Erection/Continence after open surgery

User

Posted 10 Nov 2015 at 19:52

Guys

I was just wondering what the success rate/timescale was for the return of continence from open surgery and also how some guys are coping with erection problems after open surgery with no nerve sparing. I have been told that the cancer has broken through the capsule so there is no chance of nerve sparing. The surgery date is set for 7th Dec.

I have discussed these problems with 2 urologist specialists with one saying that any future erections may never come back but this could be overcome with the help via pills, pump or injections. the other specialist told me that he didn't think that pills or pumps would be any good to me and that the only thing would be an injection, I just don't fancy injecting my wee friend with a needle.

I know that everyone is different and we each recover at various speeds but I would be interested to find out how others have coped with the after effects of open surgery.

My wife has been very supportive of me and has said that as long as I am alive that is all that matters. But I believe that sex is still a very important aspect of our marriage. I know there are other ways to enjoy sex but with the lack of penetrative sex I feel that this would could put a wee bit of a dampening on things.

Would appreciate any thoughts from fellow sufferers.

Sandy

User

Posted 11 Nov 2015 at 07:52

Hi Sandy
I think Lyn has said it perfectly to be honest. Even for men with double nerve sparing like myself , sexually recovery is normally immensely slow if ever. I am a mere 5 months post op with no normal function at all. Surprisingly my Urologist told me the pills wouldn't work for me either ( maybe he didn't nerve spare !! ). I use my pump everyday to attain a full erection for a few minutes. We can achieve penetration no probs at all when we want to. Bit of a passion killer and reduced sensitivity and weak at the base , but it gets the job done. Some people seem to have no end of trouble with the pump for various reasons. I've tried Caverject twice on my own and have attained erection but not good enough for sex. Not got it quite right yet but hopeful.
Despite us being a very close couple yes it has put quite a dampener on things , and it is difficult to adjust to , but it's a work in progress I guess.
All the best for your surgery
Chris

User

Posted 11 Nov 2015 at 00:16

Hi, it isn't the recovery from open surgery that is significant to you - it is the fact thst you are not having nerve-sparing. You would do better to be asking for comments from other men that have had non nerve sparing.

With the occasional (miraculous) exception, viagra and cialis will not work for a man with all his nerves removed. The pump does work for men with no nerves, and even if you do not in the end get to grips with using the pump for intercourse (some do, some don't) it will be essential to have a pump to encourage good penile health. Caverject (injections) and Muse (pellets or cream) do not rely on having nerves so will be your best chance of penetrative sex in the future although it is important to understand that even these don't work for everyone.

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

User

Posted 11 Nov 2015 at 09:45

Hi Sandy,

I have achieved a few erections since diagnosis, but none recently as I have been on HT.

However something that is rarely mentioned in these posts is that even when you do manage an errection without a fully functioning healthy prostate gland sex is never quite the same again.

The thing is that you do not climax, or rather that the climax you get isn't a proper one.

Before PCa the whole part of sex, or at least a big part of sex, was trying to control when you climaxed, not coming too soon being the be all and end all of good sex?

You may find that with a viagra fuled errection you can stay hard for as long, indeed longer than you or your partner wants, and you are then in a bizzare place where you are endlessly pumping away, not really knowing whether you have climaxed or are about to, or are even going to.

So my advice to you is to make the most of the next 3 weeks, and accept that whatever you are blessed with afterwards will never be quite the same.

Dave

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User

Posted 11 Nov 2015 at 00:16

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

User

Posted 11 Nov 2015 at 07:52

User

Posted 11 Nov 2015 at 08:45

Thanks Lyn/Chris

Going to a maggies cancer centre for meeting to discuss with other guys who have been through this.

It's just the l different opinions from one surgeon to another with regards ED post surgery.

I didn't think that pills would have made any difference either with no nerve sparing.

Sandy

User

Posted 11 Nov 2015 at 09:45

Hi Sandy,

I have achieved a few erections since diagnosis, but none recently as I have been on HT.

However something that is rarely mentioned in these posts is that even when you do manage an errection without a fully functioning healthy prostate gland sex is never quite the same again.

The thing is that you do not climax, or rather that the climax you get isn't a proper one.

Before PCa the whole part of sex, or at least a big part of sex, was trying to control when you climaxed, not coming too soon being the be all and end all of good sex?

So my advice to you is to make the most of the next 3 weeks, and accept that whatever you are blessed with afterwards will never be quite the same.

Dave

User

Posted 11 Nov 2015 at 14:52

Hi Dave

On the bones it is then for the next 3 weeks.

Need to get fitter pre op anyway.

😊

Sandy

User

Posted 11 Nov 2015 at 16:21

I describe my self as " supposedly " non nerve sparing because my operation was described as "non nerve sparing" but my surgeon thinks that some nerves may have survived which he thinks explains the tumescence. Even without any medication I get semi erections, with daily 100 mg Sildenafil I was getting 50 to 70 percent erections. I have tried Muse on four occasions with 100 percent success on two occasions and two not so good but I think we were nor concentrating.

If you google something like " non nerve sparing ED" you will find various studies on ED after sparing and non nerve sparing surgery (NNS). A very small percentage of NNS men report getting erections either spontaneously or with the use of oral medication only.

L's statement about not getting erections without nerves does make sense and the logical conclusion may be that despite the surgery being described as non nerve sparing, nerves may have survived.

Thanks Chris

User

Posted 11 Nov 2015 at 19:28

Hi Sandy,

It is not necessarily all doom and gloom as is being suggested here. Lyn is spot on with her comments, so no adjustment need there.

But, if you are fortunate to have nerve sparing surgery, both bundles on either side saved, or even one side saved, you may recover and achieve useable erections and orgasms in time? But, and this is a big "BUT", this is all individual to every man.

It is true for me and probably many others that orgasms are "different" to what they were? The most noticeable difference is that they are dry. This can be a bit of a bonus for some, especially the lady. Some women do not like the threat of fluid, and there is no damp patch, no need for her to go and clean up afterwards. It is not all bad, not in my experience anyway.

So, to the issue of whether you will notice, if and or when you orgasm, if you do? For many, and for me, the orgasm process, the feeling and experience is pretty much as it was prior to my surgery. The build up, I know when it is coming and if it is achievable. I also know when to stop if it is not on the cards, and in any case my legs or knees will give up if it is not going to happen. ;-)

When it happens, it is good. I know it, my partner knows it, the throbbing and pulsating is still there. Granted not as it was before, but I am getting on a bit now.

What ever you recover, and you may recover a lot, a bit, or not a lot, you will learn to appreciate and just be grateful and happy that you are alive to either bemoan the fact that you ain't recovered a lot or celebrate the fact that you did make a good recovery.

I wish you well, but if I were you I would be "at it" 24/7 in the meantime. If my knees and legs could stand it!

atb

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 28 Nov 2015 at 14:47

HI all

I am almost 4 months since my robotic surgery & no erections yet but early days still. I am able to have orgasm though & with the aid of the pump supplied by my hospital i can get an erection which is virtually the same as pre op.

Continence was shocking initially but it is getting better by the week. Keep doing the exercises & follow the guidelines on what you can & cannot drink/eat.

As i have seen on this site many times, at least i do not have cancer now!!

User

Posted 06 Dec 2015 at 20:41

Best of luck for your surgery tomorrow.

Just remember, there is no normal, only normal for you. If you're tired, rest. If you need support, ask. And keep talking to your significant other.

Louise x

User

Posted 06 Dec 2015 at 21:57

Hope all goes to plan and take it easy over the next few weeks, but not too easy. Keeping active is supposed to keep the motions moving. Number one tip no straining to pass that first motion.

All the best.

Thanks Chris

User

Posted 06 Dec 2015 at 22:00

Good luck tomorrow Sandy. Good thing is your getting rid of the cancer mate.

User

Posted 07 Dec 2015 at 09:18

Hope today's operation goes ahead and is successful for you Sandy.

Good luck and Best Wishes

We can't control the winds - but we can adjust our sails

User

Posted 16 Feb 2016 at 19:37

Hi all,

Not posted for a few days now so just awe update.

Just been for post op assessment. Consultant stated that the level of cancer was extensive with 80% of prostate cancerous, 7 lymph nodes cancerous, seminal vesicles also fully cancerous. basically everything removed down below including nerves.

Post op has shown negative margins in the bottom region but unfortunately it has shown up as being positive margin at the bladder. So RT is now being arranged for a couple of months time.

I am dry in both day and night time, not wore pads for a couple of weeks now, which my consultant was amazed about, and I feel pretty lucky that I had a good surgeon. My only concern now is that incontinence returns but I should be thankful that the cancer has been drastically reduced through removal of prostate etc.

Happy that I went for the RP open surgery as I do not believe that HT/RT would have did the same job of removing so much cells.

Not out of the woods yet but feeling very hopeful of RT success plus getting back to work next week.

Sandy.

User

Posted 16 Feb 2016 at 20:41

Sandy,

That is a positive outlook and hopefully will see you through whatever comes.

When I had my op I told my surgeon, that my priorities were:

1. life, at any and all cost, give me life.

2. I would prefer not to be dee fee kay ting myself uncontrollably. The censor bots will bot allow "gnittihs"? But hey if I am alive to moan about this? Result!

3. I would rather not be gnissip uncontrollably. But hey if I am alive to moan about this? Result!

4. If I saw him again and he was apologising for the fact that I was dying because he had left some bits in to stop either 1, 2, or 3 I would be SERIOUSLY unimpressed, and would not thank him. No result at all.

I wish you well sandy.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 16 Feb 2016 at 23:39

Hi Sandy,

I have just been through a bout of post radiation cystitis, which you may be prone to if they are going to radiate close on to the bladder. You can read all about it on the PCUK website.

I am finding that Tamsulosin is a great help and the cystitis seems to have come and gone in only a few months.

So hopefully it won't have any lasting consequence, but it may be worth reading up, so you are prepared, as they say hope for the best but plan for the worst?

Dave

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