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Vacuum pump while on hormone treatment

User
Posted 22 Nov 2023 at 23:48

Does anyone have experience of being prescribed/using a vacuum pump for maintenance while undergoing hormone treatment for PC? I’m asking in behalf of a friend who is on hormone treatment for 12 months. 

User
Posted 23 Nov 2023 at 01:04
NICE guidance says that a vacuum pump should be prescribed for men on HT for a limited time (6 / 12 / 18 / 24 / 36 months)but not for men on lifelong HT. In reality, I think a significant proportion of oncology teams do not consider the erectile health of men on HT unless they are pressed to do so by the patient :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2023 at 07:13

Yes, I do, but I had to fight for one on Prescription!

I developed what I thought was Peyronie’s disease whilst on HT, got no help from the NHS so made a private appointment with a specialist who wrote to my GP recommending I be prescribed with one. I then got a Somacorrect, which is more or less the same as SomaErect but with different cyclinder sizes to help cure the disease. I would recommend your friend get one for penile rehab, because even 12 months of HT may cause issues such as shrinkage and ED when finished treatment. Use it or lose it! You can buy one yourself from iMedicare but they are expensive (£250). Or alternatively you can buy a cheap one from Lovehoney, which will do the job but are nowhere near as good as the somaerect in my experience. If you can, get an appointment with the ED nurse who should be able to set the wheels in motion. She might also prescribe Tadalafil to help with blood flow. This has also helped me maintain natural erections with a little help from my wife😉😉

It’s  important that you are shown how to use the device correctly, I wasn’t and it took me quite a while to find the correct cylinder size. It has certainly helped my Peyronie’s disease and helped restore size to what it was before I started this HT. If only I could find a solution for my stiff and aching knees!

Hope some of this helps?

Derek

Edited by member 23 Nov 2023 at 07:19  | Reason: Not specified

User
Posted 23 Nov 2023 at 10:17

Lynn
Good to have you back! I had robotic surgery last year and have all the support unlike my friend who has gone privately and seems to have been left off the rada.

User
Posted 23 Nov 2023 at 10:20

Decho

i was with him last night and said I would look for guidance  - and you’re as experienced as they come for guidance. I find it strange that when treated privately there seems to be a lack of additional support.

I’m not sure his wife will be as appreciative that life can return to normal (to a degree)!

User
Posted 23 Nov 2023 at 11:44

Private Health Treatment

I was lucky to have had private health insurance when I was diagnosed because otherwise I probably would not be writing this! I was able to choose the best urologist in the London area. I had my surgery at one of the 'best' private hospitals in London. When you enter the hospital you find yourself in a different world, the receptionist are all very pretty in ultra high heels, pot plants everywhere and you had the impression that you will be safe here, well looked after and nothing to worry about. The bedrooms are five star.  The surgical team was very friendly and efficient but after I saw the consultant in the recovery room everything changed.  Nursing was awful and aftercare, particularly after the catheter was removed (five weeks after surgery) was even worse. Total cost (in 2011) £18,000! If I were able to choose the same consultant I would have preferred to be in an NHS hospital.

 '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 23 Nov 2023 at 17:35

Yes, I got one after being on HT for a year which was the point my libido reached its minimum.

Currently the Berks, Oxon, Bucks (BOB) ICB have a total ban on prescribing them. In some other areas there local bans, but no other bans across a whole ICB.

You can buy them without a prescription, around £200 for the medical grade ones which you should be able to buy without VAT as you're buying it as a medical appliance, but you'll need to ask to have the VAT taken off.

User
Posted 23 Nov 2023 at 22:24
One of the causes of Peyronie's is incorrect use of the vacuum pump so very important to ensure you are following the instructions to the letter ... better still to have a demonstration!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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