Facing prostate surgery soon, worried!

Hello Jimmy, sorry to hear what you are facing.

I haven't tried erections with injections, so I'll leave others to say how they feel.

You don't need any arousal for injections to work - they don't rely on any nerve signals from the brain. Equally, they don't go away when you get bored - they go away when the drug eventually disperses away. You don't need any nerves for the injections to work - not sure what your urologist meant yesterday. You do need a good penile blood supply though, and this is a common reason men get erectile dysfunction as they get older. If your erectile function is good now, then that's not a problem for you at the moment. Is your surgery likely to interfere with this?

There is a cream (Vitaros) or a pellet (MUSE) you put up the urethra, but they don't work as well as the injections, so they don't work for all men.

There are two different drugs used in injections - some people find one is better than the other for them. There are different types of injection syringes too. You would go to an ED clinic or Andrology department, where they will go through the treatments.

Many men can orgasm without an erection, but it's more difficult. There are male vibrators which might help with this too. You can try a pump too, and you should use a pump regularly anyway, because you won't be getting natural nightly erections, and your penis does require regular erections to maintain health, particularly of the erectile tissue.

Another option particularly at your young age would be a penile implant, where the erectile parts of the penis are replaced with inflatable tubes/balloons, and you can create an erection whenever you like by pumping them up.

I suspect the procedure you are referring to to lengthen the penis is cutting the ligament which makes it point up. This would be an unusual case so if you were thinking of going this route, I would suggest talking with a very experienced penile surgeon to find if it's likely to make any difference in this case. Prostatectomy patients sometimes find regular use of the pump significantly recovers from penile reduction.

I asked today about using a pump if the nerves are not spared after my operation in a few weeks. I was told keeping blood flow to the penis was important for its on going health.

What will be your method of getting rid of urine after the procedure?

Penile shortening is thought to be caused by the loss of the prostatic urethra (the bit of urethra which goes through the prostate), and that the cut end coming from the penis has to be pulled in a bit to join the base of the bladder (which is also pulled down a bit). If your urethra isn't going to be reconnected to anything, or is going to be reconnected in a different way, penile shortening may not apply.

Like Lyn said, I'm not impressed with your urologist's knowledge of ED, unless there's some other factor we don't know about. One thought is if some of the blood supply to the penis is likely to be damaged, and that might prevent injections from working.

We have men here with penile implants so they can give you all the details. A small pump goes in the scrotum, like a 3rd ball, which you squeeze to pump it up. There is also another type which uses malleable plastic rods which are erect all the time, but can be bent out of the way when not needed.

Thoughts?

I have changed my view re your private consultant - what he is saying in the letter  makes more sense than it did in your original post. There are two purposes of a vacuum pump 

- daily use to keep the spongy tissue of your penis healthy and prevent atrophy until natural erections return; 

- use with a restriction ring for penetrative sex 

All he seems to be saying is that in your case, regular pumping is probably not going to help much with the return of natural erections but that post-op, you nay be able to get erections using the pump and / or injections or, if neither of those work, a penile implant. I don't think you can make a decision now - need to have the op and then try the pump and injections and see how you get on 

Jimmy, I used the rings that came with the pump for a while, they were quite tight and quite good at maintaining an erection but made the end of the penis cold and less sensitive. On the advice of CJ, I tried the durex pleasure rings, they do not hold the erection as well but the sensitivity is far greater.

I have just googled the surgery you are having, you are certainly facing challenging times and I wish you the very best for the future. I am not sure the normal consequences of prostate surgery will apply to you.

Thanks Chris 

The needles for Caverject or short and extremely fine. You barely feel it going in and the amount of fluid injected is so small you don't feel that either. The biggest hurdle is psychology.

Good luck

Cheers

Bill

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Cheers

Bill

Jimmy

I have just started using Caverject.   The needle is a 30 gauge (in my kit,  some may be different)  which is similar to the ones diabetics use for insulin injections.  The Caverject kit had a larger needle that is used to prepare the solution but you don't use this for the injection.   The injection itself is very manageable and I hate needles! 

As I understand it the main risks are from priapism and scarring.   To avoid priapism you need to get on the correct dose.   Scarring is uncommon with Caverject but you would need to monitor it for long term use.

There is a good book from Dr Mulhall called "Saving Your Sex Life A Guide for Men with Prostate Cancer" if you want to do a deep dive on the topic.   I found it useful to inform my conversations with my consultant and to understand the various treatments.

Best of luck. 

Edited by member 18 Aug 2022 at 18:59  | Reason: Not specified

Chris, I didn't understand the comment until I reread Jimmy's first paragraph again.

"I am in my late 30's and in the near future I might have my prostate removed as part of the total pelvic exenteration surgery (due to cancer in the pelvis) and am told no nerves will be spared. In light of that I have the following questions as I am quite worried:"

I don't think he has cancer in the prostate, and his surgeon doesn't know what he is to remove or leave until he gets in there.

Thanks Chris 

Regarding how natural it feels well that's a different story. The hinge effect isn't great and the "erection" won't get stronger as you get more excited so that can lead to frustration. But with practice it can work. Personally I found the intrusion (first time I tried my new girl friend nearly ran off screaming) a bit difficult but in an established loving relationship I can see it being a life saver.

Caverject worked best for me until I found the love of my life. Once I was in a stable loving relationship I found I no longer needed the heavy duty erection kit as enough natural ability remained. I realise not all prostate cancer treatment survivors are as lucky as me but there are many guys on here who one way or another are "getting it on" successfully...

One thing that is not quite clear to me though. Assuming no nerves can be saved is there still a point for daily use of the pump in the context that natural erections will never return?

Right now due to my age, and depending on my psychology, sexual urges do come often. I cannot imagine not being able to achieve an erection. Do I need to learn to ignore them? Doesn't that "frustrate" a male and creates a level of psychological tension/depression? I have already lost my ejaculation due to a previous surgery which takes some mental management in itself.

I am scared about the quality of my daily life given my life circumstances. I am not in a relationship and getting into one is going to be a tall order with all this. It would have been a lot different if I was already in one when all this started unfolding. I am now facing a potentially disastrous existence where I will survive cancer but evaporate from licking daily my unhealable wounds. How do you say to a girl you just met and you like "Hey, am a pretty good guy but I have two ostomy bags, I can't really have spontaneous sex without planning and "interventions". I also can't easily have children either unless they dig in to my testicles hoping to find viable sperm".  

Nightmares and a lot of emotional loneliness awaits.

I had 37 fractions off radiotherapy and on hormone therapy soon discovered my sex life was over  things are ok psa steady at 0.01 for nearly two years don't know if things will change when I soon come off hormone therapy if things will improve or not but I have got used to being without but don't hold much hope off things getting better good luck to anyone in the same situation 👍

After my latest appointment it has now become clearer to me that I will be having this surgery later this year.

I am very anxious of the very lonely life that awaits me post surgery. Finding a desirable/age suitable partner for someone in his late 30's will become a near impossibility unless I drop my standards a lot and begin to have no problem with dating someone 45+ along with not caring about their looks.

Before my health issues begun I had issues finding someone age appropriate because I had no desire for a family/kids and many girls of the age range I wanted had a big issue with this. I cannot imagine how difficult its going to be to find someone in the near future post surgery. I do not think I have the emotional stamina to go out and be rejected/ghosted a ton of times before I find someone. Find someone good looking? young? healthy? Unlikely..... To the advice that I recently received elsewhere "date someone within the cancer/stoma community as they are more likely to go along" the answer is no. I have my health problems/disabilities to worry about, I don't want to have to worry about my partners too. It is too much for me.

One question has arisen though. I see people using pumps when they are about to have sex and I don't understand why if injections work so well? You run to the bathroom, have your injection, and come out and all will look like normal. Why bother with a pump at all at that moment?

Lastly, I read that Caverject requires no stimulation to work but Invicorp does need sexual arousal. Are both statements true? I thought both of these drugs required no stimulation to work.

The way I have structured things in my mind is that if injections work then sex will be largely a non issue for me and my future partner and unusual/awkward moments of someone pulling out a pump will be avoided.  If this is true I can sort of relax knowing that having a colostomy and a urostomy is "on me" to look after and take care of plus I can also cover them with a special belt and they cannot be  noticed and cause grossed out feelings. Provided I manage my stomas disability and it only directly affects me and no one else then I should be OK on this front. If the penis doesn't work though then this is no longer "my problem" as it can also directly affect others.

I was under the impression that injections work for all. Do we have any statistics for how many people injections work? I will be even more devastated if even injections won't work for me. Disaster :(

Some conditions such as venous leaking mean that the blood doesn't stay in the penis and so injections are less effective.  There is also the risk of scarring from certain injections over time which can reduce their effectiveness.  Apparently this is less so with Caverject although many people get some level of pain with this.  If injections don't work or become too onerous there is the option to get an implant which some folks have got.  There is a good book on how to save your sex life after prostate cancer by Dr Mulhall which I found useful to explain the various options.

I had a prostatectomy at the end of April and have a pretty good sex life using Caverject.  It took a bit of persevering and dialling in the dose but it works pretty well.  Although have just gone on hormone therapy so will have to see how we get on with that. 

If atrophy is severe, the spongy tissue can't engorge even with a pump

So having recently had RALP I am starting to adjust to the new norm. Your question what do orgasm feel like? At first they were a bit weak but as I have started to heal they have become more intense. Can't say that they are the same as before but not at all bad. I have ED but with the wife's help get some stirrings. I use a pump, but only for training purposes, to keep the blood flow going. I really think you need to be open to lots of different sexual ideas with your partner.

Being randy or not shouldn't make any difference to whether the injection works but may affect how long the erection lasts.