Vaccuum pumps. Urologist wont refer me to Ed clinic

User

Posted 16 Nov 2022 at 18:45

Hi. Quick question.
Everything I have read online says using a pump is beneficial to use and can be used early after the operation.

my physio suggested I go down this route after I got full bladder control back which was about 3 months ago. I rang my nurse to get referred to the Ed clinic which she said was no problem. However she rang me back and said that the urologist said it was too soon. And to wait for 6 months post surgery. I was initially mad but took him at his word saying he knows best.
anyway skip forward I had an appointment with him yesterday (5 and a half months post surgery) Well with a member of his team whilst she was a nice person she hadn’t even read my file as she didn’t know what Ed meds I was on. I asked about Ed clinic and rehab again and she said she would speak to him. She came back and said he said no.
then I was prescribed vitaros gel which is impossible to get here. Bad enough going to one pharmacy for it but I had to go to 6 and still unsuccessful.
the urology teams plan just seems to be take 100mg of viagra twice a week and that’s it I don’t feel that 2 erections a week is enough to maintain blood flow etc

anyway sorry about the long winded intro but what I’m asking is

1. do any of you guys or girls know is there a reason they don’t want to recommend pumps and rehab?

and 2. Is there any time that is too soon to start using a pump?

and 3. Where can I get one online? And what do I need to look for? because I’m obviously not getting anywhere with my urologist.

thanks guys.

User

Posted 16 Nov 2022 at 19:36

This

https://vaxaid.co.uk/products/vaxaid-deluxe

At no point was I told that I needed to wait months to start rehabilitation. You can claim the VAT back as a medical aid.

User

Posted 16 Nov 2022 at 22:28

You are 39, far too young to be faced with giving up on any chance of a normal sex life, so I find your urologist's attitude appalling. Fortunately, in most areas of the country your GP can also refer you to the ED clinic or andrology service - worth asking? Pump isn't usually recommended in the first 3 months post-op.

Edited by member 17 Nov 2022 at 21:50 | Reason: Not specified

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

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User

Posted 16 Nov 2022 at 19:36

This

https://vaxaid.co.uk/products/vaxaid-deluxe

At no point was I told that I needed to wait months to start rehabilitation. You can claim the VAT back as a medical aid.

User

Posted 16 Nov 2022 at 22:28

Edited by member 17 Nov 2022 at 21:50 | Reason: Not specified

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

User

Posted 17 Nov 2022 at 14:08

Thanks Lynn and Jim.
I’m just after sending an email to the clinical nurse specialist to see if she can get me any answers. We will see what comes back. I told her I was going to start a program myself. I was wondering if anyone here knows of a good online source of what sort of program to start with or work on.

User

Posted 22 Dec 2022 at 19:26

Hi,

There are a number of scientific studies that claim that early penile rehabilition by use of a vacuum pump alone or in combination with PDE-5i medication (for example 5 mg of tadalafil a day, in a one tablet a day regime) is beneficial.

a quote from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6199422/

"Normally, the best performance time for penile rehabilitation is 1 week to 1 month after RP, which was adopted in the previous numerical studies (Engel, 2011; Raina et al., 2006; Monga et al., 2006; Köhler et al., 2007). Fraiman et al. (1999) first examined the penile morphometrics for the patients after RP and indicated that denervation muscular atrophy is most apparent between the first 4–8 months after RP. "

Interestingly, the study by Christopher and Dalkin in 2007 reported that vacuum pumps could be used safely as soon as 1 day after catheter removal https://www.nature.com/articles/3901561.

If you decide to use a vacuum pump then go slow, the Vaxaid one mentioned has the advantage that it can be used with water instead of air, which balances out pressure, and is easy to control steadily. One note of warning if you happen to be on blood thinners, don't push it to the max and take extra care.

Edited by member 22 Dec 2022 at 19:31 | Reason: typographical error

User

Posted 19 Oct 2023 at 00:11

Hi there,

My consultant urologist encouraged me to start pumping as soon as possible at our meeting circa 3 weeks after my op.

He pointed me towards iMedicare (mypelvichealth.co.uk) where I contacted them directly by email.

They responded almost immediately and I was issued a form which I handed in to my GP and within 5 days I had a £160 pump on prescription.

I had my suspicions when the pump arrived but you quickly get the hang of it….just be mindful of potential scrotum suction!

I went into full panic mode as the vacuum created in the chamber tried to pull a testicle into the tube :)

I now place a strategic pinky to avoid such an episode repeating itself. I also have the presence of mind and experience to hit the ‘suction release’ button should things start to feel uncomfortable.

Best of luck. Onwards and (hopefully) upwards.

User

Posted 19 Oct 2023 at 10:01

Hi Martin

Your GP should prescribe the medical grade pump which is recommended by the NHS. You can buy it privately from imedicare.co.uk. The pump is called SOMAerect. I have used it and other similar pumps for many years with great success. You are very young and with luck and proper rehabilitation should regain your sexual function quite quickly. If you go to the following link it has a survey of best buys and other useful information.

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 19 Oct 2023 at 20:35

Glad to see you back, Lyn Eyre. You have been missed on this forum. Hope everything is OK with you and yours.

Best wishes,

JedSee.

User

Posted 19 Oct 2023 at 22:51

Unfortunately that post from Lyn was 2022! I miss her wealth of knowledge too😟

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