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Living with post RARP side effects…where do we go from here?

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User
Posted 22 Apr 2024 at 22:54

Hey everyone, interested in any thoughts and your experiences please!

Steve (my husband) is 62 and 15 weeks post RARP  and 11 weeks post catheter removal. It was in for 4 weeks as apparently the urethra join to bladder was a bit tricky!   He is still fully incontinent, being very patient as we know it can take months for some people to improve….we are getting on with life and adjusting.

 thinking about the future and our moving towards recovering a sex life…he is using a manual pump that we bought at the moment just to maintain penile health, without rings.  Urology nurse has started the process of referral for ED and said he would be contacted by a pump rep……so our question is, should he be contacting his GP to discuss PDE5 inhibitors? When we read up pre surgery we got the impression that they were quite often prescribed as a matter of course post surgery but nothing has been mentioned to us.

do people think it is just too early? What in others experience is the sequence of events?

 

User
Posted 22 Apr 2024 at 23:36
It varies so much from one NHS trust to the next. The ideal situation is that the surgeon writes to the GP following the pathology report and asks the GP to prescribe daily Cialis (5mg or 2.5mg). Then urology also refer the patient to the ED clinic or andrology service for advice on / prescription for a vacuum pump. In 6 months or so, the ED nurse starts talking about taking larger doses of cialis or changing to viagra / levitra for an 'event'. If that is unsuccessful, the ED nurse shows the patient how to use injections and then writes to the GP to ask them to issue the prescription.

However ...

- some Trusts have banned the prescribing of daily Cialis

- some surgeons don't agree that daily cialis helps

- some Trusts have banned the prescribing of pumps

- some Trusts don't even have an ED / andrology service and the whole thing is down to the GP (who then has to pay for the meds .. obvious disincentive :-( )

- some Trusts / GPs will avoid prescribing injections for at least the first year, by which time atrophy has caused irreversible damage

It is good news that your area has an ED service and that you have been referred. In your shoes, I would give the urology nurse a call and ask whether daily Cialis is available in your area and, if so, go to the GP to request it.

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

User
Posted 23 Apr 2024 at 01:28

My experience for my trust. But Lyn sums it up pretty well.

Surgeon said they did not prescribe Cialis post surgery but would refer me to andrology but would have to wait 12 weeks. I purchased my own pump since I could see that nothing was going to happen quickly. I used the pump daily. Nothing materialised with andrology so after 16 weeks went to my doctor who prescribed 100mg of sildenafil. But only to be taken once or twice a week before sexual activity even though I openly discussed rehabilitation. After a few months went back to the Dr because the Sildenafil did nothing but give me a headache. He referred me to andrology and eventually got an appointment. The lady I saw at the clinic was brilliant and I was prescribed Tadalafil which works for three days after taking. Again it's supposed to be for sexual activity but because it has long lasting effects at least means I don't have to use the bloody pump on those days...

Everyone's experience of ED differs but mine started to improve after 12 months. My penis is definitely slightly shorter and wider. This is despite deligently using the pump daily until I was prescribed the Tadalafil. 

The very best of luck.

User
Posted 23 Apr 2024 at 13:07
Thanks for all the responses, really helps:

Adrian - yes we’d assumed potentially waiting for the incontinence to stop…but want to be prepared when it does (ever hopeful!!)

Steve - full nerve sparing on one side and 75% spared on the other, due to part of prostate being stuck to the bowel, hence the bowel perforation during op and no chance of sparing that bit.

The surgeon hasn’t signed Steve back to our own Trust/urology/GP as he wants to see him again six months post op to check the incontinence situation because apparently the join to bladder was a tricky one and if Steve needs further surgical intervention….he wants to take care of it (which is good)

User
Posted 23 Apr 2024 at 07:27

Hi Debbie.

I was wondering how you and Steve were getting on.

As Steve is still fully incontinent. Do you  intend waiting until he is continent before seeking help for ED? I found even when I was dry normally, I still urinated during sex usually when orgasming.

I was never prescribed any ED tablets but that may be because I had a heart condition. I was, however, automatically given an ED clinic appointment about 6 months post op. Which is where  I was precibed Invicorp, which fortunately works.

Lyn as usually has given great information and I agree with Jim's summation.

I feel sorry for you two, you've not had the best of luck with RARP. I think it is still very early days regarding incontinence, hopefully things will soon start to improve. As for returning to penetrative sex. I can remember how devastated  I felt when it wasn't an option. However, where there's a will, or as in our case a willy, there's a way.

Best of luck.

Edited by member 23 Apr 2024 at 16:49  | Reason: Additional text

User
Posted 23 Apr 2024 at 08:31

I also struggled with incontinence post surgery then had a ‘eureka’ moment at about 6/8 weeks and then steadily improved so that now just over 1 year post op I’m on 1 pad a day. I still need the security as I have the odd leak. I left hospital with a prescription for a pump and silenafil but with instructions not to use until post op review. The trust I am with have been very good. I’m still struggling with ED despite regular use of pump and silenafil. I get occasional ‘feelings’ down below but nothing to show for them! Maybe time to try tadafil? I’m not too disheartened though as my prognosis is as good as I can expect at this stage which is the main thing. My wife also secretly probably thinks her prayers have been answered…..!!!! Good luck. Time and patience help. 

User
Posted 23 Apr 2024 at 08:50
Are we correct in assuming that the RARP was nerve sparing?

I am also assuming that he is practising his kegal exercises - I have also been prescribed 13 sessions of Perineal Physiotherapy which involves something like a TENS machine in the bum for 15 minutes and then 15 minutes of muscle squeezing (bio feedback) to move a pointer on a screen. Admittedly I am in France but I have heard it's available in the UK. It has really helped me a lot.

User
Posted 23 Apr 2024 at 08:54

Originally Posted by: Online Community Member
 My wife also secretly probably thinks her prayers have been answered…..!!!!

😁 Just as well I'm now continent otherwise that would have caused a couple of laughter dribbles.

I've been using Invicorp for a few months now, and it gives me a decent erection which lasts for about two hours.

I hate to see anything go to waste, so the other day, I remarkably managed to have sex twice, during 'the hours of  firmness.'

Okay, neither were earth shattering. But they did me the world of good. I felt like I was in my prime again. I was absolutely elated. Unfortunately, my wife wasn't so impressed and slept through both. 😄

 

Edited by member 23 Apr 2024 at 13:08  | Reason: Typo

User
Posted 24 Apr 2024 at 07:39

Now you’re boasting  and showing off. I did mention invicorp to my wife - her response was ‘ don’t waste NHS resources’! At least I know my ED is not a worry for her….. Although based on your experience just once would be a shock to us both let alone anymore. 

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User
Posted 22 Apr 2024 at 23:36
It varies so much from one NHS trust to the next. The ideal situation is that the surgeon writes to the GP following the pathology report and asks the GP to prescribe daily Cialis (5mg or 2.5mg). Then urology also refer the patient to the ED clinic or andrology service for advice on / prescription for a vacuum pump. In 6 months or so, the ED nurse starts talking about taking larger doses of cialis or changing to viagra / levitra for an 'event'. If that is unsuccessful, the ED nurse shows the patient how to use injections and then writes to the GP to ask them to issue the prescription.

However ...

- some Trusts have banned the prescribing of daily Cialis

- some surgeons don't agree that daily cialis helps

- some Trusts have banned the prescribing of pumps

- some Trusts don't even have an ED / andrology service and the whole thing is down to the GP (who then has to pay for the meds .. obvious disincentive :-( )

- some Trusts / GPs will avoid prescribing injections for at least the first year, by which time atrophy has caused irreversible damage

It is good news that your area has an ED service and that you have been referred. In your shoes, I would give the urology nurse a call and ask whether daily Cialis is available in your area and, if so, go to the GP to request it.

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

User
Posted 23 Apr 2024 at 01:28

My experience for my trust. But Lyn sums it up pretty well.

Surgeon said they did not prescribe Cialis post surgery but would refer me to andrology but would have to wait 12 weeks. I purchased my own pump since I could see that nothing was going to happen quickly. I used the pump daily. Nothing materialised with andrology so after 16 weeks went to my doctor who prescribed 100mg of sildenafil. But only to be taken once or twice a week before sexual activity even though I openly discussed rehabilitation. After a few months went back to the Dr because the Sildenafil did nothing but give me a headache. He referred me to andrology and eventually got an appointment. The lady I saw at the clinic was brilliant and I was prescribed Tadalafil which works for three days after taking. Again it's supposed to be for sexual activity but because it has long lasting effects at least means I don't have to use the bloody pump on those days...

Everyone's experience of ED differs but mine started to improve after 12 months. My penis is definitely slightly shorter and wider. This is despite deligently using the pump daily until I was prescribed the Tadalafil. 

The very best of luck.

User
Posted 23 Apr 2024 at 07:27

Hi Debbie.

I was wondering how you and Steve were getting on.

As Steve is still fully incontinent. Do you  intend waiting until he is continent before seeking help for ED? I found even when I was dry normally, I still urinated during sex usually when orgasming.

I was never prescribed any ED tablets but that may be because I had a heart condition. I was, however, automatically given an ED clinic appointment about 6 months post op. Which is where  I was precibed Invicorp, which fortunately works.

Lyn as usually has given great information and I agree with Jim's summation.

I feel sorry for you two, you've not had the best of luck with RARP. I think it is still very early days regarding incontinence, hopefully things will soon start to improve. As for returning to penetrative sex. I can remember how devastated  I felt when it wasn't an option. However, where there's a will, or as in our case a willy, there's a way.

Best of luck.

Edited by member 23 Apr 2024 at 16:49  | Reason: Additional text

User
Posted 23 Apr 2024 at 08:31

I also struggled with incontinence post surgery then had a ‘eureka’ moment at about 6/8 weeks and then steadily improved so that now just over 1 year post op I’m on 1 pad a day. I still need the security as I have the odd leak. I left hospital with a prescription for a pump and silenafil but with instructions not to use until post op review. The trust I am with have been very good. I’m still struggling with ED despite regular use of pump and silenafil. I get occasional ‘feelings’ down below but nothing to show for them! Maybe time to try tadafil? I’m not too disheartened though as my prognosis is as good as I can expect at this stage which is the main thing. My wife also secretly probably thinks her prayers have been answered…..!!!! Good luck. Time and patience help. 

User
Posted 23 Apr 2024 at 08:50
Are we correct in assuming that the RARP was nerve sparing?

I am also assuming that he is practising his kegal exercises - I have also been prescribed 13 sessions of Perineal Physiotherapy which involves something like a TENS machine in the bum for 15 minutes and then 15 minutes of muscle squeezing (bio feedback) to move a pointer on a screen. Admittedly I am in France but I have heard it's available in the UK. It has really helped me a lot.

User
Posted 23 Apr 2024 at 08:54

Originally Posted by: Online Community Member
 My wife also secretly probably thinks her prayers have been answered…..!!!!

😁 Just as well I'm now continent otherwise that would have caused a couple of laughter dribbles.

I've been using Invicorp for a few months now, and it gives me a decent erection which lasts for about two hours.

I hate to see anything go to waste, so the other day, I remarkably managed to have sex twice, during 'the hours of  firmness.'

Okay, neither were earth shattering. But they did me the world of good. I felt like I was in my prime again. I was absolutely elated. Unfortunately, my wife wasn't so impressed and slept through both. 😄

 

Edited by member 23 Apr 2024 at 13:08  | Reason: Typo

User
Posted 23 Apr 2024 at 12:57

Originally Posted by: Online Community Member
It varies so much from one NHS trust to the next. The ideal situation is that the surgeon writes to the GP following the pathology report and asks the GP to prescribe daily Cialis (5mg or 2.5mg). Then urology also refer the patient to the ED clinic or andrology service for advice on / prescription for a vacuum pump. In 6 months or so, the ED nurse starts talking about taking larger doses of cialis or changing to viagra / levitra for an 'event'. If that is unsuccessful, the ED nurse shows the patient how to use injections and then writes to the GP to ask them to issue the prescription.

However ...
- some Trusts have banned the prescribing of daily Cialis
- some surgeons don't agree that daily cialis helps
- some Trusts have banned the prescribing of pumps
- some Trusts don't even have an ED / andrology service and the whole thing is down to the GP (who then has to pay for the meds .. obvious disincentive :-( )
- some Trusts / GPs will avoid prescribing injections for at least the first year, by which time atrophy has caused irreversible damage

It is good news that your area has an ED service and that you have been referred. In your shoes, I would give the urology nurse a call and ask whether daily Cialis is available in your area and, if so, go to the GP to request it.

perfect! Thank you Lyn! As usual, a great summary and explanation, really appreciated!

User
Posted 23 Apr 2024 at 13:07
Thanks for all the responses, really helps:

Adrian - yes we’d assumed potentially waiting for the incontinence to stop…but want to be prepared when it does (ever hopeful!!)

Steve - full nerve sparing on one side and 75% spared on the other, due to part of prostate being stuck to the bowel, hence the bowel perforation during op and no chance of sparing that bit.

The surgeon hasn’t signed Steve back to our own Trust/urology/GP as he wants to see him again six months post op to check the incontinence situation because apparently the join to bladder was a tricky one and if Steve needs further surgical intervention….he wants to take care of it (which is good)

User
Posted 24 Apr 2024 at 07:39

Now you’re boasting  and showing off. I did mention invicorp to my wife - her response was ‘ don’t waste NHS resources’! At least I know my ED is not a worry for her….. Although based on your experience just once would be a shock to us both let alone anymore. 

 
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