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That sounds like great news! Congratulations!
Nemo
Mentos
Good news indeed :)
Please check your post before posting it because we have also many members that they are not native English speakers and don't understand missing letters words.
James
Ahh Mentos,
Congratulations on your findings and your meeting with Lue.
It makes me both excited and terribly confused, for all of us who don't know whats going on.
I am unable to get an ultrasound here in Japan, but the nature of my Peyronies - cords running inside of body, cords going OVER urethra), makes me wonder if I even have it at all. Of course, my symptoms and deformity is bad enough to make anyone think its Peyronies, but I simply don't know.
I have family an hour drive from San Francisco, I wonder if I should take some time to make this work and see him.
Well done Mentos! And thank you for the inspiration.
-V
NeoV
Recomendations = ibuprofin 3 times a day for up to 8 weeks. no sexualy stimualtion. give it a shot.
good luck
I'm so glad to hear that you don't have peyronie's disease. I don't know anything about Mondor's disease but I'm guessing it isn't as big of a problem as peyronie's.
How could Dr Lue tell that you had damage from trauma at the base of your penis? Was it from physical examination or ultrasound or something else?
I think dr Lue was wrong. :(
Can you explain? What makes you think he was wrong?
Knight.
My penis curves up more than before. I dont think mondors should cause this. I have had this for close to 4 months now. mondors should self limit itself to 6-8 weeks i believe...
:(
I don't think you have peyron'es nor mondors disease. These "strings" you are describing are common in hard-flaccid syndrome, according to the HF forum. I read that it dissappeares after getting rid of HF.
Damien have you read that hard flaced causes curvature?
Quote from: damian on January 27, 2014, 05:14:30 PM
I don't think you have peyron'es nor mondors disease. These "strings" you are describing are common in hard-flaccid syndrome, according to the HF forum. I read that it dissappeares after getting rid of HF.
Go to forum.hardflaccid.org.
Yes, some also have no Peyronie's, but have developed a curvature. You already had a curve. HF is weird condition, all kinds of symptoms are possible. If Dr. Lue already told you no Peyronie's, you probably don't have it :)
Cpps do you have it?
Cpps I have a hard line from base to top of penisnthancauses increased upward curve. Feels like it could be a vein inflamed / mondors but I heard mondors only lasts up to 8 weeks and it's been moths. Plus mondors does not usually go he whole length of the penis.
If it's not peyronies jay would be a miracle. More input is appreciate d
go to the hf forum as said. Many guys are reporting these "strings" and noone knows what they are and there are some who got rid of them. I have them too, but I HAVE a scar tissue problem because of injury. These two issues are somehow related, but if you have one it doesn't mean that you have both. Peyronie's is pretty uknown by doctors, but HF is even more.
During the months of search I also came across the HF forum because this was the symptom before appearance of plaques. I'm now certain it comes from inflammation and those guys basically just have a form of inflammation of the tunica albuginea which may or may not develop into Peyronies Disease. This whole pelvic muscle theory is nonsense.
Oh, we have the wisest guy on planet on the forum. Nice to meet you.
Guys reported that they cured their hard flaccid. Some of them had it for years, but never developed peyronie's. It's your word against... bunch of them.
@damien: Inflammation tends to go away on its own. Just takes time. They just think it's something they did which cured them. There is also something called the placebo effect.
There is a relation between the pelvic floor and hard flaccid, but I'm not going to discuss this.
Damien and Emasculated... What do you think of my case?
The doc should be able to distinguish plaque from something else in an ultrasound. It's not that difficult to tell even by palpation only. There are many inflammatory conditions of the penis and I'm not sure we can say with certainty how long Mondor's or anything else should take to resolve itself. I had sclerosing lymphangitis, vasculitis etc.. before Peyronies Disease started and the SL is not complety gone and flairs up from time to time still.
To check whether you have Peyronies Disease do the bpsfl measurement regularly. If there is no change over many months you probably don't have Peyronies Disease.
I think that you should read up the hf forum. It's free and you have nothing to lose.
The penis is attached to the pelvic muscles, which usually controls contraction of the penis (for example: when it's cold, your penis will contract). CPPS is a pelvic floor disorder, mostly caused by so called "trigger points" and in heavy cases you may develop HF. Sometimes I think that plaques in the penis act just like trigger points and are so causing pelvic floor issues. I got them all (symptoms) after my penis injury. From prostate pain to contractet painful muscles between my anus and my balls... and yes, hard flaccid.
All of this is theoretical, because it's not enough researched. You can follow my advice and read a bit (it is an ugly forum, I know) or you can sit there and think it's an "inflammation of the whole penis".
what puzzles me is how the hardness i have is like a perfect line right along the top of the whole penis... makes sense that is could be the vein inflamed in that sense. however the hardness goes midway into the gland as well as the pictures i have seen of the vein stops prior to the gland...???
sometimes when i google pictures of penis anatomy and the the tunica i feel like is could be plaque all along the center of it. ??
man i wish i had some answers and miracles too!
Mentos: MRI?
Guys,
I am certainly not new to penis issues and I am a pretty tireless researcher of information but until this topic I never heard of "hard flaccid" used in the context of a disorder or as a diagnoses but only as a symptom of some other condition. I have been to that forum. I admit to only giving it a quick overview but my initial impression was not good. I saw a few things that raised a red flag.
Does anyone have any reliable medical resource that identifies "Hard Flaccid" as a legitimately recognized medical condition by any Urological association or even a group of practicing urologist or Sexual Health/dysfunction physicians?
I hope the answer is yes because I want to see it. If the answer is no then we are wasting our time on a misunderstood symptom rather than a disease and we need to stick with facts.
Emasculated I had an ultrasound done by lue and assistant. The long chord like lession did not show up.
I had what was described as a very thin layer of plaque which showed up brilliantly on the ultrasound with Dr. Lue. If plaque was there, it would show up. An inflamed vein would not.
Skjald
Hawk. What if this disorder exists, but isn't researched at all? Should everyone wait, until this disorder gets a name? HF is just a symptom of CPPS, according to lot of guys who are suffering from cpps. And no. No doctor aproved it, but If you have the choice between waiting for a fancy doctor to acknowledge this disorder and physio therapy.. why not try PT?
It's just my opinion.
damian
Sorry, but I am with Hawk on that.
I have indeed hard flaccid sometimes. It is happening sometime if I am aroused a little bit or just from the penis touching the underwear.
The doctor don't think that is important, he thinks the Peyronies is my issue.
By the way, can you give some explanation on the shortenings:
CPPS, PT. I suppose HF=Hard Flaccid?
James
PT = physical therapy
CPPS = chronic pelvic pain syndrome
Although I would translate the latter as "clearly psycho pseudo symptoms" :-P
Hey Mentos! Yes, I do have Hard Flaccid.
If no plaque was found and Lou said Mondor's my suggestion is to take it easy, abstain, take your pills, and see if it resolves.
PS: By abstain, I mean truly abstain, meaning don't be touching it "every once in a while". Just leave it alone.
Let me also add that I have no 100% certainty as to what my problem is caused by; I only have theories. But to say that just because there isn't any medical proof of it means that it doesn't exist is quite silly to me. Westernized medicine is there for profit. 90% of the time they would rather prescribe you a medication rather than fix the actual problem.
At my worst Hard Flaccid, I walked into a urologists office and he told me I looked 100% normal! What a joke! My flaccid penis was as hard as a rock and about 1/3 it's normal size in length and probably 1/4 of its circumference. If he truly believed in research. He would have documented my case for further study later, instead I was given Cialis. Again, what a joke! There is your medical research.
Thanks CCPS and Skjald. Hard to keep leaving it alone and hoping it will fix itself that way... Expecially as at times my flacid shows some hourglassing --like yesterday after skiing all day..(??)
I also have HF at times. The worst was when i saw my X gf when i knew she was dating someone new. HAHA! got to laugh at life sometimes.
Having personal theories is your right. Diverting a medical support forum with them is not. This is stepping on and diverting Mentos topic.
And yes, in my view you have no choice but to wait for medical recognition, objective testing, research, and double blind, randomized clinical trials because a plumber, and an accountant are not going to be the ones to discover a disease, understand its origins, and then develop an effective treatment for it. It is nonsense that drains away precious energy and resources that could actually accomplish something. Suspending all objective evidence and rational thinking is not medicine or science, it is belief and faith. There may be a place for them in religion but not in the daily treatment a a penis issue.
I have personal theories about aerodynamics that I think should not be rejected just because no fancy engineers happen to recognize them. I am building an airplane based on those theories. Would you like a ride ???
Now, I apologize to Mentos. Lets let him have his topic back. For further discussion on HF please post here: https://www.peyroniesforum.net/index.php/board,48.0.html
@emasculated - I am not saying that anyone, including myself truly has CPPS, but this condition is not pseudo science. There has now been confirmed medical research on it. Not on the Hard Flaccid, but definitely on CPPS.
@Hawk - No need to apologize. I have been messaging Mentos privately, and he knows that I mean well. I am not going to argue with you. Do as you please - not my problem. And being condescending is not going to shut me up, I didn't offer any of my uneducated, accountant "theories", did I? I merely suggested that medicine isn't always in our favor. How many times have those urologists who have seen me looked at a flaccid penis? Thousands of times, yet they claim that mine is in a "normal" state. A caring system would have at least acknowledged that based on their current studies, they have no bases of helping me. This would have been the ethical thing to do. This isn't going to turn into a posting war. This was the last time that I acknowledged any of your comments on this thread.
Lastly, read me posts, am I not the one who told him that based on Dr. Lue's conclusion he should trust that he doesn't have Peyronie's disease? He stated Mondor's; therefore, Mentos probably has a persistent case of it.
Don't you worry though, I will no longer be posting on these forums. I will only private message members whenever I feel like our symptoms match and we can help each other to unravel our issues, as I already have done with Mentos :)
Hawk
I'm 25 and I'm scared of waiting until my late days for a cure. I'm surprised how you think about this. Even if you're in your 60's (I think), you would be willing to wait?
I'm talking about hard-flaccid. A "disorder" which people seem to get rid of by a simple and healthy treatment (PT). Even if it isn't confirmed by some of our holy surgeons like Levine, I'd try it.
I think it's a win/win situation.
It's an advice and mentos seem to be intelligent enough to decide what to do.
I didn't wait. I do treat. I advocate treating early. I treat Peyronies Disease however, not made up diseases. There are phoney cures by the thousands that people swear by. Where is the hard data? It does not exist. You base your diagnoses and treatment only on faith in what someone on the internet said. How desperate is that? People peddle all kinds of silly stories on the internet. Look at Dr. Lin the love doctor (not a doctor) for examples of dozens of quack cures.
In this case, not only is this made up cures, it is a made up disease. If you got cancer would you treat it with the asparagus cure? After all its on the internet. How do you know what to accept and what not to accept if you have no standard? Would you accept that cure for cancer? If not, why not? Should You Believe the Internet Rumors about This 'Miracle Cancer Cure'? - Cancer Defeated Newsletter #185 (http://www.cancerdefeated.com/newsletters/Internet-Rumors-about-Miracle-Cancer-Cure.html)
2 things.
1.Everyone on this thread is seeming to imply that if no plaque showed on the ultrasound that it isn't peyronies. HOWEVER it seems like I see this happen very often on this form where it cannot be detected. Am I missing something here. Why are you all so sure it's not peyronies if others seem not to show too??
2. I appreciate all the work the moderators do to keep this site organized and concise. But i feel sometimes the moderators for whatever reason put down well intentioned people and it results in them leaving the site or anger. I wish this was not the case and I hope the moderators can adjust some of their modes of communication to prevent this - if they seem this a worthy reason too. Not insulting the moderators, just constructive criticism.
Thank you all for continued physical and emotional support. It is greatly appreciate.
I've been reading more and more on this site and my case sounds scariy similar to many people's septum peyronies which is somehwya of an atypical
Case in some respects. The length of the scaring is incredibly concerning regarding how much is could possibly horrendous my penis and cause upward bend.
Going to pray now
I don't think it's going to happen without plaque. I thought I'd lose my whole penis within months and get ED, but I lost 1 cm in the beginning and still can have erections in no time (thanks to god or whoever) and I had an injury.. with real scar tissue/plaque.
No case is like the other and worrying is not going to change anything.
Here's something for Mondor's:
I deleted the link as per James' request. If anyone is dealing with Mondor's, please PM and I'll give them the link I found.
Although the site I deleted has some commercial interests, the product for Mondor's and overall penile health is not being sold, it has to be made using ingredients you buy at the grocery story. The link merely gives you the how-to-make info. The mixed oil is claimed to be a vasodilator which is good for the penis.
I have some doubts regarding tour link Matt.
It is a pure commercial site.
Better delete the link and state that if someone want an article in the subject you will PM him the link
James
QuoteAnd yes, in my view you have no choice but to wait for medical recognition, objective testing, research, and double blind, randomized clinical trials because a plumber, and an accountant are not going to be the ones to discover a disease, understand its origins, and then develop an effective treatment for it. It is nonsense that drains away precious energy and resources that could actually accomplish something. Suspending all objective evidence and rational thinking is not medicine or science, it is belief and faith. There may be a place for them in religion but not in the daily treatment a a penis issue.
It's really showing that this board consists only of men (except female partners of course). If Peyronies Disease was also a women's disease I suspect there would be much more room for "alternative medicine" and all this. ;-) But as it is this stuff is relegated to a corner called "Child boards", hahaha. :-) I just noticed this. Men like science / the scientific method. I'm no different. In this case I'm glad only men can get this... Sticking to reliable proven methods / results keeps the discussion focused and ordered.
It worries me when I see the hour glassing mid shift that info when flacid from time to time. Especially after vigorous excercise. :(. Going too get on the VED program soon. Damn
VED is essential to good penile health not just Peyronie's. Also, when I get that shrinkage look, I apply heat in the form of a rice sock or a heating pad, which I always keep away from my balls.
lue was wrong wrong wrong.
I just got out of a massage and had a rock hard penis. but it stuck pretty much straight up and was so much shorter than anytime before. I could not push it down because the hard line along the top restricted it.
I am beyond upset right now.
I would definitely contact him and tell him what's going on. You have a every right to be upset. Other than calling Lue, get on VED and any other treatments you aren't already doing.
What's the best VD to get for upward curve
Well, in theory couldn't arterial sclerosis air vein thrombosis cause strain on an erect penis?
My issue seems so clearly to be a kind if constricting from veins that have become enlarged over the years. Sounds crazy, but given the circumstances seems almost more likely than peyronies.
Then again, my symptoms are classic peyroniea and even came from a slight injury.
I'm lost without an ultrasound, but I lue really made a mistake I'm more confused
Hey neo
When I try to push down my erect penis as before there is a hard line that restricts it. I don't this a vein/artery could be like this. It's frustrating because it's straight so one may think its a vein and not scar... I'm lost too
Mentos: Make a picture of the erect situation and send it to Lue perhaps? Also even though in general ultrasounds are more reliable than MRI's. Sometimes an MRI can detect scarring an ultrasound misses.
That is similar to my condition,
Oddly enough I've nearly fixed all my symptoms by pushing down on my erect penis from the base. I stretch out whatever it is holding my penis up carefully. I've done this for half a year and it has changed my penis completely. Whatever it is it's constricting and stretching has helped me.
Of course you could damage yourself doing that, but honestly it's the one thing that has rid me of my peyronies, I would put VED at #2.
I'll message you about it soon. That certainly is troubling.
Walked straight into lue office and told them I need to see him. REDIAGNOSED WITH PEYRONIES :(.
We increased my Pentox prescription and cialis.
He advised against VED or TRACTION at this point as well as verapamill. Stating that if the Pentox will do the trick why waste money etc on shots and that the other manual therapies may do more damage. ...
He obviously told you what you wanted to hear. Did he ultrasound again?
Quote from: damian on February 03, 2014, 01:27:36 PM
He obviously told you what you wanted to hear. Did he ultrasound again?
That's the stupidest thing I have heard on this forum. No I did not want to hear that. I just wanted him to feel the hardness instead of ultrasound and tell me what is up.
There is the knowledge border of our doctors. He probably isn't sure what you have, but you have symptoms similar of peyronie's (curvature etc), so he decided to treat you like you have peyronie's. It's simplier, than saying that he doesn't has a clue as a doctor.
I'm not saying that he's wrong (how can I), but I'm unsure about plaque that doesn't show up with ultrasound.
As mentioned before he say a little bit of plaque... but the hard line that goes from base to top did not show. just a little portion i geuss.?
I mentioned before. I have TWO lines like you describe. And I'm pretty sure that they are HF related, because they seem to go away at times. Especially when HF is better.
Plaque doesn't come and go.
And yes, I have scar tissue too (injury), so I know what it's like to have both.
My hard line is not going nowhere if my "HF" is better. Just can't feel it same as when the penis is hard.
James