Lack of post operative support

User

Posted 20 Jan 2019 at 17:07

I had a Robotic RP in October 2017, all went well and the cancer is gone, but I am still having stress incontinence and total loss of sexual function. Before and during my operation there was advice and support by the barrow load but once you are pronounced 'Cured' there is a total lack of advice on how to cope with the physical and psychological effects which follow.

Every site I have been on lacks any such information, it seems to me that we are just left to get on with the consequences?

Has anyone else had a similar experience to mine?

User

Posted 21 Jan 2019 at 07:29

I’m not unhappy, jaded, worried or damaged, Matron.

I am here because this site has been helpful to me in the past, and hopefully I can help others likewise with my experience in the future.

Cheers, John.

User

Posted 22 Jan 2019 at 00:41

Originally Posted by: Online Community Member

I’m not unhappy, jaded, worried or damaged, Matron.

No, you are here looking for the missing 6 inches

Obviously not everyone here is damaged, but the vast majority of active members are here because they have unresolved or ongoing issues or need support. Even those of us whose only motivation is to help others have a back story, as CB points out.

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

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User

Posted 20 Jan 2019 at 19:49

Hi Billy. My husband had his RARP in November 2017. He has very slight Stress incontinence( still improving) and total ED ( non nerve sparing so will never improve naturally) with undetectable PSA so far. We have never felt abandoned though by the NHS.

The consultant has always asked about the post op side effects every time we have had follow up appointments every 3 months and offered good advice. Have you brought up your concerns at your appointments. Maybe you need to ask and tell them how you feel.

You can ask to be referred to a continence nurse/ or physiotherapist for your continence issues and an ED nurse for help with your sexual function.Maybe it depends on your consultant though so if he/she is the type that wants to sweep it under the carpet don't let them. They should still be there for you to help with the aftermath. ( Sometimes unavoidable)

Eventually though I expect there comes a time when you are as good as you can get then Yes it is a case of getting on with it. I would think there is still plenty of time for you to get help though.

Best Wishes

Ann

User

Posted 20 Jan 2019 at 22:31

Hi Billy.

56 Years old......Same experience here.

Last erection, December 8th 2016, the day before my op.

Highlight of last week......Bargain buy on ebay...... Job lot of 240 Tena Men Level 2.

Nearest I come to anything sexual is "admiring" my pert breasts.

My life has taken a bit of a downturn.
"At least you're alive" seems to be the opinion of most people I talk to.

I don't think it's just you & me who have to "get on with the consequences".

The majority of people on here seem to be happy in their new situation. I'm not.

Last meeting with my Consultant consisted of...... " Your PSA is still low enough to be classed as "undetectable", this is good. See you again in 6 months. Goodbye."

Sorry, just needed to vent.

User

Posted 20 Jan 2019 at 23:43

Billy, do you not see your urologist regularly?

If not, ask your GP to refer you to the incontinence team and also to the erectile dysfunction nurse or clinic if there is one in your area.

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

User

Posted 20 Jan 2019 at 23:49

Unklian, I don't think most people here are happy with their situation; if they were happy, they wouldn't still be using a forum like this. The guys that have been diagnosed, had treatment and then life went back to normal tend to drift away so that we are left with a jaded, worried or damaged crew.

It seems to me that your surgeon is failing you. Could you phone his secretary and ask for a sooner appointment so that you can talk about these problems? John's surgeon used to start every appointment with "So how's the continence? How's the erections?" and he had to fill in a lifestyle / impact questionnaire before the appointments to take with him. If your surgeon has not referred yo to support services then your GP is responsible - have you discussed it? Have you asked for a referral to the incontinence clinic and ED service?

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

User

Posted 21 Jan 2019 at 07:29

I’m not unhappy, jaded, worried or damaged, Matron.

I am here because this site has been helpful to me in the past, and hopefully I can help others likewise with my experience in the future.

Cheers, John.

User

Posted 21 Jan 2019 at 23:09

Hi Billy,

Unfortunately, sadly, I suspect that your experience is pretty much the norm.

Progress, recovery treatment, seems to a large extend down to what the patient initiates, researches, identifies and chases.

How can we help you?

Ask away.

Lyn's right, those of us affected, who are here still here, post-anything are generally looking or searching, and tend to be those who are damaged, jaded etc. Mind you not all of us are that way, some of us are here, still here, because we are just happy to try to help, or offer some hope or support.

How can anyone here help you? What would you like help, thoughts or a view on?

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User

Posted 22 Jan 2019 at 00:41

Originally Posted by: Online Community Member

I’m not unhappy, jaded, worried or damaged, Matron.

No, you are here looking for the missing 6 inches

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

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