Erection insanity - any experience out there? - Sex and relationships

User

Posted 27 Oct 2023 at 14:57

Hi guys - if anybody on earth has any experience of this I am sure they will be on this forum!!!

Background - I had RP in July...they unexpectedly found that the cancer had already moved out of the prostate so took out lots more gubbins than I was expecting (including nerves on both sides). Gleason 9 and positive surgical margins :-(

Anyway, once I got to the stage where I could think about sex again, as you would expect, the old man was not responding at all. Nothing. At. All. Limp, flaccid, not even a stirring or even a murmur. I vacuum pumped religiously every day then the doc prescribed Vitaros cream. OH and I tried it....it did the job and we did the deed!! But then afterwards the pain was utterly agonising, the old man hot, red and excruciating and the erection would not go away for two hours (ironic huh?). It was so unpleasant I can't even start to describe it.

I was due at the clinic on Wednesday next week for invicorp training but the amazing specialist nurse phoned today. Consultant says that having such as "extreme reaction" to the cream might mean there is some natural function left despite having no nerves so is suggesting a daily Sildenafil dose to see if that works.

Has anybody been there with no nerves and the Sildenafil actually worked enough to have sex again?

User

Posted 28 Oct 2023 at 00:02

Another Invicorp fan here. It's the only thing that works for me.

In fact it's that good, that when the wife sees me take a phial out of the fridge, just like sex pre op, she starts to feel one of her headaches coming on.😉

Edited by member 28 Oct 2023 at 00:06 | Reason: Not specified

User

Posted 29 Oct 2023 at 13:17

Originally Posted by: Online Community Member

The wife had to cut it off, not funny at the time but we laugh about it now

The ring, not the testicle .... 😬🤣

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

User

Posted 29 Oct 2023 at 14:40

The amount of experience and wisdom on here really is stunning. Thank you for all of it......I am trying to navigate this new world none of us wanted to be in....in March life felt kind of normal but then the biopsy results arrived and it all turned inside out. Now post-surgery I am involved on these kind of conversations!!

I am really glad you guys are out there!!!!!!!!

User

Posted 09 Nov 2023 at 12:44

Originally Posted by: Online Community Member

Like you I am definitely a grower rather than a shower.

It seems that are definitely 2 groups of us and maybe the ED treatment differs between the two. Likewise I am a grower - in fact by pulling on my scrotum skin I can make it completely disappear and typically at rest it's probably no more than 2-3cm. When fully erect it just over 5" - so a bit of a tiddler but it's worked for 45 years LOL
I have my consult at the beginning of January and will discuss to see what they can recommend (I'm NNS) but would like to try one of the injections. The VED works but the hinge effect can be what turns an amorous adventure into a comedy hour. At least we are taking it in our stride and working out what works and what does not :)

User

Posted 16 Nov 2023 at 18:00

Originally Posted by: Online Community Member

Trentender, the durex pleasure rings are not as tight, the don't hold the erection as well but I found they didn't make the penis cold and less sensitive.

I followed your recommendation a couple of years ago and it has served me well. Now I found something better for me - the Firmtech sling-ring which is much easier to put on because it kind of unhooks, and has one loop that goes under the balls, the other loop round the base of the penis. It is also soft and squishy like the Durex one, and for me it works a dream.

User

Posted 16 Nov 2023 at 22:06

😂😂😂

Many years ago, in between numerous pregnancies, I visited the contraception clinic to see about options. When I got home, I told John that they would give me free condoms but he would have to go to the clinic to be measured. He had never used a condom and completely believed me 😂 We had two more children after that.

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

User

Posted 25 Nov 2023 at 13:48

Well it must be my birthday or the new ring is working for both of us as I just sealed the deal two days in a row!

Definitely my favourite gadget now! I think the tightness issue may be a confidence thing so maybe I just need to forget about stuff!

User

Posted 27 Oct 2023 at 14:57

Hi guys - if anybody on earth has any experience of this I am sure they will be on this forum!!!

Has anybody been there with no nerves and the Sildenafil actually worked enough to have sex again?

User

Posted 29 Oct 2023 at 08:07

Gee_Baba, the muse comes in a small plastic applicator that you put down the eye of the penis,then you press a little button on the top to release the pellet/cream. All quiet painless, I found it was better to urinate before sexual activity and inserting the applicator, it meant the thin 25mm long tube had a bit of lubrication.

I found it wasn't as reliable as the injections,it has to be kept in the fridge and I have no idea about it's availability at the moment. Picture of applicator in link.

Thanks Chris

https://images.app.goo.gl/g1awKpZnu65owiaw6

Edited by member 29 Oct 2023 at 08:09 | Reason: Not specified

User

Posted 29 Oct 2023 at 14:36

Thanks mate - the Durex rings sound a safer bet but I will certainly avoid any testicle involvement!!!! Talking of tight testicles I am a bit nervous about the imminent Forest match!! 😬

The ring, not the testicle .... 😬🤣 I laughed so much the tears ran down my leg!!!!!!!!

User

Posted 08 Nov 2023 at 22:07

Originally Posted by: Online Community Member

non-nerve sparing (i think i've lost 25%) surgery

I think you need to clarify this tomorrow at your appointment - if you only lost 25% of the nerves, it wasn't non-nerve sparing RP - it was a partial nerve sparing RP. If you had non-nerve sparing, you would have had the whole lot removed.

Thanks Lyn - i may not have the terminology correct and yes, it's good to confirm it tomorrow. tbh when told 25% i wasn't quite sure if they meant i had 25% left or 75% left..

Thanks for the treatment advice too - i'll persevere with the pump and rings. I'm guessing that injections of Alprostadil which is the same ingredient as Vitaros cream will cause the same awful pain - so will investigate Invicorp with the ED nurse.

Thanks also for caring and being an active member of this group too

User

Posted 09 Nov 2023 at 11:55

so, to clarify...

In prep for my consultant call i've been rereading relevant NHS emails. The op was planned to be a nerve sparing one, but due to complications during the op i lost 25% of the nerves (so, partial nerve sparing).

I collected my status, and emailed the ED nurse, especially about the Vitaros cream, and asked for further suggestions, mentioning Invicorp by name. It was a useful exercise, in prep for the consultant call.

I'm a bit disappointed at it being a phone call, as the last two times i've had long discussions with staff face-to-face, i recorded it on my phone, which i found invaluable, and i'd strongly advise others to do the same - it's so easy to misremember points from an hour long chat.

Edited by member 09 Nov 2023 at 11:57 | Reason: clarification

User

Posted 10 Nov 2023 at 10:12

The consultant chat was useful in closing off the initial post-op chapter. She apologised for not being able to save all my nerves, due to complications. I learnt that my pre-op gleason 4+4 was downgraded to 3+4 after post op investigations. The tumour was 20mm, so glad to have that out of me! As i had clear margins it looks like i'll just be in low grade monitoring now, for the foreseeable - however i have a few minor investigations needed to bladder and kidneys, as she'd noticed stuff while she had me open.

After the Vitaros cream caused too much pain, my ED nurse suggests i first try Alprostadil injections at a low dose, to see how i tolerate them, and see their efficacy. She also suggested i switch from Tadalafil to Sinfandel for a while, to see that makes a difference. Fingers crossed !

User

Posted 16 Nov 2023 at 19:39

Good one 🤣

User

Posted 17 Nov 2023 at 13:24

I also thought the Firmtech rings looked a bit too big for me. So I ordered the smallest tightest version. I was rather amused at the very macho name MaxPR. It gives me very good support and is the first ring I have found that I can easily get over my balls without hurting them. It also has the portion that goes just around the base of the penis which I find helps a lot with sustaining firmness.

User

Posted 17 Nov 2023 at 14:00

Lyn

Reminds me of a story (I am sure it is made up!) of US selling condoms to Russia during the war and marked the large size as small!

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 19 Nov 2023 at 22:47

The firm tech ring is not for use with a pump, you will need some natural (or chemical!) Function to make use of the firm tech or the durex ring.

For the erection pumps you should have dedicated constriction rings that are designed to be used with the pump. These are a different league of constriction to the firmtec or durex ring and they have to be sized and experimented with to get a firm result.

Edited by member 19 Nov 2023 at 22:47 | Reason: Not specified

User

Posted 19 Nov 2023 at 23:06

Ideally you need to use a medical grade pump: SOMAerect (iedicare.com or medicare.com) which comes with three sizes of rings. In the UK you can obtain a prescription. For a sustainable and strong erection you must use the right size ring for penetrative sex. For more information send me a private message.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 19 Nov 2023 at 23:08

John Kelly

There is a lot of unintentional misinformation floating around in this thread. See my response above.

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 20 Nov 2023 at 15:45

New firm tech ring arrived today 😁 It's a pretty slimy black thing so certainly looks "dirty" fingers crossed it doesn't scare the horses!

User

Posted 20 Nov 2023 at 16:01

Originally Posted by: Online Community Member

New firm tech ring arrived today 😁 It's a pretty slimy black thing so certainly looks "dirty" fingers crossed it doesn't scare the horses!

😂 Wow, that was quick!

Did you get next day delivery?

I can't wait to read your ebay feedback. 🤣

I went for the Big Boy version https://www.ebay.co.uk/itm/282382029051

Edited by member 20 Nov 2023 at 16:36 | Reason: Not specified

User

Posted 20 Nov 2023 at 19:09

Originally Posted by: Online Community Member

New firm tech ring arrived today 😁 It's a pretty slimy black thing so certainly looks "dirty" fingers crossed it doesn't scare the horses!

😂 Wow, that was quick!

Did you get next day delivery?

I can't wait to read your ebay feedback. 🤣

I went for the Big Boy version https://www.ebay.co.uk/itm/282382029051

Stop Boasting…hope you e got a screwdriver to hand!🤣🤣

User

Posted 21 Nov 2023 at 09:00

Actually that might just be better, just don't slip with the screwdriver!

User

Posted 24 Nov 2023 at 19:03

Well think I must have the big one as it was not quite as tight as I would like (eBay didn't offer sizes!).

But, I have to say it is really nice to use, easy on and off and because it's not as thick as the durex one it doesn't feel like a "depth stop"!

Missus said she like it too! Didn't scare any horses.

User

Posted 01 Mar 2024 at 01:04

Well Lyn I have been so impressed with my "Slug" I ordered the "Max PR" version that they recommend for prostate survivors.

After a long delay (customs) and it arriving with the requisite customs description for the postman I can confirm the Max PR version is worth the delivery cost.

It really is way better than the old faithful durex ring, it is easy on, easy off, and doesn't "interfere" with the action.

One other major benefit, it isn't made of latex so my missus doesn't get an itchy fanny, that results in even more opportunities to make the most of our life together!

Firm Tech Max PR highly recommended!

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User

Posted 27 Oct 2023 at 22:43

That doesn't sound right. I was like you. Gleason 9, positive margins, spread into seminal vesicles. Invicorp was the only thing which worked but only lasted 45 minutes. Fight for invicorp. The alternatives had me bent over double in agony.

I now have a penile implant but you need to try invicorp first. I'm not overly impressed with the implant.

User

Posted 27 Oct 2023 at 23:43

Trentender, I was supposedly non nerve sparring, with positive margins etc. I did get some stirrings soon after surgery. I was put on daily 100mg sildenafil, I took it for months but it didn't achieve what we expected. I did get some semi erections and the odd surprise. I opted for the muse alprostadil pellets but eventually went onto caverject injections.

Thanks Chris

User

Posted 28 Oct 2023 at 00:02

Another Invicorp fan here. It's the only thing that works for me.

In fact it's that good, that when the wife sees me take a phial out of the fridge, just like sex pre op, she starts to feel one of her headaches coming on.😉

Edited by member 28 Oct 2023 at 00:06 | Reason: Not specified

User

Posted 28 Oct 2023 at 10:40

Thank you for the feedback and advice guys....this whole thing is such a minefield!! I know I don't want to feel as if I have slammed my penis in a door ever again!!

So by the sound of it the sildenafil may well not work? But the Invicorp won't have the same agonising effect as the Vitaros?

User

Posted 28 Oct 2023 at 11:06

I've had no problems with Invicorp. It works within 10 minutes and lasts for well over an hour, which is far longer than I can. 😁

I think the inventor should get the Nobel prize for medicine.👍😉

Adrian

User

Posted 28 Oct 2023 at 11:09

From where I am right now that sounds like a total dream!!!!!!!!!!!! 🤩

User

Posted 28 Oct 2023 at 18:23

High Trentender

It is a shame that the Vitaros does not work for you. I have noticed that many men can't cope with injections and they don't want implants and Viagra type drugs don't suit them. Because of my age we decided not to use any invasive treatment and opted for VEDs. It is far from ideal and requires a great deal determination and good communication in your relationship. However I would suggest to you that, if all else fails, you should try and use a penis pump. We have been using pumps for 12 years very successfully, it has some advantages over other methods. Have a look at my thread on this site:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 28 Oct 2023 at 21:45

I think the afterpain is a separate issue, as far as the consultant is concerned. The point is that vitaros cream doesn't work for most men - it isn't strong enough - so if you had a prolonged erection using the cream, you would be at very high risk of priapism if you tried one of the injections.

Try the daily sildenafil and see how it goes over the next few months. Once you have been taking it for a while, you could try missing it one day, taking 4 the next day and see what comes up?

Edited by member 28 Oct 2023 at 21:45 | Reason: Not specified

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

User

Posted 29 Oct 2023 at 07:32

I am 18mths post surgery and I have tried the injections, tablets and the VEDs. I am beginning to get some erections back, but still rely on the VED mostly. I don't like injections generally, so doubt I will be carrying on with that. The muse option sounds appealing and was wondering how you apply that?

User

Posted 29 Oct 2023 at 08:07

I found it wasn't as reliable as the injections,it has to be kept in the fridge and I have no idea about it's availability at the moment. Picture of applicator in link.

Thanks Chris

https://images.app.goo.gl/g1awKpZnu65owiaw6

Edited by member 29 Oct 2023 at 08:09 | Reason: Not specified

User

Posted 29 Oct 2023 at 10:49

Thank you mate....I am still using the pump but feel a bit wary of the rings...they seem pretty snug to look at but I will pluck up the courage (grown the balls??!!??) to use them!!!

Your thread was really encouraging to read...thank you!

User

Posted 29 Oct 2023 at 12:25

Trentender, the durex pleasure rings are not as tight, the don't hold the erection as well but I found they didn't make the penis cold and less sensitive.

I managed to get a testicle inside one of the white harder rings. The wife had to cut it off, not funny at the time but we laugh about it now.

Thanks Chris

User

Posted 29 Oct 2023 at 13:17

Originally Posted by: Online Community Member

The wife had to cut it off, not funny at the time but we laugh about it now

The ring, not the testicle .... 😬🤣

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

User

Posted 29 Oct 2023 at 13:33

I think it's sensible (subject to clinician approval) for anyone who had non-nerve-sparing surgery to try max dose PDE5 inhibitors occasionally (100mg Sidlenafil or 20mg Tadalafil) because there are cases where the nerves were not all lost even when the surgeon thought they were, and recovery happens. Also, vary rarely, the nerves will regrow, although that takes around 3 years (and it's quite likely all improvement after 3 years is due to new nerve growth). Trying the PDE5 inhibitors will give you the first indication that there's some nerve function working. Don't take them with injections or Vitaros or MUSE because you won't be able to tell if they're working (and they might increase chance of priapism). Also note that it takes 4-8 failures with a PDE5 inhibitor before you can say it's not working, as they don't necessarily work every time (unless you have to give up sooner due to unacceptable side effects).

You are perhaps very sensitive to Alprostadil (Vitaros isn't strong enough to work for most men), and if you try Invicorp which works the same way although different drugs, you probably want to start with lowest dose.

User

Posted 29 Oct 2023 at 14:02

Originally Posted by: Online Community Member

The ring, not the testicle .... 😬🤣

🤣🤣🤣That made me laugh so much I had to change pads.

User

Posted 29 Oct 2023 at 14:36

Thanks mate - the Durex rings sound a safer bet but I will certainly avoid any testicle involvement!!!! Talking of tight testicles I am a bit nervous about the imminent Forest match!! 😬

The ring, not the testicle .... 😬🤣 I laughed so much the tears ran down my leg!!!!!!!!

User

Posted 29 Oct 2023 at 14:40

I am really glad you guys are out there!!!!!!!!

User

Posted 29 Oct 2023 at 16:48

Originally Posted by: Online Community Member

The wife had to cut it off, not funny at the time but we laugh about it now

The ring, not the testicle .... 😬🤣

I was going to edit it, but then thought it might put a smile on someone's face.

Good to see you back on here lyn.

Thanks Chris

User

Posted 08 Nov 2023 at 13:17

My first post in the group, so a little introduction. I'm 68 and I'm coming up for 3 months after my RP, non-nerve sparing (i think i've lost 25%) surgery, but clear margins. I have my post op consultation tomorrow, by phone - hardly the 6 week in-person meeting i was expecting.

I got onto a regular Tadalafil 20mg as soon as i could, though i'd been using them before successfully they're having no effect so far.

Initially prescribed an Osbon ErecAid Esteem vacuum pump, but couldn't get on with it.

Surprisingly, after mentioning this to the ED nurse, i was then prescribed SomaErect Respose II, which is much more comfortable. I've only tried the tension ring once, and that didn't maintain an erection, but i'll keep experimenting

I was also prescribed Vitaros, which provides me with a semi-erection, but also the most awful dull ache near the base of my penis - i cannot describe well how it feels, but it's not worth a semi - does anyone know if this sensation would wear off if i kept at it?

i'm very much a 'grower', rather than a 'shower', and was wondering if this plays any part in ability to get an erection, as i simple-mindedly think i need to get more blood into my penis than a 'shower'. I know this is a very inexact question, but does anyone have a comment, or view, on this?

Also, i'm finding it very disheartening ,having previously had a good sex life with my partner, with little luck so far with erections - i hadn't realised how having them was such a big part of how i felt as a sexual being. Is 3 months in way to soon to be getting disheartened?

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Erection insanity - any experience out there?

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