I'm new here

[Raven99]

Guys,

Thanks for the support and encouragement. I rechecked my uro’s profile page at UCSF Med Center and it says he was one of the first uro’s to use penile infections for ED. So very puzzled why he emphasized the pain aspect so much. I got his email address and will write to ask him if that’s because there’s more pain if one has Peyronie’s Disease.

Still, I think I need to see another uro who’s got a better bedside manner in dealing with ED. Because if I let the doc give me a shot to see what it’s like I need someone gentle and reassuring or I’ll freak out.

I became used to giving myself shots for various CFS treatments, such as B-12. I was terrified at the idea back then but my CFS doc at the time was so good at giving me shots that he demonstrated how it can be painless. Once I began to give myself shots I’d occasionally do it not quite right and experience a small prick of pain. But by that point I knew how minor the pain was so I lost my fear. That’s what I’m hoping for with Trimex.

Does anyone here know a uro in the SF Bay Area? I’m not sure how to look other than via YELP which can be confusing.

Btw, the Peyronie’s drug he said would be approved by Sept is called “Xiaflex”. It’s already approved for another rare condition. I thought it would be a pill such as Trental which I just started but it’s shot and a series of shots in the area of the penis where the scarring or calcification occurs. So not something to look forward to at the moment.

Also, if anyone’s interested I found a great website/blog by a guy in Europe about all things Peyronie’s and treatments he’s tried:

http://www.mypeyronies.com/recommended- ... -plan.html

[JDavid]

Several guys here had implant surgery done by Dr. Edward Karpman in Mountain View. They all seem to have really liked him and his work. That's not to say you have to have an implant but it is one of the options. I'm seeing him on the 30th.

[Dave48003]

Nick,

I'm Dave, welcome to FT. I'm a MWM (40 yrs in July) who got an implant in 2011. As you have already discovered, inside the "walls" of FT, we don't care what you do with your penis, we just want to get you to a point that it gets hard so you can do your thing. Envision an auditorium full of naked men with erections all cheering you because you have this fabulous hard on and a grin from ear to ear. That's where you are.

Doctors, even the good ones don't understand anything that isn't in medical terms. It sounds like your guy saw a bent penis and went into auto-pilot. You need to find someone who will listen to the whole story. There is one out there. Good luck and hang in there!

[Raven99]

A very helpful conversation:

I saw my new allergist today and we got to talking about needles and shots. For some reason I told him I’d been diagnosed with Peyronie’s Disease and there was a new medication that may be available later this year but it involves a series of injections to penis directly into the placque buildup. And that sounded painful.

He says, Oh, it isn’t painful. I have ED and have been giving myself shots for years. I could have hugged him at that point. He’s in I dunno early 60s to early 70s and said he’s had ED for a very long time. I asked the name of his urologist but he doesn’t have one. just Rx’ed it for himself and gives himself shots. And he’d tried seeing a sex therapists, etc. and he finally realized it wasn’t really a psychological problem. Said he uses prostaglandin (sp?) and it’s never lost effectiveness.

So that clarifies a lot for me and I do have to find another ED friendly urologist asap.

[Woodicould]

I'm a little behind on reading posts, but hopefully I'm not too late for this to maybe help.
With your mention of chronic fatigue and other problems I wonder if you have what is called a leaky gut. That is where the intestine gets small holes in it and leaks undigested food into the blood steam. The simple cure is to take a good probiotic. I'm sure if you google "leaky gut" you can find out more.

[Raven99]

Thanks for the tips but I've had CFS for 20 years and pretty familiar with leaky gut syndrome. Been on probiotics for ages. Actually once got tested at a lab for leaky guy and the results were negative. Everything vis a vis CFS is a mass of confusion other than that among patients and docs who treat it believe it is a neuro immune disease, ie as if someone took a whack at immune system and central nervous system with a baseball bat and everything out of balance. I'd blame CFS for ED but had ED problems before CFS and until a few years ago I could at least masturbate easily. Now nada.

Raven