Thought I might share some of the attendant and more intimate details surrounding my journey following a visit from the prostate cancer gods, subsequent exorcism, and the fall-out incumbent thereto. Following are excerpts from my journal.
December 16, 2005
I started PSA testing and DREs at age 40 (as recommended by Southern California Kaiser Permanente).
I have an older brother who had prostate cancer, the aggressive type, who died from it within 2 years, after much treatment, including orchiectomy, bladder removal and kidney removal. 71 at the time, in 2003.
My PSA started rising in 2005, age 61; biopsies found PCa (Diagnosis T1C, Gleason 3+3, PSA 5.26, Bone Calcium normal, Bone Scan: lots of osteo-arthritis; no metastases noted). Urologist opined that indications were that the cancer was localized and fully encapsulated in the prostate.
The good Doctor directed me to research treatment options on "the WEB" (just this generalized statement, with zero guidance), and get back to him with my decision. After hours and hours of false starts, arcane articles, contradictory solutions and some really "out there" stuff (over several days), I finally just shut down my computer for a couple of days. My epiphany one morning was this: I had cancer, and I would not be comfortable with continuing to host it; I wanted it GONE. Whatever the consequences!!!
The urologist indicates that the science is not there to ascertain whether my PCa is the slow-growing kind (98%), or the aggressive kind (2%).
I opted for an RRP, since my understanding was that the other treatments (radiation, etc.) so damaged the tissues that subsequent treatment via surgery, if needed, would most likely be precluded.
February 22, 2006
I've explored the option of DaVinci for my surgery, but my Kaiser is still a couple of years away from this technology.
It's interesting, but the thing I consider most is being shaved; I offered to do that myself, but was told that the inevitable nicks and cuts would create a non-sterile field for them doing the incisions, and that I would have to let them do it as part of their prep just before the surgery. That'll certainly be a new experience for me, but guess this is no time for modesty.
The books I've read indicate that the penis is not shortened by the surgery (the bladder is somewhat movable, and is just pulled down to connect the urethra at the base of the penis, the counselors at Kaiser have both indicated that the penis is reported by patients to be shortened by ½ to 1 inch, the doctor who will be doing my surgery says that the penis cannot be shortened because the base is firmly attached and can't be pulled up. (These contradictory notions seem to be the norm for this prostate cancer issue!!!) What really does happen? [In about 50% of cases men report a shortened penis according to some reports - see Minor Side Effects of Surgery]
I'm wondering if the "shortening" has to do with the trauma in the area, and the impact on reduced blood flow to the area, rather than a mechanical result of the surgery? (Guess I'd rather think about that, rather than think about incontinence and impotence.)
I am having "open" RRP (Retropubic Radical Prostatectomy) surgery, on March 3rd. This is clearly the preferred treatment offered by Kaiser, and the one they have thousands of experiences in, at least here locally. I am very comfortable with this solution, at least I've been able to rationalize my acceptance; it will be most interesting to find out where I'm at with acceptance after several months. The counseling sessions with Kaiser seem to emphasize the negative outcomes, rather than the positives; that's a little worrisome, as it may indicate that they experience more negatives than positives, but I've decided that they are just under-promising, so as to ensure that my expectations are modest "in case", and that the probability of good or excellent outcomes is very high.
I don't think I'll take the chance on "pre-trimming", as the gal about came out of her chair when I suggested I'd rather do it myself; her position was that "they would cancel the surgery, and you have to let them do it". Seemed a little overboard to me then, as well as now, but I'll follow their guidelines.
March 05, 2006
Posted by wife Jennie Jo.
WAYNE IS HOME!!! His surgery Friday was successful; surgeons report indicated that he is cancer free now - no sign of anything outside of the prostate, which is gone. He lost more blood than is usual, but they didn't give him his deposited blood, "yet". So I suspect that was saved "in case".
The surgery was 4.5 hours, then he was in recovery for extra time, "because there is a shortage of beds" and ended up in the cardiology unit. He kept setting off the alarms because he'd stop breathing, the monitor would flash this big red box "Apnea Alert!" while the bonging started. I spent several hours watching the monitor and reminding him to breathe when the breathing line went flat for a minute which was quite often. His nurse spent 2.5 hours sitting by his bed watching until it was apparent that I was keeping track and that he was breathing OK for 5 or 6 minutes at a time. What fun. That did clear up finally and he's been fine since Saturday morning. He claims now that I was too rough on him because I'd bump his feet when he didn't respond to "Breathe. Wayne, breathe." I call it just an attention getter, he's loving complaining. He doesn't remember the nurse shaking his shoulder several times when he didn't respond to me. But his blood oxygen didn't ever fall below 70%, and that low only once.
He was up walking early Saturday morning, and repeated ambulation 3 more times during the day. Now that he's home I expect to encourage him to get up often for a stroll as his surgeon said that getting up for 5 minutes every hour would get him recovered the fastest. Just prior to my leaving last night he commented in reference to surgery recovery, "I'm ready for this phase of my life to be over!"
Wayne says he'd rather not entertain anyone right now, but I suggested they could visit with me upstairs while he is downstairs.
March 20, 2006
I'm starting to feel much better, but still have to watch what and how much I do; yesterday went to the zoo for 3 hours (very slow walking), and then to a party. I survived it, but was then ready to sit for all of today.
Got the staples out a week ago, 15 of the suckers, one of which went underground; getting that one out was an experience; still a little tender, but the swelling is rapidly diminishing.
Got the catheter out on Thursday (my Lord, what a relief); when she said: "I want to be sure you can urinate before you leave", I said o.k. Then she said "lay back", hooked up the funnel to the catheter and said "this may be a little cold", and started pouring water INTO ME until no more would go in; then she allowed that some guys are a little bashful about pissing in front of someone, so said she would leave the room. Now, I'm about as exposed as a guy can be, she's holding this catheter straight up in the air with me dangling on the end of it, she says "breathe in through your nose and out through your mouth" and starts pulling out the catheter, seems like there's a yard of that yellow hose in me (but probably only a foot or so), gets it loose, tosses it into the waste container, hands me a bucket, and leaves. Jennie-Jo helps me up, I fill the bucket (absolutely zero control, it's just draining). Knock, Knock; she's back, asking if it's o.k. for her to come back in. Grabs the bucket, measures the volume, pronounces that everything is just peachy-keen, and says I can go.
I have almost total control of urination, no leakage at all in bed overnight (have to get up every few hours), and only a few dribbles a few times a day when I don't pay attention during the days. I expect to be off diapers totally shortly, so I'm much pleased. I've found that Newborn Huggies (the very small diapers) are perfect, very soft and absorbent. I just wrap penis and scrotum inside, adjust to fit, use the diaper's Velcro tabs to hold it all together, and get up and go. It's especially nice at night, since I prefer to sleep nude.
Pubic hair stubble is a bitch, however.
Nothing like a real erection yet, except when I push to have a bowel movement. Have masturbated to orgasm, no erection, and seems to now be a very short orgasmic event, pleasant but a very short "glow" afterwards.
Next up is the meeting with the Urologist, who will tell us about the pathology report, clean/unclean margins, lymph node health, etc.
April 01, 2006
Actually, I'm up and around and even going to the gym; got the catheter out a little over a week ago, not requiring diapers or pads after 4 days. I go to the doctor on the 11th for an assessment on additional treatments, and a determination of the length of my medical leave. Still don't have the stamina I'd like, but expect that to be improving. Initial reports are that the prostate margins were clear (no sign of cancer), so the indication is that all the bad stuff has been removed.
April 04, 2006
Finally back on my feet, at least mostly; doctor says that all indications at this time are that all the cancer was excised successfully, no cancer in the margins, so that's very good. Still don't have the stamina, but expect to have that back over time; after the catheter was taken out, had a very few days only of pissing my shorts so thankfully that part is past; still no erections, with the next treatment next week to start using a vacuum pump to get blood flowing into my penis (ostensibly to convince/remind my penis that blood can actually still flow in and out, sort of remind it that this is normal, and re-learn it to inflate), with an expectation that this too will start working within the next few months.
Started last Friday having a few drops of blood in my urine after bowel movements, even though I am careful not to strain very much; the medical advice is that this is not unusual, and I should be concerned only if there is "a lot of blood"; I did insist on a test to ensure there is no urinary tract infection, but don't have the results back yet.
Tom (a work associate , also with PCa) has been prophylactically prescribed Viagra/Cialis daily. I've only been taking it when I think I/we might get it on, not routinely, and the urologist has suggested that it might still be "too soon" to expect these to be effective. He continues to target 6 weeks as the minimum healing time.
One side effect I've frequently experienced with Viagra/Levitra (I've used Viagra for a couple of years) is some nose/sinus stuffiness and mild "head-achy-ness" for an hour or so: not debilitating, just noticeable. I will ask for a prescription for Cialis as I haven't tried that one yet, so that I can do the comparative analysis on which works best (see how optimistic I am, assuming that they will all work...sometime...).
Pre-surgery, my experience with Viagra was that it was effective for 12-16 hours (if I wanted to be prepared, I'd take a pill before going to bed at night, and it certainly would still be working the next morning even if "used" in the evening).
April 11, 2006
Good news: there was no involvement of the lymph nodes, and the tumor margins were clear (no cancer close to where the cuts were made), so really good news. Had a PSA test, which is expected to measure at less than 0.1 (was 5.26 prior to surgery). Will have the results in a few days; follow-up PSA tests every 3 months for awhile, then at 6 months. Other news is that the original diagnosis of T1C (Tumor, in 1 lobe, Contained within the prostate) was re-graded to T2C (both lobes) as a result of the pathology analysis on the excised tissues; Gleason stayed the same at 6 (3 + 3) - this frequently is found to be higher, so this is good news.
Started on a vacuum pump (have to remind the penis that blood really can flow into it); if erections don't magically happen within a month, then the next treatment is penile injections (I'm told it's a really, really small bore needle, but it still gives me the willies) with meds that cause a serviceable erection (as contrasted with a "stuffable" erection), success rate is about 70%; next treatment would be implants. The doctor did say that using the vacuum device with the restriction bands to maintain an erection was a no-go, as that just numbs the nerves in the penis after a very few minutes, which is not what we want as the nerves could be damaged; so I just pump it up, let it go down, pump it up, let it go down,... The doctor indicated that this can't hurt anything, so it's up to me how often I do it; the intent is to at least return to the pre-surgery size, as well as encourage erections. It may turn out to be easier to maintain the vacuum without the interference of pubic hair (requires a fair amount of goop), so I'm thinking about shaving it off while I go through this process.
I did ask about the efficacy of Viagra/Cialis/Levitra for me at this time; my urologist's position (very emphatically) is that they're a waste of money until spontaneous erections occur, so he counseled that I wait for a bit.
April 15, 2006
I can almost remember having work issues that require priority.... My Medical Leave will end on May 5th, so I'll be meeting next Tuesday with HR to finalize my retirement.
PSA test came back at less than 0.1, which is really good news. Final grade is T2CNxMx.
My pump was not covered by insurance with Kaiser; I've had it for 10+ years, originally to see if it would be good for maintaining erections (some problem with premature ejaculation in my checkered past), but found it unsatisfactory after a couple of tries; the constriction was just not what I could deal with; cost was about $200.00, but that was many years ago.
There is absolutely no question but that it is worth it. The first time I masturbated after the surgery, all I could use was a finger and a thumb as my penis was really reduced, especially in length; there was clearly an increase in size before I started using the pump, but it was a slow recovery. I use the pump frequently, several times a day, and things seem to be re-sizing rapidly to a more normal size. Erections don't last very long, only as long as the vacuum is maintained, unless I am sexually aroused. Just this morning, Jennie Jo and I were playing around, and got to "that time"; I didn't have a serviceable erection, but popped on the pump, squeezed a few times, had a serviceable erection, had intercourse (not very long, unfortunately), a rousing orgasm, and even some discharge (which I think is from the Cowper's glands). The erection was not as firm as those from before the surgery, but it sure worked. So as an aide for intercourse, it was useful. I do get some tumescence without the pump, but so far not close to enough for intercourse. Sure hope this is a sign that things are starting to work.
I assert that it is worth it, because I'm still highly motivated to have intercourse, and Jennie Jo prefers intercourse after other sexual activities, even though those other acts are pleasurable and result in orgasm. I'd even do the penile injections and would seriously consider the implants to be able to have intercourse, for me and for her.
As I noted earlier, the amount of goop required to establish a good skin/tube seal on the Vacuum Pump with pubic hair is a fair amount and messy, so I am now (re-)shaving off all my pubic hair; all that is needed now is a small amount of liquid KY (much better that the jelly) in the pubic area around the base of the penis and some on the penis itself so that it slides easily along the tube walls as the penis lengthens (it's really not good if your glans sticks-- that smarts).
April 30, 2006
I've been dealing with a low grade UTI (Urinary Tract Infection) which has been reluctant to yield to meds; just completed the second course, and things seem to be better; stamina still is not where I would like it. Dr. says the UTIs are not uncommon after catheterization.
Oh my yes, the ED "vitamins" are pricey; I think I pay about $10.00 per pill for Viagra; they're 100mg, and I break them in two, as 50mg was very sufficient for excellent quality erections for me prior to the cancer surgery. Not so unreasonable an "expense" for quality erections to share, however. Not sure how effective the "vitamins" are for me right now, as several times there's been tumescence sufficient for intercourse, but it is sort of hit-or-miss and nowhere near as firm as before this journey. Jennie-Jo asserts things are definitely getting better and counsels that I should not be impatient; undoubtedly sage advice, but much more tolerable in the abstract than in the "now", when the body and mind think it's time, and the silly-ass little pecker is still taking a siesta.
October 25, 2006
PSA is less than 0.1, so both the doctor and I are relieved.
October 25, 2006
My energy level is good, although I do get really tired after driving the RV for more than about 4 hours, so we mostly target less than 200 miles per day. Doctor says that healing time is 18 24 months, and that I should be patient.
I get a fair amount of discomfort from arthritis (when they did the full body scan to see if the cancer had spread, the report was: you have arthritis in the neck, both shoulders, back, hips, knees, ankles, feet, and probably some other places), so Jennie Jo tries to make sure we stop every hour for at least a few minutes, so that I can walk around and loosen up.
I told Jennie Jo that I wanted no specific commitments when we were traveling, so we would just drive 'til we got tired or found something interesting to stop at, and she was o.k. with that; however, I then planned every stop, called ahead for reservations, made sure I had confirmations, etc., etc., so not very successful, especially early on, in just relaxing and letting things happen. Latter part of the trip was less structured, so I may eventually be able to chill.
June 12, 2007
I've started to get some erectile function back, but it continues to be very modest; barely enough to successfully have intercourse, although Jennie reports that I have had "real" erections when asleep, so there seems to be some progress. Orgasms seem to be becoming less intense (not a good thing) so I'll pursue that at my next check-up.
June 12, 2007
Doctor says I'm "cancer-free"; big excitement here at the WhiteHouse at that news.
February 09, 2010
PSA for me still undetectable. Have had some dribble surprises a couple of times recently, and have some leakage with sexual spasms, so have reinstituted the Kegel exercises, and will ask about it when I see the urologist in a few days. Erection quality continues to improve slowly (even though the prognosis was no improvement to be expected after 2 years), so I'm moderately encouraged.
May 31, 2011
Following is a letter I sent to my adult kids and close friends; unfortunately, I received only one reply.
All our loved ones:
If you would be offended by a candid discussion of our sexuality and sex toys, then just delete this message NOW; do not read further.
If you do not wish to partake in a candid discussion of our sexuality and sex toys, then just delete this message NOW; do not read further.
So, to you adventurous ones, who have eschewed the alarms and caveats above:
I broach this somewhat painful (well, at least mildly embarrassing; well, actually, it's not embarrassing at all) topic with the following:
One of the consequences of Prostate Cancer treatment is impotence, of lesser or greater magnitude, and almost always lesser "magnitude" (pun definitely intended; after all, they do cut out 1" 3" if one opts for surgery); in my situation, the various stratagems to improve function and quality of my erections offered by the Medical Community (they use terms such as "sufficient to enable penetration", or "serviceability") have met with modest success (for those interested, I am very willing to amplify and discuss those stratagems and all the specifics of prostate cancer treatment with great candor; you will need to ask, however). (Perhaps a forum at our next FUA? Hmm!!!)
While very pleased with this "modest success" (many, perhaps most, who endure the "benefit" of Prostate Cancer Treatment (that is, one hopes, no cancer extant subsequently) are both impotent and incontinent as a result of the tender ministrations of the medical community), it is my notion that Jennie Jo's and my conjugal bliss might be somewhat enhanced by employing a mechanical assist.
It being the fact that our last foray into the "mechanical assist", that is: Sex Toy, arena was some decades ago (oh, we were adventurous, and capable, then), I have great hopes that you, who are now of the generations we were then, might have some relevant current knowledge of "best of class" solutions, as well as the intrepidity (defined as: valor, bravery, fearlessness, boldness, pluckiness, gallantry, daring, great courage) to share with us the benefit of your wisdom and experience, so as to assist in some small measure, in our avoidance of "pieces of crap", and to assist in some large measure, in our approachment of sexual nirvana (after all, we are not dead; sometimes it just that the mind is willing, but the flesh is weak).
Those of you willing to assist, but lacking the intrepidity gene, could just have the "package" shipped in its brown paper bag, with our most sincere thanks, but please do let us know it's been ordered, so that we can avoid duplication (I wonder if there's a registry for such things?).
Note, please, that we are "gender neutral": that is, there is one of each of us, male and female (I'm sure that none of you: "All our loved ones" as addressed above, would be so tacky as to cast any "neuterized" aspersions (mine was an "RRP: Retropubic Radical Prostatectomy, and Jennie Jo's was an hysterectomy); solutions for either are enthusiastically solicited and welcomed.
June 01, 2011
I am cancer free. Sexual health is moderate, at best; erections continue to slowly improve, but still a disappointment.
Sexual excitement results in spasms (that's good), but frequently accompanied with urine leakage (that's not so good), which really curtails any fellatio (now that's bad).
Have to keep at the Kegels, as I've experienced small leakages a couple of times, really unexpected and without warning. As far as periodic leakage is concerned: I continue to use Preemie diapers when I'm going to be away from a toilet (or tree) for awhile (as when I'm traveling); just wrap the diaper around all the "goodies". This was the recommendation of my charge nurse when I had the RRP, and I've found it's way practical; I think the Pampers brand is most absorbent.
Being only modestly endowed to begin with, the couple of inches shrinkage is really noticeable, and something I DO notice. When I was researching treatment options, one of the articles I read did mention that "some" had reported a shrinkage; one even went so far as to assert that you would be pissing on the front of the toilet seat due to fore-shortening. Prior to surgery, I asked my surgeon about it, and he very carefully explained that there was no medical reason for fore-shortening, as while they were cutting out a 1' 3' gland, they just pulled the bladder down to the urethra end at the base of the penis and attached it there. However, the nurse who counseled me in preparation for the procedure stated unequivocally that both my flaccid and erect lengths would be noticeably shorter "no matter what the surgeon said". Well, the nurse was accurate, regrettably.
Orgasms are not so powerful as before the surgery (I really notice the absence of passing of ejaculate), and frequently I have a strong burning sensation and stabbing anal pain; my urologist attributes this to nerves being cut and getting "short-circuited", and counsels patience, expecting (hoping for?) improvement over time. Don't think he has any real comprehension!!! Certainly not going to give it up; as the EST aphorism states "when you're hot, you'll fuck a telephone pole".
Have also found out that my testosterone level is low, so have started using Androgel for testosterone augmentation; too early yet to ascribe much to the therapy, but think I'm having more sensation, interest, and "size". Next up is a liver function test to determine if my body can tolerate the hormone.
I'm still highly motivated to be sexual, and am still comfortable with my choice of treatment.
March 06, 2012
Spontaneous erections are infrequent, of short duration (pun intended), and just not satisfying, with no real expectation that there will be any significant improvement. Have tried a wide variety of toys (never knew that there was such a huge variety of hardness vs. softness, size (short, thin, long, fat), texture and shape (THAT is supposed to go WHERE? THERE??!!??) and mechanization (fast, slow, intermittent, or just plain ole manual), but both Jennie Jo and I prefer skin to skin by a wide margin.
So have decided to get a penile implant, after talking to several urologists. The surgeon who will be doing the implant is clear that surgery provides the best possible outcome for my "condition" (not all that unexpected a position from him; he is, afterall, a surgeon!!!).
Will have the procedure tomorrow early afternoon, overnight in the hospital (classified as an "outpatient" procedure, and could probably go home in the evening if I was really amped to do so). Take it easy for several days and promise not to attempt to pump it up until the good doctor shows me how (at least 6 weeks out), and I demonstrate sufficient proficiency to pump, de-pump myself (I have to do this myself, without Jennie Jo's assistance. Good thing I have no shred of modesty or embarrassment left).
I'm told to expect SIGNIFICANT bruising, swelling and some discomfort; supposed to be quite a vision until some healing has occurred. So I'm taking before and after pictures to be able to see what's happening in my nether regions. Have a few of both flaccid and erect (best I could do) from 2009, so should have a clear visual of the effect. Wishing now I had taken some pictures pre-RRP, and immediately after, but I surely wasn't "into" that then.
Thinking I might post on one of the prostate cancer/men's health help websites and to those interested; being in the middle of all this, I'm fascinated, and wished someone had posted their experience. But apparently a taboo subject, and most (including my kids) just seem to get wigged out at any hint they might look at such. [Wayne had not come across the YANA site. For some more experiences with implants go to the Resources page and put penile implant in the Site Search Engine]
Shared the "preemie diapers" solution to minor incontinence with the urologist; said he'd never heard of it, and was way enthusiastic, and would share with his patients; so able to give back a little.
March 15, 2012
Had the surgery a week ago, over-nighted in the hospital, then back home.
Just now getting to be comfortable enough to spend more than a couple of minutes sitting.
Had a Foley catheter inserted while asleep, and left in place until just before I left the hospital; certainly brought back all those "fond" memories of catheterization following the RRP: tip of the penis irritated, inflamed and sore, and that wonderful feeling of withdrawal (the nurse says: "this will be uncomfortable, breath in, and hold still", and it feels like something alive is being pulled out of you); certainly to be endured, not to be enjoyed.
Penis and scrotum all wrapped in gauze (reminded me of those mummy pictures), and much "more" than I was going in, so I'm thinking that they were understated when cautioning that there would be considerable bruising and swelling; have a bandage on the pubes, right at the top of the penis base, and a drain tube through my abdominal wall.
Seemed to be only slightly sedated (I had warned them that I was way sensitive to Percocet, Vicodin and similar, so think they were pretty light in dosage given), but am placed over-night in the ward where active monitoring is in place, given my history for stopping breathing when sedated. The bed-side monitor beeps annoyingly frequently, due to my respiration frequency dropping below the lower limit of 10/minute; being well trained (married for 45+ years), when it beeps, I focus on respiring, deep breaths, and the annoying beep terminates. Jennie Jo sat with me for awhile, helping me to remember to breath; about 8p.m., I ask the nurse if the remote monitoring is in place (after all, that is the reason I'm on the ward); she responds that I should be sure to have a sleep apnea check when I leave the hospital. I repeat my question "is the remote monitoring in place???"; she responds "you need to get a test for sleep apnea as soon as you can after you leave the hospital"; now, I'm a little ticked, so I tell her: "I'm here in the hospital now, AND I WANT TO KNOW IF THE REMOTE MONITORING FOR ME IS IN PLACE HERE, NOW!!!!!!!". She blinks a couple of times, finally gets to "be here now", and affirms that, yes, in fact, the remote monitoring is in effect. What stupidity and mis-focus (probably a little insensitive, but gee whiz
So I send Jennie Jo home (she's also taking care of daughter-in-law Caroline (recuperating at our house following life-threatening surgery) and the 3 local grand-kids).
The bed-side monitor continues to beep annoyingly frequently; when it beeps, I focus on respiring, deep breaths, and the annoying beep terminates.
About 11p.m., a shift change, and my replacement nurse comes in to introduce herself, and do my vitals; she says "I've had a call from the central monitoring station, and they don't have you on their monitors, and are wondering if you've arrived yet". She calls them, they reset, retry, unplug, plugin, and shortly brightly affirms that they now have a signal. What a SNAFU!!!
Next morning, the big cheese CHARGE NURSE stops by to inquire how I'm doing, and if all my needs are being taken care of; I relate the incident (as well as my problem of my room-mate's running his TV on loud 'til 5:30a.m., and an ineffectiveness in getting it turned down, even when I complained to the staff (who repeatedly stopped by to ask if everything was all right and if I needed anything, and assuring me that they're there for me, sometimes waking me up to inquire and assure (surely this is mis-guided)). The big cheese CHARGE NURSE listens distractedly, says that she'll ask the NURSE MANAGER to come by very shortly to get this information first-hand so that she "can act on it". Of course, this never happened.
This is clearly a facility where the there is a huge deficit in providing quality and competent patient care, instead giving lip service to "patient satisfaction" by repeatedly asserting verbally "we're here to give excellent care; let us know if there's anything you need", and not making the connection that they actually might provide quality health care. I will not willingly enter their facility in future, nor subject myself to their tender ministrations. There must be better alternatives.
Next morning, I'm informed that I'll be discharged after removal of the catheter and I've been able to urinate, the doctor checks me out, I've arranged for someone to pick me up, and that the abdominal drain line will be removed 30 minutes before discharge. The catheter is removed. The doctor comes by, and un-swaddles my penis and scrotum, looks thing over, and opines that it all looks good. Then he massages my scrotum, finds the pump now in residence, and squeezes the pump a couple of times, resulting in a little more tumescence; the light-bulb flickers: the implant was inflated during surgery, and is going to stay that way during the healing process. In retrospect, this does make sense; but absolutely the first indication that I'm to have an erection for at least 3 weeks (the first post-surgery check-up), and up to 6 weeks (when I'm to be permitted to play with myself, subject to the caveats below), continuously. The preparatory information all cautioned stridently that said device should not be inflated or played with until approved by my doctor, and that "the patient" (that would be me) definitely should not inflate until and unless appropriately trained by my doctor, and have demonstrated at least a basic level of competence in pumping/de-pumping. Did not find any reference in any information, either on-line or as provided by my doctor, to a non-stop erection; if such exists, I surely just blew by it.
Now, the preparatory information does specifically stipulate that tight-fitting underwear should be eschewed ("you will have significant bruising and swelling"), which I'm happy with, since I mostly don't wear underwear most of the time, and the underwear I do have is fairly light weight and stretchy, with anatomically correct pouches "to gently cradle the male anatomy" (just lots of discomfort with tight fitting underwear ever since my vasectomy in '70; urologist says that 5%-10% of men have non-specific and non-treatable testicular discomfort after snipping). So I go commando. I'm treating pain/discomfort with Tylenol (the narcotic pain relievers make me disoriented and loopy; being "somewhat" of a control freak, I can't stand to be disoriented and loopy, so will not do the narcotics except in extremis (or when Jennie Jo brings me oxycodone rather than meloxicam (non-narcotic) when I ask for a pain pill). Tylenol takes the edge off sufficiently, at least for the first day or two post-operatively at home (I'm mostly sitting or reclining). As I get more active, much discomfort everywhere in the scrotal/perineum areas. Bad enough that I'm starting to think that narcotics might be a really good idea.
So I re-read all the literature I have, and Google everything even remotely related (most URLs suggest pills, various Rube Goldbergish contraptions that just look painful, or porn) , and find 2 sentences which might have relevance.
One suggests that keeping the penis upright against the stomach post-surgery might be useful; the second suggests that "some men have indicated that pain/discomfort is lessened if they support the penis/scrotum post-surgically". I call my surgeon's office (surely he should know all these considerations, right?), and ask "how long will this pain/discomfort last?". The somewhat glib (I think) answer: some men have pain/discomfort for weeks or more. Thank you very much for that assistance. So then I ask (not really sure why after the first "informative" answer): "I read that supporting the erect penis upright may lessen the pain/discomfort; is that accurate? If so, how would one go about that, since your instructions advise against tight fitting underwear?" The answer: "I don't know, perhaps an ACE bandage?".
Clearly, I'm on my own (again; seems like a recurrent, lamentable and unwanted, circumstance to all these medical/surgical ministrations.
So I start to think about the mechanics of the situation; I'm thinking:
I have a hard plastic pump in my scrotum; it's reasonable to expect that the testicles (even as diminished as they have become since I'm augmenting testosterone with androgel, so they've shriveled) and tubes and blood vessels and whatever else was in there natively may take a bit of adjustment to sharing, so a certain amount of discomfort is to be expected. It appears, however, that there is little discomfort here.
By observation, when I'm reclining, the pain/discomfort is significantly diminished; the erect penis is pointing towards my head, mostly laying against my stomach.
When I'm active, my erect penis is sticking out from my body (well, it IS erect, afterall). It is composed of 2 parts: the external penis and the internal penis, both parts now filled with saline solution (feels like a gallon or two, but probably somewhat less; still, a noticeable weight); the fulcrum is positioned in the perineum, just south of the base of the scrotum. Aha, this is exactly where most of the pain/discomfort is.
Conclusion (he says cleverly): support the erect penis to take the pressure off the fulcrumal area.
Put on underwear (fairly light weight and stretchy, with anatomically correct pouches "to gently cradle the male anatomy"); significant and dramatic reduction of pain/discomfort.
By way of confirmation: Jennie Jo generally holds my genitalia, or parts thereof, when we are in bed (both asleep and awake); last night, my sensitivity to touch had diminished to the point that I could allow such holding (something I normally actively encourage), and facilitated by removing my (supporting) underwear. Woke up about 3 a.m. with significant pain/discomfort. Put back on underwear, took some Tylenol. Obviously, not yet quite ready for the commando thing, but will be there before long I hope.
An interesting (at least to me and Jennie Jo) aside: as the swelling, tenderness and sensitivity have declined, we've experienced that "awakening" and sexual response we're so used to, a couple of times (clearly, the spark is still there). My response? A more robust erection and sexual tingling; a very good thing, I think. The preparatory information stipulates that sex should be avoided until the good doctor o.k.s; think I'll call and ask (well, I do have a very serviceable erection!!!).
Still taking pictures to document the changes; didn't know that all those colors could arise in the human body.
March 15, 2012
One anecdote I neglected to include has to do with the logistics of using the toilet while sporting a boner. I do have one of the elongated toilet seats, but even that is a decided challenge. When seated, my erection extends past the front of the toilet seat, which really makes a mess. Twisting to get the penis inside the toilet bowl is just plain uncomfortable, unless I bend way forward; pushing down on the penis just hurts. Quite a process to have a bowel movement and not concurrently piss all over my shoes, the floor and wall. Have taken to urinating into the shower standing up.
Am unable to sit up straight on just about any surface, but especially anything hard; the prosthesis tubes which extend inside the body are like 2 rigid rods in the perinea and are way uncomfortable to sit on.
Only 5 more weeks!!!
March 20, 2012
Another anecdote: our daughter-in-law is recovering from major surgery, and she and her 3 kids (11, 9, 7) are staying with us as she recovers. Now, I have a 7/24 erection, which although of modest conformation (4+" (was almost 6" before the RRP)), is still noticeable, even though I'm trying to be discreet. I overhear my 7 year old grand-daughter whisper to her 9 year old brother: "Bampa's wee-wee is really big and fat"; the 9 year old comes over and whispers to me: "Igy (that's what we call her) said something inappropriate". So they notice.
On reflection, I'm thinking just about everyone notices, and have taken to being pro-active in letting everyone who comes to the house know that I've had a penile implant. Just told an AFA cadet we're hosting; his response: "I did notice, and was wondering what was up".
Clearly, socializing requires some consideration.
March 30, 2012
Had a 3 week post-surgery check-up with my urologist. He deflated my erection (what a relief never thought I'd say that!!!), then pumped it back up; stated that things were fine, and directed me to try the deflate/inflate process; I fumbled around, and was not remotely effective, let alone proficient. Definitely ended up pinched and bruised. Instructed by the good doctor to go home and play with it myself. Follow-up with him in 2 weeks.
Asked the good doctor about the un-awareness that I would be left with an erection after the surgery, and that that was contrary to anything I had read, including the information I had received from his office; his response was to quote some Dr. Somebody who was reporting that better outcomes were extant if the penis trauma healed "inflated". He did not seem to appreciate my (somewhat pithy) observation that he might then provide more accurate information to his patients undergoing this procedure.
April 13, 2012
Back to see the urologist after 2 weeks playing with my penile pump, trying to figure out the intricacies of the pump to effect inflation/deflation on demand (sure is a temperamental little device, but I am now able to "sort of" manage it); I can create an erection just about every time I try (supposed to practice at least once every day), and can effect a partial deflation, but haven't yet been able to drain the cylinders to a totally flaccid state (which involves simultaneously depressing the release valve to just the right position (through the scrotum wall, using the right hand thumb and finger) and squeezing the penis shaft with the left hand. Urologist says what I'm accomplishing is what's expected, as the tubes in the penis will always have some fluid left in them; I'm thinking this partial erection is my new flaccid state.
Now, my pants are down around my ankles, and the urologist has been handling and massaging my scrotum and penis to check the workings, and I'm currently erect again (not aroused, just erect), in flagrante delicto. I have a bunch of questions I want answered, so start through them. The poor doctor seems distracted (he's sitting on his roller chair, just about at eye-level with my erection), and I'm trying to figure out what the problem is, since my questions don't seem to be getting answered fully. He finally says: "please pull up your pants". As I've noted before, these procedures remove any shred of modesty, and it absolutely never occurred to me that my urologist would be embarrassed by my nudity.
Hiatus in sex is just about over (absolutely forbidden for a full 6 weeks to allow for healing; the doctor is adamant that there is to be no sex, not even masturbation, since "rough sex could do damage"; I try to 'splain that even in my youth, we weren't into rough sex, certainly not now that we're 68, and certainly never while masturbating. He is unswayed).
Looking forward to trying "it" out in 5 days.
April 18, 2012
Well, it's been the stipulated full 6 weeks. But
Jennie Jo had a couple of questionable thingies show up on her last Friday mammogram, and will be out-of-town doing additional procedures this week to ascertain what the questionable thingies might be.
masturbation works, and I don't seem to have broken anything. The prosthesis (tubes, pump, and assorted tubing) are very noticeable, but absolutely do not inhibit orgasm. It mostly just feels different.
Interesting that, while I don't actively seem to focus on my cancer, I'm always relieved when the PSA test result is "undetectable"; sort of, it's always there like a big turd.
Re: the "size" issue: certainly I exercised my penis frequently after the surgery (as well as before), with the vacuum pump, masturbation, and intercourse (when possible); just played with it a lot. As I reflected previously, kept thinking that size too was recovering, at least incrementally. But did have another of those epiphanies a few months ago: erect size before surgery was approaching 6 inches, erect size (fleeting and very short duration) after surgery was 4ish inches, and even continued incremental improvements wouldn't amount to much; and being really motivated to satisfy my wife, did opt for the mechanical assist. The penile implant device is designed to increase girth (surely does that), with a modest increase in length (probably adds about ½ inch, a significant percentage for me). As previously noted, I can masturbate fine with it, but haven't yet had the opportunity really use it effectively with my wife (one try, but found there's still considerable tenderness, so had to shut things down prematurely); I'm sure this will get better.
Have had several sexual encounters with my wife; still considerable tenderness, so we have "gentle" sex, and are exploring positions which work for both of us. Sort of a return to my teenage years and experimentation; it's all new (again).
April 23, 2012
Have observed a bulge in my abdominal wall just to the right of my RRP incision scar, about the size of a tennis ball; appears to me that the bulge is the reservoir for the fluid for the penile prosthesis.
May 8, 2012
The doctor agrees that this is unusual ("never seen anything like this"); I remind him of the notice I had given him when preparing for the penile implant that my stomach wall bulged a bit when I coughed or sneezed, and that I thought there was a weakness in the wall there. His assessment at that time was that he would not be cutting near there, so nothing to be concerned with. He indicates that he will consult with his medical school mentor, and expects to have a CT scan done to determine if the fascia is intact or herniated (seems like a no brainer to me).
I also tell him that the implant continues to be erratic, a couple of times has deflated without the valve being released, and a couple of times wouldn't pump up, even though I could squeeze it and feel the bulb change. Told him that I was losing confidence in it operating correctly and as I wanted it to. We agree to monitor for now.
May 21, 2012
The CT scan shows a break in the fascia, and the reservoir pushing through it. The doctor asks if it's worth it to correct the hernia (it doesn't hurt much, and there is a risk of infection, and perhaps we're going to have to change out the pump at some time, and would want to do all at the same time?). I respond that I have a bulge in my stomach wall, it burns at times (I think it's the fascia pulling apart as the reservoir pushes against it), it's coming on summer time and I wear pretty skimpy bathing suits or go nude a lot of the time, and that I didn't want my stomach bulging out. So we "agree" to fix the hernia.
May 30, 2012
In the hospital for the hernia repair. The surgeon indicates that he will make this incision through the RRP incision, so that I won't have another scar. And he'll be using heavy duty suture line, and putting knots in it to be sure that the fascia stays together; it is dissolving suture line, but will take some time to erode away.
He asks how the prosthesis has been working; I note to him that it appears to me that the glans of my penis is turning to the right when I'm erect, and that it feels to me that the implant on the left is about ¼' longer than the one on the right. He says he'll pump it up and check it out while I'm under anesthesia.
Jennie Jo asks when we will be able to have sex again (yep, for sure it has been working, and she's become a bit insatiable and demanding); he stammers a bit, suggests a couple of weeks at a minimum for penetration, stammers some more, repeats, and offers that we can do "other things"; embarrassed the poor guy; sort of get the impression that he doesn't often deal with randy (and graphic and explicit and candid) grand-parents.
As always, I alert the anesthesiologist about my forgetting to breathe when recovering from anesthesia; he indicates he'll be sparing in the amount of anesthesia I'm given, and he'll instruct the surgeon to locally numb the area where he'll be doing the incision. He wants to know what the surgery is, and what has elicited it; so I 'splain about the prostate cancer and RRP and penile implant and bulging; and offer that I want it all fixed so that we can have sex at will. His response is to be a bit discomfited, but offers that he's glad to know it, as it gives him hope for himself. Aah, these young guys...
The nurse starts a IV line in the back of my hand, but has some trouble getting it placed, and starts moving the thing around, and pulling it out a little, and pushing it back in, and
; so I have a vagal response, tell her I'm going to pass out and to lay me down, which she does, calls for help, who gives me oxygen, cool towels on my forehead, and takes away the heated blankets, and lifts up my hospital gown to the "point of decency" to help me cool down, and then sternly counsels me, several times, to always let them know I pass out so they can be prepared and "do things which will help me in advance". Lots of talk between them about whether its in o.k., "looks like it's working", "have you twisted that connection together so that it'll stay", "let me show you", "I pushed it in quite a bit, and twisted it a bunch"; "he'll be really bruised", "tell him not to look, as there quite a bit of blood and mess
". The OR room nurse comes to gather me up; seems there must be a turn-over from the pre-op group to the op-group, but my chart is missing; lots of scurrying around and looking here and there, and conversation over and about me, but not to me, as if I'm really not there except for my physical corpus. So I comment: "I feel just like a slab of meat; when my daughter was going to medical school I counseled her to never get to the place where she referred to her patient as "the uterus in room 2"", and here I am, right there. Only a very modest acknowledgment, regrettably, that I had even spoken.
The chart is found, and we can proceed. Off we go to the operating room. I crawl from the gurney to the operating table, and remind the anesthesiologist to tell the surgeon not to puncture my reservoir; he says that the surgeon will not do that.
The extension to support my left arm is already in place; after a bit of fumbling with the IV tubes to get them out from under me and sort of aligned, my left arm is strapped down. But there's a bit of bother getting the right arm support attached to the table; seems the blankets and drapes are hanging down over the side of the table and in the way; since it requires two hands of the nurse to get the extension positioned and attached, he is struggling to keep the material out of the way and the extension attached simultaneously. Solution: use the ole noggin: he pushes the blanket up against my side, puts the top of his head against it to keep it out of the way, and finally manoeuvers the arm support into place.
The anesthesiologist places an oxygen mask over my nose and mouth (just perches on my beard, but I'm definitely getting oxygen) and says: "I'm going to give you a little something now".....
Coming out of anesthesia seems really easy this time; disoriented for only a short time, able to respond that yes, I would like some ice chips. I'm thinking that this anesthesiologist is really good. No sign at all of forgetting to breathe; I'm a happy camper.
Jennie Jo reports that the good doctor told her that everything went fine with the hernia repair, and that he pumped up the prosthesis and everything seemed fine to him: no problems.
I'm given a half dozen crackers (last food some 24 hours ago); really tasty. I'm asked if I want to try going to the bathroom (I'm not permitted to leave until I've urinated); I'm successful.
I'm discharged, and off to home. Watch the news, and off to bed. Take 2 tylenol, which handles the discomfort.
Jun 1, 2012
Down to one Tylenol every 12 hours for pain; only a moderate amount of discomfort and tenderness. Watching golf (I say helping Tiger) and munching on a few peanut M&Ms; crunch on something, and assume it's a nut shell. But no, it's half of one of my teeth. Just what I (don't) need: open wound in my stomach and now dental work (another crown, I'm sure).
Expect I'll be on CIPRO to guard against infection for a month.
PSA still undetectable, have good libido with the testosterone gel, and much improved ability to perform with the boner-on-demand; Jennie Jo and I are both much pleased. Interestingly, it seems to me that there is not much difference in the duration of the sex act itself (when we finally get around to it after all the foreplay), but that the reduction of my performance anxiety makes the event way more pleasurable for both of us, knowing that, if I orgasm before her, I still have a very serviceable erection for her pleasure.
Oct 23, 2012
I don't have any problems urinating, and do not have dampness or leaking overnight (thankfully, since I sleep nude). Do always seem to have a several drops after urination, no matter how much I shake, squeeze or blot with toilet paper; seems like there's that small release when I tuck my penis into my shorts.
I do sometimes experience the sensation of being unable to fully empty my bladder, but that's associated with those times when I have it pumped up to full erection; I pump it up to full erection several times a week, even when we're not having sex, and keep it that way for several hours - relatively easy to do since I'm retired, and live out in the forest - I urinate then standing up in the shower, and will dribble a little if I don't bear down and wait a minute for the urine flow to fully stop. One of the guys commented, don't remember which forum, that his urologist had prescribed pumping up to full erection regularly, for at least a couple of hours, to be sure adhesions didn't form, and to ensure maximum length and girth; he noted that he over-nighted with a full erection, and just deflated when showering the next morning; I tried that, and found that to be VERY uncomfortable, just no way for me to get the erection positioned so that it didn't get bound up in the sheets (expect it's because I sleep nude). When I'm wandering around the house pumped-up, if no guests are around, I just unzip, and let it hang out in the breeze, since the head of my penis gets irritated and way sensitive if erect and constrained in clothes.
Can certainly identify with those who report pain when sitting too long, and have found that that pain at the base of the penis goes away if I wear underwear that keeps my penis aimed up, rather than hanging down. I do have urgency issues, where I don't get much advance notice that I gotta piss; all of a sudden, it's RIGHT NOW; so if I'm leaving the house, I get a preemie diaper, wrap it around penis and scrotum, aim my penis up, and put on underwear with a really pronounced pouch, which mostly holds everything in place, so that I don't get squished between my legs.
Would agree that the partial erection is nice; originally, when deflating I very carefully held down the release valve, and squeezed my poor penis vigorously to get as flaccid as I could get; found that to be an uncomfortable process, and that I still couldn't get all the fluid from the reservoirs, so now I just press the release valve to the point of equilibrium (when it stops that little squeaky noise) and don't squeeze my penis at all; not much of a difference in deflated size, and my penis is much happier.
I was counseled by my implant surgeon that most healing would take at least several months, with complete healing up to 2 years. I had the implant on March 7th, 2012. Now 7 months out, I still have some tenderness and have to be a cautious about angles and thrusting, for if we get too rambunctious I have to stop and recover. My wife really enjoys "her" new toy, especially the staying power, and is now way enthusiastic about doing "it"; we used to chat about foreplay, what she liked, and how much was necessary to get her "ready", but now she's a bit insatiable and randy all the time, like we are 17 again. She is very sensitive to me and what's going on with me, fortunately, so slowing things down when I need to is not a problem.
My experience was that, at 3 months, I was still way tender, and we just did slow and gentle sex; even then, there were many times when I'd not be able to enjoy touching, let alone the sex act, again for several days while recovering from soreness and tenderness. I certainly was unable to have "a very vigorous fuck fest" then, nor even now. For sure we're ramping up the vigor, but if I thrust a little cock-eyed and bend the little fellow, that's a big owie, and really takes the edge off.
With the prosthesis tubes inserted into my perineum (partially filled with saline fluid); am frequently aware that I'm sitting on 2 tubes; pretty uncomfortable if it's a hard seat.
For me (and my wife) the penile implant absolutely beats the injections and VED. We are unabashedly sexual animals, and the penile implant facilitates sex at a vastly superior level.
There is no question but that PCa and the treatments thereof are life altering, but I don't think necessarily life shattering (although that surely does happen). Don't think we get to choose WHAT happens to us, but do believe that we do get to choose HOW we react to and handle the slings and arrows sent our way.
Absolutely, it does take some time to get used to the new you.
Oct 27, 2012
I did have an "interesting" experience with our TSA folks at the Dulles airport:
To set the stage: as most of you know, I have had prostate cancer surgery, a few years ago, and subsequently have a bit of incontinence on (very) rare occasions (the nerves are damaged enough that I have little forewarning that I gotta go, so if I haven't been paying attention, or am driving or flying and not able to get to a bathroom RIGHT NOW, I may have an "oops"); to protect against having an embarrassing moment, I wear a diaper when travelling (not adult diapers, but a preemie diaper that I wrap around my genitalia), which adds some additional bulk. Furthermore, as most of you do not know, I have a bit of a problem where my right testicle pops out of my scrotum and goes inside, an uncomfortable happening; to keep it in place, especially while travelling, I use a loose-fitting cock ring (Google it), which has metal snaps to hold it in place. Usually, I do not put on the cock ring or diaper until after I go through the security scanners, but was already accoutered since we had driven 3 hours to get to the airport. You do see where this is going, don't you?
Didn't think too much about it on arrival at the airport, especially since on the flight to the East Coast I had already been wearing the diaper, and had gone through the Denver scanner which shows all, without incident. (I prefer the picture scanners, since that usually avoids the pat-down I always get since I have had my shoulder replaced with metal, and always set off the alarm.)
At the ID check, I had chatted a bit with a TSA agent who was watching/monitoring the process; his name was Marcus. This is about 3 hours prior to our flight.
At the X-Ray machines, I avoid the metal detector, and step into the picture scanner, thinking I'll be through quick. As I exit, a TSA agent steps in front of me, and tells me to wait. Several minutes later, he listens and talks into his shoulder CB. He calls over another TSA agent, with whom I'm to go for an additional check; he calls over another TSA agent to also attend it is Marcus. We walk to an enclosure with opaque glass. Clearly, this is not going to be quick.
I ask Marcus what he's there for; he tells me he is to be the witness to the process, so that there can be no "he said, he said" questions raised.
The first agent explains: "something unexplained showed up on the scan. I'm going to pat you down; on your back side, I will use the back of my hands, and be firm everywhere. On your front side, I will use the front of my hands, and be firm everywhere. Is there anyplace you're sensitive to touch?". Now I'm about the quip that of course my genitalia are sensitive to touch, but decided that that might not be the wisest, so I just say there's no place he shouldn't check. He repeats "I'm going to be thorough, OK?". I say: "do what you need to do".
No problems on the back side.
No problems on the front side, until he gropes my diaper and genitalia. He stops, looking a little embarrassed, and asks: "I have to ask you, is that all you?". I smile at him and Marcus, and say: "I've had prostate cancer surgery, and I wear a diaper" (I do not volunteer anything about the cock ring and metal fastenings). I'm thinking that they're going to ask me to drop my shorts. The TSA agent says "Sorry, that probably explains what showed up." Marcus comments: "That's really tough; sorry". I quip: "you're both guys, someday perhaps you'll have the same opportunity." Then I quip: "I do wish it was just all me, that way my wife would be much happier", and smile. Us guys are all now smiling. Marcus says: "That's a really good one, haven't heard that one before; best one today". The first agent makes detailed notes in his notebook, my name, flight number, etc. I thank them for keeping us safe (just a little tongue-in-cheek, but they don't seem to pick up on that). And I'm free to go.
Nothing quick about this proceeding; glad we got to the airport a little early.
We stop at the wine bar for lunch, do some shopping, and go to the gate, about a half hour before boarding. I'm sitting, when up walks 4 TSA agents, with a briefcase with electronic equipment in it. One of the agents is my friend Marcus: I catch his eye, smile at him, and ask if he's following me, and also ask if he likes guys (I just can't seem to resist); he says no, and explains our encounters to the female TSA agent he's with. Two of the agents disperse to the perimeter around the gate, and the TSA agent with the electronic gear walks over to me, and says: "I need to see your boarding pass and ID". I'm thinking: I really should have explained about the cock ring when they patted me down!!! Marcus volunteers to the agent asking for my ID that he knows me, and had done a search earlier and that I was O.K. The agent glances at Marcus, dismissively, I think, then back at me and repeats, a little more forcefully, that he needs to see my boarding pass and ID; I give them to him. He checks them out. And hands them back, and goes on to the next person. His CB beeps, he listens, calls the agents, and says "we gotta go, now". And they're gone.)
Subsequently, I asked one of the TSA agents doing my "routine" pat-down for advice about wearing a diaper or cock ring when going through airport checks; his advice: take them off before getting into the line.
Oct 29, 2012
Regarding penis size: Don't really know precisely my measurements, as I've never been too sure how to measure them to be consistent with published stats, and, over these years, have certainly had some weight fluctuations with varying depths in the size of fat pads over my pubic bone (frequently, doctors make comments like "well-nourished"). Definitely know that I haven't been too rigorous in using the same technique in measuring from time to time; flaccid lengths are wildly variable for me, since just the process of handling my penis to perform a measurement almost always resulted in the start of an erection, and I do have a very pronounced response to environmental conditions, and have observed pretty dramatic differences depending on the time of day, as well as my stress level.. Assume the VED measurements were close to accurate, since they were mechanical and repeatable, and therefore not impacted by arousal level (won't ever get this measurement again, since VEDs are contra-indicated following an implant). Would also assume that all the rest should be interpreted as "orders of magnitude", +/- ¼ to ½ inch (even the post-implant measurements, since I do have a clear natural arousal response). Probably also some bias to see measurements at the high end.
With the implant, I'm more than ¼ erect all the time, and girth is enhanced; still get more girth and length when pumped up. My length was approaching 6 inches when really turned on pre-RRP, perhaps 6 ¾ with the VED attached (7 if I really cranked up the vacuum, but those were painful), 6 after removal of the VED with the bands on; interestingly, I don't have a flaccid measurement pre-RRP, but I think perhaps 3½". 4¼ erect after the RRP (yep, that's a "4", lost 2"), 3" or a little less non-erect after the RRP, now 5½ pumped up after the implant and a fair amount of penile exercise, close to 4½" deflated (I do not squeeze my penis when pressing the release valve, just let it equilibrate). For me, the size "recovery" post-implant after the considerable downsizing following the RRP is most welcome.
Jan 9, 2013
At follow-up with my urologist surgeon who performed the penile implant, get the report that PSA is still undetectable.
In response to his "any issues or questions", I report that I have 3 continuing problems:
1) Orgasm results in stabbing, burning anal pain, commensurate with my state of arousal, and of sufficient intensity that it's getting in the way of enjoying sex.
2) Both testicles are tender (more-so the right, which is co-habitating with the pump), with a fair amount of discomfort much of the time. Additionally, my testicles don't stay in my scrotum, but move up into my groin, which can be uncomfortable (I use a cock ring to keep them in the scrotum).
3) Still have not much warning that my bladder is filling up, which results in precipitous runs to the bathroom, frequently when in the middle of a conversation or some task; just a "gotta-go right now", or else.
For #3, the urination urgency, he indicates that there are meds which might work, but that he would like me to cut down on things I've been drinking which are known bladder "irritants" (like coffee, tea, beer, wine, liquors). I am not enthused about this solution, not one bit.
For #2, uncomfortable testicles and #1, orgasmic anal pain (pun intended), he has no surgical or chemical fix he can provide, but thinks that pelvic floor rehabilitation might help, and provides a referral to Orthopedic Rehabilitation Associates. And he suggests I should eschew the cock ring, as it might be too constricting, especially considering the added hardware there.
Next day, I have a follow-up with my primary urologist, and provide the same list of outstanding problems.
For #1, orgasmic anal pain (pun intended), he has no solution, just a comment that trauma associated with PCa treatment can manifest in unusual ways.
For #2, uncomfortable testicles that won't stay in the scrotum, he states this is a condition labeled "retractile testicle", is not uncommon, and he knows of no effective treatment in adults (in kids, they pull down the testicle and suture it to the bottom of the scrotum to prevent sterility); googling results: "A retractile testicle is a testicle that may move back and forth between the scrotum and the groin. Sometimes, the retractile testicle is no longer movable and instead stays up in the groin; this condition is called an ascending testicle. An overactive muscle causes a testicle to become a retractile testicle. The cremaster muscle is a thin pouch-like muscle in which a testicle rests. When the cremaster muscle contracts, it pulls the testicle up toward the body."
For #3, the urination urgency, he indicates that there are meds which might work, and provides a prescription to treat an overactive bladder condition, which I'm to try for a month, to see if I become aware earlier of an impending need to urinate.
Jan 22, 2013
Have my intake with a therapist at Orthopedic Rehabilitation Associates, where I report my 3 continuing problems.
After some back and forth, she suggests that my problem # 1,orgasmic anal pain, may be muscle related, rather than nerve damage from the RRP, and attaches several sensors (like for an EKG) around my anus, hooks them up to her laptop, and asks me to do Kegals. She reports that clearly my pelvic floor muscles are all out of whack, and never relaxing, just always in tension. So I have a condition which may be treatable; initial plan is to start trigger point massage therapy to my pelvic floor. (Then she removes the taped-on sensors from around my anus, along with handfuls of hair, accompanied by my squeals now that's an owie.)
For #2, uncomfortable retractile testicles, she says we'll deal with that later. (I'm thinking, this may be another muscle problem, the cremaster, so perhaps also amenable to massage therapy?)
For #3, the urination urgency, she decides I need to track liquid inflows and urine outflows for several days, to establish a baseline and see if there's anything that jumps out as a flag.
Jan 28, 2013
Have had lots of experience with massage, but found I was not really prepared for trigger point massage to the pelvic floor. We started out sorta tamely, with some checking of range of hip and leg movement, and exploration of the psoas (forms part of a group of muscles called the hip flexors, which contributes to flexion and external rotation in the hip joint) for state of tension/relaxation; not typically done with massages as the psoas are pretty deep on the outside of the abdominal cavity, but sometimes targeted in a deep tissue massage if one complains of hip problems. Apparently not much of interest there.
On went the rubber gloves. And I had my first ever massage of the muscles around my anus (external). Not painful, not uncomfortable, definitely not erotic, and surely shocking.
And then... then we moved on to trigger point massage to MY pelvic floor. I hadn't really given much thought to the mechanics of how one gets to the place to do massage to my pelvic floor, but, in retrospect, it does seem OBVIOUS. Lots of goop, then there's a finger up my ass.
Seems like there's lots of muscles and tendons in the pelvic environs; her probing finger was deployed with a fair amount of pressure, and where she found a knot in a muscle or a tendon or ligament (perhaps she felt the knot, but I'm sure that some number of times, she noted my whimper when she pressed a sensitive area), then the increased pressure and kneading until the knot released (accompanied with many "just relax, take a deep breath" exhortations to me).
Finally, the finger withdraws. She says, "that's all for this time. You'll probably be sore, so you should experiment with ice and heat on the anal area, and use whichever one gives the most ease". And I'll see you next week.
I'm given a series of exercises for pelvic floor relaxation, and sent on my way.
Apr 23, 2013
So, the current status of treatments for my 3 continuing problems:
1) Orgasm results in stabbing, burning anal pain, commensurate with my state of arousal, and of sufficient intensity that it's getting in the way of enjoying sex.
2) Both testicles are tender (more-so the right, which is co-habitating with the pump), with a fair amount of discomfort much of the time. Additionally, my testicles don't stay in my scrotum, but move up into my groin, which can be uncomfortable (I use a cock ring to keep them in the scrotum).
3) Still have not much warning that my bladder is filling up, which results in precipitous runs to the bathroom, frequently when in the middle of a conversation or some task; just a "gotta-go right now", or else.
Regarding 1): Have had weekly (almost) pelvic floor trigger point massages since January, with periodic retesting of the health of my pelvic floor muscles (attaching several sensors (like for an EKG) around my anus, hooking them up to a laptop, and asking me to do Kegals). The current report is that my pelvic floor muscles are somewhat more relaxed, with a measurable reduction in the level of baseline tension. My physical therapist thinks this is good progress.
She also referred me to another therapist who does "dry needling", which involves sticking needles (looks like acupuncture to me, but I'm assured it is not) into the nerves associated with specific muscles, then spinning them around, creating sufficient trauma that the nerves invoke the body's natural healing processes (coincidently "fixing" the out-of-balance condition). This treatment is not very much fun, not excruciatingly painful, but surely elicits a piquant level of discomfort when those needles are moving around in the nerves. The initial treatments were to my lower back, thinking to fix extant "out-of-balance" conditions, thereby improving the general health of my pelvic area. To this end, I'm also instructed to do exercises targeting my woeful lack of conditioning, flexibility, strength and tissue health of my lower back, hips and pelvis (I think his assessment on first examination was: "your pelvic area is a mess"). While continuing the exercises, we've stopped "dry needling", as he was not competent to extend the treatment to the muscles in the anal area (the seat of my stabbing pain on orgasm).
To further effect a more complete relaxation of my anal and pelvic floor muscles and nerves (and thereby precluding that most off-putting stabbing and burning anal pain on orgasm), I'm now using valium suppositories, inserted rectally when I go to bed. This is a just initiated treatment, so not sure of efficacy at this time.
Too many simultaneous treatments to know which is most effective, but have experienced a dramatic reduction in the intensity level of that stabbing and burning anal pain on orgasm (would characterize, on a scale of 1 -10, the pain level to have reduced from a pre-treatment level of 8-9 (excruciating) to 6-7 at this time (still not good, but definitely going in the right direction).
In conversation about this problem with my physical therapist, I had reported that this problem commenced with my RRP in 2006, and had assumed that the surgery had damaged both tissues and nerves, and was causal. Upon learning that I had been repeatedly sexually abused as a young child (starting about age 3, for several years), the therapist suggested that much physical damage might have been done at that time, emotionally repressed, with the trauma from the RRP surgery the trigger to cause/permit expression. Thinking about this a bit, may need to re-think my attribution of this effect to the competence/performance of my surgeon, rather accepting that perhaps I brought some baggage, for sure emotional, and also physical.
Regarding 2): have been advised to eschew the cock ring, for at least a while, as any constriction bearing on the tissues there, especially with all the added hardware, is probably not a positive effect. Unfortunately, no notion as to any effective treatment. (I did ask the "dry needle" therapist about treating my cremaster muscle to get it to relax, but it just wigged him out; wonder if there's an acupuncture treatment?)
Regarding 3): tried 2 different meds (Myrbetriq & Enablex) purported to help with urge urinary incontinence, with no discernible benefit. Next up is PTNS (Post Tibial Nerve Stimulation) therapy, which electrically stimulates nerves in the calves, and is purported to affect nerves which control the bladder.
May 2, 2013
Had my initial meeting with a Urology Nurse Practitioner, ANP-BC (no idea what these certify) to proceed with the PTNS (Percutaneous Tibial Nerve Stimulation) treatment purported to be 60% to 80% effective in treating "overactive bladder and associated symptoms of urinary urgency, urinary frequency and urge incontinence, when conservative therapies fail.". Not sure exactly what those "conservative therapies (which) fail" are, but assume it's the Kegal exercises for strengthening the urinary sphincters, and the pills (Myrbetriq & Enablex) I've tried.
We spend about an hour getting her up to speed with my case history (which I'm sure I've presented at least a dozen times to various health professionals, many in the same practice, so the electronic medical record (EMR) surely exists, but have been repeatedly informed that it's "difficult to extract coherently, so I want to take it myself"; of course, this will result in yet another set of notes in the EMR with her spin on what's going on with me, with no continuum of care (since it's all new every time); just plain FUBAR, IMNSHO.
Now, my referral was to initiate PTNS as a treatment for my urge urinary incontinence.
After an hour,
1) I've been offered a referral to a psychiatrist/psychologist to "help with my having been molested as a young child" issues ("we" come to agree that that is a non-starter, since that presumes that the "victim" (that would be me), believes such intervention will be efficacious, and is amenable and will be cooperative in effecting the "cure");
2) I've been offered a referral to a super-duper Urologist who actually specializes in pelvic floor trauma treatments (the referral to be effected only after a check to ensure that said referral will be recompensed by my insurances);
3) I've been asked if my current treatments at the Orthopedic Rehabilitation Associates have included Pelvic Floor Muscle Rehab (aka "biofeedback") (this involves inserting probes in the urethra and rectum, which then electrically stimulate and contract the muscles in the pelvic floor area), effecting a strengthening of these muscles, and, one presumes, better urinary control; I report "no", and recap again the treatments I've had there. The Urology Nurse Practitioner, ANP-BC, avers she will contact them, and determine if they can provide this treatment;
4) I've been assured several times that "we'll get to TPNS"; finally (after exhausting all other possible treatment modalities, it seems to me), we talk about TPNS. Efficacy is realized by 12 weekly (nearly) contiguous ½ hour sessions at the doctor's office, involves "inserting a slim needle electrode near the ankle for the ½ hour session, hooked up to a device which delivers mild electrical impulses which travel up the nerves in the leg to the nerves that control the bladder". My TPNS treatment will start Aug. 27th (the earliest time I can commit 12 contiguous weeks).
October 3, 2013
Have completed my allotted number of insurance-covered therapy sessions for pelvic floor trigger point massages and several months of valium suppositories to mitigate the stabbing, burning anal pain on orgasm; the good news is that the pain has almost totally disappeared, but the bad news is that the intensity of my orgasms has also almost totally disappeared, way diminished. Couldn't say the treatments were causal, but certainly co-incident at the very least. To be fair, have had a bit of bother for the last several months, so attributing cause and effect in the midst of our churn would be a stretch (our house was significantly damaged in the Black Forest Fire here in Colorado in early June, is still not habitable, repairs "may" be completed in a couple more months, and we've moved out of the area due to the bad air quality my wife has asthma), and libido and engagement in sex have taken a bit of a downturn.
Did start the TPNS treatments for urge incontinence, but did not well tolerate having a needle inserted into my tibial nerve, then electrically stimulated for ½ hour every week, so have eschewed that treatment.
I have just had a Medtronic InterSTIM device installed. The device is inserted just under the skin on my left buttock, with leads that are placed adjacent to the nerve bundles next to my coccyx. The electrical charges delivered to the nerves which service my pelvic area are supposed to wake up the nerves damaged concomitant with my prostate cancer removal (which resulted in urge incontinence), and improve/preclude my pissing my pants. Did a 3 day trial with the control device outside (just the leads stuck through the skin), and had encouraging results, so went ahead with the permanent placement. Early yet, but definitely have much more awareness of the status of my bladder (previously, didn't get signals that my bladder was filling up, so would leak, or all of a sudden would need the pisser NOW; NOW frequently didn't coincide with one (or a tree) being where I was, so wore diapers (yep, preemies or 1-sies) to contain the inevitable dribbling (or more)).
Haven't used a diaper (nor needed one) since mid-way through the trial, so cautiously encouraged. Enough so that I'm considering going diaperless on my flight to San Diego on Thursday (a big hassle previously, since the good TSA-folk really get wigged-out with un-natural stuff in shorts; had to remember to stop at the restroom before going through security, then stop again after to re-apply (and yes, I do know what happens when I forget to take the damned thing off)).
Still considerably tender at the incision site, and surely feel the electrical discharge, but am told awareness will diminish in a bit, to the point where I will have to consciously think about it to know it's still working. Batteries are supposed to last 5+ years, perhaps as much as 10, with the caveat that I will know when they need to be replaced (I'll start pissing my pants again gotta be a better solution than that).
One of the "negative" side-effects is that the nerve stimulation is not precise to the bladder nerves (technology hasn't made it there yet), so can get sensation in all sorts of interesting places (scrotum, penis, anus, buttocks, legs, etc., etc.; my urologist mentioned that "some" guys even experience orgasm), with the sensation area possibly changing over time and my body position (the trial leads were smooth wires, so migrated around easily; the permanent ones have barbs on them to help keep them positioned, but can still migrate a bit, especially 'til scar tissue builds up). Biggest reported downside is that some have been distracted by the inchoate sensations.
I have an external control device which allows me to select various protocols (continuous, intermittent, and frequency), and intensity, but too sore yet to get too adventurous).
Sex has been proscribed "for a while" (much to my wife's chagrin); when we met with my urologist (probably 30-ish, but looks 16, and clearly not accustomed to dealing with sex questions from grandparents), he turned beet red and stammered and stuttered, and finally acknowledged that he didn't know, when she queried as to how long before we could have sex again, and said he would ask the Medtronics "Expert" who was assisting with the implant not much confidence generated when your doctor is deferring to the equipment manufacturers rep. for medical direction. Annie (the rep.) assisted at both the trial and implant surgeries (I had to be awake enough that I could tell them if I was feeling the nerve stimulation so that they would know if they were placing the lead in a useful location, so I got to hear things like: "Annie says to the doctor: this time I want you to insert the needle further down towards the coccyx"; "Annie says to the doctor: "push the needle in until it hits bone, then pull it back a bit"; Annie says to me: "do you feel that?; where do you feel that?; this will hurt a bit, but then it will be over".
There is something deeply disturbing with medical equipment manufacturers managing medical care; this reality does not jibe at all well with my (previous) perception that my care was in the hands of a medically trained and experienced doctor whose mission was firstly my well-being (and somewhere way down the line making enough money to stay in business) rather than a business whose primary goal is profit. Really became aware of this for the first time with my penile implant, where the rep. for AMS assisted with the surgery to ensure "that the prosthesis was correctly sized and implanted". Just seems like the barn door is open way too wide.
On the plus side, so far, results are positive.
January 2, 2014
Had roto-rooter jobs on my right hip (Dec. 2013) and left hip (Jan. 2014) (repair torn labrum, grind off bone spurs, and clean out assorted detritus) and mobility limited to crutches; my wife's first question to surgeon: "when can we have sex again?". (Answer: wait at least a few days, and then you have to do all the work".)
Had a PSA-check and additional blood work for testosterone levels. Yet another big sigh of relief when the results were "undetectable".
Unfortunately, testosterone levels were very low (170ng/dl) even with the Testosterone Replacement Therapy (TRT) I've been on for several years. In the PCAI forum there had been comments that CLOMID (an off-label use) was sometimes effective in increasing testosterone levels by effectively eliciting the testicles to (re)start making testosterone (with TRT, the testicles frequently stop making testosterone); I asked my urologist about that, and he was unaware of any prescribed treatment for this condition, but did provide a referral to an endocrinologist.
An additional response to TRT is for the testicles to shrink in size. As noted in April a year ago, " Both testicles are tender (more-so the right, which is co-habitating with the pump), with a fair amount of discomfort much of the time. Additionally, my testicles don't stay in my scrotum, but move up into my groin, which can be uncomfortable (I use a cock ring to keep them in the scrotum)."; this condition is labelled "retractile testicles". I asked my urologist and the endocrinologist (who was also unaware of CLOMID being used to (re)start testicular testosterone production) if I might then expect my testicles to return to their normal size (my thinking is that my considerably reduced in size testicles easily migrate out of my scrotum; if larger, then perhaps they'll stay in my scrotum, perhaps a serendipitous physical effect for this nagging problem, as well as in increase of testosterone).
April 4, 2014
Have met with endocrinologist and he ordered more blood tests, with a treatment protocol to be prescribed based on the results of the blood tests. I assume I'll be starting CLOMID later this month to see if it's effective, and an increase in the dosage of AndroGel.
The InterStim device continues to be effective in precluding incontinence, with just one "oops" since having it installed in Nov. 2013: after several hours walking thru the French Quarter in New Orleans in the lead-up to Mardi Gras, with many stops at various bars to fill up my "to-go" cup (cold and rain didn't help, either), was in the elevator going back to my room chatting with my friend when I started leaking; not a total gusher, but enough to wet my socks, in any case, with no particular notice of impending need. Sure surprised me. Nevertheless, been a most welcome success. Now the device technician and I are trying various programs to identify the 4 (limit of my device) I'll keep recorded: some of the programs are irritating after a bit, so want to isolate those that are not irritating, are effective in controlling the incontinence, and provide interesting sensations.
Have had a series of blood tests to determine if the CLOMID would be useful in restarting testicular testosterone production, but those tests showed that my pituitary gland is no longer producing the hormones the CLOMID is meant to stimulate, so that's a no-go.
Have doubled the amount of Androgel I'm applying; free testosterone is now in the normal range.
Since Jennie Jo has previously communicated (very clearly) that any urine leakage by me during fellatio is totally unacceptable, I have been constantly on edge to ensure that I do not leak when having vaginal sex. One of the guys in a PC forum commented that his wife was really put-off by his urine leakage when having an orgasm, to the point that they were no longer having sex. After this comment, it occurred to me to explore with Jennie Jo as to whether urine leakage during vaginal sex would be a problem for her; to my great relief, she indicated that it would not be. One more impediment (even though minor) to free and enjoyable sex removed; we now just use a towel beneath us.
Have had a reemergence of the stabbing burning anal pain on orgasm over the past several months; at first, just noticeable, but over time gradually increasing in intensity. Since these treatments were efficacious last year, have re-initiated the pelvic floor trigger point massage, and doing a month of valium suppositories to determine if it will all quiet down again. The orthopedic therapist has suggested that this anal pain flare-up may be exacerbated by my escalating right hip discomfort (something about cartilage loss in the hip joint and osteoarthritis causing pain sufficient that the hip will be replaced within a couple of months), re-triggering those most unwelcome spasms.
What with travel over the summer, my protocol of pelvic floor trigger point massage and valium suppositories was fragmented and interrupted several times, and was ineffective in providing relief such as I had obtained in the first cycle. Had my right hip joint replaced early in Sept. (with the serendipitous result that my discomfort in my left hip also went away expect that's because I'm no longer favoring my "bad" hip, and probably also a consequence of my orthopedic surgeon lengthening my right leg ¼" to be the same length as my left leg).
Have started (with a different physical therapist) another cycle of pelvic floor trigger point massage to see if the now excruciating anal pain on orgasm (when I'm really aroused) can be mitigated. On doing my initial physical examination, she identified scar tissue and adhesions at the sites of my RRP surgery scar, of my penile implant scar, and many obvious trigger points in my pelvic floor muscles. She is optimistic that she can reduce the scar tissue and adhesions and effect considerable relief for me over the treatment cycle.
And she noted that she also has treatments for the chronic discomfort I have with my retractile testicles, and started today with physical therapy to stretch and relax the cremaster muscles (these are the ones which cradle the testicles and are attached to the lower abdominal muscles, and are the ones which "retract" a guy's testicles). I am really hopeful this will effect some relief for me.
The repeat cycle of pelvic floor trigger point massage to see if the excruciating anal pain on orgasm (when I'm really aroused) could be mitigated was beneficial, but the really effective treatment was to restart valium/baclofen suppositories, which I am continuing, perhaps forever; pain is almost totally gone.
Treatments for the chronic discomfort I have with my retractile testicles (physical therapy to stretch and relax the cremaster muscles) was ineffective; the therapist was still willing to continue, but we started travelling again. Will revisit treatment we return from travelling.
Late last year I started noticing discomfort in my lower abdomen, eventually becoming chronic; felt like a bladder infection. Seemed to increase as my bladder filled up, and subsided when I urinated. But also more discomfort when I deflated my prosthesis.
My oldest brother having had prostate cancer, kidney cancer, then bladder cancer (dead after 2 years), I went to my urologist and suggested 3 possibilities that I could think of:
1) Bladder cancer
2) UTI or bladder infection
3) Adhesions around the reservoir for my prosthesis (important to pump-up every day to preclude adhesions forming making the next erection pump-up uncomfortable; being a bit on the lower end of the size curve (as you know), I don't work hard to deflate to a minimum size, just release fluid until it equilibrates, so thought that some adhesions might have developed).
Based on the family history and my angst, he ordered a contrast CT scan of my abdomen and a bladder cystoscopy (there was no sign of any bladder infection or UTI). Got to watch the cystoscopy (fascinating what your insides look like!!!); no abnormalities observed, all apparently working as designed.
BUT THEN, he sat me down to discuss the CT scan, and showed me the kidney tumor (2.5 x 2.1 cm); "most likely cancerous!" (also the radiologist's evaluation); several treatment options available (cryo and radiation not very effective, AS (no way I want the damn thing out!!!), or a tumor excision (partial nephrectomy, just enough to ensure margins are clear I told him: "Don't get cute, I'll be royally pissed if the margins come back "not clear")).
Kidney surgery scheduled for March 3rd; pathology will dictate next treatment options. Chest XRAY did not identify any lung, adrenal gland, lymph node or other metastases, so expectation is that this cancer is organ confined, and small enough that excision will be effective in treatment.
The kidney cancer was asymptomatic, so just serendipity that it was Dx'd while small; original complaint of lower abdominal discomfort as yet unresolved, so setting up a consult with a urologist specializing in penile implants and attendant problems.
Wayne's e-mail address is: email@example.com