He knows the science and reasoning behind it- but he's just impatient. He can't see any improvement in the last four weeks, and is jumpy. Because he feels a little better, he has started moving about more, and this is making him leak more. As you say, it is worse as the day goes on. He is still incredibly tired, and sleeps a lot. Yes to the caffeine question- decaf only- no to cranberry juice- I'd not heard of that one.

He is seeing a continence /ed nurse. I did a bit of reading and the nurse agreed he could take sildenafil. He takes 50 mg a day. Is cialis better? Should he take that instead? After we saw the nurse, I read up on vacuum pumps, and I have talked to him about this. While at this time he wouldn't use one for sex, he has decided to ask the nurse about using one daily on his own. To be honest, I think sex is very far from his mind at the moment. He can't get past the continence bit. So I imagine the answer to has he had an orgasm is no. I am trying to balance a fine line between making him interested but not making him think it's too important and putting pressure on.

I think he feels like it's the end of the world at the moment

Edited by member 18 Jan 2015 at 09:22  | Reason: Not specified

He has tinnitus, and just recently, the tv has been getting louder and louder. So I booked him an appointment to see the doctor to see if he needed his ears syringed. The gp noticed the psa in March had come back at 7.2, and took another. It came back at 9.2.

I think we are very fortunate. It's been pure luck - no symptoms. The gleason was a 9, and it had reached the boundaries but not broached the surgical margin. The surgeon said that we hadn't had much room for error. I feel very fortunate, and I think, in time, my husband will too.

Edited by member 18 Jan 2015 at 15:34  | Reason: Not specified

No steam here. Just very sad that nothing seems to have changed in the medical world in that medics ignore a high psa result ( the first result ).

With a G9 another six months or a year would possibly have brought an incurable position whereas now you have a great chance. Fortunate indeed.

In fact I think something should be raised with the GP'S practice as it is clear that your GP lacks knowledge about PCa.

It may sound a bother but the actions of that GP could be leaving men with higher than normal PSA results very vulnerable. Indeed some could die as a result of his response or should I say lack of response.

I suppose there may be a small chance that he has learned from your husbands experience.

Bri

Louise

Good advice about let nature take it's course, but stimulating to blood flow is important. I was non nerve sparring but 9 months on things are stirring below and  a warm shower with shower gel and a loving wife works wonders.  Search for "One wife's story of ED"  by Lyn, well worth a read. 

My biggest fear was incontinence but fortunately I was dry very quickly, but still do the PFE.

Bri

A PSA result of 6.9 was missed by my GP for three years, I only had another test three years later related to a trapped nerve in my shoulder. I don't think it was lack of knowledge just a lack checking results.

Thanks Chris

I have tried to find something on the Internet about the link between nerve repair and cialis, but can'tfind anything. Can anyone help?

hi Louise had my op 2 days after your oh open surgery i, i am ok at night and sitting but like him the more i do the more i leak but have decided stuff it and just get on with things and have more showers and use more pads, but it is not stopping me doing things , have noticed improvement that i had to get up about 5 times at night but down to about 2 also i can make the toilet from sitting with no leak, so things are slowly improving small steps which your oh may not notice i am doing PFE hope he improves Andy

"I also read something about treatment for stress incontinence regarding the use of pseudoephedrine, which is an over the counter decongestant, to aid in contracting smooth muscle at the exit sphincter. Does anyone have any views on this?"
Really, he is not suffering stress incontinence - as I said before, his mind needs to relearn bladder control and his pelvic floor needs some work. Tablets do not do either of these things.

Hmm.

Well once you get over the lack of control issue, once the recovery returns for most of the time, and once your urethra regains most of the control that you once had, all that remains when you leak is stress incontinence. When coughing. When sneezing. When twisting or turning.

The point is that your urethra was used to clamping down on itself for the years when you stopped peeing into a nappy until it was interfered with at the op and had a catheter inserted, it worked fine. Then suddenly your Urethra had to learn to clamp down to a new tube, the catheter. The that new tube, the Catheer, was removed and the Urethra had to learn to clamp down on to the new reduced pipe, the original urethra, again.

It is simple when you think about it. Was for me, and helped me understand.

ATB

Dave

Hi Louise & OH.

In case nobody else has mentioned this, your husband is entitled to a prescription exemption card which can be signed off by your GP and therefore charges should not apply to get your husband back to where he needs to be with the aid of medication.

To add another case and to help with the despondency that your OH is feeling, I wrote the book on impatience, just ask my OH!!

Like your feller I was diagnosed from a totally unrelated problem that I had gone to see my GP about. Luckily my GP called the same day that he was given my psa results a mere 4.1. I was diagnosed with PCa and a Gleeson 8 all in the left side of my prostate. I had robotic surgery at the end of October and I too was and can still be very despondent, good days and bad days.

I have been using Cialis and get a bit of a stirring, I have been using a vacuum pump with some reasonable results, and I was prescribed yesterday with Viagra to try. I'll let you know!! :)

One thing that really has helped me cope with the bad days is a good read of this website, the threads that some couples have shared, they really do help you see how progress can be made and how much help there is out there from men/couples going through the same thing. Have you been able to get your OH to sit and have a read rather than you giving a report back? I really do think it would benefit him in the long run. :)

He may have heard correctly although it indicates the ED nurse is a tiny bit gloomy by nature. Stats for the UK suggest that with nerves spared on only one side, 70% of men will regain erections within 1 year although the majority of these can only do so with chemical or mechanical assistance. The NHS does not publish stats for men being able to get spontaneous erections but anecdotally it is a very small number. Based on members here, 10% might be about right. Fortunately, many find that tablets or pumps or injections work.

The link you posted about the research was interesting although a very small scale project. It is NICE who say that daily Cialis (2.5mg or 5mg) is the best post-op recovery strategy but as Sildenafil is now so much cheaper than Cialis, it may be that your CCG has determined this is all men are going to be offered.

I would be really interested to find the nice guidelines to take with us next week- how can I find this please?

Interesting article Chris- I'll file it under 'future'

Louise

its a postcode lottery as to getting daily Cialis
our health authority wont give my OH daily due to cost
he found Cialis gave him headaches and wasn't much help really so now has Viagra
which helps a little but not a lot

we watched a food health program where they recommended someone with ED take
a handful of pistachio nuts
its early days but they seem to be having an effect
he has only taken them for a week but had a semi erection naturally
(about the same as he is getting with Viagra)
so is carrying on taking them will let you know if they work

I had headaches and leg aches when I started taking the daily Cialis, for a bout a week or two I think?  Made me stay awake at nights for a while and I would take a paracetamol to dull the ache.  How long did he take them for?  Did he try paracetamol for the aches?

As I understand it from my specialist and mu GP, well one of them, the other two, were at odds with the first, Cialis is for circulation and is a long term recovery aid.  Viagra is for an "event" taken up to 8 hours before anticipated sex and preferably on an empty stomach.  The Cialis has worked very well for me, I think?  The viagra does not always do the job.  But then sometimes I surprise myself and up for it and sufficiently capable without any extra help.  Need to find a well bad woman now! ;-)  

Can not understand it, but happy that it happens.  And it is happening more frequently.  Recovery is at times inexplicable and frustratingly unpredictable but welcome.  Take heart others, and persevere with any meds.

atb

Dave 

Louise,

serious comment,

You are NT thick.

When I had my RRP in May 2013 I was referred post op by the surgeon to go to my GP to have the meds, saving the budget of the Royal Berkshire at Reading, LOL.

The meds prescribed were 5mg Cialis/Tadalafil, daily, to improve general circulation around the body and the op site to aid recovery.

50mg Sildenafil/Viagra if and when I would like an erection to have sex. All good so far in theory.

When I spoke to my GP about the meds he confirmed that Cialis is for general circulation recovery. It works, my finger nails are the envy of most women!

Apparently Viagra was discovered as an erectile assistant purely by a accident. It was researched and tested as a medicine for heart problems and to assist general circulation problems, if my memory serves me right, in South America?

As the research continued with assessments of the results on the men, it was cited thstb their partners noted that the men had developed an increased sexual appetite. LOL, all these elderly men with circulatory problems were suddenly fine and demanding sex from their wives. No complaints for the women or their wives.

My opinion is not "hearsay", it is what I have experienced and am experiencing and living with. Now, my surgeon and my first GP go along with this theory and treatment regime. My last 2 GPs all have expressed surprise at my treatment regime, but nonetheless they are agreeable in support of this continuing. I am so grateful.

In summary,

The daily CIALIS works for me, has done for 19 months.

The VIAGRA has had mixed effects, but when it works it seems to work with spectral results. But, then again I get spectacular results more frequently now without meds. Deep joy.

I do hope that this helps you both.

Dave

Just as an aside, the appropriate response to any medical professional who expresses doubt or irritation about website info is to point out that the NHS information leaflet for men diagnosed with PCa recommends this forum as a source of advice and support and apparently, a number of ED nurses, PCUK mentors and doctors are members!