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One wife's story of ED

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User

Posted 03 Feb 2020 at 19:33

I couldn't get a prescription pump at first so I turned to Amazon. At first I got one with a squeezy ball type pump which didn't last long. You can buy all the bits, tube, actual pump unit and seals separately. Then I found a handle/trigger type pump seperately which I have had for over a year and it works perfectly. I also bought seperatly seals which I had to trim, they are cheap so you can get a selection. Also a longer tube to join the pump to the penis tube. The cheap ones are not so easy for transferring the ring from pump to penis without losing the vacuum, but once you get the hang of it it's ok. One advantage of the cheap one I got is it is light and will hang on while standing in the shower etc. and I can stand at the basin and hang the pump part on the cupboard door to support while shaving. The seal I got separately is actually more comfortable than the prescription one. All in all if I could only have one now it would be the light weight cheapy but with the rings from the prescription one. You can by the proper rings alone from Somarect.

Performance wise they do exactly the same job.

My cheapy doesn't have a pressure relief button, so just pull the connecting tube off when I need to release.

Good luck to you both

Cheers

Bill

User

Posted 05 Feb 2020 at 23:28

I think with spinal mets you should talk to the oncologist before trying to have intercourse in case there is potential to do himself great harm.

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

User

Posted 06 Feb 2020 at 10:29

It's ok Lyn, we've already discussed possible risks, but thanks for asking - to be honest, there's not a lot happening in that department anyway!

User

Posted 06 Feb 2020 at 21:57

Anyone that says PCa is the best cancer to get needs a smack in the eye, don't they?

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

User

Posted 07 Feb 2020 at 11:05

Totally agree and if one more person tells me to keep my chin up and stay positive, they're going to get a smack in the eye as well. We are doing the best we can considering that our life has been turned upside down in a just a few months, and we know for sure that it will never be the same as it was.

User

Posted 21 Feb 2020 at 19:56

One word - Invicorp 👏😍🥒🥴🕕🏆

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

User

Posted 21 Feb 2020 at 21:03

Yep it’s the bees knees for sure !

User

Posted 22 Feb 2020 at 01:49

Nope, it was the beekeeper's penis - didn't seem to affect his knees at all 🤣

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

User

Posted 22 Feb 2020 at 02:06

Originally Posted by: Online Community Member

Anyone that says PCa is the best cancer to get needs a smack in the eye, don't they?

I’ve always said: “They say it’s the least worst”, which is probably true, as if I had been diagnosed with pancreatic cancer over two years ago I’d be dead by now.

Cheers, John.

User

Posted 22 Feb 2020 at 09:22

How long have I been telling you Lyn .......

Glad it hit the spot I’m sure

User

Posted 22 Feb 2020 at 10:11

The issue has been the new ED consultant who replaced our ED nurse - his stance has been "nothing will work, no point trying" which isn't really what you want from your medics. So it has been a battle but we got there in the end.

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

User

Posted 22 Feb 2020 at 10:35

Well I’m glad. I just bought the blo*dy stuff online. I’m sure my doc would prescribe it if I needed. I’m luck he’s not stopping Cialis. Quite miss the old Invicorp though. Best erection ever and all feels natural too !! :-))

You’ll have bags under your eyes ;-)

User

Posted 02 Jan 2022 at 12:22

Realised that I haven't updated this thread for a verrrrrrry long time! We continue to cycle between invicorp, viagra and levitra - quite how the GP hasn't realised that he isn't supposed to be issuing prescriptions for the tablets I don't know but we won't say anything if he doesn't 🤷‍♀️

John still has a tendency to order more than we actually use; currently we have 4 boxes of injections in the fridge which the children thought hysterical when they came home for Christmas :-/ Gonna have to get on with having some sex as one box goes out of date next week. Why aren't we using the stock! Partly because he is still fixated on timing - can't use it too late in the evening in case of priapism & a 2am dash to A&E, can't take it on holiday unless we are driving / ferrying with a travel fridge - and partly because even after all these years, we haven't quite negotiated the loss of spontaneity. As a result, if he injects and then presents me with the result, I resent the assumption that I will be up for a session and, as he has completely forgotten how to do foreplay or romance, the words "shall I do an injection?" just make my heart sink. Perhaps it is my age rather than anything to do with him & prostate cancer.

There was a moment of joy recently. He woke up with an erection a couple of weeks ago and we had a lazy morning bonk - I think that may have been the second time in 12 years and it was wonderful. I mourn the morning sex more than anything else, I think.

In summary, J does not have prostatectomy or RT-induced ED, this is very clear. His ED is entirely down to the psychological impact of the treatments - the cycle of doubt / will it work / how long will it last / is there any point starting if it is likely to go wrong anyway has completely messed with his head and, to be honest, mine as well. When new members join this forum and tell us that their surgeon or CNS has told them that ED is a small risk and reassured them of all the ED treatments available , I feel sad & frustrated; I don't think that the medics really understand the difference between physiological (mechanical) and psychological ED.

On a happier note, Dad is 85 soon and, thanks to Caverject 100, is enjoying a healthy relationship with his latest lady 🤯 😳😂

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

User

Posted 02 Jan 2022 at 23:57

Thanks for the update Lynn and being brave enough to be so candid with your experience. I imagine you have not shown it to John, maybe you should so that he could see things from a different perspective.

While PC maybe easier to cure than some other cancers (in some circumstances) it certainly has enormous challenges for the couple even after the all clear is given. ED is a massively significant thing for any couple to deal with and ED doctors and nurses seem to sweep it under the carpet, after all you don’t need an erection to enjoy sex. That is of course perfectly correct, and when I could get an erection often sex didn’t involve penetration but that was through choice because we were doing some other fun thing. Take that choice away and it’s a whole other ball game (no pun intended).

I wish this charity did more to publicise the difficulties men, and their partners, face during or after treatment. Many of my friends seem to think that just because my PSA readings have been ‘undetectable’ for over a year that I’m cured and all is well. There is so much ignorance out there but the public face of the charity just seems to ask for cash all the time. Maybe if they made it known that apart from continence issues following some treatments, the sufferer is more than likely NEVER going to have a purely natural erection again and in many many cases will simply never have an erection again. Then maybe men and their partners would press their GPs harder to get tested every year, even without symptoms, say over the age of 50 or younger where there are symptoms or a family history.

While I have felt somewhat sorry for myself, having had non nerve sparing RP surgery, I find that the issues you’ve detailed and had to put up with are just awful. For me, Viagra nor Cialis have worked and neither have injections of Caverject or Invicorp. The only thing that gets close is a pump but that I find isn’t ideal and can be somewhat uncomfortable. Hence why I’m now going ahead, this week (Covid issues permitting), with surgery to fit penile implants. While this is a very mechanical device I sincerely hope it’s going to be the answer my wife and I have been looking for and that our sex life can get back on track.

Maybe implants shouldn’t be a last resort at all, when all other avenues have been exhausted, maybe it should be offered in many other cases too.

I’ll let you know how things go.

Edited by member 03 Jan 2022 at 00:01 | Reason: Not specified

User

Posted 03 Jan 2022 at 01:02

"Then maybe men and their partners would press their GPs harder to get tested every year, even without symptoms, say over the age of 50 or younger where there are symptoms or a family history."

I suspect that the opposite would happen - men would be less likely to mention any problems to their GP and more reluctant to go through diagnostics if they knew the can of worms they were potentially opening.

John does not use the forum but I frequently read things to him and he generally knows what I am posting. He is a member so I am careful not to post anything that would be a shock ... apart from the urine leaking during oral sex (which would crush him and he has no need to know about).

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

User

Posted 03 Jan 2022 at 08:34

I have to disagree Lynn. As a man, if I knew all of the ramifications of getting PC ahead of time I would have made sure I got tested regularly and I suspect many others would too. The first GP I asked about having my PSA checked pretty much refused due to the fact that there are too many false positives. The second one I asked, some 10 months later, was fine with it, hence my diagnosis. I had no symptoms and not everyone does which is why it’s so important to be checked. A few of my friends are doctors and they believe annual testing is the way to go until we get a simple reliable screening program up and running, which of course is way overdue. The latest info is that it may take another 5 years to get there. Even using current data, not including Covid delayed diagnosis and treatment, that’s another 60,000 deaths!

User

Posted 03 Jan 2022 at 22:06

Great update Lyn. Dad is still amazing!!

Ido4

User

Posted 20 Feb 2022 at 13:34

Lyn

I just wanted to say thank you for your post. I am now 4 weeks post RP and have nothing going on at all and am just hoping even a tiny twinge or pulsation gives me some confidence that something may happen. I am on 5mg of Cialis as well and have been on them for 2 weeks.

it is so mentally hard on not only myself but also for my wife too. Even a cuddle in bed on the sofa I am totally thankful for as I can easily imagine that the after effects of PC can kill some relationships. Don’t get me wrong, we have had some cross words and it could be easy to say “oh I give up” as I am coming from it from a different perspective sometimes.

I know these side effects of PC are shitty and it is so hard on the man and the woman for sure.

I hope that masturbation and use of the pump when I finally get one and am told I can finally start using one will give me a little surprise 😂 I am hoping my wife will even get involved but I also have this niggle in the back of my mind that it will always be ‘mechanical’ going forward. I could be wrong though and hope my thoughts change one day.

I just would love to make love again as it was good before the surgery and it does scare me that I may never get that back and the stupid thoughts in my brain of will my wife stay, will she find sex somewhere else is often there.

Sorry for my waffle as this was only to say thank you to everyone who has commented and Lyn for your honesty. Tomorrow is another day and onwards and upwards! (Wishful thinking) 😂

User

Posted 20 Feb 2022 at 17:23

Hi Steve

I've just read your post to Lyn, and tbh whether you had nerve sparing surgery or not, give yourself a break. You are 4 weeks post op which is nothing. We all hope that we’re going to be the one that’s different and that we’ll be able to perform like we used to but that’s just not realistic and probably after 12 months, let alone one! Mine wasn’t nerve sparing and it took at least a year to get any twinges and although I could tell that there was some improvement with regards to my erection it was never going to be enough and actually life is too short. Injections, painful and unpleasant and usually didn’t work for me. Oral drugs completely useless and although the pump gave a physically better result, it was uncomfortable and less than satisfying. I could have waited to see if things got better but as I said life is just too short which is why I’ve gone down the implant route. I’m less than 4 weeks post op and as yet it is ‘untried and untested’ as I’m waiting for my follow up appointment but I know for me this is the best chance I have of getting in some way back to normal. Don’t try to run before you can walk. Expect disappointment along the way but keep talking with your wife. Don’t delay using the various options available. If one doesn’t work well, move on. I consider myself very fortunate to have had implant surgery only 17 months post RP, with Covid delaying things, but I know that I would have waited far longer had I not been proactive and pushed for it.

All the best for the future. If you’d like to DM me feel free.

Rgds

Rich

User

Posted 20 Feb 2022 at 18:18

Steve, even though you cannot get erections at the moment, you can still have an orgasm and ideally, your wife can help you to achieve it with lots of lube and a firm hand! Orgasms can be a bit painful to begin with but the sooner you learn how to achieve it the better.

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

User

Posted 20 Feb 2022 at 19:31

Steve, the 5mg daily Cialis is unlikely to be enough to help you get an erection at this stage. Its purpose is to improve blood flow around the nerves to speed up their recovery and to improve blood flow in the flaccid penis to reduce chance of damage caused by lack of erections. The pump is good to use too for this, but usual advice is no pump for first 8 weeks - check with your clinicians. This would suggest you had nerve sparing surgery.

You might also want to ask for some event doses of PDE5 inhibitors to try for erections, such as 100mg Sildenafil (Viagra) or 20mg Tadalafil (Cialis). These won't speed up recovery, but may alert you earlier that recovery is happening which is a big psychological boost and may enable you to have sex more easily.

User

Posted 20 Feb 2022 at 20:16

You need to lighten up Steve, the pressure you are putting yourself under garuantees failure!

Concentrate on enjoying intimacy without penetration, enjoy giving your wife pleasure without expecting it back.

If things are physically Ok in the dick dept you will find out soon enough.

User

Posted 20 Feb 2022 at 20:55

Ah yes - the dick department - a well known and popular section on the 3rd floor at John Lewis 😂

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

User

Posted 20 Feb 2022 at 21:02

Thanks everyone who replied. You are so right, it is early and I need to let time take its course!

as for the dick department, let’s hope and see one day 😂

User

Posted 16 May 2022 at 23:24

To LynEyre,

Your transparency is so important. I think you should start a podcast and interview many of the people on this post. including me. :)

User

Posted 20 May 2022 at 20:16

Agreed Albertacam. LynEyre's wise, knowledgeable and non-prudish posts in this forum are a rock to those of us experiencing the consequences of PC.

User

Posted 21 May 2022 at 00:02

I don't think John is feeling that positive towards me at the minute 😬

We have a refugee staying with us which means no privacy and certainly no injections / rumpy-pumpy on an afternoon (and as some of you will have read above, J absolutely will not inject after about 6pm in case of A&E trip for priapism). So we booked a hotel last weekend as it was our wedding anniversary. He packed an injection, toys & lube. Unfortunately, we failed to communicate ... there I was laid on the bed naked wondering whether he was ever going to make a move, while he watched the rugby. When the rugby finished, I apparently didn't give any clear signals (🤷‍♀️ I was thinking that if he wanted sex, he would make an effort - silly me) so nothing happened. During the evening, I pointed out that he seems to have completely forgotten how to do foreplay or romance; leaving the Invicorp box on the counter is not quite the same as a massage or whispered love notes. We agreed that morning sex the next day would be fun instead but again, it didn't get going. Discussing in the car on the way home (him gripping the steering wheel with white knuckles and me looking anywhere but at him - there's no escape when you start a difficult conversation on a 2 hour car journey and I should have waited until we were nearly home) he said that he wasn't sure what we had agreed the previous evening.

And they say romance is dead. Hoping the refugee goes out tomorrow - I have given him a car!

Edited by member 21 May 2022 at 00:23 | Reason: typo

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

User

Posted 21 May 2022 at 06:28

Thank you all for your very open comments. I will keep them in mind when OH is rid of the catheter (1st June) and make sure he does not worry about performance but instead concentrates on loving cuddles and leaves the rest to chance.

Any other advise to help him relax would be most gratefully received.

Wishing you all the very best

User

Posted 21 May 2022 at 13:45

Lynn, have you guys considered going down the implant route?

My wife says it’s like it used to be! Spontaneity is back and so is my confidence. It was the best decision we made and having just got back from a great vacation in Mexico I am so pleased I had the surgery.

All the best 👍

User

Posted 21 May 2022 at 14:01

The thing is, he doesn't actually have ED as in the mechanical ED caused by the op or as a late side effect of the RT. As i have written in this thread in the past, John's problem is psychological - he is frightened of it going wrong so he relies on the injections or tablets as a crutch. On a rare occasion when I have caught him off guard (e.g. woken him up in the middle of the night or something like that) he has absolutely no problem getting a firm erection - it just doesn't last very long because he panics.

A lot is written about the mechanical ED but I think that for many men, the bigger problem is the psychological impact of being diagnosed with and treated for prostate cancer and this is simply not acknowledged by medical professionals.

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

User

Posted 21 May 2022 at 17:29

Ah, understood!

User

Posted 22 May 2022 at 08:48

Back in 2014 you wrote:

Originally Posted by: Online Community Member

Sadly, our intimate life is in tatters. [J] is so anxious, so lacking in confidence or belief and any failure can set him back by weeks.

...

As a man lucky enough, like J, to have a positive and engaged and supportive partner, I recognise J's struggles. I am blessed with excellent support including the Recovering Men global support group. And at 26 months post RP I can sometimes get and maintain full size, fully hard erections which are a great joy to me and add a lot to our otherwise-varied sex life as a couple. Other times I feel very sad when trying to thrust with a limp penis.

But I do realise that I am still getting used to my erections no longer being a reliable source of fun and manifestation of life force in me. It is an ongoing learning process for me, which is easier because there are as you say many other options for love making that don't depend on hard natural erections.

In spite of all that, I empathise with J for being thrown by the thought of my erection fading in the middle of sex, which it often does - and that thought is often enough to make it fade quicker. It is part of my wiring. Last night we went to bed in the dark due to a power failure and we were able to go "all the way" - I am reflecting this morning on the complex inner struggles to notice the fears of so-called failure and let them go.

My wife has written brilliantly on how most women are introduced to the complexities of preparing for so-called "natural" sex at a much earlier age than men, for example due to menstrual cycles, taking greater responsibility for birth control, childbirth and all the associated medical interventions. I have learned a lot from her about setting aside my male insistence on everything being "natural" - at our age and after cancer treatment, we need to invest in preparation for sex. Her full article is at https://www.recoveringman.net/what-is-natural-sex-for-a-woman/

Edited by member 22 May 2022 at 08:49 | Reason: Not specified

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