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What next? 50 and no erection.

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User
Posted 13 Mar 2017 at 15:00
I had brachytherapy last June. Now I find myself in a situation where I don't get erections any more. Even after taking viagra, etc? Am I finished? Depressed over it as I feel I'm too young to be in this situation.
User
Posted 02 Apr 2017 at 20:11
With you there Tinky! Let us know how you get on!!
User
Posted 10 Apr 2017 at 15:57

If you are not seeing him for 3 months , the result was prob 0.08. They will want to see if there is another rise. Normally RT is the next treatment. Some hospitals wait till psa has risen to 0.2. Others give RT when there have been 3 successive rises. A rise from 0.05 to 0.08 could just be a machine error or calibration issue so try not to worry. Anything below 0.1 is really good.

User
Posted 10 Apr 2017 at 16:53

If there were very local micromets left on the prostate bed then a year is very normal to see this level of rise. However you would still be considered to be on a fully curative path with RT to mop up this very local recurrence. Sadly my post op psa was 1.5 and up to 2.4 within 12 weeks of surgery indicating something far more sinister afoot. Easier said than done , but thoroughly enjoy the next 3 months and worry after that

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User
Posted 13 Mar 2017 at 15:09

Hello Kautostar.

Could I just ask what Brachytherapy it was that you had. ie permanent seed or High dose brachytherapy.

Life should not be over for you at 50. Have you asked if your area has an ED clinic. IF so ask your nurse specialist/GP to refer you.

Just because viagra doesn't work for you doesn't mean that nothing else will. We have a number of younger men on here who will be along to advise you. Don't despair. I'm sure they'll be able to guise you along the right path

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 13 Mar 2017 at 15:48

Are you still taking hormones?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 13 Mar 2017 at 16:19
It was the seed brachytherapy. I must see is there one of those clinics somewhere. I didn't take any hormones. Thanks.
User
Posted 13 Mar 2017 at 20:19

Your GP should be able to refer you to the local ED nurse or andrology clinic - there is much to try still, we found Levitra to be better than Viagra, and daily (low dose) cialis is often successful for men with RT/brachy induced ED. Then there are things like injections, cream or pellets that could be tried.

You should be entitled to a vacuum pump on the NHS. In many areas, men get these automatically if they have the surgery but doctors forget to offer a pump to men after RT. It is important that you maintain penile health by getting the penis engorged as often as possible - use it or lose it is a real risk, unfortunately.

The other possibility is that your ED is not physical but caused by the emotional rollercoaster of diagnosis and treatment. How are you coping generally?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 20 Mar 2017 at 04:41
Ok thanks Lyn. The 'use it or loose it' situation was one I hadn't been aware of. I didn't practice that since my treatment. My wife wouldn't be one for sex that often. I should have been practising away myself in hindsight. Now I don't even get turned on. Even while watching porn.
User
Posted 20 Mar 2017 at 04:42
Ok thanks Lyn. The 'use it or loose it' situation was one I hadn't been aware of. I didn't practice that since my treatment. My wife wouldn't be one for sex that often. I should have been practising away myself in hindsight. Now I don't even get turned on. Even while watching porn.
User
Posted 23 Mar 2017 at 02:42
I have it sorted I think. I was taking the wrong tablet. 50/100 mg of viagra, or whatever the generic name doesn't work for me. But 20mg of tadalafil (cialais) works. I'm relieved.
Thanks for the info I got on the other thread here re trying different types .
Thanks again.
User
Posted 23 Mar 2017 at 08:51

That's fantastic news - enjoy!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Mar 2017 at 02:43
I tried the 20mg tadalafil earlier this evening but it didn't work as well as a few days ago. It got me about maybe 70/80% hard. I eventually managed to get it into my wife, and climaxed, but only for she happened to be very turned on. I was disappointed it wasn't harder to make things easier and more satisfactory.
User
Posted 25 Mar 2017 at 05:46

You must try a soft jelly ring placed at the base of your penis shaft. It can seriously make a great difference and doesn't get in the way. You can buy them at the supermarket even made by Durex called pleasure rings. They last forever and are comfortable.

User
Posted 25 Mar 2017 at 11:36

Kauto, the different tablets work in different ways and external factors can make a huge difference. Generally, the more turned on you are the better the tablet will work; if you are anxious the erection will not be so good. In our house, Cialis 20mg works best about 8 hours after he takes it so he would have a tablet in the afternoon to have sex in the evening. He takes Viagra about 4 hours before sex and Levitra about an hour before (NB he doesn't take all 3 tablets on the same day though 😱 )

Cialis and Levitra works even if you have just eaten - Viagra must be taken on an empty stomach.

Trial and error will help you work out what timings work best for you - perhaps keep a note of what time you take it, how long before sex you take it and then % hardness each time?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 27 Mar 2017 at 03:12
Ok Chris, I must try one of those. Thanks.
Yes Lyn, re the different tablets. The viagra type worked excellent for me up to about 2 months ago, that definitely doesn't work any more, the Ciallis type which I had tried even before my treatment was excellent also. The Levitra, I haven't tried yet.
But for me personally it takes time to try out different things. Once a week sex was the norm in our house. Even less than that any more. Work, kids, etc., have it that way. My wife wouldn't be considered as over sexual. Although she gets satisfaction most times.
Thanks.
User
Posted 30 Mar 2017 at 12:27
What is this about use it or lose it please? My OH had a prostatectomy last year with no further treatment needed just 3 monthly PSA blood tests etc. We have never seen an oncologist, just the urologist surgeon. My OH tried Cavaject and had an adverse reaction...extreme pain, at last consultants appointment nearly three months ago, we see the consultant again in 10 days so we can ask then, but nothing else has been offered so far. So "it" has not been used for a year, we have had no advice about use it or lose it......very worried now! 😟
User
Posted 30 Mar 2017 at 15:12

Hi Tinky
In normal life a man gets many many erections during the day and especially at night whilst sleeping and on waking. It happens automatically and keeps the penile tissue and chambers healthy and elastic and functional. After surgery and other treatments this can be instantly disrupted and if nothing is done to achieve erections , the penis tissue can atrophy or weaken over time causing permanent erectile damage. Normally the first course of action is to attend ed clinic and be provided with a vacuum pump. This is placed over the penis and engorges the penis with blood giving an erection whether you want one or not. It should be used every day realistically to keep the penis healthy. It comes with rings that can trap the blood and erection enabling intercourse , or can just be used for exercise. Then also there are many drugs and injections to try including caverject. I can't use that either due to pain. It seems you must brace a visit to GP or Uro and INSIST on follow up care for ED. Such a shame this hasn't happened automatically. I really feel you need to get a pump asap. It's not too late. Best of luck

User
Posted 30 Mar 2017 at 16:40
Thank you, going to get a pump ASAP! Why oh why does this happen, why have we not been referred to ED? Why no mention of use it or lose it, it's not fair! Not that PC is fair! X
User
Posted 30 Mar 2017 at 16:47

It is quite shocking at your age that this was not explained to you or that follow-up appts haven't been arranged. It's quite tragic that men are left with life-changing side effects because of treatment , but even worse that after care isn't provided. There is a post on here called erecting the erection. If you type it into the search bar you may find it. Full of advice from many men and women seeking erection recovery

User
Posted 30 Mar 2017 at 16:53

Thanks Chris, I'll take a look.

User
Posted 30 Mar 2017 at 21:54
My OH had RP with one nerve spared in September. He has taken 20mg Cialis (8 a month) with a small amount of reaction but nothing usable! Never told about 5mg daily or about pumps. Combining tablets not mentioned either. No advice or counselling. It is the great conspiracy of silence! None of post op treatments covered financially for us so have been paying €100 monthly for the Cialis. 6 months on ...not a meg out of it without cialis and not much better with it. Any advice?? (Pump manufacturer name and where to purchase etc)
User
Posted 30 Mar 2017 at 22:58

Oh no! I feel for you Misty! Why are you wasting your money? The difference may be that you are in Ireland, of course, but I wouldn't be very happy about paying £80 a month for something that isn't working.


A number of options:
- get a pill cutter from the chemist and cut the Cialis into halves or even better - quarters. Take a half tablet every 3-4 days or a quarter tablet every 2 days.
- can you get Viagra or Levitra on prescription? If so, ask for it - you can take a Viagra on the days in between the cialis days and may have a better response. Only have him taking a Viagra or a Levitra if he is actually feeling sexy, otherwise it is a waste of a good tablet
- if not on prescription, viagra are quite cheap to buy on the internet - make sure you are buying from a reputable company
- the proper vacuum pumps as prescribed by the NHS can be bought online for about £350 - £400 on this side of the Irish Sea so perhaps not worth you funding yourself but there are some reasonable alternatives at the next level down from those


Don't give up - my OH didn't really recover erections until after the 3 year mark. Much of the success I think was down to the combination of low dose cialis daily and large dose Levitra for an 'event' - it is smaller than it used to be despite the pump (but he wasn't ever really committed to the pump) but at least it works!

Edited by member 31 Mar 2017 at 00:33  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 01 Apr 2017 at 10:07
It is rather disappointing that the messaging and follow-up on ED is so varied and inconsistent. Another postcode lottery issue. If if wasn't for this site I wouldn't have been as well prepared for my op and what to ask for. I'm 2 weeks post Op and I was prescribed 50mg daily sildenafil after my catheter was removed last week. I asked the nurse about the 5mg Cialis vs 50mg Sildenafil and she had no input. I live in East Kent and I'm assuming it's a lot cheaper to prescribe the generic.
Even though it's too early to make a call on the effectiveness, as Lynn said, the Sildenafil has no effect if not aroused. I will definitely be asking to try the other options.
In a pre-op clinic there was a mention of pumps, but nothing has been mentioned post-op. I will phone next week to ask about a pump. I have purchased a Vibrerect device to try that as well.
User
Posted 02 Apr 2017 at 09:21

I have finally got an ED appointment, 3 months post op. I was told about the risks and what is available, I didn't know I had to wait 3 months though (despite my repeated requests)! I was given 5mg Cialis daily from TWOC and bought a cheap pump in the meantime. Cheapie ones really are just that - they work, but they're hard work. Time will tell how well this particular journey goes, but I'm optimistic.

User
Posted 02 Apr 2017 at 20:09
Thanks Lyneyre. I really appreciate hearing other people's stories. We remain optimistic but very angry about how the only thing the surgeons are interested in is getting rid of the cancer and after that you are left to your own devices! Of course if the cancer wasn't gone we would really have something to complain about so everything in perspective! However I feel this is a very important issue for our marriage... the disappointment/apprehension my OH feels when nothing happens puts him off being intimate and knowing he's just doing it for me makes me feel a bit guilty....not really a positive experience right now....though we did have 8 months of a mega rekindling before operation day...nice to remember!!
User
Posted 02 Apr 2017 at 20:11
With you there Tinky! Let us know how you get on!!
User
Posted 02 Apr 2017 at 20:11
With you there Tinky! Let us know how you get on!!
User
Posted 10 Apr 2017 at 13:29
Oh well, never got to ask for referral ED clinic or any of my other questions, his PSA has gone up 😟. Unfortunately we were both too shocked to properly take in what the consultant said, other than "you may need further treatment there has been a rise in PSA results". We are not sure wether it was to 0.8 or 0.08 from <0.05 three months ago. Either way, we see him again in three months but I will ring his secretary and ask for a copy of this result in the meantime. All other things go out of your mind don't they?!
Is there any other reason that post surgery PSA would rise?? Surgery was carried out 31/05/16 all PSA results since have been <0.05.
User
Posted 10 Apr 2017 at 15:57

If you are not seeing him for 3 months , the result was prob 0.08. They will want to see if there is another rise. Normally RT is the next treatment. Some hospitals wait till psa has risen to 0.2. Others give RT when there have been 3 successive rises. A rise from 0.05 to 0.08 could just be a machine error or calibration issue so try not to worry. Anything below 0.1 is really good.

User
Posted 10 Apr 2017 at 16:01

Hi Chris,
Thanks for that, I will ask his secretary to send a copy anyway but our thinking (hoping) was that it is "only" 0.08. Still worrying though as its not quite a year since his surgery. Fingers crossed for us all! X

User
Posted 10 Apr 2017 at 16:53

If there were very local micromets left on the prostate bed then a year is very normal to see this level of rise. However you would still be considered to be on a fully curative path with RT to mop up this very local recurrence. Sadly my post op psa was 1.5 and up to 2.4 within 12 weeks of surgery indicating something far more sinister afoot. Easier said than done , but thoroughly enjoy the next 3 months and worry after that

User
Posted 20 Apr 2017 at 13:55

Thank you for that Chris, we have just had another blood test arranged by GP so at least we will have another marker, results next week! We are trying to enjoy these three months as you suggested and will worry as and when needed.....at least that is the plan! X

 
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