Penile implant

User

Posted 24 Dec 2019 at 12:07

Quick note to wish everyone a happy festive season and a happy New year.

Would also like to talk to someone who has had penile implants, if you don't mind chatting (I have so many questions/concerns) then would greatly appreciate if you can send me your contact number via private message please.

Regards

User

Posted 24 Dec 2019 at 16:19

Drayton

i have an appointment in March to discuss an implant. Your news is very encouraging. What questions do they ask to assess if you meet the eligibility criteria. My understanding is that there is a bit of a fight to get these implants.

And what questions do I need to ask the consultant?

Ulsterman

User

Posted 14 Dec 2020 at 21:04

Hello, I would like to hear from andrewc since he has had both a penile implant and a artificial sphincter implant. I had a radical prostatectomy in 2017, then a Artificial sphincter implant in 2018. Now due to ED and Peyronies I’m scheduled for a penile implant 12/16. I’d like to hear how Andrew is doing with both and if there is any discomfort having 2 implants in the sack.

User

Posted 14 Dec 2020 at 23:32

Andrew hasn't logged in since March 2019 - but you could try sending him a message.

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

User

Posted 14 Dec 2020 at 23:48

I’ve tried to but since I’m a new member the site blocks direct messaging until you’ve been messaging on the site for a while.

User

Posted 15 Dec 2020 at 00:04

Ah, okay.

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

User

Posted 12 Mar 2021 at 04:50

A Newbie so bare with me :)

I was told yesterday by my GP that she could arrange a referral for a Penile Implant. She gave me 3 choices and after talking to the wife and a bit of jolly old Google searching. We think the Inflatable, three piece implant, looks like the best option?

My question is: What are the pros and cons of these, does the pump part show (I lost a Testicle following the RP so that not a big issue)

Any comments would be great

Thanks

User

Posted 14 Jun 2021 at 19:21

Hi all

I’ve been reading with interest the information and reports on here regarding penile implants and it would be great to hear any updates from those that had the procedure some time ago.

I’m 10 months post non-nerve sparing prostatectomy and now seriously considering having implants to solve my ED situation.

Although the surgery is available on the NHS I’m not sure how long I’d have to wait before I could get it, due to the Covid caused delays.

If there is anyone with more information, it would be appreciated if you could post a reply or message me direct.

many thanks

Rich

User

Posted 28 Jun 2021 at 20:27

Hi to all of you thinking of having a implant I can only speak from my experience , like all of you nervous as it’s irreversible . But as nothing was working I had nothing to loose . I’ve had the three piece fitted a few years now and all has been fine , unless you feel for the pump you don’t know it’s their . And I’ve found the best way to use the pump to inflate is my middle finger and my palm I tried two fingers but it kept slipping out of them . It’s been a complete success for me and my wife . I’m sure their others who might not have been so fortunate , the discomfort is manageable with the help of pain relief in the first few days but it will be Bit tender for a few weeks . If I ever needed it replaced in the future I wouldn’t hesitate . I wish all of you the very best on your journey to getting back to a normal life Drayton 👍🏻👍🏻

User

Posted 29 Jun 2021 at 00:08

Thanks for the update Drayton. I’m about 11 months post surgery and finding no real success with the various other methods to combat ED. My consultant wants me to wait another few months and if still no success will put me forward for the implant surgery, which I think will be the answer for me although infection post surgery appears to be a real concern.

User

Posted 22 Nov 2021 at 10:00

Well I’ve been very lucky with my referral to UCLH regarding penile implants. Originally I was told I’d have to wait 4 months for surgery (from mid Aug 21) and my date came through a little later for 13th Jan 22, which tbh suited me, for various reasons. This has now been brought forward to the 6th which means isolation just after Christmas.

My wife is fully supportive and was able to attend my outpatient appointment , meeting my consultant and helping to choose which implant to have. There are basically 2 types that result in slightly different hardness levels when inflated. We’ve gone for the harder of the two….

Out of the various ED treatments we’ve tried, the only one that we’ve had some success with is the vacuum pump but of course it it feels quite numb when wearing the bands to maintain an erection and much sensation is lost. We’re really hoping that implants will rectify that and will feel much more normal.

Happy to share updates with anyone on here if interested.

User

Posted 25 Nov 2021 at 07:26

I'm still on the uclh waiting list. I had a hydrocele (swollen testicle) that they had to sort out first. That was done 2 weeks ago. Hopefully not too long now

User

Posted 25 Nov 2021 at 10:33

Sorry you’re having issues Ulsterman.

I read your bio and you certainly have been through the mill!

I consider myself very lucky. Had no symptoms and cancer was only found after I requested a routine PSA test as I hadn’t had one since I was 50, 11 years earlier. These tests really should be done annually!

Gleason was a 7. Had robotic prostatectomy August 2020. Consultant had prostate tested while I was under and as the cancer was on the outside of the prostate he opted to remove all nerves and lymph nodes. Ironically when the latter were tested they came back clear. Thankfully all PSA results have come back as undetectable. Still having bladder leakage, particularly when I’ve had a few glasses of vino!

Have a pre-op assessment on the 29th Dec at UCLH. Surgery scheduled for 6th Jan 🤞

User

Posted 01 Jan 2022 at 21:31

Now officially in ‘Covid’ isolation prior to my surgery. PCR test to be done on the 3rd Jan and surgery still scheduled for the morning of the 6th. Hoping the Covid situation with staff sickness etc wont affect my date 🤞.

I have to say I’m a little nervous about the operation itself. My prostatectomy was required and so I had no choice really but of course the implant procedure is very much elective. While no other ED treatments work very well, I am well aware that if this procedure doesn’t work it’s game over as far as future erections are concerned. Of course there’s no reason why it shouldn’t work although there could be complications but I’ll have to cross that bridge, if it happens, at the time.

Looking forward to reporting post operatively.

Edited by member 01 Jan 2022 at 21:32 | Reason: Not specified

User

Posted 02 Jan 2022 at 00:01

Wishing you all the best Rich. UCLH do over half the penile implants in the UK, so you should be in good hands.

User

Posted 02 Jan 2022 at 00:06

Cheers Andy. I have one of the top surgeons so should all be good 🤞

User

Posted 02 Jan 2022 at 01:55

Apparently I’m still too new to be able to send a private message 🤷🏼‍♂️

Thank you, I have the top man at UCLH too 👍

I’ll share my experience when it’s done.

Edited by member 02 Jan 2022 at 10:49 | Reason: Not specified

User

Posted 02 Jan 2022 at 10:42

Amend your post Rich - not allowed to name your medics

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

User

Posted 02 Jan 2022 at 11:26

Hi Lynn

wasn't aware of that so my post changed. I guess admin would have been in touch after the Bank Holiday.

I’ve just had a read of your experience, how awful that 3 men in your life have had to deal with this! Even being 11 years in you must still ‘hold your breath’ every few months waiting for the PSA results.

My robotic RP was 16 months ago. The lab did tests while I was still on the table and as cancerous cells were found on the outside layer of my prostate my surgeon decided to remove all nerves and lymph nodes. As he said after the Op’, the surgery was about getting rid of the cancer and not about preventing future ED.

Ironically, when the nerves and lymph nodes were examined they were found to be clear!

Since surgery, my PSA has remained ‘undetectable’ but as you’d expect, ED has been a major factor, hence my implant surgery, which is due this week.

I’m interested to know, if you don’t mind sharing, how John has faired in this regard. Even with nerve sparing I know there is normally some nerve damage and the subsequent RT etc can also have a detrimental effect. I noticed that 10 months after surgery you said that things were starting to ‘stir’, did that continue?

All the very best to you, John and dad and here’s to a great New Year.

Richard

User

Posted 02 Jan 2022 at 11:51

Here is my thread on ED:-
https://community.prostatecanceruk.org/posts/t9839-One-wife-s-story-of-ED

Good luck with the implant 🤞

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

User

Posted 06 Jan 2022 at 10:22

Update….. Implant surgery cancelled due to staff shortages. Re-arranged for the 20th. Watch this space.

User

Posted 22 Jan 2022 at 08:51

So my surgery date was cancelled again but reinstated a few days later. Went in to UCLH first thing and after the normal pre op paperwork was done got taken down about 8:45 am so no long wait.

Was under for about 2 hours, so longer than expected but I had mentioned that I still get a little leakage when I have pressure on my bladder so the surgeon opted to place the reservoir under the muscle on the right hand side of my lower abdomen.

Felt pretty groggy when I came round but no pain as such. The area around my penis was quite numb due to the local anaesthetic used during the procedure. As the day went on I felt more uncomfortable as the anaesthetic wore off. I had a catheter, drain and drip connected and a lot of bandaging.

The following morning the bandaging was removed and the implants deflated. They had been inflated to about 60%. The catheter was also removed which was not pleasant all and later the drain which was fine. I then had to drink lots of water over the next few hours and provide 3 good samples. I also had to have a simple scan after each sample was given to see how much urine was retained. Eventually allowed to leave about 4:30pm. There was no rush to get rid of me which was great. The staff were lovely and compassionate.

The drive home, courtesy of my wife, took about an hour but we had to stop en-route so I could go to the loo, having drunk so much water!

Going to the loo was quite awkward due to some swelling and of course the pain that was now kicking in.

First night at home wasn’t too bad, did get a reasonable amount of sleep but it was difficult to find a position that was comfortable. The pain is really quite unpleasant now and due to the swelling it’s difficult to get comfortable and I can understand why people wonder if they’ve done the right thing by having the operation. However reading previous reports I’m hoping that the pain and swelling will subside after a week or so.

Edited by member 22 Jan 2022 at 08:53 | Reason: Not specified

User

Posted 22 Jan 2022 at 12:57

Thanks for keeping us updated. I'm just waiting on my admission date

User

Posted 22 Jan 2022 at 15:22

Keep us informed Ulsterman

User

Posted 07 Feb 2022 at 15:19

Well over two weeks in now. Still sore and uncomfortable but not too much pain. In the main I’ve managed to deal with the pain using over the counter meds although I have used the codeine provided a few times.

Pretty much all of the swelling and bruising have gone now although some of the areas are still quite numb.

I think it was Drayton who reported that day 11 was pretty unpleasant and for me it was day 12?

Fortunately no issues with infection and my scars are healing well.

My penis is quite firm without pumping. Nothing like an erection but certainly not flaccid as before and I think this is just the result of having the stiffer of the Titan implants fitted.

What has surprised me is the weight of the pump! It really is quite heavy and puts pressure on my scrotum making the underneath of my scrotum really rather sore.

I’ve had no pumping instruction yet. This was booked for week four but has been delayed closer to week six. Obviously I’ve had a feel around the pump and at the moment I’m thinking ’how the hell am I going to be able to do this’ but I’m sure once I’ve been shown and with a bit of practice I will. Due to the soreness maybe week six will be better than four.

Had no contact from UCLH checking on my progress. I guess they assume I will contact them if I have issues.

Many, mainly American, online penile implant videos talk about pulling the pump down repeatedly after week two and even pumping it up and manipulating to prevent scar tissue etc but no such instructions have been given to me.

I’m still off work as I have to be 100% fit in order to return, which I’m expecting will be 4 weeks post surgery.

Stay tuned for updates. If anyone wants to DM me feel free.

Richard

User

Posted 08 Feb 2022 at 10:03

Thanks for the great updates Rich - I am off to see Professor Ralph today for a consultation about my options for penile implants. Almost coming up to 3 years since my surgery, tried everything, the only success I get is Invicorp but the continual injections has resulted in Peyronies disease. Hoping an implant is the way forward.

User

Posted 08 Feb 2022 at 10:34

Best of luck David, I’m hoping this is the way forward! It appears the main issue is the risk of infection. Ask what your surgeon’s infection rate is and how it compares to the 2-3% average.

regards

Richard J

User

Posted 04 Mar 2022 at 17:01

Update on implant!

At 5 weeks post implant surgery now and had follow up at UCLH a couple of days ago.

Nurse and Doc pleased with my progress, no sign of infection, which was my biggest concern. Practiced inflating & deflating. Did ok but definitely a knack to it. Found it painful when inflated as pressure is exerted on the underside of the gland. Still sore now and particularly when inflated so at the moment not inflating fully.

At the moment I have to wait to have intercourse until week 6. Its clearly going to take some time to get used to the implant and get the best out of it.

User

Posted 04 Mar 2022 at 17:23

Well done and good luck for the next big step ... tryng it out where you plan to use it 😀

User

Posted 05 Mar 2022 at 14:37

👍

User

Posted 06 Apr 2022 at 18:29

Hi Andrew,

im in for my implant 13/4/22 after it being cancelled 3 times, did you come home with the implant partially inflated, and are you glad you had it done?

I had prostatectomy in feb 2020 and found a very painful experience.I hope your well

regards

chris

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