New member, just introducing, and asking first question.

[Mcclete22]

Hello, I just barely stumbled onto this forum/website by luck. I wanted to give a little background so people kind of know where I am coming from.

I was originally diagnosed with a UPJ obstruction in 2009. That's a ureter pelvic junction obstruction. I had corrective surgery, but the blockage had caused my kidney to swell up quite a bit already. In 2010 it was discovered I had a mass of kidney stones that wax about 1.25 inches in diameter. Surgery was done and over 100 stones removed from the same kidney. Shortly after that I began to lose bladder control. The loss of control along with painful urination, and painful urinary tract lead to a diagnosis of interstitial cystitis. My urologist determined that catheters were a huge NO with me as any catheter causes me excruciating pain.

Quite some time ago I started to have excruciating pain when I got an erection. I figured it was part of interstitial cystitis and there was nothing i could do. I also have pain in the same area when limp if the area is touched.

I looked up info just because, again thinking the pain was from interstitial cystitis. I currently avoid intercourse because the pain is so bad, and I feel guilty because my wife us living with my problem as well.

That's my story. Now for my question:
I live in the Salt Lake, Utah area. Are there any Peyronies Disease specialists in that region?

I am 37 years old, I have insurance, and I am married.
Thanks, and here a big hope that we can get some relief!

[jackp]

Mcclete22

What a story.  Looks like the closest great peyronies doctor close to you is Dr. Fred Grossman in Denver.

Good Luck

Jackp
http://jackp-penileimplant.blogspot.com  

[Mcclete22]

I saw my urologist today for my problem. And here is the gist of what he said:

He does think that I have the beginnings of Peyronies Disease.

He said there is a hard section if my penis, but that it is not yet plaque. He said it is going to be though.

He said no surgery unless the bend becomes to severe due to possible risks.

He also said I am in the "active phase" of my Peyronies, and said there is not much that can be done. He said once the active phase has run its course we need to revisit the situation, but in the active phase nothing can be done.

He did suggest I take Vitamin E, and mentioned Potabo (sp?), but that Potabo only works in crazy high doses, and so it is kind of an old treatment plan that really didn't work.

He also said that 80% of men! once out of the active phase are fine. If you read my intro post, you know of the problems I have had with my urinary system and urinary tract. My urologist says I am probably in more pain because I am hypersensitive. I mean cleaning the head for a urine sample is lots less than pleasant.

I love my urologist. The guy has cared for me and really did a lot to help me. He is a great doc and I think he is very smart. However some of the things he said seems to contradict what I have read in various places.

Do I take my docs advice of Vitamin E and wait for active phase to end? Or do I need a second opinion. I think the nearest specialist is in Denver, and right now that's not an option. It may become one, it just isn't right now.

Please any info and advice is very greatly appreciated.

[Old Man]

Mc:

I strongly urge to seek another diagnosis from a Peyronies Disease qualified uro who specializes in therapy for it. There are many things that can be done during the active stage of Peyronies Disease. That is the time that you want to prevent the plaque/nodule areas from calcifying. Once they calcify, there is little that can be done to dissolve them. SO, FIND ANOTHER GOOD Peyronies Disease URO ASAP!!

In the meantime, do some heavy reading among all the threads/topics relating to the early acute stage of Peyronies Disease to see what other members have been doing, what success they had and what happened for them.

In my personal case, proactive therapy in the early stages set the premise for getting rid of my symptoms. It was not an easy road, but the final therapy that I did resulted in getting rid of my Peyronies Disease and today, I am in a totally arrested stage, etc. As there is no real or formal therapy pattern for Peyronies Disease, you simply have to find what procedure or therapy that will at least help arrest your case.

Lastly, please consider the VED therapy, at least in the acute stage, so that you don't lose any dimensions to this dreaded malady. Early on Peyronies Disease has been shown, at least to some members, that it does work.

Old Man

[Norm]

McClete,
Your doctor is not bad, he is not wrong, he is just telling you what he knows. And what he is telling you is what the mainstream thinking is for the docs who are just not up to date on Peyronies Disease. Most of what he is telling you is correct. But he does not know what the combined experience of this forum knows, and that is that you can significantly influence your final outcome by attacking this while it is in the active phase. I second Old Mans advice. Read and study here and choose a course of action. While you are doing that, do some research into finding a Uro that you can reasonably go see and who is up to date on Peyronies Disease. I am surprised your current doc didn't refer you to someone. Good luck.  

[KAC]

Sounds very much like what I heard from my urologist, even though he is known as the Peyronie's specialist in my state. I switched from another uro to see him.  I think this is one of the challenges of finding a doc--a Peyronie's specialist is often known or referred to because s/he is the best surgeon to correct curvature.  That doesn't necessarily mean they are interested or up-to-date on non-surgical approaches. Surgeons almost always prioritize surgery.  Oddly, my uro studied with Dr. Lue in SF, yet I think I was the first person he prescribed pentox for--at my request.  I've wondered if the sexual health physicians are more directly involved in the therapies we talk about on this forum.  My uro was also  supportive of VED and traction devices and supplements--but I raised the subject.

I'm not recommending anything--just commenting.  My uro does believe that interventions like Verapamil injections are mostly useful during the active phase.  I went through 2 series (12 shots) with questionable results (the plaque in one part of my penis seemed to dissolve, but it hardened and grew in others).  If I had to do it over again, I think I would still do it--but start the injections as soon as I was diagnosed.  This would at least be something to research or discuss with him.  (And yes, I know many in this forum are against the injections.)

KAC

[Mcclete22]

No offense, this board is huge! It has a lot of info that is really good, but it has a lot of info that is overwhelming, and nod always what I need.

I have heard of Pentoxide, is this something I should bring up?

I am very open and willing yo do VEDA, and gave read about it on this board, but again there is so much info. What do I get, where do I get it? Is there any brand that is better or worse?

I will seek out another uro's advice, but what can I do from where I am at? Vitamins? Supplements? I really want to address this, and I am trying to read the board info, but I feel I am looking at a whole stadium instead of the play on the 45 yard line.

[james1947]

Mcclete22

Your sentence:

....but it has a lot of info that is overwhelming, and nod always what I need

Is not clear for me. How you know what information you need? The information is here to help people that are interested to find solution for they problem. By the way, spreading on different boards and topics what happening with you is making exactly what you are not happy with. To answer you, I need to open all the topics you posted on.
Difficult to follow you and understand what you want.
You got an "excellent" doctor that you like him very much, but he is proposing you vitamin E, Potaba and wait?
Your are also stating:

He also said that 80% of men! once out of the active phase are fine

Completely wrong!!!
If you will go on this way you will and very bad.
By the way, can you explain what VEDA is? I am interested to know, it is a kind of new treatment?

James

[LWillisjr]

He also said I am in the "active phase" of my Peyronies, and said there is not much that can be done.

He means there isn't much he can do. It is possible that traction or VED therapy could help this from getting worse during the active phase. I was willing to try whatever it took to help slow down/cure my Peyronies.

He did suggest I take Vitamin E, and mentioned Potabo

There are no studies that indicate Vitamin E alone does anything. Many on this forum have been told the same thing, and have tried Vitamin E to no effect on their Peyronies condition.

He also said that 80% of men! once out of the active phase are fine.

Because their pain went away? Because their curve was only 10-25 degrees and they learned to live with it? It may go away for a small percentage of men, but we are finding there are too many that now suffer from this and their symptoms just didn't 'go away'.

Do I take my docs advice of Vitamin E and wait for active phase to end? Or do I need a second opinion.

You don't need a second opinion. I would choose to be proactive. He might think that you can wait until the active phase is over, but he isn't the one with the disease. I for one used traction therapy, used Pentox, and had a series of VI injections. I will admit that none of these cured me, but it could have kept it from getting worse.

The bottom line is that I had to know for myself that I was doing everything possible to treat this. And I now have that piece of mind that I didn't sit back and do nothing while this disease wrecked its havoc.

Les

[emasculated]

Your doc is probably quite right when he says the hard thing is going to become a plaque but kind of contradicts himself with his 80% figure of people being "fine".
But that's the common experience with normal Urologists.....
In any case you should take the advice of people on this board.
What I learned here is that Peyronies Disease is not to be taken lightly. I'm also quite sure this often cited 5-13% (not 80%...) "spontaneous resolution" figure is entirely mythical. Maybe the really hard, severe cases just concentrate here on this board or Peyronies Disease is really just horrific.. I have not figured this out yet. Anyway...
My advice: start with the pharmacological route. Pentox is the most popular drug on this board and it has a placebo-controlled study going for it (even though it's by a weird Iranian doctor... but better then nothing). Take Pentox, daily Cialis in a low dose and why not add Potaba to the mix in case you tolerate it. Get your blood checked regularly, especially white and red blood cells and liver.
If you're testosteron is low correct this as well. Same goes for vitamin-D if there is deficiency.

Once you're on the meds for a few weeks and tolerating them well enough it's time for VED. Because _in my opinion_ the VED is more effective when combined with the plaque softening meds. But there is no controlled study of this yet as far as I know.

Those are the first and most important steps. Later you can consider some supplements people here recommend and so on.. But first things first!

[liber]

Hi Mcclete 22

I'm a new member too, I hope this will help.This link has a lot of good information. Don't panic, take your time and read through it I promise it will give a lot of guidance.
https://www.peyroniesforum.net/index.php/topic,3180.0.html

As for VED I'm sure a member will answer your question in detail.

I know exactly how you're feeling but just take your time.

Cheers....Liber  

[Mcclete22]

 
I am so happy! I have hope! I am so excited!

I followed the advice of the people on this forum, and found another urologist, and he specializes in Peyronies disease!!!!!

I just came back from my first appointment with him. I told him what my other doc said about being in the active phase, and not being able to do anything, and my new fox said he completely disagrees with doing nothing. He checked me out, and his APRN typed in a bunch of notes that he said.

Then he said that he thinks we need to move forward in an aggressive manner. I got a Pentoxide script!!! Also Cialis and he suggested traction and I got one of those from his office!!! Looks crazy, he said it is kind of a pain and a little troublesome, but I got it and starting it today. He said use if for 2 hours.

I know people on here disagree with injections, but my doc wants to try and see if it helps. So I am going to try it and see.

Not sure if it is inappropriate or not to post, but I used

http://www.peyroniesassociation.org/physician-finder/

to find my doc. If you are new and don't know where to look for a doc that can help you, that site helped me.

Don't give up, read, research, and get to a doc as soon as you can. DON'T WAIT!!!!!

Lastly, thanks to all the people who gave me advice, support, info, help, and hope. Hopefully I can get over this problem soon. I am going to do all I can to try!

[nemo]

In the years I've been on this board, the numbers of guys who seem to be finding Uro's who actually want to treat this problem seems to be growing.  That's very good news, indeed.

Congratulations, and best for successful treatment and better days ahead!

Nemo

[james1947]

Mcclete22

I am also happy for you, but can you tell us:
WHY YOU ARE NOT READING THE FORUM RULES AND OPENING THREE TOPICS ON THE INTRODUCE YOURSELF BOARD?

James

[james1947]

This topic is locked.
Please continue with specific subjects on the adequate boards

James