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"Use it or lose it" prostatectomy?

Grinder
Posts: 437
Joined: Mar 2017

I had robotic prostatectomy in June. Everything has gone smoothly and I am grateful to God and the surgeon for the success. 

But I do have a question of a personal nature for others who had similar. I have heard the expression "use it or lose it" concerning E D after surgery.

Was it necessary to use meds or artificial stimulation devices to recover function eventually? I don't want to take cialis or other, not thrilled with the vacuum device. I guess what I'm asking is, will it recover on its own after a year or two, or does it HAVE to be stimulated or it will not recover? "Use it or lose" it is a great slogan for drug companies and urologists to keep business going, but are drugs and or stimulation really necessary to recover?

Everything else... PSA, incontinence, some slight erectile function, have all been great and am very pleased with results

Pre-op my PSA was 16-18 (!) and had struggled with recurring infection prostatits and BPH for ten years. Biopsy showed dormant cancer cells also.

My neighbor had also just died of prostate cancer. Super nice guy too.

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

My urologist recommend use of the 'pump', to begin just after the Cath was removed. I never got one but within two months of surgery I was having sex with the misses with the aid of Trimix injections. Healso recommended beginning Cialis right away.  It is possible (I have been told) o have some atrophy of the vascular tissue, so the pump and at least Cialias are recommended by both.  two years past DaVinci, I now have spontaneous sex with no drugs, etc. Good luck.

Grinder
Posts: 437
Joined: Mar 2017

Thanks, man. Nobody mentioned the possibility of atrophy, but that may be the source of the "use it or lose it" slang term. Great you recovered from E.D. so quickly. Mine may be dragging a little because my prostate was around 250 cc or ten times normal size... Was one of "biggest they had ever seen". So my recovery has been very good so far, considering how much they took out.

The year before surgery was a hell of catheters,, emergency room visits, infections, and lots of blood. Was taking Flomax and Cialis daily just to keep bladder slightly emptied. Besides BPH, I had a recurring staph infection prostatitis that cipro couldn't fix. Then the biopsy found four of twelve tested positive for PC. 

If anybody else has a recommendation on the E. D. would love to hear it too. Still don't want to take Cialis since I took it daily for so long just to keep from catheterizing or wearing a Foley ad infinitum.

After reading other posts here, I really can't complain because the Davinci surgery was like a governors pardon from a prison sentence.

BTW... No naturopathic remedies worked for my enormous, staph infected, cancerous prostate. Some people recommended saw palmetto and pomegranate. Maybe for simple BPH but didn't help me.

BTW... There is a website that lists the history for local surgeons including recorded post op side effects. Mine was highly rated, and he was an expert considering the complications of my surgery. If i can relocate it I can post it if anybody is interested.

Lgould48
Posts: 1
Joined: Mar 2017

I'd be interested in searching that website, if you can find it.

Grinder
Posts: 437
Joined: Mar 2017

Hi Lgould... Posted it on discussion board under Surgeon Scorecard. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

Grinder,

My first remedy for total post-RP Ed was Trimix, a self-administered shot. It works for erection in about 85% cases of total ED.

The needles are tiny. I found it to be painlessly, but some guys say they could never use Trimix. It worked instantly for me. The test dose in the urologists office sent from lifelessness to full post in 15 minutes. Ask your doc.

I had recurrencet prostatitis for years. Thankfully, that is history now...It went away with the gland. Stricture also now has to be over,

 

max

Grinder
Posts: 437
Joined: Mar 2017

Prostatitis was a b*tch for sure. First time I had it, antibiotic knocked it out. After that, they gave me cipro which just wasn't as effective and was a pain in butt to use, and caused black tongue and neuropathy. Kept increasing in frequency too over ten year period. My prostatectomy was as much about that as it was the PC. Double jeopardy. Couldn't travel overseas or long distances for fear of flare up... Then one day the infection, the BPH and the PC decided to be a tag team and hit me all together at the same time.Frown

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

An article discussing Trimix. I chose it at random; I have no affiliation with any pharmacy or medical group.  Trimix is only available at compounding pharmacies -- pharmacies where the pharmmacists stilld do actual grinding and mixing of drugs.

It is HIGHLY EFFECTIVE and totally safe.  It does require refridgeration and training by your doctor or his staff before use at home.

http://www.newyorkurologyspecialists.com/ed/ici/

max

Grinder
Posts: 437
Joined: Mar 2017

After reading what you said, I went further into these archives and the consensus is pretty much that the E.D. won't recover on its own without something to draw blood into the region and restimulate the nerve neural activity. I will probably stay away from the oral medications though and try a combination of the pump, sex, and looking into the externally applied meds like trimix. I took Cialis and Flomax every day for months and while it worked just enough to keep a tiny stream open, I don't like the thought of another six months to a year of daily doses. And, my insurance won't cover anything E.D. related! It covered everything PC related and BPH and prostatitis related, but even though the Cialis was BPH related, it covered the Flomax but refused the Cialis. And, the post op appts with the surgeon and urologists were covered, but not urologists for E.D.... Its like they knew which Urology appts were PC related and which were E.D. related. Weird. And daily 5mg Cialis was $10 a hit. Ouch.

I guess that sums it up for this thread unless someone has any more insights. Wish I'd found this sooner, but better late than never.

Clevelandguy
Posts: 410
Joined: Jun 2015

Hi,

The title about says it all.  Get the blood flow into the area for healing by whatever methods.  I used Sildenafil Citrate 20 mg oral pill which is a lot cheaper than Cialis.  The Sildenafil really worked for me.

Dave 3+4

MK1965
Posts: 161
Joined: Jun 2016

Grinder,

Penis needs to be excercised as any other muscle or will atrophi. I totaly agree with "use it or loose it" with full understanding of consequences. I see already couple of good advices.

Good for you, you already fell life is there. That is a big plus.

I also had RP 5 moths ago. Tried and still using Cialis 10 mg daily with once a week full dose. No response at all, not even slightest sign of life. Started using pump 2 weeks ago with no success at all. After presure released it goes to soft in les than 30 seconds, with ring lost for 2 min. 

The hardest part is to see my penis disapiring in front of my eyes. Already lost 2 inches and continues.

will it ever stop, who knows?

I am trying with no success. Feeling terribly, I lost my manhood at 52.

MK

DavidH1958
Posts: 4
Joined: Mar 2017

MK1965, I feel your pain. However, there is life and sex after a flacid penis. You have to start thinking outside the box to get there though. I too was 52 when I was diagnosed with PC. RP in June 2011. It helps to have a loving woman in your life that is willing to work with you to find out what works. Think about sex toys. Think about lots of foreplay. Yes, orgasms are possible even with a flacid penis. Thank god for that or we all would be lost.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

You do not mention Trimix, Mk.   My first injection in the urologist's office sent me from dead-to-dread in 12 minutes.  3.5 hours later, they had me start Benadryl because it wasn't going down.  If it had not gone down in an additional 30 minutes, I would have had to go to the hospital.  They adjusted the dose downward thereafter.

Trimix routinely works for men with zero reaction to Viagra or Cialias.   The first use might hurt a little, as tissue is beong stretched open that had in a sense "withered."  The pain goes away after one or two uses, and was never severe, as the link article I provided above notes.

Guys in the past here have responded that they could never self-inject in the penis.   Oh well.  The needle is tiny, and I am told it is about like what diabetics use for daily stomach injections.

Trimix is not 100% effective, I guess nothing could be. But it is usually very effective even when oral meds fail completely.  I am not "selling" this compound, just relating what I have learned via reading and use.  it does require a perscription and training from your urologist.

max

DavidH1958
Posts: 4
Joined: Mar 2017

Max Former Hodg..., I did use Tri-mix and my prick did ache everytime I used it. It would also last too long. Not to mention the difficulty of doing this while your libido is in the basement.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

@Grinder said: " I took Cialis and Flomax every day for months and while it worked just enough to keep a tiny stream open, I don't like the thought of another six months to a year of daily doses. And, my insurance won't cover anything E.D. related! It covered everything PC related and BPH and prostatitis related, but even though the Cialis was BPH related, it covered the Flomax but refused the Cialis.   .  .  .   And daily 5mg Cialis was $10 a hit. Ouch."

I've been taking Flomax and Cialis daily for about 6 years now. 

Started on Flomax after my CK treatment in 2010.  Refused to take it before then because it caused retrograde ejaculation which made my ejaculate disappear.  Didn't like that.  After the treatment, it didn't matter.   The ejaculate was gone anyway after the prostate was radiolocially destroyed.

Flomax is covered under insurance because it is deemed medically necessary to treat BPH and related symptoms, such as urinary urgency and frequency. 

Cialis and other ED drugs are NOT so approved because Flomax and other such drugs (like oxybutynin, which I also take) already exist and because "getting it up" is not deemed as "medically necessary" by those in control of such decisions.  This is despite the fact that Cialis claims to also have Flomax type benefits. 

The decision itself, however, I believe is largely financial because the number of men who would want the drug and the insured cost of those drugs would probably be enormous.

In any event, if you are looking for a cheaper source of ED medication, there are overseas pharmaceutical sources from which you can purchase cialis, viagra and all other oral ED meds.  Don't think trimix would be available from such sources, however, but then again I've never asked.

The company that I have been using for years to buy my 5mg daily cialis is ProgressiveRX.  The cost for a 90 day supply of 5mg cialis from ProgressiveRX costs just $53.99 or just under 60 cents per pill.  This is compared w/the $200+ that I was paying before.

See: https://www.progressiverx.com/store/home.php

As far as I can tell physically, the 5mg cialis works.  I did stop taking it for awhile and my ability to get it up diminished during that time and returned after I started taking it again.  However, when I tried the 20mg version, it did not seem to have any additional benefit and I have stopped taking it.

ProgressiveRX does have a 100% satisfaction guarantee return policy.  So, if you're not happy w/the meds they send you, you can get your $ back.  They have an office in Vancouver, WA but the actual company, which makes the drugs, is based in India.

When my preciption is due for renewal I get emails directly from the staff in India, not WA.  Their communication is good, shipping is reliable and prompt (allowing for a least 2 weeks for delivery from India) and I've never had a billing problem with them.

There are, of course, other such companies selling discounted ED and other meds from overseas. 

I have no financial interest in the company but I have dealt w/them as a consumer for many years and, if you are interested in buying cialis and other meds at a discount, I would highly recommend ProgressiveRX.

Good luck!

hopeful and opt...
Posts: 2218
Joined: Apr 2009

I've read thata dosage of  10mg of cialis is appropriate; masterbate, use vacuum pump, injection with trimex or another drug.  Speak with your surgeon about appropriate tools for recovery.

To avoid ED it is necessary to do the above during the first year.

If all else fails, "read Playboy magazine" LOL

 

Grinder
Posts: 437
Joined: Mar 2017

I think what everybody said here is very useful advice. I know from my own experience that orgasm is not an issue with post-op recovery like incontinence and E D. In fact, it was way better. Weird. The ginormous prostate probably had something to do with that too.

BTW... I have not had UTIs since either. That was another side effect of prostatitis and BPH. And naturopathics did nothing for it.

Since we are all adults here, we can discuss these issues openly, and that makes this a very informative forum.

Right now, I'm flying solo because we have strict rules about sex at my house. I have been passing the pump off as a "therapeutic" device, but it looks suspiciously like a sex toy, so it is kept out of sight out of mind. :)

But all in all, I am light years beyond last year's misery, so I cannot complain. I will admit to something. I was afraid something would happen to prevent the RP. Like some radical socialist change to health care like Venezuela's, or some gridcrash event that would shut down the power grid, or some economic collapse. If anyone reading this has PC and is afraid of getting the RP, all I can say is, after what I went through, you should be afraid of NOT getting the RP.

 

 

ggt
Posts: 1
Joined: Apr 2017

Before my surgery on 3-16-2017, my doctor recommended I read the following book: "Saving Your Sex Life - A Guide for Men with Prostate Cancer" by John P. Mulhall, M.D., Director, Sexual & Reproductive Medicine Urology Service, Memorial Sloan-Kettering Cancer Center, in regards of what is one to expect as part of a penile rehab program. I found it very informative for anyone who has just been diagnosed or who has just been treated.  Since my nerve sparing (Open vs. DaVinci Robot) RP surgery, I have been on 5 mg Cialis daily in the evening prior to bedtime. At my one month follow up visit, I will be trained on how to self inject the Bimix medication, which I will then do for 3 times a week until my erections return on their own which may be over the next 18-36 months. I am optimistic as I had a surgeon that has removed over 7,000 prostates thus far in his career and has just about seen it all.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

For the information of all readers:  'Bimix' mentioned here by ggt is simply 'Trimix,' minus one of the drugs in Trimix, as one might expect. I don't know why some doctors choose one, some the other.

GAMARATHON
Posts: 1
Joined: Mar 2017

Sirs,

I had nerve-sparing DA Vinci surgery seven weeks ago. Three weeks ago I started on ED therapy. I take 20 mg/daily of Sidenafil. I use the vacumn pump twice daily for "exercise" plus now I use a vibrator once daily. I've not had sex yet, having tried 3X with up to 100 mg. Sidenafil. BTW I'm 66. I had a Gleason of 4+3 and a Pre-Op PSA of 7.08. The Post Op Path said it was organ confined. Back to ED Therapy, the vibrator is giving me orgasms more often. My <content edited by CSN Support Team> has grown in diameter, judging by the fit of the vacumn pump. I've had one slight nocturnal erection the day after I went for a very easy run. I have some stress incontinence and still do Kegels 5X daily. BTW, got my first post-op PSA today and it was off the scale on the low side!!!

MK1965
Posts: 161
Joined: Jun 2016

Gamarathon,

You are very lucky guy to start expecting nocturnal erections at very early time. Great to hear something like that.

You will regain your erectile function preatty soon.

i had my RALP 7 1/2 months ago and by now I did not experienced any spontaneous response not even slightest sign of life in my penis. I am 52 and never had problems with achieving and maintaining erections before surgery. I am very active and healthy and not on any meds. My surgery was nerve sparing according to my surgeon but I doubt it was. Was told, I am perfect fit for robotic surgery but my post surgical experience is very far from anything perfect.; on far opposite side.

I did not have success using Cialis and VED. Started TRIMIX in April and TRIMIX gives me erections but my erect penis looks pathetically small. I lost 2 + inches of length.

Not so good feeling. I wish I never had surger. QOL is greatly degraded.

MK

Clevelandguy
Posts: 410
Joined: Jun 2015

Hi, 

I took Sidenfil also and if worked a lot better for me than Cialis or Viagra.  A lot cheeper also.

Dave 3+4

Old Salt
Posts: 720
Joined: Aug 2014

Generic Viagra = sildenafil

Grinder
Posts: 437
Joined: Mar 2017

LaughingLaughing

Hey thanks for all the info on a touchy subject . :D

Now if someone could recommend a good mohel, since I lost two inches I have a foreskin again. :D

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

Grinder,

Try Kiryas Joel, a little town in Orange County, NY, just up the Hudson outside NYC (a quick ride on the Metro North).    Over 90% Hasidic.  And there is always Brooklyn / Crown Heights.  I'm not Jewish myself, but do herald from Eastern Europe ancestry, and I studied Orthodox Judaism as a history grad student in the Upper East Side decades ago, while living with my brother-in-law in Poukeepsie -- took the Metro into town daily. A fascinating culture. I do eat mostly kosher; their meats are in my opinion the most sanitary and healthy.  And I dig that Rock the Casbah hair.

max

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