GENERAL COMMENTS & Questions - that won't fit under any of our other topics

[johnnyboy]

Sorry, I don't mean to bump threads up, but does anyone have any comments on my previous post?

[Liam]

Forget doctors and ultrasounds for a while.  Go out and have fun instead of worrying .  You could doctor shop your whole life away worrying about your penis.  Or, you could enjoy life.  I vote for the second.  Your symptoms don't fit Peyronies Disease and now a Urologist told you the same thing.  

As far as the appearance of you penis.  A penis is a funny looking "organ".  All men go through changes in size and shape due to temperature.  Everything you described sounds "normal".

[PlaqueFighter]

An ultrasound can determine how much calcification there is but can one tell if the plaque has calcified or not by touching it?

If so, does calcification mean that it feels like bone?

Going to the Uro soon but anxious because I heard tha verapamil (or even collagenese) won't work if the plaque has calcified.

Thanks in advance.

[couldbeworse]

P-fighter,

Since plaques in general are hard, I'd think that the only way to know for sure (besides biopsy) the degree of calcification is to use ultrasound.

Speaking to your idea that verapamil and collagenase can't help plaques with calcification, there is only weak evidence that either can help plaques free of calcification.  I'm hoping/praying that AUXL's collagenase with prove to be effective.

CouldBeWorse

[Steve]

PF,

I don't know if you've seen it, but we have the results of an un-scientific survey on Verapamil (Topically applied) here on the forum.  The general concensis was that it does little to nothing for almost everyone here who participated in the survey.  There is also a full discussion thread on Verapamil that you might want to read.  I know from personal experience that injected Verapamil (ouch) did absolutely nothing for me, and I tried that therapy when my Peyronies Disease was less than a year from onset, so I'm sure that there wasn't any calcification at that point.

[PlaqueFighter]

Thanks for your thoughts on this. I'm new here so please bear with me.

As far as topically applied Verapamil, I've seen studies that indicate that it does not get into the plaque unless applied via a specialized mechanism (ionophoresis).

As far as Verapamil injections, people have indicated that it is extremely important to find a doctor that is a peyronie's disease specialist to perform the injections.

Even expert peyronie's disease doctors like Dr. Larry Levine indicate that Verapamil may or may not work. I would tend to think that if a brilliant doctor thought that it never worked then they would stop prescribing it. How Verapamil is actually thought to work still boggles me. Somehow it is supposed to stimulate collagense activity.

I think using a VED or traction device with LOW intensity over a long period of time will be prescribed by doctors a lot more often in the future for straightening the penis. Determining the amount of force and duration scares me though because it could in theory cause more scarring.

I can't wait for the results from Dr. Larry Levine regarding use of the traction devices.

I think fixing the deviation is one thing.

But getting rid of the plaque I think will allow the penis to expand properly I'm hoping. I'm hoping future collagenese injections will help everyone in this regard.

I wonder if Auxilium is involving any top peyronie's expert like Dr. Levine in their trials. I have very little knowledge on whether to trust a study funded by the company itself.  I don't know how independent the studies are from the company itself.

For example, consider the Laser Comb for hair loss. It passed FDA approval but it sounds fishy to me. I just hope Auxilum isn't messing with people's hopes.

Greed for money can cause people and organizations to do funny things.

Oh, and for anyone taking Bromelain, I've heard that its best to get enteric coated Bromelain which is thought to be absorbed by the small intestine instead of being digested by the stomach. Bromelain is supposed to be correlated with collaganese stimulation but I can't find any real studies for this.

[Hawk]

I wonder if Auxilium is involving any top peyronie's expert like Dr. Levine in their trials. I have very little knowledge on whether to trust a study funded by the company itself.  I don't know how independent the studies are from the company itself.

For example, consider the Laser Comb for hair loss. It passed FDA approval but it sounds fishy to me. I just hope Auxilum isn't messing with people's hopes.

Greed for money can cause people and organizations to do funny things.

PF,

Welcome to the PDS.  I want to make a point or two directly relating to your points in the above quote.

While I am not precisely aware of the criteria, the FDA approval process for a "device" is very different than it is for a "drug".   Devices are held to a lower standard and can receive approval if they meet "Substantial Equivalence" to any other FDA approved device.  If a predicate device (a device that came before and employed similar technology) was approved, it almost guarantees approval.  I think the laser comb you mention coasts off the back of other approved hair growth and hair removal products.  The company then only has to prove no harm from the device.  FDA approval for drugs is very different.

Next, Auxillium is a pharmaceutical company constituted for only one reason, to make money.  That is its objective and everything it does is for that purpose.  That process has provided us with most of the drugs we have, both miracle drugs and those that have resulted in serious problems.  To make money, Auxillium has to first meet FDA approval for a drug.  It also has to have a market for its product, and charge the optimum amount (not too much or too little).  Auxillium clearly courts doctors and even funds a Peyronies Disease association which is in essence just a small group of doctors.  This is not inherently evil, it is using a promotional vehicle, and  finding an outlet for its product.

It is important that others ask the same type of questions you raise and that we always consider such issues and financial ties when looking at studies, promotions, or recommended treatments.

[couldbeworse]

Read this article today.  Discusses prostatectomy and scar prevention.

http://www.bcm.edu/news/item.cfm?newsID=817

[Hawk]

I am astounded and disappointed at what I view as misinformation from that link.  I have extensively researched night time erections (NTE).  They are not the result of "sexual content dreams" as the Baylor "education" website states.  The cyclic NTE's result from sleep cycles independent of sexual dreams and they also are now believed to use different pathways than phychologically or physically stimulated daytime erections.  I took the nightly viagra.  I was told by a well known sexual dysfunction doctor that they were not to impact erections (which men do not typically get for months after a prostatectomy even with Viagra) but to stimulate nerve growth independent of blood flow to the penis.

IMHO that site is hogwash which is certainly a pathetic state of affairs.

[Tim468]

I wonder why Auxilium is funding that research, which uses Viagra.

I think the term "sexual content dreams" is a stupid way of avoiding other terms. God knows that you are right about the function and origins of such nocturnal erections (though some do come with sexual dreams).

Tim

[Hawk]

Tim,

I missed any Auxillium connection.

I think I was so disgusted and astounded that a College of Medicine would give such a hokey explanation of NTEs that I saw nothing else.

As you point out, a sexual content dream certainly can result in an erection but as we have both stated, these are different from cyclic NTE's.

Are you sure there was an Axullium connection?  Did I miss it or is it some subtle connection I am unaware of?

[Old Man]

Hawk:

The bottom of the article had a line giving credit to the company for funding the research project.  So, I would look at things a little closer when their results are posted.

Old Man

[johnnyboy]

Thanks for the responses below.  I am optimistic that I do not have Peyronies Disease after 2 trips to a Peyronies Disease-specialist and 4 months since I've noticed my "problem".

But, I ask again, what is my problem?  Urologist says that he thinks blood seeped out of wherever and into somewhere, and that's what I feel that is hard.  But as long as erections are straight and painless I'm fine.  Can anyone elaborate on what my urologist believes?  I tried to ask him, but he seemed very confident there was no problem, so he didn't spend much time with me.  Is this firmness something I can get rid of or will go away with time?

Second, I tried taking Adderall again for studying recently.  Sure enough my penis shriveled up a lot.  I could get a normal erection from that super-shriveled state, but it took a lot of work and there was a very defined hourglass formation on it's way to erection.  It was somewhat uncomfortable around the hourglass region.  I assume that is because blood is trying to rush into an area where the vessels are constricted?  I don't know.  Any thoughts on this?  I don't need Adderall and that's not an issue with me.  But is there any harm in using Adderall, given the shriveled up penis side-effect?  Is there something I should be taking to counteract the vasoconstriction?

Thanks again everyone

[Hawk]

JB,

I cannot relate to your question enough to take you post seriously.  As I recall your initial posts about drugs and poor behaviors, and the responses from the members of this forum, I realize there is nothing we can say, because some people never learn.  

How can I reply when I first have to wonder: Are you totally nuts and obsessing over imagined penis issues . Are you self-destructive and committed to destroy your penis from some sense of self-loathing . Are you so dumb that you just cannot learn from your past behavior and therefore almost predestined to suffer a life one could be expected to avoid .

Considering the ridiculous behavior that brought you here, and the absurd return to that abusive behavior while you proclaim:

I don't need Adderall and that's not an issue with me.

I am sure most of us wonder why then do you continue?  Is this an experiment?  Is it denial? Are you clueless?  Can a person use normal thought processes to communicate anything to you that would actually make any difference?

I do not have the energy or interest in trying to figure out how to communicate helpful advice to someone that presents like a cartoon character bent on distorting or ignoring suggestions for normal self-care.  I would be no more dismayed if you had asked how to best recover from tightening your penis in a vise (once again), and what to do now that it seems a little puffy from the repeated vise activity.  Isn't the solution to a more healthy life obvious  Why even discuses subtleties, when you ignore the obvious and major issues?

I say, continue the adderall, deprive yourself of normal rest, spend at least one uninterrupted hour a day stressing and obsessing over your penis, throw in a few 4 hour masturbation sessions, and come back when you can proudly proclaim yourself to have the most destroyed penis on the forum.  By then maybe enough of your other options in life will be gone and I can talk you into contributing about 60 obsessive hours a week to work on projects for the PDS.  I need the help.

[johnnyboy]

Hawk, I want to learn more about my penis and what I am doing to it.  I may or may not have Peyronies Disease, but I feel my honest concern and interest warrants a little more respect than that.  I still have an unresolved issue with my penis, as described in my post below.  Even if it is the most benign imperfection in the world, I don't know it for a fact and I'd like to learn about the physiology and if anyone has similar experiences.  Fair?  As for Adderall usage, go ahead and judge me if you want.  Replace Adderall with any other drug that constricts blood vessels.  Cocaine, perhaps?  I want to know what my body is doing and if what I am doing to it is damaging.

I think my post deserves a little more attention than that.

[Hawk]

Johnnyboy,

That was not so much disrespect as it was sincere dismay.  I have no idea what else to say.  maybe others do.

[scott]

Not from me.  I think Hawk pretty much covered all the bases.

[Tim468]

First off, learning (and studying) is not enhanced by Adderal.

Oddly, learning seems to be best enhanced by listening.

JB, you came here concerned about your penis. Specifically, you identified a mechanism - a drug, stress, sleep deprivation and excessive masturbation - that might have led to an injury to your penis. It seems (still seems to me) that you might have caused an injury - but for now it does not seem to have led to a penile deviation per se.

You have not given us ANY detail from your urology visits except to vaguely suggest blood went from one place to another. Perhaps you had a bleed into the septum (mentioned in other threads and a potential cause of Peyronies Disease) and this has led to a resolving lump, and a potential for waisting. It is uncertain if this will continue to resolve or if it will scar down and give you a real problem.

OK - that is where you are. That is what we know. But you - incredibly - want to A) abuse adderal again, and B) SHOCKINGLY ask for help in finding a way to continue to do so without consequences.

It is f**king unbelievable, stupid, shallow and highly suggestive of a highly addictive personality. If you are so dumb as to think that you can do something again that ALREADY HURT YOU, well that shows that you are incapable of learning from your mistakes. No, you would prefer to try the same thing again and hope for a different outcome (a common definition of insanity). Incredibly, you HAVE done it again, and (why are you surprised), you have again had a problem.

I think of Hawk and of myself as "nice guys" - so if you wonder why "nice guys" are flaming you a bit, well, it is because of YOU. My personal problems may not be very apparent to me (we all have our blind spots) but it seems that you are really blind to your problems. It seems to me that you ought to get your sorry ass into therapy and try to find out why you are willing to do things to yourself that seem (for you) to run the risk of causing you to lose the ability to have a normal erection. Find out why you are here asking for help in doing that!

But believe me when I say that I will not help you in your quest to find out how to take adderal so that you can do that without hurting your penis.

"Cocaine perhaps?"

Right....

No problem here! You do not want help understanding how your body works - you want a carte blanche permission slip to destroy it mindlessly. Good luck - you're going to need it.

Tim

[Liam]

I think that may be going on here.  Why else would someone come on a respectable discussion forum with that crap?

Instead of cocaine try suppositories.

[Crook]

Because I am not sure if I even have peyronies, whats strange is my curve seems its worst by far during a semi erection, well its a twist rather then a curve, so I haveto ask.
Do you guys notice any mishape when flacid or with a semi erection, or while your starting to get an erection?
If so when is it its worst, thanks.

[Old Man]

Meanmrmustard:

If I might suggest, you should have the testicle checked for a problem with the epydidimis gland that is attached to the testicle and the vas defrens tube. Any slight injury to it can cause the swelling you are talking about along with soreness with or without erections. The cialis might be causing it to swell in the process of helping with erections.

Had a similar problem decades ago and the little gland had to be removed to correct the problem. So, on your next visit to a qualified uro ask him/her if this could be your problem.

Old Man

Moved from "Our Histories" due to forum guidelines for that topic  Hawk

[couldbeworse]

Regardless of what was said about cause of erections during sleep (perhaps the Dr was joking, maybe dumbing down his quote for the public, whatever) I am pleased that a well-known urologist at a good medical school is being funded by Auxilium for a study in preventing tunica scarring.  There are people who are spending money and using science to find solutions! All I ever do is complain and occasionally post to this BB.

[meanmrmustard]

thanks a lot for your enlightening post. could you please describe the process of removal, and the effects that it had? do you really think something like that could be the cause of severe and longtime ED?

problem is, that I'm currently living abroad (in Spain) for 10 months. i had to randomly go to some doctor in a health care center, who checked it out, said it was nothing and using firm grip of his fingers he absolutely worsened it! i'm right now feeling a constant pain, only very slightly but still. i'm so afraid of having it checked out by rude or unqualified hands again  

Moved from "Our Histories" due to forum guidelines for that topic  Hawk

[goon]

hi, is it harder to treat because i had this problem since i can remember and its really really getting me down. I have never discussed it openly with any.  i have try to with g/f but alway seemed to get off the subjust

[Old Man]

 meanmrmutard:

Sent you a reply relative the surgical removal of the epydidimis gland in a PM.

Old Man

[meanmrmustard]

holy crap, once again checking my symptoms on the internet, i came across this

http://www.nlm.nih.gov/medlineplus/ency/article/000439.htm#Symptoms

I got some of these symptoms, in particular discarge of a white fluid, guess I got urethritis, an inflammation of the urethra. how come those doctors never checked me on this?   whenever I asked what that white fluid could be, they said it can ONLY be semen, old semen from an anterior ejaculation ... hm

[George999]

Mr. Mustard, you might consider trying to get a referral to a qualified urologist from your closest consulate or embassy.  Someone there should know who the good docs are.  It definitely sounds like you might have some sort of urinary tract infection.  So you shouldn't mess around with it.

- George

[Christine]

Welcome Goon!!    Glad you are here.  I know that this is a very hard subject to open up and discuss.  Hopefully here, in this venue, you will feel more free to talk openly about where you are physically, emotionally, and get some answers to questions I am sure you are having.  

The gentlemen here are so incredibly wonderful and have a VAST amount of knowledge between them.  You will be glad that you are here soon.   If your girlfriend ever feels the need to talk to others that share the same feelings that she may have with the problems that his condition creates, please encourage her to register and join the Ladies Room.  It is so hard to sit here with questions and feelings of frustrations and not feel like you can talk to anyone about it or that no one would understand.  

If anything here at the PDS we UNDERSTAND!!!

Blessings to you both,

Christine

[Tim468]

Here are some of the latest articles in abstract form (some more relevant than others, but I threw them all in). My thoughts are that if you have diabetes, then expect more in the way of ED with your Peyronies, but also that if you develop PEyronies, you ought to LOOK for Diabetes. The surgical technique articles are for the severely fibrotic penis, and reminds me that surgery comes with risks. Scarring of the septum (the thin fibrous curtain that runs down the length of the penis dividing it into a left and right side) should now be considered an atypical cause of "Peyronie's Disease" that might lead to shortening and lessening of erectile quality, but may not really lead to a bend. That means that if we start to think of Peyronie's as a disease of fibrois, and get away from thinking of it as only being about a change in shape, we are going to do better in terms of understanding how to treat it. The last article mentions TGF pathways, and indeed finds that they are turned on in fibroblast derived from patients with Peyronies.

Finally, my use of the VED leads me to a different conclusion than theirs regarding using it to estimate angulation of the penis. They conclude that the VED allows one to underestimate the curvature, compared to that from an induced erection. However, if one is actually making a penis's fibrotic bands to stretch out a bit from using a VED (more than a mere erection does), then it is possible that the erection induced with a VED actually HAS less of a bend than that from an erection. For me, though, the lessening of the angulation takes place after about 5-10 minutes of using the VED, and lasts for about 30 minutes afterwards (all of which is an improvement compared to before). So if the methods of the article are to use the VED to induce an erection, use a tournequet, and to then immediately measure the erection, my "theory" might be irrelevant. Interesting article though.



<1>
Full Text Link Available
UI 17313425
AU Kendirci M.  Trost L.  Sikka SC.  Hellstrom WJ.
FA Kendirci, Muammer.  Trost, Landon.  Sikka, Suresh C.  Hellstrom,
 Wayne J G.
IN Tulane University, Urology, New Orleans, LA, USA.
TI Diabetes mellitus is associated with severe Peyronie's disease. SO BJU International.  99(2):383-6, 2007 Feb. AB OBJECTIVES: To evaluate the severity of penile deformity and
 penile blood flow variables in men with Peyronie's disease (Peyronies Disease) and
 diabetes mellitus (DM), and those with no risk factors. PATIENTS AND
 METHODS: Men with Peyronies Disease and DM (59 men, group 1) and those with no risk
 factors (109, group 2) were compared for penile blood flow
 variables, severity of penile deformity, patient's age, duration of
 Peyronies Disease, the presence of pain on erection, and the degree of erectile
 dysfunction (ED). The men were evaluated with penile duplex Doppler
 ultrasonography and were categorized into specific vascular groups,
 using established criteria. Penile curvature was objectively
 measured and stratified according to the Kelami classification.
 Results were compared using Student's t-test. RESULTS: Men with Peyronies Disease
 and DM (group 1) were significantly older than those in group 2. The
 duration of disease was significantly longer in group 1 than in
 group 2 (median 24 vs 12 months). The mean degree of penile
 deformity in group 1 was significantly higher than in group 2 (45.2
 degrees vs 30.2 degrees). The rate of severe penile curvature (>60
 degrees ) was more frequent in group 1 (27.1% vs 5.5%). Pain on
 erection was significantly higher in group 2 (39.7% vs 25.5%),
 whereas the rate of ED was more common in group 1 (81% vs 47%).
 Group 1 had poorer peak-systolic velocity values and significantly
 higher rates of arterial insufficiency and mixed vascular disease.
 Nonvascular causes were twice as common in group 2 than in group 1.
 CONCLUSIONS: This comparative clinical study suggests that the
 presence of DM as the only risk factor significantly increases the
 severity of Peyronies Disease. Furthermore, DM as a risk factor is associated with
 significantly worse vascular status, as shown by penile duplex
 Doppler ultrasonography, in men with Peyronies Disease.
PT Comparative Study.  Journal Article.

<2>
UI 17081216
AU Shaeer O.  Shaeer A.
FA Shaeer, Osama.  Shaeer, Ahmed.
IN Faculty of Medicine, Cairo University, Cairo, Egypt.
 [email protected]
TI Corporoscopic excavation of the fibrosed corpora cavernosa for
 penile prosethesis implantation: optical corporotomy and
 trans-corporeal resection, Shaeer's technique.
SO Journal of Sexual Medicine.  4(1):218-25, 2007 Jan.
AB INTRODUCTION: Implantation of a penile prosthesis in cases of
 neglected or resistant ischemic priapism, or delayed re-implantation
 following prosthesis infection and extraction, is usually a
 difficult and risky procedure due to fibrosis of the corpora
 cavernosa. Among the common complications are perforation of the
 urethra, tunica albuginea, and infection. The complications are
 usually due to the use of blind force against resistance. AIM: We
 propose the techniques of Trans-Corporeal Resection and Optical
 Corporotomy as adjuvant measures for excavating the fibrosed corpora
 cavernosa under vision, without the use of force against resistance.
 METHODS: Six patients with diffuse fibrosis of the corpora cavernosa
 were operated on. The instruments and technique are the same as for
 optical urethrotomy and transurethral resection. Optical Corporotomy
 was started with, where the corpora are incised from within. After
 establishment of a satisfactory passage, Trans-Corporeal Resection
 followed to scrape the fibrous tissue. Implantation of penile
 prosthesis was completed as usual. The procedure was performed
 through 1.5 cm incision in the tunica albuginea. MAIN OUTCOME
 MEASURES: Length, girth, and straightness in the erect position, as
 well as the incidence of complications. RESULTS: Operative time was
 an average of 90 minutes. No difficulty was encountered during the
 procedure. No complications were noted through 1 year of follow-up.
 CONCLUSION: Optical Corporotomy and Trans-Corporeal Resection allow
 for force-free, visually monitored excavation of the fibrosed
 corpora cavernosa, aiming at safer penile prosthesis implantation. PT Journal Article.

<3>
UI 17034410
AU Bella AJ.  Sener A.  Foell K.  Brock GB.
FA Bella, Anthony J.  Sener, Alp.  Foell, Kirsten.  Brock, Gerald B. IN Department of Urology, University of California, San Francisco,
 CA 94143-0738, USA. [email protected]
TI Nonpalpable scarring of the penile septum as a cause of erectile
 dysfunction: an atypical form of Peyronie's disease.
SO Journal of Sexual Medicine.  4(1):226-30, 2007 Jan.
AB INTRODUCTION: Men with nonpalpable isolated septal scars (ISS)
 identified with color duplex ultrasonography (CDU) comprise a group
 of previously unrecognized patients with wide-ranging sexual
 concerns. AIM: We aim to identify the clinical characteristics of
 patients presenting with this atypical form of Peyronie's disease
 characterized by the absence of palpable deformity. MATERIALS AND
 METHODS: Of 482 consecutive patients who presented to a tertiary
 care erectile dysfunction (ED) clinic and underwent CDU after
 satisfying inclusion criteria, 27 (5.6%) men with nonpalpable ISS
 and no dorsal or ventral plaque were identified. MAIN OUTCOME
 MEASURES: International Index of Erectile Function (IIEF), CDU, and
 clinical characteristics. RESULTS: The median age of the men with
 nonpalpable ISS was 49 years. The length of time from onset of
 symptoms to presentation was 22 months, and the pretreatment IIEF
 score was 14. The remaining 455 men who underwent CDU were of
 similar age (48 years) but had a markedly lower IIEF score of 9.5
 (statistical median). ISS patients presented with decreased penile
 rigidity (20), penile shortening (13), chronic pain with erection
 (13; mean 33 months), and the inability to maintain an erection (7).
 Fourteen men had failed phosphodiesterase-5 inhibitor therapy, and
 four reported unsatisfactory results. Management options included
 retrial with oral agents, intracavernous pharmacotherapy, verapamil
 injections, and surgery. CONCLUSIONS: The clinician should be
 suspicious for nonpalpable ISS in men with sexual concerns who
 present with decreased penile rigidity, length loss, and chronic
 pain with erection. Our findings support the use of CDU for this
 patient group, particularly when previous treatment has failed,
 because men with ISS had a greater likelihood of having no palpable
 deformity or curvature and ongoing penile pain.
PT Journal Article.  Research Support, Non-U.S. Gov't.

<4>
UI 17233788
AU Wilson SK.
FA Wilson, Steven K.
IN Van Buren, AR, USA.
TI Surgical techniques: modeling technique for penile curvature. SO Journal of Sexual Medicine.  4(1):231-4, 2007 Jan. PT Journal Article.

<5>
UI 17233785
AU Ohebshalom M.  Mulhall J.  Guhring P.  Parker M.
FA Ohebshalom, Michael.  Mulhall, John.  Guhring, Patricia.  Parker,
 Marilyn.
IN Department of Urology, Weill Medical College of Cornell
 University, New York, NY 10021, USA.
TI Measurement of penile curvature in Peyronie's disease patients:
 comparison of three methods.
SO Journal of Sexual Medicine.  4(1):199-203, 2007 Jan.
AB AIM: Peyronie's disease (Peyronies Disease) may be treated in a medical or
 surgical fashion. Factors involved in the decision of which
 treatment to choose include duration of disease and magnitude of
 penile deformity. Curvature can be measured using at-home
 photography (AHP), vacuum erection device (VED), or intracavernosal
 injection (ICI). This study was undertaken to determine the
 concordance between the three methods of deformity assessment.
 Patients were also questioned regarding the presence of erectile
 dysfunction (ED) based on self-report and the International Index of
 Erectile Function. MATERIALS AND METHODS: A total of 68 men
 presented to their urologist after taking penile photographs from
 three angles during maximal erectile rigidity. In the office, a VED
 was used to induce erection, and a goniometer was utilized to
 measure degree of curvature. ICI with trimix was then used to induce
 artificial erection, which was measured with a goniometer as well.
 RESULTS: There was a statistically significant difference in
 self-report curvature magnitude compared with measured ICI-assisted
 curvature. Curvature profiles included dorsal plaques in 50 patients
 (73.5%), ventral plaques in 10 (15%), and lateral in eight (11%).
 Using ICI, the mean curvature measured was 42 degrees. Mean degree
 of curvature using VED was 33 degrees, while that of photography was
 34 degrees. Photographic measurements differed most from ICI in men
 with concurrent ED (P < 0.01), while vacuum device measurements were
 most inaccurate in men with curvatures of >60 degrees. CONCLUSIONS:
 Our results show that the degree of curvature measured using
 vacuum-assisted device and AHP is underestimated as compared with
 the gold standard ICI. We therefore recommend that ICI be used to
 most accurately determine degree of deformity. If ICI is not
 available, it is imperative that the same manner of measurement be
 used between all patients in a study group, as well as during serial
 evaluation in a trial.
PT Comparative Study.  Journal Article.

<6>
UI 17233776
AU Shafik A.
FA Shafik, Ahmed.
IN Department of Surgery and Experimental Research, Faculty of
 Medicine, Cairo University, Cairo, Egypt. [email protected] TI Study of interstitial cells in the penis: human study. SO Journal of Sexual Medicine.  4(1):66-71, 2007 Jan. AB INTRODUCTION: Specialized pacemaker cells, similar to the
 interstitial cells of Cajal (ICC) of the gut, have been detected in
 the urinary organs and are thought to pace their motile activity.
 AIM: We investigated the hypothesis that such cells could also exist
 in the corpora cavernosa (CC) of the human penis. METHODS: During
 the treatment of Peyronie's disease in 11 subjects (age 42.6 +/- 3.2
 SD years), 3 x 3 mm strips were excised from each of the two CC and
 subjected to C-kit immunohistochemistry. Controls for the
 specificity of the antisera consisted of incubation of the tissue
 with normal rabbit serum substituted for the primary antiserum. MAIN
 OUTCOME MEASURES: Interstitial cells similar to ICC could exist in
 the CC based on C-kit immunohistochemistry. RESULTS: C-kit positive
 branched interstitial cells were detected in the CC. They were
 clearly distinguishable from the smooth muscle cells that were C-kit
 negative and non-branched. Although the mast cells were C-kit
 positive, they had a smooth body surface. CONCLUSIONS: Interstitial
 cells have been identified in the CC. They are similar to the ICC
 and may be responsible for initiating the slow waves recorded from
 the smooth muscle cells and for controlling their activity. We
 assume that a deficiency or absence of these cells may affect the
 erectile function of the patient. Further studies are needed to
 explore the role of these cells in erection.
PT Journal Article.

<7>
Full Text Link Available
UI 16988328
AU Hsu GL.  Chen HS.  Hsieh CH.  Chen RM.  Wen HS.  Liu LJ.  Chua C. FA Hsu, Geng-Long.  Chen, Heng-Shuen.  Hsieh, Cheng-Hsing.  Chen,
 Robert M.  Wen, Hsien-Sheng.  Liu, Li-Jen.  Chua, Ceferino. IN Microsurgical Potency Reconstruction and Research Center, Taiwan
 Adventist Hospital, 424 Ba-De Road, Sec. 2, Taipei, Taiwan, ROC.
 [email protected]
TI Long-term results of autologous venous grafts for penile
 morphological reconstruction.
SO Journal of Andrology.  28(1):186-93, 2007 Jan-Feb.
AB In order to evaluate the long-term results of autologous venous
 grafts, we present an overview of patients who underwent a procedure
 utilizing a venous patch from the deep dorsal vein with or without
 combination of the cavernosal vein in treating penile deformity.
 From March 1995 to March 2005, a total of 85 consecutive patients
 with Peyronie disease or congenital penile deviation underwent
 venous grafting. Tunical corporotomy was covered using transplanted
 venous wall sutured microscopically to collagen bundles of the inner
 circular and outer longitudinal layer of the tunica albuginea. The
 vein was sutured with the serosal side outward, after it had been
 detubularized, properly constructed, and spliced together. In this
 cohort, 48 patients with Peyronie disease and 37 with congenital
 penile deviation were respectively categorized as belonging to the
 Peyronie and congenital groups. All patients were evaluated
 preoperatively and postoperatively with the International Index of
 Erectile Function (IIEF-5) scoring, angle measurement of erectile
 penis, satisfaction with the penile shape, and a cavernosogram which
 was further available for 15 patients. Histological confirmation in
 5 cases was followed up for up to 10 years. The mean angle
 improvement was 44.8 +/- 3.6 degrees for the Peyronie group and 37.6
 +/- 3.8 degrees for the congenital group. A satisfactory penile
 shape was achieved in 77 (90.6%) patients, although 8 men (9.4%)
 complained of mild deviation of the penis (<15 degrees). Erectile
 function was good in 81 patients, although 6 of them had to use oral
 sildenafil/tadalafil postoperatively. Overall, they had a mean
 preoperative IIEF-5 score of 19.7 +/- 2.8, which increased to a mean
 postoperative score of 21.6 +/- 2.2. The cavernosograms consistently
 disclosed a good penile shape. The histological confirmation showed
 that the donor vein retained its histological character despite the
 fact that perfect coalescence and lining up with the tunica
 albuginea were noted. The autologous vein appears to be an
 acceptable graft material, and the transplanted vein may have a
 modeling action rather than a scaffolding role in venous patch
 surgery on the penile tunica albuginea. Careful microsurgical
 manipulation is required to achieve a satisfactory, sustainable
 outcome.
PT Clinical Trial.  Journal Article.

<8>
Full Text Link Available
UI 16782264
AU Haag SM.  Hauck EW.  Szardening-Kirchner C.  Diemer T.  Cha ES.
 Weidner W.  Eickelberg O.
FA Haag, Simone M.  Hauck, Ekkehard W.  Szardening-Kirchner,
 Carolin.  Diemer, Thorsten.  Cha, Eun-Sook.  Weidner, Wolfgang.
 Eickelberg, Oliver.
IN Department of Urology and Pediatric Urology, Justus Liebig
 University Giessen, Rudolf-Buchheim-Str. 7, 35385 Giessen, Germany. TI Alterations in the transforming growth factor (TGF)-beta pathway
 as a potential factor in the pathogenesis of Peyronie's disease. SO European Urology.  51(1):255-61, 2007 Jan. AB OBJECTIVES: The development of fibrotic diseases is associated
 with alterations in the transforming growth factor beta (TGF-beta)
 pathway. We have investigated the expression and activity of Smad
 transcription factors of the TGF-beta pathway in primary tunical
 fibroblasts derived from patients with Peyronie's disease and from
 controls. METHODS: Primary fibroblasts were established from
 biopsies obtained from plaques of 16 patients with Peyronie's
 disease or the tunica albuginea of 8 control patients. The
 expression and activity of Smad transcription factors in control and
 TGF-beta-stimulated primary fibroblasts were investigated at the RNA
 and protein level by reverse transcription-polymerase chain
 reaction, Western blotting, and immunofluorescence. RESULTS: RNA
 expression levels of Smad3 and Smad4 were significantly increased in
 fibroblasts from patients with Peyronie's disease. When stimulated
 with TGF-beta1, fibroblasts showed rapid nuclear translocation of
 Smad2/3, as soon as 15 min after stimulation. This effect was more
 pronounced and exhibited an earlier onset in fibroblasts from
 patients with Peyronie's disease, compared with controls. In
 addition, an increased nuclear retention time of Smad4 was observed
 in fibroblasts from patients with Peyronie's disease. CONCLUSIONS:
 The expression and activity of Smad transcription factors of the
 TGF-beta pathway is increased in fibroblasts of patients with
 Peyronie's disease. Alterations in the TGF-beta pathway seem to be a
 pathogenetic factor in the development of Peyronie's disease. PT Journal Article.  Research Support, Non-U.S. Gov't.

[litningwlf]

I hope this is the right place for me to post my question. Based on my symptoms (unable to get a rigid erection, plus a rather rapid, dramatic loss of girth and length), I assumed I had fibrosis. I suffered a really bad bending injury at a doctor's office in January. I had a unique problem (the head was losing size, but the shaft was fine and the tissue was flexible), but when they injected me to induce an erection (which was extremely rigid), they had me walk down the hall like an idiot with it, and while trying to keep it straight in my pants, it bent so severely that once the doctor examined it, it was fading on its own.

Ever since then, the shaft has been full and firm and the tissue isn't flexible like it had been my whole life. I literally have lost a half-inch in girth in the last week alone. I'm 26 and absolutely freaking out. I've been to four doctors in the last three months, including Dr. Lue in San Fran. He did an ultrasound without an injection last week and found no evidence of injury, scarring or fibrosis. He said if an injury took place and caused damage, it would have to be microscopic because he saw nothing wrong.

I want to take his prescribed dose of pentox, but I have major stomach issues and that certainly doesn't help. He said he couldn't guarantee my potency would return 100 percent, but that since I was young and that there wasn't anything on the scan, that my chances were pretty good. But at this point, I'm more concerned about the fullness and firmness of the shaft and the dramatic loss of size. From what I've read, I'm scared I have progressive Peyronie's disease, which will result in even more loss.

I don't understand how that's possible, though. How could nothing show up on the scan? If it's microscopic, then why am I having such non-microscopic problems? I also didn't get any sort of morning erections for like a month and a half, but over the last few weeks or so, I've had some blood flow there although nothing rigid.

Do you know if there's anything I can do? I'm so distressed right now, I can't think of anything else. Do I have any chance of getting the tissue to be flexible again and to stop losing size?

I hope someone can help me, because I'm terribly confused. Thanks for letting me ramble on.

-- Bob

[Hawk]

I'm 26 and absolutely freaking out. I've been to four doctors in the last three months, ...From what I've read, I'm scared I have progressive Peyronie's disease, which will result in even more loss... I'm so distressed right now, I can't think of anything else. Do I have any chance of getting the tissue to be flexible again and to stop losing size?
-- Bob

Bob, Welcome to the PDS.

It is late and I must get some rest but I wanted to at least leave you with a few words.  First, take a breath and read your quotes above and see if you can see why most men would have an erection problem under such circumstances.   Panic is your worst enemy.  If you have been to Lue, you have been to TOP NOTCH Peyronies Disease care.  You must realize you saw the best, you are now among men who care and understand, you are on the right road, you can relax and systematically analyze your situation with the help of members with a wealth of personal experience.

I and others will share more with you soon.

Good night my Friend

[Liam]

I hope to ease your mind, my quick canine friend (love your handle).  Trauma to the penis happens many times without Peyronies Disease developing.  Try researching terms like "broken penis" and "penis trauma".

I agree with Hawk.  That hurts me just thinking about it.  The reason nothing shows up is because he is looking for scar tissue or plaque.  You can have inflammation or other conditions caused by damaging blood vessels.  These can and do get better.  I would go along with Dr. Lue.  He know his sh....tuff.  

BTW,When you say a half inch, do you mean circumference or diameter?  

[litningwlf]

The thing is, I had curvature and loss of length and girth before this recent event: another stupid injury last year. I still have a bit of curvature, but it's tough for me not to believe there's some sort of peyronie's going on when the entire flaccid penis is full and firm and doesn't stretch side to side like it used to. Not to mention the dramatic loss in size, which is a half-inch in circumference and now more than a half-inch in length over the last few weeks. I know that sounds crazy, but it's what's happening. I don't know why there's such a progression now. It was the same size for a few months, and all of a sudden has become less and less elastic.

I saw Dr. Hakim in Florida who used the term "corporal fibrosis" the first time he examined me, but then backed off that diagnosis when he performed an ultrasound following injection.

I really want to believe it's going to get better on its own, but to see the loss of function and size over a period of time is keeping me from being positive.

I found this on a doctor's website, and am scared that it applies to me:
Q: I have had Peyronie's disease for seven years and have recently noticed my penis shrinking in the flaccid state and becoming hard all over. When I get an erection my penis is bent 45 degrees to the right and when semi-erect it won't get fully hard. Is the scar preventing the corpus cavernosum from expanding or is the corpus cavernosum actually turning into fibrous tissue as well? What is the cause of this shrinkage effect?

Dr Levine Answers: This scenario appears to be one of a progressive Peyronie's disease where there is a loss of elasticity in the entire jacket tissue of the penis, known as the tunica albuginea. This tunic is the tissue which expands in girth and length during the normal erection and contains the vascular tissue as it fills with blood. If the jacket tissue has lost elasticity we can see a variety of deformities including curvature if only one side of the jacket is compromised or we can see generalized loss of length if there is widespread loss of elasticity. A loss of girth may occur as well. For the most part, the scarring process involves the tunic, but there is recent evidence that there may be even an invasion of the scarring process into the underlying vascular tissue which may compromise erectile rigidity as well. To determine the nature of your Peyronie's disease, usually a duplex ultrasound evaluation is performed to examine blood flow, the characteristics of the tunic and cavernosal tissue, whether there is calcification within the plaque, and to determine erectile response and curvature when the penis is erect.

Oh, speaking of that, when I got the results from the ultrasound in January (before the injury occured), the blood flow results were great. When I did the same test in March, they used four times the prostaglandin in the injection and got half the results.

I hope I have provided some more information, so with your help, I can figure out what's going on and what I can do.

Thank you guys so much for your prompt responses and being so cool. I think I've alienated many of my friends who can't relate at this point, and I'm having a really hard time dealing with this.

I'm trying not to panic like you said, but I can't stop replaying that day in the doctor's office in my head. I don't understand how they can expect you to walk down the hall with a huge, hard erection with no gown or anything. Everything has gotten worse since.

[PainIsGrowth]

hey litningwlf,
I'm glad to hear you are taking action against the disease by seeing as many top urologists in the field.  I have a similar case to your's.  A have loss of length and girth, and noticeable decrease in elasticity.  My question is, do you recommend Dr. Hakim from Clevland Clinic.  He is probably the closest specialist in my area.  I am worried like hell about the injection if he gives me an ultrasound?  Was the injection what caused more damage to your penis?  Did you do something after the injection that damaged it, and does it feel like a normal erection that subsides in a resonable time?  Was Dr. Lue any better at diagnosing any problems (assuming you had a second ultrasound w/injection) you specified and did he recommend Pentox (Trental) even in your case.  What supplements are you taking now and has anything helped so far.  Also, how serious is you ED?  Mine went from 100% ability to never getting spontaneous erections, very weak morning wood(no rigidity), and erection falls fast without stimulation.  Best of luck to you!

p.s.  this microscopic damage theory is the worst because we know something as wrong and medical science can't even tell us!

[litningwlf]

My answers to your questions have changed in the last few minutes. I just got off the phone with Dr. Lue, and I'm in more of a panic state than ever. He, the top expert, couldn't understand why I was having such a dramatic decrease in size and elasticity. When I told him I was most concerned with the fact the tissue doesn't stretch like it used to, he told me to see a doctor in my area (Miami), Dr. Carrion, who I believe I saw a few years ago for a urological problem and who isn't very good in my opinion.

Lue said my anxiety was causing a lot of my problems, and that I shouldn't pay attention to other people (like yourselves) on message boards. How can my anxiety cause the penis to be firm and full and a lot smaller in the flaccid state? He was very short with me on the phone and pretty much hung up before I could get a word in.

For those of you who have been dealing with this for a while, can anyone offer advice on what to do? PainIsGrowth just described very similar if not the same symptoms as I have, yet we are dismissed because nothing shows up on the ultrasound.

Lue recommended Pentox, but I think just for the ED, I'm not sure. Since my stomach can't really tolerate it, he said to take 10mg of cialis every other night instead.

In so far as the injections, just be careful, you never know how your body is going to react to those. Make sure they use phenylepherine if you get a rigid erection, since that will help bring it down. Then be careful not to bend it all afterward. That's what happened to me. It got bent in my pants, and before I knew it, I'm in this situation.

I'd say if you decide you definitely need to measure the blood flow, go see Dr. Hakim. But if nothing abnormal shows up, there's not much he's going to be able to tell you.

Sorry if I haven't answered all your questions. I don't get how these doctors can tell you everything is fine when for 25+ years the tissue in my flaccid penis was stretchy and now it's not, the blood flow isn't the same and my penis is shrinking rapidly.

I've never had any mental health issues before, but I'm going absolutely nuts over this. I get the feeling that if you have these types of symptoms (ED, shrinking penis, firmness in flaccid state and loss of elasticity), there's nothing anyone can do. Please tell me I'm wrong.

[George999]

Tim, thanks for passing on the studies implicating diabetes.  I personally believe that systemic things like abnormally elevated blood glucose and insulin levels underly a lot of what makes Peyronies tick.  If indeed certain 'factors' like this create an environment favorable to the development of Peyronies and other degenerative diseases, it would also explain why Peyronies is so difficult to treat.  All of the current hot treatments for Peyronies attack the disease head on without really going after the underlying causative factors.  This is where we really need a breakthrough.  This approach has really worked well for me in dealing with hypertension.  Now I am dealing with the underlying systemic causes.  After 18 years on medication, I have now been off all medication for a full seven days and am still getting a reading of 105/59.  I know that it will be a tough battle to keep it down, but I think I am on the right track and now have plenty of tools in my kit.  I am convinced that the same strategy will work against Peyronies and am pursuing it with a passion.

- George

[howcanthisbe]

ok guys, got a quick question. I wanted to know if any of you ever experience a sharp pain in the penis while in the process of sitting down or getting up, I mean this pain is extremely painful. I have been having this pain for 4 days now, whenever I sit up or sit down it hits me. Anyone else have this with peyronies?

[Liam]

Thanks Tim!

[Liam]

We aim to identify the clinical characteristics of
 patients presenting with this atypical form of Peyronie's disease
 characterized by the absence of palpable deformity.

...because men with ISS had a greater likelihood of having no palpable
 deformity or curvature and ongoing penile pain.

Is calling ISS "atypical Peyronies Disease" like calling a veggie burger "atypical beef"?

[Tim468]

I am sorry that Dr. Lue was short with you on the phone, that must have been distressing. It is also distressing to hear him speak disparagingly of those posting here, but I think that if he were to read here he would feel 180 degrees the opposite.

The people here are telling you to do what the doctor who SAW you said to do. The opinion of an expert in the field who not only saw you and took a history, but also did diagnostic evaluations, is worth far more than the opinions of us here.

I am sitting in my home in Pittsburgh. How can I POSSIBLY be of more help to you than a doctor who has done color duplex ultrasonography etc??

Many of us have felt our penis get tighter and stiffer when it should be soft and at rest. It induces a feeling of panic (a feeling you endorse as feeling yourself). This induces the release of chemicals like adrenaline that cause the alpha adrenergic receptors in the smooth muscles of your penis to fire off and to cause the muscles to contract. That causes the penis to contract and "pull up" like it does when you are in cold water.

He has placed you on the right medicine to prevent fibrosis from developing if you have actually injured yourself in such a way that he cannot see it, but it is still there (ie microscopic injury). IOW, he has taken you seriously, and put you on state of the art medicines. But instead of taking the medicine, you are here posting about how confused you are, how concerned you are, and whining about how not nice he was to you on the phone when he advised you to stop posting and reading here and to do what you were told to do.

He even explained (perhaps not well enough for your taste - but he explained it) how anxiety can make this worse for you.

So my advice is to take the medicines he advised you to take. Take warm baths, and do some self massage regularly (at least when you can - not while, say, talking to your parents!), and work on relaxation. I have found that when I am a bit panicked about my penis, I can go to the bathroom and run hot water in the sink and lean forward and immerse my hands in it. I can relax and let the blood flow to my fingers improve as the heat washes over them. I do this because the blood flow to my fingers improves with warm water, and that REQUIRES less alpha adrenergic tone. It is a form of biofeedback that works quickly to turn off the adrenaline related uptightness, and induces the more relaxed tone needed to "hang loose" (yes, that is what that term means).

Good luck with this.

Tim

[George999]

I second Tim on this one.  Peyronies is such a terrifying disease, its almost on the level of HIV or Cancer in terms of its emotional baggage.  Just the thought of having it can cause a mind body interaction with accompanying symptoms that tend to 'confirm' the diagnosis.  Thats were it is necessary to consult with a professional and LISTEN to what they are telling you.  Medical diagnostics are pretty good these days and if the results of these tests indicate that you don't have Peyronies, you can pretty much relax and take that to the bank.  And most other serious disease issues would also be revealed in such testing as well, so it is probably a waste of time, money, and emotional energy to keep on sweating it.  That would mean that any problem you perhaps do have is sub-clinical (too mild to be easily detected).  Such problems often resolve on their own.  You are very fortunate.  Many of us here who have been diagnosed with Peyronies would be delighted to be in your shoes.  So take a little bit of Viagra or Cialis or even Horny Goat Weed and get your mind off of 'sexual performance' and on to more important issues of life.

- George

[Liam]

Well said Tim and George.

Good Luck Wolf!

[litningwlf]

I appreciate the sentiments expressed. It's nice to get opinions from non-doctors who can relate to this, because I haven't had the greatest experiences with urologists.

Tim, I'm definitely going to take the medicine Lue advised me to take. (I started taking the pentox a few days ago at a low dose and am hoping my stomach can tolerate it when I amp up the dose to the prescribed amount. It didn't in the beginning). And I get what you said on how your help couldn't compare to a doctor who examined me.

The thing that's causing my anxiety is that when I presented Lue with the fact that the tissue doesn't stretch the way it has my entire life, and the fact that it's full and firm 24/7 since the injury (when it used to be extremely flexible and stretchy), he didn't have an answer one way or the other. And the fact that only recently have I lost noticeable girth and length in the flaccid and erect state (two months after the injury) is what's confused me. That's why I presented it to you guys, because Lue wouldn't really respond to those questions. I also have seen some stuff on different websites, where people have described symptoms similar to mine and have said they have gotten progressively worse.

I guess when you're used to something your whole life (including rigid morning erections, which I haven't had since the injury), and you're told by specialists that there's no detectable cause for the change, you start to question them. That, and when I went to see a doctor in October because the head of my penis was black and blue and shrinking, the doctor there said I had a substantial venous leak. Three months later, he said nope, you're good to go.

Anyway, hopefully the pentox will make the tissue go back to normal and will prevent any more loss of size, so I can stop worrying about this. I'll be glad to hear any other thoughts on this, and thanks again for providing a forum for someone like myself.

P.S. I didn't mention this before, but Lue did find a small amount of scar tissue under the head, which probably caused the shrinking of the head and the curvature I have. He said he thought the Pentox would probably get rid of that. Wish I would've seen him before my visit to that other doctor office where I suffered the injury.

[Tim468]

It sounds like a vascular injury/healing process.

The chief problem is that sometimes those progress to form a penile fibrosis. The best therapy for that is Pentox and Viagra/cialis/L-arginine - and it sounds like he started you on that.

Tim

[George999]

litningwlf,  I think it is VERY important that you understand that 1) it is to be expected that the penis, like any other part of your anatomy is going to take time to heal.  In the mean time it may make you scared to death to look at it.  Things often don't look nice after they suffer trauma.  The penis is no exception.  And 2) most penile injuries heal without causing Peyronies.  Peyronies is not caused by penile injury in isolation, but rather Peyronies is caused by something going wrong with the healing process.  One would expect that in the case of a normal healthy individual, the healing would be fairly complete and the result would be a fairly normal penis with little or no permanent damage.  This should be even more the case if you are on a preventative treatment plan in the process.  You are definitely on the right track at this point as Tim has pointed out.  In times of crisis it is easy to be frustrated and even exasperated with doctors.  But in reality the doctor is not the problem.  If you were in their shoes, you would find out how easy it is for a doctor to become frustrated and exasperated with patients, not to mention with all the other extraneous stuff they have to put up with.  I think you are very fortunate to have someone like Dr. Lue at your service.  He is just one of a number of reasons that UCSF was recently ranked 9th in the nation in terms of excellence in care.  You are in good hands.

[Liam]

Peyronies is not caused by penile injury in isolation, but rather Peyronies is caused by something going wrong with the healing process.

This should be highlighted and underlined in every definition of Peyronies Disease.  In the time I've been participating on this form, men who have experienced trauma have come and gone.  Few are still here because Peyronies Disease developed.

I think in most cases the anxiety causes more problems than the injury itself.

Peyronies Disease is defined by the plaque.  It has to be there or the penis would not curve.  Unless, of course, it is something else like a congenital curve.  The plaque and curve are the front runners.  ED and size changes are "also rans".  Peyronies Disease will cause curvature and/or a palpable plaque (the plaque will be there, but, some folks can't find it) before the other symptoms will show up.

[gibson101]

Im replying to Bob here

Bob i have the exact same issue as you. Young and suffered an injury and the same effects as you.Ive been to many urolgists and done all the scans adn they also tell me they cant see anything which is highly frustrating. TAKE THIS SERIOUSLY WHAT IM ABOUT TO SAY....I almost lost my mind when this began and I promise it only made it worse....I have since then got on anti-depresants and worked really hard on getting my mental state right. I believe that it has helped to slow down the progression which was significant at first. I am now on pentox, L-arginine, Azetyl L-cartinine, CIALIS and Vit E...and I am praying and keeping my head right which Im hoping will help as it seems at the moment that docs can do nothing to help. PLAESE if u go to a urologist and they do find a way to help PLEASE PLEASE let me know. Personally I cant handle another dissapointing visit to urologist for the time being but will go sometime again I guess

Regards and best of luck...get ur head right first and formeost the mind is an extremely powerful thing

[litningwlf]

Since my injury nearly three months ago, I have read comments from people with curvature and weak erections and I've read comments from those who are impotent and have their penises firm in the flaccid state.

Here's the thing: I had curvature before this problem started. I had some sort of plaque, and I believe somehow it was blocking normal oxygenated blood to the head, which caused that to shrink. I tried a bunch of doctors, a bunch of herbal supplements, but for some reason, I had read that arginine was bad for you, so I didn't take that. Instead, I took something called gotu kola, which one day after ejaculation made the penis firm in the flaccid state. Then I had a diagnostic injection, which started to cause some impotence. I still had rigid morning erections. But then the main thing was a significant bend in the doctor's office which I described earlier and am having an impossible time getting over.

If this wasn't Peyronie's (an abnormal healing disease), then why nearly three months later would I still be impotent and not have any rigid morning erections? Why would my penis be firm in the flaccid state 24/7, which, despite what the ultrasound has indicated, is fibrosis from everything I read. The first doc I saw after the injury said I had corporal fibrosis, but quickly changed his mind after doing an ultrasound. The penis just does not stretch laterally, which if that happened for a day or two, might be OK, but when it's like that for three months, accompanied by total impotence, is extremely frightening.

Why did I only lose size two months after the injury? It seems to me that there are a lot of people out there with this "atypical" Peyronie's, if you will. And I pose all these questions to you guys, because even the top expert in the country doesn't have the answers.

All I know is, is that unfortunately I have a sensitive system, so taking pentox or even cialis is extremely difficult. I wake up every day without an erection and am extremely anxious. I get what some of you have said, I really do, but I wish there was one person out there who said, "Yeah, same thing happened to me, injury, impotence, loss of size and firmness in the flaccid state. Fortunately, after so-and-so time and so-and-so treatment, my tissue is back to normal and so are my erections."

It's extremely difficult to put this on the backburner and get on with my life. I was able to do that before the injury, but the fact it's gotten worse instead of getting better or even stabilizing has me thinking about this every moment of every day. The thing about is, it's not like I was having lots of sex right before this happened, nor did I expect to go to a club sometime in the last three months and hook up.

I'm just an average horny single 26-year-old, who would like to get into a normal, sexual relationship and eventually get married and have kids. If I was in a relationship and this happened, I would hope my girlfriend would be supportive and help me deal with my anxiety while I tried to stomach the medications so I could get back to pleasing her.

But now, among the many things being played over and over in my head, is meeting an amazing girl, starting to get physical with her and then telling her my current plight. I've tried to get a gauge from friends on how a girl my age would respond and I don't really like the odds.

Even with the shrinking head, I had a good sized, fully functional, slightly curved, but non-fibrotic penis. If I was forced to stop doing anything sexual for a few months, I could've done that and not worry about any progression of my symptoms. Now, I have no clue whether I'm going to lose any more size, if the penis will return to its completely normal flaccid state and whether I'll be able to have rigid erections again without the aid of cialis or viagra and some hand stimulation.

Like someone else from this board told me, I took my penis for granted. But I can't understand how even a significant penile trauma could result in this. I'm sorry for repeating some of the same things over and over again, but so much of this confuses me. Among my many regrets is not posting in this forum before my injury, when I had what now seems like a very minor problem.

With all that said, and trying to give you a comprehensive history that Lue and the other doctors didn't have time for, I hope to read some optimistic responses. To be honest, I'm desperately searching for optimism grounded in realism, because my current condition, coupled with some people's posts about dealing with this stuff for years and getting worse, has me in the deepest anxious depression.

P.S. Speaking of the psychological part, does anyone have any practical advice on how to deal with the "way" this happened to me? i.e. It's killing me to know that if I bent my penis toward my stomach in my boxers that day instead of trying to keep it straight, this injury would've never occured and I would have a fully functioning thing right now. Or, if I would've taken arginine instead of gotu kola, I would've never been in that doctor's office in the first place.

Not sure if you can provide a real answer to that other than saying, Go see a therapist, but I welcome everyone's comments. I have gone, and it hasn't helped. I'm starting to realize that however the onset, many guys are dealing with this unique condition undetectable on an ultrasound.

Thanks

[meanmrmustard]

lightning wolf and gibson, i can relate to a lot of the things you say. my injury occurred 5 years ago, i was 18 back then, in a way that's so ridiculous that I was embarrassed to tell it to the doctors, the fact that most of them said that this could impossibly be the reason for my problems didn't help. i was making out with a girl on a couch, had a firm erection, had to get up, was too embarrassed to adjust my erection within my pants, so getting up it was pressed to the side in a weird way. in these five years i haven't yet been able to relive this situation in my mind, adjusting my actions and moves in a way that this incident never occurrs.

since then my erections have constantly gotten poorer, no nighttime erections at all, pain after sex, phases with constant pain, white defluxion, hourglass efects, ... and heavy psychological effects of course, depressions and son on. right now i'm taking pentox, vitE and cialis twice a week.

oh now to the diagnosis part, which will be depressingly short: none of the 5+ docs I've seen so far has been able to tell me what's going on. there's no palpable plaque. but there's deformations, the beginning part of my penis, the part that's closest to my body, is thinner than the rest, and still seems to be losing circumference.

as the white, milky defluxion indicates problems with the urethra, i was looking a bit into that here http://www.emedicine.com/radio/topic733.htm

(excuse my english, i'm austrian)

[George999]

litningwlf, my advice would be:

1) General advice:
  A) Get and read the book "You: On a Diet" by Roizen and Oz and learn how specific foods affect your body and impact your health and adjust your diet accordingly.  Especially make sure you concentrate on anti-inflammatory fats as opposed to inflammatory fats which feed Peyronies.
  B) Get plenty of appropriate exercise.  It will greatly benefit not only your physical health (via systemic Nitric Oxide Synthesis stimulation), but also your emotional health.
  C) Make sure you get sufficient and regular sleep.  To much partying is not good for Peyronies.

2) Peyronies specific advice:
  A) DO the stuff that Lue recommended (Pentox, Viagra, Arginine).  If you do the Pentox and Viagra with food that will help you to tolerate it.  As for Arginine, I recommend SAN VasoFlow.  Unlike other Arginine formulations it is not harsh and it contains synergic compounds as well which means you get a lot more bang for a given amount.  You want to knock out things like TGF-beta-1, PDE-5 and Arginase and stimulate Nitric Oxide Synthesis which is a powerful plaque disolver.
  B) I would also recommend Broad Spectrum E containing not only Alpha Tocopherol, but also Gamma Tocopherol plus traces of all the other six Tocos.  I also recommend Cocoa (nut) which has been shown to soften vascular tissue and rejuvenate elastin.  Nattokinase is another good supplement.  It knocks out excessive amounts of fibrin in the blood stream.  Fibrin, along with collagen is a key component of plaque.  NOTE that Pentox, Vitamin E, and Nattokinase can all cause bleeding, though via three different mechanisms.  So be sure to discuss their use with your physician and be careful not to overdo either the Vitamin E or the Natto.
  C) Consider acquiring and using a VED.  Check out the VED section of this forum for more information.

The best thing you've got going for you is 1) you are young.  Young people are much more likely to recover from these kinds of things relatively unscathed.  And 2) its only been three months since your injury.  That close in the Pentox/Viagra/Arginine is MUCH more likely to be effective in knocking this thing out, even if it wouldn't otherwise heal on its own.  You need to get out of the panic mode and get into the action mode.  The worst thing you can do is to fixate on the horror stories.  Instead make up your mind that you are going to beat this affliction and DO the stuff you are being advised to do by Dr. Lue.  I really doubt if the herbs you took have really worsened your condition in any way, but I doubt that they have been helpful either.  You need to forget about your 'sensitive system' and make use of those substances and therapies that have been shown by legitimate research to be helpful in dealing with these types of issues.  And don't listen to the people who will try to tell you not to use this and not to use that because it will somehow permanently damage you.  None of the above approaches are likely to damage your future erectile capabilities but doing nothing very well might do just that.

I wish you the very best!

- George