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ED Options - what's best?

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User

Posted 06 Feb 2015 at 16:39

I've read a lot of posts and clearly, while we have gone through the same prostate problems, we all respond differently. But what has surprised me more is what different people have received by way of advice, support and treatment.

Briefly, I've had a RP just over a year ago. My consultant said his priorities were firstly to get rid of the cancer, secondly to manage continence issues and thirdly ED. I agreed and one year on I remain with psa <0.1 and am delighted - better to live with the problems of the surgery than have the cancer spreading. But those other issues are there and I want to deal with them.

I still have some incontinence. I can get through some days without a pad but not yet at night, so just keep doing the exercises and hope. Is there anything else one can do?

As to ED, I have made no real progress and am not sure what to do

I lost one nerve bundle in the surgery and a pump was recommended to help blood flow etc. So I obtained a pump, although my GP refused to prescribe it. She did however give me daily 5mg Cialis, again to improve blood flow.

I have a great wife who is supporting me but I find the pump allows erections for a short time only and reduces sensitivity. The Cialis may be improving my blood flow but not to the extent of addressing ED. The ED nurse has given me a cream to try which was useless and I now have Caverjet which works to a degree and with the nurse's agreement I am experimenting with the dosage.

So, is this it I wonder. The nurse does not recommend the use of Sildenafil, especially with the Cialis, but other posts seem to suggest others have had both prescribed. I have also read of MUSE but have never of it (am I being dim?). I am now not sure what I can reasonably expect to happen or by when.

Does anyone know if the blood vessels and nerves will grow and reconnect? My consultant says only maybe and its early days. Also can anyone elaborate on any drugs or other treatments that they know of that might help please.

User

Posted 06 Feb 2015 at 20:10

Briefly, I've had a RP just over a year ago. My consultant said his priorities were firstly to get rid of the cancer, secondly to manage continence issues and thirdly ED.

A splendid aim and all in the correct oder IMHO.

Regarding your incontinence - I can not think what else you can or should do. I had RRP May 2013, PFE did not work for me, so I have not done anything like that for 17 months and I continue to improve, don't ask how or why? It just gets better as time goes by. Have you not had any improvement as time goes by? Sometimes the improvements are so gradual that they become apparent all of a sudden.

As for ED, and your apparent belief on lack of real progress, what progress have you made? Are you any better than immediately post-op? If so that is progress, may not feel real or dramatic enough but you are on a long journey, not a sprint. Slowly slowly poppy uppy! Hopefully in good time. Believe me, that is the new way for us in this boat. A supportive pertinent IS the single most important factor in all of this recovery. Believe me, you are so very fortunate to have your partner on board and helping and assisting you. She is more valuable and important to you than any pump or pill.

So, what can you do that I know could work for you? What worked for me? Masturbate as often as you can, every opportunity, as often in a day as you can. Even if you have then massage your bits, often frequently, as often as you can. As I understand things this is all about stimulating blood flow to the area.

Intimacy with your other half and leaking issues, LOL been there, my X would not come anywhere near me after I dribbled less than a T-spoonful 5 months after my op. That was the end of our sexual relationship, actually end of relationship. No matter. You are more fortunate than I was.

So leaking issues , get intimate in the bath tub or the shower. Sorted. Or, get a towel besdie themed JIC. FCS it is only a bit of wee. Not likely to kill anyone.

As for recovery, this can take up to 2 years and then you will still propbably improve for more, so have faith, you are ONLY a year down the line.

The pills do different things for different men. And the dosage can be played with. There is talk about a priapism if you take too much too soon or mix meds. We live in hope!!

I have experimented with Cialis and Sildenafil with mixed results. One Cialis and 3 x Sildenafil in the space of one hour, interesting result that did not cause me any problems. I had tried 1 x Cialis and 1 x Sildenafil first, then 1 x Cialis and 2 x Sildenafil at other times so I knew that I would probably not come to harm, or hold a tent up.

Good luck, be patient, work at to with your partner, and all will be well.

Dave

User

Posted 06 Feb 2015 at 21:29

Wightman

Similar principles in the surgery to you and Dave, my nerves were supposedly not sparred but I have had some movement and partial erections. Six week post op I was prescribed Sildenafil and three months later the pump by my ED consultant, my surgeon said the Sildenafil would not work as there were no nerves. I saw my surgeon for a review this week, after discussing movement and partial erections he explained that although the nerves were not deliberately sparred some may have survived, so he has now prescribed 100 mg of Sildenafil to be taken daily.

The pump worked well and did the job but a bit of a passion killer. I was advised to stop using the pump until my stricture was sorted, part of the stricture treatment was to insert a 4.7mm diameter catheter into the penis three times a week. Having got used to that, the idea of the muse pellets did not seem as daunting but my ED consultant will be away for several weeks. So that will have to wait. What cream were you given ? Following advice on here I have started eating pistachios nuts it might be a conincedense or psychological but they taste nice anyway. ED consultant advised to keep it exercised.

Similar to Dave re leakage, but in a warm shower with some shower gel and a loving OH may get a partial result.

I was one of the lucky ones, I was dry within days, I still have the odd small accident, talking to my urology nurse about frequency she said you still need to do the PFEs . I did my PFEs religiously for four months pre op and it's never too late to start.

Thanks Chris

User

Posted 07 Feb 2015 at 02:05

Hi Wightman,

You are quite unusual I think - they generally say that you won't start to get back day time continence until after you are dry at night and so when the incontinence goes on for a long time, the advice is not to lose hope if you are controlling the bladder at night. So what exactly do you mean by not being able to get through the night? Are you just having to get up frequently, are you wetting the bed or are you wearing pads in bed which are wet the next morning? This could be learned behaviour - your psyche is allowing you to 'let go' because you are wearing a pad - or perhaps you are sleeping too deeply for the triggers to wake you up? It is unlikely to be a physical problem with your bladder control as you are pretty much able to hold it when vertical. Have you been referred to an incontinence clinic yet?

As for the ED, are you using the pump every day without the rings for exercise even if you don't have sex? It is important to engorge the penis regularly to prevent too much shrinkage as this is permanent damage. Have you learnt to have orgasms without an erection - I see Chris has referred to this already (but Chris, KY jelly would be rather healthier than showergel). A few men are able to get Cialis and Viagra at the same time but usually only under careful monitoring by a specialist as it can be quite dangerous and you mustn't have both within the same 24 hours (Dave was an exception and a law unto himself but fortunately for all, he survived). Muse is a pellet form of Caverject so if the injections aren't working brilliantly, Muse is unlikely to shake your knees but may be worth trying. Again, I hope you were advised not to take Cialis the same day as the Caverject? When you say the Caverject works to a degree, what do you mean? You get an erection that lasts only a short time, you don't really get an erection or it becomes erect but not very big?

Removed nerves do not regrow but damaged or bruised nerves can repair themselves - they say the biggest improvement is usually between 12-24 months post op and wherever you are 2 years after RP is pretty much as good as it is going to get - my OH disproved that though as his situation changed dramatically in the period 3 to 4 years after treatment. There were many times when he nearly gave up hope but it turned out okay-ish in the end.

Edited by member 07 Feb 2015 at 02:07 | Reason: Not specified

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

User

Posted 07 Feb 2015 at 09:18

Other way round for me. Completely dry at night but a tiny amount of leakage during the day, mostly in the evening. I'm talking half a thimble full but it's enough to mean I would rather wear a shield than not. It's better some days than others actually.

On the ED front I'm taking Cialis 5mg, one a day. I have some 20mg Cialis and have tried one twice but both times they made me feel quite ill. 9 months after my RP I'm using the pump with unusable results but not I'm afraid every day. The strange thing for me is that I simply cannot make it work when I'm lying down. I can get a result standing up, less so sitting and not at all lying down. I've asked my ED nurse but she didn't seem to know why. Any ideas welcome.

Because I'm only 9 months post op I'm not too worried yet because I know it will take time. As time goes by though I intend to ask for further help and try different medications. I was offered Caverject and Muse but I didn't accept them., perhaps later as said.

Apart from LynEyre's husband I can't remember hearing from anyone who has come through the ED phase following RP and is now fully functioning 2 or 3 years later. Having some good news would certainly make me feel better.

Steve

User

Posted 02 Mar 2015 at 13:18

Good afternoon

You may already know that we’ve been doing some work on erectile dysfunction in the campaigns team at Prostate Cancer UK. From research we’ve done we know that men often find it difficult to get treatment for problems getting or maintaining an erection after prostate cancer treatment, and we’re trying to address this. One of the ways we are doing this is by making sure health professionals know what they should be doing to support men. We’ve worked with experts to put together quick guides for health professionals and we’re now promoting them. You can see the guides here: http://prostatecanceruk.org/edsurgery & http://prostatecanceruk.org/edradiotherapy.

As part of our promotions plan, we’d like to hear from people who have personal experience of erectile dysfunction after treatment, and would be happy to share their experience of trying to get support. This will really help show health professionals why this is so important.

This would initially be for an online blog aimed at encouraging health professionals to order the guides. If you’d be interested in having a chat about being involved, please get in touch on lizzie.flew@prostatecanceruk.org.

Thank you for your support.

Lizzie

Edited by member 18 Mar 2015 at 12:34 | Reason: Not specified

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