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Rehabilitation after prostate removal

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Posted 7/31/2018 6:18 PM (GMT 0)
It has been 8 month since surgery. Had one nerve side spared. I'm taking 20 mg Sildenafil per day and 100mg on the 7th day. I have used the pump to get blood flow to the penis and injections. I'm having pain with the 2+ erection. Starting to give up hope?
Posted 7/31/2018 7:08 PM (GMT 0)
Don't give up hope. I had surgery about 21 months ago, and I began to show real improvement around 15 months, with the aid of drugs. Am I what I was prior to surgery? No. But it is rare for those choosing surgery to regain the same level of function.

In my case, I didn't stick to the rehab program until about 10 months after surgery. Honestly, I didn't feel much like doing anything down there for at least 3-4 months afterwards.

I've read that the average patient will regain adequate function, with drugs, between 1 and 2 years post surgery. Some people take even longer. The surgery traumatizes the nerves, and nerves take a very long time to heal.

You might want to look up a book by Dr. John Mulhall. I think it's called Saving your Sex Life. He is the urologist specializing in penile rehab at MSKCC in NY. You can find it on Amazon. Lot's of good info there.

Keep up the rehab. Good luck.
Posted 7/31/2018 7:16 PM (GMT 0)
Thank you I will look into his book.
Posted 7/31/2018 11:48 PM (GMT 0)
Patients at MSK regained some erectile function as much as 4 years after surgery:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4605865/
Posted 8/1/2018 1:28 AM (GMT 0)
Keep working it. The Mulhall book is good and there are docs who specialize in this - at some point you may want to talk with one.

8 months is still in the possible improvement area.

If down the road you're still having problems, there is the implants that you can get.
Andrew
Posted 8/1/2018 2:30 AM (GMT 0)
Rpilot--
I'm coming up on one year post-RP (August 10) and I've seen substantial improvement just in the past 3 months. Even penetration recently. Similar sildenafil protocol. Also incomplete nerve sparing, tho perhaps a bit more than you (full on one side, partial on the other). Still, if you're looking for reason to hope, maybe my example can give you some.
--SP.
Posted 8/1/2018 3:04 AM (GMT 0)

you said...
I'm having pain with the 2+ erection.

I'm not sure what you meant by this? Maybe everyone else understands.

Anyway--I had pain associated with erection for years. It was quite sharp at first, and gradually decreased, but was pretty much--a pain. I learned to have an orgasm without full erection.
Posted 8/1/2018 3:09 AM (GMT 0)
I was 75 at RARP. Chose RP because I wanted to go hunting with my grand kids and son in the next season. May not be another season. URO told me he removed ALL my nerves. So I chose implant. At my age there may not be another year to wait. With an implant, if you get natural nerve erections, which some do, you hit the jackpot. Implant healing is not for sissys but most guys say, I should have done it sooner.
Posted 8/1/2018 8:12 AM (GMT 0)
Thanks guys! Want I meant, with injections I'm having 2+ hours erections that hurt. I'm 50 years old. Perfect health. I had a glesson score of 9 before surgery and 6 or 7 after. The MRI said the cancer was within the prostrate, but when I had surgery the doctor didn't like way it looked, so he took one side of my nerves.

What I really like to get from everyone, the rehabilitation that your doctor has prescribed. My doctor wants me to try to get erection by injections once a week to keep good blood flow. It is hard to do when it is painful. I'm just now stop using pads. If I drink a lot I have to be careful. So, I guess I'm still healing.
Posted 8/1/2018 1:46 PM (GMT 0)
Reduce the amount in the shot - you shouldn't be having erections last that long.
Posted 8/1/2018 2:00 PM (GMT 0)
Rpilot,

Are you using trimix for your injections, or a brand name shot like Caverject? Caverject contains the single drug Alprostadil which is the most effective injectable ED drug but also the most likely to cause an ache. Trimix (which you get from a compounding pharmacy) combines three drugs to get the same erectile effect with less Alprostadil, and usually less pain.

In any event, if your erections last more than two hours you can probably reduce your dose which might help with your pain.
Posted 8/1/2018 2:34 PM (GMT 0)
Trimix, but they even made a 2 compound dose which seem to not hurt as much but didn't make it hard. I'm going to a mens clinic tomorrow which is expense, but maybe they can help. I hope by getting blood to my penis it will one day work again?

Thank you!
Posted 8/1/2018 2:46 PM (GMT 0)
rpilot,

We have guys here who use bimix (the two drug compounded injections) and seem to do well but bimix doesn't work for everybody. It's a good sign that trimix works well for you (except for the pain) since it suggests your hydraulics are in good shape and should come back on line when the nerves heal. They probably will heal eventually (on the side that was spared). No guarantees, of course, but most guys with one-sided nerve sparing get something back.

I used to get a bit of an ache from trimix -- back before I got my implant. It wasn't bad and I was able to learn to ignore it.

Ten Seconds from Lawrence of Arabia
Posted 8/1/2018 4:40 PM (GMT 0)
Thank, gives me hope!
Posted 8/1/2018 4:51 PM (GMT 0)
I did injections once a week and 30 min VED everyday as prescribed by a penile therapist. All my effective injections lasted over 3 hours. I was one of the 30% that can not stand trimix. Sever pain. I went to bimix but it didn't do the job even in large doses. SO, I started using .2 units of my old trimix and 6 units of bimix. That did the job. NOT doctor recommended but it worked with tolerable pain. Large dose of bimix caused pyronies with 15 degree bend. URO assured me there were no nerves left so went on to implant.
Posted 8/2/2018 1:49 AM (GMT 0)
rpilot,
Tomorrow, August 2, I will be exactly 21 month post RP with bilateral nerve sparing according to my surgeon.
I tried less invasive (Cialis and Viagra), VED and I am on my 4th pump which is Pos T Vac and never was able to achieve erections with VED usable for penetration even with constricting rings which are btw, extremely painful and my penis becomes blue and cold. Cialis and viagra even at max doses never produced anything, maybe they gave just a relaxed look to my penis.
Since PDE5i never worked for me, it tells me either I do not have erectile nerves or they were badly damaged and non recoverable.
I used TRIMIX wich produced pathetic erecions but was very painful and my penis was aching 24 hrs post injecting. Switched to BIMIX which is tolerable but does not produce erection sufficient for penetration even at 45 units or 0.45 ml.
Two weeks ago, met with implant surgeon and after detailed discussion, I decided to proceed with penile implant. He told me that I am one of his 2 patients with the most atrophy he saw in his long career.
Waiting for insurance approval which I fear it will be denied.
Radical prostatectomy was the biggest mistake in my 53 years.
MK
Posted 8/7/2018 3:10 PM (GMT 0)
Folks, I guess we can be thankful we are not dead, but my cancer wasn't outside of the organ and I should had not had nerves taken. I had a friend had his prostate removed a month ago and now is having sex by using Sildenafil. I believe I chose the wrong surgeon? Their has to be a better method for this surgery? I'm still working a a injection dose that will work for me.
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