Louise, I can understand your (and your other other half's anxiety) at the moment but it really is early days.
Nothing permanently drastic such as confirmed ED is going to happen immediately, if indeed at all.
As has already been said your man needs to get his head round his recovery, his current incontinence and then worry about the sex side.
He is unlikely to want you to touch him yet because of the leaking and no matter how much you tell him it doesn't bother you and doesn't matter, he will feel uncomfortable with that situation. It is completely outside of his norm.
He is probably also worried that if you try to stimulate him, assuming he even had feeling yet, and it didn't work, then he will have let you down. Slowly, slowly and lovingly does it. Don't push or he'll think it's because YOU want to and inability will make him feel worse and he'll be letting you down. It is possible to have a non penetrative relationship, certainly until such time as medication/pumps work. But again care needs to be taken that he doesn't feel pushed into cuddling for instance in case he misunderstands your motives.
Talk talk talk. If you both can say honestly how you feel, then misunderstandings will be at a minimum.
He needs to know that you are there no matter what (as I'm sure you have already told him) and that you are in it together (I'm sure you've told him that too !)
Using a pump is one way of eventually getting an erection but to your other half it isn't HIM!!
I actually had a similar conversation with my other half this morning regarding his use of Viagra and that fact that at 74 we can still have a physical relationship. His answer was that he would be quite proud of himself if it was all because HE could rather than Viagra giving him the ability.
It has taken a while for him to accept that and I've had to use a lot of patience but we got there in the end.
I would have been surprised, in my limited knowledge it's true to say, that Viagra would have worked yet anyway.
And yes, Viagra requires manual and mental stimulation in order to work. Since the OH is still coming to terms with his current incontinence he probably can't see past that.
I hope he gets more information from his nurse regarding the Cialis but it really is a postcode lottery.
We asked for it and we were given Viagra as a first line with other drugs coming next. Cialis not considered at all and neither was a pump.
It's true that we hadn't gone down the route of surgery, but ED is ED.
Good luck and best wishes. Apologies if this grandmother is trying to teach you to suck eggs !! Best intentions meant
Sandra
We can't control the winds - but we can adjust our sails |
User
LouiseYou don't sound whingy or neurotic, just unknowing and anxious. As we all are at the start of our PCa experience.
Every man heals at their own rate. There is not a lot of benefit in asking how others got on, although the curiosity is understandable. It will only ever give you a ball park figure with an enormous range and variation. Those who progress faster than your OH may cause you to worry that there is something wrong with him, there is probably not. Those who progress slower than you, well, lucky you, unlucky them.
I am in the "unlucky them" category.My RRP was join May 2013. Both nerves bundles spared, fortunately. First twitching around June 2013, I think, a slight movement towards the horizontal. First dry orgasm, around July, I think? I documented my recovery on my personal story type blog, which was on the old site, but I can not find it anymore.
Anyway ED, in November 2013 I spoke with an ED specialist at the RBH In Reading. Lovely man and an expert in this area, with long waiting lists. He explained to me that it can take up to two years for ED to reappear to the stage it may peak at. And then it can still improve, but that is the sort of timescale they work to. To put it in context the progress is measured with a calendar not with a clock. I could have had orgasm through penetrative sex around November had the circumstances been favourable. And everything is working fine again now. He supported the regime of Cialis daily for general circulation recovery, and Viagra for an event. My first GP prescribed that in June 2013.
I have had two GP changes since then and they have both expressed surprise at that prescription option, but it has worked for me, so I am happy. One thing I would stress is that not all medications work for every man in the same way. Your OH might benefit from Cialis daily, and Viagra? He might not. for
As for continence, I took a different approach than most it would appear. I did not do PFEs at all after the first 2 months or so. They knackered me and did not seem to have much effect. In the evenings, early on I gave in to "the flow" and would wear a conveen and a leg bag and through the night. It gave me uninterrupted sleep, and I needed that. I was down to 1 pad a day probably in to Christmas that year, and am dry now. The odd stress squirt, which if I sense it can catch it in time. I do not even think about holding it in any more, I am dry without conscious effort. But, some men take longer. Some men get dry almost immediately. Good for them.I
f you want to get involved and get touchy, talk with him and work it out together. There is nothing more important on the recovery route than a willing and interested partner. But he will recover at his own rate.
ATBDave
Meant to add that you can do a lot of touch feely in the shower or the bath where a leak does not mater.
Edited by member 24 Jan 2015 at 12:25
| Reason: Not specified
User
I hope that you have already found my thread describing what happened in our house post-treatment. I think that you would feel less anxious if you split ED treatment into two separate things. At this stage, the Viagra your OH has been prescribed is not with the intention that it will give him an erection - your ED nurse could have perhaps explained it better. Its purpose is to increase blood flow to the area to bring increased oxygen which helps the nerve bundles to repair - it is a long-haul thing. And this was the point I was trying to make on the other thread, Cialis is more recognised for this aspect of ED recovery but if Viagra is what you've got, then it is still worth taking. The idea that he might get a stonking erection at this stage is unrealistic but that doesn't mean that the tablets aren't doing any good.
I think we already discussed the fact that for many men, the big improvement in ED comes 12 to 24 months after surgery although in my husband's case it took three years.
As for sexual activity in the meantime, I thought it was important for J to know as quickly as possible that he could have an orgasm without an erection so I set about showing him on the day he had his catheter removed - I didn't ask him first because he would have been embarrassed and worried and disbelieving and would probably have said no. You do need a lot of lube on your hands though if he isn't erect. Do you know whether he is stimulating the penis regularly through the day himself, in the shower, etc? He may be a bit shocked by how different masturbation is without an erection and may not yet be aware that lube can help enormously. We get through a lot of lube. If he thinks this is pointless at this stage because if the leaking, explain that the apparent shortening is partly due to the length of urethra he has lost and partly because the spongy tissue of his penis is not getting enough blood so the pulling and manipulation helps both of these.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Louise 1969,
I can only comment on my experience, firstly for the majority of people it takes months , probably a year plus to regain being dry
secondly the sex life may take even longer, its still very early days, you have little control over events, you can only go along with them everyones recovery time is different, I think he's probably in a normal recovery period ....good luck
User
Louise
I think it is far too early to be worried about ED. Your man is still recovering from the op and, apart from anything else, his body needs to heal.
I had my op on 20th June (and have been very lucky with the incontinence issue as I was dry, apart from occasional little squirts, immediately). I was put on 50mg sildenafil (Viagra) daily after the catheter was removed. At my six week check up this was changed to 25mg daily and 100mg once a week. In the early days, the medication is mainly to keep the blood flow going.
7 months on, I am beginning to get an occasional partial erection but I have been told that it will take longer yet. It is just a question of patience.
I would have thought it was far too early for you to be thinking about a vacuum pump, but others with more experience may have a more informed view than me.
Good luck
User
Hi Louise,
I had 50% nerve sparing ( one side )...
Immediately after my catheter was removed I was prescribed a daily dose of Cialis 5 mg by my consultant.... this was not to achieve erections but to increase blood flow around the remaining nerve bundle and hopefully aid / speed up nerve repair....
I'm now almost 7 months post catheter removal and for the last 4 months have been prescribed Cialis 20mg to be taken before an 'event'.
Cialis 20mg can be effective for up to 36 hours ( unlike Viagra ) so there is no rush or pressure on you to 'perform' instantly...
The 20 mg dose is not intended for daily use.... I'm allowed 8 tablets a month on prescription ( although some say their health authority only allows 4 )....... You can cut them in half to give you an approx 10 mg dosage if you prefer.
My GP will not prescribe the 5 mg daily dose, but will prescribe 8 x 20mg tabs per month instead!.... not sure why this is as there is very little difference in the cost.
Sexual stimulation is required in order to get any effect from Cialis 20 mg ....... I use Cialis in conjunction with my vacuum pump and to date results are encouraging, although I still need the pump to achieve a full erection.
My continence has improved over the last few months but I still leak when using the pump so it can be a bit messy. I use a condom when an erection has been achieved to contain any leakage in the bedroom...
I believe that it can take up to 3 years in some cases before you know if natural erections are possible after surgery so it's still very early days for both your hubby and for me.
Best Wishes
Luther
Edited by member 24 Jan 2015 at 14:10
| Reason: Not specified
User
Louise, I can understand your (and your other other half's anxiety) at the moment but it really is early days.
Nothing permanently drastic such as confirmed ED is going to happen immediately, if indeed at all.
As has already been said your man needs to get his head round his recovery, his current incontinence and then worry about the sex side.
He is unlikely to want you to touch him yet because of the leaking and no matter how much you tell him it doesn't bother you and doesn't matter, he will feel uncomfortable with that situation. It is completely outside of his norm.
He is probably also worried that if you try to stimulate him, assuming he even had feeling yet, and it didn't work, then he will have let you down. Slowly, slowly and lovingly does it. Don't push or he'll think it's because YOU want to and inability will make him feel worse and he'll be letting you down. It is possible to have a non penetrative relationship, certainly until such time as medication/pumps work. But again care needs to be taken that he doesn't feel pushed into cuddling for instance in case he misunderstands your motives.
Talk talk talk. If you both can say honestly how you feel, then misunderstandings will be at a minimum.
He needs to know that you are there no matter what (as I'm sure you have already told him) and that you are in it together (I'm sure you've told him that too !)
Using a pump is one way of eventually getting an erection but to your other half it isn't HIM!!
I actually had a similar conversation with my other half this morning regarding his use of Viagra and that fact that at 74 we can still have a physical relationship. His answer was that he would be quite proud of himself if it was all because HE could rather than Viagra giving him the ability.
It has taken a while for him to accept that and I've had to use a lot of patience but we got there in the end.
I would have been surprised, in my limited knowledge it's true to say, that Viagra would have worked yet anyway.
And yes, Viagra requires manual and mental stimulation in order to work. Since the OH is still coming to terms with his current incontinence he probably can't see past that.
I hope he gets more information from his nurse regarding the Cialis but it really is a postcode lottery.
We asked for it and we were given Viagra as a first line with other drugs coming next. Cialis not considered at all and neither was a pump.
It's true that we hadn't gone down the route of surgery, but ED is ED.
Good luck and best wishes. Apologies if this grandmother is trying to teach you to suck eggs !! Best intentions meant
Sandra
We can't control the winds - but we can adjust our sails |
User
LouiseYou don't sound whingy or neurotic, just unknowing and anxious. As we all are at the start of our PCa experience.
Every man heals at their own rate. There is not a lot of benefit in asking how others got on, although the curiosity is understandable. It will only ever give you a ball park figure with an enormous range and variation. Those who progress faster than your OH may cause you to worry that there is something wrong with him, there is probably not. Those who progress slower than you, well, lucky you, unlucky them.
I am in the "unlucky them" category.My RRP was join May 2013. Both nerves bundles spared, fortunately. First twitching around June 2013, I think, a slight movement towards the horizontal. First dry orgasm, around July, I think? I documented my recovery on my personal story type blog, which was on the old site, but I can not find it anymore.
Anyway ED, in November 2013 I spoke with an ED specialist at the RBH In Reading. Lovely man and an expert in this area, with long waiting lists. He explained to me that it can take up to two years for ED to reappear to the stage it may peak at. And then it can still improve, but that is the sort of timescale they work to. To put it in context the progress is measured with a calendar not with a clock. I could have had orgasm through penetrative sex around November had the circumstances been favourable. And everything is working fine again now. He supported the regime of Cialis daily for general circulation recovery, and Viagra for an event. My first GP prescribed that in June 2013.
I have had two GP changes since then and they have both expressed surprise at that prescription option, but it has worked for me, so I am happy. One thing I would stress is that not all medications work for every man in the same way. Your OH might benefit from Cialis daily, and Viagra? He might not. for
As for continence, I took a different approach than most it would appear. I did not do PFEs at all after the first 2 months or so. They knackered me and did not seem to have much effect. In the evenings, early on I gave in to "the flow" and would wear a conveen and a leg bag and through the night. It gave me uninterrupted sleep, and I needed that. I was down to 1 pad a day probably in to Christmas that year, and am dry now. The odd stress squirt, which if I sense it can catch it in time. I do not even think about holding it in any more, I am dry without conscious effort. But, some men take longer. Some men get dry almost immediately. Good for them.I
f you want to get involved and get touchy, talk with him and work it out together. There is nothing more important on the recovery route than a willing and interested partner. But he will recover at his own rate.
ATBDave
Meant to add that you can do a lot of touch feely in the shower or the bath where a leak does not mater.
Edited by member 24 Jan 2015 at 12:25
| Reason: Not specified
User
I hope that you have already found my thread describing what happened in our house post-treatment. I think that you would feel less anxious if you split ED treatment into two separate things. At this stage, the Viagra your OH has been prescribed is not with the intention that it will give him an erection - your ED nurse could have perhaps explained it better. Its purpose is to increase blood flow to the area to bring increased oxygen which helps the nerve bundles to repair - it is a long-haul thing. And this was the point I was trying to make on the other thread, Cialis is more recognised for this aspect of ED recovery but if Viagra is what you've got, then it is still worth taking. The idea that he might get a stonking erection at this stage is unrealistic but that doesn't mean that the tablets aren't doing any good.
I think we already discussed the fact that for many men, the big improvement in ED comes 12 to 24 months after surgery although in my husband's case it took three years.
As for sexual activity in the meantime, I thought it was important for J to know as quickly as possible that he could have an orgasm without an erection so I set about showing him on the day he had his catheter removed - I didn't ask him first because he would have been embarrassed and worried and disbelieving and would probably have said no. You do need a lot of lube on your hands though if he isn't erect. Do you know whether he is stimulating the penis regularly through the day himself, in the shower, etc? He may be a bit shocked by how different masturbation is without an erection and may not yet be aware that lube can help enormously. We get through a lot of lube. If he thinks this is pointless at this stage because if the leaking, explain that the apparent shortening is partly due to the length of urethra he has lost and partly because the spongy tissue of his penis is not getting enough blood so the pulling and manipulation helps both of these.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
I wonder if it would have been better posting this in the Sex & Relationships section Louise where others will be able to find it later. The moderators might be able to move it for you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
http://community.prostatecanceruk.org/posts/t10395-Regaining-Erections#post124455
Louise
I don't know if you have read through my thread, above, but it explains where I am, and I will continue to update as anything significantly different happens. 9 months post op, progress towards full erections with Sildenafil has only just started. As Lyn said, it took her OH 3 years to fully recover. My OH doesn't have a big sex drive, so I have to encourage myself(!) as well as rely on her.
As Sandra says, the more you can talk openly, give encouragment to your OH, the better. If you can find other threads I have posted in re Cialis and incontenence, you'll find more info re my recovery and attitudes. Hope this helps.
Paul
Edited by member 24 Jan 2015 at 21:56
| Reason: Not specified
Stay Calm And Carry On. |
User
Thank you all for your replies - they do help.
After reading these, I decided to try and find some written information about the benefits of using Cialis against using sildenafil. I spoke to the helpline, and they sent me some written information which seemed to firt the bill.
We went to see the continence/ED nurse ten days ago. After showing her the written info, she still said that both drugs did the same job, but if we preferred, and the GP would do so, she would be happy to recommend Cialis. We started the Cialis on Wednesday at a low 5mg dose (well the OH did!). he was also given a vacuum pump to use daily, which he does in private. He says that although the Cialis doesn't seem to work as well (although he said the sildenafil didn't work either), the side effects arent bothering him so much, so hes going to stick with it for as long as the GP will prescribe it. I think the GP is feeling guilty!
He is still struggling with the incontinence, and this is getting him down. He says it's getting no better, and even feels like it's getting worse. He is an impatient man, and trying to get him to be patient is hard work.
Onwards and upwards!