways to be intimate than with an erect penis and intercourse. That's all well and good, but it doesn't make me feel one iota better, nor change my depressing outlook. At the moment, while glad to be alive, perhaps I would indeed trade off just living what time I would have had left in happiness and sexual peace rather than to feel the way I do now.

So, my two cents. Probably nothing so many of haven't heard before, but trust me, it's very new and very unsatisfactory to me.

Regards,
FJ

If you don't mind my saying so (and only for the purposes of giving you a "pep talk"), you are reacting in a very misguided manner.

It is almost silly to be reacting this way when you are barely more than 21 days post-surgery. You have a LOT of healing to do from the surgical site -- as well as from the nerve trauma. Just the act of TOUCHING the nerves is damaging to them, so you can imagine the trauma involved in prying them off the prostate surface and repositioning them.

This has been compared to laying for a long time on your arm and then finding that it has fallen asleep. It is not very functional for a while -- until the circulation, etc., begins working its way back. Same with the nerves -- the surgery kind of puts them into a coma.

They WILL come back, but it can take anywhere from a few months to a couple of years. But they SHOULD come back if you had good, nerve-sparing surgery.

But to jump right back into a bed -- at a time when you should just now be making your first attempts at sexual stimulation -- and expect to immediately begin performing as always is not reasonable.

As for the ejaculations of urine, this just demonstrates what I said up above. Healing is still underway. Believe it or not, the urine WILL disappear from your orgasms in the future. It takes different rates of time for each person, but it WILL go away.

EDIT: I just noticed that you DID have ED prior to the surgery. This means that your future erections will probably not be as good as however they were before the operation. But you will hopefully find enough improvement as your healing continues. Did you have BPH? Having ED is one of the potential side effects of BPH. I know because it happened to me.

In the meantime, you are NOT half a man. You are every bit as much of a man now as before the surgery. Just because a baseball player is on the disabled list, it does not mean he is only half a ball player. He remains a ballplayer who is just temporarily out of action.

Also remember that the surgery has 3 main goals, in this exact order:
1- cancer control
2- urine controle
3- sexual function.

You must work on being much more patient and you will hopefully score on ALL THREE goals. You'll find that things will be much improved at 3 months -- much different than a mere 3 weeks.

Hang in there & you will be just fine.
Chuck :)

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Pathology showed Gleason 3 + 3, pT2c, N0, MX, R1
adenocarcinoma of the prostate.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, 9/9/13 PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.

Post Edited (HighlanderCFH) : 10/29/2013 10:39:06 PM (GMT-6)

You're right! Most of us are just gonna say 'Way too soon!". Your body is still healing. I don't want to deny your feelings or your fears, but you are way ahead of many guys in your recovery and should expect to keep improving. And you have a loving partner. You're a lucky dude and i'll bet your luck keeps improving!
Mikey

Dear DrDeputy, welcome to Healing Well. Sorry you have to be here but there are lots of caring folks here with great knowledge.

It's ok to vent and many here understand your frustration. I hope with time things will get better for you.

Jim

FJ: Time and kegels will help the urine leaking. Time will help the ED, but meanwhile injections (sounds worse than it is) is the answer for good erections. You should talk with your surgeon or urologist.

Do yourself a favor and immediately visit the links in my signature below for Dr. Mulhall's youtube videos and book. They (especially the book) will help you understand exactly what you are experiencing and what you can do about it.

-Gedman

Thank you all for your thoughts, guidance, support and recommendations. Yes, I know, too soon. I guess I was venting at the frustration of it all as much as anything and ignoring the long healing and seemingly endless waiting one must endure.

BTW, I have had my first post-op PSA and it was in the .005 range or similar, essentially zero they said. So again, not wishing to look a gift horse in the mouth and complain about being hanged with a new rope, but still it does seem like tomorrow is a long, long time (to borrow a phrase from a song).

My next checkup with the surgeon is Nov 18th, which will be exactly 6 weeks post op. He had previously offered daily Cialis as a sort of rehabilitation routine, but had no samples, said perhaps next time. He had also mentioned a pump, very casually as if an afterthought. I don't know if his interest in my post op sexual rehabilitation is minimal or if he's just downplaying it as being 'too soon'. I intend to ask more pointed questions now that I'm squarely in the 'this phase' and not dealing with it so well. As to his pre-op explanations of what to expect, yes I recorded the whole conversation, about 90 minutes worth of it, and while he did pretty much explain it all, he minimized it to the point that made it sound insignificant. And by 'it' I mean the reality of the incontinence, the loss of sexual function and such. I'd say his talk was about 85% on how this would get rid of the cancer and allow me to live on and 15% on what's left of me as a person to live the life I have left. I'm going to bring up what I see as his 'less than forthcoming' approach when we talk again next month.

Oh, I do have a question. Since the reality the ED of post PC RP is quite different that ED for other reasons, I wonder if insurance companies cover the cost of meds differently. It was almost a joke before, covering a few pills at a reduced rate, as if more of a 'recreational' drug than a needed one. Anyone find a change after surgery in coverage? I mean covering 5 Cialis a month if he wants me to take them every single day is a joke. And he made no mention of any injections of any sort. Granted it sounds scary, but more than one of you mention it not being a big deal and being quite successful. Curious about that.

So again, thank you all and I will report back from time to time and perhaps I can take on the role at some point of helping others, but at the moment, I'm selfishly trying to help myself. :)

FJ

First, let me echo the recommendation that you watch the Mulhall videos and buy his book. (It's a bit tricky to find a paper copy in stores but Amazon can hook you up, especially if you have a Kindle.) Different doctors start penile rehab at different points in the process. After you read Mulhall's book, feel free to push your doctor to be aggressive.

You are a bit ahead of the curve on one point. Most surgical patients don't get quite so depressed and angry for another month or two. You will find that penile rehab will help you not be so depressed. It gives you something to do -- something you can work on -- and will help you feel like you deserve to get better because you are doing what you can to fix the problem. It does improve your outcome and speed up the recovery process, but it also helps you not feel so helpless and useless while you wait.

As Mulhall will explain in his book and video, once you start your rehab you will want to try oral meds first and, if they don't work quickly and well, you will fairly quickly want to progress to injections. (I am a wimp and I do them. You can too.) It's important to get some well-oxygenated blood into your Johnson and to get it inflated a couple of times a week to keep the stretchy bits stretched so nothing shrinks or shrivels.

Chances are excellent that your leaking a bit of urine will freak you out more than your partner. Nine times out of ten men will recover continence within a year after RP. That tenth guy (a guy like me) may need to seek further treatment to get dry. Make sure you do your Kegel exercises as your surgeon tells you and, if you aren't improving as fast as your doctor tells you to expect, get him to refer you for physical therapy or biofeedback. That helps a lot of men get there faster.

There are some guys who are successful at getting their insurance to cover useful amounts of the PDE5i drugs (Viagra, Cialis, etc.) after surgery but it will take the involvement of your surgeon, letters written, hours arguing on the phone, and all the determination you can muster. But sometimes it can be done.

If you do wind up going the injection route talk to your doctor about "trimix". It is much cheaper than the other injectables, it works better, and is less likely to cause pain.

Good luck. Keep us posted. Feel free to vent. Many of us have been where you are. We understand.

One more thing to ask your doc about is Irbesartan (Avapro) 300 mg daily. My surgeon published a small open label study last year (www.ncbi.nlm.nih.gov/pubmed/23030689) showing fairly compelling apparent benefit for protecting nerves / speeding their recovery post prostatectomy.

It is safe and cheep (its a generic blood pressure medicine), so you probably have nothing to lose...

"Like you, making love to my very pretty wife was what I lived for. I became depressed and I now believe that that depression further dampened my sex drive and abiltiy to get an erection."

Hate this disease.

Welcome back, FJ. I'm glad to hear things are going better for you.

Do talk to your doctor about injections. They do work and a lot of guys find that the injections sometimes help jump-start the natural recovery process.

Incredibly I read a post where some guy asked if his seminal vesicles could be reattached so he could cum again! I guess some folks don't listen to what they are told pre op! Lol
"Hang in there" no pun intended!

Bob

We have lots of guys here with implanted prostheses of various types -- slings and sphincters and penile implants -- why not an artificial seminal vesicle? You could have your choice of "loads" and, like that ice cream company, you could come in 31 flavors.

Drdeputy: Man..you sound just like if felt about 2 years ago after my surgery....very depressed...But now at 2+ years I am just as I was prior to surgery. I had total Ed for over a year, but it does come back to normal for many of us if we just wait for the healing. I would have bet my life that I would never again make love to my wife...But it all changes if you give things time and seek the proper medical advice. To get your best chances for success do all that your dr. recommends including 5 mg. of Cialis daily, a VED (pump), and BiMix injections (that are not bad at all). Many doctors feel that they jump start the process. And find a doctor that is indeed focused on getting your erections back. As my ED doctor told be "we have ways of getting any man an erection if he wants!" This is so true. And most importantly relax...Since the more depressed you become the more difficult it will be to obtain an erection! Good luck.

Bill K. from NJ