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Facing prostate surgery soon, worried!

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User

Posted 10 Aug 2022 at 03:59

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:

1)How do erections feel when achieved via the injection route as opposed to natural ones? more or less the same? Do you need to feel some arousal for the erection to happen after the injection? I've read of 2 types of injections.

2) What do you do with sexual urges if an natural erection is not possible? Every time I feel the urge I need to take an injection or use the pump? Are there creams that cause erections or other simpler methods that I could use to release the urge?

3) I've read that your penis becomes smaller once the prostate is gone however I know of a simple and safe surgery that can enhance your penis length permanently and I wanted to ask if others have done/thought of this. What the surgery does is basically to reveal the part of the penis that is hidden inside the body.

User

Posted 13 Sep 2022 at 16:17

Jimmy, yes get and use a pump for rehabilitation and self pleasure. Simple masturbation will also help. Yes having a partner probably does make recovery easier.

My reply to you a bit further up this post covers some of your concerns.There are guys on here who have had failed relationships and gone on to have sexual activity with there new found partners.

Never give up.

Thanks Chris

User

Posted 13 Sep 2022 at 14:56

JimmyChoo, I would recommend the adage "never say never." Nobody fully understands the myriad pathways your recovery might take. If your worst case emerges and you never get a natural erection again, I personally would advocate the use of the pump for two purposes (a) all kinds of sexual pleasure, both alone and with a partner and (b) to keep the spark alive - as you allude to, there is no need for those sexual urges to stop. Mine certainly haven't even though my erections are few and far between. And while I am lucky to have a supportive partner, we have both adapted to new ways of being sexual together. And I still get upset and confused when I am aroused and limp, or fade away at the critical moment, two and half years after treatment.

Is it frightening, frustrating and emotionally challenging? You bet it is. As a man, probably the biggest combined physical/emotional challenge I have experienced in my 64 years on this earth. Looking back, I have learned a lot about coping with things not going the way I want them to go, and still choosing to enjoy my life including my sexuality.

About being single and dating, here's a great resource from a wonderful single man who says his partners actually really like being able to "dial up" the hardness and size of his erections using the pump. And he is not alone in reporting this - just that he has taken the time to write extensively about what it is like getting over those edges you anticipate, like telling a potential new partner about your non-standard-issue male body. Visit this blog for honest, practical stories of prostate cancer and the single man https://edysfn1.wixsite.com/prostateadventures

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User

Posted 11 Aug 2022 at 15:31

In addition to what I just posted my urologist yesterday told me that injections are unlikely to work sufficiently if you had no nerves spared. Is this the case?

User

Posted 11 Aug 2022 at 17:51

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.

User

Posted 11 Aug 2022 at 21:39

Thanks for your input Andy.

My urologist yesterday told me that there is no need for daily pump usage unless your nerves have been spared. I am really not sure what to think of his advice and I spent £250 to see him privately. I am not impressed!

After my operation the prostate will be removed (non nerve sparing) along with the urethra, rectum and bladder. Basically there will be nothing left in that area. My erectile function is more or less normal now but it won't be anymore if I have this surgery.

Could you point me to some webpage that explains how penile implants work? Do you get a natural feeling of an erection with them? Is the implant completely hidden? How do you pump the implant up? Is it really worth it having the procedure in terms of what you get back afterwards?

I already have completely dry ejaculations due to a previous surgery near by even though my prostate is in tact so am aware of the increased difficulty in getting a good orgasm without any semen coming out but this is something that I can live with and provided I go about it the right away I can still get very strong orgasms, it just needs a bit more work/adjustments than before.

I am very concerned about being impotent at my age and as am single and very much alone I worry a lot about what this will mean for my dating life and finding someone suitable who would want to be with me. I already struggle in that department. What my urologist told me seems to be questionable and contradicts a lot of what I read here perhaps because I don't have just my prostate removed?. I am not sure.

I have read that after having your prostate removed your penis can shrink in size a bit and as am already average in size ( just over 5 inches) I worry that this will further affect my confidence, let alone having to wear a belt to hide the colostomy and urostomy that will accompany me. The procedure is something about bringing out the penis that is hidden inside your body by cutting and reconnecting some muscles that hold it or something like that and I have read that it is a quite simple and safe procedure which results in a bigger looking penis though am unsure if during the erect state it will actually be bigger. I think it only makes you look bigger when flaccid but need to double check on this.

As you can appreciate I have got a lot of issues going on. I am looking to find out how "impotent" am going to be after this surgery. I do not like the idea of pumps at all nor of sticking stuff inside my urethra. Injections or surgery seem to be the viable options. I am also very concerned about how am going to handle my sexual urges as they will not stop after surgery.

Edited by member 11 Aug 2022 at 21:41 | Reason: Not specified

User

Posted 11 Aug 2022 at 22:55

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.

User

Posted 11 Aug 2022 at 23:38

It seems your consultant doesn't know very much about ED treatments - I think you need to ask for a referral to a specialist ED nurse or andrology clinic although this may not happen until after the operation. As stated above, injections do not need the nerve bundles.

Re your second question, it is perfectly possible to masturbate and orgasm without an erection - you just need practice and a lot of lube!

Surgery to make the penis look longer is a bit of a red herring at the moment - more important to focus on the surgery and then recovering some kind of erections before you start worrying about size.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 12 Aug 2022 at 00:12

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.

User

Posted 12 Aug 2022 at 01:51

Thanks for that info Andy62. I will be having a urostomy. I have asked one person who has had this operation and he tells me that his penis is shorter though not by much after total pelvic exenteration so am not sure what's causing the shortening.

It is good to hear injections should still work. This gives me some relief. My only concern would be the length of the needle and how comfortable I will feel with that.

@LynEyre

Yes, I don't think my consultant knows much about ED treatments. I do agree that penile length shouldn't be a priority at this point.

Could someone with a penis implant kindly post here or send me a private message as I would really like to discuss this option.

Do erections feel more or less normal? what about orgasm?

User

Posted 14 Aug 2022 at 00:08

And this is what my urologist had to say in his letter, I copy paste: "Discussed erectile dysfunction and that we would recommend vacuum pump daily use if nerve sparing though in his case unlikely to be able to spare his pudendal nerves for erections as running very close to prostate and so pump would not be necessary in this situation and would recommend use of pump for creating artificial erection versus penile injections versus penile artificial implant;"

Thoughts?

User

Posted 14 Aug 2022 at 00:31

Jimmy,

How you recover will depend on your own individual circumstances. I was supposedly non nerve sparring but did get some stirrings shortly after surgery, my surgeon said there are a network of nerves and it is possible some nerves remained or found a different route.

Perhaps because there must be some nerve involvement, I can sometimes achieve a sixty percent swelling with plenty of stimulation and no chemical help. The oral medication do not seem to help despite trying a couple of alternatives, I probably should try more types. The erection with injection feels good , perhaps because seeing your manhood has returned has a feel good factor to it. With injections I find that stimulation helps improve my swelling and once the swelling subsides stimulation will restore the swelling. For me injections were more successful than muse pellets. Note I refer to swelling not erections

I do get urges and get that pleasant feeling in the penis and testicles but the lack of erection means the sensation just comes and goes. Sexual activity with my wife needs to be planned. Unfortunately the days of a quicky have gone. We mastered the flaccid insertion technique where you don't need an erection to have mutually enjoyable intercourse. We have to keep the windows shut and that is because of my noises. I find orgasms just as easy to achieve as pre surgery and they are far more intense and enjoyable than before surgery.

My penis does not appear to be significantly shorter when pumped up with the pump and I think my flaccid penis is slightly larger than before surgery. I have not had this confirmed but I am sure my surgeon said he lowered the bladder slightly to prevent pulling on the urethra. Due to other issues my use of the pump for me was restricted for a while. Once obtained the pump is a no cost option to keep the penis healthy.

Some of us have followed with interest a member who has recently had a penis implant, I admire his bravery, I took along time to inject my penis.

Never give up trying to get your sexual activity back on track and have fun finding a solution to the issue.

I wrote the above before you posted about the extent of your situation so some may not be relevant.

Another post today prompted me to search the web and I came across this video, it is a few years old but may give an insight into treatments.

https://youtu.be/4ELsojPFNV8

Thanks Chris

Edited by member 14 Aug 2022 at 00:41 | Reason: Not specified

User

Posted 14 Aug 2022 at 10:36

Originally Posted by: Online Community Member

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Aug 2022 at 00:28

Colwickchris,

Many thanks for your thoughts and detailed post. Hearing that erections with injections are more or less normal is a relief and it means sex will be a possibility without using devices. I am guessing erections with the injections feel quite a bit more natural than with a pump?

LynEyre,

It may not be obvious in the letter but he was clear that injections are unlikely to help if you have no nerves left and that use of the pump isn't needed if there are no nerves left behind. I specifically asked if there is a need to use the pump post surgery for rehabilitation. I really don't know what to think but i'll be seeing a different urologist in the coming month and i'll ask again. As already stated I do feel some relief that injections will probably work for me so at least with my dating life I won't have to say to any potential long term partner that "I can't sex without a device". Also my surgeon told me that he will try leave all/some of the prostate behind so I might have nerves too left.

User

Posted 17 Aug 2022 at 09:25

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

User

Posted 18 Aug 2022 at 02:20

Originally Posted by: Online Community Member

Thanks Chris

Yeap, I am getting wiped out here. My surgeon told he may be able to salvage something but I won't know for sure till surgery date and given how slow NHS is I don't have high hopes. Two to three months waiting time while the tumor inside me is growing, go figure.

I would imagine if I have my entire prostate removed I wouldn't be too different with someone who had radical prostatectomy. Do you know by any chance if there are injection with very small needles? I have seen some scary long ones.

User

Posted 18 Aug 2022 at 07:01

Hi Jimmy

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

User

Posted 18 Aug 2022 at 18:33

Originally Posted by: Online Community Member

Hi Jimmy

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

Hey Bill,

Thanks for that info. Is it safe to be using injections for a life time? Also do you happen to have a photo of the needle you are talking about? The one I have seen online in a video was definitely not small.

User

Posted 18 Aug 2022 at 19:24

https://images.app.goo.gl/w2q1moyz28FZUq8i6

Copy link into your browser. We can't upload photos.

I don't know how to make it a live link. Anyone know?

Cheers

Bill

User

Posted 18 Aug 2022 at 19:55

Bill, I sometimes find I have to go back in and put a carriage return after the address.

As an alternative on an Android phone just hold you finger on the link and it comes up with the option to open the page.

Jimmy

The Caverject Dual Chamber needle is supposed to be 12.5 mm long and is a gauge 29 which equates to 0.33 mm thick. It is a lot less painful than a blood test. For me it is a mental thing sticking a needle in myself.

I did have to do self catheterization, which involves putting a tube down the eye of the penis, because that was a necessity I found that easy to do.

Thanks Chris

Edited by member 18 Aug 2022 at 21:50 | Reason: Clarity of product used

User

Posted 18 Aug 2022 at 19:58

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 19:59 | Reason: Not specified

User

Posted 19 Aug 2022 at 08:17

Originally Posted by: Online Community Member

I would imagine if I have my entire prostate removed I wouldn't be too different with someone who had radical prostatectomy.

I'm afraid I don't understand this comment at all. A radical prostatectomy IS "removal of the entire prostate". Nobody only has a portion of their prostate removed. Can you elaborate?

Thanks,

Chris

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