1st post

[corum]

This is my first post, although I signed up some time ago and have found it useful reading some others' experiences. I'm now 52 and having just checked back through my email to establish the date, I was surprised to find my diagnosis of Peyronie's was only 6 years ago. It feels like I have been living with this for much longer.
I first went to my GP when I noticed a small lump on the side of my penis, near the base. My initial contacts with the GP were pretty awful. He was standing in for my regular doctor and didn't hide his irritation at the fact. His first reaction was to send me away to wait for 4 weeks to see what happened before coming to see him again. When I returned shortly before 4 weeks was up, by then very worried that the lump showed no sign of disappearing, he pointed out that I was early, although he did then make a referral to a urologist. After a brief examination a few weeks later, the urologist confirmed it was Peyronie's and I came home in shock and pretty distraught. The only subsequent medical advice I had was that I could try taking vitamin E supplements as they "wouldn't do any harm".
Everything still works, more or less, but what used to be my pride and joy is now lopsided and hour-glassy and I experience pain and/or discomfort from time to time. I'm thankfully now in a supportive relationship, but part of me doesn't want to talk about it too much, and my perception of the problem veers from philosophical to hopeless. It really is a cruel condition. I have wondered about getting to see a specialist and some names are suggested on the forum, but part of me feels I could just be setting myself up for another disappointment. Perhaps I should just count myself lucky that I can still function, even if not as I wish I could. Any thoughts on this would be appreciated.

[auss1emike]

Hi Corum
I am new here too so won't start to give you advice. The only thing I will say is it is never too late to try something new. New techniques and information for all types of problems are evolving all of the time.

Aussiemike

[corum]

Thanks for the message auss1emike, and for the words of encouragement. Having largely followed the "wait and see" approach for the past few years (or is it more like, "give up and cross your fingers"?!), I'm thinking it would be better to do "something". I saw your original post mentioned Emu oil. I've never heard of that but have tried something called Bio Oil, which is supposed to be good for scarred tissue, stretch marks etc. Not sure if it has done any good, but it can't hurt, right?

[nemo]

Corum, there is lots of good information on this site regarding the most promising treatment strategies: Pentox; VED; Xiaflex; traction; various supplements (certainly not Vitamin E which has long since been abandoned as a treatment for Peyronies Disease).

Read up and I'd suggest picking one or two that sounds most appealing to you and discussing with a Urologist who has experience with Peyronies Disease (the hardest part is finding a good Uro). You can do VED/Traction/supplements without a Uro, so you're not totally dependent on the medical community, but it always helps to have the counsel of a good doctor.  

Best to you,
Nemo

[corum]

Thanks Nemo - that's appreciated. It looks like that will be my next step - finding a decent urologist. Hoping to speak to my GP about it soon and see if I can get referred.

All the best,
corum