It is two days under 4 weeks since my laparoscopic RP.
I am feeling proud today that I went to meet a friend for lunch in London - driving to the train station, doing the train journey, tubing to Marylebone, having said lunch and not talking about my condition all the time, and making it back with very little leakage.
I have a few things on this week aimed at pushing myself a little bit so that I feel confident about managing the incontinence when I get back to work in a week's time. As well as managing the physical logistics (including having a disposable nappy bag with a spare pad and spare pair of undies in my bag!), I want to be able to have sufficient confidence that my mind is not having to work on the incontinence so much that I can't work effectively. There are two parts to that: trying to leak as little as possible, of course, but also accepting that I will leak and keeping a poker face when it happens.
As I have mentioned elsewhere a pad that has more capacity than I am expecting to need and small pants hoiked up unfashionably high help me feel things are all trussed up and contained.
My previous issue with recurrent reduced flow when I stopped ibuprofen seems to have resolved after a week on 400mg three times a day. I have had no problem with this since stopping it again from 16th April.
ED remains as expected but we have managed to enjoy some sex. I can recommend to those with ED wanting to have penetrative sex the 'penis extender'. Google 'Clearly Ample', but many makes are available. This is a hollow silicone transparent dildo, with a ring at its base. You put your balls through the ring so the toy is fixed around the top of your scrotum. Your willy then goes into the hollow of the dildo, and off you go, applying lube as required.
I was so pleased to be able to contribute to sex to climax for David. We had become worried that ED was an insurmountable nightmare side-effect. We did well to overcome our self-consciousness about using something like this together, though we each have occasionally played with sex toys, albeit almost exclusively solo.
Perhaps the condition challenging one to make this kind of change is one of the silver linings?
I would encourage people with ED and their sexual partners to try to move towards feared strange stuff like this rather than turning away from it, if you can, and if it is important to you that you maintain / regain a sex life. The first step is perhaps to look into it yourself, then let your partner know you are interested in experimenting.
On 20th I have the appointment with the CNS who specialises in penile rehabilitation. I believe the focus might be on getting erections 3 times a week to promote the kind of blood supply to the penis that prevents it fibrosing. The PGE 5 drugs need the nerves to be working, but I understand they might see if I am 'a responder' to them. If I am not I guess I will be offered alprostadil as gel (Vitaros), intraurethral pellet/stick (Muse) or intracavernosal injection (Caverject).
A YouTube video from an Australia urology conference said the pump doesn't really get the oxygenated arterial blood that one is after into the penis, as happens in an erection. It tends to draw in venous blood and keep it there, so it might help to expand the penis, but is not quite what we are after, perhaps.
The penile rehab literature does seem to have a consensus that it is 3 erections a week that are required so the old decision, from when viagra came onto the UK market, that 4 erections a month were sufficient for those with ED does not apply to us (not that it was a great decision in the first place). I am all geared up for making sure I am offered enough drugs for the three times a week, not that I have had any reason at all to expect anything other than willingness to prescribe me all the treatments I need for my cancer and the effects of its treatment.
I think my surgeon sees himself as relatively knowledgeable about penile rehabilitation. His website for private practice says he came across it in New York, if you please! (I think the French invented it, though. Just to keep stereotypes alive.)
Still no pathology! My fab CNS regularly emails to tell me she has checked and it's not there, but it really is taking a bit long. Shear volume of work divided by numbers of people doing the job, I assume ...