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Urinary incontinence

User
Posted 17 Jan 2015 at 23:37
My husband is 58, and was diagnosed with a Gleason 5+4 cancer at the end of October. He had robotic prostatectomy on 1st dec, with nerve sparing on one side, catheter out on 19th December. he has moderate incontinence- mainly dry at night, but leaking in the day with any sort of movement. He is becoming quite down about this- I think it's the uncertainty that's doing it for him. He says it's not improving at all. And the thought of being impotent is not helping either. Has anyone any advice on how to try and keep him positive.? He's normally an incredibly positive person. What experience do other people have of how long it took to regain continence, especially if you were around the same stage at 7 weeks.

I really would appreciate any input.

User
Posted 18 Jan 2015 at 03:18

Oh dear - I am always saddened to read posts like this and wonder whether it is about men not understanding the implications of their treatment or specialists glossing over the things they think their patient won't want to hear.

You can reassure your OH that he is making good progress in comparison to many. The NHS - who make surgeons report their success rates these days - regard success after RP as using 1 pad or less per day by 12 months post-op. Some men are fortunate to be continent the minute their catheter is removed but these are by far the minority - you will find plenty of conversations on this forum about men regaining proper continence around the 3 - 6 month mark or later. Some never regain it but there is no need to freak him out with that nugget right now as the fact that he is dry at night suggests that he will eventually be dry during the day as well. Men who are left with permanent problems tend to have no control night or day.

Was it explained to him why he might leak? When they removed the prostate, they had to cut his urethra, remove a section along with the prostate and then stitch the cut ends of the urethra back together. This makes the urethra shorter (which may also make his penis shorter) by about the same length as his prostate was. Often, the valve that starts and stops urine flow is in the section that has been cut so it has to be replaced and stitched in near the new join which means that after the catheter is removed, the urethra can be a bit like a sieve - urine leaks through the holes until they heal and he learns to control the valve again. Controlling urine flow is not a reflex or automatic body action so the relearning after surgery is similar to the process that a toddler goes through during potty training - it has to be concentrated on for quite a long time before it stops being an effort for the brain to work out which bit of the body needs to be flexed or relaxed. It is also very tiring for the brain having to concentrate on this so you probably find that the leaking gets worse as the day goes on.

There is nothing he can do to solve the sieve issue, just time for the wounds to heal, but do you know that he is doing his pelvic floor exercises a) properly and b) often enough? Also, is he drinking cranberry juice to soothe the bladder and avoiding caffeine?

As far as impotence goes, has he had his first orgasm yet? That tends to cheer a bloke up, the realisation that orgasm can happen without an erection. Has he been referred to an ED clinic or andrology clinic by his surgeon or GP? And has he been prescribed Cialis (often a small dose of 2.5mg or 5mg to be taken every day) not to get an erection at this stage but to increase blood flow to the nerve bundles and help with repair. It is also important that he stimulates the penis regularly during the day - this increases oxygen to the penis to prevent atrophy (the technical term for permanent damage to the penis which makes it get smaller and makes full erections less likely in the future). At some point in the near future, he needs to ask either his ED nurse or GP to prescribe a vacuum pump but while he is still leaking a lot he may not be very motivated.

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

User
Posted 18 Jan 2015 at 09:30

Hello Louise and welcome.
Very wise words from Lyn as usual. Men are a funny breed, they listen but they don't hear.

To some extent mine was the same. I had all the info but he wasn't interested and like your husband John's was discovered when he complained of a bad back.

We didn't go the surgery route so I can't comment but even though, for us, our treatment was simpler, the after affects take some getting used to.

Personally, I was under the impression that sildenadfil was used more for gaining an erection and Cialis for repair for those men who have had surgery as it helps to repair the damage caused.
I expect Lyn or somebody will tell you about that..

What is important now is that you look after you! It can be very wearing dealing with a husband who wants an instant result and is impatient. As you say there is a very fine line between wanting to help and making it look like you are pressuring him.

My husband was one of those for whom incontinence was a big no no. When it came to it though he accepted it as part of the ongoing process of healing.

If your other half is normally a very positive person then these results will have come as a big shock to him.
How would he feel about seeing his GP for help with mild depression since it's possible that his sleeping isn't just confined to being tired.

Love him, let you know you love him no matter what and point out that you are on this journey together but it would be easier for both of you if you talk things over. The more he bottles it up, the bigger his demons will become. He needs to talk his fears over with somebody to get perspective on it.

Hopefully, there will be many members on here at some stage to provide that support because they too have been there.

Best Wishes Sandra

Edited by member 18 Jan 2015 at 09:31  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 18 Jan 2015 at 10:43

I have been there. I think it took about three months for me to regain full continence. As Lyn says make sure he is doing the pelvic floor exercises correctly and frequently.

Regarding the cialis v sildanafil I would speak to the GP about getting a daily dose of cialis initially. This aids the blood circulation around the nerves which may lead to recovery of function. Sildanafil is Viagra that is used to aid an erection but he needs to help the nerves repair first. I also didn't think Sildanafil was supposed to be used as a daily med but more as a as and when.

You and your OH have been through a lot from going for an ear syringe that has ended up with his dx and a major operation. It is going to take time to adjust for both of you.

I'm sorry but I have to ask how did the ear syringe lead to his dx.

Keep asking questions

Bri

User
Posted 18 Jan 2015 at 11:35

Hello Louise,

Like your husband, I originally saw my GP for something completely unrelated to PCa ( see my profile )

When my catheter was removed I ( like many others ) had no control whatsoever ....

Although it was explained to me that there would be a good chance that I would be incontinent to some degree for a while after surgery, the reality of this did not really register until after the event.

For the first few months I made very little progress and was using between 6 to 8 pads a day ( very expensive! )....

Slowly but surely things started to improve gradually after about 3 to 4 months post op.

I am an active person and found life very restricting having to worry about pads filling up when out and about so I did get despondent like your hubby.
Reading some stories on here reminds me of how lucky I was compared with some less fortunate people.

I am now 7 months post op and still need to use 2 pads daily on average, but am hopeful that I will improve more over the next 6 months or so....

I've found that using a 'Conveen Sheath ' connected to  a 'Conveen Active Thigh Bag' enables me to have good long walks with the dogs without me having to worry about pads etc........ I managed to get these items on prescription after talking  with my consultant at my last review.

I also purchased a vacuum pump to help with ED issues and help prevent penile atrophy.

Every person will have their own recovery times and so it's not always good to compare progress with others. 

It's very early days yet, but I'm sure hubby will improve over time with regular pelvic floor exercises and a little perseverance.

Best Wishes

Luther

User
Posted 18 Jan 2015 at 11:53

Louise1969 he is still very very early on in his recovery mode.

Every man receives at their own rate, and this will not as fast as they would like to, even those that recover within a week, they will want to have recovered in less than a week.

And every man will manage his own recovery to enable rest and peace of mind etc. That night involve taking what may appear to be a step backwards every now and then, such as wearing a conveen at night or during the day or when out and about.

A vacuum pump is a good thing, in due course, but a bit damp to use if leaking a lot unless you empty your bladder as far as possible before using it. And even then imagine that you keep everything tense and tight and sealed and then you whack a pump on your bits causing the flesh to expand and then all that tension and seal is broken and moisture egress, leaking.

He is doing much better than I was at the time he is now post op. I am 57, diagnosed at 55 and am now dry apart from when I am on a treadmill at the gym, then I leak.

He is doing well, just needs a bit of a reality check and some smell the coffee management of his expectations to make them more realistic.

Him coming to terms with his situation will make it more bearable for him to live with it. Been there, regularly had the soggy pants! So I now what it is like.

atb

Dave

User
Posted 18 Jan 2015 at 12:44

As said above, research suggests that Viagra (sildenafil) does nothing to aid nerve repair.

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

User
Posted 18 Jan 2015 at 14:51

Louise

I am 9 months post op, and comfortably on one pad per day, hoping to be dry by June, but I feel I could live as I am if it doesn't improve.

Re erections, I have a thread in which you'll see there are signs of life which only started a month ago. With my wife currently having a ch est infection, I've not had a tablet for a couple of weeks, but still try the pump every 2 days to keep the old man exercised.


I am sure things will improve. Keep believing, but also try to stay relaxed. Nature will take care of itself and your OH will improve in both departments in time.

Paul

Stay Calm And Carry On.
User
Posted 20 Jan 2015 at 20:44
I want to say a massive thank you to everyone who has posted on this conversation. I have not used an online forum before, and, not that I wish this on anyone, but it's nice to know people are in the same boat and having similar experiences.

I have passed on all information on here to my OH (I've only just worked out what this means!!!) and we've made some decisions based on the info. He's decided to get a vacuum pump and give it a bash (see what I did there...?)

I have spoken to the ED nurse today, who tells me that there is no difference in the action of sildenafil and cialis - they both do the same job. I haven't managed to find anything which contradicts this. Does anyone have any links to literature saying cialis is the drug of choice?

Thank you to Trevor- I didn't know about the prescription thing- I shall do that tomorrow.

The OH seems, if not happier, then managing to stay cheerful. I think the ED nurse telling him he only had a 10% chance of regaining erections sent him into despair. Of course, she didn't actually say this, but this is what he heard. But every positive comment I get from here, I pass on to him.

It's making me feel better too! πŸ˜„

User
Posted 21 Jan 2015 at 12:00

yes
hubby takes some to work and nibbles on them during day
they are high in protein so if they don't have desired effect at least they are good for you

User
Posted 22 Jan 2015 at 18:29
I bought four weeks supply of pistachio nuts today....

I still can't find any links to official articles which say cialis is better than Viagra for nerve repair. Our ed nurse is insistent that it makes no difference, they both do the same job. The NICE guidelines seem to say that the only difference is the time the drug acts for, unless I sm looking in the wrong place?

Where did your information come from about cialis being better?

User
Posted 22 Jan 2015 at 20:42

Originally Posted by: Online Community Member
I bought four weeks supply of pistachio nuts today....

I still can't find any links to official articles which say cialis is better than Viagra for nerve repair. Our ed nurse is insistent that it makes no difference, they both do the same job. The NICE guidelines seem to say that the only difference is the time the drug acts for, unless I sm looking in the wrong place?

Where did your information come from about cialis being better?

 

Louise, 

I would be very wary about the boudoir department the next few weeks.  And at other times if you notice that there are abandoned "shells" appearing?

Not sure but if a gentleman munching nuts approaches you with a lascivious grin about their visage, run RUN!**

 

ATB

dave

 

** but not too far and not too fast ;-)

 

My ex was very attentive and conscientious when chewing on my nuts.  She was very attentive, thorough and persistent and very very effective.  She only stopped when the packet was empty! :-0

Show Most Thanked Posts
User
Posted 18 Jan 2015 at 03:18

Oh dear - I am always saddened to read posts like this and wonder whether it is about men not understanding the implications of their treatment or specialists glossing over the things they think their patient won't want to hear.

You can reassure your OH that he is making good progress in comparison to many. The NHS - who make surgeons report their success rates these days - regard success after RP as using 1 pad or less per day by 12 months post-op. Some men are fortunate to be continent the minute their catheter is removed but these are by far the minority - you will find plenty of conversations on this forum about men regaining proper continence around the 3 - 6 month mark or later. Some never regain it but there is no need to freak him out with that nugget right now as the fact that he is dry at night suggests that he will eventually be dry during the day as well. Men who are left with permanent problems tend to have no control night or day.

Was it explained to him why he might leak? When they removed the prostate, they had to cut his urethra, remove a section along with the prostate and then stitch the cut ends of the urethra back together. This makes the urethra shorter (which may also make his penis shorter) by about the same length as his prostate was. Often, the valve that starts and stops urine flow is in the section that has been cut so it has to be replaced and stitched in near the new join which means that after the catheter is removed, the urethra can be a bit like a sieve - urine leaks through the holes until they heal and he learns to control the valve again. Controlling urine flow is not a reflex or automatic body action so the relearning after surgery is similar to the process that a toddler goes through during potty training - it has to be concentrated on for quite a long time before it stops being an effort for the brain to work out which bit of the body needs to be flexed or relaxed. It is also very tiring for the brain having to concentrate on this so you probably find that the leaking gets worse as the day goes on.

There is nothing he can do to solve the sieve issue, just time for the wounds to heal, but do you know that he is doing his pelvic floor exercises a) properly and b) often enough? Also, is he drinking cranberry juice to soothe the bladder and avoiding caffeine?

As far as impotence goes, has he had his first orgasm yet? That tends to cheer a bloke up, the realisation that orgasm can happen without an erection. Has he been referred to an ED clinic or andrology clinic by his surgeon or GP? And has he been prescribed Cialis (often a small dose of 2.5mg or 5mg to be taken every day) not to get an erection at this stage but to increase blood flow to the nerve bundles and help with repair. It is also important that he stimulates the penis regularly during the day - this increases oxygen to the penis to prevent atrophy (the technical term for permanent damage to the penis which makes it get smaller and makes full erections less likely in the future). At some point in the near future, he needs to ask either his ED nurse or GP to prescribe a vacuum pump but while he is still leaking a lot he may not be very motivated.

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

User
Posted 18 Jan 2015 at 09:11
Thank you for your reply. Certainly we were told about the after effects- I really do think he thought they wouldn't apply to him! I certainly don't think they sunk in for him. He doesn't do illness. His cancer diagnosis came completely out of the blue- he went to the gp to have his ears syringed!

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

User
Posted 18 Jan 2015 at 09:30

Hello Louise and welcome.
Very wise words from Lyn as usual. Men are a funny breed, they listen but they don't hear.

To some extent mine was the same. I had all the info but he wasn't interested and like your husband John's was discovered when he complained of a bad back.

We didn't go the surgery route so I can't comment but even though, for us, our treatment was simpler, the after affects take some getting used to.

Personally, I was under the impression that sildenadfil was used more for gaining an erection and Cialis for repair for those men who have had surgery as it helps to repair the damage caused.
I expect Lyn or somebody will tell you about that..

What is important now is that you look after you! It can be very wearing dealing with a husband who wants an instant result and is impatient. As you say there is a very fine line between wanting to help and making it look like you are pressuring him.

My husband was one of those for whom incontinence was a big no no. When it came to it though he accepted it as part of the ongoing process of healing.

If your other half is normally a very positive person then these results will have come as a big shock to him.
How would he feel about seeing his GP for help with mild depression since it's possible that his sleeping isn't just confined to being tired.

Love him, let you know you love him no matter what and point out that you are on this journey together but it would be easier for both of you if you talk things over. The more he bottles it up, the bigger his demons will become. He needs to talk his fears over with somebody to get perspective on it.

Hopefully, there will be many members on here at some stage to provide that support because they too have been there.

Best Wishes Sandra

Edited by member 18 Jan 2015 at 09:31  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 18 Jan 2015 at 10:43

I have been there. I think it took about three months for me to regain full continence. As Lyn says make sure he is doing the pelvic floor exercises correctly and frequently.

Regarding the cialis v sildanafil I would speak to the GP about getting a daily dose of cialis initially. This aids the blood circulation around the nerves which may lead to recovery of function. Sildanafil is Viagra that is used to aid an erection but he needs to help the nerves repair first. I also didn't think Sildanafil was supposed to be used as a daily med but more as a as and when.

You and your OH have been through a lot from going for an ear syringe that has ended up with his dx and a major operation. It is going to take time to adjust for both of you.

I'm sorry but I have to ask how did the ear syringe lead to his dx.

Keep asking questions

Bri

User
Posted 18 Jan 2015 at 11:35

Hello Louise,

Like your husband, I originally saw my GP for something completely unrelated to PCa ( see my profile )

When my catheter was removed I ( like many others ) had no control whatsoever ....

Although it was explained to me that there would be a good chance that I would be incontinent to some degree for a while after surgery, the reality of this did not really register until after the event.

For the first few months I made very little progress and was using between 6 to 8 pads a day ( very expensive! )....

Slowly but surely things started to improve gradually after about 3 to 4 months post op.

I am an active person and found life very restricting having to worry about pads filling up when out and about so I did get despondent like your hubby.
Reading some stories on here reminds me of how lucky I was compared with some less fortunate people.

I am now 7 months post op and still need to use 2 pads daily on average, but am hopeful that I will improve more over the next 6 months or so....

I've found that using a 'Conveen Sheath ' connected to  a 'Conveen Active Thigh Bag' enables me to have good long walks with the dogs without me having to worry about pads etc........ I managed to get these items on prescription after talking  with my consultant at my last review.

I also purchased a vacuum pump to help with ED issues and help prevent penile atrophy.

Every person will have their own recovery times and so it's not always good to compare progress with others. 

It's very early days yet, but I'm sure hubby will improve over time with regular pelvic floor exercises and a little perseverance.

Best Wishes

Luther

User
Posted 18 Jan 2015 at 11:53

Louise1969 he is still very very early on in his recovery mode.

Every man receives at their own rate, and this will not as fast as they would like to, even those that recover within a week, they will want to have recovered in less than a week.

And every man will manage his own recovery to enable rest and peace of mind etc. That night involve taking what may appear to be a step backwards every now and then, such as wearing a conveen at night or during the day or when out and about.

A vacuum pump is a good thing, in due course, but a bit damp to use if leaking a lot unless you empty your bladder as far as possible before using it. And even then imagine that you keep everything tense and tight and sealed and then you whack a pump on your bits causing the flesh to expand and then all that tension and seal is broken and moisture egress, leaking.

He is doing much better than I was at the time he is now post op. I am 57, diagnosed at 55 and am now dry apart from when I am on a treadmill at the gym, then I leak.

He is doing well, just needs a bit of a reality check and some smell the coffee management of his expectations to make them more realistic.

Him coming to terms with his situation will make it more bearable for him to live with it. Been there, regularly had the soggy pants! So I now what it is like.

atb

Dave

User
Posted 18 Jan 2015 at 12:40
Originally Posted by: Online Community Member

You and your OH have been through a lot from going for an ear syringe that has ended up with his dx and a major operation.

Bri

Yes, but he can hear a pin drop now!

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

User
Posted 18 Jan 2015 at 12:44

As said above, research suggests that Viagra (sildenafil) does nothing to aid nerve repair.

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

User
Posted 18 Jan 2015 at 13:48
Thank you everyone for your kind words. I now have an action list as follows;

Buy cranberry juice

Speak to nurse about whether sildenafil is appropriate, or whether cialis is better. If someone could point me in the direction of something on the Internet to back this up, that would be great. I think she said cialis was more expensive.

Speak to nurse about benefits of vacuum pump.

In your varied experiences, at almost eight weeks post op, what should he be taking and doing to help him get the quickest and best outcome possible? i did do some research, which is why he is taking sildenafil, but it's difficult to tell what is accurate. I would really appreciate a checklist we can take to the nurse next week.

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?

Thank you everyone, it really helps x

User
Posted 18 Jan 2015 at 14:51

Louise

I am 9 months post op, and comfortably on one pad per day, hoping to be dry by June, but I feel I could live as I am if it doesn't improve.

Re erections, I have a thread in which you'll see there are signs of life which only started a month ago. With my wife currently having a ch est infection, I've not had a tablet for a couple of weeks, but still try the pump every 2 days to keep the old man exercised.


I am sure things will improve. Keep believing, but also try to stay relaxed. Nature will take care of itself and your OH will improve in both departments in time.

Paul

Stay Calm And Carry On.
User
Posted 18 Jan 2015 at 15:23

"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.

Edited by member 18 Jan 2015 at 15:25  | Reason: Not specified

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

User
Posted 18 Jan 2015 at 15:33
Can't work out how to get the quote in, but to Brian who asked about how the ear syringing led to the diagnosis- it didn't really. But my husband has to be made an appointment if he needs to go to the GP- he doesn't go unless he's in real trouble. Earlier in the year, he had a call for a well man check. I booked it for him, and he went and had this done. Because my father has prostate cancer (15 years), I told him to ask for a psa test. He heard nothing back.

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

User
Posted 18 Jan 2015 at 18:26

Well Louise I am sat hear with steam coming out of my ears as it is yet another example of abnormal results not being acted upon ie from the PSA test in March.

Thank goodness you got him to go and do something about his ears.

Has he had his post op PSA test yet

Bri

User
Posted 18 Jan 2015 at 19:15

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.

User
Posted 18 Jan 2015 at 19:21
Hi bri

He had a psa on 31st dec of less than 0.1. That was as accurate as the gp could get!

It was a little annoying at the time- I knew a bit about it as my dad was diagnosed in 2001, and I would have known enough to ensure he got a retest. But as you say, fortunate. In fact, after the second test, the gp actually said he wasn't too bothered, and would we like a 'belt and Braces' check, or just a retest in a few months. My husband would have probably opted for the wait and seeaporoach if I hadn't been there.

But I must say, from the second blood test (29th sep) to seeing urologist (7 October) to diagnosis of the biopsy (22 October) to surgery (1st dec) was quick, and the service we have had from our local hospital (Derby royal) has been fantastic.

And yes rob, the consultant did say when he came back with the pathology results that in another six months it would have probably been a different story. I feel far too grateful for our fortune to be angry, and I'm sure my husband will too when he drys up a bit and looks back in what could have been

User
Posted 18 Jan 2015 at 19:25
Ok thank you Lyn. I'm aware that I don't know as much as I should, but am just trying to find as many options as possible. He's had a better day today- I don't think he's as down in the dumps. At any rate, he's trying hard not to be!
User
Posted 18 Jan 2015 at 19:42
"

Β In fact, after the second test, the gp actually said he wasn't too bothered, and would we like a 'belt and Braces' check, or just a retest in a few months. My husband would have probably opted for the wait and see approach"

More steam

Bri

Edited by member 18 Jan 2015 at 19:44  | Reason: Not specified

User
Posted 18 Jan 2015 at 19:51

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

User
Posted 18 Jan 2015 at 20:47

I had 2 PSA's 2 years apart and jumped from about 5 to 7 when I was referred. It is difficult to understand why your OH wasn't referred after the original result!

Stay Calm And Carry On.
User
Posted 18 Jan 2015 at 20:57

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

User
Posted 18 Jan 2015 at 21:54

I think the gp for Louise ' s OH showed a lack of knowledge as even with the 2nd test he was prepared to leave it for a few months.

Bri

User
Posted 19 Jan 2015 at 07:38
Indeed. The gp did seem more than happy to give us a daily dose of sildenafil on nhs prescription, which we thought we'd have to pay for. He's going out of his way to help now! Let's see what he says when we go back for cialis instead - I think it's more expensive.

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

User
Posted 19 Jan 2015 at 07:55
http://www.dailymail.co.uk/health/article-178912/Viagra-boost-cancer.html

Hello Lyn

I realise this is not the most scientific of sources, but this is the article, among others, that made us speak to the nurse about taking Viagra. Does cialis do the same thing? Or is it better? I can't find any links to show the nurse for the cialis. As it is much more expensive, I can't see them giving this instead of sildenafil img there is no difference in benefit

Thanks for your input

User
Posted 19 Jan 2015 at 10:57

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

User
Posted 19 Jan 2015 at 18:24
Hi Louise

I am in a similar position had my op on the 8th Dec and the catheter removed 22ed Dec incontinent during day but dryish at night. Not really had any follow up info as only seen the surgeons junior briefly morning after the op so was still out of it a bit and not seeing the consultant until the 9th Feb which is 8 weeks post op. I have seen my GP couple of times complaining of stinging took three weeks to find I had Proteus urine infection which wouldn't of helped the incontinence. Also nothing about cailis or pumps, I get most info from this excellent forum.

Malcolm

User
Posted 19 Jan 2015 at 23:24

"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

User
Posted 19 Jan 2015 at 23:59

I find the leakage is worse for me when I squat or sit with my legs apart. I presume this opens up the tubing. Playing golf doesn't seem to lead to any excessive leakage now.

Paul

Stay Calm And Carry On.
User
Posted 20 Jan 2015 at 11:02

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. :)

 

  

User
Posted 20 Jan 2015 at 12:58

 This is how my consultant explained things to me;

Before surgery I had 2 sphincter muscles to control urine flow........


......One internal sphincter muscle which was / is situated near the base of the prostate and bladder neck.

This was either partly removed along with the prostate or possibly damaged / disturbed  during surgery and reconstruction of the urethra in order to remove all of the prostate and associated tumour(s).....

The second is an external sphincter muscle which is located  and works in conjunction with the pelvic floor muscles ....

This muscle was  secondary in urine control before surgery....... After surgery it now needs to be stronger to in effect do the extra work of the missing / damaged internal sphincter muscle....hence pelvic floor exercises may help urine control by strengthening this muscle and aid continence.... although there is no guarantee full continence will be achieved if the internal sphincter has been too badly damaged...

Pelvic floor exercises may well help in regaining continence quicker, but the overall outcome will be dependent on how  much trauma the internal sphincter muscle has endured during surgery.

Stress incontinence occurs when movement increases pressure in the bladder and the sphincter muscle is not strong enough or efficient enough  to hold back the urine?

Maybe I've misunderstood my consultant's explanation?

Best Wishes

Luther

 

Edited by member 20 Jan 2015 at 14:13  | Reason: Not specified

User
Posted 20 Jan 2015 at 20:33
Luther- sounds very like our consultant's explanation. It may even be the same one, looking at your profile picture. Royal Derby?
User
Posted 20 Jan 2015 at 20:44
I want to say a massive thank you to everyone who has posted on this conversation. I have not used an online forum before, and, not that I wish this on anyone, but it's nice to know people are in the same boat and having similar experiences.

I have passed on all information on here to my OH (I've only just worked out what this means!!!) and we've made some decisions based on the info. He's decided to get a vacuum pump and give it a bash (see what I did there...?)

I have spoken to the ED nurse today, who tells me that there is no difference in the action of sildenafil and cialis - they both do the same job. I haven't managed to find anything which contradicts this. Does anyone have any links to literature saying cialis is the drug of choice?

Thank you to Trevor- I didn't know about the prescription thing- I shall do that tomorrow.

The OH seems, if not happier, then managing to stay cheerful. I think the ED nurse telling him he only had a 10% chance of regaining erections sent him into despair. Of course, she didn't actually say this, but this is what he heard. But every positive comment I get from here, I pass on to him.

It's making me feel better too! πŸ˜„

User
Posted 20 Jan 2015 at 21:40

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.

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

User
Posted 20 Jan 2015 at 22:13

 

One for the future perhaps ?

 

Injections of tummy fat halt embarrassing leaks: Jabs can reduce incontinence in men following prostate surgery, say researchers

 

  • Scientists are using      stem cells extracted from abdominal fat 
  • Injections reduced      leakage by up to 60 per cent
  • Treatment involves      taking fat from the tummy using liposuction
  • Extracted stem cells      from the fat are then injected into the patient

 

http://www.dailymail.co.uk/health/article-2917231/Injections-tummy-fat-halt-embarrassing-leaks-Jabs-reduce-incontinence-men-following-prostate-surgery-say-researchers.html

 

Thanks Chris

 

Edited by member 21 Jan 2015 at 12:37  | Reason: Not specified

User
Posted 20 Jan 2015 at 22:45
Thanks for that Lyn. She did actually say that 'without medication or some artificial help only 10% of men can get erections after surgery' he just heard 10%!

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

User
Posted 21 Jan 2015 at 08:14
Hello Lyn

I have searched and can't find anything to say cialis is better or recommended, only to say that it lasts longer. The only nice guidelines I can find say the prescription choice should be down to personal preference.

If he should be having cialis, then I need to get the ed nurse to prescribe it. To do this, I think I may need to prove the causal link- can you tell me where you read this please? I've tried searching for everything I can think of, but it just brings up the same guidelines that either of the three can be used

Thank you

User
Posted 21 Jan 2015 at 08:25

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

User
Posted 21 Jan 2015 at 10:18

Hi mb5244.
Was that a handful of pistachio nuts every day?

We can't control the winds - but we can adjust our sails
User
Posted 21 Jan 2015 at 12:00

yes
hubby takes some to work and nibbles on them during day
they are high in protein so if they don't have desired effect at least they are good for you

User
Posted 21 Jan 2015 at 21:47
I think he'll try anything!

User
Posted 22 Jan 2015 at 05:29

Originally Posted by: Online Community Member

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 

User
Posted 22 Jan 2015 at 11:03

our health authority will not prescribe daily Cialis
all they will allow is 4 x 20 mg tablets a month
OH tried them for 4 months even taking a paracetamol at the same time as Cialis didn't help
and since
they weren't having the desired effect anyway GP suggested switch to Viagra
which only help a bit more than Cialis
OH has appointment to see ED specialist next month in meantime is trying the pistachio nuts

User
Posted 22 Jan 2015 at 18:29
I bought four weeks supply of pistachio nuts today....

I still can't find any links to official articles which say cialis is better than Viagra for nerve repair. Our ed nurse is insistent that it makes no difference, they both do the same job. The NICE guidelines seem to say that the only difference is the time the drug acts for, unless I sm looking in the wrong place?

Where did your information come from about cialis being better?

User
Posted 22 Jan 2015 at 19:54

If you Google Cialis as prophylactic Prostatectomy you should find plenty - it is common in many areas of the country to prescribe 2.5 or 5mg daily OR 10 / 20mg once or twice a week which can be cut up and taken on alternate days.

I am surprised that your ED nurse doesn't know about this. Viagra and Cialis work in opposite ways - while Viagra helps to release chemicals that increase blood flow and enlarge the penis, Cialis works by blocking the chemical that deflates the penis. Hence the active ingredients in Cialis stay in the body longer and improve blood flow to the nerve bundles rather than the actual penis.

Interesting aside though that research is showing neither Cialis or Viagra have a prophylactic impact on men who have RT

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

User
Posted 22 Jan 2015 at 20:42

Originally Posted by: Online Community Member
I bought four weeks supply of pistachio nuts today....

I still can't find any links to official articles which say cialis is better than Viagra for nerve repair. Our ed nurse is insistent that it makes no difference, they both do the same job. The NICE guidelines seem to say that the only difference is the time the drug acts for, unless I sm looking in the wrong place?

Where did your information come from about cialis being better?

 

Louise, 

I would be very wary about the boudoir department the next few weeks.  And at other times if you notice that there are abandoned "shells" appearing?

Not sure but if a gentleman munching nuts approaches you with a lascivious grin about their visage, run RUN!**

 

ATB

dave

 

** but not too far and not too fast ;-)

 

My ex was very attentive and conscientious when chewing on my nuts.  She was very attentive, thorough and persistent and very very effective.  She only stopped when the packet was empty! :-0

User
Posted 22 Jan 2015 at 21:25
I'm sorry Lyn, I don't normally consider myself thick, and I do have some medical experience, but I can't find anything that categorically says that cialis is the drug of choice. There are some studies but they're a bit beyond me.

When I relayed the opinions of the forum about cialis being better, she said 'it makes no difference they do the same job. That's the problem with forums, the information is mainly hearsay'

While I appreciate that you really do sound like you know what you're talking about, I can't afford to upset the nurse. We are seeing her on Thursday, and intend to ask her to put my OH on the cialis instead. He is not having much fun on the digestive front with the sildenafil (or indeed any other sort of fun, although we know it's really early days) and we are going to use this as a good reason to change, but I really would like to have something I can print out and hand to her with evidence that cialis is the drug of choice.

I'm at the point of giving up on this. I have googled for four nights, and got nowhere. Could you help with a link please?

Oh God, maybe I am thick...

User
Posted 22 Jan 2015 at 22:02

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

User
Posted 23 Jan 2015 at 01:05

Sorry Louise, I am not at home to search for links or research - I can only tell you that this is quite common across England. John's consultant recommended it and told us that he must be prescribed Cialis. When the GP said no, the surgeon wrote telling him that Viagra was not a suitable alternative as a prophylactic as they act in different ways. As soon as we saw the ED nurse, she prescribed 2,5mg Cialis although this was later raised to 5mg. Later on, John's prescription was:-

5mg Cialis - every day
50mg Viagra - when needed
Caverject injections - when needed

They also gave him a vacuum pump.

He was prescribed Cialis for 4 years but doesn't need it any more.

I hope your appointment goes well.

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

User
Posted 23 Jan 2015 at 01:08

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!

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

User
Posted 23 Jan 2015 at 15:33
Thank you Lyn that's helpful. I shall copy and paste it to take with me, along with a selection of others.

I'm normally quite a forceful person, but am aware it's not really as much about me at the moment. I don't want to come across as putting pressure on my OH.

Watch this space...

 
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