Surgery tomorrow

MK1965 said:

Incontinece

Very bothersome incontinece at 5 weeks post catheter removal and I did not make much progress if at all. Still wetting pads and pull ups especially when standing and walking. While walking, I can not keep any urine in my bladder. Everything goes into pad and pull ups. I am doing Kegels as I was instructed but I am not making any progres. I am wondering when I should start seeing some progress with incontinec. Some guys were already dry by 3, 4 or 5 weeks after cath was remove.

I am still completely numb in my penis and perineal area. No feelings at all. I am not on any meds for ED and my urologist does not have any plans for that proble. I will be seeing him on December 22 for my first post op PSA.

Should I ask for something at 7 weeks post op or still is to early to sta penile rehab?

MK

Spectrum

MK,

I would say your progress in some ways is toward the slower end of the spectrum for men post-RP, but not a diaster or necessarily indicative of permanent, terrible problems.

My pelvic area was wholly and totally numb for at least two months, and feeling returned gradually, not rapidly. But I think it was numb longer than two months, I just cannot recall.

I also cannot recall when I first tested for sex in the urologist's office, but it was probably around three months.  I began a compounded drug known as TRIMIX.  Trimix is a mixture of three vascular dialators, given via a tiny needle, either self-administered or your wife can do it.  I was told the needle is about the size of the ones used by diabetics into their stomachs, but I am unfamiliar.  The needle insertion was not painful for me.  It was first administered as a test and for training by the RN.  Despite a totally numb groin area and totally numb penis, I had an erection within 10 minutes, and it lasted about 3.5 hours, or almost up to the traditioanl "4 Hour Warning" period.  The doctor had me get Benadryl on the way home in case the erection did last too long, and I began taking those at about the three hour point.  Via self-injection it never failed to work, and we were having decent -- not great-- sex two days later (Trimix cannot be administered in two consecutive days; you must take a break of at least 48 hours).

You will be trained on needle placement. It is easy to "miss" and insert into the urethrea instead, but this is not a problem or dangerous in any way. You will just urinate the med out, but will have to wait till the next day to reinsert the needle.  I did miss once, and the RN told me it was no issue at all.

TRIMIX is about 80% effective, even in men who have total E..D.  It is many, many times more powerful than Viagra or Cialias.  Trimix will give a good erection in men who get no response from Viagra, but Trimix is not 100% effective, just close to it.  It is not available at most big box drug stores.  You must buy it at a compounding pharmacy -- one with a pharmacist who grinds and mixes stuff the old way.  This is mostly because the drug must be refrigirated, and has a shelf life of only about 30 days I believe.

I later transitioned to Cialias for many months, but today, two years post-surgery, do not even require Cialias for good, spontaneous response.

Ask your doc if it is too soon for Trimix or not if you are interested.  I recall it not being too expensive, and way cheaper than Cialias.

You did not meniton pain this time, so I hope that the pain is over now.  As to the urinary issues, they usually better, but that can be slow also. I wish you progress on all fronts,

max

Info on Trimix. I am not recommending this pharmacy, just using it for information.  Any town of any size will have a local pharmacy who can compound this for you after you get trained and a perscription

http://zionpharmacy.com/trimix-injection-solution/

 

.

 

MK1965 said:

No feeling in penis and perineum

I am now 9+ weeks post op and I still do not have any feeling in my penis and perineum. My wife and I are trying manual stimulating but I do not feel her hand on my penis at all. About week and a half ago, I started taking 5 mg Cialis daily but nothing happens so far in that area. I still have complete flat tire with zero response to manual stimulations. Was not able to have orgasm so far. I know it is possible to have an orgasam with flaccid penis but it is almost impossible to stimulate penis when it is totaly soft.

On my visit with my urologist surgoon on December 22, I told him about complete lack of feeling in penis and perineum area after RP, he was not concearned at all and just nonchalantly said "No worry, it will come" 

i saw few others mentioned about this problem but wondering when I should start feeling when penis being touched and stimulate? Really wondering if this sound normal and familiar to others after RP?

Sterted worrying about this lack of feelin and suspect he messed up some other nerves responsible for sensation in the area. 

As for incontinece, it improved somewhat but still need one par of pull ups daily. Leaking around 50 ml daily. Catheter removed on November 10th. Hope to keep improvin.

 

MK

Agree with doc

Mike,

I know that I am being somewhat redundant here, but you asked for feedback regarding your still-numb pelvic area/penis.  Also, I write every response to every question as what the English philosopher John Locke called a Tabula rasa : a blank slate.  That is, a new beginning point. These Boards are so poorlly organized that it is impossible to know, and unreasonable to assume, that any reader has ever read anything that a given respondent contributes (unless perhaps the responses were in the same thread, but even then, these become so unwieldy that it cannot be assumed that what was written a few months before has been read by new arrivals).   For guys who have read every post that I ever wrote over these years at PCa, my apologies, for it must seem very old-hat: predictable. (This is even much more so at Lymphoma, where most of my posts have been written.) 

The same is true for me as a reader:  When this-or-that guys begins to explicate this-or-that, I know pretty well exactly what they are going to dissertate on, and will usually not read the post.   But bless all for their contributions.  It is priceless and insightful with each iteration.

My pelvic region was numb/sensationless at least as long as your's has now been. I initially used injection Trimix, not Cialias. Trimix worked well for erections, even when the penis remained numb.  I learned that three functions are essentially independent processes in men's sexual performance, although young guys who have never had imparement or never studied the issue would not know:   Erection, orgasam, and ejaculation.  Ejaculation post-RP of course is history, but men with normal prostates sometimes experience these "dry orgasams."  Male orgasam is independent of erection (as you noted), as is often (but not always) the case with "nocturnal eruption."  Erection is the main issue at present for you.  The brain ties these three processes together in a "normal" sexual episode, bu they are separable.

Three years post-DaVinci, I have normal funtion, with no Cialias.  This has been the case for at least a year, but I was having good sex long before with Cialias. It is reasonable to believe that you will get there.

Thirty years ago, I was run over by a car, crushed, and in an ICU for 25 days before beginning two years of rehab, learning to stand, walk, and speak again (Profound oxygen depravation [I was dark-purple in the E.R.] gave me organic brain injury, which made saying more than a word or two difficult for a long time, and I had no short-term memory at all.  The lead respriatory therapist at that hospital told me later, months after I was discharged, that my arterial blood gasses "did not indicate life" (in other words, levels they would expect on someone actively dying, about to pass).  But I later fought back and managed to take degrees and learn a foreign language with with highest honors.)  

Because my femur was broken at the hip socket, and again at mid-thigh, I had surgery on the side of the hip to insert a rod and wire together the hip itself. The incision is one foot long.  This caused profound pelvic numbness for at least a year.  The only doctor I was seeing after my seven weeks in the hospital was the orthopedic surgeon, and he gave me the exact same reply that you received: "It will return."   What was most discomforting was that he had no idea what was causing the numbness.  My UT was not operated on at all, bit tp mobilize my left leg, I was on a  PMD "passive motion device."  One of the positioning devices for the PMMD was crammed in to my groin for weeks, and I believe this was a factor, but will never be able to confim.

After my DaVinci, I related this experience following the wreck to my urological surgeon, and asked him what the problem likely had been decades before. He replied that he had no idea either, but most likely it was the morphine that I was on for 24 days during the ICU time.  

I was totally impotent and numb from the wreck, as I said, for about a year then (much longer than following the RPt).   And I had no form of support, no drugs. The current ED drugs were not invented until years later.  But things returned to normal.

I would not distress over this situation at your amount of time thus far post-op. I recall that you had much worse than normal post-op pain, which thankfully seems to have passed. This will pass as well... I know it is worrisome and a cause for reasonable anger.    I had clinical depression from middle school, annd back then, most psychiatrists did not consider clinical deppression possible for someone my age.   But in the late 80's I devised a joke about myself: 

"I was depressed, then I got run over by a car."  Perhaps a person would have to like Rodney Dangerfield to get it....   Later I changed it to, "I was depressed, then I got advanced lymphoma."  Then I changed it to, "I was depressed, then I got a secondary cancer."  Today, I am just finishing following a tumor in the right lung, although it is extremely likely benign....my cancers have not been associated diseases, no form of metastasis.

Each was a Tabula rase : A new beginning.

When life dumps on you, you just have to get a shovel and go back to work.  Watch a YouTube of the Pretender's hit song Chain Gang: It depicts the life of humanity.   But with the right values, a man can be happy in any circumstances.  When in the submarine force, we used to "go North," above Siberia.  Of course, I will never be ablt to say when, or exactly where, or why.  But in Scotland one day, just before "going north," I bought a copy of Aleksandar Solzhenitsyn's classic depiction of the Soviet Gulag.  I read it while on that deployment. Despite torture and most men freezind to death, Solzheniitsyn noted tham many of his friends there were never broken, never lost hope.  Utterly amazing, seemingly impossible.

I never felt happier in my life than when on chemo, watching the bags drip all day long, or decades earlier, when the ICU RN would bring my liquid food for the day in in a green bag, and hanging it on the IV tree.  She always cheerfully said, "Here's dinner !"  I knew these things represented what could be, rather than what was in the moment,

max

MK1965 said:

No feeling in penis and perineum

I am now 9+ weeks post op and I still do not have any feeling in my penis and perineum. My wife and I are trying manual stimulating but I do not feel her hand on my penis at all. About week and a half ago, I started taking 5 mg Cialis daily but nothing happens so far in that area. I still have complete flat tire with zero response to manual stimulations. Was not able to have orgasm so far. I know it is possible to have an orgasam with flaccid penis but it is almost impossible to stimulate penis when it is totaly soft.

On my visit with my urologist surgoon on December 22, I told him about complete lack of feeling in penis and perineum area after RP, he was not concearned at all and just nonchalantly said "No worry, it will come" 

i saw few others mentioned about this problem but wondering when I should start feeling when penis being touched and stimulate? Really wondering if this sound normal and familiar to others after RP?

Sterted worrying about this lack of feelin and suspect he messed up some other nerves responsible for sensation in the area. 

As for incontinece, it improved somewhat but still need one par of pull ups daily. Leaking around 50 ml daily. Catheter removed on November 10th. Hope to keep improvin.

 

MK

Use it or loss it

PDE-5 (phosphodiesterase) inhibitors such as cialis is appropropriate....Although I am unable to find thr study now, I remember having read a study where 10mg daily cialis is recommended for recovery.....you may wish to researchand confirm this....

It is important for you, or you and your wife to manipulate, and also use a vacuum pump......do this very frequently,, for sexual performance and pemile length rehabilitation..... not doing anything can cause permanent ED.

After a time you may wish to consult with a doctor who speciaizes in sexual function....there are various strategies that can be done to include injection to penis, penile implant, etc.

Please be aware that recovery of sexual function, is age dependent at time of surgery, so a younger man has a better chance of recovery than an older man.

 

http://www.harvardprostateknowledge.org/new-options-for-treating-erectile-dysfunction

What is really important

I am sorry that your recovery is taking longer than average. I have read that it may take as long as a year to fully recover from prostate surgery. But the important question is whether the operation itself removed all of the tumor(s). As Vasco just wrote, the PSA test result should tell. I hope that that result will give you something positive to smile about.

Accepting your newer you

MK,

I also believe that you are experiencing stress. The status could have started at the occasion your doctor told you've cancer. You may think that you did accept positively the diagnosis at the time but you did not realize of the complications involved (it happens to all of us). In fact your mind never freed itself from the worries of the unknown. Along the four months each event is also sinking you deeper, making you to feel down and seeing your life going from a natural state to the unnatural that you never though it to exist.
This is all new to you and causing you distress. You need mental rehabilitation to start accepting your newer you.

I do not think that drugs will pull you up and out from the problems or the deep depression. You need to use your mind to rehabilitate your mental status. Any thing you do with pills or pumps or etc, to get a quick fix will never work if mentally you are not prepared to accept the facts totally.

In any case do not think that it is only you. We survivours in this forum all have experienced similar moments. Each one reached to a solution at their own way. Not doctors but family or a very close friend is the best companion to overcome the situation.
Along my 17 years of PCa related events, I found that knowing in advance what to expect has given me that peace of mind so necessary to accept things. I spend many hours researching and try being in pair with the newer medical discoveries/inventions on prostate cancer. Many get involved in hobbies they find to like and entertain their minds for hours. Joining a gym, meeting group of people away from PCa, walks, the thrill of a Harley-Davidson country trip, or meditation sections (yoga) with a tutor, etc, these all I have seen here being posted.

Just try something you like very much to do and go for it. That will create your Willpower.

Best,

VGama