Post-prostatectomy- my experience and relative facts

[Cajun Jeff]

I was 56 when this show started for me. What the hell! Like you tried the pump. Useless fir sex for me. The bands hurt like hell. Pills partly worked. I finely forced the Dr to injections. I hated injecting but the results were worth it. Good hard. Fun sex. I investigated implant. My insurance would not cover it. So when I got to Medicare I started looking for the Dr that I wanted.

Jan 13, 2020. Had AMS LGX installed. Best decision of my life. I’m back in the game. I am a MAN Again!

I was lucky, no pain to speak of. Little swelling and some bruising.


If you want more info private message me.

[Motorheadrulz]

^bump; resurrecting this post with new info. We're all in this together...

So I'm passed my 1 year post RPP and my PSA is still <0.01, so I'm good to go for now. My testosterone is still in the gutter- I'm a zombie and can't sleep.

The incontinence has improved- but I still piss myself when coughing, sneezing, and sometimes just sitting- without warning. I stopped wearing light colored slacks to work- only black/blue slacks; easier to hide a piss spot. Riding my motorcycle is adventurous- sometimes when I brake, my weight shifts forward and I leak. Frustrating!!!!

We hate the fookin pump! We would rather abstain than try to get freaky. We are both tired of pausing to repump during sex; we've given up on bjs, handies, and almost every position. The c-rings are painful, they chafe mine and my wife's skin, and half my scrotum gets caught in the pump (see my other posts...) She hates the purple pecker and that it causes me pain. Doggy works occasionally, but in an unsatisfying, emasculating, disappointing attempt at pleasing my wife.

I gave up on the Cialis- after 1 year I still have no blood flow to my best friend. None of the ED meds worked, so I quit.

I still have no nerves firing. This is probably the most frustrating. It doesn't matter if I'm getting any stimulation- there is no feeling. Occasionally, I'll get a quick, fleeting flash that I might have a Big O. So when that happens, I get a lightning fast orgasm sensation, but I'm really just pissing into my wife (and she fookin hates that!) The pelvic floor doesn't throb or pump. My wife made an interesting observation- when you squeeze your finger until it turns purple and goes numb, isn't that same as what the c-rings are doing?

We started counseling with a competent expert; it's helped that I have another person not named my wife to talk to, but he can't fix much. Our gameplan is to to fix the physiological issues, then work on the sexual/emotion wellness when I have more energy and patience to cope. Get my energy and sleep back in rhythm, then some things should clear up.

I have my 1 yr follow up with Uro soon. I will be advocating: 1) testosterone pellets 2) Bi/trimix injections 3) how to repair the nerves (I don't expect any answers than "wait for it").

Man, this sucks! But I'm cancer free.

BTW- has anyone found any pixie boner dust yet?

MHR

[bldoink]

Pixie boner dust for me is mono-mix injections.

Did you by chance try the walking therapy for incontinence I described in a previous thread you participated in?

What I found helped my incontinence the most was taking walks working up to 4 miles unprotected by pads. Of course I started with shorter walks. Walking with relatively thin shorts and no pad greatly increased my motivation to not pee myself. There were times I had to dive for the bushes and times I did have a modest wet spot. Mostly I faired pretty well with modest leaks that didn't imperil my modesty. I did test myself resulting in most leaks close to the house as I continued to increase my range. I eventually got where I could do the 4 miles without pissing myself.

Obviously my experience wasn't a scientific study. And I still do have very minor leaks occasionally, especially when fatigued and doing hard physical work (sawing, chopping, hauling, lifting). I'm thinking my walk method exercised different muscles or at least exercised the muscles differently from that of the Tens or traditional Kegel exercises.

Climacturia, the inappropriate peeing during sex, can be another related problem. That problem I think is best addressed by solo practice which in my case helped a bunch. It involved learning some technique as well as probably some muscle development. But I guess that's a different topic.

[Motorheadrulz]

This past year has completely sucked donkey dicks! A few months after the RPP, I broke my foot. Then covid pushed my knee repair to late summer. So along with all the goddamn RPP rehab, I’ve been hobbled and worthless. I just recently started using the stairs at work again.

I’ll follow up after I get on testosterone and injections.

[Motorheadrulz]

So it’s been a while since I posted and 21 mo post-RPP, but a few quick updates and a question for the gallery:
- PSA and testosterone are good. I got back on the pellets.
- Insomnia is still a fooking beyotch, though...
- No blood flow to my best friend... nada, zilch, none whatsoever. Trimix works, but wife has been sick and my turtle is stuck in the shell for over a month. I thought about injecting just to get a stretch, but didn’t have the energy.
- the nerves still aren’t firing. See previous comment... nada, zilch, etc.
- -Many on this forum reported 50/50 on getting real blood flow and nerves back; not so much for me yet.
- I’ve lost about 1.5” since the RPP; I did a pump vs trimix test. Max pump gets me stretched with pain; trimix gets me useably hard, but shorter.

Now the lead in to the question:
I started seeing a physical therapist for pelvic floor retraining. I’m still frequently leaking and during playtime. Next week she is bringing in a little green alien to insert an anal probe to measure the floor strength and work the muscles.
- has anyone had this and did it work?
- how long was the treatment? I have 8 appts scheduled.

I’m still sick of this bullshit, but have no choice. This may be a marathon, but I’m stuck on mile 8...

Thx,
MHR

[bldoink]

I empathize with your frustrations and can relate all too well. I wish you the best and pray you can find some comfort and solace. I don't have anything new to offer.

[Motorheadrulz]

^bump

I've been seeing many bubbas on here asking for help coping with their prostate cancer diagnosis and the inevitable "what should I do" dilemma... so I bumped this for the newbies.

Quick update:
- all the muscular/skeletal issues are resolved. I'm back to work and riding my bikes as much as possible
- I'm still in pelvic floor therapy and using a back door estim ~3x/wk. It has really helped with not pissing myself or in my wife, but there are occasional accidents
- the nerves and blood flow are still on vacation; would really love to see that recover soon (yeah, right... it's been 2 years and nothing...)
- testosterone and PSAs are gtg. Insomnia is still a beyotch.
- trimix works and will continue until it doesn't. I feel implants are a last ditch effort (no offense guys...)
- still hate the f'n pump

[ftwabeck3533]

Motorhead, I' knew I've been away from this site for awhile -- didn't realize it had been this long. I hit the magic 24-month post RP milestone last month (when the pecker is supposed to go BOING on it's own again....that didn't happen).

2/16/2022 Updates

1. How long until you got control of the incontinence?
Peeing in my pants is a distant memory. I think I was fully continent in about 8 weeks. I firmly believe you must treat the bladder as a muscle. Push it to the max, often and frequently (as in, do not pee frequently). I drink coffee, water, beer, vodka ... every day. I pee about three times a day, and rarely at night after going to bed.

Very rare issues -- typically late at night after too much alcohol. And during sex. Yes, always urinate before jumping in bed with your wife/partner.

2. Did the pills work and when?
Yes and no. I have taken a 20mg Sildenafil every day for two years. Lately I have taken it at night to assist with nocturnal erections, which are more frequent and stronger. I think this regimen has helped me. The "challenge dose" of 100mg for intercourse was a big fail though.

Rarely use the 100mg dose for sex, although had successful sex a couple weeks ago with 5x20mg pills of sildenafil. Still taking 1x20mg at night for penile tissue health.

3. Did pumping work and when?
No and never. I bought manual pump and all it brought me was frustration. After a few weeks of giving it a try during daily showers, it went on the shelf and gathers dust.

Ditto above, nothing new to add regarding pumps.

4. Did injections work and when?
Injections have been my salvation for achieving an erection. In May 2019 I asked my Urologist for an Rx for Trimix. I shoot up a couple times a week, and 90% of the time I have a solid erection lasting 30-60 minutes. Lately I have had a couple misfires, either hit a vein and/or my frozen syringes are losing efficacy. When I get a new 5ml prescription, I pre-load about 35 syringes (0.14ml each) and put them all in the freezer.

I have started a new batch with new compounding pharmacy. Does not seem as potent as the pharmacy which no longer supplies trimix. Increased dose to 20 units (0.20mls). Works, but erection not as long lasting.

5. What else worked- electro-stimulation, voodoo dolls, pixie boner dust, etc.?
Stretching, pulling, stroking, caressing my penis every day, multiple times a day. Closing my eyes and envisioning foreplay with breasts and vaginas often results in a 90% hard-on. Use it or lose it. Get the blood to the tissue, whatever it takes!

If you're not doing the above, you are going to go backwards, as in the "turtle" will be in your underwear soon.


6. Did you seek counseling; did it help?
I encourage counseling -- there's no professional therapists where I am located. My wife has been incredibly supportive, and essentially provides the mental outlet (as well as the physical inlet) I needed to keep a positive attitude and optimistic outlook.

Ditto, double ditto, above.

If you need more detail, private message me.

And one final comment, I do feel nerves continue to heal (RP was October 2018) and unassisted erections are a future possibility. No delusions of grandeur, but hope springs eternal.

[richkez32]

RRP 2016. No erections after then 2018 radiotherapy to prostrate bed due to the cancer returning then for the next two years still no erections. So four year since RRP Then sometime in 2020 Woke up in the morning with a raging hard on. Just like that out of nowhere. So was making the most of them but my libido was low. Blood test showed low Testosterone. So was put on Testogel That made a bit of a difference with the libido. But mid 2021 a routine blood test showed an high psa so testosterone replacement stopped. No change in the penis department but back to low libido. And psa still rising. And testosterone level 0.7 but can still a good erection when needed lol