Tuesday, 19 February 2013

An Email

Dear Peyronies-disease.co.uk,

I had an appointment with (name removed) who is the specialist surgeon at university hospital. The night before I went for the appointment I discovered my fourth plaque so I explained to him my desire to follow all courses of action available to me in order to prevent further advances in my disease. I asked him about traction treatments, colganese injections and vacuum treatment all of which he had the standard NHS answer for which is there are no proven clinic trials to support them. He also said that surgery would not be an option for me. By this point in time my frustrations
which have been building up for the last two years of less than wonderful treatment I feel I have had boiled over and  I explained to him how I felt that following some course of action which would at least give me hope of this not getting worse was better than doing sod all. He then explained that in his opinion I would never have the penis I did before the onset of the disease but he could see my point of view.

Fortunately he gave me a prescription for the pentoxifylline so I have been on that for three months now with no further plaques. He also arranged an appointment for a vacuum clinic which I attended and I have been following his prescribed morning and evening half hour sessions.  I have noticed a slight improvement in straightness over the last three months possibly only to the tune of 5 degrees but that is better than nothing. The wasted section has stayed as before. I also feel less discomfort when erect which is comforting. Could I possibly ask a couple of questions?

1) With regards the ved treatment they say to not over pump which I assume means to only pump to a comfortable stretch?
2) as it looks like I am not going to be one of the lucky ones where it clears to a certain extent by itself, can I expect more plaques over time if I dont stay on the pentoxifylline?
3) Will the plaques' soften over time or is their effect likely to be permanent?

thanks for your help and support.


I don't think it's accurate for (name removed) to say that there are no clinical trials to support traction and injection therapy (or ved for the matter). I would agree that surgery wouldn't be suitable where there is current plaque development. Typically surgery is carried out after several months - often a year - of 'no change' in the condition. The problem is that urologists are trained to treat medical conditions, and often not with regard to mental health. As such they can sometimes appear to be cold and dispassionate about your plight, which is the exact opposite of what someone struggling with peyronie's disease needs emotionally. My belief is that there should be a two tiered approach, where you get to see a urologist  for surgical - or conservative - treatments, but also a counsellor to deal with the emotional issues that this horrible condition brings about. There's a culture of sweeping men's sexual health issues under the carpet, and of not treating them with the seriousness they deserve.

I'm really glad, however, that he prescribed pentoxifylline. It's no miracle drug, but it's potentially very useful and good to have that going for you. I'm glad you've benefitted from the ved too. It may only be a 5 degree improvement, but who is to say what would've happened without this regimen, in the negative sense? I'd certainly say that overpumping can be a problem. It sounds like you've already got a steady and sensible approach though, so I'd keep doing what you're doing. Some men do go into gung-ho mode and before you know it they have to take breaks of weeks or months from the ved. On rare occasions they may even do permanent damage. It's best to get a sense of what is safe and sensible and stick with that.

As for plaques, it's notoriously hard to predict what will happen, though the general consensus appears to be that when sticking with a mechanical regimen (ved, traction etc) and proven oral treatments like pentoxifylline (possibly CoQ10 too) that you're doing just about all that you can to exercise the penis, deter further scarring and make improvements from the position you find yourself at. Scars can certainly soften over time and pentox helps that. They can calcify too unfortuanately (which can make surgery a problem), but pentox is very good at reversing calcification, so I would think that if you're on it already that won't even be an issue.



(Posted with permission. Identifying information removed.)

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