24 and recently diagnosed in UK

[Jameeleon]

Hi all,

Pain on erection presented itself about 5 months ago, along with a more "stressed" feeling flaccid penis. "Stressed" is the best way I can describe it really- doesn't hang loosely and freely, feels tightened and retracted, though I do notice improvement when I'm sitting or laying down.

Anyways, around April I had the pain and I saw my GP (live in England) and got referred to a urologist for June (long wait!). In those two months I took VitE, arginine, gingko etc. and erectile function seemed to remain pretty normal, albeit slightly painful. The curve to left worsened only slightly but didn't bother me too much as I could still have sex.

My appointment with the urologist in June was disappointing... I got the "come back in 6 months and I pray you won't need surgery", he only did a physical examination alongside some pictures I showed him. Needless to say I went back to my GP and said I wasn't happy to sit here for 6 months doing nothing and I've managed to get a referral to David Ralph, a peyronie's specialist here in the UK, for mid October (more waiting!). By that point it will have been six months since this all began.

Currently I can see that I have lost some erect girth, I was on the narrow side to begin with , have the beginnings of hour-glassing just under my glans but my length has so far been maintained. I've bought a VED and added CoQ10 to my supplements, along with ordering a VED. I plan to convince Dr Ralph to prescribe me Pentox when I see him next month. I'm lucky enough to be in a relationship with an amazing girl who understands what's happening and is extremely supportive, makes such a difference to the psychological side of this.

Basically looking for support and advice from you guys... will pentox still be useful 6 months in? Are stem cells something to get excited about? VED protocol? What do I need to equip myself with to make sure this appointment with Dr. Ralph gets the best outcome?

Thanks for all the help this forum has already given me! Time to do battle with this thing head on!  

[Jameeleon]

Should also add that since the appointment in June my erectile function has worsened though the curve has remained the same.  

[NeoV]

Welcome to the board, and I'm sorry to hear you're going through this. If it helps, mine started at age 24, and now at 27 it's mostly gone. At times I think my penis is healthier than it ever has been, though I still have some slight indentations where the scarring is.

Pentox will be useful at any time, as it has been demonstrated to soften and reduce the size of plaques. I personally never took it beyond a few months, but the studies are good enough that I'd say anyone should go for it if they can afford it.

Seeing Dr. Ralph should be helpful, though I am not familiar with him. He should be able to give you an ultrasound to identify what's happening, but what you describe sounds like a typical case to me personally. The "stressed" flaccid you describe many of us simply refer to as inflammation. In my case, lessening sexual activity, stretching (device or manual) and low VED pumping mostly rid me of it. It seems that in my case, when I have inflammation, sexual activity nearly always worsens it if I binge or go every day for an extended period of time.

To explain a bit more, when the disease started, I was in a chronic inflammatory state, my flaccid was hard and slightly bent nearly always. I would masturbate about every day, and it just made it worse and worse. When I would take a break I would notice that it would completely go away after a week or so, but if I masturbated say, two days in a row, or even ONCE, it was likely to come back.

After getting "better", my penis is much healthier looking, and hangs perfectly downward without hinging. I can engage in sexual activity more than once a day or several days in a row, but I'm certain that if I binge too much I can see the inflammation come back. It's as if you have to rebuild your penis's tolerance to activity, not unlike any sports injury. The goal is to be functionally better. I consider rest from activity to be crucial to recovery, but not total rest, since erections are important just like exercise is for elbow tendonitis. Aiming for once a week is what helped me. In a way, getting improvement for me was almost like learning how to use my penis properly for the first time. I had to learn, for example, that daily masturbation while sitting in front of my PC, while clenching my pelvic muscles and having my penis not even 100% filled out, was destroying my penis. This is not to say that your problem is exactly like mine though.

Depending in your budget you can add other supplements in to try. Acetyl-L-Carnitine has a nice study on it, most of us consider it along with CoQ10 and Pentox, the only problem being that the dosage used in the study was 3g a day, making it more pricey than most other supplements. Supplements that help with erections would be anything that increases NO production. I started taking Pycogenol and noticed a massive improvement in erection maintenance. You can also go on low dose Cialis, which not only helps erections but has been shown to reduce scarring and fibrosis.

As of now it sounds like you're doing the right things. The VED should help you a lot, just be careful and pump low. You can consider traction as well.  

[james1947]

I just want to add that in the link bellow you will find what other people wrote about Dr. Ralph and other UK doctors:
https://www.peyroniesforum.net/index.php/topic,4063.0.html

James

[Jameeleon]

thanks for the help guys, I will get some Carnitine and Pycnogenol as well. NeoV, can you describe what you did over the three years to return to near normality? What seemed to work best? Would it be worth considering an implant?