Starting out...

[Hieronymous]

Hi,

I very recently found this forum and have already learned a great deal in only a few hours of browsing. So thank you to all who contribute.

I'm 41 and was diagnosed with Peyronies Disease by my GP in March of this year when I was still 40. I first noticed a painful upward bend, seemingly right below the head of my penis in February along with a small firm lump in the centre just below the head. Hard to describe but if felt almost as if the left and right tips of the penis (ends of the corpora cavernosa) were splitting apart. "Whoa!" Night time erections would be painful enough to wake me up, usually at around 4.30 am. I haven't measured the angle yet (I've read the instructions on the forum, and am getting my head round using a protractor for the first time since I was in school, on the 'old chap'), but I've taken photos and estimate it's around 30-40 degrees. My girlfriend and I can still have sex.

I'd self-diagnosed on the internet before going to the GP, and seemed to be more informed than him. He read from the generic guidance I suppose in confirming that it was Peyronies Disease, referring me to a urologist, and saying that I'd need surgery. I already knew enough to know that things were a bit more complex. That was March, my Urology appointment was confirmed a couple of weeks ago, it's on July 30th. Quite a wait, but then our amazing NHS is under immense strain at the moment (Thanks Tories).

I don't really know what to expect from the upcoming appointment - how thorough it will be, how effective in determining a treatment plan or options, or if it will just lead to another referral. Any insight or pointers from those in the UK would be much appreciated. Either way, I decided not to hang around waiting.

From my general internet research (before finding this forum), I decided to try supplements and vitamins in the first instance, preferring this over more invasive or pharmacological routes. I discovered recent studies and read various blogs and opinions. I know vitamin E hasn't proved effective, but I'm taking 2 x 400mg capsules a day along with 2 x 1g of Aceytl-L-Carnitine. I recently purchased Emu Oil having read it's being trialled in a new form of Peyronies Disease or fibrosis injection (I think) which I massage in to the affected area daily. And after reading a few posts, reviewing the related studies, and checking out examine.com
(excellent excellent resource - thank you!), I'm waiting for some CoQ10 to arrive.

Results so far, I think, are positive. The pain during erection has gone, there is still an increased feeling of pressure and perhaps slight discomfort, and I'm not woken up with the pain of a night-time erection. I don't think the fibrous area has increased in size and it feels more pliable. I feel a bit in the dark about whether the supplements I'm taking are actually that effective and, until now, out on my own. However, actually having a bit of a ritual in taking a daily dose, and being mindful of my condition is making me feel much better, much more positive and I firmly believe in the power of a positive outlook. Who knows, that positivity may change as things progress or the urologist diagnoses a more serious condition. But for now, I have glowing skin from the Vitamin E and the energy boost from the ALC may have had a hand in winning the Dad's race at my kids' school sports day the other week. So, sliver linings.

This new deformity does get me down and leads to a loss of confidence in love-making and it turns me off just at the point I don't want to be turned-off, if you know what I mean? That said, I've read a few other stories on this forum, and I feel fortunate in comparison. I know it could be a lot worse.

So my plan is to carry on learning from the fine folks on this forum and the great resources that have been shared; and to share my own experiences. I will no doubt try many a crazy-sounding treatment method, but so long as it's safe I don't see much to lose at this point.

Thanks for reading.
H

[Monty]

click on link to see how i was a few months ago, any question just send me a message, also from UK.

link removed

[LWillisjr]

Sorry you've had to join us but sounds like you are on the right track.

[ethanscott]

Hello there!
Even I am new here and I recently(a week back) found out that I have erectile dysfunction.
I am seeking comfort and support here
It feels nice to be a part of a larger community and know that there are people who are with me.
Thank you.