At last, my penile implant

User

Posted 07 Nov 2022 at 12:38

Originally Posted by: Online Community Member

5 month update

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My penis has lost some sensitivity.

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Thanks again for sharing with such brutal honesty! I am very glad it works well enough that you would do it again. On the question of penile sensitivity, I wanted to mention that I'm detecting a growing number of men who struggle with sensitivity over time, in my case Year 3 after radical prostatectomy.

I haven't had an implant but have some similar symptoms. Definitely get less exquisite pleasure when the glans part doesn't, as you said, "plump up" fully. And I don't fully understand why it is getting worse after 3 years. Maybe simply that I am getting older (only 64 and otherwise fit though) - or perhaps more likely that I am just not as easily aroused by the slightest sexual opportunity as I was when first recovering from RP and PCa.

User

Posted 08 Nov 2022 at 23:20

Hi,

I underwent a 3 piece implant around the same time, and will agree on the points that there are significant lifestyle changes that come with it.

You now have a completely lifeless appendage that does ‘show’ and have to think of containment, because it is uncomfortable and now un-natural for it to hang left or right (or upright). It does not shrink much from the pumped position. (Presumably it is not quite as bad as the malleable implant, which I discounted for that reason).
As the Americans say, be proud and show it!

It is otherwise undetectable unless with intimate touching, and my wife says no different during sex, so happy days.
I was also not advised on how it would all feel but guess the surgeons don’t ask their patients as I have not had any direct contact since the operation and hopefully do not expect any.
There are many different pumping techniques/ instructions on use online, (1 or 2 handed, 1 or 2 thumb etc etc). More than one possible way works for me each time.

My pleasure has waned over the passing years, so no significant impact there.

Pleated, rather than fitted/regular trousers now hang in the wardrobe, as do spandex running shorts combined with longer tops. Totally different ‘separating’ underwear and new swimwear often described as gay interest and meaning more room in front! No hiding this package on the beach!

There really was not enough post op education or information from the teams involved on reflection, but I had researched comprehensively and am more than happy with the result, but it does matter how strongly prepared you are mentally, and able to accept and adapt with the results. Hopefully through more than one revision.

Either way, it’s dramatic losing your prostate or having significant ED and I consider myself lucky to have had the uneventful operation free, after being told my trust did not fund such operations.

Mike

User

Posted 09 Jan 2023 at 00:48

Dear Ulsterman

I think you really took one for the team. Your story really outlines the devastating effect of this disease and its impact on a man's very existence. I long for some longevity but accept that whatever the outcome quality of life will never be the same again.

A brave story that provides education and acts as a beacon of hope like the lighthouse of Blackhead Antrim.

Gabriel

User

Posted 15 Jan 2023 at 20:15

HI I had a non nerve sparing RP three months ago, I had severe ED before, tried everything and was on the waiting list for a penile implant. I'm fairly continent but nothing happening at all concerning erections. Currently on Sildenfil every three days. Not sure when I'm likely to get the call but as with other posts I'm anxious about the possible results. The urologist said my penis will look like a marshmallow on a stick which doesn't actually sell it. Also, Ulsterman said he was told cycling was not recommended after the op, are there any things I should be aware of?

I'm interested to hear experiences, suggestions or advice.

User

Posted 15 Jan 2023 at 21:19

My doctors were most insistent about cycling. I'm not to do it. Horse riding is out, too, as are roller coasters. Basically, you have a mechanical device in your scrotum and anything that could damage it is not recommended. I used to do coasteering and enjoyed jumping off cliffs and waterfalls. I think that's probably out, too.

As for your penis looking like a marshmallow on a stick. An erect penis is better than one which doesn't get hard at all. My penis has changed its appearance. Being honest, I used to love my penis and was proud of it. Now, I've got something that works. That's all....it works. I couldnt say I'm proud of it anymore. This disease is brutal.

Have you tried invicorp injections?

User

Posted 15 Jan 2023 at 21:23

Gabriel, I know not this lighthouse of which you speak. Coming from the other side of Belfast Lough, I'm more familiar with the Donaghadee lighthouse, a painting of which hangs proudly in my hallway here in England. I think our English friends are going to have a hard time figuring out how to say Donaghadee lol.

User

Posted 15 Jan 2023 at 21:26

An update. The implant gives me very firm erections. However, I've got a floppy glans/head. Medication to improve that isn't great ..... alprostadil down the urethra. The pain is reminiscent of the injections. It looks like further surgery later this year to reposition the glans.

Would I do it again? To be honest, I think I would. It's an imperfect solution. But it is a solution.

User

Posted 15 Jan 2023 at 21:31

I thought 3mths post prostectomy was too soon to be thinking penile implants and looking to have an election?

User

Posted 15 Jan 2023 at 21:59

Good to know Ulsterman. I don't expect to have the implant anytime soon. Before the op I was 60-80% sure about having it but now I feel I've got nothing to lose. Think I would definitely choose the three part implant. Also pretty depressed at the moment due to feeling emasculated. Tried various amounts of Caverject a couple of years ago without success, looking at a bathmate to improve the blood circulation instead of the sildenfil.

User

Posted 15 Jan 2023 at 22:57

Originally Posted by: Online Community Member

I thought 3mths post prostectomy was too soon to be thinking penile implants and looking to have an election?

You are correct but JDHD said he had pre-existing severe ED, so that will explain why he is already on the waiting list.

User

Posted 15 Jan 2023 at 23:05

JDHD, I don't understand why you are using sildenafil. If you had non nerve sparing surgery, this will not work. (That's what my urologist told me.)

I urge you to try invicorp injections whilst you are waiting for your implant surgery if you haven't already used them. Many men have found invicorp worked for them when everything else had failed. Make sure you're injecting technique is correct.

I don't know where you live, but all of my reading about the implant said to make sure you use a surgeon who really knows what they are doing. I had mine done at UCLH which is one of the biggest providers of this surgery.

I got the AMS 700. I think this is pretty standard.

User

Posted 16 Jan 2023 at 06:27

Hi Ulsterman, I haven't heard of Invicorp but like I said I have used caverject. I will ask about though. I'm in SW England. Apparently the Sildenfil is just to keep the blood circulation going and the penis able to become erect in the future, it's not to create an erection. I had an ultrasound and it showed a venus leak.

User

Posted 16 Jan 2023 at 07:48

Invicorp is similar to caverject but made with different chemicals. Many men have found success with it.

User

Posted 19 Jan 2023 at 17:16

Have decided to stop the Sildenfil, don't like the side effects. Going to try a Bathmate and see how that goes, Anyone tried it? Still a bit concerned about having an implant and reading some experiences on here make me hesitant. Nearly all the internet clips on Youtube show Americans giving a very positive spin on having a prosthesis.

User

Posted 19 Jan 2023 at 20:47

Never heard of a bathmate.

User

Posted 19 Jan 2023 at 21:01

It's basically a pump filled with water instead of air. Will ask about Invicorp.

User

Posted 21 Jan 2023 at 11:08

I'm told one of the Bathmate models is approved for supply on NHS prescription, but I've never come across anyone who got it that way. Also heard the SomaErect Response II accounts of 80% of NHS prescriptions (possibly because the iMedicare who supply it seem to run most of the pump clinics), and I suspect the Esteem Erectaid probably accounts for most of the remaining 20%.

User

Posted 21 Jan 2023 at 13:03

In our area, the Erecaid Esteem seems to be the default. On the forum a few years ago, the Farnhurst Elite was the most commonly prescribed. It is still on the NHS approved list although you hardly hear mention of it on the forum now. John had the Esteem but used Farnhurst rings with it as they seemed more effective.

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

User

Posted 21 Jan 2023 at 14:36

I had real problems with the rings with the Soma, just couldn't seem to get the right size rings and getting them off was a real pain. I asked the urologist nurse about a pump but no reply, so have gone ahead and purchased the Bathmate as I want to get off the Sildenafil.

User

Posted 21 Jan 2023 at 14:51

Did you attend a pump clinic? The main rings used are the Surefit semi-transluscent silicone rings. They come in 3 sizes, X, Y, Z, with a Y being supplied with the pump and a pack of one of each usually also prescribed separately. You may need to use 2 rings (they'll tell you while they're demoing it on you). They should have shown you how to take the rings off, but in particular, you don't try to drag them off an erect penis which would likely do you some harm. It can be difficult to grip the tabs if there's lube on them, which there usually is by then.

User

Posted 21 Jan 2023 at 17:39

It was about 5 years ago and no I wasn't offered a pump clinic, just handed it. Several of the rings just snapped and when I did manage to get a ring to stay on and ready for action it would gradually leak. However like I said before, I had an ultrasound last year before diagnosis and was found to have a venous leak.

User

Posted 12 Feb 2023 at 02:39

Do you also get floppy glans with invicorp?

User

Posted 12 Feb 2023 at 23:13

Sometimes yes, sometimes no

User

Posted 15 Feb 2023 at 19:42

Will Invicorp work if if you've had a non nerve sparing RALP?

User

Posted 15 Feb 2023 at 22:21

Invicorp / caverject will work without nerves - but it isn't guaranteed to work for everyone. Even for men with full nerve-sparing, there is a small but significant proportion for whom the injections don't work.

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

User

Posted 03 Mar 2023 at 18:39

Hi Andy, thanks to your suggestion I decided to retry the Soma pump and have recently received an advice session from the Soma rep which has really helped. Several years ago I was handed a Soma pump by a urologist without any suggestions on how to use it. Consequently, I didn't put the rings in hot water to stretch them nor shave my groin, or remove the rings by pushing my fingers under the ring. Due to this several of the rings just snapped, the ones I used were too large to keep the erection and removal of the rings was painful, so I gave up. The advice I received was spot on and I can now maintain an erection using the medium tension rings for the first time in five years. Thanks again.

User

Posted 09 Mar 2023 at 21:36

Bright red blood in my urine. GP suspects the implant is responsible. The hospital will do a mri scan of the penis to check the implant and a flexible cystoscopy and a ct low dose kub....I think they're checking for bladder and renal cancer.

User

Posted 09 Mar 2023 at 22:51

Sorry to hear this. I'm sure it was quite a shock.

It could well be a late onset side effect from the radiotherapy. Radiotherapy can cause lots of fine surface blood vessels to form in bladder or rectum which are fragile and liable to break. If so, this is relatively harmless unless the extent of it might be causing anemia or a clot forms which blocks the urethra. They do always have to confirm it's not bladder or kidney cancer though.

User

Posted 09 Mar 2023 at 23:02

UlsterMan, hope it turns out to be nothing too serious, I was passing lots of clots etc but that was only a few months after SRT. Have you been overdoing things.

Thanks Chris

User

Posted 10 Mar 2023 at 11:01

Ulsterman, Sorry to hear this, I pray it is nothing serious.

User

Posted 10 Mar 2023 at 18:05

Sorry to hear this Ulsterman, hope it turns out to be nothing serious.

User

Posted 10 Mar 2023 at 21:43

Ulsterman,

As others have said, I too hope that it's not serious, but I can only imagine that this is difficult for you. Take good care of yourself.

JedSee.

User

Posted 11 Mar 2023 at 18:19

Thank you, everyone. I'll keep you posted. I still think the implant is somehow responsible.

User

Posted 11 Mar 2023 at 19:27

Sorry I missed this Ulsterman - fingers crossed it is not a serious problem

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

User

Posted 12 Mar 2023 at 13:10

Fingers crossed for you.

User

Posted 12 Mar 2023 at 22:08

Sorry to read this. Hope you get it resolved.

Ido4

User

Posted 14 Mar 2023 at 07:40

I have my low dose kub ct scan today. My daughter has just qualified as a doctor and was able to tell me that kub is kidneys, urethra and bladder. I didn't know that.

I still blame the implant.

User

Posted 14 Mar 2023 at 09:43

Hope all goes ok with your Kub Ct scan today Ulsterman. Thinking of you and hope your results are not too serious.

Ange x

User

Posted 01 Apr 2023 at 16:19

All my scans have been done. No explanation as to why I peed blood but nothing wrong with the implant and no kidney or bladder cancer. Good news. They said most likely a one off experience

User

Posted 01 Apr 2023 at 16:55

👍

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

User

Posted 01 Apr 2023 at 18:37

Ulsterman,

That's great news. Glad for you.

Good luck.

JedSee.

User

Posted 02 Apr 2023 at 05:44

Great news. Glad everything was clear for you 👍

User

Posted 02 Apr 2023 at 09:22

Good news Ulsterman.

Ido4

User

Posted 02 Apr 2023 at 10:41

What you've gone through with this procedure sounds absolutely ghastly, Ulsterman. It's been a real eye-opener to follow your journey, and I admire you enormously for sticking with it. Can the implant be removed if it just doesn't work out for someone?

Best wishes,

Chris

User

Posted 02 Apr 2023 at 12:06

I had one random episode of blood in urine 3 years post RT. I had it investigated, nothing found, not happened since.

Dave

User

Posted 02 Apr 2023 at 15:43

I'm not 100% sure the implant can be removed. It's an expensive and specialist procedure to start with. If you did have it removed, I don't think injections could be used to give you erections. But I'm not sure. I was told it's pretty much irreversible.

To be fair, the MRI of the implant showed it is fitted properly. It may not have been the cause of the bleeding.

I wouldn't let any of my experiences put any man off having the implant. It is an imperfect solution but does the job

User

Posted 26 Aug 2023 at 10:35

Some of you have asked for an update now that the implant has been in use for a year.

My penis is shorter and less girthy than before surgery and salvage radiotherapy. That's obviously not the implant's fault. The penis itself though looks natural. You wouldn't know by looking at it that there is an implant inside it. Touching it, it is obvious but not off-putting. I really don't like the pump part that sits between my testicles. It is bulky and heavy. You use it to inflate and deflate the device.

I think the design of the pump part of the device could be improved. Maybe not. I wonder if eventually a smaller, less obtrusive pump could be designed.

An app based device could be interesting. You may not need a pump if the app could somehow release the fluid from the reservoir.

My orgasms are a bit harder to achieve than with the Invicorp injections but that's not a huge problem.

Orgasms are not as sensitive. With Invicorp, I had excellent dry orgasms. With the pump, most orgasms are good, some are excellent. Maybe it's an age thing, but I am only 53.

Imagine this. If I had been able to get as many Invicorp injections on prescription as I wanted, and if I could have injected myself as often as I wanted and if the injection lasted more than 45 minutes (with many men it lasts longer), then I think I'd prefer Invicorp to the implant.

The implant works well for me and I'm reconciled to it, not overjoyed with it. It's a pity that there isn't a man on here who has a much more positive view of the implant, as I wouldn't want my experience putting anyone off.

But if you want a guaranteed erection, the implant will do that for you.

User

Posted 26 Aug 2023 at 19:59

Thanks Ulsterman, for the update. I really appreciate it. And I'm glad that you've given a "warts and all" appraisal of the device. My experience of urology professionals gives me the impression that they tend to paint an overly- positive picture, so I'm glad you've told it "like it is".

You've given me lots of food for thought. I've not been having great success with injections (Alprostadil or Invicorp) so I wanted to find out more about an implant.

It's great that you get a guaranteed erection. But I'm worried about losing length and girth. I've already lost some length after the prostatectomy, so losing even more was not in my plan. And I don't like the idea that someone could feel that it's different when they touched my penis. Also, if someone was a little rough in handling your testicles, could that inadvertently cause problems with the device? (You mentioned elsewhere that you can't ride a bicycle, so presumably any irregular movement could cause problems?). Have you ever hurt yourself accidentally when operating it? I hope I'm not being too intrusive or personal.

Thanks for all the information you've given. As you've said, if someone else wants to chip in with a different experience of the implant, that would be great too.

Best wishes to you.

JedSee.

User

Posted 26 Aug 2023 at 22:25

The implant won't cause you to lose length or girth. Whilst waiting for the implant, you should use a vacuum device to help preserve length and girth.

I have been told to look after the implant but it is pretty robust. I've never hurt myself using it. And, if someone was a little rough during sex, you'd be OK.

User

Posted 27 Aug 2023 at 02:05

Thanks a lot for the comprehensive review. I have not had too much joy with injections, however I am slowly beginning to appreciate the pump and introduce that into our love making. The implant is a point of no-return it seems, therefore I will stick with the pump and the medication for now. Thanks.

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At last, my penile implant

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