Thursday, 4 June 2015

Peyronie's Disease Experiences

Hey all, it's been a while since I've updated, but I'm still very much alive and kicking. A combination of my peyronie's disease becoming somewhat less of an issue (due to gradual physical improvements in the condition, and also a more contented emotional side due to a relationship) has led me away from this being so central to my life. I don't want to give the 'I'm alright jack' impression that I've just disappeared though because I certainly haven't.

If anyone has any peyronie's questions and/or experiences with urologists and so on I'm also happy to try to point you in the right direction or highlight and share your take to other site visitors. 

Friday, 6 February 2015

Lack of Understanding


I have talked previously about the lack of sympathy and seriousness with which male sexual health problems are often treated by society. This in my view contributes towards an already incredibly difficult position for men suffering from cruel and sometimes progressive or reoccurring conditions such as peyronie's disease.

Today I stumbled upon a strange and somewhat sensationalist article on the Daily Mail UK site (who'd have thought it!) stating that a man has only "100 orgasms left". It's an unusual way to frame the condition, but it's more the comments section that grabbed my attention. You would think or at least hope that a man detailing  a potentially traumatic situation and at such a young age (34) would garner a degree of sympathy from readers. Unfortunately, this is far from the reality, as the 'best rated' comments reveal:

"Get married, 100 orgasms will last the rest of your life!"

"Blimey. That would keep me going for years"

" Oh well 100 is still better than nothing. And with most blokes only lasting 1 minute 30 seconds us women won't even get 100 in our lifetime. Oh wait...thank goodness for Ann Summers."

"Arrogant guy does not want to 'waste' his orgasms on unsuitable women! Many gorgeous women will have a lucky escape then, methinks!"

So, as you can see, there is a distinct lack of acknowledgement and engagement with this man's predicament and the whole affair is either treated as a joke, or bizarrely as 'arrogance' by the sufferer. There are a few comments that are more sympathetic to this man's problems, but they are few and far between. I really do hope for a time where significant sexual health problems like peyronie's disease are treated with a little more seriousness and compassion. It's amazing considering the mockery and lack of understanding surrounding peyronie's disease, that any progress has been made regarding treatment options. Rant over.

Wednesday, 20 November 2013

Email: Choice of Urologist

Hi,

I hope you don't mind me contacting you.

I've just made an appointment to see my GP in Nov' 2013. As I have severe dupuytren's contracture in both hands,and ledderhose disease (Plantar fibromatosis) on both feet consequently I'm certain this bend and tightening (noticed just 2 days ago) will be diagnosed as Peyronie's as they're all connected. I live in London so want to have my GP refer me by way of the NHS to either Mr David Ralph or Mr Suks Minhas. Do you have an opinion who might be best to see? Or another doctor altogether. I know I'm putting you on the spot but finding any UK information is proving difficult.

My initial concern is how best to stop it's advance or slow it.

I have looked on the Peyronies Society Forum where their names have been mentioned as was the link to your Blog.

Any thoughts would be greatly appreciated however I apologise in advance if this email is not appropriate.

Regards

------

Hi,

Here's hoping that your appointment goes well. Men with dupuytren's and ledderhose often suffer from peyronie's disease too, a fact it appears you're aware of.  At least you have immediately spotted this and decided to take action. It's likely that they will suggest a conservative approach at first, possibly pentoxifylline combined with a vacuum or traction device. Injection therapy in combination with traction is also an option. Conservative approaches are often taken an an attempt to avoid surgery later down the line. These are the tried and tested treatments in terms of attempting to limit the damage that peyronie's does.

You're right about the lack of information out there with regard to peyronie's disease. It's very unfortunate, considering how many men no doubt  lose sleep over this health concern. There really aren't many 'go to' people in the UK or anywhere for peyronie's.  Both of the urologists you mentioned are respected in the field. As is Tim Whittlestone I believe. David Ralph is a top class peyronie's disease surgeon, so if it came to that, you're in good hands there. As you can see from the Tim Whittlestone email the blog received, he appears to be very approachable and empathetic. Factors that of course cannot be underrated with a troubling condition such as this.

You may have already seen these. The videos are not peyronie's disease related, but do feature David Ralph and Suks Minhas. Maybe they will play into your decision making:
 
David Ralph: http://www.youtube.com/watch?feature=player_detailpage&v=uQ_lFVtkcMM#t=452  (7:38 in)

Suks Minhas: https://www.youtube.com/watch?feature=player_detailpage&v=ev-Sc13YCX4#t=1388s (23:14)


NHS waits can often be quite prolonged, weeks at best. If finances allow, it might be worth getting a consultation privately to speed things along.

I have my fingers crossed for you.

Regards,

Peyronies-Disease.co.uk