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Other Peyronies Disease Discussion Boards => Progression of Peyronies Disease => Topic started by: chefcasey on September 26, 2011, 01:16:02 AM

Title: peyronies vs. corporal fibrosis
Post by: chefcasey on September 26, 2011, 01:16:02 AM
I'm seeing a new doctor now and received my 2nd ultrasound(the last one was a year ago).  This time though the new doctor says he can not see too much scarring on the tunica, which was different from the first time a year ago.

I haven't gotten any better since, so I know it couldn't have just gone away, so I'm wondering if I may have damaged the copus cavernosum and not the tunica when I injured my penis.  It might be of importance that the ultrasound machine was totally different than the first time so I'm not sure if it perhaps uses a different method to detect plaque or not.  I know a lot of guys develop vascular problems from corporal fibrosis but the first doc said my veins/arteries were functioning perfectly, and no Erectile Dysfunction. It's a little frustrating being over a year into this thing and not knowing exactly whats been injured.  All of my symptoms are exactly in line with Peyronies Disease, but I'm just not sure anymore.  Does anyone know how to tell the difference?
Title: Re: peyronies vs. corporal fibrosis
Post by: George999 on September 26, 2011, 10:24:34 AM
I think the difference in the evaluations is probably just a subjective difference on the part of the doctors.  Corporal Fibrosis is really completely different than Peyronie's and any doc would be able to tell the difference.  Corporal Fibrosis comes from things like Priapism, not from things like penile trauma.  Both can be effectively treated with Pentox, but that is were the similarity ends.  Peyronie's can lead to Coporal Fibrosis, but I really doubt that is what is happening in your case.  Whether Peyronie's scarring is significant or minor is really a subjective term.  The ONLY way to objectively evaluate the situation is to compare ultrasound images side by side.  - George
Title: Re: peyronies vs. corporal fibrosis
Post by: chefcasey on September 26, 2011, 02:28:30 PM
Thanks George,

I always thought it would be difficult to distinguish because if the erectile bodies themselves have scarring and fibrotic tissue, they wouldn't expand normally and give similar symptoms to Peyronies Disease. The problem I really have is that most of the urologists are reluctant to call my symptoms Peyronies Disease, specifically because I'm young and my deformity resulted from a sexual injury.  Some told me that I had "typical scarring" from sexual trauma and so their reluctant to treat me.  Over and over again I tell them that I have a 30 degree curve and a fair amount of narrowing and hourglass with plenty of pain, and I never can get a real course of treatment other than pentox that was prescribed for 6 months.  It just sucks being on the fence where there's definitely a huge problem for me, but not enough in the eyes of doctors to treat it with surgical means or injections.
Title: Re: peyronies vs. corporal fibrosis
Post by: Woodman on September 26, 2011, 07:15:39 PM

I was 34 when I got my first bout of Peyronies and I am 38 now. I also acquired it from a sexual injury. I ve been to about 5 uros since the very beginning and not until I found the last two that where very well versed in Peyronies did they both make a firm diagnosis from my ultrasound and history. The other 3 uros previously danced and bounced all around diagnosing it even with direct strait forwardly questioning them. For the most part they looked very unsure of themselves and not comfortable labeling my problem.

Once I found a uro who specialized in Peyronies they were very quick to diagnose my problem just from my history then confirming it with the ultrasound. It was not easy to find a qualified uro it took more over a year to finally find a doctor with the experience.

I first seen Dr. Larry Lipchultz in Houston then I flew to Chicago to see Dr. Lawrence Levine. They both confirmed without hesitation. I live in the fourth largest city in the US and there is only one specialist here. So theres not many of them. I would suggest to find a uro that is well versed in Peyronies. I would assume a good way is to post here the city and state you live in and see if someone may know of a good doc that can set you on the right path.

I wish you the best of luck I know its terribly fusterating.
Title: Re: peyronies vs. corporal fibrosis
Post by: George999 on September 26, 2011, 09:37:46 PM
I agree with Woodman.  If your docs are not willing to engage in communication on the issue, you need to find one who will.  This would likely be a sexual medicine specialist or a major league Peyronie's guy like Levine or Lue.  They will be happy to discuss ALL the options.  In the meantime, just be thankful that you have already found someone enlightened enough to prescribe Pentoxifylline.  As for Pentoxifylline, a year is not very long.  It can take three to five years to really start to see significant results.  But there ARE other options and you as the patient should be the one to make those decisions.  But if you are going the surgery route, you want th very best, and they are also the ones that will be most confident in discussing that option with you openly and frankly.  - George
Title: Re: peyronies vs. corporal fibrosis
Post by: chefcasey on September 27, 2011, 04:12:45 PM

I was able to get 2 appointments with Levine, where he prescribed pentox but stopped my prescription after 6 months.  I admit that while they were the most thorough with their ultrasound, he didn't offer me more than 6 mos of pentox and his traction protocol which I did for 500hrs.  He seems to have the mindset that "If I can't palpatate plaque with my hands then there's nothing wrong", even though both of his nurse practitioners could clearly see my scarring both on the ultrasound and upon examination.  My one visit with him, he spent maybe 5 minutes with me and really never addressed my questions, but I guess that's the tradeoff with a guy that's so busy. 
Title: Re: peyronies vs. corporal fibrosis
Post by: Worried Guy on September 27, 2011, 07:01:48 PM
3 to 5 years?  

Lue states with Pentox if you are going to see results , if any, you should witness improvements after 4-6 months and if you have not then there is little point in continuing.  I thought the idea of pentox was to use it whilst in the inflammation stage to stop the depositits of collagen forming in the first place.  Once out of the inflammation stage (12-18 months) there is little point in taking it!?  3-5 years what would one hope to achieve?  The damage is done and the scar is formed?
Title: Re: peyronies vs. corporal fibrosis
Post by: George999 on September 27, 2011, 08:31:43 PM
Certainly, in my case, it was over three years before I started to see significant results, the big advance coming when I combined it with Ubiquinol.  Early on, all it did for the most part was to stop the pain, but plaque regression and regain of lost girth took years on Pentox.  - George