Recently Diagnosed From The UK

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Murphyslaw

Hello

I injured myself approx 7 months ago and have now been diagnosed with Peyronies.  I have a bottleneck indentation at the injury site about half way up on the left hand side with a 1 inch long scar/plaque and a 15-20 degree bend/kink to the left.

The Urologist I saw in the UK was very reluctant to prescribe anything. It appears the NHS have a wait and see approach, but I was not taking no for an answer. Thanks to this website I was armed with a considerable amount of information which I had printed off to show them. The Urologist was quite shocked as it appeared I knew more about proactive treatment in the Acute Phase than they did. I was eventually prescribed Potaba 12g/day, diclofenac 50mg/day and Vitamin E at 2g/day. I was also given a medical grade V.E.D device which I am to use for 10mins every other day for 2 weeks then everyday after that.  The urologist wasn't prepared to prescribe Pentox (despite my insistence) their reasoning was I do not have erectile dysfunction and still have good blood flow. I have a follow up appointment in 6 months at which time the Urologist will consider more treatment options.      

I recommend that if you are going for your first appointment with a Urologist you should print off as much information as possible so you get the best outcome.  I would have left empty handed if not for the great information and links on this website, so a big thanks to everyone here :)



Paolo

Murphyslaw, that is great, just shows what a little homework can do to hit the ground running, looking foward to your further posts and welcome  :)
Whenever you find yourself on the side of the majority, it is time to pause and reflect.

Kodiak

Quote from: Murphyslaw on July 10, 2017, 05:16:33 AM
The Urologist I saw in the UK was very reluctant to prescribe anything. It appears the NHS have a wait and see approach

I had that very experience. I was told best to leave well alone as treatment can lead to impotency, and to find an understanding woman. Thanks to such sound advice, I've changed from an active man into a celibate recluse.

Can you just ask your GP to prescribe said drugs? And what has your experience of treatment been? Any improvements?

Best wishes

Murphyslaw

I'm really sorry to hear about your bad experience. Correct me if I'm wrong but I've never read any report stating that oral treatments in the acute phase have a high chance of causing impotency? It appears that most NHS urologists are just not experienced in or prepared to treat this disease proactively. It breaks my heart to hear people being treated so flippantly. Could you go back to your GP again and "insist" on further help? My GP had absolutely no clue what to do, printed out some general Peyronies information from the NHS website that was last updated in 2009! and referred me to a urologist.

Right now I'm taking 12g Potaba day and 2g Vitamin E day. I've been prescribed these for 6 months until my next urologist appointment.  I've also been using the V.E.D every other day for approx 10 minutes (very carefully I might add) I've been on this plan for about 10 days with no signs of major changes yet.  I've also started an anti inflammatory diet. I know it will take many months to see any changes. I'll be sure to post further updates here.

Regards


Willywonka

Murphyslaw, well done to you for chasing the NHS up. I did nothing during the acute phase, on advice, and got nowhere. You may want to swap the Diclofenac for Naproxen, though. Diclofenac is regularly coming out worst of all the NSAIDS in clinical trials for stroke and heart attack risk, and our local NHS doctors very seldom prescribe it anymore.
WW

Murphyslaw

Hi there Willywonka

Thank you for the heads up! I was prescribed just 7 days worth of Diclofenac, the urologist was worried they might cause stomach problems so wanted to test me on them for a week. Potaba is known to cause stomach problems so I've not taken any Diclofenac. I wanted to be sure I could tolerate the Potaba before I introduced another drug. I will now hold off on the Diclofenac and approach my GP for Naproxen :)  

Regards