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Erecting the Erection - Medication

User
Posted 21 August 2015 15:18:41(UTC)

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny

 

 

 

User
Posted 24 September 2015 10:23:25(UTC)

Hi,

 

I'm just over 4 weeks post-op (RRP, only partially nerve-sparing) and whilst I know that is pretty recent and also that this is not a short journey, that doesn't necessarily make it easy (or even much easier).  Oddly, my libido has seemed to increase since I was diagnosed, but whilst I never suffered from ED before that point, I found that I pre-op I just couldn't get a satisfactory erection (I put it down to anxiety about the forthcoming op), and as for post-op, well there's been the odd tingle but otherwise absolutely zilch thus far.  I've not yet been referred to the ED clinic but I've asked the nurse co-ordinating my treatment to make sure I get passed across.

 

SWMBO* is being very loving and couldn't really be more supportive, but - if you'll pardon the unfortunate pun - it is hard.  As blokes, our sexuality and sexual persona is so closely bound up with our sense of who we are that to suddenly find that there's no response from below when called can be difficult to deal with.  I love her now as much as I ever have (we've just had our Pearl anni) but the fact that I can't express that physically in the same way is surprisingly upsetting.  The surgeon warned us very clearly that spontaneous erections would be very unlikely post-op and whilst you think 'well, at least I'll hopefully not have cancer any more' the reality is still a blow.

 

Les - You do sound very 'down'; please don't be afraid to seek help.  Ask for it from the professionals: some years ago when my Dad died of stomach cancer I found it incredibly hard to deal with, and I sought counselling.  It didn't 'make it all better' but having someone outside of my life I could open my heart to gave me the space to work through my grief and find a way of coping with it.  There are various support routes open via this site, or you could ask your GP to refer you to a counsellor.  There are specialist ones for us cancer-sufferers, whether you go alone or together.  If you can talk to us anonymous strangers on here about how you feel then you can certainly talk to a professional.  You're not going through this completely alone, you know.  I've asked my co-ordinating nurse to refer me for that help, as it happens.

 

I'd echo many of the responses on here:  try to trust your wife and allow her the space to care for you.  The fact that you can't yet get an erection is not the end of the world, and there is more to love than (as Alan Bennett and John Fortune put it) 'putting it in and jiggling it about a bit'.  I'd also try to lay off the ale as best you can - it will do you no physical good, won't help the incontinence, and will make your ED problems worse.  I speak as a fellow ale-lover who has several dozen assorted bottles in the garage that SWMBO won't let me touch yet!

 

To all the other respondents to this thread - many thanks for sharing your experiences: for those of us just embarking on the journey it is very valuable to hear how others fare.

 

*For the uninitiated, SWMBO = She Who Must Be Obeyed.  From the Rider Haggard adventure novel 'She', and was used by Rumpole as shorthand for his wife - the dreaded Hilda.

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User
Posted 08 September 2015 12:55:44(UTC)

Hi everyone
I know some newer people are interested in this , and some members are not, so please don't take offence or look away now ! Its a fairly long post .
I'm 11 weeks post LRP , double nerve spare , 100% continent , no natural erections yet , been using a simple pump for 4 weeks to help recovery.
Yesterday was my 2nd ED clinic with 2 separate appointments. The first appointment was for a SOMAerect vacuum pump demonstration from the company rep . You seriously could have written this into a comedy. The office door opens and out walks a seriously stunning 30ish blonde in flowery leggings , crop-top , 4" heels , red lipstick and nails . Honestly ! She had a personality the size of a bus and was just lovely. It worked fine for me but I expect other men would turn and run having seen her. Within 10 minutes with me stood and her sat uncomfortably close and using the pump , I had an erection superior to pre-op , in no pain , and was told it would last for 30 mins. It was truly comical her persuading me she could get it harder. One of the weirdest days of my life. So out I walked with a prescription for the pump and a spare set of rings. I thoroughly recommend this device and a demo to anyone wanting to start recovery. Things were going fine .
I then had to wait a couple of hours to meet the male ED nurse assigned to me for a Caverject demo/appt.
This is NOT for the faint-hearted ok ! A needle the size of the tummy self-injections post-op , which has to be fully inserted into the side of your penis at the base , trying to avoid any small veins etc. I am not at all scared of needles or a bit of pain , but this did hurt and i'm not sure I could do it myself. He showed me 2 available systems and we used 15mg of the available 20mg in the syringe. Within 10 minutes I was 80% erect but not good enough for penetration. I suspect in the "right" circumstances with a partner and stimulation , he would have risen to the challenge . HOWEVER , unfortunately , my entire penis from tip to base was throbbing with pain. So much that I wouldn't be wanting intercourse to be honest. I was sad because I thought this would be the holy-grail ( I think Lyn told me it might not be ! ).
The nurse said as with everything not to give up first go. And I wont ! I have the pump , 4 Caverject ( I must NOT use more than 15mg until he says so ) , and my GP today has given me 4 SPEDRA tablets which are the latest Viagra.
So i've moved forward and wont need to see anyone for months with what i've been supplied. And im glad at that . I can just be sensible and try anything in time. The Caverject is definitely an "event" thing in my mind. No way would I use it for a spare hour in the evening. I'm going to stick to the pump daily to keep him fit , and use a Viagra or Spedra with the pump when we get some time . It has worked for me once.
I do hope this post is worthwhile for people on their new journey - its just honest and open
Best wishes Chris




If life gives you lemons , then make lemonade
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User
Posted 01 September 2016 10:22:17(UTC)

Hi guys and gals
You know I'm not shy , so I just wanted to share this. Since being on Cialis 5mg daily I have been having variable results but just wanted to say that by using these rings it can make the difference between a good usable erection , or something not quite upto the job. So don't be shy. Buy some now and stick them in your bedside cabinet. Best wishes
Chris

http://www.lovehoney.co.uk/product.cfm?p=34881




If life gives you lemons , then make lemonade
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User
Posted 21 August 2015 15:51:21(UTC)

Originally Posted by: Online Community Member

Hi all

Im 12 weeks post op, 

Q. is it to soon to start asking the doc for medication with regard to helping with erections?

Thanks,

Johny

 

 

 


Hi Johny
Answer to your question is Nope!
.... I was prescribed Cialis 5mg to take daily as soon as my catheter was removed at 2 weeks post op....

This was not to try to achieve an erection but rather to increase blood flow around damaged nerves in order to assist healing.... I had 50% nerve sparing...... although I believe the jury is still out on whether this is of any benefit or not...

I also have a Vacuum pump which I purchased privately, but they can also  be prescribed on the NHS if required.

I'm currently on Cialis 20mg........and in addition,as an alternative, I have been prescribed Vitaros cream to see if that has more effect..

So definitely ask your GP to be referred to an ED clinic if he/she is reluctant to help..
Luther



 

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User
Posted 21 August 2015 15:54:55(UTC)

Johny see the GP and ask advice.

Did you have any nerve sparing?

As Luther says, Cialis for keeping the blood flowing and then whatever else he suggests.

Our GP only doles out one treatment at a time but yours may well refer you to the ED clinic and give you a pump.

Don't ask - don't get

We can't control the winds - but we can adjust our sails
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User
Posted 21 August 2015 18:39:41(UTC)

Hello mate
How you doing ? Re erection , they said they would see me at 12 weeks , but saw me at 8 weeks . My area wont give Cialis daily 5mg as they say its not proven , but they recommend DAILY use of the pump and will give me a demo soon . They said I could use FULL dose of any tablet from the doctors ( Viagra Cialis Levitra Spedra ) up to 3 times per week . Don't ever mix them and best at least 24hrs between doses. But nothing has worked ( It can take up to 6 attempts apparently ). Ive been offered Caverject injections as soon as I want them , but to be honest things are so bad with our worries and future salvage that we want cuddles and not penetration .
As for continence Johny I feel so sorry for you . Is it all down to the surgeon and the day ? And their technique ? Do they all compare notes all the time to help each other try new stuff ? I was dry the day the catheter came out ( same age as you ) and remained at 95% day and night for a long time . Ive just spent a week at Centerparcs with full activity with a 5 year old and can say I am 100% at 9 weeks . Yes I did pelvic floors with the catheter in as I was told to ( many people on here said they were told not to ). I still do them every day but not sure if I need to . I get the odd squirt very occasionally .
Is it all luck of the draw ?? A couple of people recently getting full erections at 4 weeks . One of them having full penetrative sex ?? Me nothing . Others on here 14 months down the road with just a twinge . Its a very individual thing isn't it ? Have you seen the video of the operation on you-tube ? Blimey I wouldn't know where to start , and you just have to hope they are experienced and haven't argued with their partner that morning.
I can only wish you the very best on your journey , and as any man your age hope you get wood back -- im finding it very disheartening indeed
Chris and Elaine x




If life gives you lemons , then make lemonade
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User
Posted 21 August 2015 18:55:43(UTC)

Johny,

The sooner you start with the medically assisted rehab, the better.  Have you Googled Cialis to see if there is any evidence out there to support that being prescribed? I had 5mg Cialis, and Viagra from 3 eweeks pots op, a pump about 8 weeks later. I was a slow recovery but 2yrs 3 months on very happy.  Without the meds and the pump, maybe my recovery would not have been as good or taken a lot longer. 

It might hep if you make any requests in writing stating why you are asking for kit or meds. The more persuasive you are the harder it is to turn you down. Worked for me, but my GP was very supportive, all he asked for was some evidence, or at least that something might work.  It is worth noting that no all meds work for everyone.  But the use of Cialis for assisting blood circulation to and around the damaged area is, as far as I am aware, well established.  That could be anecdotal, as in what I had heard about and from others, or online. He was a diamond.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 21 August 2015 21:22:22(UTC)
Hi Johny

I had op to remove prostate towards the end of 2012 so I am well ahead of you in my PCa journey.

Whilst I do do not regret my treatment (I am alive!) sadly for me my ED issues continue so I am one of the unlucky ones so far.

However, please do not be put off by my slow progress as others on the forum have had better results. You also have some "youth" on your side which I believe will be much in your favour.

As you have reached 12 weeks I would think your wounds should have healed sufficiently for you to engage in a bit of more energetic activity as part of penile rehabilitation.

My advice is to start a rehabilitation programme ASAP. I wasn't a member of this forum until about 4 months after op and I didn't realise the importance of rehab so I lost valuable time. I think this could be a factor in my slow progress.

I know how distressing ED is so I wish you all the best with your recovery.
User
Posted 23 August 2015 20:41:47(UTC)
Hi Johnny,

Our ED nurse told us that there was no difference between Viagra and cialis, except cialis was more expensive.

I phoned the helpline attached to this website, and they found me the evidence and emailed it to me. I took it to the nurse and she agreed we could have it. It's worth a try. I might even still have the email, and could forward it to you. If you're interested, send me a message.

My OH is now 8 months post op. He's been slightly less fortunate than some others on this forum in his side effects. He's still struggling with 2 pads a day, but it is improving slowly. And his remaining one nerve bundle doesn't seem to be working as yet. I'm still hopeful. We've had the odd semi, but the psychological effects are taking their toll on that.

I think a lot of it is about the psychological effects.
Louise

User
Posted 23 August 2015 22:40:06(UTC)

Bit worrying that an ED nurse doesn't know Cialis and Viagra have different chemical components which act in slightly different ways. In very basic terms, Cialis draws blood to the area while Viagra stops it flowing away from the area. Levitra has the same action as Viagra but works slightly better for some men. All three require the man to feel randy and confident - a big ask for men with ED as a result of PCa :-(

I am not sure whether it is always explained to men about the time delay with the tablets though - some seem to expect it to work quite quickly after they have taken the tablet so maybe they miss the moment hours later when it does start to take effect?

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


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User
Posted 26 August 2015 20:47:32(UTC)
Originally Posted by: Online Community Member

Bit worrying that an ED nurse doesn't know Cialis and Viagra have different chemical components which act in slightly different ways.



That's not all that's worrying about our ED nurse!!
User
Posted 26 August 2015 21:47:38(UTC)

Viagra does not cause a man to be sexually aroused. Viagra is only effective if you are sexually aroused. To understand how it works you need to understand the mechanics of how a man gets an erection. When you get sexually stimulated, the nervous system in the erectile tissue of your penis releases nitric oxide (NO). YES!! ACTUALLY Kidding.

The nitric oxide stimulates an enzyme that produces something called a messenger cyclic guanosine monophosphate (cGMP). The cGMP relaxes the smooth muscle cells. One result of this is that the arteries in your penis dilate and the blood can flow into your penis more easily. Another result is that the erectile tissue itself fills with blood. Both of these process result in an erection. Viagra works by maintaining the level of cGMP in the smooth muscle cells.

If you are not turned on, your brain will not stimulate the release of any nitric oxide and you will not produce any cGMP.

The above is a lift* from a "how does Viagra work" Google search. SO rather than preventing the blood leaving the penis area, the Viagra maintains a relaxed state of the smooth muscle cells, and allows blood to keep flowing through that area.

My GP explained to me when I asked for, and was provided Viagra, that the sexual side aspect benefit aspect was discovered by accident. Apparently, in a South American country many years ago Viagra was introduced to assist older South American men with blood circulation problems. The Viagra worked their circulation improved. Around the same time the older South American wives of the older South American men started to go to their GPs complaining that their men had started to demand much more sex than was usual as they had become more frequently erect and randy. Eventually, the link was made, with the result that the retail price of the circulation enhancer drug was rapidly enhanced.

* I added YES!! ACTUALLY Kidding." as it suited me.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 27 August 2015 19:07:37(UTC)

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

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User
Posted 27 August 2015 20:42:07(UTC)

Hi Johny
Me and El have tried Levitra 20mg and Cialis 20mg as an "event" drug , only to find there was no event !! Not tried Viagra yet . We were advised you need to try these drugs at least 8 times to see if they work or not ( preferably 8 times Viagra , 8 times Cialis etc ). Im getting an appt in 2 weeks for Caverject . My Consultant basically looked at me and even after only 9 weeks said " those tablets wont work for you " !! Despite a double nerve0sparing operation . We think he knows im not well at all and just wants me to have a good time asap . I hate this - Elaine hates this . We are so scared and despite the stress agreed some closeness would be nice .
I hope the ED nurse goes well mate . Remember to push for your rights ok -- you're "young" like me so-to -speak to be losing Mr Woody
Chris




If life gives you lemons , then make lemonade
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User
Posted 27 August 2015 21:20:16(UTC)

Thanks Chris,

Think she gave it to me just to have a go, see what happens, not a blooming lot to be honest.

No mention of taking them for 8 times, Not had much follow up since i left hospital to be honest, iv had to push for everything.

Now i know how the game works so be it, if you don't ask you don't get, wrong really.

Johny

User
Posted 28 August 2015 12:35:54(UTC)

Originally Posted by: Online Community Member

Hi all,

just a quick update, had a chat with the doc, she recommended the ED clinic so im in the que for that.

Was also supplied with Viagra and that night................................well if you can imagine a Limp wet chip, that's about as far as we got!!!!

We had a laugh anyway, early days i suppose........next time eh

Brilliant description Johny!

Would that be a skinny french fry or a chunky cut? 

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User
Posted 30 August 2015 13:40:09(UTC)

Hi Johny
I didn't know if it was ok to use your post. It seemed the best place.
So I'm exactly 10 weeks and have been using the pump daily religiously for 3 weeks. And the Viagra 100mg worked !!! The Eagle Has Landed and all that. Yes I needed my cheap Lovehoney pump and my cheap Lovehoney stretchy rings ( four to be precise ) and there he was in all his former glory for half an hour. They advise no longer than this. I understand the mechanics of the operation but can honestly say there was no discernible change in length or girth. Actually , judging from my post-op results , they forgot to take it out maybe.
Anyway it's really good news for people who are hoping on their journeys. It can happen. Yes it's a one-off so far but here's hoping.
Best wishes to all
Chris




If life gives you lemons , then make lemonade
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User
Posted 30 August 2015 15:54:25(UTC)

Hiya Chris,

What did you order from Lovehoney pump wise and stretchy ring wise, may as well jump on the band wagon and give it a go

Johny

User
Posted 30 August 2015 16:30:01(UTC)

Ok Johny I'll PM you later . I don't know how to post links and im on the family laptop so don't want to search Lovehoney
Cheers Chris




If life gives you lemons , then make lemonade
User
Posted 30 August 2015 20:47:00(UTC)
That's brilliant news Chris! Would you mind PM me the link too?

Trish
User
Posted 30 August 2015 22:44:06(UTC)
Folks
you might want to try looking on Google search at Osben Erecaid

This is a system that you can get for nothing on the NHS it is the system that several men on this forum have recommended.

Your GP can prescribe it via mediplus.co.uk

xx
Mo
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User
Posted 05 September 2015 10:52:50(UTC)

Thanks William for that really encouraging post for people to read . As people on here have said , good news is very welcome even though some have not been so lucky with their progress . Im only just coming to 3 months now. Not having any natural erections whatsoever but many twinges so real I have to check haha . I think progress will be gradual . ED aids and medicines are beginning to work for me also. I have my second ED appt Monday and am trying Caverject ( being demonstrated ) . I can then pick and choose what I try over the months ahead.
Chris




If life gives you lemons , then make lemonade
User
Posted 08 September 2015 12:55:44(UTC)

Hi everyone
I know some newer people are interested in this , and some members are not, so please don't take offence or look away now ! Its a fairly long post .
I'm 11 weeks post LRP , double nerve spare , 100% continent , no natural erections yet , been using a simple pump for 4 weeks to help recovery.
Yesterday was my 2nd ED clinic with 2 separate appointments. The first appointment was for a SOMAerect vacuum pump demonstration from the company rep . You seriously could have written this into a comedy. The office door opens and out walks a seriously stunning 30ish blonde in flowery leggings , crop-top , 4" heels , red lipstick and nails . Honestly ! She had a personality the size of a bus and was just lovely. It worked fine for me but I expect other men would turn and run having seen her. Within 10 minutes with me stood and her sat uncomfortably close and using the pump , I had an erection superior to pre-op , in no pain , and was told it would last for 30 mins. It was truly comical her persuading me she could get it harder. One of the weirdest days of my life. So out I walked with a prescription for the pump and a spare set of rings. I thoroughly recommend this device and a demo to anyone wanting to start recovery. Things were going fine .
I then had to wait a couple of hours to meet the male ED nurse assigned to me for a Caverject demo/appt.
This is NOT for the faint-hearted ok ! A needle the size of the tummy self-injections post-op , which has to be fully inserted into the side of your penis at the base , trying to avoid any small veins etc. I am not at all scared of needles or a bit of pain , but this did hurt and i'm not sure I could do it myself. He showed me 2 available systems and we used 15mg of the available 20mg in the syringe. Within 10 minutes I was 80% erect but not good enough for penetration. I suspect in the "right" circumstances with a partner and stimulation , he would have risen to the challenge . HOWEVER , unfortunately , my entire penis from tip to base was throbbing with pain. So much that I wouldn't be wanting intercourse to be honest. I was sad because I thought this would be the holy-grail ( I think Lyn told me it might not be ! ).
The nurse said as with everything not to give up first go. And I wont ! I have the pump , 4 Caverject ( I must NOT use more than 15mg until he says so ) , and my GP today has given me 4 SPEDRA tablets which are the latest Viagra.
So i've moved forward and wont need to see anyone for months with what i've been supplied. And im glad at that . I can just be sensible and try anything in time. The Caverject is definitely an "event" thing in my mind. No way would I use it for a spare hour in the evening. I'm going to stick to the pump daily to keep him fit , and use a Viagra or Spedra with the pump when we get some time . It has worked for me once.
I do hope this post is worthwhile for people on their new journey - its just honest and open
Best wishes Chris




If life gives you lemons , then make lemonade
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User
Posted 08 September 2015 13:36:03(UTC)

Thanks Chris, could you send the rep around to me. I'm c6 weeks ahead of you and now regressing!!!!

User
Posted 08 September 2015 14:30:23(UTC)

Informative and helpful post Chris,

Well done for persevering. Worth mentioning to any other men reading this that what works for some may not work for others, and what works for others may not work for some.

No consistency it seems.

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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User
Posted 08 September 2015 14:32:14(UTC)

Hey Johny

I am 43 and 9 weeks post op. I had Davinci Surgery with full nerve sparring.

I was given 5Mg cialis 2 weeks after surgery and although I did take a few I stopped because I didnt like the side effects (flushing, stuffy nose, seeing blue dots when I blink) and thought I was doing the right thing because I wasnt ready to engage in intercorse. However I realised soon after starting that it was not meant for intercorse but for reprogramming Mr Wiggles.

I've had quite a few lazy lobs but probably only about 70% at best, nothing that would work for penetration. My GP also gave me 16 20mg cialis and although I did take one, nothing happened, and Mr Wiggles didnt get his wriggle on even though there was a lot of persuading going on if you know what I mean lol, we just laughed about it.

Its been a few weeks since anything has happened on the lazy lob front but I am now ready to start again with the 5mg cialis and with the pump which Chris mentioned. To see if it will make any difference. God I miss being active.

I totally feel your pain my friend, I've had quite a few oppertunities recently to be active but the old chap has let me down, psychologically this does mess with your head but we also need to remain optomistic and realistic in that our surgery was only a few months ago and internal healing could take quite a few months, even though we all want it back now.

I am completely dry now and have been for many weeks, although I still wear a number 1 pad, I think its more of a comfort thing just knowing its there incase I have an accident, but I do need to take a risk and see if I can go without wearing anything.

I wish you all the best, and hopefully we will all get there and get our grooves on again...

Raiden

 

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Posted 08 September 2015 16:40:38(UTC)

Chris I could just about imagine your face when she walked in.

Sounds like something out of a Carry On film (Think bouncy Barbara Windsor)

Raiden, nice to hear from you.

Good luck to both of you. I hope everything progresses well for you.

We can't control the winds - but we can adjust our sails
User
Posted 09 September 2015 10:32:22(UTC)
Chris
Brilliant post and so informative for others.
Your description of the demonstration did make me smile! !
As I said on Trish's thread you guys should all help each other sharing info on what works.
All my best wishes
Xxx
Mo
User
Posted 14 September 2015 03:05:11(UTC)
New to this forum, but have found some posts quite informative.
I was diagnosed in the summer of 2014, Gleason 4:3 and RLP in August that year, so its over a year now.
My prognosis is good, in so far as I was T2 organ contained, zero margin and a year on my PSA is undetectable. All good. I had nerve sparing surgery (50% I think, but as a result of a comment on here I shall seek clarification)
So, the reason for me coming on here.
Living with the side effects.....and the psychological impacts.
My continence is good, I dont wear pads of any description, just change underware when the odd accident happens (usually alcohol related)
However Ed is problematic.
I am on Cialis, 20mg, as required. Does not work at all with female, but has sigificantly impacted with self stimulation.
I am married and she is incredibly understanding and tolerant. As such I have been very interested to read the female perspective on here, this and other topics.
I have no issue discussing Ed, with friends, family (I have two grown sons) and other females. Plenty of dark humour, poetic justice was a comment that made me laugh.
So a year on and I am now referred to the Ed clinic, I have probably left that a little late.
But, that not withstanding, I have become quite depressed, the sort of "lets end this now" type of depression. Being a controlling type of person (narcissistic I suspect) this seems "SpockLike" entirely logical? At 63 and led a full life even more so.
It is this that I seek comment on, especially from the female perspective as leaving her behind is the main restraining factor.
I am hoping that treatment for Ed will lift the mood, which I am sure it will temporarily as I seek to take advantage, if it works. My sex life is active, apart from penetration, for clarity.

So, a long winded way if asking, but are my psychological impulses normal or am I up my own rear end in self analysis?
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Posted 14 September 2015 08:11:39(UTC)

Les Hi
Ive messaged you aswell to say hello . I think you will get a lot of support from members on this site . There are no end of kind understanding people a lot further on than us in their experiences . However generally they seem to be up-beat people who will ( and are ) doing anything to fight this disease and try to beat it. Im sure they have a level of depression but when it gets as low as you are saying it becomes serious . Im in the same boat as you , and am now looking at an even bigger fight . I didn't want treatment in the first place ( yes silly me ) , and now after treatment I wonder whether life is worth living and if I can face all the future treatment . I guess your comment about your family says it all . You do it for THEM . I have a 5 yr old boy . I couldn't NOT have the treatment done . You have left ED recovery a fairly long time but with an approach to the hospital clinic you are moving forward and it will give you something to work on. Being impotent does get us all down for sure . Yes you can still have lovely times but all men want penetration essentially , and I know most women miss it when it is gone , but it doesn't become all-consuming to them .
More support will be on its way ........
Chris




If life gives you lemons , then make lemonade
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Posted 14 September 2015 09:07:57(UTC)
Hi Les

I'm a wife, my husband is currently undergoing radiotherapy to be followed by brachytherapy. I think I speak for a lot of wives / partners when I say that although ED is an issue we're all very happy that treatment means that our other halves are going to be around for a lot longer than without treatment.

Chris, above, and I have corresponded quite a lot on this issue - I told him that I married for love not sex. You will get more input from others so I hope that the advice you will be given will help with lifting the depression.

Good luck at the ED clinic.

Maureen
"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne
User
Posted 14 September 2015 11:31:48(UTC)
Maureen
Thank you.
I dont think however "marrying for love" is gender specific. We all do.
But whether one would marry into a sexless relationship, I doubt, whether male or female.
So if a relationship becomes sexless, does that end up in the same place?
Thats the female perspective I seek.
Thanks to everyone else and the private messages. Sadly, as a newcomer, forum rules disbar me from sending private responses.
My conclusion, to date, is that becoming depressed is fairly standard.
Therefore my response must be is what to about it.
Menadering through the balance of life on drug therapy is unappealing.
This does sound dreadfully selfish, I know.
User
Posted 14 September 2015 11:54:32(UTC)

Hi Les
I didn't realise rules said you cant private message . The only reason I sent you that message is because its easier than baring ones soul on the internet publicly. I know EXACTLY how you feel and especially if no penetration for over a year . Im only 3 months . But I am bipolar 23 yrs and know depression better than I know my relatives , although I obviously don't have the answers or i'd be well !!
I feel every wife on the planet would tell their husband that sex doesn't matter and that love and life and togetherness are key , when faced with an illness such as this that would make you impotent. I guess the majority of women would mean it whole-heartedly , others would mean it and then over time resent the fact that sex wasn't the same , and of course you can then get into the realms of untrue partners etc . Im just saying it as I think it is . I was terrified at the possibility of my partner moving on , which was actually a very silly thought at the time , but its only 3 months . As men I think we have the ability to drive a woman away when having to deal with something such as this ( like a self-fulfilling prophecy ) . Its amazing that you are so in tune with your body and mind that you realise you aren't thinking straight anymore . Everyone here will tell you to book a 20 minute appt at your GP and discuss this with him/her. Its vital you look for help and if it comes in medicinal form then so be it . Some of the SSRI anti-depressants can work wonders . And moving on with the ED will help you too. When you are allowed to PMessage I would be happy to help
Chris




If life gives you lemons , then make lemonade
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Posted 14 September 2015 11:56:51(UTC)

Les, my husband also felt for a while that life was perhaps not worth living and that I would be better off without him. Over time, everything got back to normal and he knows that life is very definitely worth living. What kept him going in between times was the knowledge that his life insurer doesn't pay out for suicide, I would be left destitute and homeless and the whole family would be sad.

What you describe is in some ways common to diagnosed men but talk of ending it all is not. It is screwed thinking and needs specialist advice from your GP - don't try to muddle along on your own with these thoughts!!!!!

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


User
Posted 14 September 2015 12:23:33(UTC)
I have just been granted authority to send private messages and have responded. Thank you.
Lyn, I am not convinced that choosing not to muddle through is "screwed"
Although I absolutely accept that it is very selfish.
My wife would not be destitute, impacted, yes but destitute no.

Thinking why I am on here asking this question, I think I am looking for the absolutist response my surgeon gave me in relation to the disease.
I find that easier to deal with.
But of course with mental health issues (if this is what it is, as opposed to a perfectly acceptable solution) things are not always black and white.
I am struggling and searching for an answer....thank you for tolerating me.
User
Posted 14 September 2015 12:35:51(UTC)

We will tolerate anything Les - If they tolerated me !?! Just ask away and far more astute people than I will be along to talk and offer advice which is what you need . I'm soldiering along despite some very personal issues and feelings . It seems maybe the ED thing is what has led eventually to you getting this low . But there are loads of treatments out there and you have been slow on the uptake it seems . One or more of these could work for you in time and help turn your mood . But seriously ..... GP talk would be good




If life gives you lemons , then make lemonade
User
Posted 23 September 2015 21:44:39(UTC)
Hello Les

My husband is in a similar position to you. RRP last December, 50% nerve sparing, and ed. he is also still fairly incontinent, and that doesn't help.

From a woman's point of view, most of us would rather have thirty years with no penetrative sex than ten years with it.

It's difficult. You have the advantage of being able to discuss it. My oh would rather bottle it all up and hope it goes away. Keep on keeping on.

Louise X
User
Posted 24 September 2015 01:29:56(UTC)
Hi Louise
Many thanks for your comment.
I would encourage your OH to discuss it, in the end its a physical issue due to major surgery, nothing to be ashamed of, is it.
My first ED clinic yesterday and because of comments on here I asked a specific question on the degree of nerve sparing that had occured. There was, in fact, no notes at all referring to this by the surgeon so now I am unsure, but it does explain my physical "non reaction" if little occured.
The practitioner was very reassuring however and his confirmation of my story over the last year as not being unusual was comforting.
We discussed in great detail how "it" felt and the feelings of my wife. She has said the same as you BUT I dont believe its totally true.
The practitioner agreed with me over the lack of penetration and how that, in fact, makes her slightly insecure.
Anyway because I am able to "feel" Cialis he has asked me to use it as therapy not as an attempt to promote penetrative sex. So he has prescribed a vacuum pump to use daily along with 20mg of Cialis twice a week for eight weeks. We agreed that given its a year then if indeed there was nerve sparing then this will tease out the recovery.
You know the funniest thing? Which chemist to go to fulfill the prescription for the pump!! They did not have it in stock at the one I chose and when she asked me if it was urgent I nearly laughed.

Some light relief from the black dog of depression that seems to have engulfed me. It feels, as I share this on here, as if I am discussing a third person. Recently alcohol (I am a Real Ale fiend) consumption has increased to the point, I know, its becoming an issue as I am lying about it to her (and my sons who are both close to me). I want to stop but the early evening relief,the decent into The "Walter Mitty" land of self deception, is just too tempting.
So I do, every day.
Work is suffering and I know that my wife is sensing the detachment in me, a fact that totally undermines my reasoning to seek a remedy for the ED.
So the depression is self perpetuating and the decent accelerating.
Self destruction by a slow burn.

Its 2:20am, lets see what delights the morning brings. Perhaps my new vacuum pump will be ready for collection today. Oh what joy, the exquisite anticipation of standing in the shower and manually pumping a rather crude device on my flaccid penis.

But I am alive with a decent prognosis and my wife, women, tell me she/they would rather have me as this fractured person than not.
I fear however she refers to a memory, not the reality. A lot of which she is unaware of.
User
Posted 24 September 2015 06:57:23(UTC)

Originally Posted by: Online Community Member
Maureen
Thank you.
I dont think however "marrying for love" is gender specific. We all do.
But whether one would marry into a sexless relationship, I doubt, whether male or female.


So if a relationship becomes sexless, does that end up in the same place?
Thats the female perspective I seek.


Thanks to everyone else and the private messages. Sadly, as a newcomer, forum rules disbar me from sending private responses.
My conclusion, to date, is that becoming depressed is fairly standard.
Therefore my response must be is what to about it.
Menadering through the balance of life on drug therapy is unappealing.


This does sound dreadfully selfish, I know.

Re the above quote and from this woman's perspective

It would very much depend on what the relationship was like before it became sexless.  

If it isn't strong, but sex is a big part of it, then yes I would imagine the loss of penetrative sex would make a major impact on that relationship.

If, however, your marriage was / is strong then for goodness sake listen to what your wife is saying to you.

Only you two know the depth of feeling for each other so it's no good me  making sweeping statements about what it's like for you because we only have our own experiences to go on.

Do I love my husband now that he is no longer the man I married? Of course I do

Do I regret that sex is no longer what it was, even given our advanced age? Of course I do

Would I throw away the memories of 45 years of marriage (and believe me it hasn't always been a bed of roses)? Of course I wouldn't

Yes I married for love, but that love is tempered over the years by what you share together and the memories you make.

Don't risk forcing that separation on yourselves by trying to get inside her head and read what YOU think she is really thinking. It doesn't work like that.

Trust her, believe in her, believe in yourself.

Leave the doubts behind, together with the extra pints. Not only are they not helpful  - too much and brewers droop will rear its head anyway!!

Depression following diagnosis and treatment is understandable, but you have life.

Are you selfish - probably -  but that's human too isn't it. We all want perfection whether that's in looks or marriage or work.

What's the alternative for you both. You will drive her away in any case if you continue to think like you are.

We might love our other halves but we are human too and the constant reassurance (that is disbelieved and not accepted) can wear us down.

Please trust her own judgement

We can't control the winds - but we can adjust our sails
User
Posted 24 September 2015 07:04:47(UTC)

Les,

If you start a thread about the issues you are faced and dealing with, it will be easier for anyone to see what you are asking about and help you? As it is, your issues are mixed in among someone else issues. This is not a criticism, but a suggestion that is intended to help you get better advice and assistance.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 24 September 2015 07:26:44(UTC)
Johsan
"
Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly
I get everything you say, but this comment stood out.
Does that feeling remain as just "regret" or does it progress to something else, do you think?
User
Posted 24 September 2015 10:23:25(UTC)

Hi,

 

I'm just over 4 weeks post-op (RRP, only partially nerve-sparing) and whilst I know that is pretty recent and also that this is not a short journey, that doesn't necessarily make it easy (or even much easier).  Oddly, my libido has seemed to increase since I was diagnosed, but whilst I never suffered from ED before that point, I found that I pre-op I just couldn't get a satisfactory erection (I put it down to anxiety about the forthcoming op), and as for post-op, well there's been the odd tingle but otherwise absolutely zilch thus far.  I've not yet been referred to the ED clinic but I've asked the nurse co-ordinating my treatment to make sure I get passed across.

 

SWMBO* is being very loving and couldn't really be more supportive, but - if you'll pardon the unfortunate pun - it is hard.  As blokes, our sexuality and sexual persona is so closely bound up with our sense of who we are that to suddenly find that there's no response from below when called can be difficult to deal with.  I love her now as much as I ever have (we've just had our Pearl anni) but the fact that I can't express that physically in the same way is surprisingly upsetting.  The surgeon warned us very clearly that spontaneous erections would be very unlikely post-op and whilst you think 'well, at least I'll hopefully not have cancer any more' the reality is still a blow.

 

Les - You do sound very 'down'; please don't be afraid to seek help.  Ask for it from the professionals: some years ago when my Dad died of stomach cancer I found it incredibly hard to deal with, and I sought counselling.  It didn't 'make it all better' but having someone outside of my life I could open my heart to gave me the space to work through my grief and find a way of coping with it.  There are various support routes open via this site, or you could ask your GP to refer you to a counsellor.  There are specialist ones for us cancer-sufferers, whether you go alone or together.  If you can talk to us anonymous strangers on here about how you feel then you can certainly talk to a professional.  You're not going through this completely alone, you know.  I've asked my co-ordinating nurse to refer me for that help, as it happens.

 

I'd echo many of the responses on here:  try to trust your wife and allow her the space to care for you.  The fact that you can't yet get an erection is not the end of the world, and there is more to love than (as Alan Bennett and John Fortune put it) 'putting it in and jiggling it about a bit'.  I'd also try to lay off the ale as best you can - it will do you no physical good, won't help the incontinence, and will make your ED problems worse.  I speak as a fellow ale-lover who has several dozen assorted bottles in the garage that SWMBO won't let me touch yet!

 

To all the other respondents to this thread - many thanks for sharing your experiences: for those of us just embarking on the journey it is very valuable to hear how others fare.

 

*For the uninitiated, SWMBO = She Who Must Be Obeyed.  From the Rider Haggard adventure novel 'She', and was used by Rumpole as shorthand for his wife - the dreaded Hilda.

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Posted 24 September 2015 15:55:28(UTC)

Originally Posted by: Online Community Member
Johsan
"
Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly
I get everything you say, but this comment stood out.
Does that feeling remain as just "regret" or does it progress to something else, do you think?

 

Les, perhaps "regret" was not the right word. Possibly "sad" would have been better

 

The same sort of sadness you feel when you realise your children have changed and are growing up and don't need you so much. That doesn't go away but it does alter as their lives alter and they move on

It's like the loss a lot of women feel at the menopause.

You don't have that worry anymore about  getting pregnant but it is no longer your choice but something you now have to live with.

If you are still loving towards each other and can experience sex in a different form then you really are very lucky.

Yes penetrative sex is lovely, but so is life and I'd rather have my other half - miserable as he sometimes is bless him - than be mourning him (and if he's dead there isn't any penetrative sex anyway is there!)

I'm not being flippant about all this, really I'm not. I do understand that for  a man this is a major deal, and it may be for some women too, but at least give the wife the benefit of your doubts and believe her.

Coincidently, I had a conversation about sex with my daughter yesterday.

Four years ago she was treated for aggressive colon cancer.

That treatment in effect "cooked" her personal bits and makes it impossible for any kind of "normal" sex.  She is only 42 now so this was when she was in her late 30s.

Have they given up on each other. Not likely. She told me there's more than one way to skin a cat and she would rather be alive with "cooked" bits, enjoying what she has and what she does with that life, than mournfully remembered.

My son in law loves her deeply and has never complained that HIS life is now different too.

If you love wholeheartedly you'll put up with anything, especially when it isn't the other person's fault.

Sorry, rambling again !!

We can't control the winds - but we can adjust our sails
User
Posted 24 September 2015 15:59:53(UTC)

Chromedome, good luck with your recovery
Yes it is very early days for you.
Perhaps your body just needs to catch up with your mind!

Did you have any nerve sparing I wonder?

We can't control the winds - but we can adjust our sails
User
Posted 25 September 2015 03:49:05(UTC)
Originally Posted by: Online Community Member
Originally Posted by: Online Community Member
Johsan
"
Do I regret that sex is no longer what it was, even given our advanced age? Of course I do"

Exactly
I get everything you say, but this comment stood out.
Does that feeling remain as just "regret" or does it progress to something else, do you think?






Les, perhaps "regret" was not the right word. Possibly "sad" would have been better





The same sort of sadness you feel when you realise your children have changed and are growing up and don't need you so much. That doesn't go away but it does alter as their lives alter and they move on


It's like the loss a lot of women feel at the menopause.


You don't have that worry anymore about getting pregnant but it is no longer your choice but something you now have to live with.


If you are still loving towards each other and can experience sex in a different form then you really are very lucky.


Yes penetrative sex is lovely, but so is life and I'd rather have my other half - miserable as he sometimes is bless him - than be mourning him (and if he's dead there isn't any penetrative sex anyway is there!)


I'm not being flippant about all this, really I'm not. I do understand that for a man this is a major deal,and it may be for some women too, but at least give the wife the benefit of your doubts and believe her.


Coincidently, I had a conversation about sex with my daughter yesterday.


Four years ago she was treated for aggressive colon cancer.


That treatment in effect "cooked" her personal bits and makes it impossible for any kind of "normal" sex. She is only 42 now so this was when she was in her late 30s.


Have they given up on each other. Not likely. She told me there's more than one way to skin a cat and she would rather be alive with "cooked" bits, enjoying what she has and what she does with that life, than mournfully remembered.


My son in law loves her deeply and has never complained that HIS life is now different too.


If you love wholeheartedly you'll put up with anything, especially when it isn't the other person's fault.


Sorry, rambling again !!



Yes, I get this.
It has dawned on me that I may have two illneses. One physical in the form of PCa which I will beat albeit with side effects, and an underlying mental health issue as yet not formally diagnosed let alone treated. Thank you for your responses, these have made me realise that I need to do something about it before this deteriorates further. (I havent admitted to everything as you might understand)
Thank you

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Posted 29 September 2015 20:56:08(UTC)

Hi everyone
Many of you wont be interested , but as you know there are also many who are chasing erectile function post-treatment at the moment.
The professional pump and rings continue to serve well and definitely practice makes perfect. Once you have a system it becomes quite easy. The downside for me is reduction of normal sensitivity and the fact that you should only have 30 mins max, and that it hinders the natural progression of lovemaking.
So the other day I risked my first self-administration of Caverject. Nail-biting ? Yes. Painful ? Fairly. Although being advised in the clinic to use 15mg for now I decided to use 17.5mg based on those results that day. I achieved an 85% erection which lasted nearly 2 hrs. It wasn't as painful as before in a throbbing way. I think I should be fine to use the whole 20 mg next time. Not as good as the pump but normal sensitivity and could be administered " beforehand " which is a bonus. I'm not enjoying pill use at all and gaining nothing from it whatsoever. I find time nearly every day to get a quick erection with the pump to keep health down there.
I pray for natural recovery but am still very early at 15 weeks and doing well and not expecting anything more at all at present. I think tablets pumps and injections all have their own place and moments. Feel free to ask.
Best wishes to you all
Chris




If life gives you lemons , then make lemonade
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Posted 09 October 2015 10:03:03(UTC)

Hi, everyone. I find it fascinating that we have so many different takes on similar problems, both in terms of how we have found different treatments but also the advice and support we get. I'm 20 months on from a radical prostatectomy with 50% nerve sparing. I've used the pump but even with two rings loose hardness quite quickly. The ED nurse told me that sildenafil would be of no benefit to me but I take daily 5 mg cialis and she has suggested trying four tabs at a time to boost response. Otherwise it may have some general benefit to blood supply but no effect on ED. She also said from her experience that few people found Muse worked and didn't like using the pellets, but she gave me the same formulation in a cream which provided a warm glow but nothing else! So eventually I tried Caverject which works well. Using it is challenging but the injecting is not really painful, although it can be uncomfortable afterwards. Aside from using this I have no natural response. The big issue now is getting Caverject. My pharmacy cannot get any at the moment from its suppliers. s mothers are also using it I wonder if they are experiencing the same issue and if not, where their supply comes from?

User
Posted 09 October 2015 10:56:58(UTC)

Hi There
Im using Caverject and was initially given 4 , but my pharmacist also stated its damn hard to get hold of. It works for me too but not 100 % . Beggars cant be choosers I suppose . Pump still works well . You need very tight rings I find




If life gives you lemons , then make lemonade
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Posted 09 October 2015 20:36:35(UTC)

Originally Posted by: Online Community Member

Hi, everyone. I find it fascinating that we have so many different takes on similar problems, both in terms of how we have found different treatments but also the advice and support we get. I'm 20 months on from a radical prostatectomy with 50% nerve sparing. I've used the pump but even with two rings loose hardness quite quickly. The ED nurse told me that sildenafil would be of no benefit to me but I take daily 5 mg cialis and she has suggested trying four tabs at a time to boost response. Otherwise it may have some general benefit to blood supply but no effect on ED. She also said from her experience that few people found Muse worked and didn't like using the pellets, but she gave me the same formulation in a cream which provided a warm glow but nothing else!  s mothers are also using it I wonder if they are experiencing the same issue and if not, where their supply comes from?

Hi wightman,

What many medical professionals do not get is that not every tablet, pill or capsule work,s for everyone in the same way.   So, bluntly, your ED nurse's experience is not worth "diddley squat" to you if it closes HER mind to playing around and allowing you to experiment.

If you read through all the profiles here (you need to get out more, ;-)) you will see that many of us play about with "Meds" and treatment to see what works for us as individuals, and that may mean doing things differently.   

If I were you I would consider putting any request for medication in writing stating that "failure to give me the medication at this time may well hinder my best hopes of recovery."  Present a business case and you may get what you need?

atb

dave

 

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
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Posted 10 October 2015 01:07:16(UTC)

It is a national supply issue to do with the company failing to get their licensing docs sorted last year. In many areas, the dual chamber Caverject has not been available for months now - there are other threads on this forum about alternatives such as the single chamber injections.

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


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Posted 10 October 2015 01:09:41(UTC)

Chris, if it lasted two hours I would be very hesitant to increase the dosage yet - the last thing you need is a trip to A&E for blood-letting. Do you have a letter from the ED practitioner in case you do have to go to casualty?

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


User
Posted 10 October 2015 07:36:07(UTC)

I don't have the funky dual-chamber modern pen , I have the mix it up yourself system " Playing proper Dr's and Nurses ". I read your story with interest Lyn a few times . Based on 65% for hour and half at 15mg , then 80% at 17.5mg for just over hour and half , he said I should technically be safe to try 20 mg . I mean whats all the palaver about to only half do the job ;--))
But im totally getting your point . NO I don't have a letter , and NO I don't have the anti-dote . He said if he gave that out , then everyone would be whacking maximum dose in . Although sex is possible with pump its just very disappointing with a very weak base to the erection etc . I would be chuffed if 20mg was perfect . He said to be wary if erection lasts 3 hours , getting in the car at 4 hours , and must be treated within 6 . If I got there and they wouldn't treat me , i'd have it out pants down and scream up and down A&E till they fixed me .




If life gives you lemons , then make lemonade
 
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