Monday, 26 August 2013

Peyronie's Disease and Social Networking


Social media is increasingly playing a noticeable role in our lives. Whether we're tweeting one another on Twitter, liking a facebook post from a friend or posting a comment on a Youtube video, it's something that a staggering number of us are now part of. There is also a trend to make these platforms less anonymous. Facebook for example insist that you use your own name. Google also prescribe to that philosphy of 'openness' by insisting on real names on their Google+ platform and Youtube. While there's something to be said for that approach, it also impacts upon privacy, which in turn changes behaviour. That's certainly apparent when you research peyronie's disease on any of these websites.

Facebook has over a billion active users. One thousand million. As you can imagine there are pages set up for favourite pop stars (Lady Gaga 58 million 'likes' - read 'likes' as members or followers), animals (one cats page with 2 million likes) as well as serious health topics which are often subject of public appeals - like breast cancer (various pages with hundreds of thousands of likes, one with 3 million+). What of peyronie's disease though? Well I found one page with 11 likes, one with 72 and... well that's about it. It's staggering isn't it. The condition falls so neatly into cultural ideas of masculinity, embarrassment and goodness knows what else that almost no-one on the face of the planet wants to step forward and say that they have it.

I do understand that on the whole Facebook interests a younger crowd, but 1) some young people have peyronie's disease too, and 2) many millions of older males do use Facebook. I also appreciate that compared to other health concerns like breast cancer peyronie's disease isn't as widespread. That said many millions of men have it. It's not a 'rare' condition by any means. It's the same story on Google + and even on Twitter - where again there is a tendency for people to reveal their identity and thus not be open about certain topics. twitter is also a platform that's very restrictive in terms of word count, so the complexity of the condition may not be suited to the service.

One exception to the rule is Reddit. It's a social network / news site that is much less personal. Most members are anonymous and it's common for people to create throwaway accounts where they talk about a specific issue or share a concern without making it something personal to them. As such there are at least a few peyronie's disease related posts and accompanying discussions. I view this as a real positive as almost all of those involved in these conversations are becoming more informed with regard to the physical and mental aspects of this unfortunate condition. It increases awareness, and that's something that is really important. With peyronie's in the public eye there is potential for learning, understanding and more emphasis on treatment.

Tuesday, 20 August 2013

Fractured Penis - "Wait and See"


Here is a recent piece that featured in The Guardian newspaper and on their website in July. The author, a psychotherapist specialising in treating sexual disorders, takes time to cover the emotional aspect of the condition - telling the wife not to blame herself and to retain an intimate connection with her husband if possible.  Sound advice. The comments on the actual treatment side of things didn't strike me as being particularly informed or detailed though, telling him to follow the doctors orders "to correct the buildup of plaque and/or scar tissue in a penile artery that's causing erectile pain.". The treatment prescribed according to the concerned partner writing in is "a prescribed cream". I can only assume that this is topical verapamil cream, which doesn't have a great reputation in my view.

The 'Guardian Picks' choice of 'PhilClarke' in the comment section is quite interesting. There's certainly more substance to it in regard to the physical side of things than the article. However, the comment is rather critical of peyonie's disease discussion groups on account that he feels they cater for the more extreme cases and are wishful thinkers with regard treatments. He goes on to state that he's in "wait and see mode" and that peyronie's pain will typically diminish and disappear.

I tend to agree that for most men pain caused by peyronie's disease inflammation will go away. Where I disagree is that engaging in no treatment options is a sensible option when dealing with the condition. We know for instance that Pentoxifylline is useful in improving the outcome of peyronie's and as such there's really no reason not to pursue that option. Multiple physical treatment options  can also reduce curvature in many cases. If your house is on fire you can 'wait and see' if the fire goes out or causes serious damage, it's guesswork. Or you can do something about it. My advice would be the same with peyronie's.

Saturday, 3 August 2013

Urologist Question

Dear Peyronies-disease.co.uk,

Do you know of a tactful and compassionate UK based urologist? My previous urologist was very abrupt and non caring, and I don't want to made the same mistake twice.

Any help or advice would be much appreciated,

S


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Dear S,

This is a tough question as to a certain extent it's subjective. Some urologists seeing many peyronie's disease patients every week have 'seen it all before', so may come across as indifferent as a result of that. I think it's best that I share some info that's out there and let you make up your own mind:

Here is Doctor David Ralph (respected peyronie's disease doctor) in a consultation with a man with a small penis condition: My Penis and I [2005] - YouTube

Mr Suks Minhas (University College London) discussing penis length issues: My Penis And Everyone Else's[2007] - YouTube

I know those issues aren't peyronie's disease related, but it gives you a chance to actually observe both urologists in action to see how they come across. This might result in you feeling more comfortable with booking an appointment with them.

One urologist I have seen recommended a few times in terms of his dealing with the emotional side of things is Tim Whittlestone from Bristol Urology: Bristol Urology Associates - The Team Profiles . I've known people to describe his manner as excellent and state that he put them at ease. With that in mind, maybe he would be a good choice?

Thanks

Peyronies-disease.co.uk