URO frustration

[Ketric]

Over the last 5 months (since I was diagnosed) I've been on a quest for answers...well, perhaps a quest for hope. I've met with 4 different urologist and had 4 different perspectives given.
I met with Dr Alex Vanni at the Lahey clinc, who recommended a stretching device along with Pentox/L-Arginine. I wanted to get an array of advice from several Urologists so I subsequently met with 3 other local urologists who basically said..."there's nothing you can do other than surgery." Ironically, I've spent several hours on this forum researching treatments that have actually worked for others. For example, I've mentioned the PRP shot to 3 of the 4 Uro's I've met with and all 3 had zero clue what it actually was. One actually googled it while I was in the office with him!
My frustration mounting, I finally found (through this site) Dr. Michael Bedecs (from the Age Management Center in Portland, Maine) who actually administers the PRP shot! Halleluiah...I found someone who does it right in my back yard! I arranged a meeting with him several weeks back...needless to say I was extremely hopeful.
So, during my consultation with Dr Bedecs, I asked what his background with Peyronies Disease was...he said he generally administers the PRP shot for men looking for penile enhancement but has had a few cases of men coming in with moderate Peyronies Disease. I explained that I was curved roughly 35-40 up...he seemed to think 3 shots would be the best approach spanned over 6 weeks. Although, I must mention...he seemed a bit apprehensive, almost as if he's really never had any Peyronies Disease patients. He also explained that they do not take health insurance and that the shot was very expensive but he would be willing to work with me, even set up a payment plan if necessary.
This meeting was almost a month ago...just before the holidays and he said he'd touch base with me in the new year. But before I met with Dr Bedecs I had scheduled a meeting with another Urologist, Dr Graham Verlee of the Maine medical group. He was by far, the least empathic Uro I'd met with so far....he said beyond surgery, there was nothing I could do. When I asked him about Dr Bedecs, he said he had heard of him...and he's not a urologist and I shouldn't trust him with my junk.
So, I was torn...should I do nothing like most have suggested, or should I give Dr. Bedecs a try...how could it hurt. Ironically, I've placed 3 calls to Dr Bedecs over the last few weeks and he has yet to get back to me. I'm not sure if knowing I didn't have all the money required up front turned him off or that perhaps he doesn't have the confidence in his abilities regarding PRP and Peyronies Disease.
I intend on making another call to Dr Bedecs, hoping that he responds, but also wonder if is should trust him....Anyone have thoughts on all of this?  

[nemo]

Ketric, it sounds to me like you already have a gut feeling about this PRP doc. You should read the PRP threads on this forum thoroughly (including results and the debate around it) and then weigh the evidence. This doctor (from an Age Management Center, which sounds like a typical "anti-aging" clinic) admits he gives shots for "penile enhancement," is not a urologist, seems to know nothing of Peyronie's, and is flaky about returning calls. Does this sound like state-of-the-art treatment by a first-rate practitioner, or a gamble taken out of desperation? If you're in a gambling mood, again, look at the weight of the evidence presented on these forums - it's hardly conclusive, and PRP has largely become a fading topic of discussion here altogether.

I'm really sorry you're dealing with this, but I'd hate to see you throw large amounts of money down the toilet based on desperation, not results.  

Best,
Nemo

PS - just noticed this in your post. The fact that a non-urologist is talking to you about setting up a payment plan for a "treatment" three other licensed urologists hadn't even heard of ... that's trying to tell you something.  

[Ketric]

That's a great point Nemo, I guess I just needed some validation. So, regarding the PRP shot...it appeared to produce some tangible results for several of our brothers here on the forum, not so?

[Ketric]

I say all of this because I was really "hanging my hat" on the PRP shot from what I've read here

[nemo]

Ketric, it's subject to interpretation, and I'd encourage you to read the results and debate and judge for yourself.

Everything we saw here amounted to unscientific anecdotal "evidence" - men reporting their experience - which is certainly important, but inherently unscientific, and introduces a number of variables, often emotional. Photographic documentation became a point of contention (for instance some declaring they saw a reduction in curvature while others couldn't tell a "before" picture from an "after.")  For my part, I never saw a documented case where there was an actual, noticeable reduction in curvature.  Some felt they had better erections, fuller, firmer, etc., and this may in fact be true (in part no doubt to the volume of fluid injected into the penis). But when we're talking about Peyronie's Disease, curvature reduction (or verified plaque reduction) is the gold standard.  I don't believe we've actually seen that out of PRP.

Its waning popularity in discussion tends to reinforce this for me. As I've said before, if I actually saw evidence that convinced me it worked, I'd knock you down getting to the closest practitioner. I'm really sorry that you're suffering with this and doubly sorry that you've put such hope in PRP, because I think a lot of guys did too, and it made me sad to see.

Nemo

[Ketric]

I certainly appreciate your candor and knowledge on the topic...that's why I trust this site and it's members so much more than I trust others willing to charge exorbitant fees for unsubstantiated results. I think you're right...desperation pushes us to believe in options that perhaps deep down, we know won't truly help.

It's that small glimmer of hope that I think we all reach for...something, anything

[james1947]

Ketric

Nemo and me were on the opposite extreme sides of the PRP debate, this is the reason I am jumping in with a short post.
We had a few reports from forum members that stated very good results from PRP.
Desperate as everyone with this disease even my age is 67, I jumped in and made 4 sessions of PRP. A big advantage was that here the cost of one session was $180. For this amount, I was ready to take the chance. It was administered by a specialist in Anti Ageing treatment expert, exactly as I was guided on the forum. I must to say, an excellent doctor in her field.
It didn't worked for me. No curvature reduction, no gain in length and girth, no disappearance of plaques, no ED improvement. Luckily, no side effects also.
I don't want to dismiss the reports of improvements on the forum. I believe no one had some hidden interest to bluff us.
For me is just what Nemo said, the topics in the subject became very quiet, no updates.
It can be because:
1. No improvements have been monitored
2. Because the PRP treatment was very successful and they decided not to bother themselves to post and answer to more question.
Bottom line, you should decide what is good for you.

James  

[Ketric]

Thank you James...I often wonder about that too. Those who may have experienced results are happy and have moved on. At any rate, if I can find someone who can/will administer shots for a reasonable price, I'd be willing to take a chance considering there's little probability of side effects. I placed so much interest in the PRP shot because of a post you made in November 2014 with several members indicating good results.
Again, it may not work for everyone but I see no reason why others, who took the time to monitor and update their positive results, would have any reason to fabricate those results.
By the way...$180 per shot is outstanding, I was quoted $1500 per shot!!!
Thank you again James!  

[james1947]

Ketric

$1500 sounds high to me. If I am not wrong, I read of $800 in the US also.
And you are right in my opinion regarding the specific doctor you mentioned. If he don't sound sure, better find an other one.

James

[nemo]

When I ponder the amount of VEDs, Pentox and Cialis one could buy for the $4,500 this doc is wanting to charge for a 3-shot sequence of a highly questionable treatment, my stomach turns.  

Ketric, have you looked into Xiaflex?  While it's also obscenely expensive, it's possible to get most of it covered under insurance. And it's at least specifically directed at Peyronie's scarring.  

Nemo

[Ketric]

I hear you Nemo but I don't want to really pump or take pills for the rest of my life either and if I knew, maybe....just maybe $4500 would potentially reverse or significantly improve my condition I'd consider that a very small price to pay.

Yes, I've also looked into Xiaflex but some of the pics of terrible side effect frankly scared the hell out of me! Had you considered either the PRP or Xiaflex shots yet?

[nemo]

Ketric, I don't mean to psychoanalyze, but I hear you engaging in wishful thinking that PRP/Priapus is "the answer."  This is the single most active Peyronie's discussion forum on the internet, and even here it's pretty much old news. If even one person could produce clear, visible evidence that PRP significantly improved their Peyronie's Disease, this forum would be clogged with reports of guys getting the treatment, no matter the price. It just hasn't happened. In many cases, like James's, benefits were brief and fleeting. That also echoes what people were reporting on penis enlargement sites where Priapus was big talk for a while (promoted by the infamous Dr. Runnels participation).

I'm not going to try to talk you out of it if you're intent on getting it - you're an adult and should do it if you wish. I'm just going to encourage you to read all the reports and use your best judgement. Just because we want to believe there's a magic shot that will fix our Peyronie's and alleviate the need to take a more prolonged approach to treating it doesn't make it so. And in this case, that belief carries a heck of a price tag. Would I drop $4,500 for even a 50/50 chance of curing my Peyronie's?  You'd better believe it - in a heartbeat. But I don't give Priapus those kind of odds - not even close.

(As to whether I've considered Priapus or Xiaflex - you pretty much know my thoughts on Priapus, and my scarring seems to be septal or slightly on the bottom, which is not indicated for Xiaflex. So I don't think I'd be able to find a doctor to give me the injections anyway, but mine is not severe enough (at this point) that I'm ready to go that route.)

Nemo  

[Ketric]

Perhaps you're right Nemo...yes, I'm hoping for a miracle, like all of us. This is where I saw some hope:

PRIAPUS/PRP Injections Trial (forum) - Peyronies Society Forums

[nemo]

Reading that over, it strikes me as a few guys impressed by the way their suddenly bloated, well-hanging penis looked for several days, including the increase in girth this offered. It's understandable. But again - find ONE picture of a before/after showing an improvement in curvature.

My friend, you'll never know unless you try. If you've got the money and can find a better doctor, go for it. I don't think it will hurt you.

Nemo

[Ketric]

I have to say I truly appreciate your concern with allocating financial resources toward empty promises. Yes it appears tempting, but I agree, there aren't substantiated results given. For now, I'll "hang" tight
Do I have an extra $4500 to spend? Not really...I live in the northeast where it's been averaging 10-20 degrees for the last month and funding heating oil takes priority. Which also sucks, as my junk isn't a big fan of the cold! Seems to retract like a tortoise's head inside it's shell to stay warm!
Wouldn't it be interesting if some CEO, of a giant profit driven bio-medical company, suddenly developed Peyronies Disease? I think we might see more rapid progress to a cure...One can only hope!
Thanks again for the insight and opinion Nemo....I'm fairly new (6 months since diagnoses) to this, so like many...I'm researching like I was getting paid to do so.  

[nemo]

I know exactly what you mean, Ketric.  Upon having a sudden flair-up in 2013, after many years stable, I pretty much stayed on this forum for hours on end looking for hope and anything new. Natural reaction. I was extremely surprised that when I went to a doctor (not even a Uro) at the very first sign of a new nodule, and I talked about Pentox, he researched it and was happy to prescribe. This is way different from most of our experiences years ago when you couldn't convince most Uro's to let you use the drug. That's at least progress. And now Xiaflex. If you're going to get Peyronies Disease, be glad you got it now, versus even ten years ago. We are making progress, just not as fast as we'd like.

By the way, I just went onto one of the largest penis enlargement sites on the net to see what the discussion was around Priapus and it's been pretty much dead for a year or more.  And this is where they realized Runnels had at least one shill trying to drum up business. If the ardent enlargement crowd isn't going for this (and they will try ANYTHING), you can pretty much bet it's not producing long-term results.  

Nemo

[Ketric]

Nemo, what is the proposed science behind the use of Pentox for Peyronies Disease? I'll be reaching out to my uro to request a script and just would like to know more about it's efficacy.  

[nemo]

Ketric, this is from the "non-traditional treatments" section of this site:

Pentoxiphylline  (pentox or Trental) - Pentox has been used in humans in a variety of inflammatory and fibrotic conditions.  The mechanism is not fully understood; pentox blocks the transforming growth factor (TGF) B1- mediated pathway of inflammation, prevents deposition of collagen type 1, and acts as a nonspecific (PDE) inhibitor. pentox's observed suppression of collagen production in Peyronie's cells in tissue culture, as well as its efficacy in other fibrotic disorders, have resulted with it being offered to patients for treatment by a limited number of physicians.  Further studies will soon be completed but initial results seem to indicate that pentox is a useful treatment for Peyronie's disease.

Also, I'm sure there's a link somewhere on this site to research supporting the use of Pentox that some have printed off and given to their Uro, but I don't know where it is.  Perhaps James can locate it.  

Nemo

[james1947]

All the forum documents are in the library.

James

[nemo]

Here you go, Ketric:

Pentox - Dr. Lue Case Study / Levine mentions his use of Pentox - Peyronies Society Forums