Where do I start ?

I was actually refused any laxatives in Hospital, when I got home I started on senna, but they were slow to work. Our hospital now start guys on movicol before them come in for the op.

Thanks Chris

Well good to have that out of the way! Remember you have had a major op so don't do too much too soon!

Hi

Just a quick update, finally had the catheter out yesterday which was almost three weeks post op, really pleased with the result, no leakage and good control without need for pads which I was dreading but resigned too, so wondering if this will continue?

I was dry all day with no accidents, and all night, however as I had to remain at hospital until I had been to the loo four times using the flow meter followed by a bladder scan, I really drank a fair bit, and the trade off was all night long I was up every hour going to the loo, so a very poor nights sleep, urine is slightly pink to start with and at the end, also stinging a fair bit, but son goes off, I imagine this is normal as the huge great plastic pipe is now out ?

Today has been better, three or four glasses of water this morning and able to control the urge until I go to the loo, I walked a mile today and felt really knackered, I hoped I would have more stamina, but weak as a kitten, so maybe smaller walks and a little more often ? How have other people managed with fatigue three weeks post op, am I expecting too much

I have a follow up with the consultant beginning of March, but need to have a PSA test before hand, nothing happening on the ED front, but pleased to get the catheter out as I really struggled with discomfort with this, but at least things are moving forward, although still feeling a little emotional and notice every other advert seems to be about cancer charities or Tenna pads 😟

I'm stunned. Simply stunned. I can't believe that. I think I would have gone mad after everything id been through. I'm not sure what your exact rights are. I do know I wasn't allowed Cialis either , whether it be postcode or evidence related , but I did get a pump and other tablets and am now using injections for erections. I was told I could have as many as I want. You MUST complain and chase this up. So sorry you've had to experience this. Shocking!

Edited by member 01 Apr 2016 at 10:19  | Reason: Not specified

My sadness really is that the man just had no idea how continence and erectile disfunction problems effect someone and lately I just dont seem to be able to face up to problems, i think I have overdosed on problems, and now just want to roll over and go to sleep, which is so unlike me but that's the way I am at the moment, despite telling myself to man up and get on with it, I'm sure it is someone postcode lottery, I see the consultant next week again, so will discuss it with him, if he has the time.

I know exactly how you feel mate. Sometimes I just want to pack my bags and disappear and leave it all behind me. Make sure you have support and someone to chat to. Us for example and the PCUK nurses. It is true that some days are very low , but you DO get really good days too.
It's great you're seeing consultant again. If you can't get the Cialis , then insist on a pump and demo with fitting. If you can't then buy one. Contact me and I'll give you the details etc. Just make sure you start doing something to maintain your penis health ok or you can end up with atrophy / wastage.
All the best
Chris

Really feel for you - there is just no need for you to have been treated that way and no excuse. Keep your chin up because you're bound to be feeling vulnerable at the moment - you've had major surgery and you're also probably still processing all that you've had to take in over the last few months. I wish you better luck with other health professionals that you'll see.

Hi HC

I guess if you're seeing the Consultant soon, you'll get what you want regarding the low dose Cialis.  I'm in the same boat, The GP refused it even though, like you, I cited the Consultant instruction to take it.

I think part of the problem may be that the manufacturer/patent holder of Cialis has not made an application for it to be used in this manner, so it's quite easy for the NHS/NICE /All Wales Medicines Strategy Group (AWMSG) etc to be rather dismissive of attempts to allow prescribing via GPs. Yet some do. Why is this?

When I see my Consultant on 11 April, I expect that since he advised me to take it, he will prescribe 5mg Cialis. I will then ask about why he thinks it beneficial, and if there is  research  to support this. Some might think that  I should just take the Cialis and run- there seems to be such variable practice wrt GP prescribing Cialis. If you're in the dark , you stay in the dark.. 

I think the future should be that  everyone on here who  has been prescribed it by their consultant should ask if there is supporting evidence. Having got it, if they shared this info' on this forum, it might enable  a push for the wider prescribing of Cialis ( if it works).

In Wales, they seem to allow NICE to take the lead on prescribing guidelines. Cardiff has only recently had a da Vinci suite. I don't think there's one elsewhere in Wales. A lot of  prostate cancer patients have to cross into England.So, although there may be a urologist on the AWMSG, it is entirely possible that their understanding of Nerve Sparing and Cialis is little better than mine. They make the policy.

I found out about private prescriptions and asked my GP for 5mg Cialis 28 days to tide me over until I see the Consultant. The GP does not charge for this- you have to buy  the pills though from the pharmacist. There is an online regulatory system for UK based online pharmacies which suggests you get what you pay for. Be aware though that the prices online vary massively. In the end, I had Cialis posted to me  from 'Dr Fox' ( Glasgow) for £55. I reasoned it was less stressful to pay up than chunter about the perceived injustice until my follow up appointment.